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September 17, 2012 at 9:39 pm #20632
Ok – I know this has been discussed some before. I am set Oct 4th to have surgery done on my small intestine to remove a section that has been showing up on my scans since May as significantly inflammed bowel. I tried Zelboraf since May. July scans showed some shrinkage but Sept scans showed it ‘s back to the same size as it was in May.
Was given an option to start Ipi and see what happens (since not having many symptoms) but I prefer to just have it cut out! Can anyone give some details on what it’s like, what to expect, etc?
ErinSeptember 18, 2012 at 11:54 am #56528
I hope someone else can fill you in on the details of the surgery and hopefully your doctor has been communicating openly about what to expect. I know patients who have gone through this and they have recovered quickly. Starting IPI might be a good idea to rev up your immune system? Or, be looking at a PD1 trial if you can find one. Let us know how you are doing.September 18, 2012 at 3:28 pm #56529 Hi Catherine – Thanks for the note. Yeah not looking forward to this type of surgery but tired of the wait and see. Just want it out! So hopefully there are some folks that can lend some guidance on the surgery. and I’m going to ask the nurse at Sloan about anti-pd1 trials. I don’t think they have any going on? Not sure where else there are any open right now. Never a dull moment!September 18, 2012 at 4:41 pm #56530 Yes, they do have the trials there, I would inquire first before doing the IPI since it can preclude you. There will be some opening up across the country as the year progresses. But there are very few slots, so it is good to get on a list. Dr. Wolchok’s team will have the agent.September 18, 2012 at 4:58 pm #56531 Thanks. I know my onc had mentioned before Sloan had a anti-pd1 trial but in our last meeting he never brought it up. I did leave a message with his nurse. Hopefully I’ll hear something back before I am supposed to start Ipi on Friday. I suppose I could call Dr W’s office as well.
I joked with them that if they want to get the FDA to approve this drug just try and get me in the trial
I failed getting in the ipi trial and couldn’t get in the braf trial last year because by the time I was scanned again all my nodules in my lungs disappeared! and within 6-9 months the drugs were approved! I’m 2 for 2 lol!September 19, 2012 at 11:52 am #56532 Well then we need you to help us get the PD1 approved! Yes, I would be a squeaky wheel and try to find out about slots. There are so few and you are already a patient there. Hope it works out. In the meantime, I hope you will be able to communicate with the person who has also had similar surgery at Sloan.September 19, 2012 at 2:21 pm #56533 I asked Sloan about getting in the trial. I was told that yes there are pd1 trials and we can use them if needed in the future. I would still be eligible even if I started ipi. They didn’t think i’d be able to start that type of trial until well after having surgery so it would be best to just go ahead and start ipi now and look at trials later.
I’m not sure how quickly anti-pd1 can work? I know that when talking with my surgeon given that I don’t really have any symptoms right now she stated I could possibly wait on surgery and see if another tx would work. So many things to think about! On one had I just want the spot cut out (although I’ve asked them if maybe this could be chron’s? or something else?).
and thanks again for the contact – hopefully they have some words of wisdom!September 19, 2012 at 7:24 pm #56534AnonymousGuest
Here is part of a posting I did previously:
“Rachel was accepted and 1 week away from a special BMS trial at Memorial Sloan Kettering (MSK) where IPI and BMS PD1 were combined. There were two sections to that trial. The first gave the PD1 along with the IPI treatment (no prior IPI allowed, period). The second (which Rachel was going to be in) specified a prior IPI “window” of 4-12 weeks from the last IPI infusion before first PD1 infusion. I believe this second version would have allowed the IPI to be a reinduction. “
From your post it would seem that MSK still has slots for these open.
As IPI can give some people intense intestinal problems, I have to say it concerns me that your onc seems to feel its ok to do the surgery and IPI at the same time. I would think you would have to wait at least a couple of months after the surgery to allow proper healing and inflamation reduction before getting the IPI. However, I’m not a doctor. Please call MSK and get their opinion.
