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Success on Temodar?

Forums General Melanoma Community Success on Temodar?

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      Well, the hits just keep on coming.

      Last week, I found out that the knee pain I’ve been struggling with since August when I was in a treatment washout period is actually a 5cm tumor in my femur. The good news is that we have a good plan for that — remove tumor, insert plate, surround with cement and then radiate the area for micro lesions — and we should be able to do it in early December. But, deep down I’m just screaming into the void because damn this has been such an impossible period of time.

      The tough part is that I need to assess the reality of how I’m really doing on treatment and whether or not it’s time to change course.

      On 11/8 when I reviewed my recent scans with my oncologist, it seemed like I was stable, but after reading the radiologists read out that doesn’t really seem to be accurate. I have some stability, but also a fair amount of growth across my lesions. Additionally, although I haven’t lost any additional weight, my 5’2 frame is still down at least 30lbs since July and my labs are just kind of wild right now — super high WBCs and Platelets are most concerning, but honestly many things are outside of the normal range. Also, after dealing with MONTHS of bleeding in my stomach, I was finally just prescribed Protonix (pretty furious about this total miss from the doctor managing the trial). This seems like it is helping my body to manage the bleeding, but we don’t know for sure yet and up until now my stomach tumor had been bleeding enough to require a blood transfusion every 10-14 days.

      Today, I met with my local oncologist at the Ohio State medical center (trial doctor is in Pittsburgh) and she was also concerned about my state. She said if I wanted to change course right now, she’d recommend me trying Temodar, hoping I gain some benefit and then searching for other trial options. Has anyone gained any longer term benefit from Temodar? I know MarkR was on it for a bit, but haven’t seen an update from him in a bit. Anyone else?

      Personally, I’d love to get into a LAG3 trial, but because I’m too heavily pre-treated for the current phases of trials.

      Are there other options out there that I’m not thinking of? You all know this, but I have an almost 4 year old little girl who needs me and I cannot go down without one hell of a fight.

      Thanks everyone for all your help!

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          I meant to add the treatments I’ve previously done.

          – Nivolumab (8 months) & SRS to brain after surgery

          – Ipi/Nivo (only tolerated 3 of 4 combo treatments), but saw significant shrinkage. Then added in SRS to left lobe of lung. After liver panel finally came back down to normal 5 months later, decided to hold on Nivolumab since my lung lesion was stable. Was able to enjoy a blissful 18months off treatment until stomach lesions arrived.

          – Started Vem/Cobi alongside Atezolizomab 9/15/20 and maintained benefit until 3/2021, when we saw a new lymph node lesion. Did lots of monitoring, while investigating clinical trial options and mostly held steady until June. In July, I finally signed the paperwork for a trial but due to what I believe to be endless foot dragging, I did not start the trial until 9/2.

          – Trial is a STING injection, which is meant to essentially make the tumors “hot” to your immune system again. I received 4 of these injections over 28 days and then started the immunotherapy part of the trial which is Ipi/Nivo on 9/28.

            Dear Amanda, so hard. Good to know you had a response from the ipi/nivo. My doc says that if my cancer returns, I will go right back on the combo as it seems to have kept it at bay. I think response takes a bit of time. Fingers so crossed for you to have a durable response.
              I think if I were in your shoes I would certainly give this trial a look:   A Study of NKTR-214 Combined with nivolumab vs nivolumab alone in participants with previously untreated inoperable or metastatic melanoma


              Here are some reports on NKTR-214:

              Obviously, it is the old Catch-22 ~ Phase 1 trials are untested drugs, just looking for dosing criteria.  You may luck up and have great results.  You may grow three heads. BUT – you get the drug!  VERSUS…  Phase 3 trials use already tested drugs that show promise but often have a lesser or more commonly used (and in the case of many patients – a tried and failed drug) in the comparison arm.

              Still, if you or your onc are interested in this treatment option, perhaps you could contact one of the trial coordinators or the company to find out if there are any compassionate use options.

              There is also this –  IL2 with ipi followed by nivo  –  Study does require a 3 week washout with no treatment.  Not great.  But, not as long as some.  IL2 is a bitch of a treatment, but when it works, it is great.

              There is this similar one – High dose IL2 in combination with anti-PD-1 to overcome anti-PD-1 resistance –

              Finally (at least in this pass of looking at currently recruiting options) – have you considered any sort of TIL options?  There is this: Gene Modified Immune cells (IL13Ralpha2 CAR T cells) After conditioning regimen for treatment of Stage IIIC or Stage IV melanoma  –

              Of course, there are also TIL options that do not involve being in a trial.

              These are all currently recruiting per the site.  If you scroll on each you can find sites at which the trial is offered as well as contact info for trial coordinators.  My constant advice in looking at trials is this:  If you are remotely interested in the trial – CALL!!!  You may determine you are not interested or fail to qualify.  However, you may find out additional info that is even more helpful than you expect.

              Sorry you are facing the surgery in December, but glad they have figured that part out and you have a plan.  Hopefully, your stomach (and blood supply!!!) will improve with your new treatment as well.  Hang in there.  Yours, c


                Really disappointing.  Mega thanks to Bubbles for the suggestions.  I was going to suggest TIL, but the IL2 ones sound worth investigating also, considering the success you’ve had (if I remember correctly) with ipi.  If it was me, I think I’d really check out the trial at Moffitt.  In fact, I might check out that one myself.  Natural to feel discouraged though.  Enjoy Thanksgiving and try to regroup.  Best of luck.  Warren
                  Hi Amanda

                  Am sorry for this bad news, but I hope they can solve your knee problem and the rest remains stable

                  I have not seen MarkR on the Board for a long time so I dont know how he is doing

                  I think Celeste and gopher list all the options, although there was a study on relatlimab plus nivo at ASCo which they claimed was promising (I am not sure)

                  I did see something on twitter today – have not seen it on these boards – and it;s a bit of a weird one but it’s BNT111 which is developed by BionTech (who made the Pfizer Biontech covid vaccine) and it uses mRNA to boost the immune system. I think BioNTech’s interest was in melanoma but then they used mRNA to develop their covid vaccine instead. Anyway the FDA just gave it fast track status based on good phase 1 results. It’s a long shot and I have no medical training and have not heard it mentioned on these Boards. But I did read about their melanoma interest long ago when they developed the covid vaccine which has been good.

                  My oncologist has not mentioned this at all and it coujld be false hope not even sure if there are trials, but if you google it you can find their press release. If anyone knows about it I hope they can report back

                  best wishes Mark

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