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.

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stevek1959x's picture
Replies 10
Last reply 5/18/2018 - 9:10am

So the big day is this Wednesday for starting Opdivo as an adjuvant treatment.  My onco said 12 monthly treatments.  Whoa!!!  Thanks to the folks on this board I said maybe I should learn to walk before I run so I suggested starting with the 2 week treatment.  I did not get any pushback at all but I was surprised they were moving new patients to the 4 week treatment right away.  Meanwhile, I still have my drain in from the lymph node dissection (3 weeks).  My onco said no problem that the treatment could start with the drain in.  They want me to see a PT/Lymphedema specialist but I thought I should hold off until this drain is gone - right?  One of the nurses said it was almost a for sure event that I would be on thyroid  medication as a result of the Opdivo.  Is this what everyone is experiencing. 

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Raco's picture
Replies 2
Last reply 5/15/2018 - 12:39pm
Replies by: Raco, dessie

My last appointment which was on 5/3/18 and I told my Oncologyst that I was having a little shortness of breath when I was doing light chores.  He suggested I get an X-Ray which I did last week. 

Had my chest e-ray end of last week because of shortness of breath. Results today 5/14 which says

Impression: No evidence for acute cardiopulmonary process.

I go back for my 4th Opdivo treatment 5/17/18 and im sure the Dr will go over the results.

Question: has anyone else experienced shortness of breath and if so, what was causing it as it seems like my results were clear.

your input would be appreciated.

RACO

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Jlpendley's picture
Replies 4
Last reply 5/16/2018 - 12:14am
Replies by: budeny, Jlpendley, KellyH, Janner

My husband had a mole removed from his back that grew quickly I think it was bleeding and scabby. I am not sure if it was an existing mole he had for years or a new mole. Its seemed to happen so quickly.  It came back as melanoma.  I instantly went on the internet to look up information and now I'm paralyzed with fear.  He has an appointment with the sergeon on Wednesday and his dermotologist said he may remove more of the area around it.  That is all the information he was given except that he will have to go back to the dermotolgist for 3 month visits. I'm so afraid that the doctor on Wednesday is going to say he is stage 4 and only has about 6 months to live, like some of the stories i have read on the internet. 

Jennifer pendley

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cjm22's picture
Replies 2
Last reply 5/15/2018 - 2:30pm

Like many of you said, my fiance has done a lot better on the new taf/mek drugs. It's been almost a month now and he is entirely off pain medication (he had previously been on a fentanyl patch!!).

Things got scary for a while. We had a palliative nurse visit our home, and we had home oxygen set up, and he'd basically stopped eating and couldn't get out of bed. It was scary. Within 2 weeks of starting taf/mek he was off the home oxygen, and a week after that he was off the painkillers. He's still dealing with a lot of fatigue and weakness after a really hard 3 months (craniotomy, time in ICU, major breathing issues etc.), but he is finally getting back to normal. And we're getting married in 3 weeks!

He hasn't had any scans since his last time in the hospital about 3 weeks ago, which was just intense bad news as the melanoma cancer had grown and spread significantly everywhere and was preventing him from breathing. He is feeling much better now, so we're confident the next scans in June will go well.

But we also know that taf/mek is likely just a temporary measure, especially considering the extent of his disease before starting treatment. 

At what point do we bring up with our oncologist that we'd like to try ipi/nivo again? When do we make that switch? He had just one ipi/nivo infusion, but was hospitalized one week later with breathing issues. That's when the docs spotted the lymphangitic carcinomatosis (a type of lung metastasis progression) and decided to switch him to taf/mek -- so 10 days after first ipi/nivo infusion, he started taf/mek. To be clear, he wasn't switched off ipi/nivo due to side effects, but rather because the cancer had progressed so quickly that the oncologist wanted him on something faster-acting. (The little I read said that more than 50% of patients with lymphangitic carcinomatosis die within 3 months. It's more common in lung/breast/colon cancer patients than melanoma.)

