- March 10, 2019 at 7:27 pm
I admit, I'm scared. Four months ago I was a healthy 47 year old that had a lesion on the back of my scalp removed, and then 5 positive lymph nodes yanked in a dual neck resection.
Two Opdivo treatments later, and I'm full of cancer. They zapped 18 mets in my brain with the cyber knife, then general radiation to a spot on my T3. An MRI last weeks shows "lesions in every vertebrae". I have mets on my adrenal, lungs, innumerable on liver and spleen, multiple in the pelvis, in my abdomin, ribs . .
It hurts to move. It hurts to breathe.
I started Braf/Mek on Saturday. It makes my eyesight blurry for about 8 hours then clears up, I can live with that.
I don't understand how I am at this point, this fast.
Is there anything I should be doing?
Thank you all . . I hate that we are all in this together. And I am thankful I have you all.
Any advise would be more than welcome.
- March 10, 2019 at 8:31 pm
In March 2016 I had melanoma in some vertebrae and in many other bones. I was switched from Keytruda immunotherapy to Yervoy + Opdivo immunotherapy. My bone cancer is gone. I never had cancer in other organs. I hope something works for you. I was scared in March 2016 and asked my oncologist to estimate my survival time. She told me: More than 1 year, if the new treatment helps. Less that 1 year, if the new treatment fails.
- March 11, 2019 at 12:10 am
I am sorry you are dealing with all that you are, WW. It sounds like you are doing all the things you should. Targeted therapy (BRAF/MEK) is known for having a rapid response, while immunotherapy like Opdivo can take more time – with responses on average occurring around 3 months and sometimes as late as 6-10 months – as you can see by this graph in this post:
As far as who responds to immunotherapy and who doesn't – we can't explain it. As far as who progresses rapidly…being overrun with an incredibly high tumor burden in the blink of an eye….vs those who go for years before progression with what is considered "indolent" disease – (I wrote about that in 2012: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2012/04/what-ive-been-saying-about-indolent.html) we don't have answers for that either! Still – these are super important questions…and some researchers are working on finding the answers…because once we do know the answers I think we will have fewer folks suffer and progress!
My only other thoughts….and you and your doc may have already discussed these…I would be tempted to change back to the ipi/nivo combo once targeted therapy shrinks your tumor burden. My reasoning?
1. You were not on Opdivo long…so I think there is still hope that it (esp if combined with ipi/yervoy) can given you a durable response once your tumor burnden is decreased. (We have long known that the best responses to immunotherapy occur when there is low tumor burden.)
2. While there are some who are managed on targeted therapy very successfully for years and years….check out the posts by Richard K as an example…we also know that melanoma is a sneaky jerk that can find ways to "work around" the inhibition that BRAF/MEK can provide sometimes in about 9 months or so. So…some docs switch folks back to immunotherapy after getting a response to targeted therapy before the tumors can do that.
Just my 2 cents!!! I having been and will continue to wish you my best. Celeste
- March 11, 2019 at 3:22 pm
Celeste, I can't tell you how important you are to people who come here. Your vast wealth of knowledge, your wisdom and research and compassion and love is .. it means a lot. I see you respond to just about everyone that posts and . . lady, you are an ANGEL.
Thank you for your response. I'm printing out your answer and I am going to discuss this with my oncologist on Wednesday. Thank you for the hope, and thank you for being you.
- March 11, 2019 at 11:43 am
BRAF-MEK can clean up a heavy tumor burden and fast, including bone mets.
- March 11, 2019 at 1:32 pm
I can't add any advice (but you got the best advice above and like Celeste says, sounds like you are doing all the things recommended), but I wanted to say I'm thinking about you and wishing you the very best. This must be scary for sure, just know that we will send you all the positive vibes possible. Many many hugs.
- March 11, 2019 at 4:23 pm
You know this disease just sucks….you get up one morning healthy and the very next thing you know you are told you have melanoma and your whole world is turned upside down….I wish I had some great advice for you…but Celeste is the one with the great advice and the immense knowledge, not me. All I know is there is strength in numbers and that everyone on here is praying for you and sending you all the love and support possible. Hang in there and keep fighting!!! And know you are not alone!!!!
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