› Forums › General Melanoma Community › Possible move to Stage 4
- This topic has 4 replies, 3 voices, and was last updated 7 years, 6 months ago by
brendon.
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- October 26, 2017 at 3:48 pm
Quick background: My wife had a .74mm deep melanoma removed from her lower back in Feb of 2015. This Feb, she noticed a lump in her groin area and it turned out to be melanoma. She had a CLND on May 4th. Two of the lymph nodes had melanoma in them, the elnlarged one and one other had traces.
Prior to surgery, the surgeon was concerned about a couple nodules that showed up in her lung and he suggested we try medicine first. Our medical oncologist thought surgery was the best way to go. He won and they did the CLND. In July, he rescanned the lung and it was clear, so his hunch was right!
She started Keytruda in Mid July. We just had the first scans this week; brain MRI and CT scan of pelvis/abdomen/chest. Brain was clear, but the Dr said he is worried about a nodule on the lung. It's 1.2cm X 1.8cm, in upper right lobe. My wife has had a wicked bad "cold" for the past two weeks (she's a teacher, she gets these things now and then). The Doctor said that there's a chance that the nodules are from an infection of some kind, but we'll do a needly biopsy next week.
If this thing is melanoma, it certainly grew pretty fast!
I'm assuming that she is one of the ones that doesn't respond to Keytruda.
He gave us three possible next steps if this thing in the lung is melanoma. He suggested against surgery.
1- Try another immunotherapy such as Ipi and Nivo.
2- Go to the BRAF cocktail of dab and tram
3- Enter a trial. The trial he suggested is one with Nivo and a compound called CB-839, a glucose inhibitor.
We're leaning towards the trial. The Doc really wants to keep the BRAF cocktail in our pocket for as long as we can.
Thoughts? How many of you have had lung mets? It will be helpful to hear some stories of success with dealing with these things.
We're hoping and praying that we don't have to go down this road just yet, but I'm also a planner, so trying to get the best info I can and be ready. We are in great hands with the folks at SCCA, we're so thankful to have them in our back yard!
Thank you all for sharing what you're going through. I know there is a village behind and with every single one of us.
Jeff
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- October 27, 2017 at 4:51 pm
Hi Jeff – I can't speak about CB-839 but I can attest to how powerful the immunotherapy treatments are now, as are the BRAF drugs!! My sister dealt with lung mets – in fact, mets throughout her body and brain (have a look at her profile) – and is on the verge of being declared NED officially. We are in Canada, where docs are loathe to operate, so ALL of her treatment has been via targeted drugs (the BRAF combo) and immunotherapy (2 rounds of ipi/nivo combo and nivo only since). Her prognosis was extremely poor initially and she has since shocked all her doctors with the response she's had.
I'm sorry that you and your wife have been confronted by this demon but, with the new treatments, there's so much hope now and it sounds like her oncologist has a treatment plan plus back-up plans in place, which is good! If it was me, I wouldn't hesitate to try immuno first before surgery – I often wonder how, once mel becomes systemic, it can be gotten rid of without a "systemic" treatment.
There's lots of info on here about lung mets and all the treatments available. Use the search function and it'll bring you a wealth of posts so you'll learn how others were treated, what worked for them and what didn't.
Whatever treatment you select, I wish you the best possible outcome!! Take care.
Barb
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- October 30, 2017 at 5:43 am
Hi Jeff,
I am also in Seattle, being treated at SCCA and on Keytruda. I will have my 5th infusion on Tuesday this week and just got the results of my first CT scan since starting Keytuda and it looks like it’s working for me. I previously had Ipi/Nivo but had to stop after three doses due to side effects, and the cancer progressed while I was off treatment.
Like you guys, I am keeping the BRAF targeted drugs as a potential future back up plan..
i recently went through a similar decision process when contemplating what to do after a ‘fail’ on the Ipi/nivo, including considering trials. My wife and I took a trip to Memorial Sloan Kettering in New York for a second opinion to help with the decision. Ultimately I decided on Keytruda as the next step for me.
Happy to discuss this further if you think it might be of any help.
Brendon
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- October 30, 2017 at 8:40 pm
Hi Brendon,
Sounds like you and my wife are about on the same schedule! She received her 5th infusion last Wednesday. May I ask where you have mets? We are so grateful for SCCA, everyone there is absolutely amazing! Dr. Byrd did the CLND, and we are seeing Dr. Veatch. Feel free to email me at [email protected].
Jeff
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- November 2, 2017 at 6:57 pm
Hi Jeff, I sent you an email a couple of days ago. Mine is [email protected].
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