Goodbye Mom

Mom has passed away from a supposedly unrelated aggressive neuroendocrine lung cancer on June 8, 2013.

Update:  I look back at this blog and it is about fighting for life and being for a time seemingly successful at battling a horrible disease. Ultimately though, things will run their inevitable course.  I wish I had spent more time on connecting and helping her through her final stages of her journey in a way that was more personal and accepting of the inevitable.  10/01/2018.

An interesting article on PC vaccines

http://www.nytimes.com/2012/12/23/magazine/is-the-cure-for-cancer-inside-you.html?pagewanted=1&_r=1&

Move to California...

Mom and Dad have moved out to California now!  Have to find a whole new set of doctors (5 of them if I'm counting correctly...).

Looking back over this blog, I hope it has been a helpful resource for others who might be facing this terrible situation.  But I realize that we were incredibly "lucky" in all respects - we had time and resources to research, find great doctors, and go to them; we got an incredible outcome from the surgery given the initial diagnosis.  Because time is also a very important factor, my feeling is you have to just try your best to assess the alternatives and go with the best choice that you have at your disposal and not look back to really question any of the decisions made.  The landscape on what works best may have changed in the last few years as well.

Mom's Update

It's been a while since I posted but Mom is still doing for all intensive purposes fine (she's still here!). In June she had this crazy idea to go play golf with my Dad. After a few swings she tried hitting a driver and proceeded to hear a large cracking noise from her back. She injured her spine and was in pretty severe pain. This was a problem because they had scheduled a tour of italy with Linda.

After seeing her doctor and doing a bone density scan, they found her result to be -3.9 which is very severe. She took some steroid shots and went to Italy anyways. They had a great time and the tour was very accomodating with my mother's condition.

We just returned from our Hopkins checkup a couple of weeks ago and everything was pretty much clean. However, the CT scan showed a compression fracture of 80% in the T12 area of her spine. We consulted a spine surgeon (Dr. Hasz of the Virginia Spine Institute) and he mentioned that there was nothing he could really do for her but rather that we needed to treat her osteoporosis as her level is *very* concerning. He mentioned we would need a non-standard and very aggressive treatment plan.

So I spent some time trying to track down a specialist and it was fairly difficult. It seems that most osteoporosis specialists are endocrinologists. First I looked for private practices. These days there are a lot of Dr. review sites that you can look at to get a feel for the doctor. A lot of the private practitioners had terrible reviews so I avoided those. The good ones were very busy and couldn't take appointments till late December, early January. I tried Hopkins but realized their bone center is 20 minutes further than the hospital so that was too far. We finally settled on Dr. Barsony at Georgetown. I feel more comfortable with university doctors for these kinds of special situations so hopefully she will end up being a good choice. The appointment is scheduled for December 10.

My mother's 5 year anniversary from her Whipple is coming up on Nov. 28. They will be at Hopkins for a blood draw so we scheduled a little meeting with Dr. Cameron so my parents could say thank you. He's 77 now but still trucking along doing many many whipples a week. I think his record for number of Whipples will be unbeatable.

Almost 4 Years

Mom is going through her biannual vaccine treatment. She's doing very well! We saw Dr. Hutcheon a couple of days ago as well. He mentioned the four year mark and the fact that Mom is doing very well. We discussed her periodic eating problems and he thought it was an issue with her stent getting plugged. He was quite pleased however with the overall state of the stent and stated that it has lasted well beyond its time. It sounds like the stent will need some intervention at some point - either insertion of a new one or burning it out (?). I remember asking him at the time he inserted it if the stent was permanent (I had read they were not) and he replied that it was. I think he was possibly thinking it would outlast Mom but he seems to thankfully have been wrong. It's been raining here so the drive to Hopkins is a little more difficult. One more day of blood draws and we are good for another six months.

50th Anniversary

Mom and Dad celebrated their 50th Wedding Anniversary!

Six Month Checkup

Mom went in for her 6 month checkup and things are fine. Her scan was clean and her CA 19-9 dropped back down to 35 which is great news. She passed her blood test for the vaccination (this time she stopped all herbal supplements a few weeks ago) and will get the shots on Monday. Another sigh of relief.

GVAX Troubles?

Looks like Cell Genesys who is trying to market the GVAX vaccine is having some problems: http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2008/08/28/BU7012JCJD.DTL We need to find out more about how this data reflects on Hopkins work.

Six Month Checkup

Another six months have passed and we are very close to Mom's 3 year diagnosis anniversary. She recently had her CT scan which was said to be clean. Her CA 19-9 came out to be 45 which is near the high end of her previous history (priors include 48 and 43) but we hope that this is nothing to be concerned about. She received the GVAX booster shots and her reaction was deemed favorable to it (itching, swelling and slight fever).

Six Month Checkup

Once again, Mom did very well on her 6 month checkup. Her CT was clean and her CA 19-9 came in at a normal 32. So we are once again very happy and relieved. She begins her round of the Hopkins vaccine on Monday. Mom and Dad are planning a big trip to Korea in May so hopefully she will feel well enough to go. Her recent problems include continued problems eating and more recently some pretty severe back pain. It's unclear what is causing the back pain but her GP thinks it is musculo-skeletal. She did some physical therapy but it doesn't appear to be helping too much.

Happy New Year

Our mother celebrated her 72nd birthday on New Years Day with the whole family. It is more than two years past her initial diagnosis. She has started to suffer some back pain on her left side. Her new GP took some X-rays and thinks it is likely muscle/skeletal pain. He prescribed some pain killers and we'll find out the X-ray results in a few days. Her next checkup/vaccine treatment is scheduled in March. Afterwards my parents hopefully will make a trip to Korea.

Scheduled Checkup

Dr. Laheru just said that Mom's CT scan is clean. The pseudocyst actually may have shrunk in size and is nothing to worry about. CA 19-9 results will be out Friday. Next week, Mom will have her second full-week round of injections of the Hopkins vaccine. We're closing in on two years from diagnosis which will be a wonderful milestone. Mom has been also feeling somewhat more energetic these days. She attributes this to drinking a soy milk supplement. She had tried all the milk based supplements such as Ensure, but these all make her nauseous. We were a little concerned about the soy since some studies discourage the use of this for breast cancer patients but Dr. Laheru doesn't think it's a problem. Update: CA 19-9 is within the normal range at 32!

Research Updates

It looks like Dr. Picozzi and Dr. Laheru have been busy. A study using a variant of Picozzi's protocol (Gemcitabine instead of 5FU, with Cisplatin and Interferon) has shown very good results for adjuvant therapy (44% 4-year OS). Laheru has also published updated results that show a median survival of 26 months from the phase II study of the Hopkins vaccine. I think this wasn't as promising as I was hoping (although I'm not sure I understand the numbers fully) but it still seems to be significant.

Vacation

We finally convinced our parents to go on a proper vacation. They were always too worried that my mother wouldn't enjoy herself because of her lack of energy and frequent stomach/eating issues. We kept insisting that she could keep her same relaxed routine even when they were on vacation. Well, they ended up really enjoying themselves in Hawaii and Las Vegas (over their anniversary). Hopefully, they will now begin to plan and take more trips.

Rest in Peace Judith

It's a sad day as we heard our friend Judith passed away yesterday.

CT Scan and Blood Test Results

After another nerve-wrecking day of testing (CT and blood test), we were thankfully told that everything still looks fairly normal. They did see a small area of fluid collection on the CT scan that grew from January. They believe that this is a pseudocyst or a poorly defined loop of adjacent bowel. Dr. Laheru does not seem to concerned about it and says we should just monitor it. Her CA 19-9 results came out at 35 which is still in the normal range. My mother was also able to finally have her mediport removed. Her next set of tests and round of vaccine injections will be in September.

