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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Replies by: Bubbles, Spl25, Ed Williams

I know there are a few clinical trials looking into this, but I'm looking for data (even preclinical) regarding whether Melanoma cells are *more* or *less* likely to be recognized by cytotoxic immune cells after BRAF therapy. Has anybody heard of a CR or durable response to PD-1 *after* BRAF inhibition? I've certainly heard the stories of disease coming back "angry" after BRAF therapy (in the minority of patients, of course). 

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JustJaren's picture
Replies 4
Last reply 2/16/2017 - 9:03am
Replies by: debwray, JustJaren

Anyone had this? What was recovery like? Time frame? Any complications?

 

Thanks in advance!

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Cathy M's picture
Replies 22
Last reply 2/16/2017 - 4:55am

John Moore       9/12/1960 - 2/4/2017

It is with a heavy (and sometimes angry) heart that I share my husband's passing on the board. After 3+ years of battling Stage IV, his fight is over. He held on to his fighting spirit to the very end. He died with me holding his hand, playing his Eagles World Tour DVD and with me telling him it was ok to go, I would be fine, and how I dearly loved him and the time we had been able to spend together. 

Melanoma is a horrible disease.  I watched it break down his body but never his spirit. I watched it over 3+ years take from me my lifetime companion little by little. But what it can never take from me are my memories. Mountain biking, ATV racing, Jeep exploring, walking our Great Dane, moving cross country because it was my dream to "live in the west".

When diagnosed Stage IV, his goal became to raise awareness. He participated in news interviews. I made awareness packets every year and distributed them at the cancer center where I worked and with friends and neighbors. He was interviewed for a documentary about genomic sequencing that was made into a DVD by the students at Dixie State Univeristy in St. George, Utah.

So...I will continue his fight. I will continue to participate in 5K's. I will continue with my information packets. I will volunteer for skin cancer checks at the dermatologist's office.  Melanoma may have taken the love of my life physically from me but it cannot take his fighting spirit and our determination to educate others about it's silent deadliness. 

 

Cathy

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laulamb's picture
Replies 6
Last reply 2/16/2017 - 4:31am
Replies by: Anonymous, youngann, laulamb, jennunicorn, UBContributor

No abnormal focal nonphysiologic FDG uptake seen to suggest mestastic disease.

YAY!!  Thanks for everyone's good thoughts and prayers.

There was nothing on the PET scan report that discussed the 4 mm lung nodule.  So I am guessing it was still 4 mm and not able to be seen by the PET Scan or it was gone.  Does anyone have an insight on this? 

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jennunicorn's picture
Replies 12
Last reply 2/15/2017 - 5:52pm

So, my primary care doc had me do some regular blood tests last week, one of which was Vitamin D level. I have been curious since my melanoma madness began over a year ago what my level was, but was one of those things I kept forgetting to ask my onc to test for me.

Well, it's super low at 13. Not really surprised that it is low, but was hoping for a little better of a number. My doc wants me to start on a prescription Vitamin D 2 at 50000 iU. I sent a message to my onc to make sure that will be ok to take while on treatment before I start it. My primary wants me to take it for 2 months then retest me and I guess go from there.

Has anyone else been on a prescription Vit D before? I didn't even know it was a thing until now.

Of course having read (on awesome Celeste's blog) that low Vit D levels in mel patients is associated with poorer outcomes.. I want my levels wayyy up! I guess my orange juice w/ vit D and almond milk w/ vit D just isn't doin it. On top of this my cholesterol tests were a little high.... ugh, can't I just eat cheeseburgers, drink wine, and not exercise without having my cholesterol affected?? No? Dang it! Time to dust off the treadmill..

Jenn -  IIIC - currently doing Ipi/Nivo (Yervoy/Opdivo) 

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Abbygx2589's picture
Replies 7
Last reply 2/15/2017 - 3:46pm

Hi everyone,

This is my first time posting but I read the boards here all the time. Thank you to every one who posts and supports each other. I am writing about my father who was diagnosed as stage IV last March (2016) after being diagnosed with stage 2 melanoma 17 years prior. We discovered it through a chest x-ray last winter , after his doctors had ignored his subcutaneous lumps for about a year, calling them lipomas. After all of the intial scans, we found out he had spots in his muscles, lung, pancreas, and multiple spots in the brain. He underwent cyberknife and began the ipi/nivo combo last spring in a clinical trial at BIMDC in Boston. He has shown response which is great and we are so thankful for- a 33% reduction in tumor size across the board- including the brain. After his last combo in July he became very sick and discovered he his pituitary had stopped producing cortisol so he now takes a low dose daily to make up for this. It is hard to believe he has stage IV cancer with how active and normal he seems. Anyway, finally, the reason I am writing is because his last scans were stable, the tumors did not shrink. This is the first time that nothing has shrunk. Has anyone had experience like this?  I am so afraid that the next scans will show growth. Have others experienced regrowth after shrinkage has turned to stability?

