Ipi working after first dose

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8/16/2014 6:27am
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Replies: 6

I have a question my husband had his first ipi treatment 2 weeks ago he is stage 4 melanoma braf neg mets in lung and trunk. He had his tumor harvested yesterday for the TIL trial  at moffitt. We were surprised at how much the tumors had shrunk as was the doctors, the original spot to harvest the tumor which was the largest was almost to small now to get a good sample they wanted 2 cm but said 1 cm would do so they also took another sample from his abdominal wall which had shrunk also has anyone else had this kind of reaction to ipi after first dose?

WITom - (8/16/2014 - 9:31am)

I am a stage 4 responder to iPi including lung/liver lesions - in my case my initial CT scan - I believe after only my 1st infusion - read  "significant interval improvement " with most of my many lesions. I am now NED nearly 2 yrs.

angtom - (8/16/2014 - 10:48am)

That is wonderful news and we can all use some good news once in a while. I do know everyone is different but just so happy at any glimmer of hope and congrats to you keep on fighting best wishes.

ecc26 - (8/16/2014 - 9:32am)

You should be THRILLED by this result, I'm rather jealous. I did Ipi last summer and failed miserably. by the end of the 4 doses and follow up scans I was in real trouble with my tumor burden. I am BRAF+ so they put me on the BRAF/MEK combo in December. Those began to fail in the spring (late April/early May). I've been enrolled in the Merk PD-1 EAP since June and just had my 4th dose last week. I'll have scans on Sept 2 to see where I am, but my response pattern with PD-1 sounds like your husbands response to Ipi. 

Congratulations! enjoy the good news and celebrate- you deserve some good, happy times

Best of luck as you continue 

angtom - (8/16/2014 - 10:50am)

Thank you so much  and I am sorry about your results with ipi but they have so many more trials now I read pd-1 was awesome I have been looking as back up plans. Good luck on your scans would love to hear how you do.

Patina - (8/16/2014 - 3:46pm)

Hi,

My Mom has had a similar experience with ipi/Yervoy.  She had tumors on her scalp and neck that were very visible.  Her tumors started to feel strange (pins & needles) about 4 days after her first infusion and they got very firm before the 2nd infusion.  Within 2 weeks the tumors started to shrink and by the time she was suppose to have her 3rd infusion you could not find the large tumor that had been on her neck and many on her head were much much smaller.  (The large lump on her neck was the size of the first joint of her big thumb before.)

Her first treatment was on December 12, 2013 and today the tumors on her scalp can't be found.  The blue "stains" where the tumors were (and very visible) are pretty much gone too.  I would estimate that the volume of tumors on her head was about 1/6 of a cup (maybe more) and there are just 3 dots of blue on her head now.  The lump on her neck comes and goes. Still much smaller, but they they think it is just inflammation now.

She did get colitis, which is something to watch for. Ask your doctor about modium and as strange as it sounds if he gets colitis and its in the lower bowel ask about a steroid enema. My Mom had colitis twice and was only able to have 3 infusions.  She went through month + of problems, including 3 hospital stays, and the enema worked 24 to 48 hours.

She was diagnosed at stage IV and today her doctors say she is headed toward a long term response.  Everyone is different, but it looks like it is having a positive effect with your husband.

Good luck.

angtom - (8/19/2014 - 1:49am)

So happy to hear about your mom I am always happy to hear good news from people it gives us hope. I have done research on the side effects to come and I have learned much from patient # 1 TJ who has gone through so much, I did not know about steroid enema thanks so much for that info will write that down to keep handy. I have already bought a cookbook for colitis just in case. Much luck to your mom and to you and again thank you so much for the encouragment and information.

good luck