Doctor suggested adding Avastin to the current TMZ dose and schedule of 5/23, or doing Avastin with CCNU, or going to Dana Farber in Boston for clinical trials. We feel a little lost! My husband read a while back that Avastin had a lot of bad side effects, so he is affraid of that (quality of life and at the end not work either), and he is affraid that once he start avastin he is not longer qualified for a lot of clinical trials. So Doctor suggested to try a clinical trial first and then go to avastin if it doesnt work.
What are your opinions? I don't know much about clinical trials and don't even know what questions I should be asking. Do you guys have any suggestions on that and questions I need to ask?
How many of you are taking Avastin? How well are you tolerating it? Can Avastin put cancer into remission? What other drugs should we use with avastin to synergize its effect on cancer?
Do you recommend clinical trials or just going with avastin and other off label meds?
I really appreciate if you give me some info or advice! Thank you very much for your time!
Pasting the comment here too:
ReplyDelete"Hi Daninha, from the experience of my wife with Avastin, I only can tell you that it will improve his quality of life. Talking about the side effects, my wife feels tired in the infusion day and 2 days after, but then she recovers quickly, no vomiting, no hair loss"
Is true that Avastin will exclude from Clinical Trials, I'd leave it for a last chance after enroll in Clinical in case it didnt work. We have no options in Argentina, so we had to go with Avastin + Metronomic TMZ. Now we are making arrangements to travel to Duderstadt to get treatment in the Dr Nesselhut Clinic.
She is also in off-label meds and supplements.
Hi Francisco, thank you for your information. It makes us feel better knowing that other people are tolerating it well. I would love to get some info about going to that clinic or the supplements and meds your wife is taking, if you don't mind. My only concern is waiting too long for the clinical trial because of the rate the tumor is growing. Has your wife's tumor shrunk with the treatment? Here is my e-mail if you have the time, I would love to get some more info. daninha21@msn.com
DeleteDoctors at a center like Dana Farber should be able to guide you on the subject of clinical trials. For example, Dr. Eric Wong has been very patient centered in conversations I have had with him. There is work going on with immunotherapy, both vaccines designed to kill tumor cells and drugs that are designed to shut down the mechanisms tumor cells evolve to avoid the body's normal immune system. I hope there is something out there for you!
ReplyDeleteOur doctor's office here will set an apto for hopefully next week. The other major problem is that I heard they are restricted with any off label meds or supplements during the clinical trial. Have you heard that?
DeleteMy 13 year old daughter is at Dana Farber and was on a clinical trial (AdV-tk). Yesterday's MRI (9 months post-diagnosis) showed growth -- actually more like infiltration where the tumor is filling up any empty space between the folds of the brain. It is inoperable since it is not a solid mass. We will regroup and talk about next steps next week -- options on the table include St. Jude's and Memorial Sloan Kettering's clinical trials.
ReplyDeleteAll that to say, I am looking into IV Vitamin C (IVAA) therapy and taking my daughter to a place in NH tomorrow. This option seems like a no-brainer to me when I read about different cases saying that those treated with IVAA saw a change in the texture of the tumor where it became encapsulated...which is what we need in order to remove this tumor and all it's tentacles.
We live in NH, where is this place for the IVAA? Do you need a referral for that? I'll keep you all in my prayers. Battling this cancer is like being played by a really mean mind game. I'm so frustrated and disappointed.
DeleteOh, she was on Avastin and Temozolomide and didn't have any negative side-effects from the Avastin.
ReplyDeleteI would suggest looking for a good clinical trial before starting on Avastin.
ReplyDeletehttp://astrocytomaoptions.com/currently-recruiting-trials-glioblastoma/
http://astrocytomaoptions.com/currently-recruiting-trials-high-grade-glioma/
First question: is the new tumor area surgically resectable?
Do you have a copy of the pathology report? Does it say "IDH1 R132H" positive or negative?