Thank you all so much

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Hey,

First time posting, although I've been reading the forum for years.

My wife is Stage IV - primary site in thigh, now with multiple brain mets - all of which as have been zapped with SRS.

She had 8 months of PFS with Tafinlar/Mekinist but that's over. Tomorrow she starts Keytruda, and will transition off Taf/Mek.

Our onco is being a bit vague about the efficacy of Keytruda with brain mets, esepcially given the previous Taf/Mek treatment. Same question regarding side effects.

Anyone have experience and/or knowledge?

Thanks,

Steven

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45_dps's picture
Replies 3
Last reply 2/15/2017 - 10:26am
Replies by: cancersnewnormal, Hukill, Anonymous

On January 17th I filed a disability claim with my employer (major health technology company) based on my diagnosis of stage 3b melanoma.

I wasn't planning to take disability until my surgery for lymph node removals in my neck (and surrounding tissue where positive-testing nodes were embedded).

I completed all the paperwork and my oncologist completed their portion of the paperwork. Then I asked what else needed to be done to get an approval. The insurance company said that no approvals are given in advance because schedules change (2nd opinions, surgery scheduled, etc). However they said that as soon as I was admitted to the hospital they would be approving my claim automatically.

On Feb 9th (Thursday) I had my surgery and was in the hospital til Feb 13th (I put in sick days for Feb 9th and 10th just to be safe). On Feb 13th I called the insurance company (they hadn't called or emailed me, and my work accounts still listed me as active rather than on leave). I was told that on Feb 10th they had called the hospital (it's a major health system in Southern California) and were disconnected while in the phone tree. No other actions had been taken on their part (they didn't call the hospital back and didn't pursue any other avenues for verification, and didn't contact me or my wife).

I'm furious and want to hire a lawyer just because I can't believe how little they have done in nearly a month! It seems like I have no recourse except to accept the very little they are doing to move this claim forward. As of yesterday I am absent without leave from my employer because I didn't put in for sick time, yet I am out of the office without an approved disability claim. My boss knows all about the situation and tells me not to worry about it, but I don't understand how they can accept such poor follow through from their disability insurance company.

i also opened a claim for social security disability yesterday because I just don't know what else to do.

-No progress on my employer's disability claim

-My employer's disability claim has been worded by them to be specific to the surgery and not to my diagnosis of Melanoma. (So I'm worried they are going to say I'm approved for only 2 weeks of leave to recover from surgery and no coverage for my subsequent physical therapy of shoulder and speech, and immune therapy).

-Social Security Disability has a compassionate allowance for metastatic melanoma, so hopefully it gets approved easily and I can feel comfortable that I am on some disability plan (even though it will pay less than 25% of my previous salary vs. the 55% which my employer's disability insurance policy would pay).

I'll just finish this note off by saying that I hope this is all in my head and that everyone working on my claim has the best intentions but just limited resources to move things forward.

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Coming up, April 23rd.  Meet fellow patients and families.  www.safefromthesun.org

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/15/2017 - 9:34am
Replies by: cancersnewnormal, UBContributor, Anonymous

Hello... I had a Stage 1 melanoma  WLE removed from my arm.  They took the stitches out after two weeks.   Now... about a week later... the wound has opened (I think I lifted something too heavy).    It looked infected so they cultured it and put me on antibiotics.  There is a hole about the size of an M&M that bleeds occasionally.   

They said they cant stitch it up again- it has to heal on its own and it will have more scar tissue.    My question is.... if in the future there were to be a melanoma recurrance at the site, would it grow through the scar tissue?   Extra scar tissue wont force it to stay under the skin and grow deep - will it?    I want to make sure this wont present problems later.  

Any thoughts?    

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vycki727's picture
Replies 5
Last reply 2/15/2017 - 8:58am
Replies by: vycki727, UBContributor, Anonymous

I have just returned from my first specialist appointment, after being diagnosed with T1a melanoma in my thigh - 0.8mm, no mitosis, no ulceration, clark level II-III, regression present. 

I have alredy done the WLE, and the results from that were clear - no more cancer found.  Given the state of my tumor, plus the fact that I am pregnant, we did not do an SNLB. 

With the oncologist today, I had an ultrasound of my lymph nodes in my groin.  Everything was going fine, till the oncologist found a misshapen one.  It is still small, not swollen or enlarged, but also not a normal oval - instead, it is thinner on both edges, and thicker in the middle (like a snake swallowed a mouse type of thing).

When I asked if he thought this was because of the melanoma, he said "no".  Still, he said that we should watch it and I will go back in one month to have another ultrasound of it.

I was too firghtened and didn't have the foresight to ask him - if it isn't malignant, what could be causing it?? Isn't it most likely malignant??

