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.