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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bikerwife's picture
Replies 5
Last reply 4/12/2012 - 1:47am

scans showed today that some sharnk some grew and some new ones. Dr doesn't want to wait. For next scan wants to start zelboraf. Also going to do 5 radiation treatments on tumor under arm. I'm confused he said this scan would show growth before we had it. Says he's afraid if he waits ippi might not work but even though we doing zelboraf ippi might still work.
Feeling pretty bad at this point. Does any one know anything about zelboraf?

I'm still prayi

ng for God to open doors.

What God leads u to he will. Lead you through

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justlittleoleme's picture
Replies 9
Last reply 4/12/2012 - 1:41am

Mondays scans showed more progression. One spot on lung, right rib, spots on pelvis and spine grew.
He is in the hospital still trying to get his liver back to normal. May be adding cellcept to the mix and start weaning the steroid. He is now on insulin to get the sugar under control from the steroids. Need to get on with the fight! Temodar is next up!

We don't know how strong we are until being strong is the only choice we have.

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Bonnets's picture
Replies 22
Last reply 4/28/2012 - 12:35pm

My husband went to the dermatologist in Oct. 2112 to have his "spots" checked. I had been concerned about one on his cheek for at least a year. Nothing was recommended at that time, (Oct). I had him return last month, at which time a biopsy was done. The results are: Malignant melanoma, spreading type, Breslow thickness at least !.MM, Clark Level IV, 3 mitoses, ulceration present, lymphoid infiltrate, present, non-brisk. Lesion extends to deep margin and a lateral margin of specimen.Ulceration is present.

He is schedualed to have the lesion removed on  the 20th, preceeded by a sentinal node biopsy, and with a possible neck node dissection.

Needless to say I am alternating between crying and being angry at the DR. who did nothing in Oct, and am wondering, if the nodes are envolved, what chance for treatment is presented. Also wondering if the partial excision for the biopsy will spread the cancer.

Hubby had a triple bi-pass 6 weeks ago,, and now this too. Went thru 6 years of chemo etc with my daughter who passed away of Breast Ca at the age of 33!

Any input is appreciated.

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I was diagnosed with melanoma almost 2 years ago. It started with mole on back of my head, then spread to lymph nodes in left axilla. In January this year PET/CT scans showed 4 new spots on liver. I'm BRAF negative so Zelboraf was out of question. I started IL2 (HD) at MD Anderson and after 2 cycles found out that tumors keep growing (5cm vs 2.5cm in just 5 weeks). My doctor is now suggesting to go with combo of Cisplatin, Vinblastine, Dacarbazine, Interleukin, Interferon. Ipi is not recommended at this point due to fast progression of disease. Does anyone have experience with this treatment? Any advice?



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Anonymous's picture
Replies 45
Last reply 7/8/2016 - 11:37am

Has anyone else here been diagnosed mucosal?

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24hourmom's picture
Replies 10
Last reply 4/11/2012 - 12:27pm

 I had to create a new login (24hourmom)--I wrote an original post as 24hourmommy. No matter how I tried, I couldn't login under the old name. I realize my post is very long, I'm sorry. I log on a lot and read for support, but today I need to post. I just don't know where we are headed with all of this and the doctors have been very vague.

After I posted last May, my husband's 3rd Yervoy treatment was cancelled due to the diarrhea and he  was put in the hospital for the entire month of July.

We were told in early July that scans showed shrinkage from the 2 Yervoy treatments  but then August scans told us the melanoma was growing again. He went through all of that suffering for almost two months and if he'd had the 3rd Yervoy treatment, I think it would have been deadly.

In August,  I took him to Columbia, SC to get into a Zelboraf trial and he was accepted. Then Zelboraf was approved early and he was removed from the trial. He started Zelboraf as a prescription in September.

He has been on Zelboraf since Sept. and his Nov scans showed us "considerable shrinkage in all areas of concern", his spleen, lymph nodes and lung and liver all responded. His doctors were thrilled and he was uplifted.

We went for his routine three month scans 3/16/12 and were told there is new activity in his liver and his brain. He had to stop his Zelboraf to start radiation, due to doctor's concerns about skin problems.

We started Whole Brain Radiation (14 treatments). He has one lesion (2cm) on his cerebellum, we're told he'll need pinpoint radiation later  for that and many small spots that they hope the WBR will help.

The radiation oncologist did not want him to start a steroid initially because he wasn't having headaches and said the steriod can damage his liver (which is already a problem) but we had to start the steroid last week. The headaches started and he was vomiting. Now, on the steroid, the headaches are under control.

The nurse intially told him not to drive. Then the doctor told him he could drive at his discretion but said "not to quote him on it and don't go on the interstate". I'm  confused because I don't think he should be driving as one doctor told us he could have a seizure at any time.

He will recieve his last WBT tomorrow and can restart Zelboraf  next week. We won't go see the doctor again until May or have scans for at least 6 weeks. I guess now is just the time to wait and see.

He is exhausted all the time and I am getting mentally worn out.

I feel horrible just writing this because I know it must be harder on him than it is on me but the focus is continually on him and this disease. The efforts I make toward normalcy are met with resentment and then I feel guilty. I am so sad for my kids this week because it is Spring Break and they need a break from all of this.

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melmar's picture
Replies 6
Last reply 4/11/2012 - 10:36am

Just wanted to report that I just had my first 12 week scan since starting Merck's anti pd-1, and I am thankful to report that it appears to be working! Spot in lung shrinking. Spot on back shrinking. Most importantly no new spots in brain or elsewhere! Will keep posting future results as I know many are following this study. Thinking of the rest of you out there and hoping for additional success stories.