I know the odds of a T1a tumor like mine spreading are low, but it is still a possibility.  I am seriously scared, and wondering if anyone has any idea what this could mean - have you had misshapen nodes that came back clear for cancer?  Is this a thing that happens?

The internet has pratically no information on misshapen nodes, just swollen or hardened ones, so curious if you all have any insights.

Thank you in advance for your experiences/thoughts!


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MovingOn's picture
Replies 1
Last reply 2/15/2017 - 7:48am
Replies by: Anonymous

Amazing how quickly research is advancing. Genetics is an entirely new tool set for building possible cures. Glad that we at living in modern times and what seems like hyper-modern times for research advancements!

https://www.sciencedaily.com/releases/2017/02/170208111533.htm

Searching for clues about how the body signals the lack of oxygen in melanoma skin cancer, National Institutes of Health (NIH) researchers focused on HIF1? (hypoxia inducible factor 1 alpha), a protein that acts as a sensor for oxygen and nutrients in many types of cancer. They discovered 40 new genes that are either turned on or off by HIF1?, and 10 genes that were associated with the amount of time it took the melanoma to move from the original tumor to the rest of the body. They published their findings February 6, 2017, in Pigment Cell and Melanoma Research.

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_Paul_'s picture
Replies 28
Last reply 2/15/2017 - 7:05am

Just a quick update. I just got out of an operation here in Seattle.

I'm in the ICU. The operation was to improve my breathing, which was a success. So now I'm just recuperating and I'll send more when I have some more energy.

To exist is beyond fantastic.

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Adriana has been having increasing weakness in her arms and legs for several weeks now indicating likely advancement of LMD. This past Friday she started having severe lower back pain wrapping around and down her legs. Originally thought it was a pulled muscle strain from leaning back on the bed awkwardly. Pain progressed until it was unmanageable and excruciating. Palative care directed us to the ER twice (spent 8 hrs first time and then 14+ hrs on the return ER visit 10 hrs later when she was ultimately admitted to the hospital this AM. Lumbar MRI during ER visit indicated buildup of CSF cancer cells around the spinal cord in the entire lumbar area but no solid tumor pinching. Thus the cause of the pain. A series of standard radiation sessions is planned for this area to hopefully improve her pain to a point that it can be managed with oral or other relief available while at home. Additional discussion is ongoing (pending tonight's brain MRI) with a proposal of performing WBRT to treat her (at least 3) solid mets in addition to the cancer in her CSF and Meninges. It is understood that none of this is curative and that the only way to potentially attack all of the cancer in her CSF would be to perform entire cerebral/spinal radiation which has been deemed entirely too toxic and negative risk/benefit by all involved. We inquired if GK on the solid tumors only (leaving the rest alone) if in-fact the number is still only three and relatively small in size might be appropriate as a palliative measure only in order to "buy" a bit more time. Not really looking to grasp at straws with this idea but looking at it as an alternative to WBRT and it's related downsides.  The Oct, 2015 GK  provided an additional 1.25 years. The radiation oncologist offered that this could be entertained although he didn't really seem too keen on it.

In the meantime BRAFi has been halted in order to start radiation as apparently they don't play nice together. One upside she did have one last pembro infusion on Monday which may be of some benefit although the Dr. doesn't feel that it is working and is why that is to be the last. He restarted her on BRAFi that night, had 2 doses before the ER fun began.

Looking for thoughts on WBRT from those that have experienced its downsides vs upside. Our understanding that on the benefit side, it hopefully will provide some improvement or at least arrest the decline in  issues with her cranial nerves and pain relief. We will also be keeping in mind that the reality is that she likely has a very limited time left. 

I have been doing my best on WBRT research on here tonight but your help is appreciated and a decision needs to be made soon. I really hate this learning as you go about all of this stuff but you do what is necessary. I greatly value the considerable knowledge and experience of this group.

I hope to have the love of my life back home soon. I miss her  ;_;     :>((

Rob

Adriana

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besjana's picture
Replies 7
Last reply 2/15/2017 - 6:40am
Replies by: _Paul_, besjana, Jacklyn, Anonymous, AvaL, debwray

Hello everyone!

I was reading your posts the last couple of days and I felt encoured to share my melanoma experience. I was firstly diagnosed on October 2015, nevoid melanoma, Clark IV, 1.5mm, excision in toto. Sentinel node biopsy on December 2015 resulted tumor-free sentinel. I was recommended for low-dose interferon therapy for 18 months but decided myself not to have it (regretting it now very much!!) Follow ups were ok until November 2016 where a lump appeared on my left axilla, almost at the same spot as the sentinel scar. I had to change doctors since I live in Denmark now, and when contacted with the doctor in Denmark on November 2016 they advised me to wait and see since it did not look dangerous to them. On January 2017 I had a needle biopsy to test the node. Waiting for the results now... I am scared and very anxious. I have exams in 2 weeks but I am not able to focus on studing...

All the best to you all!

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