jscott
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Hi Lisa,
You can still contribute to the hepatobiliary registry. That registry is much broader than just younger colangio patients.
The CITY project plans on looking on the subset of people in the registry that are <50, but with a big enough registry, I hope many other research projects get off the ground.
Jason
Hi Kris,
Andrea finished her last IMRT treatment about 2 weeks ago. Her nausea symptoms sound similar to Mark’s. After the first couple of weeks, she had an upset stomach that prevented her from eating or drinking much. She actually threw up most days. She said it was a weird form of upset stomach in that food sounded good to her, but she still could not hold anything down. Also, even a swallow or two of water was about all she could handle. She would feel “full” and would have to fight throwing up just to hold down a couple of swallows.
The only thing that helped during treatment was to go to a totally bland diet. She had broth, mint tea, popsicles, jello and a little bit of toast. That at least let her keep a small bit down. She lost about 20 pounds, and it wasn’t until about 1 week after treatment ended that she started to feel a little better.
During the first week after treatment, they did give her a steroid. That made an amazing difference with what she could eat and how she felt. I didn’t understand it fully, but for some reason they did not want her to keep going with the steroid unless she absolutely needed it. She took it for 3 days and then stopped. I think she should have kept it up for at least 7 days.
Anyway, maybe a bland diet with popsicles for hydration will help Mark as well. I am not sure if a steroid is allowed during treatment, but if it is, I would consider that. It made the most difference.
I hope Mark feels better soon,
Jason
I wonder if there will ever be a clinical trial where half the people simply continue to do whatever their oncologist says, and the other half follow the advice of “Dr. Watson.”
I bet it is coming, but that would be surreal…
Jason
Hi Heather,
My wife is finishing up her last 3 IMRT (out of 28) treatments this week. Her main symptoms were fatigue and nausea. The nausea was the worst however. After the first week, she became unable to keep anything down. She took meds and ate small meals, but it did not help much.
The only thing that ended up helping was to change to a completely bland and mostly liquid diet: broth, popsicles, jello, crackers, and bagels. She also had to alternate liquids and solids since combining them seemed to make things worse. She has not been able to eat much, but it is at least staying down. She has lost about 12 pounds over the last 3 weeks, but hopefully that is slowing down.
Anyway, I wanted you to know that Andrea has easily spent more time in bed than out, and that she is experiencing terrible nausea. To my knowledge, she has not had any low grade fever. I don’t think fatigue and nausea are at all uncommon with IMRT.
Best of luck to you and Gordon,
Jason
Hi Rose,
Fatigue, nausea and anorexia are listed as common side effects of capecitabine (Xeloda), but infections don’t seem to be commonly reported.
Table 4 of this paper reports the incidence of various side effects.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3879291/#!po=42.5000
My understanding is a 20%-25% dose reduction of xeloda can reduce symptoms. Your oncologist will know best about that though.
Hopefully you can figure out what is going on,
Jason
I can’t get access to the article, but it looks like it is discussing (summarizing?) this research:
http://www.ncbi.nlm.nih.gov/pubmed/24485665
Jason
Catherine,
Here is a thread on some SIRT research that I found interesting. You might also be interested.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=10537
When I was looking into this for my wife, the main thing I was concerned with was whether the SIRT treatment was “whole” liver of “partial” liver. To treat the whole liver, some institutions will do it all in one procedure, and others will do it over two procedures.
I personally think the research indicates that using two procedures is safer, but I am not a doctor, and I know that opinions amongst interventional radiologists vary.
Hopefully this is helpful to you.
Best wishes for your mom,
Jason
So much great news on clinical trials…Maybe this is what progress feels like!!
Kris, I am so glad you are doing so well. I remember asking about multi-year survivors w/o surgery. When I heard your story, I thought it was very inspirational. Keep on keeping on!
I’ll add this info to the wiki tomorrow.
congrats,
Jason
Hey Marion / Melinda,
Here is the timeline I put together for the wiki (leaving out the Jan. 2014 info in this thread):
August 2012
It has been a very long time since I have posted to this site. I was diagnosed with Intrahepatic CC on 12-1-99. I had a 2/3rds liver resection only to find mets to my lungs 3 months post surgery. I have done chemo for past 2 yrs. Started with Gem/Cis combo which was very toxic to me, tried Gem alone with no success and then did Avastin until the toxicity build up again. I have numerous mets to my lungs and about 6 or so 3-6cm tumors on my liver again.I have always kept my eyes open for clinical trials but found it very hard to get excited over more chemo. I believe that my discovering this trial at National Institue of Health was meant to be. It is called the GI-TIL trial. It is a tumor infiltrating lymphocyte immunotherapy trial. They have been using it successfully for melanoma for quite some time and have just recently opened it up for GI cancers. I am the 9th person to try it, but the first with CC. The first 8 people were unsuccessful.
