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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Cinthia16's picture
Replies 4
Last reply 1/5/2016 - 12:59am
Replies by: Anonymous, AshleyS, Donnasue0611

Hi my name is cinthia 

I got diagnosed with melanoma 3 weeks 

Ago am 7 months pregnant, even tho the doctor said it was caugth on time im so scared that it has spread i dont want to leave my daugthers alone. The doctor told me i have to do check ups every 3 months for 2 years 

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WallyE's picture
Replies 10
Last reply 1/3/2016 - 1:12pm
Replies by: _Paul_, mjanssentx, WallyE, jennunicorn, Anonymous, Linny

Good morning all and a very happy new year to you all.

I have posted under various topics in the past but I now need new advice, which will get lost if posted on a previous topic.

I am due to commence with the subject treatnment within the next week or so. Just waiting for my Medical Aid to authorise it.

I have googled the treatment but it seems to be quite intimidating.

I would like to know if anyone who has had this treatment can spare a moment and tell me what they experienced and whether or not it is as bad as they say. As it is I am having quite a hard time adjusting to being without a stomach in terms of nausea etc so not sure if I can handel another load of the same discomfort.

Any input will be greatly appreciated.

Kind regards


One day at a time.

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Anonymous's picture
Replies 10
Last reply 1/28/2016 - 7:41am

Just wondering what to expect for my upcoming ipi/nivo treatments. I have heard some people respond without many side effects and some with quite a few. I was diagnosed 7 years ago with a melanoma mole on my right thigh, removed it surgically with very large margins. 5 years later a lump within the same region showed up. Again, surgery very similiar to the first. At the time interfuron was an option or observation. I decided to observe. 2 years later (now) I had a lump in front of my right ear biopsied and it tested positive for melanoma. A subsiquent PET was done and one other tumor was found in my abdomen under my liver on the messentary wall about the size of a softball. Wow have things changed. Anyone else have any similar situations? Just looking for some info as not much is to be had thus far.

FYI, I was originally supposed to start on a clinical trial a couple weeks ago in Portland Oregon. It was a combonation of Ipi and IL2. Just prior the insurance company denied the treatment and said they do not support clinical trials. It sounded like quite the 1-2 punch but I hope the ipi/nivo takes hold.

Thanks so much for listening. Scott.


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fleurdelis82's picture
Replies 2
Last reply 12/31/2015 - 4:51pm
Replies by: fleurdelis82, Janner

I recently had three moles biopsied, and the dermatologist called to let me know that everything is benign and no further treatment is necessary. However, the biopsy report got me worried. Please help me understand: 1. What it means; and 2. If there is any danger in case the moles come back. I am especially concerned about mole A as it already seems to be darkening in the biopsy site. Also, even though it says clear margins, it seems like a tiny spec of brown pigment have been left behind. I would like to know, in case moles A and B recur, if they need to be re-excised, or if anything else may be necessary.

A. Skin, right navel: junctional melanocytic nevus with moderate dysplasia and melanopgahes. The margins are clear in the planes of section examined. Note: stain for melanin A is positive.
B. Skin, right lower abdomen: junctional melanocytic nevus with moderate dysplasia. The margins are clear in the planes of section examined.
C. Skin, right thigh: solar lentigo.

Also, moles A and B looked very similar and were located in the same area on my stomach. I have two smaller moles that look very similar to those. So I am assuming those smaller moles may also be atypical? Do I need to have them excised as well? Will it reduce my melanoma risk?

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Anonymous's picture
Replies 4
Last reply 1/1/2016 - 12:10am
Replies by: Anonymous, jennunicorn, kathycmc, mkirkland

I was diagnosed with Stage 3 nodular melanoma in April 2015. I had first sugery in May of 2015 and second surgery to remove all lymoh nodes in July 2015. My oncologist told me that even if I do the treatments, I still have a 60% chance of it coming back, so I chose to do nothing. Here is it December 2015 and I now have in-transit metatasess around the original tumor site. I go back to oncologist on January 7 to discuss treatments. I am sure that she will offer me the same treatments as before which are either Interferon, Peg Interferon, or Biochemo. I have read so many things about all of them and I have NO IDEA what I should do. Can anyone tell me if they have had to make this decision and what decision you made? How it went for you and if it helped at all. I'm to the point I just want to ask her to take my whole darned leg instead of having to do these treatments. Any help would be great. 

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Anonymous's picture
Replies 5
Last reply 1/2/2016 - 2:32pm
Replies by: mrsaxde, Eileensulliv, Jubes, Bubbles, Anonymous

I find that adding these posts are good for hope and to help others learn about the potential responses, timing, rates and so forth.

