Update and Question re: Ipi and intransit mets

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4/23/2014 10:25am
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Replies: 11

Hi friends!

Just wanted to give you a quick update in what's going on with me.  I'm stage 3c with intransit mets near my SNB scar.  I've now had all 4 Ipi infusions and tollerated them reasonably  well (though toward the end they were starting to kick my butt and so I was on a short steroid course).  

Three weeks ago I had my first post-ipi scan, and it showed that I have no new mets.  So I  have stable disease.  However, in the last 3 weeks I think I've had more intransit mets popup.  It's tough to say because these new ones are still small, but they itch like crazy.  

So here's my question:  How long does it take for ipi to kick in?  I'm 5 weeks out from my last infusion.  Shouldn't I be seeing my intransits melt away by now if it was working?  

Thanks for sharing your insight and experiences!

Blessings

Julie

2009 Stage 3a, primary on hand, WLE & SNB (twice), LND, HD-INF, GM-CSF

2014 Stage 3c imultiple ntransit mets near SNB and WLE scar. 

Anonymous - (4/23/2014 - 12:56pm)

Hi,

You should see your doctor. If these are new the disease is not stable. I'd make an appointment with him or her right away.

My Mom had 18 lesions on her head. Some were the size of peas, kidney beans and larger. 3 days after getting ipi they started to tingle. The next 2 weeks they got hard. By 1 and 1/2 months after starring ipi 90%+ were gone.

The only lesions that grew or appeared after ipi were in her brain. Everything else is "gone" or smaller except the brain mets. She had 8 treated 4 days before ipi and 16 last week with gamma knife. - No memory or other issues reported.

Every person is different and it could take some time to see how well ipi has worked. New lesions are at this time is not a great sign that things are under control, but it could occur in some individuals who respond to ipi. Talk to your doctor.

Anonymous - (4/23/2014 - 1:00pm)

Hi Julie,

I have NO experience with IPI but I have been taking Braf for over 1 yr. My tumors melted away within the 1st month.

Have you been tested for Braf. If so, has your doctor talked to you about taking BRAf, if you do not respond to IPI.

I read your other posts and it sounds like you have a very experienced doctor, as you say "Rock Star" doc, what is his opinon??? Does he have a Plan B for you?

Good luck, hope you do get a response for IPI.Hand in there!

MaryBeth

Hi Mary Beth & Anon.

Thanks for sharing your experience.

Yes, Rock Star Doc has a Plan B: I'm on the PD1 expanded access list. But I'd rather not have to do another treatment if I don't have to.  Also my intransits are really small: one is pea sized, the rest are rice size.  Yes, I know they can grow fast, but they haven't.  Maybe Ipi kept them small?  If Ipi is working, I want to let it work, but if it isn't then I'm all for moving on and going forward.

Really I just want my old life back (doing anthropological research and training in Asia), and I'm trying to adjust myself accordingly.  It's just the waiting and watching that's getting to me.

Julie

Anonymous - (4/23/2014 - 5:05pm)

Hi Julie,

 

I am new this forum. My husband is stage and failed ipi. We have to talk to his doc  now to see what is the next treatment.

We read alot about Merck pd1 EAP. We understand that you have to have failed IPI first beforeyou get into EAP.

Also I have read that if you are BRAF positive that you need to do a BRAF treatment BEFORE you can get into the EAP.  Did your Rock Star doc mention anything to you about that? Are you BRAF Positive? Does anyone else know about that BRAF rule who is reading this post.

You mentioned that "I'm on the PD1 expanded access list".  Are you on the waiting list because you are not sure that IPI could be working for you & you need more time to access IPI or are there just so many people wanting to get  into the EAP.

Thanks for helping me understand the requirement/criteria for EAP.

Hi Anon,

I can't say I really know about how the EAP works- it's best to talk with the drs- I'll pass along what I heard.

I know you have to have failed ipi.  This is for sure.  But there seems to be wiggle room in the "Failing BRAF" language as Rock Star Doc has said that I would not need to have failed a BRAF drug to get on the PD1 EAP.  I think this is because it wouldn't make any sense for me to take a BRAF drug, as my tumor burden is very small (I only have intransit mets).

This is how I understand it, anyway.  I may be wrong. Best to talk with your dr.

Julie

Anonymous - (4/23/2014 - 7:29pm)

Julie,

One more question if you have time to answer it:

You mentioned that "I'm on the PD1 expanded access list".  Are you on the waiting list because you are not sure that IPI could be working for you & you need more time to access IPI or are there just so many people wanting to get  into the EAP.

I am trying to get a sense as to if there are going to be LONG waiting lists for EAP like there were in some PD1 clinical trials.My husband cannot wait.

Thanks again for the help

Hi anon,

 

I really don't know if there is a list as such, or what the wait time is.  As I think back over the apt I had with Rock Star doc, I'll I really remember him saying was that if I failed Ipi, pd1 could be a back up and that I would qualify.

my suggestion is that you talk with a clinic that has been a part of the pd1 trial and see about getting your husband in.

sorry I can't be more help,

JulieJulie

Based on what I've read, many patients see results (or not) via scans between weeks 16-24 from the start of ipi treatment.  Of course, there are patients that see results earlier and later.

Thank you Mat this is very helpful. I'm sure my doc said something like this, but I didn't bring a scribe (friend) to my last appointment  and couldn't remember the details.

I'm just now going into the 16th week, so I should keep watching.  So good to know and maybe I will be a responder.

Julie

 

Julie, there have been a few reports of Ipi showing results in about a month.  There have also been reports of it taking a year to start shjowing results.  Anything in between is possible.  I would, if not showing positive results after 16 weeks, be looking seriously at a Plan B.  PD-1 is a good Plan B.  I would also want the Oncologist to confirm if the new locations are indeed melanoma Mets.

I'm me, not a statistic. Praying to not be one for years yet.

Thanks Jerry for your reply.  Are you thinking 16 weeks from the last infusion?  Or 16 weeks from first infusion?   

I am most definately looking at a Plan B. Just in the last week I've had 2 more pop up.  It's true I'm not completely sure that they're intransits (and won't be sure without a biopsy on them), but they're right next to my SNB scar, and are all in the same general area on the inside of my upper arm (primary on hand). 

Thanks for your help!

Julie