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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rpruck's picture
Replies 2
Last reply 4/10/2017 - 9:43am
Replies by: Gene_S, Scooby123

Hi everyone...I have had 2 yervoy treatments . After the first one there were no issues at all. Second time I have had diarrhea ongoing for 4 weeks now. Doctor has me on prednisone and while is has reduced some it it is still quite frequent. Tested weekly and monirtoring but hoping to see if others have had this and found success eventually. Mext treatment is on hold until we recitfy the issue.

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Nick19's picture
Replies 9
Last reply 4/11/2017 - 12:46pm

Hi all. I am new here, and back in January I had a shave biopsy on suspicious mole on my back. 

Two weeks later I got results, melanoma in situ. No depth, thickness etc given in biopsy report. 

I had WLE with clear margins  

 Final Pathologic Diagnosis


My question. I have read few times that shave biopsy are not good if it is about melanoma. 

How does it apply to me?  What should I think? 

I have already spoken with two doctors in the hospital, dermatologist and melanoma specialists and they assure me it was in situ and shave biopsy was properly done with proper depth with adequate staging.

What are your thoughts guys?

Thank you.  Nick

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Polymath's picture
Replies 10
Last reply 4/13/2017 - 9:04am

Greeting warriors,

I have not posted in quite a while.  Recent losses and ongoing battles have made me feel like an outsider, because I have been doing so well lately.  Perhaps it's survivor guilt.  I dropped all immunotherapy back in late November as it appeared I was progressing again after a year on ipi/nivo combo therapy.  Had the major surgery in mid-December to remove spleen which had blown up triple normal size, infested with two very large masses combined to about the size of a cantaloupe.  The surgeon also removed two other tumors in the vicinity while I was on the table.  Now, after fully recovering from surgery and being off all drug therapy, I must say I am feeling great which makes me uncomfortable when I read how others continue to suffer.  Sure, I have been through the war already, but entering the 5th year of the battle, when statistics had predicted I would like be dead by now just feels weird.  But of course my family is happy. So I hope that this can somehow continue to give hope to those still suffering.  For the record, radiation and surgery have been the primary ways I have controlled the disease.  I have been a non or only partial responder to just about everything we have thrown at the beast.  I know my battle is not over.  Recent scans show that I have some new growths, but it seems as compared to the aggressive nature of my past tumors which have mostly always been very large, it's in slow-motion now.  Perhaps the immunotherapies are providing some longer-term benefits?  I laughed at the results and said to onc that until we are measuring in inches, I'm not too concerned.  So in closing, please know I am cheerleading for the success stories, and praying and projecting positive energies to those in the thick of battle, whether I post or not.  This board saved my life, and I am thankful to each and every member here for the knowledge, insight, and emotional support they provide.  With Aloha.


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Replies by: Bubbles

Has anyone heard or seen info regarding whether excising a potentially melanomic lesion is beneficial? I'm already stage IV and suspect that my primary was a lesion I had removed 10+ years ago. I understand that skin lesions can change the immune system in a pro-melanomic way early on in melanoma development. 

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MichelleRHG's picture
Replies 6
Last reply 4/8/2017 - 5:39pm
Replies by: MichelleRHG, BrianP, Anonymous, jennunicorn

After 2 recent surgeries to remove cancerous lymph nodes I started ipi as adjuvant tx. After 2 infusions I started feeling anxious and asked for a PET scan, which showed 3 new spots in exact area of last bad node that was 45mm and with extracapsular extension when it was removed in January. All 3 spots have SUV between 4 and 5.
Local onc called my MDAnderson onc who recommended continuing on ipi and rescan in 4-6 weeks. It's about 3 months post op so she thinks it could be reactive from surgery.
If you look at my profile you'll see this was a very fast growing tumor. After a good discussion with local onc he agreed to go with the ipi/nivo and start next week . (I assume insurance will pay since I have 3 new spots in exact location of my "ruptured" node)
My local guy is NOT a melanoma specialist but is willing to be as aggressive as I want.
Is it bad to go against my MDA onc? Sitting around waiting for it to grow while getting a treatment of ipi which has much lower success rate is not my cup of tea .
Would love input from you guys!!

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snow white's picture
Replies 14
Last reply 4/14/2017 - 4:43pm

So Dad has been EXTREMELY mad at the world, worse than ever, on top of that not sleeping.  I texted the Doc and she had him come in.  Dad was on 80 mg of Prednisone and the Doc said that was likely the problem.  He was on the steroid because his liver numbers were up to high.  She has decided to taper him from the Prednisone and start him on Cellcept, she feels it will work much better for him.  Currently trying to get insurance approval, if not it is about going with $400+ out of pocket per month.  He is currently down to 20 mg and doing so much better!!!  Thank goodness!!!!  The plan is to start him on Pembro (Keytruda) on the 17th of April.  He will get new scans on the same day.  I think its a good plan.

