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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sks2019's picture
Replies 4
Last reply 10/21/2020 - 10:57pm

providind anpther update on my , she was admitted into ER on Sept 14 with organ failure , kidneys had shut down and doc told us its going to be only few more hours and we shouldnt go for ventilator and dialysis to support her. I coudnt let her go , I wasnt prepared for it. I asked them to put the ventilator and dialysis. Today Oct 19 she is stll in hospital but dong much better. Blood work looks in normal range ecept for ALT , ALP number which are 3x than normal. Her kidneys have come back and she hasnt needed dialysis or 1 week now. Doctors think she doesnt needs dialysis anymore.
She is very immobile and cant lift a glass of water so needs continous support. The team is now talkig about options
1. Re-challenge temodar which they think caused tumor lysis for her and brought her into ER . She will need hospital stay ( which is already taxing on her ) and doesnt buy her much time.
2. Hospice

I am not sure what to do , I am only taking one day at a time and working on gettting her feel better and feeding her to gain some strength.
How does the end looks like , its so hard to see this suffering.

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kfred0926's picture
Replies 6
Last reply 10/21/2020 - 7:43am
Replies by: kfred0926, Mark_DC, Bubbles

Well, I'm back. My Husband was first Diagnosed with stage 2 b Nodular Melanoma of his Posterior upper arm including shoulder 19 months ago. He had Local Wide Excision and had 3 lymph nodes removed and found to be clear. Fast forward to July 2020. Recurrence in the original scar . Once again surgery was performed. I am including the Derm Report following second surgery. He is now considered Stage 3 B. Cat Cans and brain MRI show no disease. So far, He has had a round of Radiation treatments 21 treatments. He will be on Opdivo once a month for 12 months starting October 6th.
This is his pathology report after second surgery was performed.
Clarks Level-V
Growth phase-Vertical
Mitoic Rate-7-8mm
Perrenial invasion-Not Identified
Tumor Infiltrating Lymphocites--Non Brisk
Pathologic stage- pt4a
Metastases in transit are present.
Oncologist says he want to do Opdivo to keep it from coming back.

Is this the right course of treatment?



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THMoore's picture
Replies 2
Last reply 10/20/2020 - 9:20am
Replies by: Johnjk04, TimCT

Has anyone experienced having their tumor ache on and off while taking the IPI/NIVO Combo? I have a tumor on my liver right below the skin. It has been aching on and off since my second infusion. Just wondering, I take my third dose this Tuesday.


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caman's picture
Replies 4
Last reply 10/19/2020 - 7:05am
Replies by: tkoss, THMoore, caman, Bubbles

This held very true with me. Eosinophils climbed higher and higher with each Keyruda dose and I responded very well. Wonder if anyone else here experienced this.

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Hello all!

For those in the OM World, there is a survey the MRF is conducting.
This Patient Oriented Survey is part of our patient advocacy program, and was designed to gather information from patients on the current state of diagnostics, treatments and outcomes for OM. The information gathered from this brief survey will be used to identify gaps in coverage and ensure that treatments, diagnostic testing and surveillance are fairly covered by all insurance plans.

The survey link is below:

For questions, please contact

Lauren Johnston, MRF-Program Officer Rare Melanoma Subtypes

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ljohnston's picture
Replies 1
Last reply 10/18/2020 - 5:57pm
Replies by: mrbill16323

Hi all!

The MRF has a great new webinar on BRAF Testing by Dr. Jason Luke. Please feel free to take a look! This is two part series, and the next one will focus on the myths around genetic testing and BRAF.

Lauren Johnston, MRF-Program Officer Rare Melanoma Subtypes

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Steve33's picture
Replies 6
Last reply 10/21/2020 - 8:00am
Replies by: kfred0926, tkoss, Anonymous, Baby_Girl

Hi All,

Minor question regarding # of adjuvant Opdivo infusions for Stage 3 folks. I recently moved a crossed the country. My previous oncologist overseeing my Opdivo infusions recommended 13 infusions every 4 weeks to cover the full 52 week year. My new oncologist recommended 12 infusions every 4 weeks, but is ok with doing 13 if I prefer. The general feedback is it really shouldn’t make a difference and that benefits of immunotherapy don’t stop after the last infusion.