Second Vaccine Round

The first set of vaccine injections wasn't too bad. My mother had hard swelling around the sites and experienced fatigue for a few weeks. She went for her second round on February 26 and has had even less side effects this time. I do hope that the vaccine is effective however. Overall, her condition appears to be improving and we believe she should be able to come out to visit California after her third round in March to attend my son's 2nd birthday. We are definitely looking forward to their visit.

Laheru's Vaccine Trial

After Christmas, we set to work trying to get my mother enrolled in Laheru's GVAX vaccine trial. Hopkins now has a trial for patients who have finished their chemotherapy regimen by at least one month. This is another phase II trial that will accept up to 60 patients. The coordinator mentioned that they expect it to close around the summer time.

Laheru just released updated results from the first phase II trial for the vaccine. About 60 patients at Hopkins were given the vaccine shortly after surgery and concurrently with chemotherapy. The 2 year results that were released a few years ago seemed very promising. The updated results don't follow the same stellar trend but they still seem to show significantly better results than just standard treatment alone: 26 months vs. 18 months median survival.

To enroll in the trial, you need to have a clean CT scan and your blood test numbers need to be relatively normal. The first time we tried, our mother's neutrophil count was too low. The next week that we tried, her liver AAT count was abnormally high - around 300. My mother had been taking the antibiotic Ciprofloxacin which was prescribed in November because of her chronic fevers. The Cipro worked wonders on her fever, so she was advised to continue taking it for several months. It turns out that Cipro might be harmful on your liver. She stopped taking it and 2 weeks later her liver counts were normal again. So we finally were able to get into the study.

The study involves getting a series of injections of the GVAX vaccine. The injections are given monthly for 3 months and then every 6 months. The first treatment involves getting 6 injections of GVAX, a tetanus shot and having a skin biopsy done. For the first week, you need to go in every day for bloodwork. My mother had her first treatment yesterday. The side effects have been fairly mild - just some swelling on the injection sites and she seems somewhat tired. Nothing like chemotherapy.

CA 19-9 Results Down

We are thrilled that the CA 19-9 came out at 18 which is the first time the marker has ever gone down, breaking the upwards trend - A great Christmas gift. Peace be with you.

Latest Checkup

Our mother saw Dr. Laheru this week. The great news is her CT scan was once again clean. We are awaiting her CA 19-9 results which we should get shortly. If those numbers stay in line, I will be very relieved. My family is heading over to spend Christmas in Virginia so we will be very thankful for any good news.

We had a lot to discuss with Dr. Laheru with respect to the next steps for her treatment plan. Basically we have decided to not complete her Gemzar chemotherapy. Our mother had completed only 1 of the 9 Gemzar infusions before she had some bleeding incidents and her stomach condition deteriorated. She has been very weak and has had problems with her eating and weight for the last year. Instead, we are going to try and start her on the Hopkins vaccine booster trial in January. Dr. Laheru mentioned that new results for the vaccine will be published in January but he wouldn't tell us if the results continue to look promising or not.

It's now been slightly over a year since our mother's operation. She has gone through a lot of suffering and she handled all of this with tremendous strength and a wonderful attitude. Her stomach pain and eating problems continue and don't show any signs of improvement but we hope that things get better next year. I hope she will be able to start enjoying her days a little bit more this next year and that she will be able to travel.

Happy Holidays.

CA 19-9 Results

My mother's CA 19-9 result came in at 48. Dr. Laheru is taking a wait and see approach - we are scheduled for another blood test and CT scan in early December. We need to decide whether any action is warranted right now.

Eating Issues

After the stent insertion, we were hopeful our mother's condition would improve. Although she was certainly better than when she was in the hospital, her condition didn't improve that much. She still continued to suffer from terrible stomach aches, and her chronic fever returned. She went back for a follow-up with Dr. Hutcheon and we asked for some antibiotics. After she started taking the antibiotics her fever FINALLY subsided. It has now been a couple of weeks with only one small incident of fever. Dr. Hutcheon has prescribed the antibiotics for her indefinitely - we need to verify that this is OK. I suspect that all along her problems were related to this infection that caused her fever and stomach pains. I suspect that this condition worsened when she was last admitted and that perhaps the stent was not really necessary. In any case, she's doing a little bit better although she still has to eat very very carefully and she has not been able to gain any weight abover her 98 lbs. She has a hard time digesting certain foods and it turns out that one of the best things for her to eat is maguro sushi. That seems really easy to digest. I worry a little bit about getting some kind of food germ from the raw fish but the benefits I think outweigh the costs at this point. She has another CA 19-9 scheduled on Monday this coming week and I am very very worried about the results due to her previously slightly rising values. I am praying that the result is stable or lower than before. It has now been about 1 year since diagnosis - a year of struggle and suffering for her - I pray that her condition improves.

Partial Blockage

After the bleeding incidents, we were all hoping our mother would be able to gain some weight so she could start back on her chemotherapy. However, she started getting weekly fevers in conjunction with sever stomach aches and the inability to eat. This would last for a day and then she would recover. However, a couple of weeks ago she had a very bad attack that lasted for many days. During this time she had high fevers and she barely ate for over a week. So we brought her to Hopkins again and she was admitted. A gastric emptying test the day before she was admitted showed that the food was just staying in her stomach. Dr. Hutcheon performed an endoscopy but was concerned that there might be multiple "strictures" or partial blockages. She did another barium test that showed that things improved. However, Dr. Hutcheon opted to insert a metal stent at the opening between her stomach and her intestines. She was released after about 9 days in the hospital and we are hoping that this will give some resolution to the issue. She is very weak and still suffers from frequent stomach issues. She just can't catch a break. Her weight has dipped down to 97 lbs.

We are now aware that she really needs to watch exactly what she eats. One thing that is interesting is that when she eats tuna sushi, she doesn't get a stomach ache. I know that there might be some risks with food poisoning, but the benefits here for her seem to outweigh the risks. So maybe she just needs a lot of sushi :->. Our parents are planning to come out to California so I'm hoping her condition improves over the next weeks.

We've also had some slightly worrisome CA 19-9 results recently. One test came out at 43 (previously at 26) but we retested and it was at 32. So the trend appears to be upwards which is not good. However, Dr. Laheru said it was still within the normal range. There's probably not much that she could tolerate in terms of chemo even if we had a higher number so we may just need to wait it out and retest. We're trying to go over strategy at this point - we may have to decide between completing the rest of the Gemzar treatments or trying to get her on the Hopkins vaccine trial. I need to find more information from Dr. Laheru in order to make this decision. I pray that her condition continues to improve.

Recovering Again

Mom, Dad and Kyle in early May before they went back to Virginia.

I haven't updated things in a while. I'm very happy that we went to Johns Hopkins. Dr. Hutcheon performed an endoscopy and cauterized several small areas that he said were bleeding. The next day, my mother had a normal looking stool for the first time since the first bleeding incident began back in early June. Whatever Dr. Hutcheon did, was really fantastic. My mother recovered in the hospital for a few days (her HCT was at 21 this time when she was admitted) and was released after a few days. Her HCT was at 34 when she was discharged and continues to hold steady. Dr. Hutcheon also has set up follow up endoscopies to check up on things periodically. I like his proactive approach. My mother though is still suffering from some terrible stomach aches after she eats. This is likely due to the radiation gastritis. She's unable to gain weight and remains at about 100 lbs. We've held off again on the chemotherapy until she has a chance to gain more strength back. Dr. Laheru ordered a CA 19-9 this past Wednesday and the results were similar to her last test so we're glad to hear that (about 26).

Very Concerned - Third Bleeding Incident

We checked Mom in today at Hopkins. She had suffered from weakness, very bloody stools and fever the last few days. Her HCT was at 21.0 today down from 25.6 on Wednesday and 29 a week ago. Clearly the bleeding hasn't stopped. Dr. Hutcheon performed an endoscopy and colonoscopy today. In our brief conversation today he said he cauterized a couple more small areas and that she suffered from radiation gastritis. I'm concerned the VMP phase I may have been too much for our poor mother. She's receiving blood today and I pray that we can resolve this issue for the long term. What I've read about upper GI bleeds is pretty scary. He mentioned that this condition may be chronic but he seemed to reassure me that it was manageable. Another Dr. who came by seemed somewhat ominous in her comments but I didn't want to press the issue at the moment. I'm very concerned.

