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February 14, 2016 at 9:11 pm #22766
What a week…last week we found out my husband has 8 more very small “strokes/infarcts” in his brain which were picked up on brain MRI as routine melanoma care. He has no neurological symptoms. He has been on BRAF/Mek since end of Aug with 50% reduction in his pelvic lymph node tumors at his first scan and more at the next. He was feeling great until his eyesight starting getting blurry which the eye dr. attributed to the Mek. Because of the brain activity and the eyesight, they took him off the BRAF/Mek for the week and he spent two days as a inpatient while the neurologists tried to figure out how the strokes are happening. They have found no cause to date but put him on blood thinners. His latest CT scans and brain MRI say no metastisis any where outside the pelvic and groin nodes. This is the good news. The bad news is that the infarcts in his brain will keep him out of some trials and the Dr. is now thinking he sees some growth in a few of the nodes and think he is already progressing on BRAF/Mek. He has already done ipi and PD1. No more FDA approved drugs to try. Dr. not a fan of TVEC alone. He is talking major surgery to remove all the cancer they can see. They will do PET on Wed to supplement what they see on CT scans. Thank you Mikers for posting info. on PET scans – I think they are going to look at the nodes that aren’t responding to BRAF/Mek to see if there is uptake there. One of them looks necrotic but Dr. says that isn’t always a good thing. We are exhausted and stunned that we were told BRAF/Mek was working a couple of weeks ago and now Dr has apparently changed his mind…Dr. claims to have patients they have put into “remission” for quite a while with surgery alone..February 14, 2016 at 10:54 pm #68514Catherine PooleKeymaster What a roller coaster you folks are on. You have my deepest wish for a more stable journey. I agree that surgery is a great way to debulk the melanoma tumors and if feasible put the disease in remission. These tumors send out seeds to start new tumors, so when you get rid of them the spread can be hampered and in some cases stopped. I do know of patients who only had surgery and became NED. So I imagine this would be tricky with the blood thinners etc. Remind me where you are going and if they are great experts.February 15, 2016 at 1:47 am #68515 Mass General…they have been great but I think the strokes and, as you mentioned, the blood thinners are making things more complicated for them!February 15, 2016 at 12:03 pm #68516MikersParticipant Jjawillett, note that there is also SRS for the body (torso) – “cyber knife” which can handle big lesions also (several cm as far as I know). It can be alternative for surgery – not invasive, quick and reliable. Although not sure if you can get if free.
Probably should stay a bit more with BRAF even while making surgery?February 15, 2016 at 12:05 pm #68517MikersParticipant
Also there are some trials where the test triple inhibitors. I would consider.February 15, 2016 at 4:10 pm #68518 Thanks mikers..when we meet with surgeon and onc, I’ll ask about alternative to surgery…PET on wed should give Drs all info thy need to decide whether surgery can be done or something less invasive…plan is to stay on braf but off mek since his eyesight is a prob now..he has to get braf drug outside of trial and now they are “closed” for holiday unless emergency so not on anything and we are annoyed but trying to stay calm..uneasy literally not being on anythingFebruary 15, 2016 at 11:55 pm #68519msue5Participant I’m sorry for you both for this situation. It is a roller coaster ride and will be thinking of you and your husband. Let us know how things go.
Mary SueFebruary 17, 2016 at 5:00 pm #68520
Had PET/CT scan and brain mri yesterday. A week and a half ago, his CT report said “good partial response” to BRAF/Mek. Five days after that, Dr. said that he relooked at the areas that have not responded and they look “aggressive” and possibly progressing on BRAF/Mek. He tells us surgery could be a reasonable option. Three days later, we had the PET/CT scan combo and brain mri and the news today is that area is too large to do surgery and that cancer is spreading and there is a “sub-cutaneous” lesion in his chest. Up until now, cancer was confined to the pelvic nodes i.e. iliac, etc. Dr. has us lined up to see radiation Dr. on Mon and he will have radiation “mapping” the same day. Hoping for a synergistic effect. Anyone have experience with radiation and their melanoma? They are talking about keeping him on Dabrafenib and combining with ipi (which he has done before)…I am beyond devastated and am literally speechless. Outside of calling my mother (who is a nurse), you were all the next stop because I have always gotten strength from understanding the medical side of things…He was diagnosed Stage 4 (with recurrence in left groin) in Aug, 2014 and ipi, PD1 and BRAF/Mek since then and no organ mets but it is progressing.February 17, 2016 at 9:49 pm #68521MathewRParticipant Very sorry to hear. Targeted radiation can be very effective for specific tumors. (I’m sure that you’ve seen prior posts regarding brain and bone mets and targeted radiation.) I think that the theory for continuing Tafinlar is that your husband is still getting some clinical benefit from the drug. I suspect that they are pulling the Mekinist because it has been shown to increase the likelihood of GI issues (e.g., colitis) when used in combination with ipi. Is there any chance that you can get ipi/nivo instead of ipi alone?February 18, 2016 at 1:05 am #68522 I had also thought of the combo as he had done ipi and then pd1 but not the two tog as no trials for him back then..dr said he was going to review all of the meds he has tried and come up with a drug plan in addition to the radiation but in the meantime he will stay on dabrafenib..he was literally off all drugs for a week while thy sorted out infarcts in brain and he started feeling symptomatic with the cancer..so stressful and scary..in the past, dr has considered TIL for him, IL2 but those off the table..we signed forms to have his tumor tested for a match against possible novel therapy..thx for weighing in..I really apprec itFebruary 18, 2016 at 8:21 am #68523gostanParticipant This news definitely feels awful to all of us. We all hope that you & your husband can find the strength to remain strong during this trying time.
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