So what should we do next? Other than get married!! :)

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kentuckycat's picture
Replies 3
Last reply 5/14/2018 - 5:57pm

Happy Mother's Day to all the mothers out there!

I am looking for opinions on treatment options and questions I should ask my oncologist before setting up a plan.  I was diagnosed stage 3C in 2013.  Was in a trial for ipi vs inteferon and got the ipi arm.  Completed the trial of 1 year of ipi at 3mg and then had intransit mets.  Surgically remved the mets and did watch and wait until 2016 got more intransit mets.  Started Keytruda and met kept growing so had it surgically removed, but continued Keytruda.  Had a total of 14 Keytruda infusions and developed severe knee swelling and stiffness as well as high liver counts so discontinued Keytruda and took steroids.  Have been stable since the surgery about 20 months ago.  Have not had any treatment for a year and been off steroids for 5 months.  

My latest scan showed an increase in the size of a lymph node in my abdomen from about 7mm to 21mm.  I will be getting it biopsied, but my oncologist already has me set up to meet with a surgeon as he is pretty sure this is a recurrence.  His initial thinking is surgically remove the lymph node and then start nivo.  The last tumor tested was braf positive.  My first question is assuming a positive node, should I have surgery or leave it in and see if treatment with shrink it?  I do think I likely need systemic treatment again, but which option? Should I get targeted treatment, go back on a pd-1 or go aggressive with ipi/nivo?  I am also currently researching clinical trials.  Any other thoughts?  Thanks in advance.    

 

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Sharon93065's picture
Replies 5
Last reply 5/14/2018 - 9:42pm

First of all, thank all of  you who post your helpful suggestions.  Celeste, Jennifer (two of you) Ed, Mike, So Ca Julie, and all of you, too many to mention who are helping me on my journey.

State 4 metastatic melanoma, i think 2017 was a fog for  me.  With initial diagnosis, the the brain fog the prednisone gave me, rashes, thyroid - oh just everything.

I don't post often i just read.  I see Dr on 5/21 to get 5th petscan results. But he called and said everything looked good.  6 tumors including lung mass, pretty  much gone!  3rd brain MRI showed the two less than half inch dots still sthe same. 

I had to cancel my Paris Viking River cruise last Nov. BUT in two weeks going on a 10 day Alaska cruise r/t  San Francisco with 11 of my family on Grand Princess.  Thank you God!  I still get a LOT of fatigue, and having problems following thru on projects.  But feel better that months ago.  I have been to Alaska before so i am content being low key and watching scenery from balcony while youngsters do all the excursions i laready have done.  My children grandchildren have all taken off of work/college because of grandmas melanoma.  This trip was on my bucket list...every once in a while where I just don't feel good, I say "ok Lord, let me get thru this trip."

​The arthritis keeps me still, so i try to make myself walk the dog a llittle, even around a short block, or so gentle water aerobics when weather permits.

​I applaud you young people going thru this, and still raising children and holding down jobs.  God Bless you

Again, that you for sharing what you have been going thru...it helps the rest of us.

Happy Mothers Day!!

Sharon l

 

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daughter1's picture
Replies 4
Last reply 5/13/2018 - 4:03pm

Its not a good Mothers Day.  I am overwhelmed with sadness.   Mom rushed back to the hospital with pancreatitis flair up.   Seems as if that we conclude now that at this point she will flair up if she if prednisone because as she titrates off, she flairs up something fierce.  Dr. has already decided that she has to stop her Opdivo.  She was doing so well on it for almost a whole year and then this about 6 weeks ago we rushed her to the hospital for this pain.  Steroids help almost immediately.  But now what?  I am so scared and sad.   This is terrible.  I guess we will know more this week when she meets with a specialist.  Does anyone have any experience with this happening?  He won't put her on the Opdivo ever again will he?  What happens now?  

