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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BrianP's picture
Replies 6
Last reply 7/13/2018 - 11:29pm
Replies by: BrianP, mrsaxde, ed williams

This is a good summary of the trial I did in December 2016.  Unfortunately not recruiting now but hopefully will see it again in the future, maybe in some type of combination trial.

https://www.mdanderson.org/publications/cancer-frontline/2018/06/pioneer...

 

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Bobman's picture
Replies 1
Last reply 7/13/2018 - 1:12pm
Replies by: Bubbles

Greetings from the rock with rivers of fire! I hope everyone is well,always. 

Got the results of 4 biopsies on Tuesday.  The two on my shoulder on previous wle's came back as keloid,on one,and a nevus with some disorder on the other.  They both had really grabbed my attention  with not only pigment, but incredible itching and pain. The one on my neck had to be sent to the university of Utah given "the challenging nature of the case and the patients extensive history of melanoma. " It came back as a Desmoplastic Spitz nevus, which is a new one for me. I'm guessing it resembles melanoma since it was sent away for confirmation? The fourth one,  which I would have bet money on was melanoma since it was a dead ringer from a previous one came back as an AK with pigment. You just never know right!

Anyway, since no wle's needed on that round, we took off 3 of the most likely suspects on my back,all changing and begging for attention. To be continued...

Thanks as always to everyone contributing to this incredible place!

Aloha, 

Bob

We are one.

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Anonymous's picture
Replies 2
Last reply 7/13/2018 - 12:32pm

Hello,

I had a mole that developed recently on the palm of my right hand near my thumb (the one I use to write). It was removed by a dermatologist with a shave biopsy, and was diagnosed as an irritated acral junctional nevus with slight atypia. Unfortunately the base of the biopsy was not clear, so I was referred to a plastic surgeon to have an excision.

While the orignal mole and the scar form the shave biopsy are both pretty tiny (the original mole was measured at 4x4/1mm), I'm concerned that I will have tight skin on my hand.

I've searched around online, but it doesn't seem like this scenario is terribly common. Has anyone had an excision on the palm of their hand? Was your skin tight afterward?

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jlk0917's picture
Replies 5
Last reply 7/13/2018 - 11:01am

I was diagnosed Stage 4 in 9/17. A 1/18 scan after 6 Keytruda treatments showed considerable disease progression, so I began Taf Mek 2/18. A scan done after 8 weeks showed great response - no new tumors, some small lung lesions disappeared, most tumors shrank, several were stable.
A PET/CT scan done 2 weeks ago again showed no new tumors, and all tumors that were shrinking in April continue to shrink. However, one of those tumors shows uptake of 12.5, which my Onco says means it's rarin' to take off. Tumors that were stable in April all show activity, one with an uptake of 26.2! Onco says we're in the last days for Taf Mek.
The original plan had been to start Keytruda again, while staying on Taf Mek, thinking that by the time Taf Mek lost effectiveness, the Keytruda might be working (There were slight hints of response after my prior 4 mos. on Keytruda and Dr. thinks I could be a late responder). We've lost the luxury of time now, however, and Dr. is recommending a Phase 2 LN-144 trial. Interestingly, the tumor that's going nuts is the first and only one I've had that's resectable; the trial would get rid of that tumor via surgery, yielding a source for cells to harvest and genetic info that could inform future treatment decisions. All good, right?Onco says prior TIL + IL-2 has shown promise and, often, quick results. LN-144 has been fast-tracked by the FDA.
This sounds like a good course of action to me, given the need to get rid of the super-aggressive tumor and to get a fairly quick response for the other now-active tumors. I have no tumors that are accessible for injection, thus ruling out trials examining that methodology, and immunotherapy trials, my Dr. thinks, would likely generate a late response as with the Keytruda.
I'd welcome comments and suggestions. Not thrilled about IL-2, but will do what's needed to slay this beast!

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/13/2018 - 9:30am
Replies by: Treadlightly

Hi,

I am new to this. I had a biopsy for a mole on my big toe about a month ago. I have a family history of melonoma and have always been careful to stay out of the sun and use sunscreen.The path report came back 

FINAL PATHOLOGIC DIAGNOSIS
SKIN, LEFT FIRST TOE, PUNCH BIOPSY: 
-ATYPICAL JUNCTIONAL MELANOCYTIC PROLIFERATION, SUSPICIOUS FOR
MELANOMA IN SITU, FOCALLY
TRANSECTED LATERALLY (SEE COMMENT) 
-REEXCISION IS ADVISED

NUPOOR ANANT GAJJAR M.D.
** Report Electronically Signed by NAG **
Comment
The clinical images from 7/2017 are reviewed but recent clinical
images are not available for evaluation. The lesion is atypical
given the irregular distribution along the junction (despite the
location being an acral site) and there is suspicion for melanoma
in situ. Therefore, reexcision (with melanoma in situ-type margins)
is advised to ensure complete removal of the entire lesion.
Clinical correlation is advised.

