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October 2, 2013 at 3:47 pm #60670BNP68Participant
Thanks for the update Johnathan. Your scans may be an A- but I give you an A+ as well. Enjoy your vacation. You’ve earned it.
BrianOctober 5, 2013 at 9:44 pm #60671StevenParticipant
My wife asked me on Monday how you were, and the next day you posted!
Thank you for the update. You are a source of inspiration for so many of us.
Best wishes on your treatment.
StevenOctober 11, 2013 at 3:35 am #60672
Thanks Steven, and the rest of you who have been keeping up with my journey. I’ve also been following some of the otHer threads but haven’t commented often, for which I have been remiss. I’m sorry about that, and hope to do better.
I am pleased to report that at least one person I know of, who is probably going to enTer this trial in Nashville, has read this entire thread and should be more informed as to what to expect as a result. That is what I’d hoped might happen. We must support one another and also learn from each
Just a note on my current situation – my recurring anemia apparently is due to a telescoping effect in my small intestine, and although we were scared about it, my oncologist said it ‘didn’t worry’ him – those sometimes bleed and then stop, start again, etc., so the idea is to treat as necessary (iron infusions, transfusions, monitoring hemoglobin fairly frequently, etc). I may be getting stronger already – we’ll see. A bit of unpleasant news in this past scan was also confirmed – I’ve got a very small new brain tumor (3×4 mm – I had 2 three years ago, successfully gamma-knifed) that will be zapped in the next couple of weeks at Yale by Dr. Veronica Chang (see her webinar) – not a big deal, according to all involved. We all know chemo doesn’t cross the blood-brain barrier… I feel like an old veteran in all this business. When I tell people I’ve been stage 4 with melanoma for 7 years (and first diagnosed in 1996), most are very surprised. But hopefully this is becoming the “new normal”, where this disease becomes more manageable, and more of a chronic, rather than an acute, condition.
JonathanOctober 11, 2013 at 1:46 pm #60673Celeste MorrisParticipant
Oh, Jonathan! I am sorry about your brain blip! That is never fun, though I know you will have a zap and move on! Glad to know your doc was positive about what you are showing elsewise. I’m glad your “story” here is helping others. I always knew it would. You have long set an example for all of us…in EVERY way! Yours, cOctober 11, 2013 at 3:14 pm #60674jamesaParticipant Hi Jonathan,
You are such a trooper always trying to help others. You are a remarkable man.
I am sorry to hear about your brain met. By you getting a brain met, does that mean that your treatment drug does NOT cross the brain barrier?
I have read on many posts that if a person gets a brain met while on a trial, that is considered “progressive disease” and person is kicked off the trial. I think that it is wonderful that you can stay of the trial even getting a new brain met.
I recently read that someone on the Merck pd-1 trial got a small met and because the person is having Gamma Knife they were told by Merck that they would be kicked off the trial. The person was told that radiation of any kind is not allowed while on the Merck trial. It appears that the drug is keeping this person’s body cancer free but not the brain. It does not seem fair that people cannot get brain mets zapped and still stay on the Merck trial. Has anyone else heard about this issue with Merck Pd1 trial?
Jonathan, stay strong and you and Francois are in my prayers.
JamesOctober 11, 2013 at 3:56 pm #60675
You know, I can only tell you my own experience – if what you say is true, that really sucks for the Merck patients, because this sort of thing does happen. Francoise just found a thread on MRF reflecting what you said – a patient on the Merck trial developed a brain met and was told if they zapped it, that would mean leaving the trial – they could however continue the trial without treatment – nasty choice. That seems to be the case for one Merck phase I trial at least, she’s telling me. It says prior treated brain mets are allowable, but not active CNS disease. That really seems unfair and also lousy science – why should concentrated radiotherapy in a section of the brain affect drug response elsewhere??? Seems a no-brainer, if you’ll pardon me…
In my own history, I developed the first of 2 brain mets around 20 weeks after starting Ipi (3 years ago), and was simply given the choice of zapping or waiting to see if Ipi would take care of them (that does sometimes happen, since the drug doesn’t cross the blood/brain barrier but the newly educated T-cells can cross and attack the tumor sometimes). I chose to get it zapped (and also the second, which appeared a month later), and my oncologist thought I’d done the safe thing. Of course, the infusions had ended by then…So I got a good response to Ipi for about 18 months, but the brain mets did develop during that period – and this is not too unusual, so I really feel for Merck patients in that dilemma. It seems quite unnecessary.
And just to say it directly, my understanding is that essentially no melanoma drugs (chemo or immunotherapy) cross the blood-brain barrier directly – but the immunological response from Ipi (and one would think anti-PD1) may cause a secondary response in the CNS.
