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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Patrisa's picture
Replies 3
Last reply 7/6/2016 - 2:21pm
Replies by: Polymath, Patrisa

Hey dear friends, 

can someone please explain the importance of the mentioned marker?

my fathers last report states that his s-100 is  bordeline elevated, his ldh is normal and all other clinical signs are normal... Is this something we should be worried about or it maybe isn't related to mel? It is higher than his levels from the last check up 3 week earlier...

he is otherwise on keytruda and his first pet scan (in may) showed total regression of his mets in the lungs and almost completely gone soft tissue met which was really large...

any input will be greatly appreciated...



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gigembritt's picture
Replies 2
Last reply 7/5/2016 - 9:35pm
Replies by: gigembritt, Janner

My recent path report says that my nodular melanoma is :

Clark level at least IV

Breslow Thickness at least .44mm


No what I am confused about it that it doesnt seem to match up.  The Clark level would put it past a depth .44mm right?

And why do they use "at least" ?





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Anonymous's picture
Replies 4
Last reply 7/5/2016 - 6:59pm

Doctor decided i should get scans every 6 months after yervoy. Do people usually get ct scans or pet scans. Thanks

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Anonymous's picture
Replies 4
Last reply 7/5/2016 - 10:22am
Replies by: MoiraM, Maureen038, Casitas1

Does anyone know if tooth decay (dental caries) is a known adverse effect of immunotherapy, specifically Keytruda and/or Ipi?

Thank you!

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JoshF's picture
Replies 19
Last reply 7/5/2016 - 10:19am
Replies by: Kimba67, Maureen038, JoshF, Mat, Bubbles, Anonymous, Polymath

HI All-

So things are took off fast this week!!! Been here in Houston since Sunday and have last procedure-leukaphresis tomorrow morning. They say cells should be ready first week of September.

I had 2 sub-q's removed by Dr. Wargo removed on Monday for potential future TIL Treatment. She's her and her PA Liz.

Met with research people on trials. Did all the screening, scans etc... scan wasn't great. Long & short of it was by my guess I have 7-12 tumors in lung, liver, pancreas and in abdominal area. Now that big tumor(s) are gone I think largest tumor was 2.4cm x1.6cm. They were mostly in the 1cm range. I didn't read it...too overwhelming for me. Dr. Diab said though there are a fair amount of tumors; this isn't an extremely large tumor load....and to be optimistic because he is. I guess I was more hopeful that the surgery removed a lot. Some grew a bit while others stayed the same. Apparently some smaller spots not picked up on scan almost 2 months ago are now in that 5mm range. Either sucks.

Dr. Diab is great and gave me a detailed rundown on Adoptive Cell Therapy. Honestly, everyone at MDA is very kind. I know some people think they're overrated. So far I've had good experience. I will start ipi back home in Chicago on Friday. Dr. Diab was going to discuss with Dr. Davies at MDA (my primary onc) and my local oncologist the possibilty of adding some abraxene or dacabarzine. The concern is that while I'm doing gap treatment, if I get colitis or other adverse side effect....I can be excluded from the modfied T Cell trial. It seems counteractive but he has science showing benefit....CELESTE????? Either way, ipi on Friday and probably looking at 2 doses before starting washout for trial. Is 2 doses enough to get a response? This is the scary part...the gap between growing cells and getting to treatment phase.

Still going crazy but have a plan....ang fighting to be optimistic.It's still so surreal how things just went haywire on me. I guess with all the years of just having a sub-q here there was a blessing; I just didn;t see it.

Be Well!!!




Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Replies 3
Last reply 7/5/2016 - 10:10am
Replies by: Kimba67, Anonymous, Janner

Can someone please explain:

Ive been reading all these stories about how people have melanoma in situ or stage 1 or 2 and then it suddenly reoccures in the lymph nodes or organs months to years later. My question is HOW? I thought in situ is 100% cureable with wide local incision - and about the same with stage 1 and 2. Would it be wrong pathology results? Or does this happen more often than what I thought?

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jvictoria's picture
Replies 10
Last reply 7/4/2016 - 11:56pm

Hi all,

Wanted to see if there was some insight on where to go, best place to get treated, what to expect. I'm playing the waiting game with my doctors to see what next steps might be.