But I have to tell you, my gut (no pun intended) tells me to go after the systemic treatments first, especially if you can get into a combined IPI/PD1 trial. With Rachel, we were always behind the spread of the disease systemically and could never catch up. I was really gunning to get her into the IPI/PD1 because, again, my gut told me this could be a powerful combination and, indeed, during our screening visits with them, I got the distinct impression from MSK that it was. They, of course, had to be careful about what they said since all data is proprietary to BMS. Here is the trial we were scheduled for:
Specifically cohort 7, which was every 2 weeks, not every week as stated in the link. You would be elligble for cohorts 1-5, with the higher numbers geting the higher doses of each. It’s also my understanding that PD1 acts quicker than IPI.
I hope this helps and
JeffSeptember 20, 2012 at 12:33 pm #56535CeceliaParticipant
Margaret had a large tumour that was blocking her bowel removed by surgery, but for some reason the surgeon opted to leave in a smaller tumour that was palpable in the bowel some distance from the first. Margaret had to wait two months after the surgery before anyone would consider Ipi, but when she did eventually start, the Ipi resolved the second tumour without surgery. However, as Jeff mentioned, Ipi was not considered until the surgical incision had had a long time to mend.September 20, 2012 at 2:25 pm #56536 Cecelia and Jeff –
Thanks for your response. I talked with MSK about the PD1 trial and their statement was that is available as a future option but we wouldn’t be able to start that until way after surgery so Ipi is the best thing to start with right now. I’ll ask again about if we should be doing that so soon with bowel surgery. I thought about that too when they kept stressing how much this can attack the bowel.
They just leave this a confusing mess! That’s for sure. In the meantime, I did reach out to Yale that has the same trial going on. I’m sending them info to see if I might be eligible.
I appreciate your ‘gut’ thoughts. I’ve been so torn between systematic treatment or surgery. Honestly I’ve only had 1 bad day with horrible stomach cramps. Unfortunately that was the day before my last CT scan. So of course then I was like ‘cut this out of me!’. But since getting off Zelboraf I actually feel much better. No stomach cramps, diarrhea, etc. Never a dull moment in the world of Melanoma, right?
Stay tuned folks!
I really do appreciate all the feedback.
ErinSeptember 25, 2012 at 1:47 am #56537Shirley ZParticipant
I’m really sorry to hear you are going through this. You have an amazing attitude and your strength through all of this has been incredible.
I’ll be praying for you that your surgery goes well.
How was your trip? I hope you throughly enjoyed yourself.
Shirley ZSeptember 26, 2012 at 2:16 am #56538
Thanks so much for your note. Yeah… no fun to be going thru but what can we do right? Cut it out and fight on!
Getting my first dose of Ipi tomorrow.
The trip was AWESOME! but exhausting. Maybe that is partly why Z stopped working? ok that’s not really true… I’ll keep you guys posted on surgery. That goes on Oct 4th. ugh! no fun at all.
ErinSeptember 27, 2012 at 4:44 am #56539brenParticipant
My 50-year-old sister also had several inches removed from her small intestion when lesions were found there. She recovered very well with no further issues there. She also started on ipi for several months, was pretty stable until the lesions were found in the intestine, and she is now on Zelboraf.
I hope that your surgery goes as well as her’s and good luck to you and your family.
BrendaSeptember 27, 2012 at 5:15 am #56540msue5Participant
You and I are having surgery on the same day. Mine will be to remove an enlarged lymph node between the aorta and pulmonary artery which the Dr’s say is almost certainly Melanoma and will move me to stage 4(distant metastisis). I will be thinking good thoughts about you that day and you can do the same for me and maybe we will both have good results! Good Luck and I will be praying for you.
Mary SueOctober 2, 2012 at 4:37 pm #56541
Brenda and Mary Sue –
Thanks for the notes back. Mary Sue sorry to hear you’re also having surgery the same day! No fun at all. How invasive will that be? I hope recovery goes well for you!
Brenda – Hope your sister is doing well on Zelboraf. Glad to hear she recovered rather quickly from the intestine surgery. Not looking forward to it – but tired of the watch and wait to see if things get better. If there is an opportunity to cut it out, let’s do it, right?
Thoughts and prayers for you guys!
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