Bleeding Again

On June 28 Mom found blood in her stool again. She went back to the ER at Reston Hospital and was admitted with very low blood levels. To go back again so soon was very depressing for her and she remained in the hospital till yesterday. During her stay they performed a couple of endoscopies, an angiogram and a nuclear medicine scan. The two ulcers that were cauterized last time had still not fully healed but were not the source of the bleeding. She had diffuse bleeding around her upper stomach area that was hard to stop because there were so many sources. Dr. Plotner said the lining of her stomach looked very raw and this was called gastritis. I suppose this was probably due to the one Gemcitabine treatment she received. We're scheduled to see Dr. Laheru this week so we'll need to see what to do at this point. We've also scheduled a follow up with Dr. Cameron. It's a pretty discouraging setback. Mom lost a lot of weight in the hospital since they had her on a liquid diet for almost a week. We need to figure out how to prevent this from happening again.

Second Phase Chemotherapy

Our mother began the second phase of her chemotherapy last Thursday after having a subcutaneous mediport inserted on Monday. She was given Gemcitabine via IV for a little over an hour. The nurses gave her Zophran for any potential nausea. Her reaction to this first infusion wasn't too bad. She suffered some very mild nausea and a mild fever for a couple of days (100.5 degrees). But she was going out to lunch by Saturday so I think overall it wasn't too bad. Hopefully it will continue to not be too difficult. Today is our parent's anniversary - I hope they are enjoying themselves.

Johns Hopkins Checkup

Our mother was at Reston Hospital for about a week after the bleeding scare. Her hematocrit was at 9 when she was admitted to the hospital. When we mentioned this to Dr. Laheru, he looked astonished and said "that's incompatible with life". Mom is just fine right now but I think that was a very very close call. The staff at Reston Hospital seemed excellent and we were very happy with her care there. We also were happy to meet a good GI doctor - Dr. Plotner, who performed the endoscopy.

The checkup with Dr. Laheru at Hopkins went very well. He said my mother's scans were clear and that the previous CT was probably an "overcall". He said the liver area looked just fine. We were all very happy to hear that. He recommended three rounds of Gemcitabine. Each round consists of three weekly infusions of Gemcitabine followed by a checkup with Dr. Laheru. Dr. Picozzi had recommended Gemcitabine plus Taxotere. I think this is probably based on the GTX protocol that seems to have good success with advanced pancreatic cancer, although he is not using the X part of the protocol (Xeloda). Dr. Laheru mentioned that this would be significantly tougher and that he recommended Gemcitabine alone. Given our mom's condition, I think everybody agreed that it was best not to put her through something too difficult. We begin next week - on Monday my mother will get a subcutaneous port and her treatment begins on Thursday. Under this schedule she will be done by mid September. Dr. Laheru also mentioned that there's still a good chance that the Hopkins vaccine booster trial will begin sometime this year and that we can try that after the chemotherapy is done.

It was also very nice to meet our friend face to face at Hopkins who has followed a similar battle over the last 6 months. She's been doing a very similar treatment plan as our mother so we have been comparing notes via email. We couldn't believe how great she looked even after having been through so much.

Bleeding Scare

The last few days our mother complained of stomach pain which she thought was indigestion from eating spicy foods. This started two or three days ago. She also mentioned to me on the phone that her blood pressure was very low and that she had stopped taking her blood pressure medicines. I spoke with her yesterday afternoon and no alarm bells went off since we thought it was related to the foods she ate. We were very wrong. Last night she vomited blood and she vomited blood again when she woke up. She was pretty near unconscious this morning and our father called 911 to take her to the hospital. She was admitted in the ER for internal bleeding and they started giving her transfusions. They said she had lost 3/4ths of her blood. This was also very dangerous since it strains the heart and she has suffered from heart problems. Extremely scary situation. The doctors performed an endoscopy and thankfully the source of the bleeding was easily found in two ulcers near where the Whipple was performed. The doctor cauterized them and she is doing fine now and should be fine. We need to be much more careful in the future. Maybe she should also increase the protonix she is taking.

CA 19-9 Results

My sister called Picozzi's office last Monday for the CA 19-9 results. The number came out very low at a value of about 3. So Dr. Picozzi said that it is unlikely that the cancer has returned. He said that a biopsy is the only way to really know but that it's probably better to simply follow the lesion via CT. He indicated that this probably wouldn't change my mother's current treatment plan in any case. My mother then went to see Dr. Laheru on Wednesday. Dr. Laheru concurred that the CA 19-9 results were reassuring. Dr. Picozzi had indicated that my mother could begin her next phases of chemo around the middle of May but Dr. Laheru thought my mother should regain more of her strength before beginning. So we didn't get any details on what treatment plan she would use and a follow up was scheduled for June 7. Dr. Laheru also ordered another CA 19-9 just to double check. The results came back at 23. We assume that this is also OK because it is in the normal range. We are all feeling somewhat relieved now and are hoping that this was all some anomaly on the CT scan. My mother is still suffering from indigestion after eating.

Troubling News

So - it's not what I wanted to hear and I don't know how concerned I should be at the moment. Here's a summary of our appointment with Dr. Picozzi that I sent to my sisters. I pray that this is all due to "sequela of radiation therapy".

- Mom had blood drawn for her CA 19-9 this morning and then had her CT scan. Then we saw Dr. Picozzi this afternoon. I picked up 2 CD copies of Mom's VMP scans (both the Jan and the current one) and also have copies of the CT reports. I will give these to Dad along with Mom's other records so that he can bring them to Virginia. I think we should give Dr. Laheru a copy of the CT CD on the May 10 visit so Hopkins can look at it as well. Maybe Laheru will also want to do another CT scan.

- The CA 19-9 tumor marker test results will not be in until next week on Monday. Recall that Mom's CA 19-9 pre-surgery was in the 800s I think. In Dec., the Hopkins CA 19-9 showed a value of 15.9 I believe. In Jan., the VMP CA 19-9 showed a value of 7. Note that the tests have an amount of variation - i.e. 2 tests on the same day could show some variation (I didn't ask how much). So we shouldn't be too alarmed if it is higher than before but we should hope I think that it is below the normal range of 37 I think. Anyways, when we get the results from Picozzi we should ask him how to interpret it and what course of action to take.

- Mom's Chest X-Ray was normal. CT scan though revealed an area on the liver that he said is "less homogenous" with no defined boundary. This area was there on the Dec. Hopkins and Jan. VMP scans but has grown in size. It could be "suspicious" for metastatic disease. He said that he discussed this with the radiologist and that their opinion is that if the tumor marker CA 19-9 tests are still in the normal range, then we can just continue to follow the area via periodic CT scans. If the marker is not in the normal range then he would recommend having the area biopsied. This would not be good news. I've put the radiologist report at the end of this email.

- Mom's potassium level was somewhat low. Also her white count was still a little low (about the same as when she left). He said it was not dangerously low but that we may need to think about using Neupogen (sp?) during the next chemotherapy rounds.

- I asked how often that Mom should do follow up marker bloodwork and CT scans. Dr. Picozzi recommended that we do the blood marker CA 19-9 about once a month. We should do a CT at least when her next course of treatment is done and maybe one in the middle. Her next course of treatment is about 3-4 months long.

- I asked if we need to transfer records to Hopkins. Dr. Picozzi said that he will be writing and sending a letter to Dr. Laheru directly that will summarize Mom's condition and his recommendations. Dr. Picozzi did not think that Dr. Laheru needs any other medical records. So if we can give to Dr. Laheru the CD with the CT scans and maybe make sure he verbally knows about the results of the CA 19-9 tests, I believe that will be adequate.

