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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landlover's picture
Replies 2
Last reply 11/25/2017 - 10:14pm
Replies by: landlover, jennunicorn

Hi folks-

Quick background- I was diagnosed with Stage 1 back in Nov. 2015 which progressed to stage 4 fall 2016.  My original lesion was on my neck and I had mets to lungs.  I did ipi/nivo for 1 treatment then nivo 5 more treatments and had full resolution of all lung mets.   I did such a short course because of side effects ( thyroiditis, colitis, uveitis) .

I am now on surveillance with scans/ Dr. appointment every 3 months.  So, during the summer I noticed a purple/ brown spot under one of my toenails.  I honestly didn't think much of it.  I also have my toenails painted almost continuously so I haven't looked at them much.  I took the polish off yesterday and still have the same dark area under my nail. 

I go for scans and Dr. appointment  in 2 weeks so I can ask about it soon, but is there really a chance of getting a mel under my nail after being diagnosed with another form?

Thanks for any input.

 Peggy

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jennunicorn's picture
Replies 13
Last reply 12/2/2017 - 10:15am

Hi friends!

I am a little over a week out from surgery to remove a lymph node in my left armpit (they had to take 3 since two were clumped on to the bad one). I have found that my upper arm, not really the area of incision, hurts quite a bit. Feels like a tingling pins and needles and pinching pain, definitely feels like nerve pain. I didn't experience anything like this with my groin SLNB so this is new and pretty darn uncomfortable. Just wondering for those who had SLNB in their axilla, did you also experience nerve pain, if so, how long did it last? Tylenol and Advil don't do anything for it. I've been using ice packs to numb the area to be a little comfortable for a bit until that wears off, not the easiest thing to do while working though.

Hope everyone had a good thanksgiving with family and friends. 

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

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Anonymous's picture
Anonymous
Replies 10
Last reply 12/7/2017 - 3:09pm
Replies by: GeoTony, Anonymous, cjm22, Ed Williams

Are there recommended Canadian melanoma specialists?

What about specifically in BC?

There seems to be a melanoma centre or two in Toronto but we can't move there. How else could we get second opinions or treatment ideas from melanoma specialist oncologists?

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/25/2017 - 9:45am
Replies by: Anonymous

Anyone develop  Subungual melanoma after their original Melanoma?

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1Cbras's picture
Replies 2
Last reply 11/27/2017 - 9:09am
Replies by: Treadlightly, Anonymous

What are the treatment options for ALM? Also, I'm looking for recommendations for a melanoma specialist in Northern NJ. Thanks in advance.

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Anonymous's picture
Replies 4
Last reply 11/26/2017 - 12:35pm
Replies by: Janner, Anonymous

- Dear everyone,

 

First, thank you for your help and consideration regarding this post.

 

September 2016, I noticed that one of my mole turned pink / red instead of light brown I think.

My dermatologist did a shave and sent it to the laboratory for a biopsy.

 

REPORT 1 : Shave Biopsy at Dermatology Institute

0.4 cm in greatest dimension

Microscopic Description:

Sections show skin with a domed surface. The overlying epidermis is hyperplastic and shows hypergranulosis and compact hyperkeratosis. Situated at the D-E junction are nests of large spindled and epithelioid melanocytes, some of which are separated from the epidermis by clefts. Kamino (dull pink) bodies are present. The dermal component shows focal maturation and a single deep dermal mitotic figure is seen within intradermal melanocytes.

Diagnosis :

 

Skin, right lower abdomen shave biopsy:

- Atypical Spitz tumor, suspicious for malignant melanoma, involving the peripheral margins, deep margins negative.

Comment : 

The fiding are worrisome for a malignant melanoma. Features in favor of this include poor circumscription, asymmetry, and the presence of rare deep dermal melanocytic mitotic figures. Additional FISH genomic would be helpful. A complete excision is recommended.

--> Okay, I was totally lost at that time, my dermatologist told me that it was very small, but we have to cut it out. 

Report 2: Complete excision, biopsy at UCLA Health 

FINAL DIAGNOSiS : 

SKIN, RIGHT HYPOGASTRIC AREA (EXCISION):

- Residual atypical melanocytic proliferation, excision margins are clear

- Dermal scar and prior biopsy site changes

ADDENDUM 1 :

Recut sections for send-out (requested by the patient) were performed and reviewed. A similar somewhat "epithelioid' proliferation is identified within the region of prior biopsy changes. This may represent atypical epithelioid melanocytes (as originally described) or "epithelioid" histiocytes secondary to the prior biopsy. No malignancy is identified the sections examined. Excisions margins are clear.

Finally, I asked for a second opinion in France, I sent all my slides there.