It’s approved by insurance for 13 and adverse effects have been minor so far, so I’m leaning towards just getting the 13th infusion. I‘ve always approached my melanoma as attacking it aggressively as much as possible in my treatment.

What have other Stage 3 people done? 12 or 13 infusions?

Stage 3B, Parotid Gland/ CLND, Opdivo

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Baby_Girl's picture
Replies 2
Last reply 10/19/2020 - 10:00pm
Replies by: Baby_Girl, Daisy2018

I was originally diagnosed stage 3 in January 2019. After surgery I did a year of Opdivo. I have been NED. I recently had my routine pet scan. The doctor said there was no evidence of metastasis. But there was some activity in my ovaries again but most likely due to my PCOS (polycystic ovarian syndrome). So I was happy about the ‘boring’ scan. Well the scan report was just posted in MyChart.
This is the impression that was reported:

Study Result
1. No definitive evidence of active residual malignancy.

2. Small bilateral ovarian cyst are again seen, larger on the left. There is now diffuse hypermetabolism throughout large bowel which is likely physiologic. Activity now overlies the left ovary level of cystic region measuring up to 2.4 cm and more likely represents misregistered activity from bowel. However, it is somewhat higher level and localized over the ovary and activity from the ovary cannot be entirely excluded. If this is from the ovary, it may represent activity associated with physiologic cysts. Malignancy would be felt unlikely. This can be evaluated on follow-up imaging.

3. Again, prominent palatine and lingular tonsillar tissues with a hypermetabolism could be reactive or inflammatory/infectious in etiology.

So my concern is what was seen around my ovaries and large intestine. This is what was also written in the narrative part of the report:


There is physiologic activity throughout the abdomen and pelvis within liver, spleen, GI and GU system.

No abnormal soft tissue metabolic activity is seen to suggest malignancy.

No enlarged or abnormal appearing lymph nodes.

No solid organ lesion is seen to definitively suggest malignancy. Again, small bilateral ovarian cyst, on the right measuring up to 1.6 cm and the left 2.0 cm. There is hypermetabolism overlying the left ovary, but may be misregistered activity from adjacent large bowel. However, it overlies specifically the ovary at the level of the cyst and a region measuring up to 2.4 cm and has SUV max 9.5. Activity otherwise within adjacent bowel has SUV max 6.8.

No hollow viscus lesion is seen to suggest malignancy. There is moderate to intense hypermetabolic activity seen throughout much of the large bowel on current exam.

No free air or fluid. No retroperitoneal air or fluid.

So now I am a little concerned and just wondering what others think. Is this something you would be more concerned about? Could it be melanoma? Another type of cancer? Nothing? My next scan is in 5 months. Should I request another scan sooner?

Thank you!

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Fortysomething's picture
Replies 2
Last reply 10/18/2020 - 6:04pm
Replies by: mrbill16323, tkoss

Hi forum
Let you know my slnb came back clear which means I can move on,in what has been a challenging year. Will still have slight worries as it was done 4 months after I had my wle removed from back(12cmx4cm).Hoping they got the right lymphatic channel,will now follow up with 3 monthly appointments for 3 years and 6 monthly appointments for another 2.
Thanks so much for your helpful and supportive advice,it really has helped.

Take care everyone

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LB in Seattle's picture
Replies 1
Last reply 10/14/2020 - 9:21pm
Replies by: gopher38

Anyone else here who had their primary on their vulva? Mine was on my left labia minora; considered a dermal lesion. This is a rare primary location (and I have had a local recurrence in the lymph nodes recently, but my doc says that this does not constitute a metastasis). I am curious to find other women who've had their primary site there. Having the discussion about immune therapy in two weeks now that I've had the recurrence after a year and a half of clean scans. I found the enlarged lymph node about a month before the next scan would have been scheduled.

I am also a daughter of a parent who died of melanoma. While this suggests a genetic cause for mine, testing revealed no known genetic markers. So if you've had this primary site, any chance you had a parent with melanoma as well?

