Ipi Success Stories and/or Thoughts

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7/31/2010 12:25pm
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Replies: 16

Hello Friends,

Im serioulsy considering Ipi over BARF and was looking for Ipi success stories and or anyt thoughts or comments on Ipi. Thanks, love, Sharon in Reno, Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

Anonymous - (7/31/2010 - 1:54pm)

Hi Sharon,

 

Just curious, has your doctor recommended one treatment over the other treatment. Know that IPI is available it seems like more people are faced with your decision: BRAF or IPI!!!

What are your views???.When do you have to make your decision by???

Good Luck with your decision.

No, doc hasn't said do one or the other. Im leaning toward Ipi cuz of the brain barrier thing and it has a 27% complete response rate in killing melanoma and it will be  local it here in Reno.  First he scheduled the gamet of scans for the next 2 wks PET/CT and an Ultra sound for my left arm which is still not healing right from lung surgery. So I'm guessing I have anohter 3 wks tomake up my mind.  

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

Anonymous - (7/31/2010 - 2:10pm)

I've not had experience with either drug. But Ipi has been known to cross the brain barrier while B-raf does not. Since you've had brain mets you might want to consider that.

Anonymous - (7/31/2010 - 3:00pm)

Sharon that is a difficult decision which I also need to make???

I am interested in knowing in what are the side effects to IPI and what are the side effect sto BRAF???

Can anyone who has experience with these 2drugs please comment?

Thanks

Hi Sharon,

I'm in week 78 of the ipi "brain" trial.  The ipi is the first treatment offered when I was dx'd at Stage IV.  my blog has the details.

http://www.jerrysullivancapecod.com

 

Jerry from Cape Cod

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

Hi Sharon

Thanks for posing this question. I too will be most curious as to opinions. I had hoped to do B-RAF trial here about two months ago but proved to be negative.  I am now on temodar (stage IV drug) first round and if I show progression will be going on to the compassionate ipi trial, considering the continued growth of my tumors probably heading in that direction. I thought I would try B-RAF first since 'ipi' could be my back-up plan...but that didn't work out.  Anyways the problem with the brain barrier would have made me re-think if I was going forward now with B-RAF.

Unfortunately, the timing of the new bulletin board with not all on board yet could slow down the responses.  Val

Live Laugh Love
Nothing is worth more than this day!

Anonymous - (7/31/2010 - 5:23pm)

Hi Jerry,

 

Please comment onthe side effects that you have had.  Also, what did you do to combat the side effects>

 

Thanks

auto immune side effects

Rash.  Mild to moderate.  In the first 24 weeks the rash required heavier meds, but now I just use OTC Benedryl.

Thyroid:  function restored with meds.

Testosterone: function restored with meds.

Hair turned white quickly (beard in 10 days).  Grecian Formula

I have not had any serious GI system problems that others have reported.

Jerry from Cape Cod

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

 Sharon, here is why I like the Ipi option.  

1. Just as you said, it has been known to cross the blood brain barrier.

2. Unlike the BRAF trials which tend to show immediate responses which are short lasting,(if you research it enough, you will see that there was a BRAF inhibitor called BAY something that never made it to approval because the overall survival didn't really add up.  IPI has a durable response. IPI has also been a drug I always wanted to get a hold of, So far the only long term survivor I have seen w/the BRAF inhibitors is one person.  She posts here from time to time.  She was in the Bay trial.  Meanwhile a lot of my favorite people (Amy Busby for example) have not had the results I was hoping for.  I like you too, and if it were me, I would definitely go for IPI.  If it doesn't work though, don't lose hope, I survived without it.  Unfortunately in order to qualify for compassionate use, you need to have a tumor (at least when I was thinking about it).  Whichever you choose, God Bless and keep on fighting.

 

Insert Generic Inspirational Motto Here

Thank you for verifing that Ipi can cross the brain barrier. I recently finished WBR. I leave for Knoxville for my third Ipi treatment tomorrow. I havn't really had no side effects other than a slight rash but I assume that will change next week.

Just wondering which one did you go with?  Ipi or BRAF.  I'm on BRAF currently but might be switching to Ipi after my next CT scans.  I think my tumors are growing again.  Finish strong.

Anonymous - (9/22/2010 - 11:12am)

Unfortunately Sharon did not get to go into either. Her tumors had spread and she is currently in hospice.

I will start the Braf trial shortly, hopefully, when all of the paperwork goes through. 

I am hoping for a reduction in tumor size or hopefully full elimination.  Planning on being one of the lucky ones who has a full remission.

If not, it looks like Ipi and its side effects is a fall back plan.  Hopefully I can get compassionate use at that time.

Bill

Bill from Illinois
Stage IV Spine Mets, brain mets ans subq mets.
starting whole brain radiation on 11/8 and then compassionate use IPI ASAP.

Ipi worked for me.  I had started it in Aug 2008 and had my last maintenance dose in Feb 2009.  Started seeing shrinkage with first CT in Nov 2008.  By March 2009, almost all evidence of Stage IV disease was gone.  I had very mild rash, nothing else until I had a rare (like I truly am the only patient that experienced this according to the trial monitor) eye issues which were controlled with steroids.  Ipi continued to shrink tumor while I was on steroids.  As with anything - your results may vary.  Best of luck in this difficult decision.

Luke 1:37

I'm just really happy to hear from you!!  I'm glad you are still fighting and making decisions.  Good luck finding the right treatment for you.  Have a great week!!  Beth

Melanoma tends to cut into your looks!!

 

Unfortunately, this is an old thread (7/31/2010) which somehow became active again...