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February 21, 2013 at 1:17 am #21038
Since I’m feeling a lot better, I felt like I’d just post a little on my current situation. I was really suffering from what I’m pretty sure was a combination of radiation-induced damage to my lungs and heart (mainly pulmonitis or lung-scarring and bouts of very rapid heart rate every day or two, all of which meant I was getting weaker from lack of oxygen delivery) plus a nasty course of Ipi plus Sylatron (pegylated interferon alpha). Because of my accelerating weakness, I was taken off the Ipi+Sylatron after 3 doses and put on high dose steroids 2 weeks ago. I am now about 85% back to feeling normal, and enjoying life again, and believe me, it feels wonderful! We just came back from 2 days in New York City, visiting my very pregnant 41 year old daughter, due in 3 weeks, and we’re all excited.
Of course, I know my oncologist is worried about the effects of the steroids on my immune system and possibly encouraging tumor growth down the line, but my quality of life was really getting lousy, sleeping 14-16 hours a day and not wanting to do anything.
Also, another oncologist from the UK suggested to me that steroids after Ipi+interferon doesn’t necessarily have to lead to accelerated tumor growth, and he’s seen a continuing Ipi response in some of his patients. Any other comments on that?
Best to all,
P.S.February 21, 2013 at 2:35 am #59272PhillyRedParticipant
Thanks for posting your update. Glad you are feeling so much better!
Carpe diem!February 21, 2013 at 12:57 pm #59273Catherine PooleKeymaster
So happy to hear the quality is coming back to your life. And I’m excited about your new grandchild too! It is truly an amazing experience to have a grandbaby to hold. Pretty soon when the below zero nights subside we can start on our gardens. I’m excited for that too!February 21, 2013 at 2:19 pm #59274buffcodyParticipant
Very good news. Welcome back to the Forum. It sure must be good for you to feel 85% better even if the starting point was low ebb. Hope things continue to improve.
FrankFebruary 21, 2013 at 7:27 pm #59275patiParticipant
At last news from you!!!!!!!! You will soon be a granddad and that is to be celebrated, shall the baby bring lots of life in, shall you enjoy each second and shall your immune system hold you strong. Love, PatiFebruary 23, 2013 at 8:55 pm #59276StevenParticipant Hi Jonathan
So glad you posted an update. You give so many of us strength emotionally and intellectually. I’m glad you are feeling better.
StevenFebruary 24, 2013 at 1:50 am #59277WITomParticipant
I’m not sure if you are asking only about ipi + interferon combo with use of steroids but I was on ipi only (10 mg) and ended up on steroids for a severe case of colitis. My last ipi infusion was late Dec 11′ and started on steroids in mid Jan 12′ till early March 12′ ~ 6-7 weeks. I don’t remember the dosages but I think it was relatively high as it was a bad case of colitis. The ipi so far has worked for me as I became NED after the steroids use since Oct of12′.
You have been an great inspiration and so helpful to me and my wife for the past couple of years – happy to hear you are feeling better and pray for your continued improvement!
TomFebruary 24, 2013 at 1:51 pm #59278
Thanks, everyone – much appreciated (and it is very good to feel pretty normal). Nothing like a little oxygen deprivation to make you feel terrible.
Tom, I was particularly interested in your case – sounds very hopeful (for you and me).
JonathanFebruary 25, 2013 at 10:55 am #59279lak1Participant
So glad you feel better- looking back when I was finished ipi I spent a long time sleeping- I used to set the alarm clock so I would be awake for hubby coming home from work!
LesleyFebruary 25, 2013 at 2:35 pm #59280AnonymousGuest
Glad to see you up and about. What a fighter!
I’m curious about your latest treatment (IPI + Interferon). How are they sequenced and what was your rationale for doing it? Is it a trial? Sorry about the side effects, interferon can be rough by itself!
And, of course, congrats on the new up coming grand baby!
JeffFebruary 25, 2013 at 3:36 pm #59281
The Ipi+Sylatron (pegylated interferon) combo is a rather off-beat treatment that my oncologist proposed because I was showing some progression but already had had some response to an earlier course of Ipi. What he really wanted to put me on was either the Merck or BMS anti-PD1, but I am disqualified from those because I participated in the (unsuccessful, as far as I know) Cureteck version of anti-PD1, CT-011 (I’d still be interested if ANYONE who did that trial got a decent response – so far, no one has responded).
There is actually a small ongoing trial at Moffett (Tampa) using Ipi+Sylatron, so it’s not without precedent, and Dr. Weber there said it was “hopeful, but still too early to tell….” The logic would seem to be that the Sylatron might act as an immune “booster” for the Ipi, and since I’d had a decent response to Ipi going back 2 years, I might be a beneficiary. My next scheduled scans are on March 5, so we’ll see then….
I can tell you the treatment was very rough for me (well, I am 72) – they took me off it after first reducing the Sylatron dose by half, and then stopping everything after the 3rd Ipi infusion. I am convinced it exacerbated problems in my lungs and heart (I’d had stereotactic radiation last July right next to my lungs) so that there was already some “condensation” or scarring in my lung and bouts of tachycardia came on rather quickly as well – atrial fibrillations. I was getting quite weak because of the oxygen deprivation once on the combo, and also coughing up mucous – passed out once in a museum, etc…But the 40 mg dose of prednisone for the past 3 weeks has really brought me back.
Hope this helps.
JonathanFebruary 25, 2013 at 4:55 pm #59282AnonymousGuest
Yes it does Jonathan and the combination makes sense. It’s wonderful now that there are combinations that can be tried if you and your onc are willing.
It really pisses me off that your use of a failed PD1 trial drug years ago is STLL a basis to exclude you from a Merk/BMS PD1 trial. Same goes for brain mets. Shoot, now people with prior IPI can qualify.
Well, if Merk and BMS can get their stuff approved quickly, then the “issue” goes away.
Hang in there and 72 is NOT old
JeffFebruary 25, 2013 at 9:15 pm #59283
About the continuing CT-011 disqualification – TELL ME ABOUT IT!!! My oncologist appealed it to no avail – he thought it wouldn’t “count.” The most frustrating thing that’s ever happened to me.February 25, 2013 at 11:23 pm #59284Catherine PooleKeymaster Jonathan,
I think they (Merck and BMS) would only allow you on their trials IF Curetech disavowed their CT011. And what drugmaker will do that? It frustrates me too!
Have you been tested for NRAS? The MEK by Novartis has been helping those Braf neg folks and have you been restested on the BRAF? (probably has been a while) By the Cobas or GSK test, they are the most sensitive. I would highly recommend you look at those avenues.February 26, 2013 at 12:04 am #59285
Thanks Catherine, I’ll discuss those with my onco on March 5.
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