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October 26, 2012 at 11:18 am #20714patiParticipant
So I guess part of being in this community is sharing side effects…
I have one word for anti-PD1 Merck after 2 infusions = fatigue, fatigue, fatigue….
Blind arm so not sure whether getting 2 or 10mg; I am working full time and have 2 kids but still, I am feeling interferon almost like fatigue the sort of fatigue where you just have to “laydown/sleep now”!
The other effects where
-immediately (within 4 hours after infusion); fever like the first time just as if I had had a DV vaccine or interferon, the second time just fever like
-the first time palpable tumors become bigger, engorged, swollen, painful then “calming down”; the second time less so but now some are sore again. In measurable size the Dr noted no difference between infusion 1 and 2.
-the LDH “doubled” from infusion 1 to infusion 3 (so in 3 weeks went from 183 “normal” to 424 “above normal” -which freaked me out! but Dr immediately and takes rather as sigh of immune activation said they have seen that with many patients after 1st infusion )
-had some dry cough that came and went now has totally gone (but I had had a bad cold right before first infusion)
Note sure this is going in the right direction but here is hoping,
patiOctober 26, 2012 at 2:45 pm #57207CelesteParticipant
I too am in an anti-PD1 trial (BMS/vaccines at Moffitt) though the fact that I went into the trial NED, am only at a 1mg/kg dose, and had the vaccines for 6 months probably makes for different dynamics and side effects. I too travel for my care, though not the distances you have to deal with! At any rate, from what I’ve gleaned from others in my trial and my own experiences, fatigue and skin anomalies have been very common side effects. However, I have continued to work as a pediatric nurse practitioner and maintain my exercise routine throughout…though I fear that this has not been the case for many. Additionally, I still deal with what I call “flares” of irritation and inflammation in my skin after infusions. Often it consists of reddish papular lesions that simultaneously itch and are tender. The heat and inflammation of the vaccine sites in my thighs was tremendous after each round when that was ongoing. Even now, I currently have red patches in those areas that are just now calming down after my last infusion, Sept 7…and my last vaccines were administered in June of 2011. I often experience mild stomatitis with shallow ulcerations to the buccal mucosa and increased sensitivity to spicy foods after infusions.
But, bottom line, my side effects have been manageable and much less than many have had to deal with. I sincerely appreciate the face and sensitivity and realism you have managed to lend so tirelessly and eloquently to melanoma. It means more, to more people, than you will ever realize. I, for one, am grateful. I wish you the very best.
CelesteOctober 29, 2012 at 1:25 pm #57208FeistyDParticipant
I have been on Merck 3475 (anti-PD-1) for lung cancer for 6 months now. It’s been working very well, but I am starting to feel a few side effects. I get the itchy red spots as described above, mostly on my arms and legs, and the past few days some sharp muscle/joint pain, first in my upper back, now in my left wrist. I feel a little tired in the afternoons, and quite tired if I don’t get a rest (I am still working as a college professor). But the drug is working so well! I can put up with the pains by using aspirin/Aleve, and the itchy spots with some strong hydrocortisone and lots of lotion.
Good luck!October 29, 2012 at 2:03 pm #57209Catherine PooleKeymaster
Thanks for your reply to Pati. This is very hopeful and you both are college professors!!
I hope the drug continues to help you keep your disease at bay and please stay in touch. We are never exclusive here! Best wishes to you ……..November 3, 2012 at 8:29 pm #57210rbruceParticipant
Hey all, just wanted to chime in with my anti-PD1 story. Sometimes I find myself staying off the forum in an attempt to “forget” about my disease and live life to the best of my ability. I’ve struggled with this as I know that many need to hear my news. So here I am.
Diagnosed Stage IV in March 2011 with numerous lung mets, rib mets, and lymph node tumor (braf negative, Nras q61 positive) After debilitating biochemo and then a trial for PI3K, my tumors continued to grow. I lost 40 lbs and felt like hell doing biochemo and didn’t think I was going to make it. After much research I found info on Anti-Pd1, especially the results BMS was beginning to publish. I heard that UCSF was going to start a trial and during the delays I did the PI3k trial to feel like I was doing some sort of treatment. PI3K, no hlep for me, and the day I got my scans showing growth I was accepted into Mercks trial. I began Merck Anti-PD1 trial at UCSF in March 2012. At 12 week scans I had over 30% reduction in lung mets. At 24 week scans my lung mets continued to about a 50% total reduction and my bone mets had a marked decrease in suv according to the Pet/ct. The 2 cm tumor in my lymph node decreased to pea size. I get my 36 week Pet/Ct on November 19th and results on the 21st.
Now, on to side effects. I have a constant rash on my upper chest and neck, kind of like acne, but does not itch. I have frequent aches and pains in my bones, joints and muscles. Stiff neck and upper back primarily. The location of my rib mets generate both a dull ache type pain as well as sharp, shooting pain at times. Fatigue is also an issue which can come on quickly and I just want to nap, but goes away fairly quickly as well. One of my study Docs said that they are hearing of similar joint, muscle and bone pain and it seems to eminate from old injuries or weak spots. Every now and then (usually before scans, ie., scanxiety) I think the pain is greater until my wife reminds me that I say the same thing a couple of weeks before scans.
That said, I firmly believe that Anti-PD1 saved my life while providing a quality of life that allows me to do most of what I want, excepting the rigid every 2 week Dr and infusion schedule. When I freak out about the thought that maybe this will go the way of Zelboraf which seems to be short lived success without adding a secondary drug, I come across more research findings that point to the successes of the immune system approach of Anti-Pd1 and my attitude is buoyed for another few weeks. Dr. Daud told me early on that “we don’t really know what will work for you”. But today, we know from BMS’s early trials that if your tumor expresses the PD ligand, that Anti-Pd1 may be just the ticket, much like targeted therapies for Braf mutations are showing great promise. Now, knowing that BMS and Merck are both moving directly from Phase I to Phase III trials, proves the potential of this treatment. I tell anyone who will listen that we are finally on the right track to be able to treat Stage 4 melanoma warriors, confidence that I, and my Dr’s, did not have at my diagnosis. I thank God everyday. I believe in miracles, I am blessed beyond what I deserve. Robert
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