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.