Eli
Forum Replies Created
-
Posts
-
The fact that your dad was “old self”, active and busy doesn’t mean that he couldn’t have tumor growing inside him. CC tumors can grow without any symptoms until they are in advanced stages. My wife is a good example. She was very athletic before she became sick. She followed a tough, daily exercise routine until the very day her CC showed up.
Sorry, I don’t know much about Prednisone. No, my wife never took it.
Hi Derin,
Re: the number of cycles
Several considerations:
1. ABC-02 trial used 8 cycles to treat nonresectable/metastatic cases. I think it’s logical to conclude that adjuvant chemo should do less than 8 cycles.
ABC-02 is British Phase III randomized trial that proved Gem/Cis to be superior than Gem alone
http://www.nejm.org/doi/full/10.1056/NEJMoa09087212. Biliary Tract Cancer Treatment Protocols recommend the same protocol as in ABC-02 trial:
Quote:Systemic therapy for nonresectable or metastatic diseaseSelected stage III-IV (T3-4, Any N, M0-1):
Standard-of-care front-line chemotherapy for patients with good performance status (ECOG score ≤ 2):
Cisplatin 25 mg/m2 on days 1 and 8 plus gemcitabine 1000 mg/m2 on days 1 and 8; then every 21d for up to 24wk or until disease progression
Up to 24wk = Up to 8 cycles. Again, this is for nonresectable or metastatic cases. Adjuvant chemo should probably do less.
3. Before my wife started Gem/Cis chemo, our oncologist said he wanted to do 4-6 cycles. I asked him why not 8? (based on the info above). He explained that they usually do adjuvant chemo for up to 6 months, including 5FU/Xeloda chemo done concurrently with radiation. Marina did 5FU chemo-radiation for 2 months. That left her with 4 months to do Gem/Cis chemo. Enough for up to 6 cycles.
4. As I mentioned in another thread, we were on the fence about continuing adjuvant chemo past the 4th cycle. We met our oncologist last week. We asked him if more cycles is better. He said they don’t have any data to support any particular number of adjuvant cycles. For what it’s worth, we decided to do the 5th cycle. We are scheduled to do CT scan after the 5th cycle. No decision on the 6th cycle at this point. One cycle at a time…
Hope this helps,
EliCancer cells consume sugar (glucose) at a much higher rate than normal cells. PET contrast agent is kind of like glucose. It has similar molecular structure.
When you get an injection of PET contrast agent, cancer cells consume the agent faster than normal cells.
SUV = Standard Uptake Value. It measures the uptake of the contrast agent by the tumors.
High SUV: bad
Low SUV: goodYour SUV went down. This is GOOD! Lower SUV is the reason they wrote “locally positive response to therapy”.
>>> “No other foci of abnormal F-18 uptake.”
They didn’t see any other places where the contrast agent was consumed at abnormally high rate. This is GOOD! That’s why they wrote: “no PET/CT evidence of nodal or distant metastases”.
DISCLAIMER: I’m not a doctor.
Be careful about agaricus. Two reports out of Japan say it’s not safe to take.
An Alternative Medicine, Agaricus blazei, May Have Induced Severe Hepatic Dysfunction in Cancer Patients
http://jjco.oxfordjournals.org/content/36/12/808.full.pdfAlternative medicine safety: agaricus blazei and propolis
http://www.ncbi.nlm.nih.gov/pubmed/21599627Re: Laparoscopic Whipple
A few surgeons do it but it’s new and uncommon (and, I guess, unproven). When I asked our surgeon about it, he said he was too old for it. He also remarked that so many things can go wrong during Whipple, it’s definitely beneficial to have full access.
Re: number of incisions
Marina has one long incision. It goes from the diaphragm down to below her belly button.
Hi Duzalot,
Here you go…
Marina’s Whipple lasted about 6 hours. Marina was in good enough shape after the surgery that she went from OR to PACU (post-anesthesia care unit) to the general floor all on the same day. I didn’t like the fact that our surgeon decided to skip ICU. It was absolutely nerve-wracking to see her in a regular room with all those tubes sticking out of her body.
Marina wasn’t allowed to drink anything the evening after the surgery or the next morning. They gave her small ice cubes to melt in her mouth, to keep mouth and throat moist.
Marina was sitting in a chair on day 2. Not that she really wanted to. It’s an exercise that nurses pushed her to do. Apparently it speeds up the recovery. She was able to take a few small steps from the bed to the chair and back. Later on day 2, they allowed her to drink water. Just a few small sips at a time.
On day 3 she was able to walk from wall to wall in her room. I think she was allowed to drink clear liquids on day 3. Ginger ale or apple juice. Again, small sips at a time.
Day 4, she started walking the halls. Short distances two-three times a day. A nurse or myself had to be by her side, just in case. She increased the number of walks and the distances with each passing day.
They introduced some soft foods once Marina was able to pass gas. Ability to pass gas is the green light signalling that “new and improved” digestive tract is open for business. Every bedside visit by a nurse or a doctor started with a question: Are you passing gas? Never in your life will you see so many people interested in your farting habits. For Marina, the magic moment happened somewhere around day 4.
They started with very soft foods like jello, apple sauce, vegetable broth. They added slightly richer foods a few days later. Ensure drinks, low-fat yougurts, puddings. The general idea is that you have to progress very slowly. From water to clear liquids to richer fluids to soft food to solid food. Eat frequent meals small amount at a time.
Marina was ready to go home on day 7. Unfortunately, she caught a small throat infection. The infection threw off her blood counts. The surgeons couldn’t figure out what was going on, so they delayed the discharge. They discharged us on day 9, which is still amazing.