ReplyDeletethe tumor is inoperable because he already had resection on his left frontal lobe, now tumor reoccurrence is on the right. They never did any mutation testing before, and now there was a problem with the frozen sample and IDH1 couldn't be done!? I asked about R132H but they never gave me an answer. I'm hoping that at Dana Farber they will be able better with his care. Stephen could you give me a list of helpful questions I can bring to Dana Farber? Things that are important to know!? My e-mail is daninha21@msn.com
DeleteWe were at Dana Farber in the way beginning w my sis. Dr Reardon. They do genetic testing. It was for a trial I think and free. I have the paper work. Please keep us posted on what they offer therapy wise. They were very open to supplements but that was during SOC; much more then Duke is. During trials I believe whole different case though. Dr Patrick Wen is great there, too. And they have some decent trials. Just didn't feel they were "on top" of her care like we wanted. Had local NO doing things and Dana Farber every Cple mths but we wanted Farber (dr Reardon)to be the lead and was too much confusion and back and forth over who was making the decisions between local and them w the experience, stuff being missed, not done right etc. Hope it's not a decision she regrets. We still will consider them for trials if none at Duke pan out though (if have recurrence). Good luck and I hope u get better care then u were. U will b in my thoughts.
ReplyDeleteD.F. Informed us that there is no spots for clinical trials. We finally got an appointments with Sloan Kettering and Cancer Centers of America. I'm excited about these two appointments but also nervous that my husband is going at least a month without chemo. I know that where we are right now, just doesnt feel like a patient centered care but a one size fits all. We need to find a center that cares about each individual pt and where we are not just a number.
DeleteI apologize for not getting back to you before your Dana Farber appointment D.
ReplyDeleteI'm not quite clear on why the tumor is unresectable. If the new tumor is in the right hemisphere, why can't he have a resection there? Is it too deep or in a critical location? This is important since a number of good trials include tumor resection.
Did they say what the problem was with the frozen sample that made genetic testing impossible? This is also important.
Our hospital canceled our apto at DFI because there are no spots available at this time. However we still wanted to see them as we have some questions. We got another apto for tomorrow. In July they said surgery was not an option because they already removed part of his left frontal lobe, and the tumor had invaded the right frontal lobe as well. That big tumor has been decreasing in size since we started TMZ and some of the cocktail approach. Now this new tumor is growing on the right again. Our hospital only gave us the option to do the chemo combo that I mentioned on this post. We are going to three other cancer centers to explore any other possible options. If you think of any question that can be helpful I can still bring it to the other places.
ReplyDeleteI believe they said the IDH1 testing couldnt be done because of some technical difficulties, and something to do with the slides.
With an oligoastrocytoma, is there a reason you haven't done radiation and PCV? My husband has an oligoastrocytoma now (previously was oligo II in 2009, had resection no further treatment). It's now an oligoastro, half grade II and half grade III. We are at UCLA. He does have IDHI and co-deletions, but the majority of people with this tumor make-up and tumors in the frontal lobes have the same make-up. Studies show that radiation with PCV is the best treatment for this type of tumor. It's basically the standard now at UCLA for anyone with regrowth of a grade II or recurrence/progression to a higher grade.
ReplyDeleteThe diagnosis of "oligastrocytoma" is falling out of favor in the era of genomics. Most of these tumors can be considered as either oligodendroglioma or astrocytoma based on genetic alterations (1p/19q codeletion along with TERT promoter mutation is the hallmark of oligodendroglioma; IDH1-mutant astrocytoma, in contrast, has p53 mutation and ATRX mutation/loss).
DeleteCCNU is probably the most important part of PCV. It's debatable whether vincristine provides any additional benefit to make the toxicity a worthwhile trade-off.
That's correct. My husband's tumor is still treated like an oligo because of the co-deletions and IDHI mutations. However, approximately 65% of people with oligos who have the co-deletions also have the IDHI markers. IDHI is not for astrocytomas only. In fact, I read something recently (I wish I could recall where) that people with IDHI mutations were living 20+ years after standard treatment after aggressive resection, radiation, and chemo. According to UCLA, the wave of research is all towards treating IDHI tumors now. They believe that's the key towards stopping growth.
Deletefraleylp, Stephen has written a lot about IDH mutations on astroytoma options site - in case you are interested you should start there :)
DeleteYes IDH1 mutations are common in both oligodendroglioma and astrocytoma. Virtually all oligodendrogliomas with true 1p/19q codeletion (loss of one entire copy of both 1p and 19q) also have an IDH1 or IDH2 mutation.
DeleteI just found out that my husband tumor has IDH 1 mutation and some amplification of EGFR but not the V3 mutation. He was diagnosed with oligoastrocytoma grade IV, MGMT score is 7.0, and FISH analysis showed loss of 19q but NOT 1p (more astrocytoma behavior). I don't understand much of any of these test but I truly think his tumor has probably turned into a glioblastoma looking at how aggressive it grew. But thats just me thinking. MSK is gonna try to run more genetic tests but the sample is from 5 years ago.
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