› Forums › General Melanoma Community › 2nd TIL Trial Followup – Not As Good As I Hoped Nor As Bad As I Feared
- This topic has 8 replies, 5 voices, and was last updated 7 years, 7 months ago by
Mat.
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- July 19, 2018 at 11:52 pm
I concluded three days of driving the 2.5 hours or so each way to Bethesda today with a meeting with my doctors at NIH. Mixed news again.
At first they were nervous about my post-radiation brain scan. My local radiation oncologist let me get that done at NIH because I had this follow up coming up. Dr. Goff was a little concerned about a couple of things, but a call and quick conversation with the radiation oncologist put those concerns to rest. A good thing.
I had been on pins and needles for several weeks because within a week or so of my last scans in May I felt what I believed to be another cancerous lymph node below and to the right of my navel. Although that was noted by the radiologist as a soft tissue lesion and potential metastasis, Dr. Goff and her team compared this scan to my previous scans and she said it had been there for a while and really hadn't increased in size. (On the radiology report it said it was slightly larger. A difference in measuring techinque, maybe?) Dr. Goff explained that I would have lost some muscle during and after the treatment, and that now I could notice this lump whereas before it may have been buried in the muscle and fat. It was a big relief to hear all that.
The main lesions in my chest have increased in size slightly overall. One is unchanged to slightly smaller, the other slightly larger. Not what any of us wanted to see, but it means it's not time to push the panic button yet. So I'm still classified as "stable disease." There is a very slight possibility she said that the tumors could begin to shrink between now and my next follow up, but that I shouldn't expect or count on that, as it is very unlikely.
The spot that has been showing up on the head of my right femur is unchanged, although still considered suspicious for metastasis. And for the second scan in a row there was no mention of a similar spot that had been seen earlier on the left Iliac crest of my pelvis. Last time I was told that it may not have been visible due to the "cut" of the MRI, but as a layman it seems unlikely to me that it wouldn't show up on two scans in a row if it was still there. But again, I'm not the expert.
Dr. Goff said she plans to visit the lab and ask if they are doing anything new and exciting with my cells that could potentially work better for me. I assume that would mean going through this process again. That may be a tough call on my part. I handled it once but now I know how it makes you feel I don't know if I would have it in me to do again.
So that's what's up with me. I hope everyone is getting a chance to enjoy this beautiful summer!
-Bill
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- July 20, 2018 at 6:02 pm
Hi Bill, has there been any talk of targeted radiation to the lung tumor?
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- July 20, 2018 at 6:41 pm
Hi Ed,
Back early last year the plan was to irradiate that and then resume Keytruda. But Dr. Sharfman thought my odds were better with the trial at Johns Hopkins. After that failed I asked about it but was told it was too big and they couldn't give me a high enough dose to get rid of it.
Last week I went to the medical cannabis dispensary near my house and got some Rick Simpson oil. I personally know two people who credit their remission to it. I'm going to start using it and see what happens. I know things like that have been the source of some controversy on this board, and I would never suggest that someone who is just starting down the road with melanoma should use something like that instead of the available approved treatments. But I'm well past all of that, and I figure it's time to add some alternative medicine to what the docs want to do. Especially right now, since I'm not getting any active treatment.
-Bill
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- July 20, 2018 at 8:47 pm
The reason I brought up radiation is from reading some of the stuff Dr. Jason Luke is doing in Chicago which radiation and Pd-1 together. The idea is killing off some of the tumor so antigens get recognized by the immune system and the t-cell then can go after the tumor. I don't think that radiation alone would do the trick but working with Pd-1 or in your case the TIL's program might have the t-cells just needing a little push. Best Wishes Bill!!!Ed
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- July 21, 2018 at 2:37 pm
Last year the radiation/Keytruda combo was what we were going to do. Dr. Sharfman talked about the "synergy" between the two. But he thought that given the results they were getting that I stood a better chance in the anti-LAG3 trial, but unfortunately that didn't work. If NIH doesn't have a solution for me I will ask about the radation/Keytruda again in addition to asking about other possible options.
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- July 21, 2018 at 2:08 pm
Hey Bill,
Sorry that the results of your scans show that all your various tortures did not wipe out the melanoma just yet. However, stable is good, and I am still hopeful that you will see your lesions diminish on future scans!!! I don't blame you for opting to add something to your treatment plan. Your point of using proven, advanced melanoma treatments first and foremost…and add as needed…is well put. I am glad that it sounds as though your doc is going to look to see if there are any "out of the box" treatments that your melanoma could respond to. We have another member here whose husband has done very well on a treatment typically used for HER-2 positive breast cancer. And finally, I agree with Ed. I would be asking about the addition of some targeted radiation to those persistent lesions. Lots of data shows that for many, radiation combined with other therapies can be really helpful.
Hang in there. Summer is a beautiful thing, isn't it? Celeste
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- July 21, 2018 at 3:10 pm
Hi Bill, if you are up for a little melanoma research that requires some effort I watched a presentation by Dr. Omid Hamid that is excellent but takes some effort to get on. First the presentation links from his Twitter account which I will give you below. second step is to scroll back to May 7th and click on Peer View presentation. This is the hard part, you have to sign up and join but no strings attached. I click on watch presentation then fill out the email stuff and name and away you go!!! Dr. Hamid presents towards the end about 90 min in to presentation, the other topics are interesting but not melanoma specific. A couple of treatment topics you might find interesting are NKTR-214, Pivot trial, pro bodies trial, OX-40+Nivo trial and the Advise trial. Best Wishes!!! Ed. https://mobile.twitter.com/OmidHamidMD
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- July 22, 2018 at 5:22 pm
Sorry you didn't get the results you were hoping for Bill. Stable is still a good result. Hoping you get that delayed response.
Brian
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