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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landlover's picture
Replies 4
Last reply 5/24/2017 - 6:00am

I have stage 4, mets to lungs.  Started Ipi/Nivo in December but only had one dose before my thyroid gland was inflammed and destroyed.  My team decided that I should go to just Nivo after that, but now after 5 nivo treatments I have colitis (lymphocytic colitis diagnosed by biopsies during a sigmoidoscopy).  They tried budesonide (steroid that is taken orally but only affects the gut- not absorded systemically) with me but it seemed to actually make symptoms worse (diarrhea, stomach upset).  I have been on treatment pause for 6 weeks.

I have had great response with my lung mets nearly completely gone already.  My doctor now thinks that I should just stop treatment and continue with surveillance - scans every 3 months with brain MRI annually.  

I would love to be done but I am nervous about stopping.  What are some experiences others have had - do your docs stop treatment when it seems the cancer is responding and the side effects are outweighing the benefit, or do they still treat and give more aggressive steroids?

Thanks for input!



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Anonymous's picture
Replies 7
Last reply 5/24/2017 - 12:57am


I found out on Thursday that 1 of my 3 moles biopsied came back as Melanoma In Situ. The other 2 came back as severly dysplastic and normal. I am still in shock and very scared, as I am married and have 4 young children. I am going in on Tuesday for a wide excision of the 2 that need it (and hopefully talking them into excising another large mole I am concerned about). 

I am wondering if there are any other mothers who are going through a melanoma journey? I feel like I am a ticking timebomb and am having a hard time not crying in front of the kids. I do not know anyone personally who is going through this, and it would be so comforting to hear from others in similar situations. 

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Anonymous's picture
Replies 8
Last reply 5/23/2017 - 9:24am
Replies by: AliCat61, raun cesar, SABKLYN, Anonymous

Stage 4 patient here. Each of my 3 radiology reports at current treatment center have described "nonspecific bilateral punctate nodules" in the lungs on CT, but these are not measured like the nodules in other organs. They are "stable" in the latter 2 reports. Has anyone had similar nodules? Did they resolve along with other tumors? What is the likelihood that these are tumors at all? Is there any way to figure out if they are cancerous?

What is the significance of the adjective "punctate"?

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VIve's picture
Replies 5
Last reply 5/23/2017 - 9:59am
Replies by: Patrisa, VIve, messedmelanocytes, Anonymous

Probably everybody in my situation is wondering how did I get there. Metastatic melanoma cancer stage IV..Last year I barely had a flue and now I'm diagnosed with a termal illness where apparently is not much possible to do to save my life.

I had some small moles removed more than a year and a half ago but no problems afterwards. That's why I'm asking myself what could be the reason for the cancer to appear or develop at the beginning of this year? Last autumn I had a flue vaccination afterwards I felt somewhat sick. Before getting really ill I was going a little too much for me to the gym and therefor was taking lots of aspirin. But really otherwise nothing serious. Also other questions are bothering me like why aren't there preventive blood checks? And how is it possible from totally healthy (just with anemia) to be told one day when you don't feel well that there is nothing else to do before foing anything at all?! 

I thought the medicine is already advanced after decades of trials, money raised for research etc. And if there is an immunotherapy that is working why it has to cost 100 000 $ or anything like this - it should be affordable for everyone in the world...

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baesill's picture
Replies 4
Last reply 5/23/2017 - 11:40am

1) Did you get tested for ldh levels before treatment? I consulted with some oncologists who cared about testing ldh, and others who didn't. 

2) For the ipi+nivo treatment, did you get a 6 week scan? Again i know some oncologists who do and some who do not. 

Does anyone have any insights the reasoning? 

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Anonymous's picture
Replies 4
Last reply 5/22/2017 - 1:13am
Replies by: Anonymous, messedmelanocytes, Janner


I had melanoma last year and have had at least 10 severely atypical moles removed and lots of moderate and mild and some benign moles too.  I have tons of moles unfortunately.  

I am seeing a new doctor who has been removing moles that are moderately dysplastic that do not have clear margins.  They say not to worry about those but I can't help it as my previous medical center removed more skin for moderately dysplastic.  This new cancer center only removes more for severely dysplastic or melanoma.  

I am a young mother in my early 30's and don't want unnecessary stitches but want to make sure I am doing everything I should be doing.  

