MPIP: Melanoma Patients Information Page

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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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MelanomaMike's picture
Replies 50
Last reply 10/20/2019 - 12:18am

Hi Family, yesterday went smooth, tons of bloodwork EKG's, and regular vitals ALL FREAKIN day, i started the meds at about 10am, took the Epacadostat (pills 400mg, one is 100mg the other is 300mg ill take that twice a day) then right after, they set the drip box to began my IV (only 1hr thank God) and the INCMGA00012 flowed thru my body without any toxicity reactions or vital set backs, i was there from 7am to 4pm, heavy monitoring, my team is just the best! Both coordinators Roland and Nan, Nan & i hit it off right off the bat were both Irish, she 100% im 50% (Mom) and both extreme feline lovers and animal welfare advocate soldiers! Then theres the Prophet Of Melanoma Warfare, Dr. Hamid! And let me tell you, besides his heavy knowledge of Cancer, he is so FUNNY! theres a side of him you will not see in his conference/interview videos!! ....I have some good news guys! My tumor on my left side (stomach under ribs) biopsy shows its NECROTIC! Dead freakin Mel cells! (No sign of Mel!!) My last bag of Opdivo was June 23rd, and this goes to show what we already knew and have said, Immunal therapies can continue working its biological magic months & months after stoppage....A "Quality of life" surgery may be performed to cut the rest out, its still painfill!(thank you for my GFMe money cuz thats not covered!) Plus im gettin a a kickass "Port" put in! Its under the skin!! Iv never seen one like it!! Oh! And as far as my recent CT scan not showing my already confirmed Mel Tumor in my Sigmoid (intestine) CT' s are not always reliable, one day its there, next scan its not! Were keepin a watchful eye though, what if the Opdivo is working there to! I still know "somethings" there, ill spare you the graphics!..Haha, its like ive only been in Hamids hands for a month and the crap is disappearing! And NOT by my trial meds either! (Not yet anyways!)....im feeling run down, a little more then Pembro, Ipi & Nivo plus my stomach is a bit in a knot, not diahrea, just a mild pain, a bit dizzy, not all the time, comes & goes, so far so good guys, i think im doing the next BIG thing for future treatment for my MRF Peeps!... love ya all, ill write later...im so hopeful now...

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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Bubbles's picture
Replies 1
Last reply 10/10/2019 - 12:07am
Replies by: MelanomaMike

I've been holding you in my heart and have all fingers and toes crossed for you!!! Hope things are going well! Celeste

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Anonymous's picture
Replies 6
Last reply 10/11/2019 - 5:43pm

do a search if interested

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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smiller's picture
Replies 6
Last reply 10/11/2019 - 9:52pm

My husband had to stop opdivo/yervoy after three treatments (June 2017 last treatment). Scans every three months showed decrease in tumor size. In April of this year his doctor let him skip to six months for his next scan. We received the results Monday (10/04) and his doctor's words were: "Your scans look great!" And no, he has not received any treatment since June 2017. He does not take any supplements, vitamins and is not on any special diet. He consumes meat--doesn't eat enough fruits or vegetables--and sugar is a food group in his opinion. Just saying all this because I do not understand how this disease treats people so differently. My heart aches for people who do not respond while doing everything they can to fight this beast.
And I know it can attack my husband at anytime if it so desires, but for now we are truly thankful. I hope this post can bring a little hope to someone.
Thanks to all who post here and for all the valuable information.
God Bless,
Jim's wife

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Bobman's picture
Replies 2
Last reply 10/9/2019 - 9:36am
Replies by: mandyjill, Bubbles

Hi everyone. Haven't been posting much lately, but I keep tabs on everyone, every day , as I always have. Laughing, crying, rooting you all on in your fight. I feel like I know most of you, and certainly feel your tragedy, and triumphs. And the incredible support, advice,education and love on this forum makes this a special place.
Today I got the results of a biopsy from last week. Melanoma insitu on the tragus of my left ear. That's primary number 12 for me, and the 8th insitu in a row. This lesion came on fast and looked angry. Quickly failed every aspect of the abcde rule. Its speed of evolution had me concerned pretty quick. So it's in a tricky spot for the wide excision, and my normal surgeon for wide excision is referring me out to a surgical oncologist, and plastic guy. He mentioned to me that hopefully the rest of the lesion would remain insitu since we just punched a small part of it. It covers the entire tragus. I'm thinking I'm in for the most radical wide excision of my time chasing this persistent pest.
Starting with a new team, oncologist, pcp and the new surgeons. Still pressing to rule out mets to the epidermis, but can't seem to raise any eyebrows yet. It's a long road navigating the system. Feels long
Anyone with information on what I'm likely to encounter with this round, I'm all ears. At leat at the moment, since keeping the left ear I've been told may be questionable, as well as part of my face. It's my most photogenic side too!

You're all not far from my thoughts....ever.
Aloha,
Bob

We are one.

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Melanoma Gin's picture
Replies 2
Last reply 10/9/2019 - 1:13pm
Replies by: Bubbles, MelanomaMike

Hi I am here.
Hope this works.
I am happy to hear about your great great day.

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Ana Costa's picture
Replies 6
Last reply 10/16/2019 - 4:03pm
Replies by: Anonymous, Ana Costa, Bubbles, Edwin

Hi, everyone.
I am very thankful for all your posts, I have learned so much about the disease and its treatment!
My mother-in-law was first diagnosed in 2009. She had radiation and though she has lost her sight partially, she has led a normal life until last january. They found mets in her stomach, liver and kidney and recently some subcutaneous lumps were considered malign as well. She had immuno (nivo, alone) from february to september. As the results were not as good as the oncologist expected, she said there was not much to be done, but they could try ipi, even though she was sure it wouldn't help. After that, the only treatment would be chemo, but she said she didn't believe it would have good results.
There are no support groups like this in Portugal, where we live, so I would love to hear your stories, advice, comments, ideas... since from what I have read here, there were/ are other options. How were you treated in similar situations?

