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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sj's picture
Replies 6
Last reply 6/25/2020 - 5:10pm
Replies by: Summer S., Sdmotorcop, sj, Edwin

hi folks,

I was diagnosed with stage 2B back in January. I had melanoma ex cellular blue nevus in my scalp. This was successfully removed via surgery, and my lymph nodes were clear as well.

In April I developed some hip pain. I put this down to not being as active due to COVID-19. I was no longer golfing and was sitting for large periods of the day.

As the months have gone by the pain has gotten worse. At the end of April I bought a Peloton bike, and I've cycled close to 300 miles and lost 16lbs or so.

The hip pain still persists. Actually I played golf a few weeks ago and I noticed the pain was gone for a few days after golfing (and I'm golfing tomorrow again so I'm interested to see how I am afterwards).

I have my 6 month CT scan next week, with results on July 6th. They will be scanning my pelvis so if there are bone mets in my hip they'll be able to see it.

The pain is in my hip flexor which is common for cyclists, but the pain did appear before I got the bike so I'm not sure if cycling is just making it worse or if it actually is bone mets or not. I'll find soon I guess.

My question for anyone that had bone mets - did you have bone mes without any other metastasis? I was under the impression that bone mets were a sign of advanced cancer, and that it would typically end up in your organs first, but perhaps that's not the case.

Also, for anyone with bone mets did it hurt? The pain I feel honestly feels muscular. I only really feel pain when sitting or getting up, but if i'm walking or even cycling I don't feel it at all then.


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Sdmotorcop's picture
Replies 3
Last reply 6/25/2020 - 12:33am
Replies by: MelMel, Sdmotorcop, TimCT

Hello All,
I hope all of you warriors are fighting the good fight! I know I am..

I started ipi after my progression to stage 4. I had been on Nivo since last June and almost made it to the 1 year mark. After my second dose of Ipi, I noticed these transient fevers (the wife says I’m going through menopause). They were short lived and never went higher than 100.2. I received my third dose of Ipi two weeks ago. The fevers seemed to go away for that two week period of time. Last Friday I felt one of those fevers coming on. This time it went to 102.6 and stayed there until I took some Tylenol (500mg). This brought it down to a manageable 100.. The Tylenol only lasted for a couple hours. These fevers start around lunchtime and continue throughout the day. Nights are fun because the fever sort of breaks around midnight. The sweats that come along with the decrease in temperature are a fun way to sleep (can you say soaked. Aside from fever, there is a fairly substantial amount of body aches That comes along with it also. I’m set to receive my 4th dose on Friday.

I did a search and found a couple of postings for fever related side effects for ipi. It did not go into the Tylenol / Motrin Question I was looking for. My oncologist wants me to do 325 Tylenol then 400 Motrin every 4 hours. I tried that combo yesterday and was stuck with a temp around 101.

I was thinking about going with a longer acting ibuprofen like Aleve. The yo-yo effect between the Tylenol and Motrin is pretty hard to regulate.

The posts I located from other warriors were from around 2017. I’m just wondering if there is anyone else going down this road while on ipi.
(All labs came back pretty normal. Liver labs actually went down along with T4 labs)..

Fighting melanoma since 2004..


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tracievh's picture
Replies 10
Last reply 6/27/2020 - 12:01am

I was diagnosed with nodular melanoma Feb 28th 2020. It was on the back of my leg above my knee.
I had a PetScan prior to surgery which was clear.
Had surgery March 13th - WLE and SLNB. WLE had no margins, there was a very small amount of cancer in the lymph-node. It did not exit the lymphnode but I was told that did not matter. This bumped me to Stage 3A. (From 2A)
I am positive for the BRAF mutation.
I started Opvido just one week later from surgery.

I have had 4 treatments so far. I will receive 12 total. No side effects thus far. No new lumps or skin lesions. (I just saw my dermatologist a few weeks ago who did the skin and lymphnode check)
Because of this, my oncologist wants to wait two weeks before my 6h treatment to do a CT Scan.

First Question: Does that sound right on the scan? 6 months if no new concerns?

