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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Cindyco's picture
Replies 4
Last reply 7/7/2017 - 3:43pm

So after 2 cycles of Abraxane (which my mom tolerated pretty well and didn't even go bald), we just found out that my mom progressed again.  She now has four lesions on the liver, and some increased lung nodules.  Dr. Ribas at UCLA recommended that she start clincial trials, but due to her previous toxicities to immunotherapy, the only trial that she qualifies for at UCLA is for RGX-104. 

We then went to Dr. Hamid at the Angeles Clinic and he offered us IMCGP100 (which is offered at UCLA as well, but I think Dr. Ribas is more conservative about what he offers us).  It's currently being amended to allow for mucosal melanoma, but it has had some good initial results for ocular melanoma.  We do have to wait for the trial to be officially amended (does anyone know how to find this out?), which Dr. Hamid hopes will coincide with the washout period for the Abraxane (2 weeks to go).  Dr. Hamid has already cleared my mom's previous toxicities with the medical monitor, and he doesn't think it will be an issue (he was even willing to try another dose of Keytruda).  Dr. Hamid has really been an amazing advocate for my mom and we are so glad we are doing the trial with him.  If anyone is in this trial, I'd love to hear more about their experience. 

Dr. Ribas recommended that we try Sloan Kettering and MD Anderson for other trial options, and we are in the process of looking into those just in case IMCGP100 becomes not an option for us.  Interestingly, he told us not to volunteer too much information about her toxicities when she goes elsewhere. 

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KatelynAmber's picture
Replies 4
Last reply 5/15/2017 - 3:30pm

Hi there everyone, I have been having some symptoms and was wondering what you guys think. I am a sophomore in college and have not had any previous cancer history. Both of my parents do have many freckles and moles though. I also have multiple moles and freckles on my body. Probably around 50 per arm or so. My first symptom was two moles on my neck raised and were a little itchy. I didn’t know why they were like that so I just picked at them until they were down to their normal size (I know, I shouldn’t have done that). A month to a month and a half later I started bruising very easily. I would wake up and have 4-10 bruises between my arms and legs that I did not know where they came from. Then two moles on my right arm raised and became inflamed a couple weeks ago so I watched them closely. When I touched, them they were more sensitive than my other ones. They were red around the mole too. After two days, mole number one started to have a dark brown spot that covered about 20% of the mole. The two moles then began to form a scab. I made sure not to touch or pick at them but after about 3 days, mole number one was fully a scab and mole number two was about half a scab, and half still the mole. I went to see a doctor on campus and she thought I was just picking at my arm in my sleep (very unlikely) and she picked off the scab. Under the scab was not a mole anymore! It was like the mole just fell off. The doctor then found a mole on my back that was brown but had a black spot in the center. She was concerned about that one more than the ones on my arm. Besides the bruises and the scabbing of the moles, I feel normal. I was wondering what you guys think this could be. Thank you so much for your help!

Katelyn Gallun

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Remi's picture
Replies 11
Last reply 5/12/2017 - 4:01pm

Hi, I just wanted to share my worries with you to see if anybody else has experienced this or if it's just health anxiety. 

I had invasive melanoma removed from the very top of my left arm 3 years ago which was in vertical growth phase so I was told that I had 5% chance of reccurrence (I know that very good and I'm grateful).  I was told I had to have check ups qtrly for 2 years however I stopped after 1 year. (could be something to do with having insurance at the begining but then losing my job with the stress.  They are not as keen to see you once your not paying) I am in Jersey Channel Islands. 

For months now, maybe even a year, I keep aching in that armpit and when I lift my arms above my head the left arm pit looks lumpy compared to the right.  

I showed this to a doctor and she she just asked my to raise my arms and said "oh yeah it does look puffier than ther one but in the best of faith I would say its probably ok" and that was it!  Im not freaking out about it or anything but it's on my mind. 

I am not sure how a lump in the armpit would look or feel.  If I run my hand over it with my arm up its lumps but I put my arm down and I can't feel any. 

Can anybody offer advise?  Thank you in advance x 

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Kms's picture
Replies 10
Last reply 5/12/2017 - 7:48pm

I was just recently diagnosed stage 4. Had surgery to remove melanoma from my lung. Was referred to a general oncologist who gave me no hope. Currently looking for specialist in Chicago area. One referral was to.Dr Clark at Loyola. Scared and getting lost in mass amount of information on clinical trials

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Christine.P's picture
Replies 23
Last reply 5/16/2017 - 11:02am

So I just found out that I do have the BRAF mutation after my initial diagnosis/testing in 2015 said I was wild type. Because of this, I never really paid much attention to information about the mutation since I did not have it. Well, now I have all sorts of questions. My doctor is recommending Tak/Mef since I have recently failed ipi/nivo followed by nivo (four new tumors in my leg, hip, and lower back). 

I tried searching this site for posts related to BRAF and Tak/Mef, but found it hard to wade through all of it. Does anyone have links that I might find useful? I have to admit I've been reading about side effects, and - while I know they are worst case scenarios - I am a little scared. I had few side effects with just nivo (mainly fatigue, headaches, and achy muscles and joints) so I'm hopeful I will also suffer few side effects with the new drugs, but the chances of new cancers, heart failure, etc. is pretty overwhelming. 

If anyone would care to share their own experience with Taf/Mek, I would love to hear how you fared on the drugs. 

Many thanks for your continued patience with my questions as my disease has changed and progressed.

Christine P. 

