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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John Paul's picture
Replies 12
Last reply 4/18/2019 - 1:40am
Replies by: cavsnut, John Paul, ed williams, Anonymous

Need to ask this question to my Onc next week.  I was told by someone in our Melanoma community that I was one of very few folks they knew diagnosed as Stage 3 not on immunotherapy.  I was diagnosed with a 1.8 primary and a single positive SLN in my neck in early 2018 but my LN completion surgery was clear.  By the Grace of God my scans and bloods have been good but now I’m worried I didn’t do all I could do to prevent recurrence.  I know immunotherapy was not offered to me as an option at the time but I would like to know the reasoning now that I am educated.  Thanks to all as I always go through a little anxiety before these 3 month checkups. 

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Raco's picture
Replies 10
Last reply 4/16/2019 - 10:34am

can anyone tell me the difference between a pet scan and a CT scan.  Which is best to use to detect Melanoma.

During my treatments I have had three of each in the last year.  all were neg. 

Just courious why some go pet and some to ct.

thanks

RACO

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Carlsbad317's picture
Replies 7
Last reply 4/12/2019 - 11:50pm

2/25/19 I had a biopsy of a fast growing tumor (within 6 weeks it went from feeling something uncomfortable to just shy of the size of a baseball.  Only a wedge was able to be removed due to where it was located under my right armpit.

Prior to the tumor being discovered I had a freckle removed that needed additional attention after the original mohs surgery.  

The biopsy has been sent to a few different labs and poorly differentiaited neoplasm is the result that keeps coming back.  Most recently it was sent to a lab and the markers came back as possibly melanoma or sarcoma.  The doctor stated that the markers often overlap,

I have been waiting for the results and they are being sent out again. Currently I am being treated for Stage 4 melanomia due to the orignal markers/stains.  Ipilimumab/Nivolumab based upon doctors best educated guess.  He feels that the melanoma got into the bloodstream and found a spot to reside in the soft tissue.

The doctor stated that sarcoma can be treated with the same treatment plan, but there is not enough research and that chemo is added.  Waiting for next lab result in about three weeks.

Questions:

Has anyone expereinced the time lapse in what exact beast I am fighting?

Has anyone had the markers come back with not knowing which one it is?

Thoughts, recommendations and prayers welcome!

Hanlon

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smiller's picture
Replies 6
Last reply 4/9/2019 - 8:16pm

  June will mark two years since my husband had to stop odivo/yervoy treatment because of side effects.  Latest scan shows stable nodule in left adrenal gland. From where he started this is great news. Dr. says he can wait six months now next scan. I was holding my breath for this report since he hasn't received treatment of any kind for almost two years.

CT scan also shows a small abdominal aortic aneurysm that they will keep an eye on,  

 Yes NED would be great but from so many stories I read here----we are blessed!

Thanks to all for your compassion and sound advice.

Jim's wife

 

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Nympha's picture
Replies 8
Last reply 4/13/2019 - 10:11am

Hello all,
my father is IV stage, taking Tafinlar/Mekinist treatment with great results.. After two weeks of treatment with no side effects, he is lying in the hospital with unstoppable fevers..
Doctors say it's not due to treatment according to the blood results (however this treatment can cause fevers very often)
He was off treatment for a week, but fevers continued..
He is having 38 °C - 38,5°C fevers everyday for 2 weeks..
Is there anybody with similar experience? What can cause it?
All blood results ok, ct ok..
He is so exhausted, lose weight and strength. . He doesn't want to eat.. We are hopeless..

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Replies by: Bubbles, ed williams, unicornsnow, QuietPoet, Anonymous, Indymom

Hello,

So I'm new to the website and the board.  I was diagnosed last week with melanoma after my biopsy came back.  I have an appointment with a surgeon next week.  I have some questions and I'm hoping someone can answer them.  I noticed for awhile (probably a month or more) before my dermatologist appointment that I have been bruising a lot more lately.  I'm really pale and I do bruise easy.  But it'll be from something like my husband taking my wrist to pull me out of the way of a crowd.  Or I wake up with bruises when nothing has happened.  I'm worried that it could mean that this fast growing melanoma could be worse then what they are thinking it is.  Does anyone know about this? 