I had an initial biopsy of the affected area July 2014... biopsy can back negative for cancer, positive for Lichen Planus. May 2015, same area was biopsied again... Biopsy came back melanoma positive... the unusual part of the melanoma is that it doesn't have any dark spots (aka colorless)

Was hoping for some insight as to where it would be best to treat this type of melanoma... I have a few options...

- Univeristy of Miami (Florida) Sylvester Cancer Clinic

- Northwestern University Chicago

- Moffitt Clinic Tampa, FL

Also, any general advice would be very helpful.



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Happy_girl's picture
Replies 2
Last reply 7/4/2016 - 10:29am
Replies by: Linny, jennunicorn

I just wanted to share that I was able to talk with my doc and she is very confident that the spot on my liver is a cyst.  Just wanted to share the good news! Thanks for listening while I had my freak out moments! 

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Peter A's picture
Replies 1
Last reply 7/4/2016 - 8:24am
Replies by: Bubbles

I received a liver in February 23, 2016 and have just had a growth removed from my nose on June 16, 2016. The biopsy report diagnosed a melanoma that was 1.4x.9x.6 cm under the skin. This was to be a scar tissue removal where a mohs procedure was done to remove a squamus cell growth on my nose 2 years ago. This was a total surprise as I have been through so many scans and tests to qualify and receive a liver transplant. The Dermatologist said it is a very rare melanoma and He thinks I will need to have a large portion of my nose removed and rebuilt to remove the cancer. As you can imagine I am on high doses of anti rejection drugs and my immune system is very depressed and fighting this cancer will be a challenge.

Does anyone have any insight on this topic ?

I do have appointments set up with a meanoma center in San Francisco to consult with a surgeon and melanoma specialist.

Thanks for any responce.

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keepthefaith11's picture
Replies 11
Last reply 7/3/2016 - 10:15pm
Replies by: keepthefaith11, kylez, Bubbles, jennunicorn, Anonymous

We are 6 months out from my dad's stage 3C diagnosis. The full body pet scan back in December showed no cancer. Except in the lymph nodes which were taken out. He also had a CT scan in April, completely clean.
They are now back in Europe for the summer and last night my dad had an epileptic type incident. (He does not have epilepsy. He was rushed to the ER and they did a CT scan of the brain. The doctor says he sees a couple of "shadows" in the brain but can't be sure what it is. They are doing an MRI hopefully tomorrow.

Obviously with the recent melanoma diagnosis one has to assume that these are mets.

I am hopefully wishing this is something completely unrelated. But I realized it's unlikely. What do we do now? If these are in fact mets, what is standard procedure? Celeste, I have read a lot of your blogs and they have been very helpful. It seems gamma knife followed by Opdivo or Keytruda is the way to go. But what about surgery? How big do the tumors need to be for that to be an option? This is all new to me and I am quickly trying to read up on it. We thought we might have beat the Beast. I want to make sure I am ready to talk to the doctors in Europe if it comes to that. I also read that gamma knife, immunotherapy followed by the BRAF Inhibitors is a great option. His cancer is BRAF positive.

I am completely devastated right now..:(

Thank you everyone,


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CourtneyDMiller's picture
Replies 2
Last reply 7/3/2016 - 4:59pm
Replies by: michaelinsocal, Mark82


Ever since I heard my diagnosis had the word melanoma in it, i havent been able to resume normal life. I feel so guilty because i should be extremely happy it the was cut it out and you are done kind, but i cant go a hour without thinking about it. I'm constantly checking myself for changes in moles/freckles and feeling for lymph nodes. I do have 3 papable nodes in my groin that i would guess are under a cm - I just had an aytypical mole cut off my buttock and leg, so I'm assuming that is why those are able to be felt. I also can feel one on the right side of my neck and two on the right. They are small as well, but they continue to freak me out. Two days ago i have also noticed that a mole on my arm has began to have a burning sensation. I am just constantly worries about everything. I want more moles/freckles taken off, but the doctors tell me that they are fine, and i should be done being cut on for a while. I had a full body check by my doctor as soon as we found out, and have already had all suspicious ones removed that she picked out. I have an appointment with a well trusted and liked dermatologist in my aera for a full body check again on 7/19. The thing im most concerned about is my lymph nodes.. what do you all think?

