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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Anonymous's picture
Anonymous
Replies 8
Last reply 2/17/2017 - 11:00pm

I've recently had a recurrence of melanoma in three nodes (groin, pelvis, knee).  Other than the three nodes, everything else looks fine.  I had interferon in 2007, and had previously been in remission since 2012.  All of my previous melanomas have come on the same side of my body, from my groin down.  

I'm trying to decide what course of action to take next.  I'm being offered pembro, but want to know if this is the best, next step.  Doctors are confident it can be effective with the least side effects.  I'm BRAF positive as well.  I would appreciate any thoughts or advice.  I know there isn't any perfect option, but I'm asking what would make most sense for this stage?  Thanks, and best to all of you.  

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Gibsongirl's picture
Replies 13
Last reply 2/16/2017 - 11:21pm

Hello everyone, I'm a 37yo female who developed a small black shiny mole a few months ago. It was very tiny but was not a mole that changed, just popped up. I really just knew when I saw it. (I'm a midwife and have been in health care as a nurse for years).

They did a shave biopsy, which in hindsight I realize wasn't the best course of action on Monday the 6th. I just knew it was melanoma but the shave was pretty deep and I figured it would be gone. I was surprised when later that evening I took the band aid off and there was the same thing, same size in the same spot. I panicked knowing this can't be good. I got the call today 9 days later that yes it is mm. It was just shy of 2mm in the biopsy and obviously there is more still in my thigh. I'm scheduled for Tuesday the 21st for I guess what is a wide excision. They said they'd be taking a large area down to the muscle and I'd have multiple internal and external stitches.

The report said mm in situ. I ask her how they could determine that when I still have some in my leg. She didn't know and the surgeon is on vacay and won't be back until Monday but without WE they can't grade it? They won't be doing any lymph node tests until the lab results come back and say it is needed, but from what I have read it should be done at the same time?

If anyone has any advice and possibly if I should run to a different practice (I have national insurance that is good thankfully). I'm a mom to a 6yo special needs daughter and I need to make sure I'm doing everything right. I'm beside myself. I'd feel better if it weren't so deep. Someone with more knowledge please help, and be honest. Thank you in advance.

GG

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CindyCo's picture
Replies 4
Last reply 2/17/2017 - 2:36pm
Replies by: debwray, CindyCo, _Paul_

My mom had her first dose of Keytruda last Wednesday (Feb. 8) after 5 doses of radiation (which ended Jan. 27), with mostly fatigue and nausea as side effects so far. The primary anal mass has noticeably shrank since she started radiation, but there are ten or so new little white bumps all over the anal opening (they look like canker sores).  This morning, there are some new ones underneath an external hemorrhoid.

I sent a picture to her oncologist and he thought it looked like melanoma from the picture. The white bumps make it painful and stings when she urinates or tries to put ointment on it. Has anyone else experienced this, and did it turn out to be melanoma?  Is it possible for the primary to get smaller while there is progression elsewhere?

I always thought that melanoma wasn't painful, which is why I was hoping it was radiation breakage.  Also, the outbreak happened pretty suddenly and quickly (we see that area every day, so we would have seen them if they existed all along.  I know that it may take a while for immunotherapies to kick in, but these new developments make us pretty anxious.

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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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NSNewf's picture
Replies 11
Last reply 2/16/2017 - 11:20am
Replies by: NSNewf, slouttit, Mark_DC, debwray, jennunicorn, Anonymous

I am currently waiting for a date for an L5A neck dissection. I met the oncologist yesterday and my treatment option is HDI or nothing. (I am Canadian). IPI and Pembro are only available at Stage 4. There is a possibility of a trial HDI or IPI or Pembro.

Assuming I don't upstage from 3a following dissection and the trial is not an option what is the feeling about HDI given the results from Sunbelt Trial that doing HDI does not have the prognosis any better by doing observation? Btw sitting at home not working while on HDI would drive me crazy 

 Thanks for any feedback. Sorry to hear you are going through this. 

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

 

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_Paul_'s picture
Replies 17
Last reply 2/20/2017 - 6:45pm

 I handed up needing another operation.  I had another drain tube put in to mdrain the fluid from my chest. I am in the ICU waiting to get moved to the floor. I have to get healthy enough to get into the clinical trial.

