Home Forums Melanoma Diagnosis: Stage IV Stable after WBR, on to PD-1 trial

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  • #21525
    SteveH230
    Participant

    I just thought I would offer some good news and encouragement to those who are currently dealing with brain mets, seeking access to PD-1 trials, and/or considering WBR. The quick summary for my wife Heather is that she did IL-2 last fall and then Ipi which ended in March. Lots of mets in liver, spleen, soft tissue, etc. Everything was stable after Ipi except for 2 tiny brain mets of her meninges (2mm and 1mm). SRS stabilized them in May, but a new one popped up (4mm) on the June scans. The doctors were worried about it being leptomeningeal disease, but more MRIs ruled this out.

    Rather than risk this happening again with more SRS, her doctors at Emory (and 2nd opinion at MD Anderson) recommended Whole Brain Radiation plus Temodar. The idea being that it would stabilize everything (at worst) and prevent new things from popping up. July was no fun going through the treatment (fatigure, nausea, vomiting, daily trips to radiation), but it was all worth it!

    She got a “stable” MRI completed on Tuesday this week and we went straight to Vanderbilt yesterday to do the screening for the MK-3475 vs Chemo trial (for patients progressing on Ipi). Things are moving very fast and we will found out later today or tomorrow if she has been officially accepted and whether she will start on PD-1 or chemo. There is crossover available if you get chemo, so we are comforted by that. The trial nurse said that so far every single patient of theirs on the chemo arm has crossed over at the 12-week mark. Makes you wonder why it’s necessary to keep that part going, but rules are rules.

    Vanderbilt has an outstanding melanoma team and a TON of trials available, including at least 4 anti-PD1 trials (BMS & Merck vs chemo, Ipi-PD1 ‘concurrent’ combo, and Ipi-PD1 ‘sequential’). Though we are fairly new there and drive up from Atlanta, we are very happy with everything. Yesterday we had to do labs, consent forms, doctor visit, EKG, and a CT scan. Never had to wait more than 10 minutes for anything except the CT. Dr. Puzanov is quite a character and very upbeat/encouraging. Appreciate any thoughts and prayers you can send us as we await the news from randomization. We want the good stuff right out of the gate!

    Thank you,

    Steve

    #62176
    Sandalwood36
    Participant

    Thoughts and prayers are definitely with you both! Good luck and please keep us updated.

    #62177
    tbeau
    Participant

    Hi Steve:

    Thank you for sharing your story. You and your wife are in my thoughts and prayers. Praying that all will go well for Heather. She is very lucky to have you. Please keep us updated on Heather’s progress.

    #62178
    BNP68
    Participant

    Congrats on your latest successes Steve. From everything I’ve heard Sarah Canon seems like a great place to be. I’m curious what led you to the chemo vs. PD-1 trial over one of the sequential or concurrent PD-1/IPI trials. Have you read any of Johnathan’s post on the ADC trial he is doing at Sarah Canon? I’m in a PD-1 trial as well but I anxiously await Johnathan’s post about his trial incase I don’t respond to my current treatment. I”ll be keeping you and your wife in my prayers.

    Brian

    #62179
    Angela21
    Participant

    Steve,

    Thanks for posting your good news. Praying your wife gets anti-PD1 from the start.

    Angela

    #62180
    SteveH230
    Participant

    Thank you all for your encouragement and prayers, we greatly appreciate it. Should find out something Monday afternoon.

    Brian, she has already done Ipi and finished in March so is not eligible for the combo trials. I have seen Jonathan’s posts and it seems interesting, but also is a very early stage trial and adding patients slowly. We are at Vanderbilt for now, not Sarah Cannon.

    Thanks everyone,

    Steve

    #62181
    lak1
    Participant

    Wishing you a good outcome from the trial.

    Can you tell me how your wife is after WBRT.

    I had a single 3mm dural met the fear was of leptomenigneal disease but they decided it was not. My first 3month scan post gamma knife was clear the orignial lesion not being visible and nothing new. They discussed WBRT with me I said I was not keen and in the end they did not feel it was necessary. Loss of balance , loss of taste and slowness were the things that put me off and the immeidiate side effects that you describe. Has your wife had these side effects that put me off WBRT?