Wishing you all luck, hope and strenght.

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sks2019's picture
Replies 7
Last reply 10/9/2019 - 12:50am
Replies by: sks2019, Edwin, JudiAU, tedtell1

my mom recieved her first iPi/nivo dose on sept 10 and in the third week got UTI a and was treated with antibiotics.

Since then she is also having headaches and jaw aches to a point that she can’t chew anything . Her jaws are hurting and when she chews she feels the pain in her nose as well.

She recieved her second dose today and is also taking 5 mg prednisone for headaches .

Has anyone experienced jaw aches and headaches with the combo ?
I am
Hoping this is not any kind of progression.
Doctor said if it doesn’t go away they will do a brain MRI
Please share you experience

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BrianP's picture
Replies 2
Last reply 10/9/2019 - 8:28pm
Replies by: lkb, Bubbles

This looks like it should be a pretty interesting movie. No doubt about it many of us wouldn't be here if it weren't for Dr. Allison's research.

https://www.youtube.com/watch?v=KI9X1de_XsU

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Angela_2's picture
Replies 5
Last reply 10/9/2019 - 6:16am

Good evening -
Can anyone please help me find a doctor or who do we talk to for Mucosal Melanoma for my husband. It is a mass that was in his left nasal passage positive for melanoma and his maxillary sinus.

Just diagnosed 2 weeks ago and we HAVE to get another opinion or option. They told us here "we are going to throw this at the wall and see what happens. We are the 6th case for Mucosal Melanoma in this institutes history. WE ARE lost..... This is my soul mate and I am begging everyone to please help, We will go anywhere. do we see melanoma doctors or Radiation oncologists? We have already received 1 dose of Keytruda last week. Surgery first week they found the mass in his nose... now they want to just drill bone out of his sinus cavity and then radiation - we asked about proton therapy and no one will tell us advanced or no? They honestly don't know what to do....... This is hurting so much. Im so scared. We just found each other, got married, buried a parent, taking care of my 95 year old grandmother now and we are hit with this scary unknown rare heartwrenching news..... we thought it was a sinus infection. Im so sad. WE have had all the imaging adn need to find someone FAST to see - how do we get in? I looked up Dana Faber, U PENN has amazing oncology doctors wow, and MD Anderson. But WHO is the question and how. PLEASE HELP us - with all my heart. I need any advice you can provide and I am so happy I found this site which is actively assisting fellow friends supporting each other - you all are so amazing. I hope we can become friends! and fight this C and find our journey together.....
Angela

:) thank you

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Deeksha Kaurav's picture
Replies 3
Last reply 10/8/2019 - 8:39am
Replies by: Hukill, sks2019, MelMel

My mother was diagnosed with melanoma in rectum which was operated and removed. After surgery she was undergoing immunotherapy by Nivolumab. After 7th dose, non resectable melanoma was detected in lungs and bones with symptom of pleural effusion. She has been given first dose of Ipilimumab along with Nivolumab. After 2 weeks she had fever which doctors suspected to be viral fever and was given antibiotics like amikacin. Blood tests for bacterial infection were negative. Now it has been a week, she is still having fever. Her body temperature increases to around 101 and starts decreasing by itself. She is having such cycles quite frequently now along with severe cough when her body temperature is elevated.

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Happygal's picture
Replies 18
Last reply 10/9/2019 - 11:40am

Hello,
I just got home from the hospital after 4 days. I was delirious and my husband made me go in after a full day's struggle. They were chasing infection and couldn't figure it out. I had a lumber puncture to check for meningitis. They did a CT scan and found more brain lesions..... I finally got to come home. They set me up with Hospice and I will enjoy each day I have. We are going to do some little trips we've been wanting to do. Appreciate all the prayers
Tyais

Tyais

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Tsvetochka's picture
Replies 5
Last reply 10/9/2019 - 6:51am

I have slowly been loosing weight since my diagnosis. Yesterday I got my sixth dose of Keytruda, but apparently now I'm too skinny for it? Has anyone else come up against this? They don't want me to have any more unless I can get back up over 50 kgs. Apparently it's either a full dose or nothing?

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Bubbles's picture
Replies 3
Last reply 10/8/2019 - 10:23pm

Edwin's post of the BBC report (https://www.bbc.com/news/health-49853878) and the comments that went along with it were excellent and cheering! Here's a link to that thread if you missed it:
https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma...

If you're interested in a further breakdown of the numbers past and present as well as a look at the abstract presented by Larkin and other Melanoma Big Dogs, I put a post together on it this morning. Nothing new really, just another way of looking at the numbers. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/10/ipiniv...

For what it's worth. Thanks Edwin and the rest of you. Have a great weekend. - celeste

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mary_beth1978@yahoo.com's picture
Replies 3
Last reply 10/6/2019 - 11:42am

I know this may sound silly but I still need to ask. Has anyone had melanoma reoccur along their nerves? I had mine removed 7 years ago. My scar bothered me for awhile maybe even a year and then nothing unusual except if the weather got weird sometimes it would feel strange. However about 3 months ago it started to tingle off and on constantly. It almost feels like someone putting their hand over the scar. It happens regularly now. There are no bumps and the scar does not look at all changed.

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