Here's my stats:  Dx stage 2 on 6/3/14 (mel on toe).  Dx Stage 3 on/about July of 2014 (SLNB - surgery to remove part of toe).  Did not do interferon - close follow up/scans every 3 months.

Dx stage 4 on 12/23/14 (severe discomfort in back, chest and shoulder).  Scan revealed mets throughout chest bone structure including breast plate, ribs, back and spots on left leg.  Mets on liver.  


Xgeva:  Jan to present

Ipi:  Jan-April 2015.  Limited response, but growth of mets - Significantly reduced pain related to bone mets. 

Keytruda:  April - Present.  

Scan in July 2015:  Stopped growth.  Significant sclreosis of bones and potential new bone growth.  No pain.  Still some uptake of tracer in bones.  Liver mets appeared slightly larger but difficult to tell.

Scan in October 2015:  Still not significant growth.  Major sclerosis and photopenia in bones - could be reaction of Keytruda/Xgeva killing mets and building bones back up.  Stil some tracer uptake w/ bones. Suggestive of partial response.  Liver mets appeared slightly larger but could be inflamed. 

At this point, Doc insisted on continued treatment.  

Scan in December 2015:  Same results for bones, but no more uptake.  All tracer uptake at normal levels.  No uptake on liver - no mets noted.  Suggests complete response to therapy.  NED.

As of right now, I'm NED and my wife and I are thrilled.  We went through a long process to get here and were very fearful as each scan passed w/o reduction to the liver mets that we would never get here.  Liver mets are noted to be difficult to eliminate and most keytruda responders seem to come quickly.  But, we proved to be quite different.  

It's a good way to start 2016.  

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bonusfries's picture
Replies 4
Last reply 12/31/2015 - 5:29pm

I had progressed while on BRAF + MEK (2cm adrenal mets), and since the new growth was limited and small, we did the 4 infusion cycle of ipi starting in the beginning of August.

An interview I had read from Celeste's blog said most people who progress on BRAF don't respond to ipi, so I did not have high hopes for this treatment.

My last infusion was on October 9th. While my side effects were rather impactful, my blood work and overall health were good throughout so we waited as long as possible for follow-up scans.

My follow-up CT shows no traces of the mets, nor did it find anything new! The side effects were well worth that radiology report.

Clean scans for all in 2016!


Just do it

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Anonymous's picture
Replies 4
Last reply 12/31/2015 - 7:15pm
Replies by: Bubbles, LASS

My husband was diagnosed with melanoma in 2010. His melanoma was found in a cyst on his head. He had surgery, a skin graft, sentinal node was negative. He had a satelitte met off from the primary. He did a year of interferon and had radiation on his scalp. He was NED for five years. In September of this year, 2015, they found multiple mets in his liver. He is BRAF negative. He is 47 years old and otherwise very healthy. He got into a clinical trial for yervoy and opdivo. After 3 treatments (the day before the 4th treatment was scheduled) he had a scan that showed the tumors had not responded to the treatment. The tumors were growing rapidly. They had spread throughout the liver. Numerous mets in both lobes, the majority being the left lobe. Mets had also spread to the mesentery membrane. 2 small mets in lungs. His LDH levels were 2443. His oncologist admitted him to the hospital to get taxol/carbo in him right away in hopes to slow the rapid growth. He has had one treatment and will have another on Jan. 8th. We saw his oncologist yesterday (dec. 30th) the swelling in his liver seems to have gone down. He feels tired, discomfort in abdomen, of course. He has lost a little over 20 pounds. He is very strong, works still partly from home. His oncologist referred us to Dr. Salama, a high risk melanoma specialist at Duke. We live in SW Virginia. Does anyone have any opinions about Duke's melanoma center or any other advice to give? Thank you for your support. Prayers to all of you who face this terrible disease.

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Anonymous's picture
Replies 6
Last reply 1/4/2016 - 1:06pm
Replies by: Lil0909, Anonymous, mjanssentx, Cee, Becky

I have read a lot of people are against in and saying people are a fool to do the treatment 


I was given 3 options 

wait and watch 




i had choosen interferon because I don't want the long term effect damage from yervoy like liver damage tyroid problem etc etc..  


I am am just wondering for those that was on interferon treatment what side effect was the most problem and did you really loose a lot of hair?   What is the best advice to get through the hard treatment, what help keep you immune system up etc..   Please don't call me a fool I am just asking for some advice and hear from other that was on it.... All that matter is we are all fighting in the battle and asking for the same support,,, 


thank you and my thoughts are with all of you 


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Lindsayblueyes's picture
Replies 5
Last reply 12/31/2015 - 10:46am
Replies by: Anonymous, SoCalDave, Lindsayblueyes, kylez, Janner

Going on a 10-day Caribbean cruise next month. Any suggestions for the best type of sunscreen to use? Any ingredients better than others? Thanks.

