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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Jess24lynn's picture
Replies 1
Last reply 11/19/2019 - 4:36pm
Replies by: JudiAU

Hello,

3 years ago I had a punch biopsy done on a mole on my big toe. The results were mildly dysplastic but had positive margins. There was repigmentation in the area within about 6 months. I just went back to the dermatologist last week, they said it hasn’t changed since the last time they took a picture of it, which was probably 1 year post biopsy. The dr wants to excise the rest of it just to be safe but I am freaking out. It’s been 3 years, this could have changed into melanoma by now. I would appreciate anyone input on this situation as I’m terrified.

Thank you,
Jessica

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Replies by: sks2019, MelMel, Hukill, Anonymous

Hello,

So my grandmother is stage 4 (as many of you may know). She received 2 ipi/nivo combination treatments and all tumors shrunk. After the second infusion, she began with colitis - on September 9th. She has been on predisone since (60mg-10mg) but every time they try to taper her - she has a flare up. So, for now she is on 40mg and stable.

She received two infusions of remicade - to no avail. They have now switched her to Antivo (and she will get her second treatment tomorrow). We are hoping it will work so we can get her off the steroids SOON!

The doctor at MSK says she may not need more ipi/nivo and "maybe she got enough."

However, I thought protocol was to continue with the nivo for 2 years?

Any insight into steroids and effect on cancer or ongoing immunotherapy?

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Bobman's picture
Replies 7
Last reply 11/19/2019 - 6:18pm
Replies by: JudiAU, Bobman, Bubbles, MelMel, SOLE

Hey everyone. Moh's went well last week on the tragus. A bit of reconstruction to rebuild, and make it look pretty normal actually. Is healing good. Had four biopsies at the same time, and two came back melanoma. That's 14 total now for me. Took the wind out of my sails a bit on that news. Setting new records everywhere I go. Still feisty.

Bob

We are one.

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FurMama311's picture
Replies 6
Last reply 11/19/2019 - 6:37pm
Replies by: FurMama311, Becky, JudiAU

Hello everyone!
I have been reading the posts on this forum for a few weeks after I got a call back from my dermatologist suspecting that I may have a melanoma.
I am 31, female and have lots of moles pretty much all over my entire body. I am extremely fair skinned, have really light blue/gray eyes, ash blonde hair and always burn in the sun.. Sun protection was never a huge deal when I was growing up-even after my grandmother had almost half her face cut off with Basal Cell Cancer...They all tan so easily and never got burnt so my parents just didn't understand why I always burned, nor did they really do anything to prevent it. I've probably had sun poisoning about 8 times in my life. Last year I ended up with 3rd degree burns from the sun all over my top half of my body and one leg(i used sunscreen in the spray form 3 times over a 3 hour period). On that leg, on my thigh, about 3 years prior a small pink freckle appeared. Well over the last 10 months it morphed into the size of a pink pencil eraser from a #2 pencil that had been used about half the way down. I used tanning beds off and on from about 16-25. I finally got insurance by becoming full time as my job and made a slew of appointments to get caught up and seen by several types of doctors. I went to the ER with my sunburn last year and the ER physician told me I needed to follow up with a Dermatologist ASAP, and that I would likely end up with skin cancer. Well it wasn't really an option and I didn't pay much mind to it, as I've said, I've had multiple severe burns my entire life, blisters and all!
10/18 was the biopsy
10/21 I got the call from the derm about suspecting melanoma and a FISH analysis was requested. They called it an Atypical Spitzoid
11/18 I had my follow up about the results from my FISH analysis. I will provide the report below. My derm said I should have a WLE, but was unsure because of the "unknown gray area" that is atypical spitzoid, whether a SLNB should be performed and left it up to me. I guess I would just like some outside opinions on if I should go through with the SLNB or not. She said she would give me a referral to Dr. Delman at the Winship Emory if I wanted to see about having it done. She said he specializes in the unknown and weird types. She also said she could not provide me with any statistics on how people with these fare later down the road with or without the SLNB due to lack of studies and evidence as these aren't very common, rare even. She said she really didn't have a definitive answer on if it was, or was not or could be at a later time, a melanoma.
This is the Dermatopathology Report on my FISH analysis.

