MEK/Pazopanib
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Regina,
I see Dr. Maeve Lowery. She is in Dr. O’Reilly’s group. I am very happy with her. She is attentive and open to all conversations, gives me the time I need to discuss everything and anything on my mind. She is also up on all the trials and and happily discusses them with me. She’s always thinking of next steps and keeps me informed.
I was aware of having to be off current treatment for four weeks before starting the clinical trial. Most trials require that but Dr. Lowery didn’t see that as a big issue for the Sloan Phase I trials or the General Mass trial. My main issue, for the General Mass trial, is that I’ve been on more that two chemo regimens, but as I said she said we may be able to work around that.
My insurance would probably pay for the clinical trial because I would go into it because current treatment stopped working. But Dr. Lowery said they may not pay for the biopsy for the next generation gene sequence. If I get that done, we’ll check with them first to see what they say and then go from there. I’m not going to let an insurance company decide my fate. So if it’s something my doctor thinks strongly I should do, I will work something out with or without the insurance company.
I agree with you, it is good to discuss these things with your doctor and be on their radar. We have to be our own advocate and that is why this website is so important. I have gathered so much info thanks to the moderators and all the people, like you, that kindly share there stories here. I want to pay it forward and also share my treatment plans and possible options in hope of helping others.
Stay strong Regina and I will pray and send positive vibes your way for this trial to work for you. Thanks again for sharing your story.
Peace, Love & Hope.
Dear Mary~
As I shared in another section, I was actually referred to the cabo trial by my excellent Mass Genl doc, Eunice Kwak; however, when I looked it up I saw that it had been approved for several other cancers; so I called my insurance company and they said they would cover it! So you can do it off trial. My Columbia Pres doc, Abby Siegel, (also wonderful) said she’d be glad to put me on it if I wanted. We agreed to save that one for when I may not be eligible for a trial.
I also see a superb doc at Sloane, Eileen O’Reilly, who suggested that I consider the Taxanes at some point. I’m really glad to hear that Paclitaxel is keeping the tumors stable. Who do you see at Sloan?
I’m pretty sure the DTP (Phase I department) at Sloan requires that you be off other treatments for four weeks before they’ll even meet with you. I met with Dr. Drobin, whom I really liked, there before starting this trial and he said that there would be some trials opening up soon. It’s all a matter of timing with Phase 1 trials. It’s good to be on their radar. In fact, I am glad to be on the radar of five excellent docs are great medical centers, as they update me regular if there’s an opening.
I was also offered a go at a trial at Mass General with Dr. Kenneth Tanabe, an extremely well-respected and kind doc, in immunotherapy, using the Herpes virus to attach to ones own immune cells and reinject into the liver. Though I find this type of therapy very promising, it not been tried extensively as MEK and Pazo had. I might head back that way later.
There is a lot that can be done; just reach out with many feelers. BTW, I’m not sure at all yet that this regimen is working for me, but I will keep you posted, especially after CTs, etc. in November.
Peace and hope,
ReginaRegina, I used to be more blingy, now more subdued and my Robin (51) has become the Queen of Bling! I get a kick out of all the girls wanting vintage now. Teddy’s Granddaughter is getting married next June and it will be a total vintage wedding. This next weekend I will be in Palm Springs for an engagement party her Mom is giving. I am giving Dani 2 gorgeous pair of vintage earrings hoping she wears 1 pair for her Wedding. On and Teddy’s daughter gave me the job of watching for Teddy to see if he comes. I have already been told I get the Great Grandson for 2 days, he is 22 months and a mini Teddy! It is unbelievable! Makes me believe in reincarnation too! Anyway I am going to hate those 2 jobs. Yeah right!!!
Lainy~ My daughter’s taste has always been sophisticated to my Bohemian look, but guess what? The tastes are shifting to Bohemian and she’s borrowing my clothes now! And I shop in her stores — the sale rack in Free People granted me three nice tops last week during my “retail therapy” session that immediately followed an important workshop during I was embarrassingly chemo “brain-limp!”
Hi Regina,
That is good news!!! I hope the Clindomycin helps with the acne and the Immodium with diarrhea. I also hope you get moved to Hopkins since it is so much closer to home for you.
I’m not eligible for a lot of trials because of previous chemos I’ve had. But I talked to my doctor today about a trial at General Mass that looks good for me. I’m currently being treated at Memorial Sloan Kettering and am being treated with Paclitaxel. It is keeping the tumors stable as of last CT scan on 9/4 which is good news but also means I can’t go on a clinical trial because of that. My next scan will be the first week in December and if there is any tumor growth or new tumors, I would be eligible for a clinical trial. Sloan has a number of trials in Phase I right now with inhibitors that I could be eligible for. My doctor said I could also be eligible for the Phase II trial at General Mass – Cabozantinib. One problem for me might be that I’ve had more than two different chemo regimens. The study says for patients with progression on first or second line systemic therapy. But my doctor said there may be ways to work around that. She would be willing to call the doctor in charge of this trial at General Mass to see if I could be eligible if my December CT scan shows tumor growth or new tumors.
Please continue to update us on your progress. It’s so nice to hear from you and Kris (also doing well on a clinical trial) on your great progress with your clinical trials. It gives me hope for the future with this horrible disease.
Thank you for sharing.
Peace & Love,
MaryI posted in the other section, but let me repeat… Great news to hear! I hope you get to transfer back to NY soon. We can start an “acne” club!! lol
Please keep us updated on the trial as so many of us follow these posts! Any new trials are of a lot of interest to me!Ha, Ha Regina, I could probably get one leg in one of those skirts! Sure different than the “poodle” skirts I wore in the 50’s. But then so is everything different. I remember my parents objecting to Elvis. I still don’t think he left the building!
Thanks, Lainy~ You are always so supportive! Yes, in fact, I’m buying clothes in stores my teenage daughter frequents to go with it. @@/
Hi Regina, all in all I would say its looking good, looking good! Hope you get that transfer back to your area. As for the Acne just tell people you are really 16! Please keep us posted, I know you will and keep up the reports on your progress. I think you deserve a big YIPPEE!
Trial 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,
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.
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