Thanks for any responses.

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Evan2027's picture
Replies 1
Last reply 10/12/2020 - 6:55am
Replies by: hxcadam


My father has been fighting melanoma since Fall 2017. Started under left thumbnail and very small amount in some lymph nodes in left armpit so i think it was stage III at the time. Had upper joint of thumb removed and a couple lymph nodes removed. No immunotherapy. in Fall 2018 detected more in his left armpit lymph nodes so he had surgery to remove all the armpit lymph nodes and was put on opdivo. Tolerated well but developed red spots on back of left arm around april/may. He was put on Opdivo/Yervoy combo and the spots almost disappeared after the first treatment, all went away and he had full course of combo. Developed colitis in September 2019 and was put on steroids through December. Doctor thought he was too weak to put on opdivo alone so waited 4 months between Jan - May 2020. They found a suspicious spot on his left lung in the May scan so they did another scan at the end of June and found that it was melanoma and size had doubled (still small). He also has skin melanoma on back of arm near left armpit. Dr put him back on Opdivo and he got 3 treatments. Had a bad fall early September and started to get back pain which we thought was from the fall. His pain continued to get worse and the last week of September he lost 10 lbs. Went to UVA to get a scan and they found stress fractures in some of his back vertebrae and left kidney was swollen. This past Monday they admitted him to the hospital and found that the lung melanoma had increased in size again but still small so plan was to do radiation on lung and surgery/radiation on the skin melanoma near his left armpit.

I probably got my hopes up way too much because i was reading about how radiation can help jump start immunotherapy sometimes so was hoping that would kick off the opdivo he had the last 3 months. Late wed in hospital they did full body MRI and results Friday morning were bad. About 1/4 the way up his back there are multiple small spine bone mets and one that is larger (not sure about size). Also has a couple very small spots in his neck spine bone.

He is starting 5 day radiation treatment this upcoming Monday to atleast help with controlling the growth of the tumors and hopefully to help with the pain. Of course i want answers now and am thinking about Post radiation treatment options or combo options. For now the focus is just on getting radiation for the spine and lung mets.

Sorry for the long rant but I wanted to give his history. He is 75 years old so I am worried that the Dr might not want to try treatments that have higher chances of side effects and bc of his age and recent weight loss. Also think he will be more limited with any clinical trials that are out there bc of age. If the radiation helps and shrinks or eliminates the mets and he gets some of his strength back should immunotherapy be considered? Should he try Keytruda instead of Opdivo? Can he get one or two infusions of Yervoy again?

I have been reading stories in this forum the past 2 days and they have brought hope and support in this moment. Thank you.

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TinkPeriwinkle's picture
Replies 8
Last reply 10/20/2020 - 8:54pm


A little backstory:

My husband was diagnosed in Dec. 2005. Initial mole was on his L scapula area. A wide excision on L scapula was performed as well as a lymph node removal of a small sampling under his L axilla area which came back negative. He received two rounds of injectable radiation and that was it. His initial staging was Stage II B. He went into remission.

Fast forward to April of 2016 and he was diagnosed with Non-Hodgkins Extranodal NK T-cell Lymphoma Stage III. (Melanoma has been linked to Lymphomas.) He received intensive, around the clock chemo for 8 days, x2 as well as 240 rounds of radiation thereafter. Has been clean of lymphoma since.

Fast forward to 2020. Was diagnosed back in May/June with Melanoma stage III B when a tumor showed up under his L axilla (the original site of the removal of a few of his lymph nodes in 2005). Wide excision of the L axilla was performed as well as a total dissection of all lymph nodes in that region. Monthly IV Immunotherapy using Opdivo was started in July and my husband had received 2 total doses of it when it was noticed very quickly growing masses in the same L axilla region. Biopsy revealed Melanoma. MRI of brain and total body PET was performed. MRI was clear, PET showed my husband now has 14 areas of metastasis including 2 spots in his liver and 3 spots down his spine. He is now an aggressive stage IV.