- Dr. Picozzi thinks that Mom should start her next course of treatment by the middle of May. She should be strong enough to begin at that point. He recommended that we choose between the following 2 protocols. a) 5FU via continuous infusion pump with 2 6-week courses separated by a 2 week break in between. (this is the same drug mom got from the pump in the first phase) b) Gemcitabine + Taxotere given by IV for a few hours once every 2 weeks with a total of 8 treatments over 16 weeks. Dr. Picozzi mentioned that Mom's white blood cell count should be stimulated by giving Neupogene (sp?). He couldn't clearly recommend one over the other. The advantages of the 5FU are that it is "easier" and proven since this is what was used in the original VMP results that have been documented. The advantages of the GemTax is that it seems more promising in that it has been shown to be more effective in advanced pancreatic cancer for metastatic disease. Whether it is better in the adjuvant therapy case is not yet known. However, it is "harder" than the 5FU and has more side effects like nausea and hair loss. If Mom's first phase of the VMP was a 10 in difficulty, then the 5FU is rated as a 2 by him and the GemTax a 4.5.

- Mom should increase her Protonix to 2x a day since she is feeling indigestion. A part of the discomfort might be caused by scarring due to the scar and radiation. Mom was also prescribed Potassium supplements which she is to take until she sees Dr. Laheru and then it can be reassessed.

RADIOLOGIST REPORT

CT of the abdomen without and with IV contrast, pancreas protocol, May 2, 2006. The patient received 125 cc of Isovue-370 has IV contrast. Compared with the prior study dated January 5, 2006.

Findings:

There is an ill-defined low attenuation lesion in the left lobe of liver near the biliary anastomosis. This measures 2.4 x 2.1 cm, image 75 series 4. Previously it measured 2 cm x 1.8 cm. On an earlier study dated December 28, 2005 from Johns Hopkins this lesion measured approximately 2 cm x 1.1 cm.

There is a comma shaped fluid density lesion in the liver which measures 3.2 x 1.1 cm, image 79. This has increased in size significantly compared to the earlier studies. This has the appearance of a dilated duct or perhaps a pseudocyst.

There is diffuse decrease in attenuation in the medial aspect of the liver. There is increasing soft tissue in the periportal region with loss of the fat in this region.

No masses identified within the residual pancreas. There is no dilation of the pancreatic duct.

The portal vein splenic vein and SMV are patent.

No adenopathy is appreciated.

Impression:

Increasing size of irregular low density lesion in the left lobe of the liver suspect for increasing metastatic disease. Increasing ill-defined soft tissue in the periportal region and diffuse decreased density in the medial aspect of the liver. It is unclear this is due to sequela of radiation therapy or progression metastatic disease and clinical correlation is necessary.

Comma shaped fluid density lesion in the liver which is increased in size and may be an isolated bile duct or pseudocyst.

Recovery

Mom and Dad made it to Kyle's First Birthday!

It's been about 4 weeks since our mother finished the first phase of the VMP at Virginia Mason. She's looking a lot better but still not quite back to where she was prior to beginning the treatment. Mainly she suffers from indigestion - she's scared to eat too much because she feels like her stomach gets hard and stuck. So she hasn't gained too much weight back. Her hair also has continued to thin. It's almost time to go back to see Dr. Picozzi to restage. We're praying that everything is OK. After the checkup, our mother and father are going to go back to Virginia and continue her treatments with Dr. Laheru at Johns Hopkins.

Finished VMP Phase I

The last week of the VMP was pretty difficult although I think my mother was in a little better condition than when we began the break (she was suffering a lot at that point). She suffered with nausea and was barely able to eat much. At least the sores on her lips didn't recur. After the last week of chemo, her white blood cell count was low again so Dr. Picozzi cut out the last three days of her chemo and she only had radiation for those last three days. Mom's last day of radiation was Friday, March 24. The radiation team was so nice - they gave her a certificate of completion and we rang a bell to signify she was done with that round.

She also developed a low grade fever during the last days of her treatment. We were a bit worried because having an infection when your white blood cell count is low can be extremely dangerous. So we took her temperature very frequently and it generally varied between 99.5 and 100.5. It reached 100.8 at one point. The VM team's "when to call" sheet stated only to call when fever reached 101 so we never called in off hours. We saw Dr. Picozzi on Monday and he decided to run a battery of tests to check for infection just in case (since we were planning to leave Seattle on Wednesday). All the tests were fine and he gave us permission to leave! We will return to Seattle at the beginning of May for a CT and restaging and to plan the next phases. Dr. Picozzi said the next phases are "much easier" than what she went through. I really hope that is true because I don't think my mother can go through that again.

It has now been a little over a week since her treatment finished and I would say that today is the first day I think my mother feels somewhat OK. She's still been suffering from nausea and indigestion but everyday seems just a little better. I hope the trend continues and that she can make a full recovery as soon as possible.

Restarting VMP

The break was very helpful. Our mother still felt pretty lousy the whole time but she was obviously a lot better by the end of the break than she was when she started. Her lips had healed and her appetite was a lot better. We went in yesterday and have restarted to finish the last 10 days of the VMP. Our father had a bad case of vertigo last weekend. He couldn't move - the world was spinning and he threw up several times. I wasn't here but my sister who was visiting called in the paramedics in case it was a stroke. He ended up being fine after a couple of hours. We're debating when he needs to see a Dr. but will probably wait till they get back to Virginia in a couple of months. He's been extremely stressed out taking care of things and that probably was a large contributing factor to the attack.

VMP Break

This is my mother and father right before starting the VMP at Seattle's wharf.

We just saw Dr. Picozzi this morning and the weekly blood tests showed that Mom's white blood cell count is too low. So she's going to take a week break off of everything. Apparently, this is more common than not - 2/3 of patients going through the VMP require a break. So we're not too concerned about it diluting the effects of the treatment. In addition, she will have reduced strengths of the drugs when she starts again next week. Once we start, there will only be 10 days. I also asked Dr. Picozzi about the next steps. He said Mom would rest about 4 weeks or so after phase I and that she would return for tests to restage the tumor. After that we would discuss the next phases where several options would likely be offered. I think it will be a good break for our mother since she's been suffering quite a bit these past few days.

Third and Fourth Week on VMP

Starting around the 4th week, things have started to get very difficult for my Mother. I went back home and my sisters came to Seattle to help out. On the third week checkup, my mother's white blood cell count was fairly low, but Dr. Picozzi said we could still continue. My mother started to suffer from "nervousness" or "restlessness" and had some headaches. This got progressively worse but it seems it was a result of the compazine. They switched her off of that and put her on Zophran every day and that seems to have helped a lot. She also has had problems sleeping. She generally has been a light sleeper but at the start of the treatment she slept so well that she was wondering what had changed. So she's trying more Lorazepam and some Ambien to see if that helps. Her lower lip continues to be fairly raw. For a few days she didn't want to really eat anything due to nausea and a stomach ache. We upped the Protonix and that may be helping. I would say that she is pretty miserable at this point and we are looking forward to all of this being behind her soon.

Second Week on VMP

Mom is still doing all right. Dr. Picozzi does a check-up and bloodwork every week and determines whether she can continue without a break. So far, her counts are fine. The worst thing appears to be mouth ulcers and sores on her lips. They prescribed a "magic mouthwash" that has an anesthetic and we're trying various lip ointments including biotene gel and chapstick for lip sores. She has moderate nausea but this seems to be controlled by the three nausea medications she is taking. They have started giving her IV fluids an additional twice a week to make sure she is hydrated. So far everything is fine - Dr. Picozzi said week three and four are critical in terms of symptoms so we hope that she continues to be able to tolerate the treatment. The good news is we are about 40% done by now with the first phase.