RESULTS:
A. Skin, Right Anterior Distal Thigh, Biopsy by Shave Method.
ATYPICAL COMPOUND MELANOCYTIC NEOPLASM WITH SPINDLE AND EPITHELIOD CELLS
(see description and comment)
THE DEEP AND ONE LATERAL SECTION EDGES ARE INVOLVED

COMMENT:
Overall the histologic changers are those of a compound melanocytic neoplasm with spindle and epithelioid cells and some atypical features, including the clinical situation. The histologic finding, immunostaining pattern, and FISH results favor an atypical compound spitzoid neoplasm but the differential would also include a spitzoid melanoma with a Breslow depth of 0.8 mm, at least. Therefore a conservative excision is recommended to ensure complete removal and allow further diagnostic evaluation.

Due to the complex nature of this neoplasm and consideration for a possible spitzoid melanoma, this specimen was sent to NeoGenomics for FISH studies. The reported finding within normal limits for RREB1, cMYC, CDKN2A/p16, and CCND1. The full report is on file and available for review upon request.

Stain Results
Ki-67: Positive
Melan-A: Positive
P16: Positive
SOX-10: Positive

SPECIMEN DESCRIPTION:
Gross Description
A. The specimen is received in 10% buffered formalin, labeled with anatomic site, patient's DOB, patient's name, and unit number
It is given an accession number. It consists of a portion of tan skin measuring 1.0 x .6 x .2 cm. It is sectioned in 3 pieces. The specimen is submitted in toto in 1 cassette: a-1 (3)

Microscopic Description
A. Sections show skin with hyperkeratosis, and acanthosis of the epidermis. In the epidermis and dermis there is a proliferation of epithelioid and spindle cells distributed predominately as dyscohesive nests at the dermal-epidermal junction and in the papillary and reticular dermis. The melanocyter are large, with abundant amphophilic cytoplasm and prominent nucleoli. The nest and cells mature with increasing dermal depth although some nuclei are hyperchromatic and pleomorphic. Occasional eosinophilic globoid (Kamino) bodies are noted in the epidermis and superficial dermis. The neoplasm appears well circumscribed but is asymmetrical overall. Immunostains for melan-A and SOX10 confirm the distribution of melanocytes in the lesion with p16 displays preserved staining of the dermal melanocytes. Ki-67 reveals a low proliferative index.

Clinical Information
Impression History
a. Rule-out Dysplastic Nevus Vs. Dermatofibroma vs. Basal cell carcinoma, Morphology: Erythematous scaling verrucous papule, Biopsy by Shave Method.

End.

So! Anyways, since I have seen all sorts of stuff on this forum, with tons of experience... I just thought I would reach out and see if I could gather an opinion of if I should have the SLNB when I have the WLE. She said that if I chose to not have the SLNB that it would be an in office procedure and I would not be put to sleep- but that she would give me some nerve meds while I was there and send me home with some pain meds for a few days afterwards. If I do go through with the SLNB, I would be put to sleep and they would do both procedures at that time.

Thanks for being so patient, and taking the time to get through all the details. I appreciate you!
-Brittney

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jjk17's picture
Replies 5
Last reply 11/19/2019 - 9:46pm
Replies by: DoubleTT, jjk17, MelMel, tedtell1

Hey all!

Just seeking some guidance from anyone on here who may have experienced this.... I have been in remission for two years now.

A couple months ago after doing a self exam I noticed a lump on my breast that felt deep. I knew that I had a dermatology appointment coming up so I would have them check it. They wanted me to go ahead and get further testing. I am having a mammogram and ultra sound this Wednesday and I am a nervous wreck. I know the possibilities are endless, but I am having a hard time with this...

Any advice would be greatly appreciated.

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DoubleTT's picture
Replies 6
Last reply 11/19/2019 - 10:21am
Replies by: DoubleTT, JudiAU, MelMel, Bubbles

Cant see the Oncology Ophthalmologist at Princess Margaret Cancer Centre until this coming Friday. They did say if vision goes blurry show up at the emergency centre within the centre. Have any of you had this? Its awful and I only just finished the Opdivo 40 days ago. More joint pain than ever and now this. Scans were stable so that's good. But been reading possible uveitis etc...????
thanks for any knowledge...Tracey

Double TT- Toronto Canada

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Anonymous's picture
Anonymous
Replies 10
Last reply 11/19/2019 - 8:58am
Replies by: caitkastrati, gopher38, BrianP, studiodad, Anonymous, Bubbles

My husband was diagnosed with melanoma stage 3 at the end of September. He found a small lump in his armpit while getting a shower. Once removed they determined it was melanoma. He doesn’t have a primary site. This diagnosis really creeped up on us. It has been a very emotional few months! We just welcomed our baby girl in the world and are hoping/praying that he will cancer free to see her grow up!!