Side note, my dermatologist has been seeing me for a few years and took a spot off of my shoulder 2 years ago that was showing signs, but was taken off before it turned into something bad.  This new spot turned from nothing to something in less than 9 months.  I'm super worried and I don't want to worry my husband more than he already is.

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Gwenspain's picture
Replies 7
Last reply 4/22/2019 - 11:16pm

Inoperable primary desmoplastic melanoma in my skull.  Next week the specialist will try to match me with a clinical trial.  The available clinical literature indicates that DM responds well to immunotherapy. It also tells me that if immunotherapy does not work then I have a short time left, weeks or months rather than years.

Yesterday was the first day that I have actually felt unwell since the diagnosis 3 weeks ago. I am wondering now if it is realistic to think I might continue working during immunotherapy?  It is difficult to try to decide when to start taking a leave of absence from my job. How long should I push myself to work? Should I go ahead now and start burning through my leave time?  I am eligible for an unpaid medical leave of absence, but I'm not sure I can afford it.

I don't know anyone who has been through this particular type of melanoma.  Lots of people with breast cancer or colon cancer or even skin cancer and other types of melanoma are around here, but of course I have to be different!

Is there anyone out there who might have some insight for me?

 

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mortalMike's picture
Replies 4
Last reply 4/12/2019 - 10:26pm

Got some updates. I was a month late starting my Opdivo. Had to recover from heart attack after finding out that it cost 15 grand a wack not including the labs and Dr. appointment. I was finally assured that Medicare and my insurance would cover it ALL. We will see.. Got my first infusion 3/29/2019. So far I don’t feel anything. I don’t know what’s going on in my insides but I dont feel any different so far.
I'm scheduled for my 2nd infusion on 4/26/2019 and follow that with CT scans on 5/5/2019. I'm getting all this done at the Moffitt Center in Tampa. What a great place and great people.

My melanoma was found on my chest and cut out along with 2 lymph nodes on 11/7/2018. Mine was the infamous nodular melanoma. Scans and biopsy were done and everything were clear. My scar look like crap to me but everybody keeps saying it looks good. I went to Moffitt to get in a "program" and be treated by mel experts. I keep going to my dermatologist. In Dec. 2018 I had 3 biopsy done, 1 came back nothing, 1 on my back was superficial well differtiated squamous cell carcinoma and 1 on my shoulder was micronodular basal cell carcinoma. The dermatologist, according to "procedure", scraped these 2 deeper.
My Dr. at Moffitt said he wanted me to see their cutter. I did and he said we should wait watch and see. OK. The micronodular thing bothers me but the surgeon said to wait and see.

That brings me up to the present.
Anybody see any red flags in any of this? I’m not naive and think I got 1 certified melanoma and think that’s it. That’s why I took ya’lls advice and started Opdivo.

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/7/2019 - 10:08am
Replies by: Gene_S, mortalMike, ourvan

just had surgery 2 days ago to remove melanoma. How How long does it usually take to hear back from the pathology to make sure the margins are clear? 

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RichInLife2's picture
Replies 7
Last reply 4/16/2019 - 9:50am

My next side effect from Nivolumab turns out to be colitis. I had grade 1 or 2 diarrhea for about a week. Lab found leukocytes but nothing else in my stool so I was put on prednisone prior to what would have been my 9th treatment. That didn’t keep it in check so when I went to see my oncologist this time, he switched me to prednisone, a 25-day tapered course. So far, after two days, that seems to be working — no movement of any kind so far. I’ve also started gaining back some of the weight that I lost, which is good. 

The not-so-good is that I’ve been taken off Nivolumab completely. Funny, I chose not to go with the Ipi/Nivo combo because I was wary of the side effects and here I get diabetes and colitis from Nivo monotherapy, with my thyroid hanging on by a thread. As my brother said, I should be scratching lottery tickets if I’m hitting those kinds of odds. 

