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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mombase's picture
Replies 3
Last reply 10/19/2011 - 7:42pm
Replies by: mombase, jag, triciad

Wow, nothing really fit to print! I had my second infusion yesterday morning, and I have fewer side effects (so far) than I had after the first infusion! I met briefliy with my onc and he said that my numbers from blood tests are great. I couldn't be happier right now. Oh, shoot, here come the tummy rumbles!

Cristy, Stage IV

Getter done!

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TracyLee's picture
Replies 6
Last reply 10/19/2011 - 7:47pm

Hi y'all,

Anyone else done ipi first, then BRAF immediately following?

My hair is really thinning. I've called the BRAF helpline, but they can't say if it will stop thinning or I'll lose it all?

I'm responding terrifically, so I'll certainly deal with the hair issue. I work full time, feel great, so who am I to complain?!

This Friday is squish-o-gram (mammogram for you guys) for lump in breast. Monday is CT scans, follow up from BRAF and ipi.

Helpline says I'm the first to report breast lump, only the second to have fairly severe ereythema nodosums (painful lumps, come and go). Yes, I'm SPECIAL, I always tell my husband that.  :)

Soooooo happy for the positive posts, lifting everyone lurking or posting, whether in the valley or on the mountaintop, in prayer.


Stage IV

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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mom3girlsFL's picture
Replies 2
Last reply 10/20/2011 - 4:50am

It's going to be a needle biopsy Monday morning to see if the popliteal node is mel.  I requested this doc who did my obturator node biopsy and gave me my results as soon as I woke up so I am hoping for the same Monday.  Of course, I am hoping he says it's a good ol' infection instead of mel....hey, a girl can dream, right?

Have a great day everyone!


Do not fear tomorrow, God is already there.

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Terra's picture
Replies 19
Last reply 10/20/2011 - 6:04am

Hi!  We just received news yesterday morning that Derek is a late responder to ipi! 

His last injection was Aug 10 and follow up scans showed both larger mets and new mets in liver, a new met behind eye, and a larger one in lung.  He was given immediate radiation to eye and lung for 5 days because the met in lung was encasing his bronchial tube and he could hardly breathe and after that they suggested chemo for palliative care and he was given 2-3 mos. 

We contacted NCI for TIL immediately and after 1st visit we were told he needed to wait 3 wks for radiation to work in lung and steroids to get out of his system.  On pins and needles we returned home and waited, Derek had to redo a pulmonary function test and be rescanned at home before he was able to return - I think they had given up on him but strangely enough the radiation worked on his lung and his breathing test was much better so he was admitted to NCI on Sunday had an MRI on Monday - brain was clear, spent yesterday morning with the surgeon, etc to get ready for liver surgery today - in the meantime I had sent his scan to Toronto to be compared with his ipi scans on off chance he was a late responder (I wasn't holding out much hope but you just have to do these things). 

Derek had left for Washington with his dad on Sunday and yesterday I received a call from our oncologist in Toronto with the best news - he had just received the scan and said the radiologist confirmed that one met in his liver appears to be stable, several mets have decreased by 50%, and still others have disappeared into the haze!

They contacted Washington and Derek was released (just before surgery!) - so he is on his way home today! 

We are happy and guarded - not knowing what to expect next and stunned by the only good news we have received in over 5 years - 3 babies and several treatments, clinical trials, major surgeries, and minor surgeries later it is hard to know what to do or think!

Thank-you to so many of you for your thoughts and prayers!

I will keep you updated!

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himynameiskevin's picture
Replies 16
Last reply 12/10/2011 - 7:48pm

Hey everyone.
There's not too much to update on, but it is another milestone in the journey, so I figured I'd let it be known for readers who still follow my posts. I just did my first dose of Ipilimumab/Yervoy. Although it's only been 5 hours, so far so good, hopefully any side effects will be minimal and I'll continue on with my future doses. And if I'm lucky it'll turn out all my cells from the ACT needed was one the last little *oomph* to clear these things out. Gosh that would be nice... We'll see, I'll keep you updated as I'm updated.