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Anonymous's picture
Replies 2
Last reply 7/3/2016 - 4:47pm
Replies by: Cynthia C, Janner

I want to apologize in advance my concern is no where near as important as most of the posts on this forum but I did not know where to go.

I recenty had to switch my general practicioner because my other doctor retired.  I was at my yearly visit with the new doctor and he had me strip down to nothing and examin my moles.   In 15 years with my previous doctor this has never happened.   I am 34 years old and in pretty good health.   Most of my moles look very similar light to darkish brown small spots... some have weird shapes but they have never changed.   I do have a good deal of moles but blame that on being italian and nothing has ever come from them.

I have a few moles that he freaked me out over.  One is on my left butt cheek ( Sorry).  It looks like a dark brown circle and I have noticed it for years when I get out of the shower.  I never noticed it changing its one color but it is an odd shape... it is about 3mm-4mm,    The other moles were on the tops of my feet.   I have about 5 normal looking moles on the top of my feet... again nothing has ever changed.


This doctor said that having any moles on areas where the sun doesnt shine is not a good thing and I need to be checked by a dermatologist immediatly.    I asked if my moles looked like melanoma and he said no.. but you should not have moles in these locations and this concerns me.    So now over the 4th of July holiday I keep thinking that I have had these moles forever and my anxiety is taking over. 

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youngann's picture
Replies 4
Last reply 7/3/2016 - 7:45am
Replies by: Anonymous, SABKLYN, youngann, jennunicorn

This question may be better answered by the long-termers here. If I were to start a fund-raiser to benefit Melanoma patients, which organisation would be the best one to donate the funds to?


Home of the original "Crappy Shirt"

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Niki's picture
Replies 9
Last reply 7/2/2016 - 8:19pm
Replies by: desertsun, Niki, Anonymous

Hi All,

I was very active on this board in the 2007 to about 2010 time frame. My husband, Joe, had a Stage IIA nodular melanoma (2.5mm, nonulcerated, high mitotic rate, though I don't remember the number at the moment) removed from his right earlobe in January 2007. He had no other treatment besides WLE/SLN. He also had a PET/CT scan for about the first two years. All has been well. We opted to stop the scans and move on. I have to admit I was obsessed with melanoma research for a couple of years. About drove myself bonkers (and I'm sure my husband too)! But, I did feel I was very well informed if he had needed to make treatment decisions in those years. 

Anyway, I've been out of the melanoma loop for a lot of years. About two weeks ago, Joe started having pretty severe pain in his left jaw area. He's had two tooth abscesses/root canals before, but he said this didn't feel like those did. He saw the dentist on Wednesday. She did bite wing xrays on that side and an exam and said she didn't find anything that would lead her to believe he had an abscess or anything along those lines. She referred him to an endodontist. He saw him yesterday. He also couldn't find anything and suggested a referrel to a periodontist. This is all fine, and we're hoping it is something dental though he has no evidence at all of gum disease. Endodontist gave him a Rx for amoxicillin (in case there's some kind of infection that's not readily evident) and 800 mg ibuprofen, which has helped with pain management since yesterday.

The pain has been up and down, at times very severe. So while pursuing the dental options, I thought it might be a good idea to get our family doctor involved. She thought with his history and with the dentist and endodontist not finding anything, it would be a good idea to get a head CT scan. That will happen on Wednesday afternoon.

So, here we are. I needed someone to vent to who would understand how hard the waiting is. Janner, if you're still here on this board, something you said all those years ago has really stuck with me. That was, "When you hear hoof beats, think horses, not zebras." I've thought back to that quote many times over the years. I shared it with my husband a few days ago, so I'm hoping he's looking for horses too!

Will let you know what happens. Thanks for listening. Niki

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Steve Plasier's picture
Replies 5
Last reply 7/2/2016 - 4:07pm

Today I did my fourth infusion of Yervoy so I wiill see what side effects I get from this one. My  Cancer Doctor told me I'll be off it for the 3 month period. He wasn't in today so I go back in two weeks to see him and find out lab results and what else is in store for me.


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