The final diagnosis is:

Atypical Spitz Tumor (MELTUMP) 

No evidence of malignancy  --> no Spitzoid Melanoma, especially because proliferation and mitotic rate is not high, but the Spitz has some atypia ( cannot translate it into English, it is so hard :)

Well, I am really lost, I really do not understand what I had. Now both of my dermatologist from Los Angeles and France told me that this is over. Just that I have to be Sun Smart to make sure that I will not get a second suspicious mole.

Thanks for your time,

Regards

 

 

 

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Hey warriors, someone may have already posted this or a link to it but I didn't see it so if I'm being redundant just skip.

Melanoma Staging: Evidence-Based Changes in the American Joint Committee on Cancer Eighth Edition Cancer Staging Manual. Gershenwald, Scoyler, Hess, Sondak, Long, Ross, Lazar, Faries, Kirkwood, McArthur, Haydu, Eggermont, Flaherty, Balch, and Thompson. NOV/DEC 2017, CA: A Cancer Journal for Clnicians. 

(I included the full citation in case any of you have docs that authored). We will need Bubbles or someone smarter than I am to decipher some of this but here are the main points.

This will likely be of most use when reading path reports or notes. I suppose there might also be some treatment implications to follow. Although the Eighth addition was published in OCT 2016, it will not be formally adopted in the US until 1 JAN 2018.

Based on 46,000 melanoma patients, from 10 centers worldwide, with stages I-III melanoma, since 1998, the following changes have been established.

1) Tumor thickness measurements to be recorded to the nearest 0.1mm not 0.01mm

2) Definitions of T1a and T1b are revised (T1a, <0.8 mm without ulceration; T1b, 0.8-1.0 mm with or without ulceration or <.08 mm with ulceration) with mitotic rate no longer being a T category criterion.

3) Pathological (but not clinical) stage IA is revised to includeT1b NO MO (formerly pathological stage IB).

4) The N category descriptors "microscopic" and "macroscopic" for regional node metastasis are redifined as "clinically occult" and "clinically apparent".

5) Prognostic stage III groupings are based on N category and T category criteria (i.e., primary tumor thickness and ulceration) are increased from 3 to 4 groupings (stages IIIA-IIID).

6) Definitions of N subcategories are revised, with or without the presence of microsatellites, satellites, or in-transit metastases, now categorized as N1c, N2c, or N3c based on the number of tumor involved regional lymph nodes, if any.

7) Descriptors are added to each M1 subcategories for lactate dehydrogenase (LDH) level (LDH elevation no longer upstages to M1c.

8) A new M1d designation is added for central nervous system mestastasis.

Tex

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/23/2017 - 4:58pm
Replies by: Tressa48, Janner

Had a shave biopsy last week.  Nurse called yesterday and said I had to have an excisional biopsy done soon but not to worry because it's not melanoma.  I'm scheduled for the next biopsy on December 4th.  I'm just not sure why I have to have another biopsy if it's not melanoma.  This is what my path report says:

Diagnosis:
Skin of lateral back, T4, right, shave biopsy:
Melanocytic nevus, compound type with unusual architectural features and
severe cytologic atypia. See microscopic description and comment.
Margins negative for nevus in the plane of the sections examined.

MICROSCOPIC DESCRIPTION:
Histologic sections are that of a shave biopsy of skin to the deep
reticular dermis. Centrally, is a compound melanocytic proliferation. The
majority of the lesion is an epidermal melanocytic proliferation consisting
of enlarged vacuolated melanocytes with variable cytologic atypia forming
irregularly sized and shaped nests and single cells which are unevenly
spaced along the dermal epidermal junction. In the superficial dermis are
smaller melanocytes forming nests with a tendency for smaller nests and
single celled growth with descent. A rare mitotic figure is present in the
superficial dermis. There is an associated mild to moderately dense
superficial lymphomononuclear infiltrate and associated dermal melanocytes.
Immunohistochemical stain for MART 1 performed and interpreted here
highlights the aforementioned features and rare scattered melanocytes
demonstrating upward migration but no well-developed upward migration or
confluent growth is identified. Deeper sections have been reviewed.

Any help interpreting this would be greatly appreciated.

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MelanomaMike's picture
Replies 5
Last reply 12/3/2017 - 1:03am

Hello brothers & sisters, hope you all are well & fighting the hell outta our common enemy. Today {Nov 22 2017} at 2pm i did my first infusion of Pembrolizumab, 165.5 mg & the other stuff to wash it down haha, like a shot a Whisky with a Beer Back! i am now officially inducted into MRF..Side effects? none really, i do feel buzzed like i did do a shot a whisky but, i dont drink or do drugs anymore {by the grace of God} so, Pembro gave me "freebi" i guess. I feel a bit run down, and that just could be me being drained from the whole "build-up" up untill it was over. All i feel is drained. During infusion, i felt my chest burn about half way through the bag so, my tumors are in both lungs, maybe that was the first time Pembro met my damn tumors? lol..like a street fight, a rumble, ya know? lol..Will see as the weeks go by, im startin to think it will be just fine, "toxicity" would have already happened right? im possitive though, we all have to be...thanks again to all of you & look forward to reading & answering alot of you here MRF...Happy ThanksGivin' to all who celibrate it, i sure do...Mike..

