MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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yoopergirl's picture
Replies 5
Last reply 4/3/2012 - 1:23pm

This week I am only taking 5 mg in the morning, and then next week nothing. I am feeling more muscle aches then normal and wondering if this is a side effects of tapering down. We are planning on leaving for 2 weeks after Easter and vacation in the Ozarks and sure don't want any side effects while we are gone, will keep in touch with my Oncologist if I need to. Just wondering how others do on getting off the steriods.

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imablack's picture
Replies 5
Last reply 4/2/2012 - 4:38pm

Today, I lost my brother to melanoma. He was diagnosed last February after spending four years in Iraq. He will be missed terribly but his death will help others. In a last unselfish act, he has donated his body to melanoma research. I miss you so much, Ricky. I love you.

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MeNDave's picture
Replies 4
Last reply 6/16/2014 - 3:12am

OK folks, quick question.  Will Dave's previous history of optic neuropathy and need for high dose steroids on IL-2 exclude him from the anti-pd1 trials?  He goes to the Hillman Cancer Center on the 12th to see about the MK-3475 trial.  His oncologist (God Bless him), although pushing Dave to do the IPI,  is also calling Memorial Sloan directly for him to see about their IPI/MDX-1106 combo (or any anti-pd1s).  Hopefully we'll hear back from him soon.

I just don't want to wait two weeks for an appointment, only to find out he won't qualify anyways.

As always, thank you....

 

Maria

Don't ever, EVER, give up!

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Anyone had a fall in platelets with IPI?

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/2/2012 - 7:06am
Replies by: jim Breitfeller
JimNewJersey's picture
Replies 1
Last reply 4/2/2012 - 5:13am
Replies by: aldakota22

So how will the rest of the weeks go. Are the effects cumulative, or is this it?

Jim

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So how will the rest of the weeks go. Are the effects cumulative, or is this it?

Jim

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Jeff's Mom's picture
Replies 5
Last reply 4/5/2012 - 10:26pm

It's been a tough two weeks - Jeff finished his final IL2 treatment on March 15th (did 19 bags total - it was brutal, but he was willing to endure anything to get a positive response).  We were waiting and waiting (scan was scheduled for April 11th) to see some improvement in his overall condition, but he just seemed to be spiraling downward.  He was so exhausted, nauseated and pale - it was getting scary.  He finally went to the hospital on Thursday  (the 29th) because he had a fever and we were worried about hepatitis (he looked jaundiced).  Doc didn't like the way he looked, so Jeff had an early scan.  Tumor progression in the liver - serious and fast progression...

He is now on Zelboraf.  He seems better, but he's been on it for just a few days (2 to be exact).  Can it work that fast?  

I am worried about what to do next.  What will we do if the Zelboraf stops working?  How much time will we have to get him into another treatment?  What are our options - ippi and anti-PD1 might take too long to work for him - his cancer is aggressive.  We are trying to cover our bases - 2nd opinion scheduled at Moffit (hoping to find out more about the XL888 study) and have contacted UCLA about Dr. Lo's DNA sequencing work on Zelboraf resistance.  

This site has been so important to us - we read it everyday and are inspired by so many positive stories.  Thanks in advance for any advice.  

Jeff's Mom 

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Lilylove414's picture
Replies 3
Last reply 4/3/2012 - 5:37pm

So I did a little research. I used to love donating blood, and once you have melanoma you can't do that anymore. Bummer. What I can't find the answer to is if we can leave the country. I want to go to the Bahamas one day! Oh home treatment is getting easier. I have yet to stick myself with the needle haha. I'm 25 and I make my mom do it. I think she's going to make me do it soon though. Gah! Needles never used to bug me, now I want to be as far away from them as possible.

Oh! I went to see Hunger Games with my boyfriend and his family. His mom and I LOVED it! I can't wait for the 2nd one! Eeee!!

I'm also learning that eating healthier helps me feel pretty good! I'm not a health nut by any means but sodas have a limit now, and ice cream is consumed less often. Baby steps. I like going on walks, too. I'm determined to be a sexy lady haha.

Gotta say God has been super good to me. This hasn't been a smooth ride but honestly this is easier than my parent's divorce, and I believe my faith has a lot to do with that. They split up 12 years ago before I became a Christian.

Anywho...let me know if I can pray for you or someone you know! I spend a LOT of time at home and could use something to do haha. Other than daydreaming about having a dog again. And being hot. Girl stuff I guess.

Take care lovelies!
Jaimy

If God is for us, who can be against us?