Consensus diagnosis: Dr. Jessica Chan

Mic roscopic Description
Sections demonstrate a thick stratum corneum consistent with acral
skin overlying a lentiginous junctional proliferation of
melanocytes. Immunoperoxidase stains Sox-10 and Melan A highlight
melanocytes and show patchy irregular distribution along the
junction with melanocytes focally transected at a peripheral edge of the biopsy

What does focally transected laterally at the peripheral edge mean? was the 

Does it mean there could be more atypical or melonoma cells past the peripheral edge?

I am having surgery next week with the 1/2 cm margins.  I am very anxious. I know the success rate is very good if caught early enough.  I appreciate all the knowledge and support this bulletin board offers.

I wish this had been around when my mom had melanoma.

Thank you for your support

 

 

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wildpoppy's picture
Replies 1
Last reply 7/13/2018 - 8:56am
Replies by: Treadlightly

Anyone have a tiny black dot NOT be melanoma?

I have found a a black mole near my knee... Started 3-4 months ago as tiny weeny fleck, just about able to see, which I ignored. Yesterday I realised it had grown and is very dark. It is just under 1mm diameter now.

(I have had a lot of skin changes in last 2 years, 2 biopsies  done by dermatologist that thankfully came back ok). 

It seems that what I have read on a couple of forums, that many melanomas start like this, some even being diagnosed at stage 2 this small :-( 

Obviously I am booking up to see dermatologist, but I am UK, so there is often a week or two's wait, which worries me, incase this is something nasty...

 

Any help SINCERELY appreciated

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camping_mama's picture
Replies 35
Last reply 7/13/2018 - 4:38am

Hi all,

New to the melanoma world, with a 7 year old daughter diagnosed about 3 weeks ago.  (T1b, wide exsision and SLNB completed, awaiting results of SLNB).

Have any of you had experience with DMSO and turmeric/curcumin.  I have read a lot about the anti-cancer aspects of curcumin, but many also report that it is difficult to assimilate significant amounts through the diet.

My thought is dissolving in DMSO and rubbing near the area of the primary tumor and possibly the lymph basins.  (DMSO takes anything dissolved in it directly into the skin and cells).  I realize that DMSO isn't "approved" for this use, but it seems that the minor risks could be offset by the cancer fighting benefits.  

Anyone tried it?  Thoughts?

http://www.mdanderson.org/newsroom/news-releases/2005/07-11-05-potent-sp... (one of many reports on the tumor inhibiting quality of turmeric).

 

 

 

 

7 year old daughter recently diagnosed with melanoma. T1b.  SLNB results clear. 

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seholmes's picture
Replies 4
Last reply 7/13/2018 - 1:29am
Replies by: seholmes, Bubbles, Anonymous

I was diagnosed with stage 3 melanoma on December 29th 2014 at the age of 40.  My tumor was on my left shoulder.  My treatment included surgery and I elected to complete the high dose interferon for the year.  All has been good until I went for my annual mammogram.  They found a suspicious mass on the right side. I will have a biopsy done this Friday. I know that I shouldn’t be consumed with anything until I get the pathology report back but I can’t help it.  I’m worried about breast cancer but mostly worried about it being melanoma that has metastasized. I am just so anxious.  I’m mostly scared that it will be something and my kids will struggle.  They have lost so much and it will be so hard on them.  Since my diagnosis my husband was diagnosed with cancer,  they lost both my parents from cancer and their other grandfather from Alzheimer’s.  Prior to my diagnosis they lost their other grandma from ALS and my sister was diagnosed with breast cancer but thank goodness she is doing wonderfully now.  I just don’t know what to do and the wait is so hard

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casagrayson's picture
Replies 3
Last reply 7/12/2018 - 10:18pm

I'm at a loss here on what to do.  My husband has had two primaries -- one along the mandible that was classified as T1b, and another in situ on the scalp.  He has gone for full skin checks every six months or more frequently ever since.

He has been having some issues with his eye, which he thought was just a drooping eyelid that could be fixed with minor cosmetic surgery.  Long story short, a visit to the cosmetic dermatologist morphed into an ophthalmologist visit, where it was determined he has optic disc swelling, motility issues, and nerve issues causing the drooping eyelid.  The ophthalmologist ordered an MRI of the eye orbits and the brain.  The radiololgist was informed of the previous melanoma, of course, as well as other medical issues (headaches, major fatigue, dizziness).