First Week on VMP

My mother has finally begun the VMP with Dr. Picozzi. The first stage of the VMP consists of 3 types of drugs combined with radiation. They inserted a PICC line into my mother's arm which is a small catheter that runs from the arm to just above the heart. This is used to infuse the chemo drugs and IV fluids. They have hooked up a pump that my mother carries around with her for continuous infusion of 5FU. She receives an IV bag of Cisplatin once a week along with 3 bags of IV fluids to hydrate her. She receives subcutaneous injections of Interferon Alpha three times a week. Finally, she gets radiation for a few minutes every day. The first day of treatment she received all 4 portions of the treatment. At night she suffered from severe fever (up to 103) for several hours but Dr. Picozzi said that is not an uncommon side effect of the interferon especially on the first shot. Her second shot was much better and she didn't get feverish at all. Mostly, she is naseous and fatigued and has been sleeping a lot. She's already not doing well so we're quite worried it's going to get really hard towards the latter stages. I'm hoping she doesn't suffer too much.

Decision

My mother has decided to go with Picozzi at Virginia Mason (with some strong hinting on our parts). I think this is the right decision based on the preliminary results they have had there but I'm really apprehensive about how difficult it is going to be for her. We're now setting up the logistics. She'll probably be beginning treatment at week 10 which makes me a little nervous but Picozzi seemed to think that would be OK. We'll probably do the latter phases locally or in California.

Consultation with Dr. Laheru

We went back to Johns Hopkins to finally meet Dr. Laheru. This is the last oncologist we have on our list to meet. My mother asked him what kind of name "Laheru" is and he replied that it is Indonesian. Dr. Laheru went over my mother's history and then went over his recommended treatment plan. This would be radiation with Xeloda and possibly Tarceva followed by Gemcitabine alone. One thing I felt is that the Hopkins folks stress that my mother's prognosis is very good from surgery alone and that this may have some implications for her treatment plan. Dr. Laheru also mentioned in response to our question that Xeloda was probably equivalent to 5FU but more convenient. He said that if you drew and tested blood after somebody had done 5FU vs. Xeloda, no doctor would be able to detect any difference. He also mentioned that the levels of Xeloda that they would give would also be treating the cancer "systemically" right from the start.

We also talked a lot about the GVAX vaccine. Apparently, they are planning a booster study that they are going to open sometime later this year. He said that my mother would be eligible to receive the vaccine under this study although this would happen after she finishes her chemotherapy. I asked if there were any ways to offer it sooner and he said unfortunately there was no way that would be possible. I really hope that this study gets launched and that the criteria are such that many people can benefit from it.

He mentioned that Hopkins might be able to offer the VMP but it seems like it might be a better idea to do the first part of the protocol at Virginia Mason since they are so experienced with it. We could do the latter part at Johns Hopkins. He wouldn't recommend using Avastin as that is too toxic.

My mother really liked Dr. Laheru and mentioned afterwards a few times that we should use Johns Hopkins. As I mentioned, the last one always seems to be winning. Dr. Laheru stressed that treatment should begin soon (we are at 6.5 weeks post whipple). We now have to make the big decision this weekend.

Dr. Cameron sent us a very thoughtful thank you note for the scarf today.

Consultation with Dr. Picozzi

On January 4 we went to Seattle to meet Dr. Picozzi. Mom did very well on the trip. We stayed at the Inn at Virginia Mason which is attached directly to the hospital. The restaurant at the Inn was very good but the prices reflect that. Anne had scheduled us for bloodwork, a CT scan, a chest X-ray and finally a consultation with Dr. Picozzi. Virginia Mason seemed small in comparison with Hopkins but the atmosphere in the Buck building was very pleasant. The cafeteria was reasonable but on that day the food looked better than it actually tasted. At the Hopkins cafeteria I thought the food tasted better than it looked.

We finally had our chance to talk to Dr. Picozzi. He started off by asking us about our backgrounds (schools, jobs, etc.). He seemed really interested in this and I'm not sure if it was because he wanted to make us feel comfortable (people like talking about themselves) or because he liked to get to know his patients. My father, sister and Dr. Picozzi had all gone to Yale and he seemed very pleased with that.

Dr. Picozzi mentioned several things of interest:

• Without adjuvant treatment, the cancer recurs locally 30-60% of the time and recurs systemically 80% of the time.
• It's better to treat systemically sooner rather than later (VMP does both at early stage).
• The standard chemotherapy vs. standard chemoradiotherapy give about the same survival rates.
• He's wary about Xeloda as opposed to using 5FU since there have been no tests to confirm that it is as effective.
• VMP gives long term survival of 40-50%.
• Results at Virginia Mason may be slightly better than those in the initial publication.
• He's made the VMP less toxic recently and believes that the side effects are no worse than standard treatment if you do the VMP at Virginia Mason with their supportive care.
• Only one person dropped out and there have been no deaths.
• Average age of patients treated under VMP is 64.

This is the serene and comfortable waiting room at Virginia Mason.

Doctor Picozzi also mentioned something interesting about my Mom's condition we hadn't heard before. He said that her CA 19-9 pre-surgery was very high - 801.7 and that some institutions would not even operate with such a high number. This might indicate that the chances of some "occult cancer" being around is higher. However, he said that her current CA 19-9 level of 15.7 was a good sign that maybe all the cancer was removed. He also mentioned he had floated the idea of starting a trial with Laheru where they would layer the GVAX vaccine on top of the VMP protocol. I think that would be a fantastic idea.

We were pretty happy with the visit. Dr. Picozzi seemed very knowledgable and very kind. We seem to like the Doctor best that we have seen most recently for some reason :->. If it's true that doing the VMP now is not much more difficult than standard chemoradiation, then it seems like a great approach. My mother definitely needed to hear from Picozzi that the protocol was not too toxic for her and that it was not much more difficult than the standard treatment. We spent the rest of the day looking for a place to stay should we decide to come to Virginia Mason for treatment.

New Years and Mom's 70th Birthday

My mother is a New Years baby so we celebrated New Years and my mother's 70th birthday on the same day! She has been doing great since Christmas - just in time to enjoy the holidays.

Consulation with Dr. Herman

On December 28 we went to Johns Hopkins to meet with Dr. Herman. Dr. Herman is a radiation oncologist at Johns Hopkins. He and his resident Dr. Fox have been really helpful and accessable since we met them in the hospital after my mother's Whipple procedure. Dr. Herman seems like the kind of guy you could easily go and grab a beer with.

My mother had her first post-operative CT scan and bloodwork done in the morning at the Weinburgh building. We met Dr. Herman and Dr. Fox afterwards. As usual, he was really helpful:

• He mentioned Hopkins had participated in the VMP trial but stopped after 4 patients because the coordinator quit and it was a high maintenance trial. Of the 4 patients, 2 were still completing the trial but the other 2 had already had recurrance. One of the knowledgable nurses mentioned the VMP seemed to be about twice as hard as the normal regimen but that people had recovered very well a month after the intensive part was completed.
• Herman recommended talking directly with Dr. Laheru regarding the treatment plan to be offered by Hopkins. We had finally set up an official consultation with Dr. Laheru so we would just wait to see him then.

Dr. Herman sent me the results of the CT and bloodwork later. Mom's CT scan was clean and her CA 19-9 dropped to about 15.7 which was well within normal range. Great news! (Although this doesn't mean the cancer is gone).

Christmas

The whole family got together for Christmas. Although Mom had one bout of vomiting after we saw Dr. Cameron on the 21st she had felt better from the 24th just in time to celebrate Christmas!

Follow Up with Dr. Cameron

On December 21 we went for our 2 week follow-up visit with Dr. Cameron. My mother had bought him a scarf and she had bought a pen for Dr. Meneshian (Dr. Cameron's fellow). Grace had gone through a fair amount of pain buying and returning things and working with my Mom over the phone from the mall while they finalized what to get.