Full lymph dissection under left arm. 2/14 lymph node came back positive for melanoma. No known primary. BRAF results were positive. Starting treatment in 2 weeks.

My big question is what treatment options is better when BRAF positive? The oncologist discussed two options immunotherapy once a month for a year OR take a pill (forget the name) if BRAF positive. She said he can do one or the other. When weighing the options she said that he can do immunotherapy if he is BRAF positive or negative. The pill is only if you have BRAF.

Does anyone have experience with these treatment options? Which one works better with BRAF?

Thank you in advance for your help!

Caitlin

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gopher38's picture
Replies 4
Last reply 11/17/2019 - 6:16pm

Hello,

Another one of these "Anyone else seen this?" posts. My mind is always picking at the "melanoma scar" like everyone else.

So, I did a year of Opdivo from Feb 2018 to Feb 2019. Had maybe a bit of a rash in the beginning, but very minor. Main side effect was shortness of breath and dry mouth. In Sept, they found distant spread of melanoma on the skin, so classified stage 4 and prescribed the combo, which I started about 2 weeks ago. Here's the question though. About a month before I started the combo, and about six months after having ended opdivo treatment, I started getting a rash (not "serious", but pronounced) on the torso front and back, accompanied by some, but not horrible itching. It looks very similar to some of the pictures I've seen of the rash that opdivo can produce, but it was six months after the end of opdivo, and - as far as rashes go - it was much more pronounced than anything I experienced DURING opdivo treatment. Seemed weird to me. My doctor too, because was asking all the "have you changed detergent" type questions. I've now since started the combo, and that has ratcheted the rash up a bit (pretty much all over front and back now), but especially the itching, which is strong on torso and limbs. I know that rash and itching is pretty common with Yervoy, and I'm hoping that it doesn't get so bad that they have to stop it. The thing I'm trying to figure out is what could have caused the wide-spread rash, six months after the end of opdivo and before yervoy? Wondering if there's another thing going on besides the immunotherapy?

Anyone every have an NEW immunotherapy side effect kick in strongly six months after treatment's end? Thanks.

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Anonymous's picture
Replies 2
Last reply 11/14/2019 - 8:55am
Replies by: LRS88, Anonymous

Hi! I have a wonderful doctor who I am going to see Monday. I am just wondering if anyone has had a nevus the doctor has looked at many times and says is perfectly fine, not worried at all, just decide to grow and have it turn out to be melanoma? In my mind this one has needed to go since the beginning. However, it is the one the doctor has been the most confident is not melanoma.

I had a Stage 1A Melanoma and I just graduated to every 6 months appointments because I hit the 2 year mark. I struggle with fear now. I mean, I FEAR. I can turn every mole and sun spot into something but this time my husband is like "Yikes." He got out the tape measure this morning. Now I am churning my thoughts about it. Both the doctor and my husband are very patient with me. The doctor gives me an extra 15 minutes just to talk me through things. Pretty gracious really. This nevus has grown up and out. Very dark, textured, velvety (not hairy), and bumpy lumpy. At this point it is larger than a pencil eraser and not the best spot for skin removal stuff. It was oval and now it is round. Last time I wanted it gone because it chafes the doctor said he would freeze it. I wouldn't let him. Honestly how do they even know if it is cancerous then?

This really is such a mental problem for me. I want it tested if it gets removed. When they have to cut something off and it comes back benign or precancerous it brings steadiness with it. I mean Stage IA, awesome right? The perfect time to catch it. I would hate to freeze something to have it actually be cancerous. The truth is I am someone who just grows little things everywhere. Not like I can be mole, skin tag, age spot free. New little spots of some sort are always popping up. How often do dermatologists miss something? That seems like my secondary fear. That something will get missed. I never even worried about skin cancer. My primary I had removed because it was bleeding when I shaved my legs. I just thought I was shaving the top over and over. It was annoying not alarming. I think that is half the main fear. That I never thought it was a melanoma to begin with.

