MPIP: Melanoma Patients Information Page

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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Replies by: Annalive, Bubbles

Hello All,

After 3 1/2 years of remission I had a 4.5 cm Melanoma removed from the lining of my stomach wall. I am currently N.E.D. however, as this is the 3rd re-occurance in 10 years it is obvious that something systemic is needed.  My Onco did genetic testing nwhich found that I have 0% PD-L1 so Opdivo is out.  I am BRAF pos so could take BRAF and MEK inhibitors.  Quite honestly any pharmecutcal scares me.  And, If I am NED then how do we know if it is working as ther is no tumor to track.  So, my question is... do any of you know of bio-markers or tests which would track something in my body to indicate if a protocol is working for not?  If I am going to endure a treatment then I would at least like to have some way of knowing it's validity.  I have had 3 surgeries over the past 8 years... plus the original sutaneous melanoma which was removed 25 years ago.  I have never taken pharmecutcals but have taken a more Integrative path using hypethrmia, Highdose Vit C, Mistletoe,etc... Any insights much appreciated.  Thank You ,  Ann

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Jubes's picture
Replies 3
Last reply 5/25/2018 - 1:55pm
Replies by: Mat, Jubes, Bubbles

Hi friends! 

Just checking in after long absence due to full time work and family and generally enjoying life! Had PET and brain MRI last week and no signs of any cancer 18 months after lung resection and 3 years after stopping Keytruda. 

My PET lit up like a Xmas tree with my arthritis/spondylitis through my entire body which of course is also quite painful most of the time so my onc has suggested having another go of infliximab which worked a treat last time. However whether a coincidence or not, that’s when the cancer in my lung started growing again. Now that’s been cut out he thinks it’s worth another try. Any thoughts? At the moment I am managing full time work and most everything I used to do. I suppose I am worried if I do the infliximab it might allow the cancer more room to grow and if I don’t and the cancer doesn’t return and I live longer, the arthritis will really affect my later quality of life...


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marta010's picture
Replies 4
Last reply 5/24/2018 - 2:57pm
Replies by: marta010, MovingOn, Bubbles

Hi all - just wondered if those of you who experienced adrenal insufficiency as a side effect of Keytruda ever considered taking a stress dose of steroids in conjunction with the infusion to counter the potential of adrenal insufficieny. My husband has had several bouts of adrenal insuffciency over the past many years and has been on hydrocortisone replacement therapy (20mg daily) during this time.  He ended up in the hospital this weekend again the same situation after his 2nd Keytruda infusion.  He is tapering off the high dose he was on in the hospital and will be on a new maintenace/replacement dose of 30mg daily to provide some additional relief as he resumes Keytruda infusions.  One of the docs suggested that he increase his hydrocortisone dose on the weeks he has his infusions (3 x normal for 3 days/2 x  normal for 3 days) - not sure if any of you have done this.  Also curious how long of a break you may have taken when experienceing adrenal insufficiency - we're delaying his next infusion by 2 weeks to see how his cortisol levels react.  Thanks for your input.


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MelanomaMike's picture
Replies 6
Last reply 5/23/2018 - 8:31pm

Hi Family, boy, another day of no appetite, i cant even eat Saltines for cryin out loud, its been atleast 5 or more days since my last normal meal, i gotta have them check me out, ive "muscled it" through long enough & nothings gettin better, i went out & got me the THC/CBD oil, the bottle/dropper type it did take care of my body pains but didnt help my hunger "surprisingly" so weak, and of course my lack of appetite could be from my tumors in my lungs, not nessesarily from the Yervoy & Opdivo...i need a lil' TLC from the team, get me back on track, i cant handle the nausea anymore & dry heaves...wish me the best, ill have my father in law take me...Take care guys...Mike

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jnell77's picture
Replies 2
Last reply 5/23/2018 - 10:43am
Replies by: Tset, guynamedbilly

Hi. I had a small itchy mole removed last week via scrape biopsy. To my doctor, and my, surprise it came back melanoma. Now a week later I am scheduled for a wide excision of the area and a sentinel node biopsy scheduled for this Friday. Three months ago I lost a friend to Melanoma, she did not get scans yearly as she was supposed to, and I am scared to death. My path report so far only says a Clark’s of at least IV and a depth of at least 1.0. The scrape did not grab a clean margin I suppose? My surgeon, on consult, did not seem very concerned and he was basically telling me that I should try to settle myself a little. He did a quick check of axillary and inguinal nodes and didn’t say much. So, now everywhere he checked I feel like it’s bumpy and swollen and painful....I think my mind is playing tricks. Has anyone else had the feeling they are going crazy because They assume that the cancer is everywhere? 