 

Robin

 

 

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MelanomaMike's picture
Replies 12
Last reply 5/17/2018 - 11:57pm

Hi Family, well, as i stated, i started my first round of Ipi & Nivo yesterday 5/11/18 and so far so good, today im experiancing minor aches, pretty much my legs, mild, a bit "run down" but thats to be expected soon after a dose at the Juice Bar.After my last bag of Pembro {#7} my legs began to swell & knees where achy, i was prescribed Naproxine & man ol' man! that stuff is amazing for not being a narcotic, thank god cuz it was out of control with the achyness... I pray this Ipi/Nivo works {Pembro did not} cuz somethings gotta give, i need some good news right about now!

 Okay, now my question, can any one give me 1 good reason some folks here at MRF choose to be Anonymous? i dont  reply to them cuz i dont know which Anonymous im replying to..Please better inform me, im a little taken back by this choice....

 Anyways, to all my extended family {Anonymous'es included} be well, keep an animal {or 2} near you at all times, as well as  humor & music close by, it works for me....Mike

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JW's picture
Replies 1
Last reply 5/12/2018 - 6:54pm
Replies by: Coragirl

Just thought I'd post what's going on with my husband in case someone finds it helpful.

We went to MD Anderson, and our experience there was entirely different from the local oncologist and even from the melanoma specialist at UT Southwestern.  

The docs at MDA have current patients who have been living 5+ years with anal/rectal melanoma.  They have operated on 18 cases so far this year, and they were seeing two follow-up patients the same day were were there.  We definitely felt we were in much better hands.  They had a clear treatment plans, including plans for the various contingencies.

Since the PET/CT was inconclusive as to whether there was residual cancer, the surgeon did an exam under anethesia and found that there was in fact tumor present.  Due to the location of the tumor, it can not be removed without compromising bowel function.  

So, the plan is to use chemotherapy plus immunotherapy to shrink the tumor and then remove it.  Apparently mucosal melanoma does respond to chemo, unlike cutaneous melanoma.  They are using a combination of 3 chemo drugs and Keytruda.  Keytruda was initially denied by our insurance, but a phone call from the doctor got the denial overturned.

There will be 2 round of chemo, 3 weeks apart.  Each round will consist of 4-hour infusions 4 days in a row.

3 weeks after the second round, the surgeon will do another exam to determine if the tumor has shrunk enough.  He says 2 rounds is almost always enough in his experience.  Then there will be an MRI of the pelvis to help determine the specific plan of surgery.  Surgery will include removing the tumor plus as much margin as possible, as well as removing the sentinel lymph node and possibly additional lympth nodes.

After surgery, there will be radiation and then a year of Keytruda.  If Keytruda doesn't work or stops working, there will be testing for c-Kit mutation (the tumor has already tested BRAF negative).

I hope this info will be helpful to someone at some point.  

(Background:  my husband initially had surgery to remove what was supposed to be an anal polyp, but turned out to be 3 melanoma tumors.  The surgeon -- who was understandably not expecting melanoma -- removed all the tumor that he could see but was not able to get any kind of margin.  Local oncologist ordered PET/CT which showed activity that could be residual cancer or perhaps just post-surgical inflammation.  He recommended going back to the orginal surgeon to "take out whatever else looks like cancer."  What???  Melanoma specialist at UTSW recommended against that, of course.  There is a surgeon at UTSW who has some experience with this type of tumor, but we decided to go with the even more experienced docs at MDA.)

 

JW

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Ohio mom's picture
Replies 3
Last reply 5/12/2018 - 5:06pm

Hello,

First, thank again to all of you.  I hope that I can be of comfort and “some” knowledge to future posters as I begin to learn more about this cancer.

im sorry this is so, so long but I am hoping someone can help me get answers to all this verbiage.  A long weekend is hard to wait to try to get answers from the Dr.  so if anyone can help me-it would be greatly appreciated.  Compared to my first pathology report, this one has so much info and I know so little that it’s frustrating and scary.

As I stated, I had a shaved biopsy that came back as malignant melanoma-superficial melanoma of my upper arm-left anterior distal.  This was the report.

