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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Broersma's picture
Replies 1
Last reply 5/15/2020 - 12:09pm
Replies by: Bubbles

I have Stage IV Melanoma and Mutliple Sclerosis. I am currently on Tafinlar/Mekinis, which has worked well to reduce the tumors (multiplelymph nodes involved). As we all probably have been told, the Tafinilar/Mekinist combo normally is only effective for 9-14 months. I have been on the treatment for almost 2.5 years and, except for the unfortunate side effects, am doing well. Should the melanoma spread to other areas, I am told the next step would be immunotherapy. However, since I have MS, I have been told by experts that I am not a candidate for immunotherapy. I'd like to know if anyone has both advanced Melanoma and MS and, if so, have you had immunotherapy. It's hard to hear that, in the event the cancer spreads, I have not other treatment opnitions. I appreciate your help.

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Hello,

I was diagnosed with Stage 4 Melanoma in 8/2017. I have mets to multiple lymph nodes. I have been on the Tafinlar/Mekinist Combo since then and have responded very well. Mosty all of the lymphy nodes are now within normal limits. The side effects have been difficult and many. I am on intermittent dosing. In December of 2019 I was hospitalized for congestive heart failure. I was taken off the Mekinist as that seems to be the culprit. After consultation with a Melanoma specialist, I cannot resume the Mekinist until I have an echocardigram that is within normal limits. With the elimination of the Mekinist, the side effects of the Tafinlar seem to be more intense (nausea, vomiting, diarrhea, chills and now intense joint pain). I learned that the combo of the two drugs helps to control their toxicity.
Although the dosage of Tafinlar has been reduced, I still have significan discomfort from the side effects. My quality of llife.\ is not where I would like it to be. Anyone else develop cardiac problems with these medications?

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LH2000's picture
Replies 3
Last reply 5/5/2020 - 7:14pm
Replies by: Bubbles, LH2000

My wife diagnosed with stage 4 in Oct 2018, no recent primary but had small stage 2 in 2006 w clean scans for 5+ yrs and stopped by insurance and STD of care.

1. Ipi Nivo combo, 2 infusions and then grade 3 AE in hospital 2 days. 4 month taper on steroids, no treatment. Initial 25-30 pct shrinkage. Also SRS radiation for some brain Mets.

2. Finally resumed Nivo only for 3 treatments. Growth.

3. Due to NRAS mutation, tried Trametinib MEK inhibitor solo 4 mo. Initial some response, then growth.

4. Tried Nivo plus olapaparib due to ATM mutation. Growth.

5. Back to Ipi 3 mg solo plus Leukine injections to help reduce toxicity. Garde 1-2 AE. Oncologist wants to stop ipi.

6. Recommend TMZ plus Hydroxychloroquine, it works as anti- autophagy for cancer. Due to regrowth of brain Mets. We're doing more SRS radiation instead.

What do we try next?????

Need a good COMBO therapy, our doc doing too much single agent, doesn't work!!!!

Nktr-214, anti lag-3, IL-12 or 2, TIL, more NRAS focus with cdk46 or other inhibitor?????

Help!!!!!

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Butterfly74's picture
Replies 13
Last reply 5/8/2020 - 4:58am
Replies by: Butterfly74, fairystar, MLD1973, Anonymous

Hi, I am recently diagnosed with Stage One melanoma on my upper back.

Depth of. 7mm and told I am 1a. I have posted before about my strong anxiety and had some lovely replies.

My doctor said the statistics are about 97% over five years of surviving this and others have replied to say similar. I was trying to hold on to that hope to help me try and get through this as I am really struggling. I wish I hadn't but I entered my pathology details in a melanoma prognosis calculator and it says I only have a 90% chance of survival over ten years. This may still seem good statistics but
this info has has totally terrified me, I don't want to take anything away from the warriors on here who are struggling with worse odds, but I feel like I won't survive this. How accurate are these calculators? One calculator also said I had about a 7% chance of a positive node during a SNB but my doctor only did the WLE as said I didn't need it. I'm scared I'm really at Stage 3, this has taken over my life and I'm not functioning very well with normal life.