Thank you for your guidance.


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JaneD's picture
Replies 5
Last reply 6/16/2017 - 7:01am

Hey Everyone,

First, thanks to everyone who posts here.  It is so comforting to read everyone's experiences and has kept me sane for the first part of my treatment.  I had melanoma I guess 20 years ago.  Thats what the first pathologist siad.  After removing a large section of my leg the second pathologist said no it was spitz nevus.  The surgeon said sorry and I jumped for joy and never thought about it again.  20 years later my inguinal lymph node got big and hard fast.  Long story short I find out I have stage 4 melanoma with a few other smallish tumors throughout my body-crazy cause I felt normal.  Lucky to have started on ipi/nivo as soon as possible.  Combined with a special diet and a bunch of probiotics which are emerging as somehing that really helps the immunotherapy work better (I would be happy to share if anyone is interested). 

Just had my second infusion last week and ever since I have been struggling with a constant cycle of nausea, chills and fever that reaches 103F.  Tylenol gives me a few hours of relief but I am really struggling-messaged my doctor today-but it's saturday so I don't expect much until monday.  Just by reading these  message boards I know these flu like symptoms has happened with others too.  How long do I suffer through this and how do people feel when taking steriods?

I am feeling horrible but I am happy to feel this way beacuse I know my immune system is taking care of buisness. The lymph node in my leg was originally 2cm and it doubled in size and was super painful after the first infusion.  It then got much smaller and softer measureing under 2cm.  It has just gotten a little bigger and painful again as well as another lymph node in my neck.  At  first I was worried my cancer was growing like crazy but logically the growth and pain is more more likely immune cells getting into my tumor and killing the cancer cells.  When I get a fever I know my immune system just can't stop itself-the brakes are gone and the cancer cells are now a foreigner.  So I am keeping positive.


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SOLE's picture
Replies 1
Last reply 5/21/2017 - 7:53pm
Replies by: Ed Williams

Have any of you ever had, through blood or tissue, your melanoma tested against the available immunotherapies (or chemos) like in the RGCC tests or Maintrac for exmple?

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Anonymous's picture
Replies 0

Does anyone feel like waiting is sometimes the hardest part?  I had a CT scan last week and won't get results until Monday.  I'm also waiting for follow up MRI on the 31st.  This will be the first one post radiation for a brain met.  This is also the first CT since being on Nivolumab only from Ipi/Nivo combo.  I'm wondering if it is working or if I should be talking to them about looking at other treatment options.  Should I ask for a PET scan?  I've only had CT scan and I understand PET shows metabolic changes.  Thoughts?

One last thing.  The hair loss post radiation was a big blow.  I didn't expect it to bother me so much.  I'm feeling much better now that I've cut my hair (think old lady cut) and have an appointment to get a wig.  I'm hoping it grows back but again the waiting.  

Have a great day.

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               I need some advice as I have no experience with cancer...until now. My Dad had a lesion on his arm biopsied and the pathology report showed melanoma. Apparently it is not the primary lesion and they did another biospy of a lesion on his face and that came back with the same results. He had a PET scan and MRI of the brain this week and the surgeon said that the brain was clear but he has two spots on his lung, one of which they "are very concerned about." Which I assume is cancer.    

                  My question is about what to do next. The dermatologist sent him to this general surgeon in the Jacksonville, FL area who ordered all of the scans and is going to call on Monday to talk about doing a biopsy.  We also have an appointment at Moffitt Cancer Center in Tampa for June 5th and will meet with an oncologist and surgeon on the same day. I am wondering if we should wait and have everything done at Moffitt or have the surgeon do his thing here and then follow up at Moffitt. I feel like my dad should have it done at Moffitt since they are the best cancer center in FL, but I also feel like we have been waiting for all of these appointments and tests and the weeks keep ticking by... I just worry that the longer we wait the worse it will get (and it's already pretty bad).

                 So if anyone has any advice I would appreciate it. I feel lost trying to navigate through the process. Thank you.