We arrived at 1pm and ended up waiting 2 hours to see him. We realized that Dr. Cameron has the following brilliant (for him) scheduling strategy: Tell all patients to arrive at exactly the same time (1pm) and then it's first come first serve to see him. I suspect he does this so that he maximizes the use of his time and because he can (he is one of the best surgeons in the world). I doubt any of his patients complain. He came in and looked at my mother's incision and said: "Your incision looks great - you must have had an excellent surgeon". I bet he says that to all his patients :->.

We asked him about his recommendation for adjuvant therapy and he confirmed what we were thinking. He mentioned that the two "bright spots" in this area are Dr. Picozzi's Virginia Mason Protocol and Dan Laheru's vaccine. He had mentioned though that the VMP was very toxic and that he wouldn't hesitate to send somebody to Seattle if they were in their 50s. But he said we should definitely still see Dr. Picozzi since I told him we already had an appointment lined up. My Mom, who has been really scared of chemotherapy and radiation has clung to those words in defense and has kept repeating that the VMP is for younger people. We've asked her to keep an open mind and wait to talk to Dr. Picozzi.

Next came the all important gift giving portion of the visit. My mother gave Dr. Cameron the gift and asked him to give the pen to Dr. Meneshian. She was really worried because she originally got the pen for Dr. Cameron and the scarf for Dr. Meneshian. But my father remembered that Dr. Cameron already had a really fancy nice pen so she decided to switch them. However, the pen was more expensive than the scarf and my mother was really worried for the next few days that somehow Dr. Cameron would figure it out and get upset. My mother tends to worry a lot about these kinds of things.

In retrospect, we're really thankful that we were able to have Dr. Cameron handle my mother's Whipple procedure. This is probably among the most difficult procedures and Dr. Cameron has done more of these than anybody alive. He was chief of surgery at JHH. Dr. Marshall called him "The Master". Dr. Picozzi called him "The best surgeon in the world". An ICU nurse mentioned the ICU was getting full and they were moving patients out but my Mom was OK since she was Dr. Cameron's patient. Another nurse mentioned that none of Dr. Cameron's patients are supposed to get infections or complications so they work very hard to avoid them. He puts many of his patients in beautiful Marburg. And most importantly, there is a huge imposing painting of him in the lobby of Blalock.

Mom loves telling people we had the best surgeon in the world and that we stayed on the same floor with famous people and an Arab prince. I think we all derive a lot of psychic benefit from that.

The Dream

My mother had been feeling miserable with nausea and vomiting since the Whipple procedure. On the 19th she took a nap and woke up from a very interesting dream. She said she dreamed that she was going to the bathroom (#2) and that lots of stuff was going down (as she described it). She woke up feeling a lot better and this marked a huge turning point in her recovery!

Consultation with Dr. Marshall

My sister Grace had heard about Dr. Marshall through a business contact. He is a famous professor/oncologist at Georgetown's Lombardi Cancer Center. Georgetown is about 45 minutes from my parent's place so it is one of the "local" oncologist options. In the morning prior to leaving, my mother had a terrible sharp pain in her stomach. I was worried she wouldn't make it but she took some Malox and somehow she found the strength to go with us. We were anxious for her to come with us because we didn't want to miss this opportunity to talk to Dr. Marshall.

Dr. Marshall and his assistant Dr. Amy Rankin were extremely nice. They made us feel very well taken care of which was a nice contrast to relying on the surgeons. Dr. Marshall was very concerned about my Mother's condition and prescribed some IV fluids. A blood test revealed her potassium was very low so they also infused some potassium. He prescribed a lot of medication to help my mother feel better including fentanyl patches (better to control pain than using oral meds if you are vomiting), potassium supplements, an anti-nausea steroid, etc. It's a good thing my mother went to see Dr. Marshall that day because she was really dehydrated and the IV fluids made her feel a lot better. One advantage of seeing an oncologist early on after the Whipple is that you have somebody who can prescribe meds and take care of you. We really liked Dr. Marshall because he paid a lot of attention to my mother's comfort.

We also discussed his take on adjuvant therapy. His philosophy boils down to starting with chemotherapy using Gemcitabine. Radiation would only possibly come later on after several months. He also believes in long term maintenance using a low dose of some medication (I forget which). To support his approach he referred to the European study which showed that radiation was of questionable benefit and that chemotherapy alone proved superior. The Hopkins doctors had discounted this study saying that the radiation may not have been applied effectively. Dr. Marshall also believes that it is more important to focus on treating "systemically" to prevent distant metastasis first rather than treating locally to prevent local advance. The reason he presented is that the distant metastases are what kill you. His take on the Hopkins approach was that they had a very strong radiation oncology department so this explains why it would figure prominently in the treatment plan. We also asked him about his opinion on the Virginia Mason protocol. He said that it was a single institution study that hadn't been verified and that there was a tradeoff with the significantly higher toxicity.

So the plot thickened now with three major options on the table:

• Hopkins approach: radiation w/ Xeloda followed by chemo w/ Gemcitabine (maybe Tarceva)
• Georgetown approach: chemo w/ Gemcitabine maybe followed later with radiation.
• Virginia Mason approach: radiation w/ 5FU/Cisplatin/Interferon followed by Gemcitabine (maybe Erbitux)

BTW - the cafeteria at Georgetown was excellent. It's across from the Lombardi Center.

Harassing the Surgeons

I definitely wore out my welcome with the GI Gold oncall team at JHH. They had given me a sheet that said to call if my mother experienced nausea, vomiting, fever, etc. So I dutifully called every time she vomited (which was really frequent for the first 2 weeks after the Whipple). At first they would return my calls fairly regularly. After about a week though, I never heard back from them. I suppose I got blacklisted.

Also, I had been calling Dr. Cameron's assistant Bonnie periodically to ask for appointments, prescriptions and other misc. things. She was also our first point of contact when my mother had an issue during business hours. One morning, at around 6 am I called because my mother had vomited a lot. In the past, when Bonnie was not around, Cameron's line would be routed to some other assistant who would cover for her. So this morning, when a man answered the line, I asked for Bonnie and he gruffly answered: "If you call back at 8:30, you can talk to Bonnie". Then he proceeded to quickly hang up before I had a chance to say anything. As I hung up, it dawned on me that that was Dr. Cameron! He had never answered his line before so I just found it completely unexpected that he would be picking up on his own phone line.

I think it's best overall not to rely too heavily on the surgeons for post-operative care. They are more than happy to hand you off to somebody else. It's probably a good idea to build a relationship early with an oncologist or other kind of doctor who can care for the patient. I understand it too - they are too busy doing surgery.

Post-Whipple Misery

The day my mother was discharged she felt fairly nauseous. We asked for some anti-nausea medication but were told that they don't like to prescribe that as it may mask real problems. Once we got home things got pretty bad. For about two weeks my mother could barely get out of bed because of nausea. Every few days she would vomit what seemed like all the fluids and food she had managed to get down for the last few days. We were really worried that there was some kind of blockage. At one point Dr. Meneshian was ready to re-admit my mother but we heard the next day that Dr. Cameron had nixed that idea. At least he prescribed metoclopramide which seemed to help with the nausea.

My father also went through a lot trying to keep my mother comfortable. For example, he had to really strive to meet my mother's extremely exacting standards for food preparation. Eventually, he resorted to bringing the ingredients up to her and letting her determine how much of each to add so that she would not be able to accuse him of adding too much or little of something.

Consultation with Dr. Patel

My sister Grace and I went to visit Dr. Patel, an oncologist in Fairfax. This was our "very local" oncologist option because she's about 20 minutes from our parent's house. My mother was unable to go because she was feeling so ill. When we showed up without the patient they were a little confused but we were able to eventually see Dr. Patel. Dr. Patel was very kind and explained things very nicely to us. She offered the standard treatment of radiation with Xeloda followed by chemotherapy with Gemcitabine. We asked her about the VMP and she rated the VMP as an 8 out of 10 on the difficulty scale whereas the standard treatment was a 2.