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Phil S's picture
Replies 20
Last reply 8/17/2012 - 9:10am

Okay, all these trials are getting so confusing! I am pretty well read on melanoma, but I am a liberal arts kind of person NOT a scientist, so any help would be welcome. My understanding is that BMS has an anti PD1 trial called MDX 1106, which shows on the clinical trial.gov website with one of the sites at Dana Farber in Boston. Yet, when I inquired about this trial at Dana Farber, they told me this trial wasn't open, and the clinical trial website is not up to date, frequently months behind, well that's a problem! Still, I don't understand why this BMS trial is closed. We are meeting with staff at Dana Farber next week as they said there is an opening in their Genentech trial with anti PDL1 drug, but even after reading about this drug not sure I understand the differences between drugs. I know that Cure Tech, Merck, and Glaxo Smith Kline all have anti pd1 trials and we are willing to travel if necessary. We want to make the right decision for Phil's treatment, but I am on a huge learning curve, as now I heard that tumors that express certain proteins respond better to anti Pd1, yet I don't think his tumors have been tested for these proteins. I need a Jimmy B to just tell me what to do, help! Anyway, Phil has completed six rounds of biochemo at MD Anderson, and has cells frozen for adoptive cell transfer, we are just not sure when we will get a slot, and I want plan B ( it's really plan C, D, or E, but who is counting), in place. Thanks for all the support, I love the mpip bulletin, dealing with stage 4 melanoma is hard enough, it's nice to have a place to go to where people truly understand! Valerie (Phil's wife)

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KevinM's picture
Replies 14
Last reply 4/8/2012 - 9:32pm
deardad's picture
Replies 3
Last reply 4/3/2012 - 3:27am

Thanks for everyone's input so far regarding my dad's treatment. I feel quite powerless at the moment. There are very few trials here in Australia at the moment. The only option is continue on BRAF while some tumors are stable others slight increase and add the MEK to it. We meet his oncologist on the 11 of April to discuss a plan.

Can I ask why we would remove the three/4 subs in and perhaps SRS surgery on liver tumors which are stable. The one in the spleen could perhaps be removed too or spleen removed? I know that must sound really crazy and I know it won't eliminate the disease but surely it will give my dad more time. What are you're thoughts.

There may be an E7080 trial in Sydney and we are Melbourne and BEZ235 plus MEK162 inhibitor trial in Melbourne.

How poor is that selection? 

Sorry feel flat

Nahmi

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MeNDave's picture
Replies 8
Last reply 3/31/2012 - 2:12pm
Replies by: LindyVA, Jim M., Anonymous, Rocco, Gene_S, jmmm, jim Breitfeller

Given the rate of growth of Dave's cancer in the past 6 weeks, he is leaning towards starting Yervoy Wednesday.  We have been in contact with Univ of Pitt regarding the MK-3475 trial.  The trial nurse (who was wonderful) said that only 1 seat was open on the current trial, and that was for a post IPI patient.  They did receive FDA approval for expanding the trial, so seats will be opening up for both post and pre-treated IPI patients at all of their investigational sites, but she is not sure when, and we don't have time to wait.  Given Dave's reaction to the IL-2 with the eye problem, I'm not even sure that he would qualify.  However, if he completes IPI and progresses (and has no eye issues) we can always try to get in then.  We've also brought up the issue of radiation with IPI, and his oncologist agreed that if he wasn't responding, he would do it.  Memorial/Sloan Kettering wouldn't even consider Dave because we aren't within 2 hours of the hospital, unless it is coordinated with his onc.  And given the 4 week washout period, we just don't want to wait that long.

In the mean time, if I could get some of you to share your success stories with IPI that I could pass on to Dave I would appreciate it.  He is very worried about this next stage of treatment, and I would like to reassure him that people DO respond to this.

I am trying to keep his attitiude positive, and need all the ammunition I can get - thanks to all of you for your help,

 

Maria

Don't ever, EVER, give up!

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deardad's picture
Replies 4
Last reply 4/2/2012 - 1:56am
Replies by: LynnLuc, FormerCaregiver, Anonymous, melmar

I'm interested whether we should take my dad who has a low tumor burden over to the US and try to get into a ANTIPD1 trial. Is this realistic? Do they take foreigners? Where would you recommend?

Thanks in advance

Nahmi

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deardad's picture
Replies 9
Last reply 3/31/2012 - 12:16am

Hi everyone,

Well we got my dads scan results today and it looks like after nearly 7 months Vemurafenib is loosing effectiveness.

Scans showed 1 x mm increases in the spleen, large lung tumor gone, 4 x liver tumors stable, sub fat x 3 increased by a few mm's. Nothing over 15mm as yet.

One new growth 10mm in the fat near buttock but hasn't been positively confirmed but I have no doubt that it's Melanoma.

Well we all cried and still feel really sick in the stomach after the trials nurse tells me we need to act quick as the decline can be rapid. Great....

So dad's oncologist has recommended via the nurse (he is overseas) that dad stay on Vemurafenib until he can get into Roches Vemurafenib/MEK combo (should be within a month). Really scared that maybe the MRI won't be good then what do we do? Hopefully that wont be the case. They don't like you asking many questions, re: treatments, I asked about ANTIPD1 and they don't know much about it but don't believe its running in Australia. Anyone here is AUS that knows whether that's the case? 

When I asked what plan C is if MEK fails the oncologist said "I can't read the future......" that was very unnerving as well. 

Any suggestions? Anyone doing well after failing MEK?

Nahmi

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