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Replies by: CHRISNYC, kylez, Anonymous

So my husband had to change healthcare plans , and kicks in on jan 1 with orginal medcare, part F and prescription part D.  He is only 64 but disabled from a car accident 14 years ago.  When we first started his medication, the specialty pharmacy hooked us up wiht the Patient Access Network - she was so kind, they took care of everything.  Our allotment of $ is coming to a close, and won't cover next months medicine.

Its kind of scary, we need to switch pharmacies and tomorrow I will call the Patient Access Network and ask them if we can reapply.  I have a good job, but without support our meager saviings will quickly disappear.  The cost of the drugs is freaking my husband out.......I will be on the phone tomorrow, I just went onto the Novartis site and another co-pay support site.  Charles is on the Braf combo MEK and Tafinlar.........he is stuborn and proud and now sick with worry about using all of our $, making initial noises of if we can't afford it he won't take it anymore.  I know that he doesn't mean it, but the stress that is starting to build around money is a dark clound on us.................

Can anyone share of any sites or resources that you used to assist you to pay for your medication?  We file jointly, we might have to split tax crazy financial wizardry just to get by.  Any stories or what has been working for you would be such a relief to recieve. I see so many Go Fund Me pages....that can't be us, there has to be other resources.

Thank you, 



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Donnasue0611's picture
Replies 3
Last reply 12/30/2015 - 12:12am
Replies by: Janner, Donnasue0611

Hey guys. I'm new here. My son has had several severely atypicals removed (he's 15)...and we had another removed yesterday. I understand his. I know what to look for now and I even have pointed out several to my Derm who agreed that they needed to go. 


I had a mole removed that bothered me. I picked at it several times (I know bad idea)...and this last time it grew back darker and stung a bit. It also looked very few around it periodically throughout the day. My Derm said it looked okay but he always takes off what I want. It was perfectly round but was elevated. It came back as "severely atypical melanocytic hyperplasia" which my Derm says isn't melanoma or melanoma in situ...but the step before it. 


Many questions. What do I look for in these lesions to insure that I don't have more?  How close to melanoma is it?  Do all melanomas cause some sort of discomfort???  Or  not?

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chrisholder's picture
Replies 4
Last reply 1/4/2016 - 8:30am
Replies by: chrisholder, tbh1835, jyc

I've posted a few times, but many may not remember... Diagnosed with mm in right max. sinus in May of this year, started ipi/nivo course in June but knocked out of trial after two infusions with hepatitis, blown thyroid and long hospitalization.  Once recovered from side effects started Pembrolizumab (Keytruda) in Sept which has kept tumor confined to sinus - and no mets so far.  But since the tumor is still growing I will start aggressive radiation next week for 7 weeks while continuing Pembro to retain its benefits and to possibly gain the Rad-Vax effect (synergistic effect of dying cells being transformed by Pembro into a 'vaccine' against further cancer cell growth).  Likely will lose the sight in one eye where the tumor is encroaching, but hopefully will drastically reduce tumor size.  As many of you more experienced than I know, the side effects of the radiation will be very difficult and some likely permanent.  Would be grateful to hear from face/sinus radiation veterans about how you dealt with sores/burning/loss of salivary/loss of appetite, etc.  Thanks!  Will update as I can.  Chris

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EJJ's picture
Replies 3
Last reply 12/30/2015 - 11:30am
Replies by: davekarrie, EJJ

I am a third generation melanoma survivor in my family. Dx in 06 returned 08. My Derm. I have been seeing since 06 has retired and I am now looking for a new Derm. Those of you like me know just any old Derm won't do. Does anyone have advice on Derms. At Mayo in Rochester MN?

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On Christmas Eve I noticed a dark spot on a mole that I've had since my teen years (52 now).  It is located directly between my breasts in an area that is extremely bony.  (images attached, one is closeup--I am now horrified that the discoloration is larger than I was able to see when the photo was just saved on my phone.  Glasses, soon!)  I am having it removed at my primary physician's office tomorrow and the nurse mentioned doing a shave biopsy, rather than a punch, when I told her the location.

I just had a punch biopsy done on a the lower leg for a brand new dark spot that appeared (was atypical nevus with dysplasion--clear margins on the biopsy) and it seemed deeper than it would be possible to go on my chest without hitting bone.  

Has anyone had a punch biopsy over a bony area (chest, shoulder blade, elbow, kneecap, shin, etc.)?  

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