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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tedtell1's picture
Replies 1
Last reply 12/5/2019 - 9:02pm
Replies by: casagrayson

Hello Warriors;
Has anyone heard from Mike lately? It seems like it has been a while......Mike are your reading this? We would love an update!!!!! Thinking and praying for you brother.
Ted

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Info: I am a year after a stage 3b diagnosis and have done 15 of 18 adjuvant Pembro treatments. Primary right breast, 1 node with 2mm deposit.

This Sunday I found a small (under 10mm) in my left side of my groin. I can only feel when I stand up.
I have seen my CNS who has confirmed it needs further investigation and I have a CT booked for Tuesday.
With the hope I can have an ultrasound before Christmas and my results on 20th (this is hopefully not guaranteed).

My question is if it were to spread wouldn’t my bloods have showed something or wouldn’t it have gone to more nodes in the same area not on the opposite side of my body.

I’m trying to find hope but also trying to apply logic and not get into melanoma mania!

What are your experiences? What do you think?

Thank you all!!!


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casagrayson's picture
Replies 3
Last reply 12/5/2019 - 5:36pm
Replies by: Linny, RichInLife2, gopher38

I'm so sorry to have to post this from Tyais' husband:

Thank You Everyone for the kind words, I'm a little disconnected, disoriented, Tired and Sad, I will try to answer all my sweet friends messages, I Pop in momentarily to read your messages and then I'm overcome with reality.
I Do Respect and care for you all...My Wife is in Heaven crocheting Jesus a scarf.
Saturday Will be a celebration of life.

Strength and Courage,

Susan

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BillB's picture
Replies 2
Last reply 12/5/2019 - 8:57pm
Replies by: Bubbles, gopher38

Hi everyone, just a quick status update. Twenty six months NED! Scans and treatment yesterday, results this morning. I check into the forum daily but only add my 2 cents when I can add to a conversation. I do wish deeply every day for all of us to be happy and cured. Thank you to everyone providing such great advice and support in order to help anyone in need.
Bill B

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MarkR's picture
Replies 2
Last reply 12/5/2019 - 12:03pm
Replies by: jbronicki, Bubbles

Hi all
It’s been a while since I updated as needed a break, but recent scan results showed the progression I was expecting so that ended the Nivo rechallenge. Thankfully they had a trial ready to go for me and yesterday I signed up to the PLATforM trial testing Spartazilimab (PD1) and Ribociclib (CDK 4/6 inhibitor used in breast cancer). As usual the list of potential side effects is horrendous but no option but to keep pushing on.
I had hoped to get on the LN144 TILS trial but it is full globally at present. Hopefully this trial gives me enough time to get on some new TILS trials opening next year
Best wishes to all
Mark

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Kiryl's picture
Replies 2
Last reply 12/4/2019 - 9:18pm
Replies by: Bubbles

Good day, community.
My name is Kiryl. I am from Belarus (central Europe)
This is about my dad. He has Stage 4.
We are fighting as much as we can and above...
I am looking for experimental programs in melanoma treatment. My father ready to participate. He can be a volunteer. We must take all opportunists.
I am trying to find medical centers looking for such patients. Worldwide...

I would be very for any information...

Thank you...

my e-mail - gerkir@yandex.ru

also I am here as well...

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Gene_S's picture
Replies 1
Last reply 12/4/2019 - 4:31pm
Replies by: ed williams

https://www.ncbi.nlm.nih.gov/pubmed/16443053

Note: Do your research as there are differences in various CoQ10.

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

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Replies by: JudiAU

My husband hit his stage 4 diagnosis in Jan 2018 at the age of 33. He recieved whole brain radiation and was able to tolerate 8 ipi/nivo combination treatments before the decision was made to stop. In Jan 2019 he was declared NED. He is a champ and headed back to work in February and aside from some joint pain, headaches and a case of vitiligo he has faired pretty well. He had a PET in Aug 2019 that was clear but in November his CT came back showing a mass/lesion/spot on his heart. Echocardiogram came back inconclusive but assured us it was at least not a blood clot. He has a MRI scheduled this week. He did not have any prior heart disease, however he did have a tumor in front of and behind his heart when he hit the stage 4 diagnosis in 2018. His Oncologist is hopeful it is scar tissue caused by the previous presence of the tumors? Has anyone had any experience with heart troubles after stopping treatment? Or even experiencing scar tissue in areas of previous tumors? Heart disease? If so how was it treated? On a side note we are also scheduled to see a cardiologist and waiting for an appointment in the near future. Thanks in advance for your input.

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PoppaDave1961's picture
Replies 2
Last reply 12/4/2019 - 11:37am
Replies by: gopher38, marta010

Hello.
My father has Stage 4 Melanoma and Leptomeningeal Disease. He started on Tafinlar and Mekinist the end of March and responded amazingly on them. Had very little side effects and it drastically decreased the amount of cancer in my dad's body - even with a clean PET in June. This October he started going downhill again. Fatigue, weight loss, loss of appetite, and started getting little bumps all over his chest, back, neck, and groin. They are everywhere. We brought him to his doctor, he never actually sees his oncologist, just the PA, and she had no idea what they were. She said let's see what his PET shows. They never administered these drugs before, so are very unfamiliar with them. The lumps are growing and spreading. Has anyone had anything like this happen? Please help.