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Amy Green's picture
Replies 3
Last reply 11/14/2019 - 5:14pm

Last year I was diagnosed with 2A and had a wide excision at the spot of the melanoma (just below and to the left of my left knee) and a sentinel lymph node biopsy, which was negative.

I found a lump last week about 2 inches below my scar that is about the size of a quarter so my general practitioner has scheduled an MRI to check out the site.

I'm not an anxious person by nature, but I am curious. Anyone else on here had something similar happen? What were your results?

Thanks in advance for any feedback!

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Suzana65's picture
Replies 8
Last reply 11/15/2019 - 7:29pm

Hi everyone. In June I was diagnosed with 3a. No treatment was recommended, jut close monitoring. Now I have a different problem. I have psoriasis which recently flared up. My dermatologist recommended Methotrexate. No one on my team of physicians is able to give me the straight answer if taking this drug is safe in patient with melanoma. Any input is highly appreciated .

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EricaInMS's picture
Replies 9
Last reply 11/15/2019 - 4:58pm

My husband stopped taking nivolumab mid-June after he was admitted to the hospital with sepsis and pneumonia. After being released, he gradually tapered down the prednisone but ended up back in the hospital in August - same symptons/diagnosis, but not as severe. We actually could tell that it was coming and had gone to the ER, but all blood tests and x-rays were normal and they sent us home with pamphlets on the common cold. 2 nurses and an EMT could not get a blood pressure reading the next day, and he ended up taking an ambulance to the hospital and was admitted. Same ER physician as the day before, who was shocked at how clinically different David was from the day before.

Back home, David tried again to taper the prednisone, but much slower this time. At the same time, since his oncologist was unfamiliar with this reaction to the immunotherapy, we made an appointment with the pulmonologist he had seen in the hospital. It took 2.5 months to get an appointment. He had tapered down to 15 mg by the time he saw her, and had just started to be symptomatic again. She sent him to get all sorts of tests, which of course all came back fine, but there was no discussion of what is going on with David and how to treat. Now we wait another month to see her.

David had a CT scan on Monday and the radiology report mentions possible pneumonia. Oncologist says, ask the pulmonologist. Pulmonologist says, see you in a month.

This situation is far to serious for us to be self-medicating and figuring out for ourselves what the right prednisone dose is. David's symptoms include: muscle cramps, chills, fluid in lungs, fluid around the heart. We would like to know the underlying cause of this - the oncology department's reaction has been that it is too far after his last nivo infusion to be related, but we are pretty sure that something critical was damaged by the ipi-nivo treatments.

Does anyone have any suggestions as to what type of specialist we should be seeing? We chose the pulmonologist because she had more experience with the ipinivo in treating lung cancer patients, but maybe we should getting an endocrinology work up instead?

The really good news is that David continues to be NED from the truncated ipinivo treatment. (Stage 3c 2002, recurrent through 2005, Stage 4 sometime this year - tumor on rib and another under arm.)

- Erica

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NewEra's picture
Replies 2
Last reply 11/17/2019 - 10:26pm
Replies by: BrianP, Edwin

Thought I'd drop by and provide an update on what is going on with me.

7/31 I had my second infusion of IPI/NIVO. 10 days later I was in the hospital with severe colitis - over 30 stools a day! It took 10 days for the Dr.s to agree to give me an infusion of Infliximab - an Immuno Suppressant. Once they did the diarrhea lessened, then stopped, and I was discharged 2 days later. Unfortunately, once the Infliximab wore off 3 weeks later I had a recurrence and I was again hospitalized and needed a second infusion. Fairly rare I'm told, and my Kaiser ONCO group had never had a pt. that required hospitalization at all, let alone someone with a recurrance. sheesh. I don't like being their guinea pig! they did refer me to the JHU Melanoma Center GI specialist who had seen a LOT of these cases, but wouldn't refer me to the ONCOs there. That's where I want to go, especially because my melanoma seems to be both diverse and fickle...

New CTs were taken during my second hospitalization, and they showed two new tumors in my spine. An MRI showed that one had completely invaded the T11 vertebrae, causing a stress fracture, and then created a tumor-like growth outside of the vertebrae to the left of the sheath that surrounds the spinal cord. The other was in L4, but this had not progressed outside of the bone. In addition, the lymph node in my rt. groin had grown by 2CM!

