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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Richard_K's picture
Replies 4
Last reply 3/4/2018 - 11:51pm

I thought I would check in with a post about how I am doing. It’s been 8 ½ years since my stage IV diagnosis and 8 years today that I started (and continue) taking vemurafenib.  Having all of the common side effects I only continue with two – mild skin rash and photosensitivity.

I was in the phase 2 clinical trial and then transitioned into a phase 4 rollover study that I still participate in.

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foothillfella's picture
Replies 6
Last reply 3/4/2018 - 10:59am

I'm in the midst of taking Mekinist and Tafinlar, for two weeks, in preparation of Opdivo/Yervoy immunotherapy. The side effects of the pills have been primarily fatigue, fever, extreme chills and shivering, aching joints and muscles, especially hips and lower back, difficulty sleeping. About 5:15 Wed. morning, I was on my knees, with dry heaves.

I'm trepidatious about the potential side efffects of the Opdivo/Yervoy treatment. Most seem to be diarrhea and fatigue, but many others alre all over the place. What is the experience of this group?

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daughter1's picture
Replies 11
Last reply 3/4/2018 - 2:51am

Hi Everyone.  My mom has mestatic melonoma in her liver and spleen.  MSK started her on Yervoy/Opdivo combo but after two doses, she was taken off due to her creatinine levels (forgive me if my spelling is incorrect.)   She then continued every two weeks with just the Opdivo and her scans are showing gradual decrease.  We are so happy that there are no new tumors and the ones that she has are slowly but surely shrinking.   Question:  My mother is complaining of horrible joint pain from her back down to her knees.  She has a difficult time getting up and literally had to stop and take a few breaks while walking to the car from the food store.   Have any of you experienced this?   The doctor seemed to be so happy with the scan results because she is responding so well.   I'm a nervous wreck and I feel badly that she is in pain. 



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Bubbles's picture
Replies 7
Last reply 3/4/2018 - 2:39am

Since many of you recently posed questions and noted your experiences with joint pain and arthralgias while on immunotherapy, I thought it might be helpful to offer information to all of you in one place.  First of all, so very sorry for what you are going through!!!!  Secondly, sadly - joint pain is a very common side effect to immunotherapy.  Like most side effects from these treatments, arthralgias can range from a bit of discomfort to completely debilitating pain.  Most of us on immmunotherapy have dealt with them to some degree.  "Jubes" on this forum certainly endured more than her fair share!  You can use the search bubble above to find her posts and information she shared/attained.

Here are some other related threads from this forum:  

Once again....while folks spamming this site with the promise of pass ports and other goodies can post with impunity...if I share more than two links in one post...even ones from this very forum....I trigger the spam blocker!!!  

More below....

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Anonymous's picture
Replies 4
Last reply 3/4/2018 - 2:31am

Good Morning,

Has anyone experienced incessant back pain as a side effect of Opdivo?  I had back pain prior to my diagnosis but after undergoging Opdivio for over a year now it has greatly increased.  It is difficult to know how much of this is attributed to the drugs vs just normal wear and tear.  I am under 40 and before this have never dealt with back issues.  I have had the joint pain in my knees, wrists and feet but they all ebb and flow.

There has never been any sign of disease in my back so they have ruled out the Melanoma causing any issues.  It has gotten to the point where pain pills barely take the edge off of the pain and I am searching for any answers or understanding of what is happening.  Anyone have similar stories/experiences - if so what did you do to manage it?

Thank you!

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Anonymous's picture
Replies 6
Last reply 3/3/2018 - 9:38pm

Hi! I was diagnosed with stage3 melanoma in late 2016. Had lymphnode biopsy then had the rest removed. Started Interferon Alpha2b in February 2017 and finished in 2018. Ive tried so many forums online to find out about life and effects after you finish but came up with nothing. If anyone who finished treatment could help I'd be immensely greatful.

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Sharon93065's picture
Replies 4
Last reply 3/3/2018 - 9:24pm

Hi, after my 3rd Petscan two new nodes glowed in my 'gut.' That was Dec 6th. This new Petscan showed one is gone and the other reduced. 1st of January I was put on every other week treatments of 1mg Opdivo. It is working and Dr will keep me on it.  Blood panel is good.  Liver behaving itself.