Any thoughts?

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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rabbits68's picture
Replies 7
Last reply 4/10/2017 - 3:13pm

Yesterday was my screening at NIH for TIL trial.  I was impressed with the campus and staff, but I didn't qualify for the trial.  My blood work did not meet the requirements, mainly my white/ tcells and liver counts.  They didn't feel like my cells would grow or be viable for the treatment.  I was disappointed, but glad I went.  I guess we will next go to Sloan Kettering for other options. My physician is considering some type of combo therapy like ipi/nivo but wants a melanoma specialists to see me.  Still hoping and trusting there is something out there for me.  God's Got This!


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Sbdeutsch's picture
Replies 20
Last reply 4/14/2017 - 4:57pm

Last night Juan Victoria passed away. The Ipi just couldn't start doing its job fast enough and the disease burden was too much, his lungs couldnt keep doing their job. Its been a long hard battle. This board and the people on it have been a life line to us as we have gone through the few ups and mostly downs of this horrible disease. Thank-you all. Also Dr Jason Luke as his primary oconlogist was there every step of the way. 


I wish all of you luck as you fight this horrible disease and look forward to the day when a cute is found. 


Stacey, love and wife of Juan Victoria

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Jubes's picture
Replies 25
Last reply 4/14/2017 - 5:01pm

Hi all

after my lung resection in November (lower lobe) I had a pet in January that was clear. My oncologist has organized 3 monthly pets for this year and if I make it clear to 2018 we will move to 6 monthly. Well the good news is that this weeks pet was clear so 5 months after the op I'm still NED. However severe joint inflammation still evident on the pet. I have been on sulfazalasine for a few weeks and waiting for it to kick in and managing to keep working so I am over the moon happy. Hoping for positive results for all of you wonderful supportive people who I rely on so much for help and information


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Anonymous's picture
Replies 4
Last reply 4/14/2017 - 5:17pm
Replies by: debwray, marta010, tschmith, Anonymous

I've been referred to a palliative specialist despite having a fairly low disease burden. I have pain in one area where I had surgery, but otherwise have had very few problems with treatment. Is this a common occurrence? How many people have had this happen to them?

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miaka618's picture
Replies 4
Last reply 4/6/2017 - 10:23pm
Replies by: maryb-z, MikeW, miaka618, DaveNB

My Oncologist informed me that he is moving on in June so I need to find me a new doctor. Does anyone know of a good Melanoma specialist in the SE WI area? I found a couple doctors through a search, but unfortunately my insurance does not cover them. My current oncologist is in Madison, but their billing department has been a nightmare. I would really like to find a good doctor within the Aurora system. I haven't had any issues via insurance with them.  I don't think my insurance will cover any doctors out of state.

Thank you for any help you guys can give.


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Support our teams at our 14th annual Safe from the Sun event, the largest global melanoma event!
Each team has a special story to share. They come to celebrate their loved one's lives on this special day and feel the camaraderie of other friends and families who have struggled with melanoma.  Together, we have resilience!

To donate to a team or send a message of support, you can see their stories by clicking on the SFTS logo on the right or by clicking HERE.

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TexMelanomex's picture
Replies 21
Last reply 4/11/2017 - 12:23am

I just got to view my path results on my MD Anderson account...not sure why they do this without calling first BUT not to detract from the results...

Finally some good news! All 4 lymph nodes were clear and all surgical margins clear! Its weird I should be celebrating right now but not quite ready to let me guard down too much. I was prepared for battle and Im not sure if the battle is coming any time soon...does that sound crazy?

In any event, I'm glad I can share some good news on here tonight. I will post more after talking with Dr. Ross tomorrow. For tonight, Stage II is as far as it goes!




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Christine.P's picture
Replies 5
Last reply 4/6/2017 - 1:11pm
Replies by: Bubbles, Christine.P, UBContributor, Anonymous

It seems I've been asking a lot of questions lately and I'm so glad you all are here to lean on. 

I just found out that my cancer has spread (primary tumor was lower right calf (2015) and I just recently had a new tumor removed from just above that area). The report said there are multiple new cutaneous and subcutaneous lesions in my calf, thigh, hip, and lower right back. Intense uptake also reported. 

My question is this. If the lesions were in an internal organ, would the report state that? I'm wondering specifically about the lesions in my lower back. Does the PET scan specifically identify if the lesion is in an organ or are there more tests that need to be done for that? 

I don't know what is next. I completed 3 rounds of ipi/nivo and have been on just nivo for about 9 months since the combo. Are there other drugs to try now or will I need to find a clinical trial? 

Thanks for your support. I am scared.

Christine P. 

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Anonymous's picture
Replies 5
Last reply 4/2/2017 - 11:09pm
Replies by: jahendry12, LHiner50, Nick C, MikeW, Anonymous

I am wondering if others have nausea, decrease ability to do exercise and shortness of breath??


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