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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Anonymous's picture
Replies 0

Hello Friends, My sister is two months out from her last WBRT for two large mets to the brain, she also has it in her lungs but the combo chemo drug she was on before WBRT was shrinking those, unfortunately the cough is now back again and we are worried, she had to be taken off the combo drugs before WBRT started, and to be honest the side effects from the radiation were worse than we thought, it has affected her walking and one hand is affected and also her congnitive is affected, she forgets things easy and she can  get very anxious, and aggressive even at times, she is on 2000mg of Keppra so thats not helping, she is starting ipi next Friday and we are delighted with that, but speaking to her today on the phone she is totally flattened, she has no energy at all and I'm worried she will not have the strenght to deal with this new drug. She is only 49 and she is my light in a storm, Im devasted I cannot be with her each day as she lives in Queensland and I live in Europe. She is the greatest little battle soldier you can find and has am amazing husband who cares for her day and night, but I'm so worried today as her strenght was not there and what if she cannot manage the ipi, What worries me about all this is the side effects of the radiation have worn her down we never expected this, will these side effects go away or are we hoping for to much.

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yazziemac's picture
Replies 6
Last reply 4/28/2015 - 6:44am

Just got back from the cancer centre where Pete was fitted with a catheter that was necessitated by the fact that he can no longer urinate.  They believe it's due to the brain mets.  Just waiting for this liver inflammation to go down so that he can get back on the Ipi.  Homecare is coming tonight to show us how to manage the catheter at home.  Honestly, between his cane and now the catheter, my 56 years old husband is like an old man---breaks my heart.



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jessann's picture
Replies 3
Last reply 4/24/2015 - 5:46pm

Hi! New to the board and had a crazy ride so far. A mole I have had since birth, had a melanoma arise within it. Has anyone had this before? My first bioposy came back as: Clarks level III-IV with a lesion with app depth of 1.5mm, superficial spreading., but also said features that might suggest its arising from a congenital nevus, and should be considered approx. This triggered my surgeon to warrent a 2nd bioposy by someone that specialize more in melanoma. The 2nd report came back OPPOSITE! showing: Malignant Melanoma, superficial spreading, probable anatomic level 1 in-situ. WOW so now what do we do? I saw an oncologist who suggested I either do full surgery (SLNB and excision) or send it again to Dr. Mihms who deals with complex cases. I just got the new results today. It does explain it a bit more and I wonder if anyone has been in the same situtation? Malignant Melanoma, superficial spreaking, level IV, and a measured thickness of .55mm, arising with a compound congenital nevus with moderate atypia extending to within 1.5mm of the lateral margin. no ulceration, regression, or vascular invasion. Recommended a re-excision and the question of SNLB is left to the patient and physician. I haven't talked to the oncologist yet, no one calls back and I leave so many message (frustrating). And on another note I was scheduled for surgery today (because the oncologist said the 3rd results would be back mid week and as of last night at 5pm the nurses couldnt find them). So now my surgery will be this coming week and I am left to decide the best treatment. Any thoughts from the community? Also, with the full surgery, what is recovery like?

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flaglerjoe's picture
Replies 7
Last reply 4/24/2015 - 10:04am

Anyone else have the SLNB weeks after the WLE? They initially measured my melanoma as thin based on the punch biopsy, and after the WLE, pathology showed that it was actually a 2mm depth. Tomorrow I am going back from the SLNB that they did not do initially several weeks ago. 


I know this isn't ideal but I wondered if anyone else had theirs a while after the initial WLE?