Losing the Nivo was an emotional blow. I feel like I’ve had a life preserver yanked away from me. I’m not Braf positive and my side effects probably disqualify me from most trials. I just have to hope that the Nivo did its job. 

I was stable on my last scans and the doc isn’t sure if I have any active tumors remaining. I’m getting a pet scan and an MRI next month (if the insurance company approves) and hopefully I’ll get the all clear then. If not, I’m not sure what I’ll do. 

 

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sing123's picture
Replies 5
Last reply 4/6/2019 - 7:51pm

Dearest ones,

Yesterday marks my one year anniversary since diagnosis. A day before that when I went for my dermotology check the physician's assistant told me that I would either get results that would give me great relief or be very, very bad. 

Heart in mouth, I got THAT news. 

And yet, a year of gratitude.  As a Stage IIIC diagnosed in April 2018, I was eligible for the Opdivo that had just been made newly available to Stage IIIs I think in December 2017? I had a recurrence and had it removed. I had some side effects and they were manageable. I was able to work which felt like normalcy.

I had solid, solid support. From work, from loved ones, from you all. 

And in the year I found out I had melanoma, I reconnected with my love to be, whom I'd met a million years ago (well, 20). Melanoma terrified me, but it didn't scare him. And now we are planning a wedding. 

I am still skittish. I still hug my children too tight. I am still waiting for the other shoe to drop, especially with my next PET scan date and results approaching.  

But as Oscar Wilde said, "We are all in the gutter. Some of us are looking at the stars." I am still looking up at those stars, full of awe and wonder at this life. 

 

 

 

 

Cindy

Diagnosed April 2018; Stage IIIc; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; continuing on Opdivo, finished Opdivo in March 2019

I'm Still Here!!!

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Shannon39's picture
Replies 2
Last reply 4/5/2019 - 7:16pm
Replies by: Edwin, KellyH

Hello,
I have been on dabrafenib and trametinib for 5 months now and have been taken off due to side effects. My liver enzymes are way too high that I have been off the drug more than I have taken it over the last 5 months. Dose has been lowest possible and my liver was still quite unhappy. My oncologist is now going to try me on Opdivo. Has this happened to anyone else? I have read a lot on here about Opdivo and am quite worried about some of the side effects such as thyroid problems, diabetes and colitis. Right now I am 3A and am taking these meds to help prevent a recurrence. Wondering if watch and wait might be an option. Just weighing my options. Suggestions, thoughts?
Thanks,
Shannon

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/10/2019 - 12:30pm

Hello all,

Firstly, sending healing hugs to you all battling MM.

I am a newbie, and cannot seem to find the answers and feel very alone.  

I have this playing on my mind, my report stated I had regression, I asked the question to my skin nurse (I don’t have a dermatologist) my path report showed 0.06 and I asked if it was good or bad?  The response I got was this

‘uncertain, but most think probably good overall.  It was virtually the same thickness as the melanoma anyway in this case’

Well I have it in my head that regression indicates a poorer prognosis, does anyone have knowledge of regression and does it mean likelihood of a reoccurence?.

i am sorry to post a trivial question, I just cannot find the answer...

love from a big worrier

 

mandy

MLD

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zimmy's picture
Replies 24
Last reply 5/13/2019 - 11:14pm

This is my first time posting. My husband was diagnosed with melanoma in July 2015. He had wide margin excession with a clear SNL. Last year he had a lump appear under left armpit  and it was melanoma. He had 19 lymphnodes removed and began immunotherapy.. but it did not work. He has a wonderful Melanoma specialist!  He is BRAF positive and has begun BRAFTOVI/MEKTOVI  this past February. He did great with no side effects the first month and a half, but has begun to have abdominal pain which she said  is one of the common side effects of this drug. She had him get off of the pills for 4 days, and then dosed him down 2 weeks ago to see if this would relieve some of the abdominal pain. She told us to try Ibuprophen and also gave him pain medicine to try. Of course we would rather not have to rely on either of these due to the obvious.  I realize this version of targeted therapy is new..coming out summer of 2018? Just wondering if anyone has experienced abdominal pain while on targeted therapy, and if so what did you do to help? I really appreciate any advice!  

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