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sks2019's picture
Replies 8
Last reply 12/5/2019 - 8:36pm

Refraining from posting this everyday as i undersand people are fighting much harder fights here and this might be people have posted many times here.
My mom recieved her ipi/nivo 3 rd dose on Nov 9 . she had been to the ER 3 times,. Just came back from hospital after 4 days for fever,chills, nauseau ,vomiting and diarrhea.
Its been 5 weeks and she lost 20 pounds in these 5 weeks. She is taking 60 mg prednisone, 3x day reglan, imodium for diarrhea , pantaprazole for acid reflex, probiotics, 2 types of antibiotics /9 flagyl and one more) and started marilon yesterday ( makes her dizzy) . She is still vomiting and and having diarrhea. Onc nurses just keep telling me to take her to ER and ER people tell me she has cancer and sends her home after giving some IV.

I am just tired and frustrated how to control this and make her feel better. She isnt eating much except rice. how long does this lasts. Any other ideas here on how to control this better ? . i am out of words now just because I am so tired of seeing her miserable.

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casagrayson's picture
Replies 3
Last reply 12/4/2019 - 8:50pm
Replies by: jbronicki, gopher38, Bubbles

I found this post by Tyais' husband:

Tonight on this Evening of Thanksgiving, Please pull together and Love one Another, Its really the easiest thing a person can do, have compassion and understanding, everything and everyone is in loan here, Tonight I am grateful for my loving wife, Please if you will close your eyes and say something nice for her.
She needs your prayers more now than ever.

Let's all say a little prayer for Tyais and Bobby.

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LIsey's picture
Replies 5
Last reply 12/4/2019 - 9:22pm

Hello all,

I'm a melanoma survivor from almost 10 years ago (right knee, stage1) . I also had breast cancer 3 years ago. (Stage 1 as well). My husband had melanoma last year on his left shoulder, now his left neck lymph node is huge within the space of a month. He was not being followed for Melanoma by anyone but our dermatologist.

So today he goes in for a CT, but I'm expecting the worst... I only know the stats from 10 years ago and I'm hoping things have improved.

I joined this board to get information and support for both of us. We have 3 kiddos we gotta raise.

Thanks for your time,

Lisey in CO

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Dear MPIP Community:

Happy Tuesday! I would like to begin providing a brief update each month to our amazing online community (that's you). This will help build our community even stronger and ensure that you stay well-connected with the MRF! And...hopefully once per month won't be too much of a nuisance ;)  I'll try to keep my updates short and sweet, I promise!

I began last month by sharing our Survivorship Survey and once again, you didn't disappoint - we are up to 460 responses! Our goal was 300, so thank you! The survey closes on Dec. 15 so if you haven't had a chance to share your thoughts, there is still time! 

Today, December 3 is Giving Tuesday! Last year, the MRF's amazing constituents (that's you again) donated more than $56,000 that went directly to funding melanoma research! This year, our goal is $60,000! And, our generous partners at Neutrogena are matching all Giving Tuesday donations to the MRF - dollar for dollar - up to $20,000, so today your donation will be doubled! 

Lastly, our 2020 Advocacy Summit and Hill Day will be held March 8-10, 2020! Registration is now open! We would love it if you'd join us on the Hill!

Happy Holidays to you and yours. Please let me know if you need anything!

Best,

Shelby - MRF

smoneer@melanoma.org or (202) 742-5945

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I posted earlier about a specific problem I am having, but this question keeps coming up in my mind.

Does the appearance of melanoma continue to change on the skin? Or will it get to a certain point and stop?

The spot I am concerned about has been there at least 4-5 years. It was never on my radar until I recently started reading about melanoma. I've had several skin checks by a dermatologist in the last 4-5 years but I am worried it was missed. It's barely visible, but its there.

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Anonymous's picture
Anonymous
Replies 9
Last reply 12/3/2019 - 7:32am
Replies by: Anonymous, LRS88, HereIam789, JudiAU

Hello everyone,
I have some anxiety about melanoma - I'm someone who fits the description of someone who is at high risk. I see my dermatologist (she is PA at a dermatology office) at least once a year - for skin checks and other non-related skin issues.
I've got an appointment in a month. I have a spot that concerns me, although I don't believe it's changed in the last five years. I have pictures and its been there at least 4-5 years. I just recently started questioning it - I had two kids in the last 6 years so I've been adjusting to a lot of skin changes on my stomach. Everything seems to have gone almost back to normal except this one spot. It is around a mole but doesn't look necessarily like part of the mole - almost like very light tan discolored skin around/near it.
Anyway, I have an appointment in a couple of days with my GP for non-skin related issues. I'm wondering if I should show him this spot and ask him to biopsy it, or wait another month and ask the same of my dermatologist. I'm concerned that he might cause me more anxiety if he comments that it should have come off long ago or something, although I've had several skin checked with my dermatologist in the last few years.
Long story short - should I wait for the dermatologist appointment? Or ask my GP? I feel like this isn't urgent because the mole hasn't changed, although the skin around it does look different than the rest of my skin and it just concerns me.
Thanks so much.

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