Thanks for the continuing concern and support.
I'll talk to you soon.

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Staci's picture
Replies 6
Last reply 10/19/2011 - 12:52pm
Replies by: boot2aboot, Tim--MRF, Staci, Anonymous

Does anyone have any experience wiht Yttruim 90 for liver mets? Any insight would be welcome please.

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ad2424's picture
Replies 1
Last reply 10/18/2011 - 10:56am
Replies by: Lisa13

Hi All - I had a nodule removed from my lung 3 months ago. My scan yesterday showed a 6 mm in the other lung that had increased from 2 mm 3 months ago, and 2 new 3 mm nodules. The report also comments on additional smaller nodules, possibly new.

So much for having a short break from this.

My oncologist is suggesting I start on Yervoy now.

I suggested more surgery but he said there are probably too many to get and possibly other microscopic that would be missed.

I also suggested waiting a month to see if it grows more to be sure it is a met. He thinks it definitely is.

Is my presentation the target audience for Yervoy?  Is that the obvious anwer or are there other options?

Thanks, Steven.

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Lisa13's picture
Replies 5
Last reply 10/18/2011 - 10:50pm

Last Thursday was my 4th ipi infusion. Last night I woke up in the middle of the night with the craziest itching ever. Benadryl took care of it. This afternoon, the itch has returned and it feels weird. It feels like I'm getting goose bumps and I feel a bit chilled and then the itching happens (mostly on my scalp, arms and back). I have very small non coloured bumps on my arms and back. Has anyone experienced this? I know the itch is normal as I've had itchy, dry skin since the 2nd infusion, but now it's getting worse. 

Lisa - Stage 4 

Many impossible things have been accomplished for those who refuse to quit

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lhaley's picture
Replies 3
Last reply 10/17/2011 - 11:54pm

The day was eventful at least with the procedure itself.  However it has already shown growth.  They have moved the MRI update to 4 weeks instead of 6 just to make sure. 

Details are on my Caring Bridge and much easier to post.

By the way, I do feel pretty well tonight!


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janP's picture
Replies 3
Last reply 10/21/2011 - 9:31am

 Thank you all for your bravery and sharing of stories and information.  I lurk here on occasion, but now I need some feedback.  Originally diagnosed in 1992, I'm stage IV since l998, with 2 subsequent bouts of surgery since 2000, however I did have a new insitu melanoma and a regressed melanoma in 2005.  A recent PET scan shows FDG accumulation in left supra hilum which corresponds to a  lymph node with SUV 2.77 measuring 1.2 cm x 1.1 cm.  No other hypermetabolic activity noted.   I have been very viligant and proactive in my care...doing scans every 3 months for all these years.  Because of the frequency of my monitoring all mets have been diagnosed by scan before any symptoms have had a chance to appear.  My oncologist is out of the country on vacation, and his office has scheduled an appointment with a pulmonary specialist on Nov 11.  I feel this is too long to wait.  Any feedback would be so appreciated. 


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justlittleoleme's picture
Replies 13
Last reply 10/19/2011 - 2:48pm

Long week last week.  We met Tuesday with the surgeon for a post op check up.  She removed a skin tag that was disrupted during surgery (path came back clear!)   We met with Dr. Christopher Lao at University of Michigan.  He went over the same three options the other oncolgists did.  Wednesday we met with the local radiation oncologist.  Friday back to IU Simon Cancer Center.  First stop brain MRI (clean!!!!) next with our oncologist Dr. Leslie Fecher.  We enrolled in the E1609 interferon vs. ipi.  Our only basic option since he is Stage 3B.

Radiation starts tomorrow and he will have five treatments.  We are waiting to hear all the goodies about the trial.

Not looking forward to moving away from our kids for a month if we get the interferon arm but it will all work out.

Please share your experiences with interferon, ipi or radiation.  Any tips?  I have Jane's website bookmarked!

We don't know how strong we are until being strong is the only choice we have.