How do people cope with this always over our heads. I feel like I'm waiting for the next shoe to drop.
Sorry for the long post, if anyone can help me please.

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Anonymous's picture
Replies 2
Last reply 5/3/2020 - 7:08am
Replies by: Anonymous, Julie in SoCal

Hi, I have read a lot of reassuring and positive replies by Janner. Is she still on this forum and able to help? I am hoping there is a support group for Stage One people as I am newly diagnosed and struggling with the uncertainties of this. I admire the strength and courage of everyone on this forum and need some help. There seems to be many people who were in my position and are now Stage 4, I worry about the cancer spreading as it seems like it happens a lot.
Thank you.

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Hi all,

After a whirlwind 2-months it seems like this isn't going to end anytime soon. Two months ago I had a 2b melanoma removed from my ear with WAE and SLNB. Negative on SLNB and margins were clear. About 5 weeks after surgery I had a skin check for a new mole that appeared on the ear that just had the WAE. The derm said it looked normal but because it was new we were going to remove it. He said that even if it was melanoma it would be small and a new one rather than a resurgence.

Results came back today and it was moderately atypical but not melanoma. I'm supposed to go back and get margins around this one. Derm said it was not much to worry about and would just be some more off my ear (what's left haha). I spoke to the surgeon and he seemed concerned that this could be a resurgence and would send me to stage 3. I'm guessing he was concerned that the pathologists missed that is was melanoma? or perhaps was turning into melanoma? but from the old one and not a new one?

I haven't received the pathology report yet but the internet is less than helpful on moderately atypical. That seems more often used to describe the mole itself. I think it would be a coincidence that I had a new mole that was unrelated, but it didn't look like resurgence from what I could find. Anyone know more resurgence/atypical versus melanoma? I'm confused from the different perspectives from doctors.

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*NOTE* somatic mutations are within the cancer tumor and are quite common. It is believed that a BAP1 germline mutation is not common, but the overall incidence is currently unknown

Hello All,

I have quite an interesting cancer journey. I was diagnosed with uveal (eye) melanoma in June 2015. In August 2015, I had treatment, enucleation (removal of the eye). During recovery, I found out my sister had cholangiocarcinoma, also a rare cancer like uveal melanoma. Unfortunately, my sister succumbed to the disease in February 2016.

In June 2016, during one of my routine surveillance oncology appointments, I was offered to be tested for a BAP1 germline (within my entire body) mutation. Not so surprisingly, I tested positive for the mutation.

BAP1 germline mutation (BAP1-TPDS tumor predisposition syndrome) is a protein on the BRACA1 protein. The mutation is known to cause cutaneous melanoma, uveal melanoma, and mesothelioma. A laundry list of other cancers is also suspected to be caused by a BAP1 germline mutation.

I have participated in quite a few studies (Ohio State University, University of Hawaii, and NIH). Still, there is no known treatment for this syndrome.

I'm hoping to find and connect with anyone else who may have a germline mutation.

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Anonymous's picture
Replies 7
Last reply 5/6/2020 - 12:05am
Replies by: KAP715, Anonymous

Hi I have been diagnosed with Stage One Melanoma on my upper back. I am very worried. I have read that body site can influence prognosis and that when found on the back it does not have a good prognosis as compared with extremities. Can anyone explain this and also are there any Stage One people who have had no spread from a primary melanoma on their back to give me some hope?
Thank you for your help.

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S.lavelle's picture
Replies 2
Last reply 5/1/2020 - 2:51am
Replies by: S.lavelle, sandyd77

Hi I am starting this treatment tomorrow. Could anyone give me and info on what to expect please?

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caman's picture
Replies 1
Last reply 5/1/2020 - 4:01pm
Replies by: Lucas

Hello friends, Has anyone else experience high sugar levels with keytruda. Mine is presently 150 and I been on medication for about one month. I understand in small percentage of people it can cause diabetes. Any concerns here??? All the best to everyone!