I am still healing from the surgery. The SLNB site developed into a seroma that got infected. Had a drain a for a while. I had a skin graft about 5 weeks ago now. It is doing okay, but there are two holes that have not filled in and I have another seroma below the wound right in the crease of my knee.. I see my surgeon this week.

My oncologist said that if I tolerate all 12 treatments and have clear scans, he would consider me cancer free. After all the reading I have done, I am struggling to believe that.

Second question: Do most Stage 3 melanoma diagnosis eventually have a recurrence?

Third question: I am terrified to be in the sun now. Can we be in the sun with sunscreen on? I am not talking about baking in it all day.
We live in a location where we have a very short summer, and we like to go boating. I feel like I can't even sit in the sun at all now. (With sunscreen on!) I have on history of a bad sunburn when I was a teenager where I fell asleep on my back. Other that, I have had some sunburn on my shoulders and chest, but nothing like a blistering kind. I DID use tanning beds to get base tan because I am fair skinned - which I will never do that again.

Thank you in advance for any help!

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THMoore's picture
Replies 13
Last reply 6/27/2020 - 4:22pm
Replies by: MelMel, Mark_DC, THMoore, Bubbles

I had a reoccurrence in my neck just two weeks post radiation and surgery. I have 5 extremely small active nodes that can’t be felt and 1 node that is pea size. I just received my second monthly infusion of Opdivo. So it’s been once month exactly since starting. I have no side effects except a little tired. I keep feeling my neck to see if the node is getting smaller. I was wondering how long it took any of you on Opdivo or Keytruda started to notice a difference? I asked to be put on TVEC or the combo IPI but MDA said to stat the course. Getting very anxious. Thanks everyone


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Scooby123's picture
Replies 8
Last reply 6/19/2020 - 1:04pm

Hi all hope you are well as can be. Just update you my scans back still NED been on treatment nearly 3 years. Oncologist said I can choose to stop but able to re start if returns. Keydruda is treatment I been having. Part of me nervouse but also be nice to have a break. .


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maryb-z's picture
Replies 6
Last reply 6/22/2020 - 2:21am

My local onc, not a melanoma specialist is recommending I continue Opdivo for another year. My recent PET showed NED as well as the one prior. I understand that all my recurrences the last 11 years are alarming but an article from Dr. Weber shows no real data to continue Opdivo 3 years.

Dare I share this with him? I'm handling Opdivo well now that I'm on 5mg prednisone daily but would like my life to return to normal. TIA

No One Fights Alone

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poppymac's picture
Replies 0

pet scans are not always accurate I had one 3 jan 19 and went for results on 22 jan 19 to be told that there was evidence of disease in both my appendix and bowel though very small and we would fight it aggressively
this was after my melanoma brain met in dec 18 so he was saying it had spread
to be honest I was nearly numb listening to him
he booked me in for more tests and said I would need appendix removed
heard nothing until mid march when ct scan was clear
had bowel scopy in april which showed nothing and appendix removed in june which showed nothing


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Affinity4Mountains's picture
Replies 5
Last reply 6/17/2020 - 8:37pm

I need some ideas or opinions on how to pursue continued treatment. I had my gallbladder removed recently and it had several small tumors inside the gallbladder. A recent PET scan shows no other evidence of disease in my body. In November 2019 I had one lymph node removed in my groin and went on Optivo starting in January 2020. A PET scan in January showed disease in the Liver area and a lymph node was biopsied and shown negative for cancer - apparently it was not this lymph node that had cancer but the nearby gallbladder (not sure how they mistakes this) so I had melanoma in gallbladder for 5 months! My recent PET scan in May showed that the tumors in my gallbladder grew in size from January to May.

Question - do I stay on Optivo since the tumors grew? Add another immunotherapy like Yervoy or move to BRAF /MEK inhibitors since my tumors are BRAF v600e? Or clinical trial?

Has anybody Taken and experienced BRAF /MEK side effects - what are those like?


Affinity4Mountains Stage 4

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betsyl's picture
Replies 2
Last reply 6/15/2020 - 8:46pm
Replies by: ed williams, Bubbles

Hi there,

Been a long time since I was here. I have a question for you.

How often is melanoma less responsive after a recurrence as opposed to treatment-naive situations? Always less responsive after recurrence? Usually? Sometimes?