 The good news is that I am healing. There is hope I will win the race and make it into the clinical trial in LA.

- Paul

 

To exist is beyond fantastic.

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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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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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lisaha's picture
Replies 4
Last reply 2/14/2017 - 6:38pm
Replies by: lisaha, Janner, youngann

Hi All,

I have studied my shave biopsy report and done a lot of reading of journals online as well as here on this group.

My diagnosis is "mostly in situ" with "rare, few cells/focal invasion" into the dermis.  Breslow=.15 and Clark II.  

I am undergoing a MOhs in a couple of days.

My concern with my biopsy, which is basically otherwise negative (no ulceration, etc... 0 mitotic rate "seen") --

The Deep Margins are not clear--there is malignant melanoma to 0.1mm of deep margin and it also has melanoma in situ present on it.

Doesn't this pretty clearly indicate that my Breslow's level as it is currently is probably going to be upstaged during the Mohs???

Need help--thanks!!

Sincerely,

Lisa

 

Lisa

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adriana cooper's picture
Replies 5
Last reply 2/16/2017 - 11:51am

I found this the other day during my research on WBRT.

Long-term stabilization of leptomeningeal disease with whole-brain radiation therapy in a patient with metastatic melanoma treated with vemurafenib: a case report

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3880202/

 

Adriana got to come home yesterday and has been managing pain relatively well. Day 4 of lumbar and WBRT coming up. Boy that mask doesn't look fun but only about three minutes of treatment duration. The worst part was making it and targeting which took considerable time. She wished she had accepted the drugs in hindsight. She is awesome always with a smile on her face even though she has to put up with me. 

Need to get a new bed for her and new chair as ours are not comfortable for her. Occupational therapy discussed the potential for a hospital bed at home but she was discharged before they could arrange it. 

Any info on hospital bed rentals and specifically Medicare/Medicaid coverage would be appreciated.

 

Rob

 

Adriana

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Bob B.'s picture
Replies 3
Last reply 2/15/2017 - 6:03am
Replies by: _Paul_, Charlie S, Anonymous

Several years ago I received melanoma (also basal cell) excision surgeries at Moores Cancer Center.   Previous to that I received several other melanoma excision surgeries.  All told, I’ve had 6 surgeries for melanoma.  

As we know, melanoma may return to a different location at any time.   One occurrence is usually followed by more.

(1)  Is aggressive melanoma considered a “chronic condition” for purposes of State or Federal Insurance coverage (MediCal, MediCare, etc)?                   

(2)   If so, how long between the appearance of new, non-recurring melanoma tumors does Melanoma continue to be defined as a “chronic condition”?

Thank you for your help.

Best wishes,

Robert James Beadle

The Only Good Legend is a Dead Legend.

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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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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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Hi, here's an update on my husband Steven. Mets in brain, and body. WBRT in January. He was tapered off decadron  and was taking nothing anymore on Tuesday and Nivo/Ipi started 2 days later. He already was extremely tired after radiation, but tapering off and the infusion all together made him even more exhausted, on Friday, he could hardly do anything and was having a fever. After talking to oncologist I brought him to ER, but nothing really explained the fever and they said it was too early for auto-immune side-effects. MRI was also done, but no real explanation, one big tumor had shrinked they said, other were still there and seemed to have some edema, but they wanted to wait with steroids to soo how it developed, so we went home again with some steroids ' just in case'.... On Satuday he got realy lethargic and confused and bad balance so I called again and ended up in the ER again en they decided to start on steroids  by IV, as a tablet at home did not have effect. So now on Monday we are home again, and the IV's with steroids really brought him back. However, it also stopped the immune cells working....so immunotherapy is not doing the work right now. We are going to taper him off in the next weeks, but I'm so nervous that he will get oedema again. Whenever he seems little more confused I get nervous. He then also is difficult to talk to and does not raelise what is going on. Today he's really clear and has insight on how bad he felt this weekend and remembered how weird he reacted to me. But it's very hard dealing with that and I even had to get angry to get him in he car to the ER, he was SO lethargic ! .....sigh.... Any experiences, insigts, helpful comments are welcome

Judy Steven's wife, who is stage 4, ipi/nivo starting mid February

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