Our house has three levels and LOTS of stairs. Marina was able to climb the stairs without any assistance right off the bat. We started going for outdoor walks the next day. That would be day 10 after the surgery. By week 3, she was back to walking her regular route around the neighborhood. 1.5 miles or so. She resumed driving on week 4.
Sometime around week 5 or 6, she picked up Yoga (inspired by AntiCancer book). Mostly meditation, nothing strenuous.
Many Whipple patients go home with an Rx for a high doze of pancreatic enzymes (CREON capsules or similar medication). Marina had enough of her pancreas left so she didn’t need that. She followed a very low-fat, vegetarian diet for a few weeks after coming home. Vegetable soups, rice pudding, apple sauce, short noodles, soft crackers, zero-fat yogurt etc. As Lainy mentioned, nothing fried or greasy. Vegetable soup was the main staple food in the first couple of weeks. We blended the soup with a hand-held blender to make it smooth. We added lean chicken soup a few weeks later. Again, we blended it until smooth.
As you can imagine, it’s virtually impossible NOT to lose weight with a diet like this. Marina lost 5-10 pounds before the surgery, and another 5-10 pounds after the surgery. Don’t remember the exact numbers. She didn’t have any unwanted extra pounds to begin with, so she ended up being too thin. We tried adding nutritional drinks like Ensure, Boost, Carnation to keep her weight up. Marina hated the artificial taste so she rejected them all.
Marina started chemo-radiation 10 weeks after the surgery. A tough tough tough thing to do. I can’t say that she was 100% recovered when she started radiation. 80%, maybe.
Any questions – don’t hesitate to ask!!
Wishing you and your step-mom the best,
EliBonus links from my bookmarks to yours
Nutrition after a Whipple Procedure
http://www.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/diet_and_nutrition/After_Whipple_procedure.phpWhipple Procedure – Nutritional Concerns
http://www.virginia.edu/uvaprint/HSC/pdf/16010.pdfHi Duzalot,
I just want to acknowledge that I saw your message. I will be back on the weekend to tell you about our Whipple experience. Feel a bit tired right now… I was up very early today for our ONC appointment.
Best wishes,
EliWe just came back from the ONC appointment. He wasn’t too concerned about Marina’s symptoms. Blood test was fine. We decided to go ahead with the 5th cycle next week. They will reduce chemo doze by 5% to adjust for Marina’s weight loss. Pound for pound, the doze stays the same. 5th cycle brings us to the end of March. We are scheduled to do CT scan early in April. We will reconsider our options after the scan.
Thank you all for the feedback!!
Not just the same cancer. The same RARE cancer. Very hard to believe. This definitely raises the question… what it is that both of them got exposed to???
Duzalot,
My wife’s tumor was in the same place. Common bile duct near the pancreas head. Except hers was both inside and outside pancreas head.
Do you know what kind of surgery your step-mom is scheduled for?
If the tumor is far enough from the pancreas head (higher up in the common bile duct), there is a *small* chance they will resect just the common bile duct. My understanding is this surgery is quite rare, because it’s less likely to secure clear margins.
The most likely scenario, she will be having Whipple surgery. As Lainy said, Whipple is a big surgery. One of the biggest surgeries a patient can have on their body. The surgeon removes the common bile duct, the gallbladder, part of the pancreas head, duodenum (upper part of small intestine) and pylorus (the bottom part of the stomach). Some surgeons do newer kind of Whipple that preserves the pylorus. It’s not necessarily better. After the above-mentioned organs are removed, the surgeon pulls up the small intestine and reconnects it in three places. To pancreas head, to the bile duct stub and to the stomach.
I recommend that you google “Whipple surgery” and read more about it, so you know what to expect. Tons of excellent information on the net. Knowledge is power. Pay special attention to nutrition during recovery. It can be tricky. The surgery rearranges the digestive system in a pretty radical way. Body needs time to get used to the new order of things.
FYI, my wife had Whipple too. I will be glad to answer questions if you have any.
Grover,
Good to see you back, in the full swing of posting. Please take it easy, don’t overdo it!!
Your story is amazing. I hope your recovery stays well on track.
Best wishes,
EliJust want to confirm what Percy and Marion said. I read quite a few medical articles about CC risk factors. They never mentioned trauma of any kind as a possible risk factor.
The established medical consensus seems to be that CC is a slow-growing cancer that develops in the presence of chronic inflammation. Chronic inflammation of the bile ducts can be caused by many different factors. Some known, some unknown. It is quite possible that your father had cancer before he broke his neck.
I don’t think it’s odd that your step-mom doesn’t have an oncologist. My wife followed the same clinical path. Meet the surgeons first. Do the surgery. Wait for the post-surgery pathology report to provide full details about the extent of the tumor. Only then did we get the referral to see medical and radiation oncologists. As mentioned by Kris and Marion, treatment plan depends very much on the surgery outcome.
Note that your surgeon is a specialist in surgical oncology. In that sense, you do have an oncologist. Surgical oncologist, that is.
Susie and Randi:
Thank you so much for your replies. You have been in my wife’s shoes… I appreciate the chance to hear your thoughts. You both expressed the same sentiment, that you wanted to complete the recommended cycles to have no regrets if cancer comes back. Marina had the exact same attitude when she started chemo. She lost her resolve a little bit by the end of the 4th cycle. She’s been feeling better the last couple of days. I think she is coming around to the idea of continuing chemo.
Susie: yes, lots of similarities between your and my wife’s treatments. One difference, if I remember correctly: your chemo was split wasn’t it? 3 cycles before radiation, 3 cycles after?
Randi: your case is kind of similar too. Whipple followed by chemo. You mentioned you had 6 cycles of Gemzar. Was it Gemzar alone or with another agent?