The not so good news, i had a brain mri June '17 it was clear. My new mri done last week shows two very small spots, as Dr said, quote " I won't sugar coat it,"  so new mri ordered in 3 more weeks to compare it with.  So I lost sleep last  night.  I have read that many of you have had the cancer spread to the brain and are doing ok.  Your postings give me hope. 

A little history, onlty was able to have 3 of the Opdivo/Yervoy combos.  Ending Aug '17. Prednisone until Dec'17.  New treatments Jan '18.  

Also the Petscan showed all the original 6 tumors still gone, and the ground glass in the lung that used to be a mass can  no longer be seen.  Thank you Lord!!

Now worried about the brain.  

Thank you all Bubbles, Jennifer, Ed and others that reply and help me feel like part of your community. We will fight this Beast!!

Sharon from Simi Valley, Ca 

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Jetskidog22's picture
Replies 2
Last reply 3/3/2018 - 4:51pm
Replies by: Jetskidog22, brianm

I have had 2 rounds of immunotherapy and I have had very bad gas is this normal with this treatment.

I am taking IPPI and Odivo  as my treatment... 

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Toby0987's picture
Replies 4
Last reply 3/3/2018 - 4:04pm

Well had my 5 year appt since being stage 3b in 2013. After a tense day of waiting for PET (had to get poked 5 times for them to get a vein) and blood test results-Dr  Markovic came in and gave me my 5 year coin and congratulated me for being 5 years NED and no more need for appointments. It was awesome-brought me to tears-had my 6 year old with me and when I came out of the appt room the staff was lined up and gave me a standing ovation as I walked out. My daughter was so excited -she thought it was because of my birthday. Thanks to all of you on this forum. I valued all of the information you provided-it was great to have a crew to bounce ideas off of. I truly believe that having this community was just as important as having a great melanoma medical team. Thanks again-I will check in from time to time. It is good to have some winning on here!

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JuTMSY4's picture
Replies 14
Last reply 3/3/2018 - 3:48pm

After what's been a great almost 2 years NED/NEAD, last week, my scan revealed a small metastatic tumor on my adrenal gland.  An MRI seemed to confirm that earlier this week.  I was wondering if anyone (probably Bubbles to start) has any information on acquired resistance.  Here's my short history:

December 2014 - Dxed Stage 4 - tumors in bones, possibly liver (reclassified as fatty sparing), distant lymph nodes.  

January- April 2015 - Ipi.  Eliminated bone pain.

April 2015 - Began Keytruda treatment

December 2015 - NEAD (spots on liver still on CT, but eventually reclassified to fatty sparing).  

October 2016- Stopped Keytruda

October 2017 - clear scan

February 2018 - PET showed sub 2 cm spot on right adrenal gland.  

So, there's a lot of factors there which make me an interesting case again.  I know adrenal tumors don't tend to cause any problems initially, but I do feel pretty good.  I had very limited adverse reactions to ipi and keytruda.  I'm also waiting for a call from my doc to discuss the next steps (in concrete terms), but that our previous discussion was surgery and restarting treatment.  Does anyone else have any other information or experiences to draw from?

Thanks again.  This place is always an amazing resource.  

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CancerSpouse's picture
Replies 12
Last reply 3/3/2018 - 1:08pm

Hey Cancer Warriors:

Happy to share some good news from John's latest scan results: The remaining tumor on his left adrenal gland has continued to shrink. It's down 10 mm (to 27 x 20 mm) since he started on Keytruda last October.

The left deltoid tumor that had been directly injected with SD-101 as part of a clinical trial remains MIA (missing and inactive) following his last injection in January. The original, canary-in-the-coal-mine tumor removed from the back of his head has also not reappeared. And there are no new lesions. 

Hoping the trend continues!

Side effects have diminished since going off the trial drug. Even the oral ulcers are less severe. Rash flares up that are tolerable. Now we can just focus on regaining his lost weight, about 10 pounds. (So far, I've gained most of it myself.)