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Bubbles's picture
Replies 13
Last reply 5/10/2020 - 12:01pm

Ten years ago today, I had the right upper lobe of my lung removed three days after having radiation to a brain met, all due to melanoma, diagnosed at Stage IIIb seven years prior.
Today, I share these photos and my story, hoping that they provide some small joy, some spark of hope, a message of beauty and love, to those that are hurting. You are stronger than you think. And for all the pain and suffering - there is beauty ~ still.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/04/across...

Much love to each of you. les

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Tsvetochka's picture
Replies 4
Last reply 5/11/2020 - 8:03pm

I am waiting for confirmation from my doctor, but if I'm reading these PET scan results right, they mean NED!!! So, my first question is for those who have reached that point: how did you celebrate? One year from Stage 4 diagnosis to NED?!?!

And then: what kind of follow up should I be expecting after this. We did about nine months of Keytruda, and now I think we're DONE. What happens after this?

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Hello everyone,

Hope you are all OK during the chaos cuased by the virus.

Anyhow, my ALT (330) and AST (110 ) are stubborn and went up by 20 and 22 respectively, so the liver specialist will go from 35mg of prednisone to 55mg and then taper off by 5mg per week. It should bring those levels down, but I am disappointed at the prospect of another three weeks here. I have been here for two weeks already. I guess I am lucky to get admitted to hospital while the virus is going around. Ah well, at least the tumours are shrinking! I just hope the response continues.
Thanks in advance to Melanie for the warning! You were right.
I haven't really had side effects from 35mg but imagine 55mg will bring some side effects. I hope I don't get hungry as the meal portions here in Japan are not exactly big! No snacking either because of glucose level risks!

All the best,

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SRVilly's picture
Replies 6
Last reply 5/1/2020 - 1:15am
Replies by: Tsvetochka, Anonymous, Beany, Bubbles, Rob is grateful, JudiAU

Hello everyone,

It's been a while since I've posted, here is a quick recap:

May 2016 DX with stage 1b on right calf
June 2017 found a lump in right groin, biopsy shows melanoma
July 2017 CLND to right groin all clear
Dec. 2017 PET shows 10 "spots" on liver
Jan. 2018 started Opdivo only due to pre-existing Colitis
March 2018 PET shows no uptake or "spots" on liver (never showed again in 2 years of PETs)
Dec. 2018 Hemoglobin started taking a dive
Dec. 2018 PET shows two spots in small bowel
Jan. 2019 Had colonoscopy, endoscopy, camera endoscopy to try and find the source of bleed and take a look at small bowel, but it is in a spot that they couldn't see
Feb. 2019 Had surgery to remove two spots in small bowel...yep...Melanoma
March 2019 Restarted Opdivo
April 2020 after a year of clear PETs Onc says its time to stop Opdivo and only see her every 2 months

So here we are. My first month without an infusion or Dr. visit in 28 months. I am thrilled not having to go to the hospital every 2 weeks (especially now with everything going on), but there is certain comfort in getting blood work and infusions every two weeks. I knew I couldn't and didn't want to be on Opdivo forever...28 months is long enough, but I was lucky and had no side effects and, except for the two surgeries, I didn't miss any work due to the treatments. I'll still have PETs every 3 months for the rest of this year, then after all is well, spread them out longer next year.

I am so thankful for these results. I'm just hoping the Opdivo has taught my body to keep this disease at bay. I am excited for this next phase of my life. I know it will always be in the back of my mind, but I am hoping the lack of Dr. visits and infusions will keep me focused on the good things.

Best wishes to all of you. Stay safe.
Steve

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KAP715's picture
Replies 9
Last reply 4/30/2020 - 9:06pm

Had a recurrence in my neck 9 months after a neck dissection and adjuvant pembro obviously hasn't worked for me. I have a subcutaneous tumor right underneath the incision from my previous surgery. Can anyone share their experiences with T-VEC? That's what my onc is recommending for the next phase of my treatment. Unfortunately PD-1 immunotherapy isn't working for me.

Diagnosed stage 2 Oct 2014. Stage 3b May 2019.

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