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patrick212's picture
Replies 15
Last reply 5/24/2018 - 2:18pm

Hi – I’ve been browsing this board for a while, so it’s probably time to come forward and say hello!

Pardon me if my lingo is not quite proper…  I was diagnosed with stage IIIc metastatic melanoma (T3cN1aMx) in February 2014 at age 38. The tumor on my back was removed, and later, so was a huge patch of skin. I underwent a sentinel lymph node biopsy under my right arm, which wound up being positive for melanoma. I soon had the remaining lymph nodes in the area removed -- 2 out of 12 of which contained melanoma.

At that time, they also discovered a few cancer cells in the tissue surrounding the lymph nodes, so I had a few weeks of radiation which extended from the site of the initial tumor, under my right arm, and partly across my chest.

My first post-surgery/post-radiation CT scan that October showed no evidence of disease (yayyyyyyyyy!), and that happy trend continued for four years, until two months ago.

After a routine CT scan in March 2018 (at age 42) showed a large abnormality under my LEFT arm – a needle biopsy revealed it was a melanoma recurrence. I went back into surgery last month to remove it, as well as the other lymph nodes in the area, none of which contained melanoma.

My surgical oncologist recently offered Opdivo as a treatment option – though he said that, personally, if he was in my situation, he would play a “wait-and-see” approach instead. Of course I’m not a medical professional, but my thinking is that if I have rogue cancer cells in this one lymph node that suddenly multiply after four years of NED, it seems likely that I probably have other other melanoma cells hanging out somewhere in my body.

Have you been in a similar situation? What did/would you do if you were in my shoes? Thanks in advance for any support or advice you may have.

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Sharon93065's picture
Replies 9
Last reply 5/23/2018 - 8:32am

Had my monthly oncologist visit this am. He said my 5th petscan shows all the tumors are shrank, the latest new one is 'non measurable!"

Brief history, stage 4 metastatic melanoma!  Diagnosis a little over a year ago, starting with xray that showed lung mass, the ct scan, then petscan which showed 7 tumors throughout glowing. Armpit, groin, chest, lung mass, node by pancreas. And one on lower back to right and above waist. MRI clear. I had 3 of the 4 combo treatments, yervoy/opdivo. Then liver enzymes toxic. 5 months of prednisone, then started 1mg of opdivo maintenance which is a very low dose. First time my dr prescribed such a low dose. He was concerned with the side effects.

Wow i thinlk we can say i am NED!  Thank you Lord!  And thank you Immunotherapy.  And thank you all for sharing on this forum and helping me and others on this journery.  I recently read on this forum about someone who was NED who developed pancreatitis on maintenance treatment.  So i know i am not healed, and the beast can raise his ugly head again.  But for now I am good!  Still have wiped out thyroid, on 125mg of synthroid now.  I take glucosamine chondrotite for my osteoarthritis.  I had it before but now it's worse. Will be glass when weather warms up and i can get my water aerobics going again.

Every Dr appt i tell Mr Wang, Kaiser Woodland hIlls, someting that i learned from this forum.  I think I am education him lol!

Thank you all for your support and advise.  And am happy to shre how it helped me.  It was because of this forum I knew that 3 of the 4 combo treatment was ok.  That the enegizer bunny kept working anyways.  And what to do for  my rashes/hives.  It has really helped. God Bless  you all, Sharon

PS My neighbor said it was my daughters dog that cured me ha!  3 yr old Sadie, labradoodle who won't leave my side.  I live in a studio by Michele and she shares her dog with me. 



