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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adriana cooper's picture
Replies 3
Last reply 2/10/2018 - 4:26pm

Folks my friend Connie aka Cindyco notified me that her mom Cindy passed away Thursday night, now free of melanoma (LMD) and all our worldly burdons. I know this has been a very difficult month for them. Please join me in offering your strength and prayers for her, her dad and the rest of her family over the coming days and months.
Your support has helped me so much and I know it will help them too.
Rob

Adriana

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cancersnewnormal's picture
Replies 1
Last reply 2/9/2018 - 1:25pm
Replies by: ed williams

For any of you science geeks out there.... some fine reading material.  :)  https://www.nature.com/collections/btwlvcpdls

http://cancersnewnormal.com

-- Niki

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rick1981's picture
Replies 13
Last reply 2/9/2018 - 11:46am

Hi everyone, My wife (Stage IV since June '14) has started on Keytruda Wednesday this week and she also got a shot of Xgeva to strengthen her bones. She was in a pretty good physical condition at that point, walking every day, feeling well - but she has gotten severe bone/joint pains and has had fever & sweating spells since. I have looked at the archives here at MPIP and have found that Pembro can cause arthritis-like symptoms and the Xgeva could cause the fever. But if you have any more thoughts, I'd be happy to hear as it's just a shock to see her move from such a good state to being bed-ridden after the start of Keytruda. Just hope these are side effects (and not directly due to the melanoma; she had "tumor fevers" in June) and that these are signals of the therapy working. It’s scary to see her change so quickly... Thanks for any advice!

 

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Nett's picture
Replies 0

My origonal mm lesion appeared on my back in 05, after which they removed with with clean margins,snb, and removal of my lymph nodes under my left arm as a preventive measure, I believe I was staged as 2b.
After no signs of reoccurrences for 12+ years, it returned aggressively in my liver. I am braf pos. and I was put on taf/mek until the tumours became small enough. Then I had the ippi/opdivo which worked very well but I stopped due to toxicity in my liver,then back to taf/mek and just recently finshed two rounds of keytruda until tumour progression exploded in my liver. I am back on the taf/mek. They say there is nothing else they can give me. Are there long responders to taf/out there? Should I just accept this is my last year?

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Nett's picture
Replies 0

My origonal mm lesion appeared on my back in 05, after which they removed with with clean margins,snb, and removal of my lymph nodes under my left arm as a preventive measure, I believe I was staged as 2b.
After no signs of reoccurrences for 12+ years, it returned aggressively in my liver. I am braf pos. and I was put on taf/mek until the tumours became small enough. Then I had the ippi/opdivo which worked very well but I stopped due to toxicity in my liver,then back to taf/mek and just recently finshed two rounds of keytruda until tumour progression exploded in my liver. I am back on the taf/mek. They say there is nothing else they can give me. Are there long responders to taf/out there? Should I just accept this is my last year?

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TexMelanomex's picture
Replies 18
Last reply 2/8/2018 - 10:15pm

Hey Warriors!!!

So just finished my 6th round of Pembro (completed PV10 at the 5th round) and quarerly scans. The news is......well......GREAT!

Complete response acheived with the PV10 lymph node, dead, done, gone! The two remaining nodes (abdomen) have shrunk by 50%! The treatment team is "excited".

I told myself that as long as I was showing stable disease on the scans I'd be happy (for now because it would meant that I am holding the battle line)...I got much better news! Feeling good Warriors!

I hope all of you are staying in the fight! Warrior On!!

Best,

Tex

Tex

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TexMelanomex's picture
Replies 31
Last reply 2/8/2018 - 10:13pm

Celeste,

I want to thank you for all that you do for all of us. You have been NED for years and you still tirelessly consolidate research (and make it understandable) for all of us. You are here to offer your support and experience when we need it. Your blog has been invaluable and has taught me most everything I know about Melanoma. I think (and hope) I speak for all of us when I say thank you, from the heart, for your help, knowledge, and support!! You are an absolutely a Warrior and a victorious Warrior at that! Thanks for leading the way.

Sincerely,

Tex

Tex

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Threefitty's picture
Replies 2
Last reply 2/8/2018 - 5:59pm
Replies by: Bubbles, guynamedbilly

I'm 7 months into a  blind CT and believed to be in an Opdivo only arm. (Stage 3B, adjuvent tx)

From about month 2, I have had a "productive cough" (clear phlegm).

Never gets too annoying. But when I lay down at night I "wheeze and gurgle" lightly and have this weird little noticable extra aspiration noise at the end of exhaling that is like nothing I ever experienced. Maybe that's how we breathe, I just never heard it before.

MD is not overly concerned and it has now been pretty constant for 5 months. Nothing discomforting or alarming as to pneumonitis, but something.

I thought I read someone mention "wheezing" and nivo. So I am wondering if others are experiencing or have experienced this "light side effect", and whether it remained stable or dissipated after treatment stopped.

The balance of my own Opdivo report, FWIW2U, is no meaningful side effects aside from thyroid medication now being necessary.

Happy Travels,

 

Dave S.

 

 

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Scooby123's picture
Replies 4
Last reply 2/8/2018 - 5:22pm
Replies by: Scooby123, BillB, Mark_DC

Hi all hope you all well as can be. For anyone who has had keydruda or on it at present. The only side effect I have been getting is loose Bowles movements about twice a week normal after had treatment , aching joints.

