Home Forums Melanoma Diagnosis: Stage IV starting Keytruda anti PD1

  • This topic is empty.
Viewing 15 posts - 1 through 15 (of 25 total)
  • Author
    Posts
  • #22347
    hass71
    Participant

    yesterday my wife had her first infusion of Keytruda the anti PD1 by Merck after failing Yervoy, we are expecting to have low response due to the large sizes of the tumors but this is our last hope after doing chemo and radiation for the brain and being negative on BRAF, has any one been on this treatment to share his experience and inform us with the side effects.

    #66284
    Catherine Poole
    Keymaster

    I don’t want to give you false hope, but I do know patients with heavy tumor burden who have responded to Keytruda (Jonathan on this forum) for one. The only other thing I can think of is the MEK drug alone for Braf negative (do you know if she is Nras positive?

    #66285
    rick1981
    Participant

    Hi there,

    My wife has a very high tumor load as well: multiple mets in liver, spleen, now 3 in her bones since the BRAF/MEK combo failed after 5 months, brain mets recently as well (treated with WBRT) and some small other sub-skin places that could be melanoma related. We had our 4th Keytruda infusion today and the blood work keeps improving (CRP values, lymfocytes, hemoglobine) so we HOPE she’s reponding – but too early too tell. Don’t give up!

    On side effects, they are virtually non-existing for her on Keytruda. Typically should be better than Ipi/Yervoy.

    Good luck,

    Rick

    #66286
    odonoghue80
    Participant

    Hi I’m on my second time trying an Anti-PD1 drug so keep up the hope. Last year I had a very high tumor burden, like your wife, too many to count – over 100, and I responded very well initially (BMS’s Anti-PD1). I had many, many large tumors under my skin and thankfully they shrank fairly quick. Unfortunately after about 5 months one tumor got out of control so switched to chemo and radiation. Last month I switched back to Keytruda and yesterday I had my second infusion. My blood looks great, hemoglobin keeps getting better, LDH is down to 157, and more importantly I’m feeling better. To note, I have no side effects to speak of. I hope your wife gets a quick response. Keep fighting.

    -Shane

    #66287
    rick1981
    Participant

    Hi Shane,

    That’s great to hear! And promising for all others out there that Keytruda can work after Opdivo failed (and likely vice versa)…

    Hope your situation keeps improving!

    Rick

    #66288
    hass71
    Participant

    it’s great to hear that you’re responding to treatment,

    she took her first cycle of Keytruda but the doctor prescribed Prednisone 60mg/day is that quantity of steroids ok with the treatment?

    what does high LDH indicates?

    #66289
    rick1981
    Participant

    LDH is a liver value and a good indicator of disease improvement or progression (primarily in case of liver mets I’d assume). However, it can be faulty at times. Also: each hospital has its own bandwidth of OK values so be careful when comparing values on boards like these.

    Our MD looks at:

    – hemoglobine (standard blood test value)

    – white blood cells (standard blood test value)

    – LDH

    – CRP

    – lymphecites

    – and two other liver tests

    Cheers,

    Rick

    #66290
    CraigG
    Participant

    Keytruda did not work for me either. Have a few brain mets and other fast growing tumors. This is my sixth chemo combo, (just gamma or cyber knifed) have been stage 4 since 2005:

    Tafinlar (dabrafenib) 300mg/day 2×2/day;75mg

    Mekinist 2mg/day 1/day

    I do not have wild melanoma, rather the type of BRAF is the V600E mutation.

    Good luck.

    Craig

    #66291
    hass71
    Participant

    is it ok to take 60 mg of prednisone daily while taking the keytruda treatment?

    what are the signs of a successful treatment with keytruda?

    #66292
    rick1981
    Participant

    Our Oncologist recommended max 8mg Medrol or 2mg dexamethasone; not sure how that compares to prednisone.

    On response, am also interested in this. Our onc also looks into things like hemoglobine, LDH, CRP

    Lymfecytes…

    #66293
    Jonathan
    Participant

    Hope things are improving for your wife on Keytruda. I know of a number of patients (probably including me) who have had brain mets that have apparently responded with anti-PD1 treatment, so I hope she’s one of those. BRAF status has no relevance to anti-PD1 response rate, and it’s not clear about Ipi – the official report is that there’s no relationship. If her LDH is improving, that’s a very good sign, as that’s an indicator of cell destruction overall, not just in the liver – so getting that normal suggests the melanoma is coming under control.

    Good luck,

    Jonathan

    #66294
    hass71
    Participant

    thank you Jonathan for the useful information, that what i sure hope, i’m facing 1 problem that is in my country i think i’m one of the first case getting treated with keytruda/anti PD1 and there’s no experience with these kind of treatments (even on yervoy) i faced the same thing so i get no information during the treatment regarding what’s happening with my wife, in fact this forum had helped me more than doctors did ;)

    #66295
    hass71
    Participant

    but I’ve a question, melanoma in our country is rare but from what i read i can see that most of who get treatment are coping well with it somehow but i see my wife from the day she started treatment and getting worse, she lost her hair since chemo and after that a while did a whole brain radiation and since then her hair didn’t grow yet, she’s in bed 90 percent of the time in pain and not able to lift her self up, has no appetite to eat and losing weight and the doctors gave me no explanation but that it’s because of the disease, is that normal? and what can i do to change this situation?

    #66296
    Jonathan
    Participant

    Hi again,

    I’m sure it’s very tough with your wife being lethargic and in pain – and that could be for a variety of reasons, not just melanoma. So the oncologists have to figure out the likely cause, given her lab and scan results. If her LDH and other critical labs are looking more normal, of course that’s a positive sign. She’s probably not due for CT or MRI scans quite yet, but that will be very important, of course. They may just be waiting for those – ask them.

    Other things they are probably aware of include possible dehydration. I know one patient/friend on the anti-PD1/Ipi combo who suffered severe lethargy, ran a high temperature, and was unable to keep her head up until that was taken care of – and now she’s doing extremely well. Admittedly, that combo is known to be particularly tough, but hopefully your oncologists are aware of the various complications – you seem to suggest this is very new territory for them, so if you don’t get satisfactory answers, perhaps press them to get more advice, either from Merck or other oncologists experienced with this sort of drug. Is the pain in her head?

    Best,

    Jonathan

    #66297
    hass71
    Participant

    a few days ago i lost the most precious person i have in this world, my wife died in my hand while i saying to her how much i love her, her heart stopped after a very hard struggle with cancer.

    it was a huge lost for me and i wish no one passes in similar condition.

    this forum has been very supportive

    thank you all

Viewing 15 posts - 1 through 15 (of 25 total)
  • The forum ‘Melanoma Diagnosis: Stage IV’ is closed to new topics and replies.