Thank you to EVERYONE for your support and advice. You are stellar folks, and I've found this group invaluable.

Fight on!



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karmendowell's picture
Replies 4
Last reply 3/2/2018 - 6:51pm


I’be been reading these posts for last three days. I’m so confused and sometimes I’m hopeful but then I read some  more and then I feel hopeless.  My main thought and worry right now is this.....I see so many say “it was caught early-Stage 1a,, no Mets, 0 miotic, clear margins on the WLE, clear SLB results and then 3 months later they find an enlarged lymph node and it’s met to the lungs etc... how can you relax and accept that you will probably not have another MM and keep with with your 3 month scans and it will be fine.  When obviously that isn’t always true. What else could have been done in these cases? Are the biopsy’s  read wrong to begin with? If so, why would the SLB be clear. I know there are no answers and that MM follows no rules. Should I accept that I will die from this ultimately ?  How can you live in fear? 

I felt better yesterday after leaving the derm-she was so nonchalant and told me I’m ok but today I’m scared and worried all over agin.  I’m rambling now. I know the answer here but why do they act so damn sure that you are cured? 


Thanks for reading this far. 



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REBECCAW's picture
Replies 1
Last reply 3/2/2018 - 4:19pm
Replies by: sister of patient

I finally went to the GP as I have loads of moles and I have always known a few don't look the same as the rest (different colours and asymetrical). My GP referred under the 2week rule and I was seen by a dermatologist within a week. Two consultants agreed that the moles looked different to the rest and that they should come out. I was told they like to do it quite quickly. I mentioned that I had a trip booked in 10 days time for 2.5 weeks and they said they would try to work around it. I didn't hear back so I phoned and was told I had an appointment for the biopsy whilst I was due to be away. They then offered me an earlier appointment but this was the day before I was due to fly. I queried about the recovery period and they said they would speak to the surgeon and ring back. The next day I got told that they couldn't do it before my trip as I then wouldn't be able to travel so they would book me in for when I get home. The earliest appointment they have is after Easter. I am going crazy thinking of an almost 5 week wait just for the biopsy. I'm considering cancelling my trip, although they didn't seem to advise me to do so. I'm very confused as to what to do next. The consultant didn't say much in the appointment, Just that they looked very different and both recommended not taking a wait and see approach and just to remove them. The wait is driving me crazy. I feel even if I cancel my trip I might not get an appointment sooner.

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Anonymous's picture
Replies 6
Last reply 3/2/2018 - 2:29pm
Replies by: DZnDef, Anonymous, CancerSpouse, jrtufo, marta010, Tracyyy

Hi Everyone,

I found this site months ago during a time where it seemed like my dad was at his worst and we weren't really sure how much time we had left. He has made many comebacks since then, but it seems like for every small victory he has, he gains three more setbacks. I have found myself coming back to this site and searching through forums anytime a new punch to the gut comes our way and I have finally decided to actually make post of my own.

Since my dad's diagnosis, my stepmom has been the one that's pretty handled everything. My dad has never been one to talk about his emotions or any serious matters really so my brother and I have been really dependent on our stepmom to relay all information to us. Communication hasn't always been the easiest in our family, especially for my brother and I when it comes to our dad but as of lately I've been feeling this responsibility that, as the oldest of his two kids and the one who lives closest, that I should be more involvded. Maybe I've just been takng advantage of the fact my stepmom has been taking care of things because I was trying to avoid facing reality but I've noticed more and more the emotonal toll it's taking on her and I'm not sure it's really helping with her attitude when it comes to trying to stay optimistic for my dad. I've also noticed that my dad responds much differently with me and my encouragement than he does with her.

A little background on his history (it's not as in depth as some of the explainations I've seen here, but like I've said, I'm just starting to get a better understanding of his diagnosis, so please bare with me!):

- Spring 2013 he was diagnosed with stage 2b when they found it on his back. At the time interferon was the treatment option available but my dad and stepmom chose not to go that route and instead had the lymph nodes removed? After that procedure,  he was cancer free untl 2016.