I met with the research team in March and was accepted into this trial. There is certain criteria and I can’t remember all of it, but you had to have been off chemo for a month and are showing signs of progression. The information is online and you can call a nurse specialist to get all the details.
My husband and I returned to Bethesda, MD about 2 weeks later and I had 4 tumors from my left lung removed. The docs then take the lymphocytes from these tumors and grow them in a lab for about 30 days. We then returned again for a 3 week hospital stay. The first week they give you 2 chemo drugs, not to treat the cancer but to suppress your immune system. The first drug was rough and the second was not as bad. The second week they infused 42.6 billion of my lymphocytes they had grown back into me!! They also give you a drug called IL2 at the same time for up to 15 doses or as many as you can handle. I only made it to 4 doses. The 3rd week was recovering my blood counts enough to go home.
I just had my 3rd monthly checkup and I have had a total of 23% overall shrinkage since this treatment. They consider 30% successful, so I am hoping to hit that mark next month! This is a one time treatment, and all I know is everyday that I don’t have to do chemo is a GREAT day!
I have been leary to share with you all in case it didn’t work, but then I thought it was worth sharing and let you all check into it as you seem fit.
I am almost 44 yrs old, married and have 6 children. It was worth it for me to try this treatment. The 3 weeks in the hospital was hard, but about a week or so after I got home, I started to feel better than I had in years. A chronic cough I had disappeared, my energy level increased drastically and overall just better.We live in Montana and the good thing about this trial is that it is a Federally funded trial so they paid for all the medical costs plus my travel airfare and give you $50/day towards expenses, which doesn’t cover much in that area, but was better than nothing. I also have a brother that lives 30 miles from the hospital so it all worked out well for us.
I just thought you should all know about it…..God Bless!!
Melinda BachiniSept 2012:
I just returned home from my 4th checkup since my initial treatment in April on the GI-TIL trial at National Institute of Health. I have officially reached the partial response rate of 30.06% and am now considered a success and the first one to be successful!!!! I seem to be averaging about a 7% shrinkage rate on my tumors each month without any treatment other than the initial treatment in April. I feel amazing and am so happy this has been working! I just wanted to update with the news! God Bless…MelindaDec 2012
I just returned from National Institute of Health where I am doing the TIL trial. My check up was great!! No new growth and some small shrinkage overall in my lungs and liver. The docs and scientists are excited with my results, not as much as I am though!! It has been 7 months since I have completed the treatment. I have had no further treatments or chemo of any kind and am still going in the right direction. I hope and pray that my healing continues and that the scientists can find a cure for all of us!!!! Working hard to do my part and thinking of all of you daily!!! MelindaFeb 2013
I returned last week from NIH with stable results. No change from scans done two months ago. I am happy with stable! I am even more happy that stable came without chemo!! They say as long as there is not growth – the cells are still doing their job. I go back in March for next checkup and will keep everyone posted.I have really enjoyed talking with so many of you over the past few months, it has been great to put voices to names. It helps to share our stories, and I want to be able to help answer any questions that I can. My prayers are with each and everyone of you…stay strong, keep the faith and God Bless you!!
Lots of Love,
MelindaApril 2013
Hi all,
I just returned from my latest checkup out at NIH. It has been one year now since I have received this TIL treatment. Scans this month still showed no growth. Stable it is……since November. While I would sure love to hear the word shrinkage again….I am still feeling that this has been successful for me. Considering that I have not had any chemo or radiation or any treatment what so ever in the last year, I feel like I have to celebrate these results!I feel extremely blessed to have had such an amazing year with my family. While the 3 week hospital stay for treatment was not fun, I would do it again in a heartbeat to get another year like this one! I don’t know what my future holds anymore than anyone else but for now I am happy with stable – I can definitely LIVE with stable!!!!!
God Bless you all!!!
MelindaMay 2013
Hi all,
I just returned from NIH this week. My scans showed minimal growth, like in 1-2 mm in only a couple of tumors in my lungs. Considering I have several tumors in both lungs and I think 4-6 in my liver…that have not grown, I am still happy with this news. We are just watching for now, I go back in the middle of August for next checkup. They have a formula for everything and won’t consider it progression of disease until a certain percentage of growth. At that time I could possibly repeat the treatment, depending on the consensus of the doctors, or look for a different trial.I am still happy with the trial results for me, I only wish that it would work for someone else as well. There is still so much of the unknown. I know for me, not having to do chemo, gave me great quality of life this past year and amazing time with my family. I still don’t know what the future holds but I remain optimistic and hold on to my faith. Always thinking of you all, my fellow cc fighters….God Bless…..Melinda
Jason
Hi Caroline,
I am starting to compile a list of clinical trials who have Cholangiocarcinoma patients participating in them.
