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February 28, 2013 at 4:01 am #59286MothraeveParticipant
My husband has had a similar problem. He has been on the pd-1 trial for 12 weeks and has developed a slight case of pneumonia. He has had difficulty breathing although he doesn’t have any other symptoms beside that. He tried anti-biotics but they didn’t seem to help. He has just started prednisone and I am hoping that his breathing will be improve. He had to take a break on the treatment drug so his body could improve. His response to the the pd-1 after 12 weeks has been reviewed as stable with some nodes getting smaller and most staying the same. It stinks to have breathing problems…I feel so helpless in helping him. Thank you for sharing that you are feeling better from it…it helps…EveFebruary 28, 2013 at 3:30 pm #59287JonathanParticipant Hi Eve,
Yes, the prednisone (for me 40 mg per day) has made an enormous difference in breathing and oxygen delivery, no question about it. For a while there, I really felt totally out of it, and it became a quality of life issue. I’ll see scans next week, but I’d be very surprised if the lung “condensation” (scarring from the radiation) hasn’t almost totally disappeared, although I understand the responses are quite variable. Sooner treatment is better than later, and as you were probably told, the major side effect of anti-PD1 is pulmonitis (which I learned is a fancy word for pneumonia).
JonathanFebruary 28, 2013 at 7:06 pm #59288Catherine PooleKeymaster
Actually the side effect they worry about with PD1 is Pneumonitis (cats get shots to prevent it) and it is a type of pneumonia. Here is a good citation: http://www.mayoclinic.com/health/pneumonitis/DS00962
Hope it subsides!March 1, 2013 at 1:46 am #59289dkmcParticipant
So glad to hear from you Jonathan. I remember you had a great first response to ipi & then for the life of me I can not remember how reintroduction went? Or did you go with this “combo” for your reintroduction or is that when you went with anti PD1 trial? Your posts were a great source of hope & encouragement to us when Don first started his ipi. You sound better & soon a new grandchild…how wonderful. ENJOY!
KarenMarch 6, 2013 at 2:28 pm #59290JonathanParticipant
Just an update after my scans yesterday – even though they stopped the Ipi+Sylatron (interferon) a month ago (after the 3rd Ipi infusion – this was a reinduction course) because of my lung and heart business, my tumors are stable at this point, and my pneumonitis and atrial fibrillations are all diminishing or under control on the prednisone. So we’re celebrating (while waiting for my granddaughter to decide to make her debut in this world – she’s now 3 days overdue).
The other hopeful news is that, down the line, if/when things start growing again, my oncologist says there is an obvious course of treatment for me (in spite of my anti-PD1 disqualification), since I’ve gotten a decent response to Ipi every time I’ve had a cycle. I didn’t think to discuss how this might be covered by insurance – I had the impression that normally, only 2 cycles (initial and reinduction) are ever covered…We had a little discussion about pharma ethics that I won’t repeat here…The general point is that so many good drugs and options are clearly on the approval horizon that it’s a great shame (my words) that they aren’t more readily available to patients with no good choices left, who are willing to go for it.March 6, 2013 at 7:43 pm #59291AnonymousGuest
That’s great news Jonathan! Keep at it (and them).
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