regina
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FYI, I queried my insurance company (Oxford) about cabozantinib, which is approved for other cancers, and they approved for me (intrahepatic cholangiocarcinoma after two standard treatments were exhausted). I’m not using it now because I was accepted for a MEK/Pazozantinib trial and figured I would save the cabo for later when there might not be a trial option; but one might want to try that rather than to be tied to a clinical trial setting.
Best,
ReginaTrial update:
After a false attempt at J Hopkins due to an inadvertently departing clinical team member, I was accepted for the same trial at MDAnderson. I think they may be transferring me back up to Hopkins on my request, since I live in NYC.
I have been on the trial for 18 days now. Side effects, as expected, have been sleepiness, an acne rash (not too attractive), and diarrhea. Caffeine, topical Clindamycin and Immodium have been my friends. I may have to start the oral antibiotic for the acne, as it probably won’t let up as long as I’m on these meds.
Meanwhile, my blood work looks really good, including most liver enzymes (ALT, Alk Phos)(AST went up a bit), except platelets, which have surprisingly gone down to 68 (this is not quite expected). AND, CA19-9 has gone down to 83 from 109!! I’m not sure how that’s possible in two weeks, so I’m not putting too much stock in its significance.
This seems to be a very promising regimen, according to results seen in the (small number) of cholangio patients treated.
If anyone wants to discuss, please contact me.
Cheers,
ReginaTrial update:
After a false attempt at J Hopkins due to an inadvertently departing clinical team member, I was accepted for the same trial at MDAnderson. I think they may be transferring me back up to Hopkins on my request, since I live in NYC.
I have been on the trial for 18 days now. Side effects, as expected, have been sleepiness, an acne rash (not too attractive), and diarrhea. Caffeine, topical Clindamycin and Immodium have been my friends. I may have to start the oral antibiotic for the acne, as it probably won’t let up as long as I’m on these meds.
Meanwhile, my blood work looks really good, including most liver enzymes (ALT, Alk Phos)(AST went up a bit), except platelets, which have surprisingly gone down to 68 (this is not quite expected). AND, CA19-9 has gone down to 83 from 109!! I’m not sure how that’s possible in two weeks, so I’m not putting too much stock in its significance.
This seems to be a very promising regimen, according to results seen in the (small number) of cholangio patients treated.
If anyone wants to discuss, please contact me.
Cheers,
ReginaThanks, Marion!
So far, my days have varied widely. On some days I have had diarrhea, which was controlled by one immodium but left me feeling useless the rest of the day. Trying to hydrate. Yesterday, I felt very good and went body surfing in the ocean, got some work done, did a vigorous bike ride, made dinner for friends and did some painting. Today, I feel lousy and tired with diarrhea again. Too bad, because I had all sorts of plans to get errands done and take my mother for a bike ride and participate in a wonderful workshop. Let’s hope I feel better later. I know these vacillations are part of the game, here. What’s tough is to plan without knowing how one is going to feel.Meanwhile, the expected acne rash has erupted on my face, causing me to look Not My Best, especially with the weird short hair regrowth I sport on my head! Must tune up my wigs and get better Cover-up.
Thanks for all your cheerful support. I hope you are doing well.
ReginaThanks, Marion!
So far, my days have varied widely. On some days I have had diarrhea, which was controlled by one immodium but left me feeling useless the rest of the day. Trying to hydrate. Yesterday, I felt very good and went body surfing in the ocean, got some work done, did a vigorous bike ride, made dinner for friends and did some painting. Today, I feel lousy and tired with diarrhea again. Too bad, because I had all sorts of plans to get errands done and take my mother for a bike ride and participate in a wonderful workshop. Let’s hope I feel better later. I know these vacillations are part of the game, here. What’s tough is to plan without knowing how one is going to feel.Meanwhile, the expected acne rash has erupted on my face, causing me to look Not My Best, especially with the weird short hair regrowth I sport on my head! Must tune up my wigs and get better Cover-up.
Thanks for all your cheerful support. I hope you are doing well.
ReginaYes, Marion, they are certainly complicated, by necessity. The trip was an adventure, anyway, and we slipped in a fun trip to Austin in between appointments. I’m going to see if I can be transferred to Hopkins, eventually.