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Coragirl's picture
Replies 12
Last reply 5/22/2018 - 11:39pm

Today, I had a conversation with a friend about what was going on with my husband. I don't understand why people don't know what to say, just say I'm sorry, it sucks anything but you need to get your shit together because your husband is going to die! Wow. Needless to say I will not be speaking with this person anymore. She doesn't know anything! She doesn't know about immunotherapy, or the experience and expertise of my husband's doctors. Of course when she said this to me I just broke down, it is only now that I am thinking of all the things I could have said. I just needed to get that off my chest. Thank you for reading. I am going to go and read about all the amazing survivors on this board now, maybe send her a few. 

Amie Taylor

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MelanomaMike's picture
Replies 5
Last reply 5/22/2018 - 11:44pm

Hi Family, boy am i messed up, as i told you, i started the combo ipi/nivo last Friday {5/11/18} and now on day 10 days later the nausea is worse {now with vomiting} my apitite is completly gone, if it wernt for my wife making me drink Ensures, for one, it gave me something to throw up {excuse the visual}, two, it put some much needed nutrients in me. I think my last meal that i realy could eat was days ago, 2 maybe 3 days ago??...Iv had real bad headaches, not constant, just when i lean down, a throbbing type pain...

 Can i ask, does anyone know if THC & CBD can help with side effects? please reply, iv read that it does but would rather hear it from the horses mouth...

 You all take good care, i know im trying....Mike

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Susanlee528's picture
Replies 8
Last reply 5/22/2018 - 1:42pm

Hi all! I just had my 6th Opdivo treatment and it was the worst one yet.  The fatigue has gotten worse each time. After this last one, I slept for 26 hours, got up and ate, and then slept for 9 more. Is that typical? Does it keep getting worse? I keep hoping it will even out and I will adjust at least a little bit, but so far it has just gotten worse each time! I’m having it every other week and don’t want to go to monthly in case it’s worse. Is there any hope in sight??

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jennunicorn's picture
Replies 6
Last reply 5/22/2018 - 7:35pm

Hey friends! Hope you're enjoying the weekend so far. 

I wanted to update about my knees. All throughout the 2 years of treatment I had pretty crappy joint pain. It was not new, I had dealt with some level of joint pain prior to any immunotherapy, but it definitely got worse after infusions, especially my knees. 

Since I stopped treatment in November most of my joints have been doing fine, except my knees. They continue to hurt like the dickens so my PCP had them x-rayed, didn't show much besides some cartilage loss. So, I did 6 weeks of physical therapy in the hopes I can strengthen my legs to support my knees better. The left one is doing better but the right knee continued to hurt and not feel any improvement. Next step I figured would be to see an orthopedic surgeon to get a cortisone shot. She ordered an MRI and BAM... lateral meniscus tear and a cyst! An injury like that was literally the furthest thing from my mind. I never did anything that I can recall that would have caused a tear. I was thinking osteoarthritis this whole time. 

So, surgery to repair it will happen in July. I have many miles left to put on these knees so I hope once she gets in there it is repairable. Also means I will be stuck at home for 4 weeks afterward recovering... but hey.. I will take knee injury surgery over the scary unknowns of cancer surgery any day!

My next set of scans is a month away... it's been very strange going almost 6 months without scans. I am trying not to get anxious about those just yet..

Since this month is melanoma awareness month and I have an awesome job with an awesome primary care company, I was able to send out a huge email blast to all the doctors and nurses in the company reminding them about melanoma and to bring up skin checks with their patients. I gave them handouts to give to their patients and a page of facts. It was amazing the response I got, how grateful they were to have that information. There are many facts about melanoma that a primary care provider does not know, and I had many of them respond with, "WOW I didn't know that! Thank you!". There is even a sign at the front desk about melanoma awareness month so patients can see it as they check in. My small mission to bring awareness and to make skin checks a regular conversation between all primary care providers and their patients has begun.


As always, sending all the positive vibes and hugs to those that need it right now. 


Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

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quickcuda6's picture
Replies 4
Last reply 5/24/2018 - 5:52pm
Replies by: quickcuda6, Patina, lindanat

54 year old male with Stage 3C  I recognize that the side effects of treatment piece has been addressed many times here but still felt that it may be beneficial to some for me to describe what happened to me with only 3 of 18 Keytruda treatments remaining.  Started Keytruda in Apr 2017 to treat Stage 3C Melanoma.  This was after two surgeries and 10 weeks of daily radiation treatment.  For the first six months, everything was pretty good. Moderate daily fatigue and minor rashes, and then six months into the trial hypothyroidism was discovered.  Went on 125mcg of Levothyroxine to adjust and everything was good.until January 2018.  The day after receiving the 15th treatment, everything went to hell.  Severy flu-like symptoms with constant cough, fever, nausea, night sweats, debilitating fatigue, severe dry mouth, accellerated heart beat, dizziness and a host of others.  After several ER visits and several more to oncologist, they could not determine a cause but tested for many of the usual suspects.  My next treatment (February) was postponed and on March 1, was put on high dose Corticosteroids. . March continued with severe symptoms but also slow improvement.  A host of scans and blood tests were completed to figure this thing out.  There was no diagnosis but a lot of things were ruled out.  In April my Oncologist discontinued Keytruda treatment and disenrolled me from the trial because of the lingering side effects.  The oddest thing about this recovery process is that in early April while I was still on high dose Prednisone, I began losing weight at the rate of 3 lbs per week even though I was (and continue) to eat like a horse.  I continue to lose weight today.  I have now tapered the Pred down to 2.5mcg per day and expect to be off of it entirely by Monday.  A little concerned that my appetite will go away along with the Prednisone.

My oncologist believes that the Immunotherapy triggered an auto-immune disease that he calls Mixed connective tissue disease which, although real, I believe to be a catch all diagnosis that does not really get to the root cause.  The fact is that my symptoms do not fit well in any auto-immune disorder definition.  Will see a Rheumatologist in the next two weeks to hopefully get to the bottom of this.

I provide the above as a cautionary tale for those beginning or currently being treated.  These drugs can cause very severe side effects that will significantly impact your life so do not believe for a second that since you have made it most of the way through treatment without issues, that you are in the clear.  The immune system does not like to be tampered with but these drugs do just that.

Cancer:  April PET scan showed no malignent tumors but several lesions/anomolies in lIver, lungs, and pancreas that are being watched.  My singular hope is that the drug actually did what it was designed to do and that future scans continue to show no tumors.  

Wish everyone here the best.


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John T's picture
Replies 5
Last reply 5/20/2018 - 11:08pm
Replies by: Susanlee528, TexMelanomex, Julie in SoCal, KellyH, Anonymous

Hi All...

Quite understandably most posts in here are about reoccurrances,new issues,diagnoses etc. People fortunate enough to have avoided all these (due to positive outcomes of treatment), tend to not report back, as nothing to report...skewing the stats!

I would just like to remind everyone there is hope and are positive stories.

I got the old "80% chance of you not being around in 5 years" story.. (Stage 3b lymph node)...but 10 years later still hanging around, no reoccurrances,no drama.. (Had only surgery at the time,no other treatment).

Not trying to claim or prove anything (and hopefully not tempting fate!)..just sharing a positive story and hope to anyone who might benefit from either..

Happy to answer any questions.

Stay strong

John in Bangkok.

Live strong (Borrowed from my man Lance Armstong!)

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Oldwife's picture
Replies 8
Last reply 6/15/2018 - 9:14am

In my family, i do all the research, learn the terminology, meds, treatments etc. etc. DH is alternately depressed, manic, happy, sad, scared, resistant, works like crazy, crashes, reads a lot to deny, wants to talk, doesn't want to talk, and so it goes. He's sometimes fragile and scared of dying, and I'm supposed to be helpful, kind, supportive, understanding, fill the holes, cook whatever the latest foods/diet he's trying, let family know what is happening, help with all projects but not trespass on his control of them. I'm trying, and submitting myself to this journey with all the positivity and prayer i can. We just found out his dear doggy has cancer, and it can't be cured. Dog is the wonderful happiness coach here, and it has been a blow for both of us.

But, I do feel alone in many ways. No one wants to hear distressing 'details'. My heart goes out to all of you, whether you have melanoma or are the family member of someone who does. We are all alone more than anyone can guess. Thank you for listening.

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Scooby123's picture
Replies 5
Last reply 5/18/2018 - 2:27pm

Anyone who as had anemia when on keydruda. What did they have to treat it and did they continue treatment .

Scooby ❤️

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