Scary as being told you’ve got a tumor in your brain is, if it’s small (Dr. Chang just described mine as a “spot”, which sounds a lot more benign than a tumor), the gamma knife treatment is remarkably effective and any side effects are over within a day or two. And there has been nary a mention of getting kicked off this trial as a result – there aren’t many exclusions at all.
JonathanOctober 11, 2013 at 6:34 pm #60676AnonymousGuest
James and Jonathan:
Here’s my bit of info. When trying to get Rachel into the BMS IPI/PD-1 combo May of last year at MSK we were told that if she developed a brain met during treatment they were ethically bound to continue the treatment. I asked specifically about raditation of brain mets and this did not seem to be an issue as the treatment would not be systemic, just “sharp-shooting” in a well isolated organ.
That was then and a BMS trial. It was also a phase 1 trial at the time where response rate was a secondary measure with dosage development, pharmakinetics and tolerability the primary measures.
I’m sorry you had the met though Jonathan. Yeah, just a “spot” maybe but it’s still gotta be disappointing. I’m glad they’re letting you zap it and continue the trial which is consistent with what we were told at Sarah Cannon for the ADC.
Time for some sharp-shooting trooper Jon.
JeffOctober 12, 2013 at 11:06 am #60677lak1Participant
Thinking of you Jonathan.
LesleyOctober 12, 2013 at 11:51 pm #60678tasjacquesParticipant
So sorry to hear about the brain mets, but your spirits are high and that sometimes is half the battle.
And it is an interesting debate the one of PD1 trial from Merck and BMS allowing or not to continue while having develop brain mets. Scary to think that you could be boot out of something that is helping you so much.
Wish you all the very best, and thank you for sharing so much information about this new treatment, it helps to know how the patients are doing.
I am happy that it is working for you.
EleniseOctober 30, 2013 at 4:25 am #60679zephyr66Participant
So happy to hear you are not progressing on the drug and are managing side effects. Your account is inspiring and will help others who will undoubtedly take the same drug after you. I hope things keep getting better and better!!
SylviaOctober 30, 2013 at 8:12 pm #60680
I’m doing o.k. Last week I had the latest brain zap (gamma knife) with no issues – a 3 hour outpatient deal, and I drove home the next day. One controversy – at Yale, they do the “barbaric” 4 screws in the cranium to secure the “halo” for stability, vs the “mask’ approach. I asked Dr. Chang about that and she said, with 17 degrees of freedom etc., they prefer the assured stabiity of the screws. She also says people get uncomfortable with the mask on for a long time….She said the stability issue is particularly critical for tumors in the neck and inner cranium, but i probably could have gotten by with the mask for my little 3×4 mm ‘spot.’ Anyway, I was glad when they took the Black and Decker out to remove the screws…
On the treatment side of things, the anemia is still there, but stable, so theyre giving me 2 more shots of heme iron to see if my hemoglobin will go back up – currently 9.7, so easily tired. That’s about it – peripheral neuropathy seems to be stable or a little improved.
JonathanNovember 5, 2013 at 3:10 am #60681dkmcParticipant
Jonathan you are an inspiration to us all. Keep us posted and know we are all thinking about you. You were one of the first to welcome Don into the IPI response club…14 months was the longest he remained NED since diagnosis. After melanoma’s return, after surgery, he just finished his second round of IPI and we are hoping for another durable response. It is good to know there are other treatments out there being developed. Thank you for blazing the path for new treatments. Again THANK YOU. KarenNovember 5, 2013 at 3:25 am #60682 Hi Karen,
Hope Don gets a good response this time around. It may not be clear, since Ipi acts in such a weird way – another one of us is clearly getting immune sorts of responses a long time after the effect was deemed to have worn off. I’m really still very big on anti-PD1 and anti-PDL-1, particularly as follow-ups to Ipi, if you can find a trial where that’s allowed after Ipi. The drug I’m on is still a ways from being available widely, and a great deal about its long term efficacy is simply not known, since I think the longest anyone has been on it is about 90 weeks (I met such a person last week, and she’s doing very well).
JonathanNovember 6, 2013 at 12:15 am #60683jamesaParticipant
I was glad to see your post. How are you doing buddy?? Have you had your brain mets zapped??
I hope that you are feeling well and your cancer keeps shrinking.
Stay well, my friend.
JamesNovember 7, 2013 at 5:57 pm #60684
Yes, I did get the brain “spot” zapped 2 weeks ago (see post above – no prob). There will be a follow-up MRI scan in a couple of weeks. BTW, there has been no talk of this disqualifying me from this trial. Also, my anemia seems to be responding to the latest heme iron shots, which makes a big difference in lifestyle – not so breathless or tired. Life is a lot better right now.
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