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Lisa13's picture
Replies 1
Last reply 10/17/2011 - 1:55pm
Replies by: AlanM

Last Thursday was my 4th infusion. I've been tolerating Yervoy (ipi) very well with very limited side effects. Last night, I woke up in the middle of the night with the worst itching on my head and arms. I also had a small rash on my arms. My body felt like I was having an allergic reaction, so I took a benadryl and the itching and rash went away.  Today, I'm experiencing a bit more rumblings in my stomach so my immune system is obviously revved up and hopefully doing what it needs to do.

This just goes to show you that symptoms don't always come on this drug. The immune system needs time to work and when it's ready, it let's you know!

Lisa - Stage 4

Many impossible things have been accomplished for those who refuse to quit

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My wife was told by our very professional and highly respected radiation oncologist that the Gammaknife would have no side effects to speak of. Especially compared to her previous craniotomy. For her first round of two brain tumors she was very positive and upbeat, almost flip - saying the tumors were nothing and it was a piece of cake. True enough, she was able to zap those two, but my wife did have some immediate side effects (speech slurring, memory problems), as well as some longer term effects setting in around week two post-treatment (general fuzziness and forgetfulness, losing track of her conversation thread). Supposedly these would have resolved in time. Unfortunately she had another five tumors that needed to be treated about 18 days ago. Again, the radiation oncologist was very upbeat, "these are small, no problem, we can handle these, no side effects, the margins are tiny". She had no speech issues this go round (no tumor was in her speech center) and other than some general tiredness had no immediate side effects. But after about ten days, she started having more fatigue and more memory and cognition issues which persist to this point. And which she is not happy about at all. In talking this over with our oncologist he said that she was not the only patient who ended up with more issues than they were led to believe. He did think her brain would rewire and she'd regain lost function, although as my wife pointed out - by the time this ocurred, she might be in for another round of treatment and would probably never regain her previous capability.

I am pretty sure she would have done the Gammaknife treatment anyway, even if they had been more accurate in their portrayal of potential side effects. I'm also pretty sure that in order to get people to go with the treatment they were understating the side effects. Both my wife and I would have rather known about the potential side effects so that when they emerged it wouldn't have been so difficult to deal with. For me it's all about expectation management - if you know what to expect, it is easier to cope. 

She is scheduled for a brain MRI in 11 days, and we frankly expect to see more brain tumors and depending on location and number, have to make a decision about treatment, including whether to do cyberknife, gammaknife or whole brain radiation. At least this time around we are more savvy about the effects. 





Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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deardad's picture
Replies 9
Last reply 10/19/2011 - 7:22am

Well I am elated to share this news with you all.

First month scans results on vermurafenib find that my dad has had a complete metabolic response. Only a week ago a lump popped up on his neck and we were all disheartened at the thought that he wasn't responding. It did not come up on the PET and they are putting it down to an inflammed lymphnode due to a cold. His previous liver and spleen mets.....were not visible on scan, the brain is apparently clear as well...although Im not sure whether they had MRI results. I didn't go to the appointment and my dad doesn't ask a lot of questions, but I assume that's clear too (the oncologist said that it was clear - according to the PET). He still has to see the neurosurgeon as a follow up and MRI results go to him.  

I am aware that this by no means a cure, but definately the best result we could have expected. The oncologist felt that he could confidently justify taking his findings to the US regarding the use of this drug in patients with a low tumor burden. 

I don't know what this means for the future for my dad, but I hope this will encourage others.

I would like to see a combo of IPI and b raf but it's not going to happen for my dad. He is technically on a trial so I suppose we wait and hope that he continues to respond. 

Nahmi from Melbourne

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j.m.l.'s picture
Replies 2
Last reply 10/17/2011 - 8:44am
Replies by: Lisa13, momof2kids

I am past my second dose of yervoy. I have experienced almost no side effects. Some constipation, one bit of itching and thats it. DOES ANYONE HAVE ANY IDEA WHETHER THE IPI IS WORKING AT ALL. I thought that having some mean side effects actually meant that the drug was revving up the immune system. thanks much

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