This is only the third one I added, but it is a start
Check it out here:
http://cholangiocarcinoma.wikia.com/wiki/Clinical_Trials
If you click on the Cabozantinib trial link, you can see the information I included from a quick forum/web search. I couldn’t find any other first hand patient information, but I did find some research papers on the drug.
If you are aware of other research, or want me to update your mom’s experience reported on the wiki, please let me know. (You can even edit the wikipage yourself if you are feeling up to it…it’s easy!)
I am trying to make a webpage where CC patients can go and get a consolidated look at various trials that may be of interest, as well as see how actual patients are getting on. Eventually, I am hoping to move the wiki page to these forums, but when and if that will happen has not been decided.
In any event, thank you very much for letting us know how this trial is going. I am sure it will be very helpful to future patients considering this drug / trial.
Jason
Wow Melinda,
Your treatment sounds very tough but also seems to be really helping keep the cancer at bay. That is awesome!
I went back and searched the forums to get your previous updates. I collected them into a timeline on a wikipage. I also added this latest update.
If anyone is interested in the older updates, they are here:
http://cholangiocarcinoma.wikia.com/wiki/NCT01174121
Thank you so much for communicating your clinical trial experience! Any information is so helpful to other patients.
I hope you continue to do so well, and please keep us up to date.
Thanks!
Jason
Michele,
I can’t really give you advice on what to do. All I can say is I hear my own feelings echoing so many things that you have said. My wife is unresectable, we have two boys and I can’t imagine life without her. Even though I can’t provide advice, I can say you are not alone.
I am hoping for the best,
Jason
Regarding diet and lifestyle changes —
Well, this is just my opinion, but here goes…
I think it is incredibly easy to be fooled by randomness. A good illustration from finance is the “stock picking newsletter” scam.
That scam goes like this.
Pick 1000 people and send them a “free stock pick of the month.” The scam part involves sending each one of the 1000 people a DIFFERENT stock pick.
For illustration, assume half the stocks go up after 1 month and half go down. At this point, there are 500 people that got a “winning” stock pick from me the first month. Take that group of 500 and send them another “free stock pick of the month.” Again, send all 500 a different stock pick. After another month goes by, do the same thing to the 250 that have now got two “winning” picks in a row.
Now, after 3 months, there will on average be 125 people that have, for three straight months(!), gotten a stock pick that has turned out to be a good pick. To this 125 people you send them a special offer to subscribe to your newsletter for the introductory price of $10,000 or some such nonsense.
Anyway, the idea is that the people receiving the stock picks only see the picks made for them (not the picks made to other people). By shear random chance, a good fraction of them will see a sequence of good picks and will be inclined to buy the newsletter. That is the stock picking newsletter scam.
In medicine, the same issue arrises. It is not at all a scam, but rather the issue is that each patient mostly only sees what is happening to them. For example, suppose 10 cancer patients add a “no sugar” rule to their diet. Perhaps one of those 10 has a very good response to treatment. It would be very natural for that patient to attribute some of the good response to the “no sugar” regime.
Similarly, 10 patients might decide to add lots of exercise (or olive oil, or anything really), and again perhaps 1 has a strong positive response. This person is likely to suspect that exercise played a role in their response.
Now it could just be that one in 10 patients have a strong response by shear chance alone (even if they don’t make any major lifestyle changes).
How to combat randomness? In my opinion, the best way we have to guard against getting fooled by randomness is the clinical trial.
While it could be that certain diet changes have an effect on cancer outcomes, it may not. Just as the people receiving the newsletters could be fooled by randomness, so can cancer patients.
For me, the take away is to try and be healthy, but don’t do things that seriously negatively impact quality of life unless there is good supportive evidence.
I also believe that participating in a clinical trial plays an incredibly important part in trying to improve patient treatments. Without clinical trials, randomness can slow down treatment innovation to a crawl.
Again just my take on things.
Jason
Thanks Lainy. It was fun meeting “the gang” All really nice / great people!
Cathy – I am sure Dr. Gores was talking about ICC. Mayo seems to be a big advocate for transplant of the other cholangiocarcinomas. If I remember right, he reported 5 year survival rates for ICC transplants at 40-50%. He did say “relatively” low survival rates. I took it to mean survival rates for other potential transplant patients was substantially higher.
Jason