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1Cbras's picture
Replies 7
Last reply 11/24/2017 - 3:33pm
Replies by: Anonymous, 1Cbras, Janner

Hi,

On November 13, I had an excisional biopsy of a suspect lesion on the sole of my foot. The pathology report is still outstanding. ( It's going to be an anxious Thanksgiving). Is this a normal wait time for results. Thanks in advance for input. Extremely Anxious.

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/23/2017 - 1:45am
Replies by: MelanomaMike

First, I want to thank everyone on this site. It is a wealth of information and the compassion here is amazing. I posted yesterday about the accuracy of my biopsy results related to the streak in my nail. I got some great advice from Janner and polydad, then I received a call from my doctor today since I spoke with only the nurse yesterday. She said she was reassured that there was no cancer found, when I asked her what the cause of the pigmentation was she said “it is possible that the site of the pigmentation was so small that it was missed on the biopsy. Another option would be to remove part of the nail and repeat the biopsy.” Im flabbergasted, we had discussed removing the nail and on the day of the procedure she convinced me that she was confident we could biopsy only under the nail fold to determine what was causing the pigment. What should I do? I was already questioning the results and then she drops this on me. Is this common? Any thoughts would be appreciated, thank you!

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/22/2017 - 5:55pm
Replies by: Dhva, jennunicorn, Anonymous

Has anyone experienced flushing of the face while being infused with Nivo?  The flushing (deep red) has occurred about halfway through the infusion for the past two (4 treatments so far) treatments. Severe fatigue at the same time and then a sweaty sheen. Is this common?

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TexMelanomex's picture
Replies 6
Last reply 11/25/2017 - 12:55am

Hey Warriors!

Sorry for the framented posts, just wanted to log a quick update after round 3 of Pemrbo and PV-10. The flu symptoms hit much faster this time (and I'm hoping that also means they end sooner). Fever and chills the same night, about 6-8 hours after infusion, a little more intense than before, it seemed to take hours to "warm up" even though my skin felt really warm. More fatigue this time around also, I just woke up from a 2 hour nap which is unusual for me (I'm not really a nap person). A few more aches and pains this time so far...but again, nothing unmanageable and certainly nothing that will keep me away from some turkey tomorrow! 

As I said in the original post, I think the results are definitely something to be thankful for. God is good! Each day of life is a gift and Melanoma reminds be to be thankful every single day that I wake up..it also reminds me to fight like hell to rid myself of this disease.

I hope this finds all of you fighting and winning. Stay in the fight!

Tex

Tex

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Lori Ann's picture
Replies 9
Last reply 11/24/2017 - 5:07pm

Hi All.  I was diagnosed in January, 2015 with mucosal melanoma in the nasal passage.  Since then, I have done 6 weeks of radiation therapy, then had 7 surgeries to remove tumors; I've done Yervoy, then Keytruda.  I had one tumor shrink on Keytruda, then no response.  I just finished 3 rounds of chemo (carboplatin and paclitaxel).  The tumors have grown and spread. 

I treat at Rush Univ. Medical Center in Chicago.  We went to Mayo Clinic this summer for a second opinion and they confirmed that everything we have done so far is pretty much standard procedure.  Is Rush a good option?  We live in Northwest Indiana.

We are trying to decide whether to do a Phase 1 study of SEA-CD40 with/without Pembrolizumab (keytruda) or try different chemo drugs (abraxane and Avastin).

Does anyone have any insight?  I am OVERWHELMED.  Thank you.

LORI

 


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Anonymous's picture
Replies 5
Last reply 11/22/2017 - 8:04pm
Replies by: TexMelanomex, Anonymous, Bubbles, sister of patient

My husband is currently undergoing immunotherapy for stage 4 melanoma due to tumors found in his lymph nodes.  My niece just called and mentioned her daughter has a small grade fever and is wondering if they should stay home tomorrow (Thanksgiving) as to not bring germs around my husband.  His Dr. has never said one way or the other rather he should take extra percautions not to get sick.  He works, and is out and about around people all the time.  I left a message for our Dr's nurse but am told there aren't to many people in the office today so it may take them a while to get back to me.  I thought I would ask this group what your experience has been.  He is otherwise healthy, seldom gets sick.   I am worried that if he gets sick that they might want him to skip a treatment until he is better, and we don't want to skip any treatments as he is responding so good to them.

 

Thank you.

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