regina
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Hi Kris~ I just saw your response. I would love to read your email, but I don’t believe it arrived. Thank you!! kyraserena@aol.com
Thanks, Lainy~ Yes, I am truly skeptical, but though it is so rare, I leave an open mind to treaments taht have not yet been approved. I have EXACTLY the same question you do, and the alternative docs always say the same: it’s because Big PHarma doesn’t stand to make money from it. But Psorinum had several published studies showing remarkable reults that impressed even my onc at Columbia Presbyterian.
Has anyone tried? Has anyone followed Raymond CHang’s protocols? Has anyone tried dendritic cell vaccines. I can’t seem to find these on this forum, perhaps because I am still not adept at using it.
Thanks much.
BTW, I will likely to be going to MD Anderson to get started on a MEK/Pazopanib trial next week that will be continued at Johns Hopkins. Any suggestions as to other docs I should try to see down there while I’m at it? I”m scheduled to see Drs. Zinner and Shroff.
Thanks!
My understanding about transplant, and this from my very well-informed docs at Columbia Presbyterian in NYC, is that when the immunosuppressant drugs are given to avoid organ rejection, all the micrometastases that have been kept in check by one’s immune system suddenly flourish and one winds up with tumors throughout the body. Also, we don’t fit the criteria for a transplant organ — one would have to get a live donor, which can be done.
If anyone has differing information, I would love to know. I have intrahepatic cholangio that recurred three years after resection. I’ve had six months of Gem/Ox and two of FOLFIRI, and now await clinical trial openings or better ideas. We’re not sure if spots in my lungs are mets, as they’ve been stable.Best to you all!
Hi RVB~
I did have my tumor cells genetically tested by Foundation Medicine. Of 236 gene mutations tested, they only found IDH2 to be positive, often the case in cholangio. The criticism of this test is that even when mutations are found, the targeted agents have not yet been discovered most of the time. There are some studies pertaining to IDH2 that may lead to pertinent drugs in the nearish future, however.
BTW, I completed four rounds of FOLFIRI after seven months of Gem/Oxi, following a recurrence, and the most recent treatment was pretty tough. I had some stomach-back cramping and low grade fevers, but not much trouble with diarrhea. Scans show that the lesions have grown, so a new plan will be discussed tomw, which may include MEK inhibitor trials or Tarceva-Avastin, or who knows what else.
Best of luck,
ReginaHi Holly~ Fancy meeting you here! Did you find any more information as to people’s experiences with this combo? FOLFIRI seems not to be working for me, so we have to come up with a new plan. A MEK trial is one option, Tarceva/Avastin another. I don’t know what else. Our doc chuckles because we seem to be presenting her with the same questions about other agents. Maybe we can discuss.
I hope you are doing well.
Regina (Serena)Hi LDittmar~
This is, indeed, very exciting. I am pretty sure that immunotherapy will be the way of the future. I am still on 2nd line chemo (FOLFIRI), but I’m seriously researching the dendritic cell vaccine and viruses. Did they need to use cryopreserved tumor samples? Some docs do it only with fresh tumor, while others use another method.
I’ve been in contact with Dr. Gustavo Moviglia in Buenos Aires, who has been doing similar work, but without the virus. He met with me in person in NYC — quite an impressive and kind man. I am considering his treatment, but prefer to learn more before heading to So America. I also prefer to find docs in the US.
Raymond Chang was also recommended to me, but I wanted to get some patient reviews before spending $875 for a one-hour consult.
I will be following your posts. I wish you (and all of us) the best of luck!
ReginaThis is a wonderful reportage. If anyone is willing to summarize these reports as they read and understand them, I will be very grateful. If I get trough some of them, I will be sure to provide a synopsis.
The CA19-9 study is interesting to me since I have always had very low levels. None of the cancer marker have every shown up on me. I have ICCA, first diagnosed as a single small tumor in 2009. It was resected and I was treated with 6 months of gemcitabine. A routine scan picked up multiple small lesions all over my liver Novemeber 2012, but nowhere else (fingers crossed). My CA19-9 levels were always normal. I have been on gen and oxali for six months with stable tumors and the levels are only mildly elevated beyond normal. We haven’t been sure what to make of this, and I always wonder if this is information that would better classify the cancer.
Be well!
ReginaI’m sorry. I’m still learning how to use this site.
marions~ Thanks you for your help. How do I find Kris? Do you know how the trials are going? I”m not sure how to find the threads, other than the original Melinda post. I pray she is doing well. Her post says she was first diagnosed in 1999 — that’s promising!Much thanks,
Serena