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OB Mike's picture
Replies 3
Last reply 4/26/2012 - 9:19pm

I am finishing my 4th dose of ipi soon and my abdominal tumor is still growing causing me shortness of breath and weight loss. Does anyone have information for my onc about raditaion therapy?

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H555's picture
Replies 3
Last reply 4/10/2012 - 2:25pm

I just took my first dose of 4 pills, with much gratitude and hope about an hour ago. any tips from those of you who've taken this med in terms of foods to avoid, supplements that you think help hold off the possible resistance, things that seem to work for you? I understand the hugely increased sensitivity to sun exposure and will take care, taking them with a full glass of water, and then have meds left from the side effects caused by Interferon for nausea etc. i take Celebrex already for arthritis and BP meds.  my earlier posts and now my profile describe my mets, prior treatments and how i got to stage IV. thank you. Ron

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Mitt's picture
Replies 4
Last reply 4/10/2012 - 9:46am
Replies by: Janner, Webbie73, Mitt


    We just learned today of the diagnosis.  All we were told is that it is 0.6mm witha Clarks staging of II.  We have an appt with a general surgeon next Mon. for excision of the remaining tumor.  Does anyone know if waiting a week is too long or should we get into someone sooner?  Also, should we be going to a more specialized surgeon?  Thanks so much - Mitt

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Karin L's picture
Replies 6
Last reply 4/11/2012 - 4:26pm

Today is 2 days shy from 1yr. ago beginning 2 courses of HD IL2.  I had a PET/CT and the results were amazing.  No signs of disease in the lymph nodes, liver or bones.  One area did light up however, and that is the L5 area in the spine (I did have disease there previous).  Getting a lower spine MRI to determine exactly what is going on and we will go from there.  I have had some severe neuropothy in both hands and feet (to the point I could feel nothing up to my knees) and other parts of the body were pins and needle feeling also (lips, teeth, etc.) and the neurologist thought the pain in my right leg was from a pinched nerve.  After completing Solu-Medrol and tapered off Prednisone the neuropothy is under control except for the right leg area still having numbness.  This is all connected somehow so we will get it figured out! 

I almost made it into the 6% club!!!  I choose to believe I just might get there yet : ).  As bad as it was within the liver and the bones...this is crazy good news!  Gone, all gone but this one area.



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pbnjelley's picture
Replies 5
Last reply 4/10/2012 - 2:17pm

Hi!  I started Zelboraf in late February for a Stage IV diagnosis with mets in my lungs.  Before that, I was on the ipi trial and was non-responsive to that treatment.  I've had just about every side effect listed for Zelboraf and have had to reduce my dosage to 480 mg twice a day but the most worrisome for me right now is hair loss.  See, I'm also engaged to be married in September and I realize that of all things to worry about with my diagnosis, the vanity involved with losing my hair is kind of a ridiculous concern right now,  But I am human and hoping that I can have my own hair for my big day.  I have lost quite a bit of my hair so far and just wondering if anyone out there has completely lost their hair because of Zelboraf.  Is there an end in sight or should I just start looking for a wig? 

I check the message board often and am uplifted by all the good news of people who are on this treatment. 

Today is my day!

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blairashley's picture
Replies 8
Last reply 4/13/2012 - 12:10am

Hi all.  Just received word from my oncologist that my lymph node biopsy (right armpit) contained spitzoid cells and he recommends being aggressive and treating me for stage 3a. 


I am having a PET scan & brain MRI on Thursday, plus a pre-op appt to remove more nodes.  I am really confused.  Not one month ago I was told no further treatment was necessary after my February wide-excision & inconclusive SLNB.  What are spitzoid cells anyway?  Doc said they're common in younger people (I'm 29). So confused as to what's happening......  Guess I'll know more on Thursday. 

Any advice?

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olivermb's picture
Replies 5
Last reply 7/12/2012 - 8:21pm
Replies by: Sia, alicia, AngelaM, olivermb, Janner

Hi Everyone,

I was recently diagnosed with my second in situ (my first was two years ago). Both were caught early. I've had a number of dysplastic nevi removed, and I have many moles (though the biggest ones are probably about 5mm, but those aren't too many).

I'm just kind of flipping out over the diagnosis of a second one. Thankfully, both were caught very early -- characterized as early or evolving. But now, with my moles and atypical ones, I'm feeling like a walking time bomb.

I've read the stats that about 8-12% develop second primaries, but does anyone know the likelihood of developing 3 or more if you've already developed 2?

I'm trying to come to grips by recognizing that I have a full-body photo done, that I'll be seeing my derm even more regularly now (3 months), and that I do monthly self checks. But somehow, this isn't reassuring enough for me right now. Scared, scared, scared.

I feel bad about even expressing these fears given the things people on here have gone and are going through. You have my greatest admiration.

Any thoughts are welcome.

My best,


age 47

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justlittleoleme's picture
Replies 4
Last reply 4/10/2012 - 12:57am

Off to IU tomorrow for repeat scans to see if my hubby is an ipi responder.
He is scheduled for an infusion of Zometa tomorrow too.
Praying the ipi worked and the three spots on his spine and pelvis are smaller and there are no new ones. We really could use some good news!
His oncologist is thinking of starting Temodar if there is any growth of the spots. I am worried about that. He continues to lose weight. Could be due to the high protein diet due to the high dose of steroids he is on.
We are scared!

We don't know how strong we are until being strong is the only choice we have.

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