Next Steps and Adjuvant Therapy

So far, everything was going as well as it could go I suppose. We felt lucky that our Mother was able to have the Whipple and that her path report came out reasonably good. However, the odds are very high for a recurrance with surgery alone. The stats seem to indicate an 80-90% recurrance rate for surgery alone. Now we started to investigate the different adjuvant treatments available.

This part was very confusing. We spent a lot of time on the web and also calling up different institutions that were running clinical trials. One survivor from the Hopkins message board was also very kind to share her experiences with the Virginia Mason Protocol. The two things that stood out in our research were Dr. Picozzi's Virginia Mason Protocol and the Hopkins GVAX Vaccine. Both of these treatments have had very interesting preliminary results from single institution trials. Standard treatment seems to provide overall 5 year survival rate of about 15-20%. Johns Hopkins has data showing that resected patients without spread have 5 year survival of 40%. I'm not sure if my mother falls into that category. The Virginia Mason Protocol (VMP) shows an overall 5 year survival rate of about 45-50%. The patients in the study also mostly had poor pathology reports so that seemed pretty impressive. The Hopkins Vaccine showed 1 and 2 year survival at rates even better than the VMP. The downside that we have heard about the VMP is that it is very toxic and difficult to get through. The downside with the GVAX vaccine is that it does not seem to be available at the moment. The other two drugs that sounded interesting were Avastin and Tarceva. Both of these have had some success with treating advanced pancreatic cancer and are currently in testing for adjuvant therapy.

The Hopkins oncologists were recommending what I consider fairly standard treatment. They recommended radiation with Xeloda followed by chemotherapy using Gemcitabine. We could participate in a trial to add Tarceva as well.

We decided to set up appointments with oncologists at Georgetown, Johns Hopkins, Virginia Mason and locally at Fairfax. It was time to go oncologist shopping.

Our mother has been very anxious about the chemo plan. But she's preparing herself and has already bought a very nice wig.

Recovering at the Marburg Pavilion

One really nice thing about being a patient of Dr. Cameron is that his patients are sometimes put in the Marburg Pavilion (I'm not sure if this happens all the time though and probably depends on availability). Marburg is the luxury section of the hospital and it really is beautiful. There are hard wood floors and lots of wood paneling. The nurse staff is really kind and attentive. There's also a very comfortable guest room with couches, a TV, coffee, tea, snacks and most importantly a computer. I did a lot of research on adjuvant therapy on the computer. While we were there we saw a very famous celebrity and also an arab prince with his entire entourage!

My Mom seemed to recover quite quickly while we were in the hospital. She was doing well with her breathing exercises and walking (which is very important). She had started to eat a little bit of solid food after several days. Her biggest problem was nausea but they kept that under control with some medication.

Dr. Cameron is a very early riser. He would usually come by around 5:30 am to visit my Mother. He would breeze in and generally say to my Mother - "You're doing great" and breeze out. Sometimes he would be with Dr. Meneshian and some other fellows or residents. During my Mother's stay, Dr. Cameron left to go to a conference. When Dr. Cameron was not around I noticed that Dr. Meneshian would do his rounds at around 9am. I'm sure it's nice to have a break when the boss goes out of town.

Pathology Report

After the Whipple, we waited anxiously to hear about my mother's pathology report. They take all the removed tissue to the lab and perform tests on it to see how well the surgery was done and whether there was any spread. Getting the results is a pretty scary moment because this will give you an idea of how advanced the cancer is. On Dec. 2 we finally got the results.

• 3.5 cm tumor on pancreatic head of type ductal adenocarcinoma
• moderately differentiated
• lymph nodes negative for tumor
• margins negative for tumor
• perineural invasion present

I think this put her at a Stage IIB which was better than we originally thought. We were relieved to hear the margins were clean and that the lymph nodes were negative. However, the size of the tumor, nerve spread and moderate differentiation are not good.

The Whipple Procedure

This is our family the day before my mother's Whipple.

Dr. Cameron scheduled my mother's Whipple Procedure for November 29, 2005. My sister Linda said "pancreaticoduodenectomy" to Dr. Cameron and he was very impressed. I'm sure the surgeons and oncologists have a good time hearing people mispronounce all the crazy procedure and drug names. The Whipple itself is very complicated. It can take anywhere from 6 to 10 hours.

My mother was really scared about the surgery and mentioned several times that this whole thing seemed like a dream.

They took my mother away at around 6 am and the family walked with her to the Weinburgh building. We were able to stay with her for a bit while they prepped her for surgery and we met the anesthesiologist who was very kind. Around 7:30am she was off to the OR and we were sent to the waiting room. The Weinburgh waiting area is really nice. There are comfortable couches and TVs around.



They told us that the OR nurse was going to call us every hour or so to give us an update on how things are going. The first update came around 8:30am. The nurse said that my mother was doing fine and that she would call again in about an hour or so unless the operation was over in which case Dr. Cameron would come speak to us. We knew that it would be very bad if Dr. Cameron came out early as that probably meant that they had aborted the Whipple. It's only after they open up the patient when they make the final determination if the tumor is resectable. So the next phone call was nerve racking. At 10:10am the nurse called again and we all looked at each other since nobody really wanted to take it. My sister Linda went to take the call. When she was on the phone she looked upset so I was really worried. But she came back and said that everything was going fine and they were going to proceed with the Whipple! We were all unbelievably relieved.

After about 6 hours into the surgery Dr. Cameron came out and found us. He was in his green surgical outfit. He said that everything went very well and that as far as he could tell they had removed the entire tumor. I guess they do some pathology tests as they are removing the tumor to ensure that everything was removed. He said they removed about 1/3 of my mother's pancreas and about 1/3 of her stomach. We thanked Dr. Cameron profusely. We were told we could see our Mother in the ICU in a few hours after they closed her up.

My mother spent two nights in the ICU. When we first saw her she was in a lot of pain and also was suffering from a lot of nausea. We had one big scare where her hemoglobin levels were very low and they thought that it was either a faulty test or that it could be internal bleeding. The surgeons were ready to go back in if it was the latter case. Thankfully, the test turned out to have been wrong and a different kind of test confirmed her levels were OK. By the third day she was actually looking reasonably good and we were all happy that she was doing so well.

Consultation with Dr. Cameron

I called Dr. Canto's assistant on Monday to make sure she had done the referral to Dr. Cameron. Bonnie, Dr. Cameron's very nice and helpful assistant called me early Tuesday to schedule. She mentioned that Dr. Cameron's first available appointment was on November 29. I mentioned that we were feeling under some time pressure since diagnosis was so late and asked if there was anything that might open up earlier. She said she would check and call me back later in case there was a cancellation. Bonnie called back around 10 am and mentioned we could see Dr. Cameron today! I learned that it always helps to push and be creative with respect to scheduling - there are often cancellations or other ways to expedite getting an appointment.

Mom, Dad, Grace and I drove back over to JHH for our second visit. Dr. Cameron sees patients at the outpatient center across from the McEldery garage. It was very empty in the waiting room probably due to the holidays. We waited in the examination room and Dr. Cameron came in and introduced himself. He went over my Mom's history with her and she mentioned that she was shocked and never expected this to happen to her. He said that nobody ever does. She asked if there was any hope and he replied: "Sure, there's hope!". We had a really great impression of Dr. Cameron - he seemed very confident and very sharp which was exactly what we wanted to see.

Dr. Cameron looked over her file and said she was a candidate for the Whipple! He said: "How about next Tuesday?". I was unbelievably relieved to hear this. On the other hand I think we were all stunned that scheduling it could be so simple and that it would happen so soon. So we went back home to spend the week together and prepare for the surgery. My father mentioned that we should pray that Dr. Cameron would not have some kind of stressful Thanksgiving family reunion and that he would come back relaxed and well rested for our mother's surgery.

EUS and CT Scan with Dr. Marcia Canto

Dr. Canto is a screening specialist for pancreatic cancer. She is from the Philippines and graduated from the University of the Philippines. We immediately felt a connection to her because our family lived for many years in Manila.