Breslow thickness-0.5mm

ulceration-not present

regression-not present

mitotic rate-<1 per mm2 (none present)

L/P/A/I-not identified

tumor infilitrating lympocytes-brisk

Associated melanoctytic nevus-not present

deep margin-involved

peripheal margin-involved

Stage-at least T1aNxMx

Next appointment was with a surgical onocologist for a deep punch biopsy and they state that I have caught it early and after I stated I thought I should have a sentinel node biopsy, he thought it was unnecessary.

i kept waiting for my test results.  And called the center, which is huge and busy and finally messaged them and found out my results were not in, but would go ahead with the wide excision surgery.

next appointment-one week and a few days later after punch biopsy, I am at the surgical center and the Dr had to call the pathologist for the results which they stated had no residual signs of melanoma present.

so I have the surgical procedure done and then the next day I ask for my pathology report and it states that this is what they have concluded from my FIRST biopsy, not the punch whole biopsy from the surgical onocologist.

this is from the slides of the shaved biopsy from the dermatologist and their interpretation.

if you could help me understand this before I meet with the surgical oncologist in 2 weeks, (I hope to talk to him sooner) I would greatly appreciate it.

microscopic examination:

Sections of specimen A show skin excised to include subcutaneous tissue.  Near the center of the specimen, Reyes are effaced with organizing granulation tissue and a patchy chronic inflammatory infiltrate in the underlying dermis.  Adjacent to this area, individual and nested atypical melanocytes are present at the dermal-epidermal junction.  Scattered atypical melanocytes are present above the basement membrane.  A prominent chronic inflamatory infiltrate is presentbin the dermis and makes identification of any possible invasive component to this lesion difficult on hematoxylinand eosin-stained sections.  Immunoperixidase staining for HMB-45 is positive for melanocytes at the dermal-epidermal junction, above the basement membrane and Fox ally in adnexal stuctures.  Rare HMB-45 positive cells are present in the superficial dermis.

Immunoperoxidase staining for Melan-A and Ki-67 was performed on a single slide cut from block A1.  Melan-A is positive for individual and nested melanocytes at the dermal-epidermal junction, above the basement membrane and in adnexal structures.  Some background staining is present in the dermis; however, a few melanocytes are present in the inflamed dermis.  Immunoperoxidase staining for Ki-67 is positive for the nuclei of basilar keratinocytes as an internal control.  Many of the Mela-A positive cells at the dermal-epidermal junction coexpress Ki-67.  Occasional Melan-A positive cells in the dermis also stain positive for Ki-67.

 

Synoptic report:

malignant melanoma

type-compatiable with superficial melanoma

breadth (diameter of lesion) not given

level of invadionClark’s level II-early III

depth of invasion-0.7mm

radial growth phase-not identified

mitotic count-0/mm2

regression-not identified

precursor lesion-not identified

Blood vessel, lymphatic and neural invasion-not identified.

tumor infiltrating lymphocytes: present; brisk

satellite nodule-not identified

margins- the in situ component of this lesion extends to the lateral specimen borders. Melanocytes in the dermis extend to within approximately 4.5mm from the biopsy base.

AJCC pT1a stage lesion

final evaluation of this lesion with respect to prognostic factors would require histology evaluation of the completely excised lesion.

complete excision of this lesion is recommended.

 

Thank you for taking the time to read this.  I don’t take your time and effort for granted.

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Anonymous's picture
Anonymous
Replies 10
Last reply 5/18/2018 - 12:36pm

