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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Preludejo's picture
Replies 3
Last reply 5/8/2018 - 1:37pm

Hello, so Im in a bit of a panic. Yesterday while just random feeling the back of my Knee I felt a little bump and at first thought it was a Blood Blister. Wife said def looks like some kind of mole. I have never noticed this before so quickly made an appointment with Dermatologist.

 

she did a scrape Biopsy but didnt say it looked good/bad etc so Ive been kind of worried. Im 37, no history of skin cancer in family.  The size was about 1/2 the size of Pencil eraser and seemed more raised yesterday than it did this morning. Anyway. Its off me now but here is a pic I took this morning before it was scraped off.

 

 

 

 

 

 

 

 

 

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Dear MPIP community,

We are reaching out on behalf of a pharmaceutical partner who seeks the perspectives of melanoma patients as they design their clinical trial protocol. They need your feedback so that the design makes the most sense for people with melanoma.
One-on-one telephone interviews will be scheduled at the convenience of the patient.

If you:
•        are interested in providing feedback about trial design/protocol
•        are an adult patient with metastatic melanoma and
•        have failed a prior therapy with anti-PD-1 or anti-PD-L1

Please contact Beth Allgaier at ballgaier@melanoma.org with questions and to participate in a one-hour phone interview.
Thank you – your voice matters in the drug development process!

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/8/2018 - 9:06am
Replies by: Anonymous, marta010

Blad spots the size of quarter on head

Question: 

1. Could it be from stress?

2. Could Opdivo cause bald stops on your head? ,

I have noticed a few perfect round bald spots where the hair is just gone.

I have an appointment with my Family Dr. next week and I am for sure to ask him.

Just courious if anyone else has had this issue.

Thanks All.

 

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budeny's picture
Replies 7
Last reply 5/7/2018 - 4:40pm

Hello, 

Have a question about trials.

Are they generally 100% covered by whoever initiate/sponsor them or there are still costs that should be covered by insurance?

The reason I'm asking is that I'm getting offered one trial of pembro/ipi plus third drug combination and its only pembro cost that's covered by trial and everything else will go through insurance - ipi and scans. And can be even some extra procedures that will be completely on me like extra blood draws or biopsies..

Thank you,

Michael

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MelanomaMike's picture
Replies 14
Last reply 5/6/2018 - 7:59pm

Hi MRF Family, im finally here, sorry i was MIA "again" and i know i said i would write more but, im just not having a good time like someone said i wouldangry....Current Status Report: started Pembrolizumab Nov 2017, had 7 infusions of it with 2 scans  showing desease progression, 1st scan was a bit better as i wrote about back when it happened but, last weeks CT w/contrast showed absolutley nothing to hip hip huray about, all tumors did get larger, no new ones, none shrunk, zilch, just got bigger, i didnt even ask the sizes, BIGGER is freakin still BIG in my book, all tumors are to big...

 Plan B is {what my Oncologist & i have called it} is,  the ol' Opdivo/Yervoy combo. This will began next week May 11th {Friday thank God} so, i know it comes with more side effects then Pembro {wich I had very little of except a 45.3  TSH Thyroid level {i know right?}...Screw it, bring it! Plan B has got to work cuz Plan C SUCKS! A week stay "In-House" treatment of IL-2  or whatever else they would plan on givin me...no no no...Ipi & Dipi  is Gunna Work!...theres my latest, now its time to browse and reach out to some new folks here since ive been on last...Take care ya'all, ill keep you posted...Warrior On Bro's & Sisters, Mike..

 PS: Anyone who has or is currently taking the Opdivo/Yervoy combo please reply, id like to get a heads up on effects...Thanx..

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Hi All! I have not been dx with melanoma, but I do have a bunch of dysplastic nevi. I thought it would be a good idea to have copies of my pathology reports from my biopsies, and until I can see my derm again, was wondering if someone could help me understand one of them/answer a couple questions?

"The epidermis is irregular with elongated rete ridges, hyperpigmentation, and diffuse melanocytic hyperplasia confined to the basal epidermis. Melanocytes are also present in the dermis. Junctional melanocytes vary in size, shape, and distribution but are condined to the basal epidermis. Rete ridges are elongated and surrounded by concentric fibroplasia. Lymphocytes, histiocytes, and melanophages are present in the dermis."

I have 2 or 3 dysplastic nevi that had this same description in the reports, all came back mildly atypical. My questions mostly concern the last sentence...

