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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Anonymous's picture
Replies 4
Last reply 12/8/2019 - 12:04pm

hi how to I look for really good treatment for this? I was just dx'd.
live in fairly rural area but drs. are associated with John's hopkins
and staff every case every week. first meeting with oncologist in 2 days. how do I know I'm getting the correct treatment???

bill w

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Julie in SoCal's picture
Replies 8
Last reply 12/14/2019 - 12:12am

Good Saturday Morning, Friends!

I Just wanted to check in, say "hey" and update you all on the what-nots.

First of all, this past week Lil' Chubbs, Doggo, and I did a simulated camping trip at Crystal Cove State Park. It was just one night (California camping is really just a competitive race for nice campsites) but I pretended that I was going for a week. I did this so I would check everything on the trailer out, see how it works and find anything that needed fixing. I can report that 1-night camping, even in an awesome trailer, is still a lot of work, but less work than tent camping. I can also report that the Doggo thinks the trailer is a big doghouse on wheels. She loves it! And it's even better that I join her in her doghouse. Of course, sleeping with the doggo is like sleeping with a toddler... but I digress. All in all, it was a successful first trip and I would say Lil' Chubbs the trailer is just about ready for next summer's Awesome Adventure (SoCal - Yellowstone).

If you're interested, here are pictures of Lil' Chubb's Maiden Voyage to Crystal Cove, CA https://drive.google.com/drive/folders/14shh7hi_BCm-c_kmfTwREtsAPaXP6zxf...

On the lung cancer front, the results from my bronch and hilar biopsy were inconclusive. Technically thery did not find any cancer, but they didn't get any lymph node, either. So we don't know what's going on there. I have scans Dec 18th and we'll see if there are any changes and figure out a plan from there. I also had radiation to T9&10 to mop up some pesky spinal tumors. The good news there is the the tests for radiation showed that the chemo was working!

On the melanoma front... it appears to this reporter, that the Mel tumors in my arm are shrinking. Now let me set the scene. While I have had a boatload of treatment prior to these critters popping up, I have not had any treatment to specifically address these specific critters. So when I told the Rock Star I thought they were shrinking, he yelled "WHAT!?! GET OUT!!!" and of course everyone came running. Could it be that previous treatment is kicking in and kicking Mel out? Or maybe this is the answer to the prayers of my friends and family? Just maybe! I'm thanking God for His mercy and calling this a win.

So this is the news! Forever grateful for friends, family and you all!

Shalom,
Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

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mrhubahuba's picture
Replies 11
Last reply 12/14/2019 - 11:59am

When does a patient usually seek out a clinical trial? Is it after all current avenues of treatment fail or should a patient always be on the look out for a trial? It's so confusing with all the different trials out there and I imagine it would be tough for the average patient to decide which one to choose especially since that decision can be a life or death one. Is it the patients responsibility to seek out these trials or the doctors? I imagine the doctors are so busy with day to day treatments of their patients that they wouldn't have time to screen every patient for admission to every clinical trial since every patient is unique.

Cheers
John

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MelanomaMike's picture
Replies 12
Last reply 12/12/2019 - 9:17am

Hello Family, i dont know how many times i can say sorry for not writing but, i am...Since my first infusion Oct 8th, it took about a few weeks to start a side effect directly or indirectly, causing VERY low energy despite my blood panel being normal for every draw..I was added a palliative care doc to my team recently & he prescribed me Ritalin which im not sure i like, i started it last Tuesday, it helps but drops me like a sack of dry cat chow soon after, i may request another type. Im at my 3rd infuse of INCMGA00012 & i take my Epacadostats twice daily but, i had my first CT scan last week to check activity and all tumors have grown a tad in size, so, then i get a call today from my coordinator, he says Dr. Hamid needs me to do another scan before my next infuse (Dec 30th) to either confirm or disprove actual growth versus inflammation/pseudo-progression etc. if they are increasing, my trial will end, Incyte Corp. doesnt allow continuing meds if my 1st scan shows disease progression (some trial med manufactures dont require stopping so damn soon, mine does (of course)...
So, fingers crossed, i have 5 tumors that need to shrink the hell back before the 30th, or, its plan B...my tumor on my side is still dying, had 2 biopsys to it (ya i know, WTH? Weird trial stuff) getting it removed is impossible during a trial, it hurts!...i miss you guys, i just dont feel good these days, mentally, physicaly & the beginning stages of spiritually. Ill keep you posted ok? I hope MelanomaGin has spoke on my behalf, i said it was ok. I love each & everyone of you & hope stability is in your lives all the way around, ill never forget what you all have done for me by getting me into Dr. Hamids, love ya all...

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

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caitkastrati's picture
Replies 1
Last reply 12/6/2019 - 4:29pm
Replies by: Threefitty

Hi everyone,

Looking for some hope!

My husband was diagnosed with Stage 3b melanoma at the end of September. It was a few days after our 3 year wedding anniversary and our newborn turning 3 months. Really took us by surprise!

He had a CLND in mid October. 2 nodes came back positive and unknown primary. The tumors were also BRAF positive. He will be starting his first nivo treament in 2 weeks.

I am looking forward to hearing some positive, encouraging stories of others who may have had a similar journeys. I don’t know if it’s the holidays coming up but I have been sick in stomach and constantly worrying about him.

Thank you!

Caitlin

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tedtell1's picture
Replies 5
Last reply 12/7/2019 - 2:26am

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 8
Last reply 12/8/2019 - 12:39am

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 3
Last reply 12/6/2019 - 11:34pm
Replies by: lkb, 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 4
Last reply 12/7/2019 - 6:15pm
Replies by: MarkR, lkb, 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 4
Last reply 12/7/2019 - 11:31am

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 10
Last reply 12/12/2019 - 12:17am

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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