Home Forums Melanoma Diagnosis: Stage IV Mixed Response Anti-PD1

  • This topic is empty.
Viewing 12 posts - 1 through 12 (of 12 total)
  • Author
  • #22000

    Hi all,

    I just wanted to report some results from my first cycle on BMS Anti-PD1 and Anti-KIR trial which I started on April 1 this year. I had a high tumor burden going into the trial and I was very sick, and extremely weak. After a few infusions I noticed many of my tumors shrunk (especially my largest tumors), and others went away completely (small skin lesions). Also, my strength increased, my appetite came back, and overall, I was feeling much, much better. Now, physically, I feel pretty good. My LDH dropped to 293 which isn’t that bad, especially from where I was at, and how many tumors I had. However, I received my first scan on the trial -about 7-8 week point- my scans did not mirror my positivity and overall my new, good well-being. So, I’m a bit bummed, and confused, to say the least, the results show a mixture of things. Basically some tumors have resolved or shrunk, but there are many new tumors, and others grew. My onc said we’ll see how this next cycle goes and this type of treatment can continue to boost my immune system. My impression from my appointment with my onc that I’ll have a low percentage of this trial working.

    I’m wondering have any Anti-PD1 patients continued to respond after their initial cycle/scans showed mixed responses?

    What do you do with a mixed response? Some shrunking tumors but some new tumors.

    Also, have any patients have no response initially, and then respond with more infusions?

    At this point I’m staying on the trial, but I’m not sure what to expect.

    I am also trying to be proactive and gathering as much information about what other treatments are available to me, of needed. I’ve already had Mage A3 vaccine trial, ipi, Zelboraf, taf/MEK, and now Anti-PD1/Anti-KIR trial. Not too many options left…



    Catherine Poole

    Hi Shane,

    Sorry to hear about your mixed response. I don’t think many are on that trial to chime in. But I do know there are folks with delayed responses to PD1 and it is different for many. I hope this next infusion does the trick for you. Keep in touch.



    Congratulations on feeling much better!!!

    For response patterns for Nivo alone, here’s Dr. Mario Sznol on the phase I Nivo study, http://theoncologist.alphamedpress.org/site/misc/CP_ASCO2013_7.xhtml” class=”bbcode_url”>http://theoncologist.alphamedpress.org/site/misc/CP_ASCO2013_7.xhtml


    The kinetics of nivolumab response were atypical. While some patients had a rapid response, as early as eight weeks into therapy, “some patients may have new tumors or growth of existing tumors before developing a meaningful response,” Dr. Sznol said. Patients also continued to respond even after nivolumab was discontinued.

    I’d bet the “kinetics” are probably somewhat similar for at least some of the Nivo combo trials as well.

    Had my first scans for the same trial. With comparatively light (1) tumor load, the 8 week scans showed stable disease from baseline. I got “C2D15” cycle 2 day 15 dose of Nivo alone yesterday.


    Thanks Kyle. I’m glad you seem to be stable, and feeling well. I’m taking the same approach as you and comparing response from Anti-PD1 statistics. I have to say, the side effects are non existent, which is great. I’m hoping this drug continues to work!

    I’m just curious, were you aware, or notified, if you have any tumor biomarkers (like PDL1) going into the trial?

    I’m very interested in knowing gene mutations like BRAF, NRAS, etc. that might allow the patient to choose which type of treatment has the highest percentage of working for you.

    For example the numerous publications that demonstrated the relationship between expression of PDL1 and PD1:


    At this point, for at least me, I’m already on the trial so it doesn’t matter, but I don’t know if my tumors express PDL1. Going into the trial I would have liked to know that information ahead of time. I think these biomarkers are good indicators of which types of treatment give the patient the best chance.




    Shane, last night I was skimming through the abstract topics for ASCO 2014 online. Pretty sure I saw an abstract (maybe by Sznol (sp?) at Yale) regarding BRAF status in various immunotherapies. The abstract was not yet available online, but look out for it (I think it said it would be available on Monday)


    Shane, I have a short list (PDL1 expression, HLA A2, NY-ESO-1) I am interested to know, and I’ll ask if I have to exit this trial. I figure then those questions might be meaningful to help me get to a next treatment.

    Since they say many still benefit from PD1 drugs even if PDL1 is not highly expressed, I’m not asking about that now.

    My tumors tested BRAF V600* negative (a G466E mutation was found) in 2010. And NRAS positive (G12A mutation) in 2011. My cancer center sequenced one of my tumors, I think, for the NRAS.