Thanks!
be well,
ReginaFrom all I’ve researched, along wit my family, it appears that immunotherapy will be the way (or one of the ways) of the future fight on cancer. There were very many tempting trials and immunological treatments — I’ve delved into the work of immunotherapy centers in all parts of the world — but I chose to go the way of a MEK trial for now. I’d be very interested to hear how this goes. Much luck to you and your mom!!
ReginaWe certainly do forge ahead on this path as intrepid travelers. After a couple of chemo protocols to treat a recurrence three years post resection, and having weighed many options and consulted with five docs, I have enrolled in the MEK/Pazopanib trial that Holly mentioned. I first went to Hopkins to see Dr. Azad, but they lost an important staff person to an unforeseen leave and have not been able to enroll anyone so far. She referred me to Drs. Shroff and Zinner at MDAnderson in Houston and we made the schlep there a week ago. The medical center is impressive; the city oppressive.
Despite some initial trepidations about timing, they were able to get all the testing done within those five days and start me on the trial as of Tuesday 9/23. So far, so good. Some fatigue is hitting, along with hypersensitive skin on my face.
Both meds have been FDA approved individually for other cancers, but not in combination. The Phase I part of the trial included all solid tumors and has been going on for two years with good success. It was due to the surprisingly good response of two cholangio patients that the researchers won a grant to add 25 cholangio patients to the trial. I think it is not officially Phase II, but the dose has been established and side effects logged for two years.
I’d love to know if anyone else on here is enrolled. I’d be glad to chat with anyone considering it.
I have been wondering if there are any individual patient advocates that help patients one-on-one to navigate the system and parse through the clinical trials and scattered information specifically pertinent to the patient’s medical needs. I would love to find such a person right now as I am no therapy at all with active disease and find myself flailing about in the miasma of clinical trial bureaucracy, while losing precious time.
Please advise if I should post this elsewhere, as well,
Much thanks,
ReginaHi Lainy~ Yup. OK, I”ll say it: It sounds a bit hoaky to me. Often when investigating an alternative doc or center I listen, fascinated and hopeful, for a long time until I hear something I find questionable or false. Then I wonder whether this discredits all the rest of what they do, or at least, their credibility.
Well, I might not have minded a reason to visit Scottsdale and am quite grateful for your offer!
Thanks and best to you,
ReginaThanks, PCL. I called them and they explained that I would have to go to Scottsdale to receive their recommendations. I guess it’s best to just read the articles for now, as I am running around the states like a nut trying to get into clinical trials.
They believe in attacking the underlying causes of cancer; this treat most cancers the same way. They actually administer chemo there alongside high dose IV Vitamin C (which makes me wonder because it’s supposed to negate the effects of platins, I believe) and IV curcumin.
There is just so much to look into and no one really seems to know what works.
Best to you nad thanks for your great help.
ReginaThis is indeed very interesting. I am giving them a call. Has anyone determined if these articles are verified and if the advice is credible? It certainly looks great.
Thanks!
ReginaThis is a fantastic list! How, exactly do they participate in this organization? It’s tempting to put out a mass email to them and see if someone offers a bid!
HI Jules, Lainy, et al~ There are several papers written by Chatterjees who conducted trials in India with a trust funded by another Chatterjee. They look like legitimate trials, but I find it very surprising that, given their surprising results, there haven’t been other studies to replicate this. My onc was impresses when we read these, but knows nothing about it. It falls somewhere between innoculation (by the pus of the scabies virus) and homeopathy, as the concentration recommended: 6x (not 6c) allows for enough molecules of the substance to have an effect that could be rationalized by Western Medicine.
I, too, believe in a multi-faceted approach, but it’s very difficult to sort out the quackery.
If anyone finds any further info, I would be very interested.
Best to you,
ReginaHI Jules~ There are several papers written by Chatterjees who conducted trials in India with a trust funded by another Chatterjee. They look like legitimate trials, but I find it very surprising that, given their surprising results, there haven’t been other studies to replicate this.
I, too, believe in a multi-faceted approach, but it’s very difficult to sort out the quackery.
If anyone finds any further info, I would be very interested.
Best to you,
Regina