Here was the finding by the radiologist:

1. Multifocal FLAIR hyperintensity involving the left parietal lobe, left occipital lobe, and posterolateral right frontal lobe, as well as the right temporal lobe. Much of the signal abnormality appears related to small cortical venous structures. There is an additional focus of FLAIR hyperintensity involving the right temporal lobe cortex or overlying leptomeninges with slightly more nodular associated enhancement, less convincingly contiguous with an adjacent cortical venous structure. This could represent vasculitis, particularly if the patient is receiving immunotherapy therapy for the given history of melanoma. Areas of subacute infarct are thought to be less likely, given the apparent vascular nature. Perineural metastatic disease cannot be excluded, but is less likely.

I reviewed the MRI myself (I have quite a bit of experience having had my own pituitary tumor, and I run a pituitary disease medical support group) and I definitely see the "nodules" that the radiologist references.  There are at least 8 tiny spots that light up.  Here's my dilemma.  The radiologist suggests another scan in 3 months.  The ophthalmologist wants a neuro consult (which is not available until Aug 29).  I'm wondering if we should find a melanoma specialist to read the MRI/report just to rule out possible micro metastases.

Am I overreacting?  Should we just go with the flow and wait until the end of August, and see a neuro who does not specialize in melanoma?

Strength and Courage,

Susan

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bjeans's picture
Replies 4
Last reply 7/12/2018 - 8:49pm

My husband is scheduled for an SLNB and wide local excision 3/2/18. A 9.3 mm mole had been removed from his chest. We were referred to a melanoma/skin cancer center. They immediately ordered a full body PET-CT (clear!), and we met with the doctors on his team: oncologist, surgeon and dermatologist/director (Venna). Apparently the oncologist keeps up with the literature/conferences/peer consulting/etc., and may tend to be more on the aggressive end of the spectrum when it comes to treatment. So far so good. 

I've noticed some people here who have had PET-CTs also had brain MRIs. Is that the norm and would you have thought my husband would have had one? In case it matters, no symptoms.

Thank you! You all are beyond helpful as I muddle through, reading (including Bubbles' primer and many posts),

Beth

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Anonymous's picture
Anonymous
Replies 0

Hello,

I had two moles removed via a shave biopsy.

Mole A: Irritated acral junctional nevus with slight atypia

Mole B: Irritated compound dysplastic nevus with slight atypia

I will need an excision on mole A because there was some still remaining at the base (no clear margins).

Thank you in advance!

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Slhnsd's picture
Replies 2
Last reply 7/12/2018 - 7:54pm
Replies by: kcmtnbiker, Slhnsd

Hello all! My husband was just diagnosed with both Melanoma and Basal Cell Carcinoma (in separate locations) He had his initial biopsy done and the pathology report said..

”The lesion extends to the inked lateral and deep edges  of the specimen. 

Diagnosis: Melanoma InSitu - T Classification. “

My question is.. how can the Dr say it is Melanoma InSitu when there were no clear margins on biopsy?! Can he make that determination before wide-excision surgery? 

Thank you! 

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Leslee Laurel's picture
Replies 2
Last reply 7/12/2018 - 6:52pm
Replies by: MichelleRHG, Bubbles

Dignoised in 2017, had blockage removed and now its returned, only 3% of the population have this, no research is being done that my Dr knows of.....survival rate is 5 years....

I am 74 survived Breast Cancer and now this!

Any thoughts were be appreciated, would like to hear from others who may have this.

 

Thanks

Carole

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Anonymous's picture
Anonymous
Replies 9
Last reply 7/12/2018 - 6:32pm
Replies by: Bubbles, Anonymous, ed williams

I am a physician and woke up this morning with a new dark nevus on my face that was NOT THERE last night.  there is nothing else it could be besides melanoma. it is not large but it must be melanoma and the sudden appearance makes me concerned about rate of growth and invasiveness.  I am a bit distraught about the fact it is saturday and it will be at least until Tuesday before I can get this taken off, and that with pulling out my professional courtesy card.  I think I just need some reassurance that a few days won't make a difference, even with how suddenly this appeared.

thanks!

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Sal111's picture
Replies 2
Last reply 7/12/2018 - 5:28pm
Replies by: Leslee Laurel, Bubbles

Hey everyone;

im 24 years old! I want some reassurance. I have a vulva with many moles like 8-9? One of them is very light brown and right on my clitoris. None of them is causing any issue but what i am worried about is their shape looks kinda bit irregular to me! They’re not so round some of them are round but other are not! I just can’t stop crying and can’t force my mom to go and see a doctor with me cuz she thinks moles are normal. I have a lump under labia majoras skin since like year and it’s not growing. Ive scheduled an appointment with urogynae can she see these moles? Or should I find any specific doctor for moles? Is it normal to have this many moles on vulva! I’m terribly scared. I can’t stop myself from checking them every time! It feels like they even grown a little too. One or two of them? I just need some reassurance and what should I do next? Thanks in advance loves

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