    Shane, I just read the radiology report for my first scans on this trial, at the end of cycle 1/start of cycle 2. While it still fits the definition of ‘stable disease’, it’s not unchanged:


    Enlargement of a precarinal lymph node is seen now measuring 3.2 x 3.2 cm in size compared 2.4 x 3.0 cm previously. A subcarinal lymph node is now seen measuring 1.6 x 2.0 cm in size.

    So the original one is a little bigger, and there’s a second one now.

    I’ll get my next scans for the end of cycle 2 in a few weeks. The coordinator explained that for now, sometimes the tumors get bigger with TILs. So I don’t know if there will be a response or not yet. Can’t call it a mixed response, just ‘stable disease’ (less than 20% growth of original tumor on its longest diameter from baseline).


    Thanks for Kyle. How are you doing? My oncologist has been giving me similar thought about this type of treatment; it can get worse before better. Which makes sense for the first cycle and scan, but after that we will know more on the second scan. Keep us in touch what happens on your second scan.

    As for me, I think I have leveled off. Which is fine I guess if this drug can keep me stable for a while. I’m still feeling ok, but I’m not sure whats going to happen each time I go to my doctors appointment (every two weeks). It seems every time I go into the office my oncologist makes a decision whether or not if I should continue with the treatment. So far so good, but I’m nervous about it.

    I am planning on going to MD Anderson soon to have a tumor to removed from my back and test for their TIL therapy. Doesn’t mean I’m going to switch to their trial, I’m using this as an ‘insurance’ plan. If my TIL’s grow, they can freeze them and I can use this down the road.

    I haven’t been able to get anywhere with learning more about my gene mutations or biomarkers though.




    My husband is on same trial. 3mg nivo/3mg KIR (2wks/4wks). We are having some issues with the stomach tumor increasing and causing bleeding. They gave him a transfusion to help with that and he did get third treatment. He will get another tx July 2 and CT July 9th. I will try to keep you both posted. He is BRAF neg NRAS positive. There is a theory that his tumors are flaring which can happen. We shall see. It’s nice to read about others experiences. Maybe we can start a Nivo/KIR thread.


    Hi Friends,

    I started the PD1/ anti Kir trial March 18. I had my first set of scans May 9 and am coming up to my second set of scans July 2. My first set of scans doctors were pleased they said everything was stable. Although the actual scan report says my mediastinum node slightly increased: Slightly increased size of retrotracheal/upper left paratracheal lymph node, now 3.4 x 3.0 cm, previously 2.5 x 2.4 cm but I have no new tumors.

    kylez- Im confused on your measurement post fitting the “definition of stable disease” when there was an enlargement. Maybe mine above fits that definition too because the doctors said everything was stable.

    My doctors did warn me about have growth or tumor flare with the first scans so they were too concerned. I am tolerating the drugs well. However, I was having alot of hot flashes and rapid heart beats. My thyroid was showing it to be hyperthyroid. But by the next biweekly visit, hot flashes gone and no crazy heart beat. However, my thyroid counts turned to hypothroidism and started taking synthroid. My doctors say it is fairly common to have this happen with immunotherapy.

    Fayfighters – there is a post about PD1 and Anti-KIr. I think Shane started it and I came in late and added to it about a month ago. Where is your husband receiving his treatment?

    Shane- stay positive ! I am sorry about your mixed response. I stay in touch with my doctors at NIH and shared my results with them. They also said PD1 is slow to get a response and is slow working.

    I will keep in touch after my next set of scans coming up this week. Although I wont get the results until the following week before treatment.



    I think I know now that when my doctor says “stable”, “response”, etc. he may be speaking terms of “RECIST”, i.e. http://en.wikipedia.org/wiki/Response_Evaluation_Criteria_in_Solid_Tumors” class=”bbcode_url”>http://en.wikipedia.org/wiki/Response_Evaluation_Criteria_in_Solid_Tumors. From what my trial coordinator told me briefly, these are the criteria being used.

    Hope each of you will get good news on your end-of-cycle-2 scans.


    Yes, that is correct. RECIST (current version 1.1) is what is used to measure tumor response to cancer therapies. Along with RECIST 1.1, when evaluating tumor responses to immunotherapies, oncologists are now frequently using immune-related response criteria (irRC). The irRC take into account the facts that immunotherapies often take longer to indicate a positive response than conventional chemotherapies, and that with the immunotherapies, tumors can appear to show progression (i.e., increase in size) before they show a positive response (i.e., shrinkage) to the immunotherapy.

Viewing 12 posts - 1 through 12 (of 12 total)
  • The forum ‘Melanoma Diagnosis: Stage IV’ is closed to new topics and replies.