    #62182
    PatW
    Participant

    My brother had WBR and it was not as damaging as I expected. Between the WBR and Zelboraf (which he had concurrently) all of his brain mets died. He was very fatigued for several weeks after the WBR. He did not complain about taste or balance problems. He did complain about hearing impairment– he said that it felt like he had cotton in his ears. And whether from his (melanoma associated) stroke or the WBR, he did have memory problems and some cognitive problems. He couldn’t remember the passwords to his email or online banking, for example. And someone had to go with him to the doctor because, while he clearly understood what the doctor was saying during the consult, an hour later he couldn’t remember parts of it.

    With time, by brother learned to compensate for these problems, which were basically annoying and frustrating to him rather than affecting his quality of life. He got in the habit of bringing a small notebook with him at all times to write things down. He wrote down his passwords. He learned to slow down his speech so that his thinking could keep up with his speaking. He made out OK.

    WBR is nobody’s first choice of treatment. But it’s a heck of a lot better than leptomeningeal mets and, like just about every other melanoma treatment, people learn to minimize and adjust to the side effects and continue to enjoy life.

    #62183
    SteveH230
    Participant

    Lak-

    Her side effects were the sort of the same as with chemo she had done before (Carbo-Taxol): fatigue, nausea, vomiting, and slowness (physical not mental). She didn’t really have any neurological or cognitive problems nor vision/hearing issues. There were certain foods she didn’t want to eat and things that tasted bad to her, but I don’t think she really lost her sense of taste. She is eating fine now a month later. WBR mostly just made her physically weak, slow, and sick on and off for a few weeks. Keep in mind she also took 5 doses of Temodar during week two, which could have compounded the side effects. She has been feeling progressively better since the start of August (WBR ended 7/15). Hope that info helps. Every situation is unique and I would get at least one or two solid opinions before deciding what’s best for yourself.

    Steve

    #62184
    AndyT
    Participant

    Dear Steve,

    it was so utterly raessuring to read your post, thank you so much! My wife is on a somwhat similar path, we ran sucessfully on Zelboraf for 8 months, that failed and she was given dacarbazine, afraid that she could not go through ipi treatment due to really high LDH levels. So far dacarbazine managed to control her pelvic and lung metastase, but last week we were crushed by signs of brain mets – speech and hearing issues; CT confirmed she has multiple brain mets. We will probably start soon on temodar and WBR and sincerely hope to be able to follow your path to a a PD-1 trial.

    I wish all the best to your wife and you, may you have all the courage and strength!

    Andy

    #62185
    SteveH230
    Participant

    Andy, I know how scary it is to be in your shoes right now. We will be praying for you guys.

    Today we received more good news for Heather. She is officially enrolled and randomized to the study drug (MK-3475; Lambrolizumab) in the Merck phase 2 trial. There are 39 locations recruiting in the U.S. and elsewhere if anyone is looking:

    http://clinicaltrials.gov/ct2/show/NCT01704287?term=mk-3475&rank=2” class=”bbcode_url”>http://clinicaltrials.gov/ct2/show/NCT01704287?term=mk-3475&rank=2

    We go back to Vanderbilt on Thursday for the required biopsy and first infusion. Thanks to all for the thoughts and prayers.

    Steve

    #62186
    Anonymous
    Guest

    God’s speed Andy and Steve.

    Your wives have true partners in the two of you.

    You’re doing God’s work.

    Keep plugging away. We have your back.

    Jeff

    #62187
    AndyT
    Participant

    Hi to all, I have two questions and hope some of you have answers.

    1. Where could I find out which centres perform gamma knife/SRS on multiple brain mets in EU?

    2. How much do these procedures cost?

    Thank you all in advance!

    #62188
    SteveH230
    Participant

    AndyT wrote:

    Hi to all, I have two questions and hope some of you have answers.

    1. Where could I find out which centres perform gamma knife/SRS on multiple brain mets in EU?

    2. How much do these procedures cost?

    Thank you all in advance!

    Andy,

    I would recommend starting a new topic for this, as you may get more replies that way. or try messaging Catherine Poole on this. I am in the U.S., but each SRS procedure we have been billed for (to insurance) has been roughly $4-5k. This includes everything except the scans (usually done before for planning and several weeks later for assessment).

    Steve

    #62189
    AndyT
    Participant

    Thanks Steve:-) I actually found a list of gamma knife centres in EU, hope somebody else also finds it useful:

    http://www.elekta.com/patients/treatment-information/treatment-centers/leksell-gamma-knife/europe.html

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