Sunday, August 11, 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.
Saturday, December 22, 2012
Monday, October 29, 2012
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.
Monday, November 15, 2010
Thursday, October 15, 2009
Sunday, August 02, 2009
Sunday, March 29, 2009
Sunday, November 16, 2008
Tuesday, October 07, 2008
Saturday, March 29, 2008
Wednesday, January 02, 2008
Wednesday, September 19, 2007
Sunday, July 08, 2007
Monday, June 04, 2007
Friday, May 18, 2007
Sunday, March 04, 2007
Tuesday, January 30, 2007
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.
Saturday, December 23, 2006
Sunday, December 17, 2006
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.
Monday, November 13, 2006
Friday, November 03, 2006
Saturday, October 07, 2006
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.
Friday, August 11, 2006
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).
Friday, July 21, 2006
Sunday, July 09, 2006
Tuesday, June 27, 2006
Thursday, June 15, 2006
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.
Friday, June 02, 2006
Saturday, May 13, 2006
Tuesday, May 02, 2006
- 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.
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.
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.
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.
Wednesday, April 26, 2006
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.
Saturday, April 01, 2006
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.
Thursday, March 16, 2006
Wednesday, March 08, 2006
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.
Thursday, February 23, 2006
Sunday, February 12, 2006
Monday, January 16, 2006
Friday, January 13, 2006
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.
Monday, January 09, 2006
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.
Sunday, January 01, 2006
Wednesday, December 28, 2005
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.
Monday, December 26, 2005
Wednesday, December 21, 2005
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.
Monday, December 19, 2005
Friday, December 16, 2005
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)
Thursday, December 15, 2005
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.
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.
Wednesday, December 14, 2005
Monday, December 12, 2005
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.
Wednesday, December 07, 2005
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.
Friday, December 02, 2005
- 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
Tuesday, November 29, 2005
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.
Tuesday, November 22, 2005
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.
Friday, November 18, 2005
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.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.
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.
I think our mother went through another small bout of depression since we had more results showing that it was pancreatic cancer.
Sunday, November 13, 2005
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.
Wednesday, November 09, 2005
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.