Immunotherapy has been discontinued and we are awaiting some medication in the mail that will supposedly help prolong his grim prognosis. Apparently he carries the right biomarker that is receptive to this medication. We are also seeking opinions from Huntsman Cancer Institute in Salt Lake City (where he was previously treated for his first two cancers). We currently live in a very remote part of the NW corner of Montana. We arrive to SLC on Tuesday night. His appointments are on Wednesday the 14th.

Seeking guidance and support from those who understand. I am 44 years old, an OB RN, a mother of 5 children we share together, married 21 years this last march. I am about to lose the love of my life very soon. At 43, he is much too young. I hope I can find someone out there who knows what this is like.

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MarkR's picture
Replies 2
Last reply 10/9/2020 - 8:29pm
Replies by: Bubbles, gopher38

Hi All
Been meaning to do an update on progress but it has been a little hectic of late.
After the Brain Mets diagnosis accompanied with the 3-6 month prognosis they gave me SRS to the 14 brain mets and started me on Temozolomide. The first scans were encouraging which showed a good partial response and then I had a follow up MRI and PET scan 4 weeks later that showed a continuing response, but a bit slower this time. All good news but they keep telling me the chemo is only likely to work in the short term.

As you know I was looking extensively at TIL and had narrowed my hospital choices down to the Sheba Medical Centre in Tel Aviv, Israel. I flew out here last week and met with Dr Nathanel Asher who runs their TIL program and he gave me three potential options - TILS, a Micro Biome trial (making use of the gut bacteria from good responders to immunotherapy) and a new trial they have that is similar to kidney dialysis. Essentially they remove a blocker from the blood that improves the immune systems effectiveness against tumours. Not all of these are currently open to Non-Israelis and his view was that as the chemo was working so well for me to stay on that for now. I have chosen to progress with TILS for now and had surgery out here on Tuesday to remove a lymph node from the groin for TIL harvesting. I am still out here in a very nice beachside apartment waiting for them to confirm the sample is OK before I fly back home to the UK. When I return i will have 6 weekly scans to closely monitor progress and as and when things deteriorate I can come back for either the Micro Biome trial or to complete my TILS. Dr Ashers view is to try the Micro Biome trial first and if that isn’t successful go for the TILS then. Unfortunately I have to pay for all of this so we will see how far the money will stretch. The TILS program is about $120k and I have just paid $10k for the surgery so am hoping those TIL cells are viable!!!

The Micro Biome trial has shown an ORR of 30% in a phase 1 trial, but it means fortnightly visits to Israel to take tablets and have Nivolumab infusions. I think it is going to be too expensive for me to be honest as Nivolumab is so expensive. Will keep you updated on progress

Hope everyone is keeping well
Best Wishes

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Aarti007's picture
Replies 2
Last reply 10/8/2020 - 1:32pm
Replies by: gopher38, hxcadam

Hi all, so my SO has stage 4 melanoma and has been on Braftovi and Mektovi for a few months now. Let me just say this has been a harrowing experience and I send everyone going through this lots of love and high hopes. You all are warriors ♡

Unfortunately symptoms of my SOs cancer are showing back up (extreme nausea, vomiting, stomach pain, poor appetite) and we are thinking he may be resistant to mektovi and braftovi now. We have an MD appointment tomorrow with our melanoma specialist but I was wondering if anyone knew answers to my questions below...

-once someone is resistant to mektovi and braftovi does that mean they are resistant to all other forms of BRAF/MEK inhibitor drugs? Or could they be placed on other similar drug like Taflinar or Keytruda?

-is radiation ever used as a last resort to treat liver mets?

Thank you for any insight. Other thoughts and suggestions welcome. Especially anything that might be helpful to bring up to MD ♡

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THMoore's picture
Replies 8
Last reply 10/9/2020 - 10:45am

Finished my second infusion 8 days ago. Now I’m having severe headaches and other symptoms. Told MDA and they gave me the list of side affects. They explained that if my headaches get worse, they want to scan earlier. My question is, I am taking Advil and the headaches go away fairly quick, but come back not as bad. If there are tumors or lesions in my brain, are the headaches constant of do they come and go ? I do know that headaches are part of the symptoms list, just asking what all of you that have gone through this know

Thanks Trent

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