We arrived at JHH on the morning of the 18th and went to the 5th floor of Blalock. My mother had the EUS (Endoscopic Ultrasound) and was very nauseous after the procedure. They had given her morphine for pain and she really didn't react well to this. We then went to the basement for her CT scan and returned to wait to hear from Dr. Canto. Prior to the procedure Dr. Canto had asked my mother about her symptoms. She then mentioned not to worry about the procedure and that perhaps it was not even cancer. I think my mother secretly clung to this hope as we patiently waited for Dr. Canto to arrive with the results.

We waited a long time in a small consultation room and I was worried that this meant bad news. Dr. Canto finally arrived and confirmed that it looked like pancreatic cancer (adenocarcinoma). She mentioned the tumor was about 3.5 cm - larger than we had originally thought. However, she added that the cancer looked resectable which is excellent news as far as these things go. We told her we had already been in contact with a Hopkins surgeon but we asked her who she would recommend. She said: "If it was my mother, I would go with Dr. Cameron". In our initial discussions with the Hopkins surgical assistants, we had heard that once you choose a surgeon you cannot switch. We mentioned this to Dr. Canto and she said it was not a problem and that it happens all the time. She said she would refer us to Dr. Cameron! That was great news and we were happy with that decision. As Dr. Canto departed, Grace said "Salamat Po" which means "Thank You" in Filipino. Although my mother felt really nauseous all day, I think we felt guardedly optimistic that my mother could have the Whipple procedure.

On Monday, Dr. Canto's very kind assistant faxed over a copy of my mother's reports and confirmed that she had referred us to Dr. Cameron. Her CA 19-9 was 801.7. We also received the CT results which stated:

Large mass in head of pancreas consistent with pancreatic cancer with dilated pancreatic duct seen. Tumor appears to extend into the peripancreatic soft tissues. The patient's mass abuts the SMV and the portal vein but there is no definite evidence of invasion seen. Encasement of gastroduodenal artery defined.

1. Mass at the head of the pancreas compatible with pancreatic cancer. Minimal stranding of the mesenteric fat anterior to the mass, suspicious for tumor infiltration. Tumor involvement of the posterior wall of the gastric antrum cannot be excluded.

2. The splenic vein, portal vein, and celiac axis, and SMA are patent. The SMV is patent, but in very close proximity to the mass and possibly minimally compressed.

We weren't sure how to interpret the results but we thought this might put my mother at a Stage III which was worse than we initially hoped for. However, the results seemed to indicate she may still be resectable. In retrospect, going through Dr. Canto for the initial screening and tests was exactly the right thing to do. She had ordered the 3D CT scan (pancreatic protocol) and the EUS and was able to give us a referral to the surgeon we wanted. I believe that any surgeon at the very least would have required a 3D CT scan so going through the screening department first was time not wasted.

I think our mother went through another small bout of depression since we had more results showing that it was pancreatic cancer.

Getting Started

My sisters Linda and Grace had already been starting to do some initial research. Grace, who lives near my parents in Virginia, had spoken to Dr. Hong who wasn't very helpful - he had referred us to a Dr. at Georgetown to do an EUS/ERCP but the tests weren't scheduled till Nov. 22. We looked around and found a lot of information on the web. By far the best resource we found was the Johns Hopkins pancreatic cancer discussion board. There is no better resource than other people who are going through or have gone through this ordeal.

We learned that Johns Hopkins was one of the best places for Pancreatic Cancer which was great because it was located fairly near to my parents. We also saw that surgery was the best hope for treating this disease although only 10-20% of diagnosed patients are eligible for surgery (mostly because of spread or artery/vein involvement). So we began by trying to call the surgeons at Johns Hopkins directly to ask for some advice about how to proceed. I wanted to make sure we had all the right tests lined up to give the surgeons the information they would need to determine if our mother was a candidate for resection. I found it fairly difficult to work directly with the surgery department as a new patient. I heard a lot of conflicting advice from the assistants/nurses. One person said that we may not even need an EUS/ERCP and that the CT may be enough to determine resectability. Another said that we should proceed with the Georgetown tests and only call back after we had the results. I had asked if we could do the tests at Hopkins since I wanted to get in the "system" quickly and she had said that was not possible (this was not true at all). We felt a bit frustrated at this point with the conflicting info and lack of urgency.

So on Monday, Nov. 14 we started driving around to pick up all my mother's records. We picked up a copy of her CT scans and then stopped by Dr. Hong's office to pick up his records. Dr. Hong is a very strange man - we were not with my mother and I think he may have thought we were lawyers because he acted really spooked and was hesitant to give us her records even though I had a note. He wouldn't say anything for many minutes and just stood there - ultimately we got what we needed and drove over to Johns Hopkins. We figured in person was the best way to go. We had asked Dr. Hong if he would do a referral to Dr. Cameron and all he was only willing to write a short note for us.

We had spoken to some Dr. friends and one of them had mentioned Dr. Canto at Hopkins as being a very good gastroenterologist for pancreatic cancer. So we decided to try and find a surgeon to look at our mother's CT scan but also drop off information with Dr. Canto. We got to Hopkins and went to Blalock and walked around the floor where the surgeon's offices were. We ran into an administrator who was really helpful and referred us to one of the surgeons. We had wanted to maybe see Dr. Cameron, but we were introduced to the assistant of another surgeon there. She mentioned that if we went with the other surgeon we couldn't switch later on. So we had to decide if we wanted to try and pursue Dr. Cameron through some other route (he requires a physician referral) or go with this surgeon. We had lunch and called a few people and decided that it would be OK to go with the other surgeon. We left the films with the assistant and then proceeded to the gastro department to leave the records for Dr. Canto. The surgeon's assistant mentioned we would hear the surgeon's initial thoughts on resectability in a couple of days.

Dr. Canto's nurse called us to schedule a 3D CT (pancreatic protocol) and an EUS on Friday the 18th. She mentioned the surgeons would need this data no matter what. We felt somewhat relieved because we were officially in the system at Johns Hopkins and things were finally moving along. We never heard from the surgeon. In retrospect, this all worked out fine and it seems like going through Dr. Canto was the best route to go.

Diagnosis

This is our mother, Kyung Wha Jhong, about a week before her Whipple Procedure. Mom was born on 1/1/1936. She and Dad had just moved to Virginia in February after our father retired from working in Korea. We were happy that they were finally in the US and our family had been planning to celebrate her 70th birthday with a nice trip to Los Cabos, Mexico. Somehow, we always have bad luck with trips to Mexico. On our Dad's 70th birthday we had tried to go to Cancun. But our mother's mother had turned ill and we had to cancel the trip. So this is the second time this has happened and we have decided never to go to Mexico for a family vacation again (bad luck).

Mom had been experiencing stomach pain since April of 2005. This slowly got worse and the pain also spread to her lower back. Her appetite decreased and she lost about 10 or so pounds by the time she was diagnosed in November. We tried early on to prod her to see a Doctor but she was resistant since my father and her were so busy with the relocation. She finally got around to seeing a general practitioner in July who referred her on to Dr. Hong, a gastro doctor. Dr. Hong recommended an endoscopy and a colonoscopy but refused to perform them until my mother received clearance from a heart doctor. She has suffered from some valve problems for many years. So my mother and father had to find a new heart doctor in the area and get a clearance letter. My mother finally had the procedures done in late October and the Doctor said she was very "clean". So my mother asked why she had the pain and she mentioned that a doctor in Korea had thought she might have gallstones. In response to this, Dr. Hong recommended and ordered a CT scan.

The results came back on November 9. I was in Mexico at the time on vacation and my sister Linda called me with the bad news. My radiologist brother-in-law Mike was on the trip with me and mentioned that pancreatic cancer was pretty grim. We found the horrible stats on survival rates for this disease (4% 5-year survival). We were all shocked and felt a lot of sadness that day.