› Forums › General Melanoma Community › What should I do?
- This topic has 7 replies, 3 voices, and was last updated 6 years, 11 months ago by
Christine.P.
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- May 23, 2017 at 11:34 pm
I recently posted that I have 4 new tumors in my right leg, hip, and lower back and that I also just recently found out I am BRAF positive. I did 3 doses of ipi/nivo and have been on just nivo for almost a year.
At my last appointment my doctor mentioned Tak/Mef, but now it seems she is pushing me to stay on nivo and postpone the targeted therapy. All I can get her to say when I ask why is that the progression is
"slow" and Tak/Mek only stops progression for 10-11 months (in most people).I have 2 pressing questions/thoughts.
1. While I know it's good that there is no progression to the lungs, etc. I am not understanding how 4 new tumors in 3 months (since the last PET scan) is "slow." Is that actually slow?
2. Why isn't it better to do the targeted therapy now when the tumor burden is low than to wait until it spreads more? I don't understand that part.
I have a nivo infusion tomorrow and will ask the nurse to make an appointment for me with my doctor so we can talk about this in person. (After our initial appt when she told me about the targeted therapy, I developed new questions and emailed her twice. Both times I got a one-sentence "answer." I know she is busy and generally just terrible at email, but this is important to me. I know she'll be better in person.)
So, what would you all do or recommend? Start Tak/Mef now or wait? I know you can't tell me what to do, but I guess I want to know if I'm wrong or unreasonable to think now would be better.
It's so hard to know what to do. I hate this disease.
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- May 24, 2017 at 12:47 am
Hi Christine,
If I were in your shoes I would consult with another oncologist. When I was first diagnosed I switched oncologists because I wasn't satisfied and I'm very happy that I did. I think it is important that you get your questions answered and if your current oncologist is too busy to spend time answering you or discussing options with you then perhaps there is another out there for you.
I'm definitely in agreement with you that it is hard to know what to do and I'm right there with you hating this disease. I wish you well.
Jennifer
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- May 24, 2017 at 1:30 am
Thanks, Jennifer. One of the saddest and most frustrating things is that this is my 2nd oncologist. I switched hospitals and oncologists shortly after my initial surgeries because they would not listen to me or keep me in the loop. Usually she is very good; apparently she just stinks at emails. I'm going to give her one more chance when we talk in person (not sure when that will be; I have to make an appt tomorrow when I go for my infusion), but then I concede that I will have to consider a switch.
I'm hoping someone on here can speak to their options and decisions and understanding about whether Taf/Mek is better with a lower tumor burden or if tumor burden matters.
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- May 25, 2017 at 1:57 am
This site says: "The BRAF drugs often give a pronounced reduction in tumor burden but the duration of response can be limited."
http://melanomainternational.org/melanoma-facts/melanoma-treatment-stage-iv/#.WSY4jBPytN0
So if it were me, I'd want to stick with the anti-PD1 unless it definitely wasn't working anymore.
If you stop anti-PD1, go to BRAF drugs and then they stop working, it might be hard (insurance-wise) to get back on the anti-PD1. Also, there might be biological reasons to not jump around between therapies. Just speculating, but maybe if you stop anti-PD1 any marginally resistant cells might have time to proliferate. If the anti-PD1 is holding things somewhat in check, maybe it's best to let it continue as long as possible.
Wishing you the best. I'm glad you have a fall-back in case you need it. You're luckier in that way than my husband, who is BRAF negative.
-Betsy
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- May 25, 2017 at 2:41 am
Thanks, Betsy. I guess I'm in a sort of nebulous stage because since my last PET scan in March, I have four new tumors, so there is progression – just not yet to lungs or brain or elsewhere. (The primary was in my right calf and the new tumors are in my calf, hip, and lower back.) I guess I just don't understand how waiting for the cancer to spread further is better, but I understand the limits of the targeted therapy. I feel like no matter what I choose, my time without progression is limited anyway.
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- May 25, 2017 at 3:02 am
Page 2 of this article is most interesting, but page 1 is interesing as well.
http://www.targetedonc.com/news/braf-mek-versus-immunotherapy-which-to-use-first-in-melanoma"There is a well-conceived trial that is a randomized phase III study in which patients will be randomly allocated to get upfront immunotherapy with ipilimumab plus nivolumab, or dabrafenib and trametinib , versus the reciprocal if they have BRAF-mutated melanoma. So you either get BRAF/MEK drugs and if you progress you switch to immunotherapy, or you get the immunotherapy first and then when you progress, you switch to BRAF/MEK. The endpoint there has got to be either the second progression or survival, and that's going to take a long time. These are both very effective regimens. Each one of them has well over a 50% response rate and each one of them has a 2-year median survival. The implication here is that we're going to have to wait a long time to see a difference. At the end of the day, you might not see that much of a difference, but I'm not betting either way. My position in the debate would be in favor of the use of the targeted therapy first, but there are arguments either way that are meritorious. We'll have to see."
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- May 26, 2017 at 2:59 am
Thank you for this, Betsy. It makes me feel a little better about deciding to go ahead with Tak/Mef. I appreciate you taking time to find and post this for me.
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