My 17 year old son was diagnosed in February 2018 with 2.4mm malignant melanoma tumor when he had a mole removed from his scalp. We have since been through the surgical process, WLE, positive sentinel node biopsy for microscopic melanoma metastasis, and just last week he had his parotid gland removed and a neck dissection. We are awaiting the pathology results from surgery and we will be starting adjuvant immunotherapy, Opdivo infusions, regardless of the results in the next couple weeks. We are Stage 3, but no  subclass yet, pending the surgical pathology reports. I am not a fan of the “wait and watch” approachand I feel the benefits of the immunotherapy definitely outcweigh the risks at this point. He is young and otherwise healthy and I am praying that will work in his favor.  I am a nurse, a neonatal nurse. That is the farthest thing from an oncology nurse. I have submerged myself in research and have read and learned more about melanoma then I ever thought possible.  I have read good and bad, and no matter what I read I find myself just completely overwhelmed at times. My son definitely handles this better than I do. He is a great patient and he amazes me everyday with his strength...one week post op and he is already ready to be back playing sports and leading a normal teenage life... The surgeon is confident with treatment my sons prognosis is “excellent” the oncology team is much more cautious when speaking with us.  I just need to know I am making the right decisions for my child. 

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Anonymous's picture
Replies 1
Last reply 5/12/2018 - 1:06pm
Replies by: Janner

Hi

i am wondering if anyone can help me out here with their knowledge or experience. I started using tretinoin - prescription retin a at the start of march. Within the first week I developed a Papule of sorts that came up just under my collarbone near my shoulder right next to a liver spot I've had for a few years. 

 

I have an an appointment this week to see a GP that specialises in Dem who will refer me on if need be (im in the U.K. But grew up in Australia). The spot has been there for 8 weeks now as it appeared with no change. It is pink feels scaly especially after shower and about 5 mm. It literally appeared overnight and I noticed it straight away as I am vigilant with my skin. I waited the 4 weeks, its hasn't gone so made an appointment which brings me to this week(long waits uk). Being next to a liver spot I guess that makes it a sun damaged area of skin, as only other place I have liver spots are my legs. 

 

My initial thought is it is an actinic keratosis which the retain a has unmasked but now I am seriously freaking out that it instead an amelonitic melanoma and I've let it go for 8 weeks since it surfaced. I can't find much information on amelonitc melanoma online, it basically says there's no symptoms and it could just be that slight raised red splotch as that is how they present. 

Just to clarify there's no nodule it's a slightly raised papule, not itchy, not bleeding just causing me to cry every Time I look at my young children :(.

 

anyone have any insight or experience? 

 

Thankyou for your time

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Hi! I’ve introduced myself a long term ago, but here I am again! Originally diagnosed stage 3C in 2013. Had a recurrence in 2015. Just had a biopsy this week and the results are confusing even my oncologist. A biopsy was done of a lymph node that lit up on my last PET scan. The tissue showed no melanoma, but it DID show plasma cells, which he said do NOT belong in my lymph nodes. Does anyone have any information about this? I’ve never even heard of plasma cells. To give you some more info, my recurrence was never 100% determined to be melanoma. All they could say was that I had malignant spindle cells that made up the tumor.

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lwhaley94's picture
Replies 5
Last reply 5/29/2018 - 1:14am

Hi, first time poster here.  I was diagnosed with melanoma on my scalp in September.  Results of lymph nodes were clear, no evidence of spreading.  Stage 1b.  Great news!

I have lumps under the skin on my arms for a long time and I worry that they are melanoma recurring.  I have received lots of information about what kind of moles to look for, but not much on what to "feel" for.  Any advice?  Is it my primary care doctor that I should be asking about this?  My dermatologist just looks at the surface, she doesn't feel anything.

I know I have had good news and I am very thankful, but I am cognizant of the possibility of spreading inside and wondering if these lumps could be something.

Lori Whaley

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Raco's picture
Replies 2
Last reply 5/17/2018 - 9:16am
Replies by: Raco, Bubbles

Hi, just got my BRAF results, I logged into my care plus to see lab results and it said the following.

BRAF gene mutation results::  Mutation Not Detected

Lab Comments:
SV18-841 A1 Microdissection Sentinel Lymph Node, left deep axilla Previous Diagnosis: Metastatic Melanoma

So I see my Oncologist next Thursday May 17, 2018 for my 4th opdivo treatment.                                        Will this BRAF result change anything for treatment??

Thanks to all for helping me understand.

Robbie

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