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Lunakitty's picture
Replies 4
Last reply 5/10/2017 - 5:08pm
Replies by: Jamie1960, Lunakitty, Anonymous

I had a mark on my ankle that met the abcde criteria. It wasn't a mole though it looked more like a birth mark. The doctor said it was very superficial whatever that means. I had a baby in October and looked back on pictures of my swollen feet and the mark was a very very faint brown spot, hardly noticeable. I don't know when it started to change but my son is 6 months old now and it's like a brown and pinkish birthmark looking thing. It's not raised at all or bleeding or anything. I'm scared as hell :( I just want to know if there is hope that it could be something else.... my biopsy is takin so long..

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Jeff_in_FL's picture
Replies 7
Last reply 6/5/2017 - 11:16pm

Hi all,

Here's a question that just popped into my head: Just had Excision w/nodes. If everything comes back clean, would a PET scan possibly be a good idea just to wrap things up a little better? 

Just trying to keep things straight in my head. The surgeon took the closest SLN, and said that there was no need to take any others that lit up on the scan because any irregularities would show up on the closest one ...no need to check beyond that point. Hope he's right! Anyway, just wondering how often a PET scan is used after a clean margin, node check.

Just loved those pre-scan injections!

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When Shane was in for his brain MRI last night he was in there for a very long time. Longer than any other brain scan. I'm hoping that doesn't mean something negative. It was 25 mins. Anybody else know if that a normal amount of time?

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mrspink's picture
Replies 4
Last reply 5/10/2017 - 9:26pm

My dad was recently diagnosed with Stage IV melanoma. It's been a very rough two months with multiple crainiotomies, raditiaion,starting on the new meds, and just the emotional rollercoster (as most of you know). 

My mom has also turned into his full time caregiver and is doing an awesome job but again it's been a very hard transition. 

So any ideas for a nice Mother's day gift? Usually we keep it simple with a card and flowers which I will do but wanted to also do something to maybe relieve some of the new stress or something she can use in her new role as caregiver. 

 

 

 

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Shaneswife's picture
Replies 4
Last reply 5/10/2017 - 8:19pm
Replies by: Anonymous, momof4boys, jbronicki, Bobman

Found out today that my company is letting me go. Got bought up by a bigger company so now they are down sizing. Saddest part is that I will lose my benefit coverage for Shane and our family. Shane still has drug coverage benefits but they only cover 90% unless you go to Costco. And his cancer drugs are fedex'd to him monthly from a pharmacy and I doubt you can get your Cancer drugs st Costco. Sigh. Just another setback. Guess I shall have to do some research into compassionate access or funding. Thanks for listening to me rant  

 

Janis

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Scooby123's picture
Replies 5
Last reply 5/30/2017 - 1:40pm

Hi all hope you all having a good day as can be in a melanoma world. My GP has given me Fluoxetine for hot flushes am having. Think it's the change that I am going through. Anyone had these and had any side effects when on treatment. She said it would be fine but I am always concerned if taking meds that could interfere with treatment ect.

Scooby X

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betsyl's picture
Replies 6
Last reply 5/10/2017 - 12:01pm

Hey, all,

My husband is almost halfway through his planned six-month course of first-line Keytruda. 

Now that he's had four infusions, he's really feeling the fatigue (and some joint pain) and is wondering if these effects will subside when treatment ends.

If you are in the post-treatment phase, what has been your experience been with regard to persistent side effects?

Thanks and best wishes!

 

-Betsy

 

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magnus31's picture
Replies 2
Last reply 5/14/2017 - 12:40pm
Replies by: magnus31, Polymath

Dear all,

I hope you are well despite being affected by melanoma.

I have been stage IV since late 2014 and have been treated with Ipi, Nivo, both in isolation and combination. Now after over two years of successful PD1 treatment, a new lesion was recently discovered in my intestines. Although it was surgically removed a few weeks ago, I am still extremely anxious that I might be developing resistance to PD1 drugs.

Does anyone know how proper resistance is defined? Are we talking any sort of disease progression after a period of PD1-induced response or is the scale of progression taken into account in any way?

Has anyone here had long-term PD1 response despite localized lesions having appeared in the interim? Does my newly discovered lesion confirm first signs of PD1 resistance? The PD1-treated patients making the plateauing survival curve we so often see, do we know if they have been completely without new lesions since treatment started?

My doctor say it's impossible to know where I stand and says I could have next new lesions in two months or in ten years and I just want to believe the latter... Encouraging testimonials much welcomed.

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Shaneswife's picture
Replies 5
Last reply 5/10/2017 - 3:11am

It's scan week. Brain MRI and chest/pelvis/abdomen CT scans. We get the results next Tuesday. Shane's had a cough for the past month so I'm expecting that the dabrafenib and tramentinib likely aren't working in the lungs anymore. It could go either way for the liver or brain but no idea where else it may have progressed less the spine as he's having back pain lately. We expect him to be switched to an anti pd-1 inhibitor likely pembrolizumab once progression is confirmed. Unfortunately our health care doesn't cover the combo and Shane is still ineligible for any trials. And still I'm worried about his steroid use to control symptoms in combo with the pembro. Guess I'm just a bag of nerves this week. 

 

Janis 

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newmanmark's picture
Replies 7
Last reply 5/10/2017 - 3:16am

Hello,

I am on Nivolumab and was doing well with it.  My latest bloodwork showed elevated AST and ALT levels.  The doctor has taken me off of treatment and put me on steroids in an effort to bring the levels back down.  I was wondering if anyone with a similar experience was able to get back on treatment after the steroids were successful in returning your liver levels back to normal?

Mark

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