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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beans920's picture
Replies 3
Last reply 9/28/2016 - 8:47pm
Replies by: beans920, Polymath, Fen

Hello to everyone,  I have been a poster in the past  but have not had much to say as I awaited my quarterly scans.

Finally had my Pet scan, MRI and blood work on Wed.  I have had 2 wks. of radiation  and was started on Pembro now receiving my 6th dose.  Blood work was all in normal range. Full  Pet scan only showed the tumor on my sternum which has shrunk by 60%.  I figured it was down as I couldn't feel it anymore.  I did have a speck  show on the MRI on my left front brain area.  Dr. not sure if its new as I have not had MRI before always full body Pet scan.  Pet scan showed nothing active in brain area.  Will repeat MRI in six weeks during my 8th dose of Pembro.  No side effects yet, feeling good.  Prayers and Best wishes to everyone out there.   Beans

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CindyCo's picture
Replies 13
Last reply 9/25/2016 - 7:25am

My mother was diagnosed on September 6 with Anal Melanoma.  After CT/MR/PET scans, we have learned that the mass is 4 cm and that it has spread to her inguinal lymph nodes, but nowhere else.  The doctor told me that she has 10-15 months due to micro metasteses, which broke our hearts.  However, I see that there are a lot of long term survivors on this message board. 

Does anyone know of a survivor with a mass as large as 4cm? Even the cutoff on the drop down menu is 4mm, not cm. 

My mother is also afraid of an APR, especially since the doctor told us that he wouldn't recommend it since it won't extend her life. 

We are part of Kaiser Permanente, which does not seem to be very specialized in this area, but since it's a closed network I'm having a difficult time trying to get them to agree to giving her a second opinion at one of the bigger institutes I see all over these boards(EX: Dana Farber, MD Anderson, Sloan Kettering).

We have also put her on a vegetable-heavy vegan diet for the time being.  We figure this can't hurt.

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BrianP's picture
Replies 2
Last reply 9/22/2016 - 11:47pm
Replies by: debwray

Research at MD Anderson trying to discover why immunotherapy doesn't work in some patients.

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Spl25's picture
Replies 4
Last reply 9/23/2016 - 11:57am

I'm a male, 30 yo. Diagnosed in July-  stage 4 w multiple mets to bone, liver lungs and spleen. largest tumors are 2-3cm. I've been on pembro since august 4, and have my first ct/MRI coming up. If it shows progression of disease, is the next logical step ipi/nivo? Fairly certain I'm braf mutated. If I'd like to explore clinical trials/travel to MD Andersen etc, should I pause treatment to do so? Or jump right into whatever my doc here (a Midwest NCI research Hospital) recommends? Perhaps they have their reasons for doing so, but my doctor has been pretty opaque about what they will do next. 

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snow white's picture
Replies 9
Last reply 9/23/2016 - 7:21pm

this is the trial that they are talking about for my Dad.  Have you heard of it?


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Lizz's picture
Replies 9
Last reply 10/5/2016 - 10:17am

Hi I was diagnosed with melanoma three weeks ago.  Its all very scary and everything feels so uncertain.  I just want to make sure Im doing everything I should be.  I had an appointment yesterday with a surgeon who said at the moment I was at a stage 2b.  He spoke about a sentinel lymph node biospy giving me the impression that this was not the best route to take and I should just "sit and wait" and see how things go.  I really dont want to just do nothing and wait for the melanoma to spread!.  I decided to go for the sentinel lymph node biospy regardless.  I am hoping to have an appointment within the next two weeks.  The brislow on my nodular melanoma was 5.5 (on my arm), I get the impression that because it is so large that it is likely that the melanoma has spread?  Anyone else had a sentinel?  If it has spread to lymph glands does that mean it has probably gone elsewhere as well.  Sorry for all the questions but  im new to all this. 

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itsme.mimi's picture
Replies 5
Last reply 9/23/2016 - 1:03pm
Replies by: Julie in SoCal, itsme.mimi, Anonymous, debwray

Hello folks, I am wondering if anyone has had intransit met that itches? If not, anyone have an itchy mole diagnosed with melanoma that was not nodular type? Any help is much appreciated.

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Julie in SoCal's picture
Replies 15
Last reply 9/27/2016 - 1:02am

Greetings Friends,

Yesterday I saw the Rock Star and did the "paper work" and body work (blood, ekg, and pee in a cup) to join INCB 39110-17.  I'll have to have scans again but provided lung tumor is still there (short of a miracle, there's no reason it wouldn't be) I'll start Day 1 Cycle 1 next Wed- Phew!  Maybe this roller coaster ride is coming to a full and complete stop or at least maybe slow down a little.

I don't know if I'm on the JAC1 or PI3-k arm, but either way I'll get it a drug with Pembo and I've responded Pembro well in the past. So I'm hopeful.

Meanwhile I'm tired.  All the hurry up and wait has been stressful.  Not knowing what the plan is has taken a toll. I'm very glad to have a plan.

Thanks again for being fellow companions on this wild ride.





Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 VATs

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Redlo8's picture
Replies 5
Last reply 9/25/2016 - 11:24pm
Replies by: Redlo8, Anonymous, MoiraM, debwray

Hi Everyone,


My wife is 55 and has Stage 4 Metatastic Melanoma, She has been on Keytruda for 18 months. It is doing its job very well with all "spots" gone or shrinking significantly.

She has a few of the common side effects like tiredness, skin irratations etc but one that seems a little less common is a lip reaction.

Her bottom lip (top lip is fine) has swollen to twice its size and is constantly bleeding or forming a blood blister, overnight it scabs up only to fall off in the shower and start the process all over again.

While not extremely painful it certainly looks very nasty. Along with this her gums also regularly bleed and she has bad breath from the constant blood in her mouth and the innability to brush her teeth very hard.

I have searched all over the internet for other peoples's stories that may offer a solution but have been unable to find many references to this ailment.

Her doctors have prescribed so many different creams and ointments, speciality bandages etc but nothing has made much difference, if anything they make it worse. The most effective product to date has been petroleum jelly, it is not a cure for the lip but it seems to hold it at the current level for a long time.

She has had this now for approx 12 months with it steadily getting worse.

Has anyone had this issue or know of a product that may help the situation? I often wonder if it is psoriasis (she got this on her hand and arm when Keytruda was first injected) but this cleared up after using a product called Moo Goo. Unfortuantely this product hasn't helped her lip.

Any info would be greatly appreciated, and if anyone would like some positve news on Keytruda or would like to ask questions please feel free to ask.

Kind Regards



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Anonymous's picture
Replies 2
Last reply 9/22/2016 - 1:44pm
Replies by: itsme.mimi, Mat

I had a stage I melanoma in 2006, had WLE, never a problem since. I do not think of melanoma much anymore, so it did not even occur to me until today to look up possible melanoma symptoms, for the constant itch i have with a flesh colored looking mole on my leg. It has been itching on and off for weeks now, but last couple days, it has been worse than before. When I went to take a look at it tonight, I noticed another pinkish, circular lesion, about 2 inches up my shin from the itchy one. Is there any possiblity that they could be intans-it mets? Would they itch? My original melanoma was same side, on bottom of my foot. 

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Momofjake's picture
Replies 9
Last reply 9/25/2016 - 7:01am

Hi all,

Took me awhile. Jake was disappointed in his scan results, but he got a "stable disease". It's not too bad. Hard part is the dr says the TAF has hit it's plateau and he wants Jake to start ipi now. Jake says he wants to try MEK. I don't even think it's an option. Our onc thinks the TAF alone only lasts an average of 6 mo and Jake is 4 months in. He says there are not other options, just ipi. Jake doesn't want ipi. Hates vitiligo. Onc also says the cancer can come back aggressively when it does. Jake is still very tired but looks good. Clear lungs, almost clear spine and so much improvement really shows! He played tennis today:) He also apologized to me on the way to his was emotional for him. Sept 12 marks two years. 17-19 yrs old sick. Hoping the TAF hold it back:) 

thats our are you Josh????

Thanks for the scan support:)'Kerri


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Anonymous's picture
Replies 2
Last reply 9/22/2016 - 10:13am
Replies by: Anonymous, debwray

Had surgery in July now and biopsy was good. Now I've developed fluid around my lung my leg continues to swell. I'm not sure if this is related to melanoma but X-ray showed normal heart and lungs. No lung disorders. Waiting on results of CT Scan just wondering if anyone else had a similar experience. 

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Aaron's picture
Replies 4
Last reply 9/22/2016 - 11:35am
Replies by: KAF, WithinMySkin, Anonymous, Polymath

So I met with my dr's nurse practitioner and am now in the process of weaning off of prednisone and getting revved up to resume nivo treatment after my pituitary issues.  I wanted to get more details about my shrinkage and told her I never got my email giving me all of my results. She read most of my results and all of my tumors have shrunk by 1/2 roughly. There is one tumors though that was never mentioned and has never been mentioned before that has grown. I would not have known about this tumor if I had not read my exam results in my email. I have an enlargement of the porta carval lymph nodes that is over 2 cm in size that the  results state concerning for metastasis. I am keeping faith that I was not told about this for a reason as it is undetermined or maybe some underlying factors I do not know about. Just a little bummed that I was all go and realize that there are still many obstacles in the way on this bumpy road. Part of me just had the inclination that I'll take the meds, get better, and move on and I still have that basic belief. Just worn down a little. 

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jpg's picture
Replies 7
Last reply 9/30/2016 - 6:36am

My doctor just told me that there is no evidence to show it is of value.  Anyone have any good studies saying otherwise?

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I know we all insist that your oncologist matters...and it does!!! A specialist in Melanoma stays up-to-date on all the newest information and medications, giving you a greater chance of good outcomes.

But do we focus as much on our surgeons?? All surgeons are NOT created equal. Here's a new study out thats a good guide on what you should look for and what you should ask before surgery to get a better outcome.

Always do your homework and keep fighting!




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