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1derdog's picture
Replies 1
Last reply 4/24/2015 - 1:03pm
Replies by: arthurjedi007

I could really use some positive information on my husband's latest ct scan.  7 months ago my husband had a lesion in his right middle lobe which was removed successfully by VATS procedure.  They got it all & deemed him NED.  Now, in his latest CT scan they found a 2.9 cm lobular lesion just medial to the uncinate process of the pancreas invading the superior mesenteric vein.  He is being scheduled for a pet scan next week to determine if it is melanoma again.  His doctor doesn't think it is but obviously wants to eliminate the possibility.  Is anyone on this board familiar with something like this? The waiting is awful since we found out. We were so happy for the last seven months thinking that maybe this was the end of this roller coaster ride.  He had the mass in his lung for two years while on a clinical drug & it did not spread.  

Any words of comfort or information (good or bad) would be greatly appreciated.  


Thank you


wife (caregiver)

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tomw65's picture
Replies 2
Last reply 6/9/2015 - 5:06pm
Replies by: liberty04281, Mat

How long after the four ipi  infusions before testing to see if anything isworking or not


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yazziemac's picture
Replies 11
Last reply 4/30/2015 - 3:05pm


My husband, Pete, found out yesterday that one of his many brain mets is bleeding and his liver is very inflamed. He finished 5 days of whole brain radiation last week and was scheduled to have his 3rd Ippi infusion today.   He has to take a break from the Ippi and switch from Dexamethasone to Prednisone to try to address the liver and brain bleeding.  We'll be meeting with the oncologist weekly for blood work.  If he develops very bad headaches, we are to go to emerg.  I did a search on brain bleeds here on the forums and all the posts that I could find seemed to indicate that bleeding brain mets signalled "the end".  Is that the case?  No one has mentioned hospice to us at this point.  Pete isn't in pain, his only symptom is extreme fatigue and some unsteadiness with walking.  I would really appreciate your feedback.



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Jeffreyd's picture
Replies 3
Last reply 4/22/2015 - 11:35pm
Replies by: Anonymous, Julie in SoCal, mary1233

Hi All - First time posting here. I have stage IV melanoma that's spread to the brain and liver. I've done TIL therapy at NCI and have been on Dabrafenib/Trametinib for about 7 months. I'm planning to start Yervoy soon but would really prefer to do an anti Pd-1 (Keytruda or Opdivo) first if I could. 

Does anyone have experience getting insurance to pay for Keytruda or Opdivo before Yervoy? I understand it may be easier now with the NCCN guidelines and with the new studies coming out this week in the NEJM. Any suggestions?


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Anonymous's picture
Replies 1
Last reply 4/21/2015 - 2:56pm
Replies by: Janner


I unfortunately am not new here.  Although, I have been fortunate that I have never gone to this board to get information for myself, I now need it for a second family member. 

Here is what I know:

Diagnosed with superficial melanoma less than 1 millimeter thick.  I have not seen the path report yet to know whether or not there was ulceration or what the mitotic rate is.  The WLE was done last week and the path results are not yet in.  Met with oncologists today and they are opting to do a PET Scan.  Seems to me this would classified as Stage 1A or 1B and the SLND should be warranted.


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Hi all,

We're working with a reporter who is writing a story about skin cancer in Latina women. If you or a loved one is Latina, has melanoma and would like to share you/their story with the media to raise awareness of this cancer, please contact Thank you!

Lauren - MRF

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"Acute heart failure due to autoimmune myocarditis under pembrolizumab treatment for metastatic melanoma...... it is important to be aware of such rare, but severe immune-related adverse events."

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Anonymous's picture
Replies 2
Last reply 6/10/2015 - 10:54am

Does mucosal melanoma respond to immunotherapy treatments differently from cutaneous?  My father has a ery high tumor burden and was just taken off one of the pd-1 trials after only 2 mts since his scan showed many new nodules and no improvement.   His oncologist is now recommending yervoy.  Have any of you had experience with a similar situation?  

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arthurjedi007's picture
Replies 31
Last reply 7/1/2015 - 12:26pm

I've had a good 11 month run on keytruda plus 8 spots of radiation. Still it hasn't been enough. Stuff keeps growing. Since it's doing some good and it's fda approved I can stay on it until I get on something else.