Does anyone have stories of:

1. Achieved NED through combination of surgery + Keytruda. Stayed NED for ~18 months.
2. Recurrence.
3. Back on Keytruda (or Opdivo).
4. Become NED again? Or rather than becoming NED again, has it stayed stable for a really long time (years) after going back on Keytruda or Opdivo?

My husband's recurrence is taking the form of multiple small subcutaneous nodules. Very scared.

Thanks for providing this space. Best wishes to you all.

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poppymac's picture
Replies 4
Last reply 6/15/2020 - 12:42pm

hi,i had 3.5mm mole removed from right cheek in jan 2018
WLE on april 10 2018 was clear
pet scan on june 1st showed node involvement
neck dissection in july 18 showed 13 nodes infected
started pembro on sep 13 stopped after progression showed on nov 30 brain met
dec 27 SRS on met and no treatment since but ned
my question is did pembro work despite being stopped early

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Julie in SoCal's picture
Replies 11
Last reply 6/22/2020 - 7:33pm

Julie & Sheri's Awesome Adventure 2020 is on! And I only have one more sleep!

Subie Blue got a clean bill of health from the mechanic, I've been wrapped in bubble wrap by my doctors. This trip is on like Donkey Kong!

Today I just have the last minute things, like ice, and the cooler and hitching the trailer. Then we are off bright and blurry tomorrow morning. Have I told you I cannot wait?

See you again in two weeks!!

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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Ennis1234's picture
Replies 1
Last reply 6/14/2020 - 1:02pm
Replies by: Bubbles

Anybody from CO with brain Mets??? What have you done??


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sing123's picture
Replies 16
Last reply 6/27/2020 - 1:59pm

Hello dearest Hero Mentors. Had a delightful brief reprieve but the cancer is back and in my brain. I’ve 3 lesions discovered recently on an MRI and am
going boldly into whatever I need to do. Starting with stereotatic radiation.

Can anyone please provide advice on this type of radiation? Is one preferable to the other, such as is cyber knife better than the generation of Stereotatic preceding?

Should I follow up with immuno again? Was on Opdivo am my oncologist told me the Opdivo has worked as it has not returned to the rest of my body, however the brain is very difficult to penetrate with immunotherapy.

Will I live? I have so many questions. I have so many hopes.


Diagnosed 4/18 Stage IIIc; WLE on head, started Opdivo 5/18; new spots 10/ 2018; 2nd surgery; Last Opdivo 3/19. 3 brain mets recur 6/20; now Stage IV; SRS + starting Ipi/Nivo 8/17 2020.

I'm Still Here!!!

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marta010's picture
Replies 2
Last reply 6/11/2020 - 12:22pm
Replies by: marta010, Scooby123

Hi - anyone out there changing to the new Keytruda 6 week infusion schedule? Dosage is increased from 200 mg to 400mg. For those who have switched, have you experienced any increase in side effects? My husband, Larry, will be starting the new schedule in July. Thanks for any feedback. Take care.


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casagrayson's picture
Replies 1
Last reply 6/10/2020 - 10:29am
Replies by: Bubbles

I just heard of another loss. The young man, Clint, was not on this board. He had melanoma several years ago, but had not had a recurrence. In March, he was taken to the hospital with pain and swelling in his legs -- turned out to be blood clots there and in his lungs. Unfortunately, due to COVID, no family members were able to be with him or to see him at the rehab facility when he was moved. He didn't have a medical POA (and was not married) so no family member was updated on his condition or given the results of the many scans and biopsies they performed while in the hospital. It turns out that he had an inoperable brain lesion and many other lesions throughout his body. He was moved to a hospice facility on Wednesday and his family was allowed to finally see him. He passed away on Thursday. He was 44.

Folks, get your affairs in order. Make a will, sign a POA (EVERY time you enter the hospital -- because each facility wants their own), talk to your family about what you want. They are hard conversations to have, but all of us need to do -- not just the melanoma patients! This pandemic has shone a light on the deficiencies in our medical systems, and this is one way you can protect yourself. Clint's dad spent a month in a city far away from his home begging to get information about his son, and to be able to see him. Don't let this happen to you or your loved ones.

Strength and Courage,


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