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jennunicorn's picture
Replies 14
Last reply 5/21/2017 - 11:42pm

I need some advice about some allergy medications,,,

When I started this whole immunotherapy journey, I didn't have "seasonal allergies" or any kind of allergy. But right after my first infusion ever of Ipi.. in December 2015.. my nose was all runny and plugged up for a day. This happened after every infusion, and now a year and a half later and on Nivo, my newfound allergies have become difficult to control. I was taking Claritin every morning and that was helping a lot. I recently switched to Zyrtec because it seemed the Claritin stopped doing its job. But, I'm continuing to have at least 2 days a week of full on allergy attacks.. going through 2 boxes of tissue in a day!

So, if anyone else who has dealt with major "seasonal" allergies has any recommendations for OTC meds to try or if I should see an allergy specialist.. please let me know.. I'm getting reaaaaallllllyyyy tired of blowing my nose!

Thanks guys :)

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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J.bun's picture
Replies 1
Last reply 5/20/2017 - 8:31am
Replies by: UBContributor

It has now been 6 months since my advanced melanoma diagnosis, and definitely filled with some sharp rocks - but also a calm(er) current.

After a stint in the hospital where I could barely breathe or walk upon my release in January (allergic reaction to Zelboraf), earlier this month I took a Caribbean vacation with my DH and could keep up with all the activity. (Yes, I was covered in sunscreen, a floppy hat, and UPF clothes ....when I came back, multiple co-workers said in the horror "you don't even have a tan"). 

The last 6 months have been challenging - working through 3 drug combos - but I just had my 3rd scan and am thankful for the results:  my lymph nodes are all clear!  ...Yet, there are two small "areas of activity" on my spleen that have showed up... my doctor is not too concerned about them given what appears to be a complete response, but I cannot let out a total sigh of relief.  And it seems it is not too uncommon for nodules to come up that are indeed, 'nothing.'

Nonetheless, the plan had always been to get the max benefit from BRAF pills and then move to pembro/Ketytruda for maintenance and monitoring.  So, that is where I go next... and hope this activity in the spleen is nothing or that Keytruda will nail it. 

My thoughts and support are here for everyone.

- J.

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It seems to be typical that melanoma patients get regular PET scans every three months (then decreasing to 6 month intervals). I was just turned down by my insurance company for a scan 4 months after my resection surgery. Is this typical to get declined by insurance for a proactive regular scan?

Can anyone provide insight on how my Oncologist can get the scan approved by insurance?

(my insurance is good, Aetna Signature PPO, and has never turned anything down until now)

Thank you!


Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis), recurrence Sep 2017 (node by ear)

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MovingOn's picture
Replies 3
Last reply 5/23/2017 - 3:06am

I am facing the situation where my side effects from Ipi/Yervoy are being suppressed by prednisone. My side effects are hypophysitis and sinusitis. Will the prednisone return my immune system back to a pre-Ipi state or has my immune system been changed permanently? I hope that I benefit from the Ipi infusions but I also don't want my pituitary to swell again once the prednisone is tapered.

Can anyone share insights on the permanent immune system changes from Ipi? Or if prednisone will permanently direct my immune system back to not attacking my pituitary and sinuses?

(there may be other side effects I'm experiencing which have not been diagnosed, e.g. Mild Neuralgia. Hopefully these won't come back/progress when prednisone tapers.

Thank you!


Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis), recurrence Sep 2017 (node by ear)

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Bradley75's picture
Replies 10
Last reply 5/20/2017 - 10:24am

Just wanted to share some good news.  It has been a long time since I have been able to say that.  I had one dose of the combo back in January and the side effects wiped me out.  Once I was off steroids and beta blockers, they decided I was stable enough to try Pembro.  Monday the 15th was three weeks after my fourth dose.  I had my first scan and MRI since the December scan that moved me to stage 4.

The results indicate a 30% reduction in the size of the tumor on my spine, considerable improvement to the right lung, no new growth, and two other spots remain stable.  I am not 100% sure how to quantify the considerable improvement to the lung comment, but it sounds good to me.  All my blood came back within  the norms so I received my 5th dose of Pembro on Tuesday.

I wanted to share this as hope for those that can't handle the combo.  I was pretty doom and gloom when they told me I couldn't continue with it.  There is so many success stories with the combo that I thought what is the point of trying Pembro.  Keep fighting even when you feel there is nothing that can help.  I am by no means in the clear, but at least I can enjoy the next three months until my next scan.  I can spend the summer with my wife and kids knowing, at least for now, we are winning the battle.

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