With the bowle movements does it get better with more treatments or gets worse or the same. I have done 9 treatments scan last week awaiting results but not had much bowle issue this time after treatment. I watch my food intake due to certain food irritates my Bowles but also I like spices food and I am coing well. Just woundering how others are coping with it.

Scooby❤️

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Nemesis's picture
Replies 3
Last reply 2/8/2018 - 4:32pm
Replies by: Nemesis, Janner

Tumor Site: Back
Primary Tumor:
Histologic Type: Superficial spreading
Tumor Thickness (pT): 0.94 mm
Ulceration: Absent
Macroscopic Tumor: Present
Tumo
r Size: 0.5 cm in largest dimension
Microscopic satellite nodule(s): Not observed
Macroscopic satellite nodule(s): Not applicable
Margins:
Lateral: Uninvolved, nevus extends to a
peripheral margin
Deep: Uninvolved
Regression: Not observed
Associated Melanocytic Nevus: Present
Angiolymphatic Invasion: Not observed
Perineural Invasion: Not observed
Mitotic Index: >/=1 mitoses/mm2
Pathologic Stage (pTNM): pT1b Nx

 

Histologic sections of skin on six H&E slides from two blocks
are reviewed. The specimen shows a compound proliferation of atypical
melanocytes. Junctional melanocytes are epithelioid in appearance
with enlarged nuclei and prominent nucleoli. There is transepidermal
migration of melanocytes. Similar appearing atypical melanocytes are
noted in the dermis at a depth of 0.94mm. Smaller, more bland
appearing melanocytes are present in the dermis and extend more deeply
around dermal vessels and adnexal struc
tures. Mitotic figures are
present in dermal tumor cells at a rate of 1/mm2.

 

I think I undestand most of it. but hat is your opinion?

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Maureen038's picture
Replies 8
Last reply 2/8/2018 - 4:28pm

My husband, Bill just had scans and thankfully there was nothing new!! We had such a scare last spring when there was something new in his liver but it wasn’t cancer. Bill is taking a month off his breast cancer drug ( he has the her-2 mutation) because his liver enzymes are very high. He’s been stage 4 for five and a half years. 

I read this board often to get the latest and greatest from Celeste, Ed and Brian P. I hope all is well with you Brian.

My prayers are with all warriors and their families!!❤️

Maureen

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Hello again. I had a spot show up on my CT scan, at the same location where I had what felt like a subcutaneous bump. It was near to my original primary. It wasn't discolored and felt more like a deep pimple. I had it biopsied and the result was benign, folliculitis.

Has anyone had an inflamed hair follicle or pimple show up on a CT Scan before?

My doctor wants to examine it again at my next follow-up to see if I need another biopsy.

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laulamb's picture
Replies 1
Last reply 2/8/2018 - 11:25am
Replies by: SABKLYN

Looking for advice:  Long story short:  Diagnosed Stage IIIa in 2016, did 4 treatments of Yervoy 3mm every three weeks, then did maintenace dosage every 3 months for a year.  I was traveling 4 hours to Dr. Lynn Schuchter at Penn Medicine in Philadelpia for the Yervoy treatments.  After my last maintenace dosage she said I could see my regular oncologist for scans every 6 months for 5 years ... and if something shows up on the scans to come back to Penn Medicine.  

Saw my local oncologist to get setup with scans.  Since I am 44 years old he is recommending just doing CT scan on chest and MRI on pelvis.  He said the full CT/PET scan on chest and pelvis would be putting too much radiation into my body.  He did say if anything would show up on the MRI of the pelvis he would then do the CT/PET scan on the pelvis to look at it closer.

Any opinions on this plan for scans?

As always, thanks in advance for any advice.  Everyone is so kind and helpful on this board.  

Laura 

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hsmom23's picture
Replies 4
Last reply 2/7/2018 - 9:56pm
Replies by: hsmom23, SABKLYN, Anonymous

My father in law has just been diagnosed and we are looking for the best melanoma specialist in the Atlanta area. Any suggestions would be greatly appreciated!

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caitybird's picture
Replies 2
Last reply 2/6/2018 - 6:44pm
Replies by: DoubleTT, Boise Steve

I am wondering if anyone out there has been on the seviprotimut-l (pol-103) trial and experienced any side effects. I have 1 more injection to finish my 2 years, have always had skin reaction (my arm looks like a drug addict that doesn't know what a vein looks like), but I've been having chronic stomach/abdominal pain for a year now, nothing helps, also having pressure changes in my head for lack of a better description. Nothing I can find in research mentions side effects beyond injection site; Dr is unconcerned; ct scans show nothing. I'll mention the Dr is not my original, I moved after starting trial and had to find another study site. The Dr I was assigned was a hematologist but left, my replacement is also a hematologist. Lymphedema specialist says maybe its lymphadema; gastroenterologist says maybe its superficial nerve pain. My next step is demanding endoscopy and colonoscopy. But, I have found articles on other immunotherapies that have caused stomach/colon responses due to basically autoimmune response. I just would like to know if anyone else has had any side effects or if I'm just falling apart.

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