1 - The way I understand that sentence, is that my immune system is doing it's job and "attacking" cells it sees are atypical. If that is the case, then shouldn't all my atypical moles have that sentence in their descriptions (because they do not)? Could that be because these particular moles were "active" or "changing" at the time of biopsy and the others without that sentence were "stable," or something along the lines of that?

2 - Should one worry if that sentence is in there? My derm doesn't feel the need to completely excise mildly atypical moles (he does moderate and severe), even if there is pigment regrowth, UNLESS the regrowth is outside the scar or just looks really funky...would it be better to ask him to excise the rest since that sentence is in there (he will if i ask him to)?

Thank you for your help!! :)

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TexMelanomex's picture
Replies 12
Last reply 5/6/2018 - 12:28am

Hey Warriors,

Back down at MDA for my periodic scans today and another round of Pembro tomorrow. Scans will be resulted tomorrow so I'll update after I get some news. Hoping the PV-10/Keytruda combo has wiped out these last two nodes in my abdomen but proof will be in the pictures. 

Hope you are all warrioring well and kicking some Melanoma ass.

Tex

Tex

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slh4448's picture
Replies 14
Last reply 5/5/2018 - 2:57pm

Hey everyone,

i know that there are several people who have been or are currently on Yervoy 10mg. I was just curious if you could share anything about the side effects and how long side effects lasted? I have my first infusion tomorrow morning.

Thanks all,

Stacy


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MelanomaMike's picture
Replies 2
Last reply 5/5/2018 - 2:57pm
Replies by: obtu.bt, ed williams

Is it me or does "Anonymous"  here at MRF have "multiple personalities?"

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My mole is located in my upper right buttock. Had it checked by a dermatologist and she said it was nothing. Im not sure what the dark pigment around my mole is.

There is no pain in the mole or the area around it but sometimes it itches around that area although im not sure if its because of my sciatica (nerve pain in my lower right buttock and leg that can also cause itching) or just me being paranoid.

I also have some stretchmarks from losing weight, also is it ok to have a dry mole that has some cracks?

 

http://i761.photobucket.com/albums/xx255/robrt_54/IMG_1260.jpg

http://i761.photobucket.com/albums/xx255/robrt_54/IMG_1241.jpg

 

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Rowdy W's picture
Replies 8
Last reply 5/4/2018 - 8:43pm

Is anyone else taking nivolumab treatments and can discuss what, if any, side effects you might have experienced? I've only had one infusion so far and I'd just like to discuss side effects.

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/4/2018 - 6:43pm
Replies by: tedtell1
dessie's picture
Replies 8
Last reply 5/4/2018 - 1:58pm

More spam ... grrr..   btw has anyone on Opdivo find that the further you get away from your treatment, the more fatigue, itching , bowel upset and dizzy others have?  I am just about a week out of my 4th infusion but i find that the day of is iffy but not bad.. day 2-5 great but as i get closer to the next infusion (for me every other Thursday ), my side effect symptoms seem to become amplified... i am due again 1 week from tomorrow.  Just odd , but def tolerable considering the alternatives ....

Have a great day everyone

Dessie

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Nick C's picture
Replies 2
Last reply 5/4/2018 - 1:42pm
Replies by: Nick C, Threefitty

Since my last clinical trial didn't work, its time to look at my options:

Ipilimumab + EZH2 Inhibitor on a clinical trial

Ipilimumab alone (standard care)

Single Agent ERK Inhibitor on clinical trial

I have avoided Ipi since it was first offered to me three years ago. Went on Keytruda as a standard treatment January 2017. Had early success, but then new areas showed up. Went on a Keytruda + trial drug in December, but still showed progression after four months.

That brings me back to Ipi. In consultation with my Onc, he felt the if I'm going to be on Ipi why not add a little something. The trial is four Ipi treatments every three weeks and taking three trial pills daily. My hesitation for Ipi are side effects. I have had no side effects with Keytruda.  There won't be an opening in the trial until later this month and I have to wait 28 days before starting a new trial. So last Saturday I retired. That also gives me time to go on vacation (Is it still a vacation when you are retired?) To bad I can't wait until January...if I'm going to feel crappy, might as well be during the winter.

In the meantime, I can go back on my supplements and keep my immune system at full strength. I think there is also a "Honey Do" list wating for me.

Nick

 


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Coragirl's picture
Replies 8
Last reply 5/4/2018 - 11:56am

My husband is going to start treatment next week and his doctor is going to use opdivo.is there a difference between Opdivo and Keytruda? He is stage 4 with a small lung lesion. Any information on the drugs or side effects would be so helpful. Thank you

Amie Taylor

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