Basically 7 are shrinking. All at or near radiated spots. 5 are growing including the t10 that almost paralyzed me last year. One new one is on or in my left kidney which is suprising because it is new and pretty much all my other new tumors in the past started in the bones and grew out. The rest of im assuming around 20 stayed the same. So I'm glad keytruda is fda approved because trials would have kicked me out. The docs were actually debating whether to give me it today and decided to because it is doing some good. After all keeping 20 tumors at bay and other stuff is pretty good but not good enough. Kind of weird how each scan shows things growing but they are usually different spots. Also by growing 3 of those 5 are declared that because of the uptake not thst they see a larger mass outside the bone. The other 2 are declard that because of the uptake and soft tissue mass is larger. The new one on the kidney is also a tissue mass.

im very suprised the scan wasn't better. But I'm glad finally Siteman did a fairly detailed report that at least listed each tumor shrinking and growing. Also it could have been worse but I was expecting much better. Way better than the first 3 meds where everything kept growing though.

Now to scramble and get on a new treatment. Siteman has 30 open slots for the ERK trial. It is BVD-523 by BioMed valley discoveries. It is part 2 of phase 1 where they have already figured out the dose and are expanding to more people. Depending on which nurse you believe either 1 patient has had a partial response or 2 patients have had partial remission. That is with about 16 patients none of which are at Siteman because they haven't recruited anyone there yet. About 5 places have this trial. The side affects so far seem very similar to zelboraf. Since neither zelboraf nor the taf mek combo shrank anything I don't think this is the right trial for me but my doc does but he was out of town so couldn't talk about it. 

Tomorrow I guess I'll call university of Chicago for an appointment with dr Gajewski or dr Luke and try to finally go there and try to get into their opdivo pd1 anti lag3 trial or see what their thoughts are on what I should do.

Also TIL with dr Rosenberg is still an option but based on what Catherine said I'm not sure if I should pursue that.

im disqualified from the huntsman virus treatment because of bone metastisis.

Since keytruda is not enough for the internal stuff the trials for lesion injections with pd1 are not a good choice.

A lot of the other trials like pd1 anti kir and stuff I'm disqualified for cause I've had pd1. Although I may be missing something.

im not seeing a Ido pd1 combo or anything that might be good unless I'm missing it. Wdvax is still phase 1 and I've heard nothing about how good or bad it is.

So I dunno really what to do. Quite awhile back a lady on here posted how the pd1 anti kir trial failed her and she decided to go to md Anderson. I never heard what treatment she did or how things turned out. Her way of thinking she already did a pd1 combo so she needed something else. So maybe they have something good I just don't know about.

I just don't want to make a bad decision but I don't see any really good options. Since the t10 is getting worse I feel I only have one last shot at a treatment. I have to make it a good one or I'm probably not going to make it further. Maybe instead of Chicago I should just go to md anderson or memorial Sloan Kettering. But those typically require flying and the assistant doc couldn't say if my spine was ok for it or not based on the pet ct. They would need a mri. But he did say there was no mention of narrowing of the spinal canal and stuff. Plus I can still sit and touch my toes fine which I couldn't do last year when I was almost paralyzed. So I dunno. Also I get wore out fast after only a couple hours traveling. Also I need lots of food and drink or I get weak. Plus my parents who have been taking care of me are not getting any younger. So I just don't know what to do.

Thank you everyone one for your prayers and best wishes. I wish I had better news.



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newmanmark's picture
Replies 4
Last reply 4/23/2015 - 6:18pm
Replies by: newmanmark, Ed Williams

I was wondering if anyone has any information on the treatment for melanoma mentioned in the last paragraph of this article.  It looks like there's some major progress being made.

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Anonymous's picture
Replies 9
Last reply 7/10/2015 - 9:49pm

I would like to know how long Keytruda treatment last. Hoping somebody on this board have experience with the treatment.
Good luck to all of you!

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