- Jan. 2016 he was preparing to have a knee replacement, however, the ct scan that was done pre-op for the knee replacement, actually detected that the melanoma had came back but this time in his lungs, making him stage IV. He decided to go the immunotherapy route and began taking Keytruda.

- Fall 2016 melanoma was found on his forearm and he had mohs surgery to have it removed.

- Early 2017 they were told that the keytruda was no longer working and he tried Opdivo but that made him very sick so he stopped taking that after one treatment.

- March 2017 he met with a melanoma specialist and got approved for a clinical trial (i believe the trial was Opdivo+Yervoy and Keytruda??). He did one treatment but the side effects were too much and actually sent him ICU for about a week during the summer. the trial did have some what of an impact as parts of the cancer had actually shrank but the after math made my dad very weak and he wasn't able to continue with the trial.

- About two weeks ago he had a bump on the back of his head that came back positive for melanoma and now he is wanting to have the mohs surgery again.

My dad hasn't been on any treatment since July 2017. When I've asked my stepmom about it, she has said that he is too weak to go on another trial but I feel like there's got to be something he can do? He has definitely lost a lot of weight and his strength is no where close to where it used to be, but i feel like the ICU experience may have scared him?

On top of everything, for about the past 6 months or so my dad has been dealing with sciatic nerve pain in his back which I feel like has been a major blow to his quality of life. He's stubborn and hates the idea of using a walker or cane for assistance and as of late, his days consist of him just sittng around watching tv. He just got a second epidural done to help relieve his pain so I am hoping this will get him up and moving again.


I apologize for rambling, this is the first time I have really shared any of this with people other than close family members and friends and sharing this in a place where I know there are others who can relate has made me feel more at peace.

He just had a ct scan done as part of his 3-month check up and they get the results back on tuesday. My stepmom invited me to go if I wanted to. Should I just be there in support or are there questions I should be asking??

I'm not sure what I'm looking for here, I think I just wanted to see if there was anyone out there that could give me some kind of advice or pep talk of what all I should be doing as his daughter to make sure he stays as encouraged and supported as possible. It makes me so sad seeing him depressed at times, but like I said earlier, I really feel like he responds to me in a different manner than he does with my stepmom and if there is anything I can do to help encourage him to stay motivated to keep fighting, I'm all ears!!

thank you to those who took time to read through my lengthy, first post :) and thank you to those who share your stories - they have provided me with so much information and perspective; It's very much appreciated.

- Laura

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Anonymous's picture
Replies 2
Last reply 3/2/2018 - 10:21am
Replies by: Anonymous, Janner

 Hi Janner,

I would like to hear your advice here. I got mole removed back in 2015 and  pathology report wasn`t excluding early melanoma arising from mole.

I am still being watched by dermatooncologists and go for check ups, however I would like to hear your opinion on my path report and how it should be interpreted. Please see my traslation below, as the report is not in english.

"Micro: Combined dysplastic pigmented nevus with nests of prolifiration of pagetoid cells. Recommended immune staining to exclude intraepidermal superficial spreading melanoma. Recommended stains are Tyrosinasa, HMB-45 , Ki-67.

Immune staining:
Tyrosinase, HMB-45 - bright positive cytoplasmic reaction in the intraepithelial component of proliferating cells with their extension up to the horny layer. In the structure of the intradermal nevus is negative reaction.
Ki-67 - positive nuclear(?) reaction in cells of basal layer in epithelium of epidermis.

Conclusion:morphologic features and immunefenotype are matching melanoma arising in a dysplastic nevus"

I had re-excision and it was all clear.

So i have a few questions if you can help me please?

1)This report says just melanoma arising with nevus, but according to immune staining it is in epithelium so looks like in situ, no? why it doesn`t state this then?

2) I believe i don`t have Clark and breslow because first pathologist that did micro considered this a dysplastic nevus with proliferating cell, correct?

3) I am checked up by dermatologist and every time i leave them with a paper it doesn`t say my concrete diagnosis(like in situ), it just has code for skin cancer and in the original diagnosis field they put the whole pathology. Does it mean they don`t consider it full in situ yet?

4) it has been already a few years, but do you think i should re-check the slides with another pathologist? Or this report is stating all needed things?

Thanks a lot!

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