The 3.5 CM node in my right lung had shrunk to 1.1 CM, so everyone was confused! Around that time I learned that I was BRAF positive. So both were good news!

All the Drs were puzzled about how I could be seeing results in one tumor, growth in another, and new tumors... all at the same time. They aren't interested in discussion this too much... other than "reminding me" that patients often see tumors flare before they start to regress....

yeah yeah yeah, but growth, regression AND new sites???? It's ODD, and they agree. Seeing spinal lesions is also weird, as that is usually a late-stage development. Go figure.

I opted for radio therapy treatment on T11 and on the lymph (which is very painful) in the hopes that it could stop the tumors from growing while I weaned off of Prednisone (I was at 80MG daily) in order to get started with the BRAF/MEK targeted treatment. During the 10 day treatment the lymph became very inflamed, with two dime-sized areas on my leg about 2 inches away (10 o'clock and 2'oclock) looking particularly red and painful. Upon completion of the radio therapy on T11 I received high-dose treatment on the lymph.

I saw no particular improvement from Radio therapy. While I couldn't directly monitor growth of the tumors on my spine, the painful "twinges" I started to get have increased in frequency and intensity over the weeks since they were first identified. The only subtle improvement I may have seen is a reduction in the redness/inflammation around the lymph, but even that is debatable. I was prescribed a topical painkiller, and Tramadol - an opiod pain killer. I didn't want to go there, but OTCs were no longer cutting it and I felt I needed something in my arsenal in case the pain became overwhelming. I tried taking it during the day and found it made me so drowsy that I really wasn't able to work or drive if need be. About 2 weeks ago I got a Medical Marijuana license approved and I tried some things that the dispensary had to offer, but even on the lowest dosage of a capsule stated to be 3/4 Sativa and 1/4 Indica and prescribed to let me sleep, I remained WIDE awake, but all I could do was sit in a recliner playing solitaire and watching NFL football (GO RAVENS!) because I was clearly "stoned". Sigh. I've been told it is a trial and error method to find what works for you in the dispensary, but remember you are paying full price for "prescriptions", so it's expensive when something you try doesn't work for you, or can only be used when your pain is bad enough that you don't care if you are with it anymore. Sigh.

Fast forward 7 weeks. I had another PET, which confirmed that the lung nodule was "dead", in that it remained the same size, but it's SUV was 1.1. Lymph had grown. T11 and L4 tumors flared, but L4 tumor (untreated by Radio therapy) had not grown outside the bone but had caused another stress fracture. It also had an SUV of only 2.1, so it looks like something contained it. T11 (treated by Radio therapy) had grown by 1cm and had an SUV of 4.4. New areas showed up: one on my liver, one in a lymph node in my stomach. Both of these had SUVs under 4.2, but were classified as "equivocal" because they didn't seem to have formed a true tumor... like smoke, but no fire. Radiologist said my test results were "challenging".

So, today is my first day without steroids - I feel some much more like myself! Onco has ordered the BRAF/MEK drugs, and I'm expecting a call from the ONCO pharmacy who manages things on that front. Hoping that this targeted therapy works for me without serious side effects, even though I over respond to all medicines, the docs want to start me on full standard dose. We'll see...

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jennifer83's picture
Replies 15
Last reply 11/14/2019 - 8:13am
Replies by: jennifer83, Kab, Anonymous, Coragirl, kst, MichelleRHG, NewEra, JudiAU

Is anyone a melanoma patient at MD Anderson?

I have my first appointment Thursday and am just wondering what to expect.

So far, I've been diagnosed with stage IV metastatic melanoma through a biopsy on a lump in my breast. All of my records have been sent to MD Anderson and I have copies I'm bringing, as well. I have registration at noon and my appointment with the doctor at 1:00pm.

I was just wondering if I'll be sent for scans or bloodwork the same day? Or is this one of those fluffy meet-and-greets where I'll have to make appointments for everything on other days? I'm at a new job and they said I cannot miss more than 10 hours per week or they'll let me go. I'm really hoping to make good use of tomorrow's time. Just wondering if anyone has experience with an initial appointment and what I should expect.

Many thanks!

Jennifer

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