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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deardad's picture
Replies 4
Last reply 10/1/2011 - 11:38pm

Hi my dad is 10 months down the track after his original diagnosis of stage 3. He had a craniotomy for a single met 5 weeks ago. Now he has 4 mets in liver and one in his spleen. He starts B RAF in a week. A CT scan is organised before he commences the drug but Im wondering why they haven't also arranged an MRI? There is one booked for 2 months after surgery but should we wait this long? My concern is that his original met in the brain doubled in 6 weeks and bleed, and I'm hoping he might be a candidate SRS rather than another craniotomy. What would you do?

Has anyone heard of positive stories with liver mets? My dads cannot be resected apparently. We are living every day like life will end in months and its so heartbreaking. I need some hope.

Nahmi in Melbourne

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Anonymous's picture
Replies 6
Last reply 9/9/2011 - 12:23am

Hello All:

I am writing about my dad who was diagonosed with Melanoma a year ago.  His was very deep and it was taken out with clear margins.  It was recommended that he start on Interferon which he did with many complications and issues and stopped after 6 months.  He has been seeing Dr. Kirkwood in Pittsburgh as an add -on to his oncologist.  I have been in the medical field , one area being with Hospice so I have been extremely involved and with them through this difficult ordeal.  We were just in PIttsburgh where we were told my dad was cancer free for now and the same week received biopsy results from a local surgeon for something that just appeared on top of his head.  It is melanoma within 2 cm of the original site.  He just had the surgery and he now has a 5 inch incision on top of his head. He will return to Pittsburgh when the incision is healed, but wondering about being in a clinical study.  Interferon is not an option as he stopped it in May; Ipi has been mentioned and he is BRAF negative.  At this point in time the pet/ct is clear, but oncologists seem to believe that it is probably other places, but not shown up yet.  He had surgery 2 days ago and goes back to see the surgeon next wk.  Any ideas?  I have learned more about Melanoma than I have ever wanted to know and done so much research.  I am wondering about suggestions about any experts on scalp melanoma specifically and treatments .  They also classified my dad now as a stage 4 and I am confused by that.  At the present time with the tests we have at this time there is no cancer with the exception of the spreading from the original site on his head.  I thought stage 4 would be distant metastasis? At this time he has no lymph node or other organ involvement.  any thoughts would be so helpful! 

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Richard_K's picture
Replies 8
Last reply 9/14/2011 - 9:27am


December 1998 – Melanoma left cheek, Clark’s level IV.  Excised, SNB, all is good.

August 2007 – Myoepithelial carcinoma in left parotid gland.  Partial Parotidectomy, all is good.

October 2009 – Stage IV Melanoma in lung.  IL-2 no response, Zelboraf great response.

December 2010 – Squamous-cell carcinoma.  MOHS excision, all is good.

September 8, 2011 – Found out I now have prostate cancer.

The purpose of this post; is anyone aware of a site similar to but for people with prostate cancer?  Thanks in advance.


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j.m.l.'s picture
Replies 10
Last reply 3/20/2015 - 8:39pm

I'll be starting on Yervoy next week. I know everyone is different but could you give me some idea of what to expect right after dose 1 and also later on. I am worried about the serious stomach problems.

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Angela C's picture
Replies 11
Last reply 9/17/2011 - 10:12pm
Replies by: JerNYC, Anonymous, Angela C, NYKaren

Hi everyone.

Tuesday was my first dose of Yervoy. Prior to Yervoy, I was on the MDX-1106 trial. While on that trial, I experience sun senstivity and if I didn't cover up real well when going out in the sun, I would break out in a rash. I usually got it on my chest and sometimes on my neck. It usually would go away within a day.

So, Tuesday was my first dose of Yervoy. Yesterday I went on a couple of walks outside. One was 20 min the other was 30. I wore a hat and a long sleeve shirt, but I didn't button the top button of my shirt like I normally do to try and cover the skin on my chest. About an hour after my second walk, I developed quite the rash on my chest. Very red and bumpy. Then as the night continued, it showed up on my neck, behind both of my ears and on the top part of my chest. This morning I woke up and I have tiny little bumps on the skin around my mouth. My chest is less red, but the bumps are itchy today.

Now I'm trying to figure out what caused this. My last dose of the MDX-1106 was six weeks ago. Maybe some of that is still floating around in my system and caused this sun reaction? Or, maybe it's from the Yervoy? Or, maybe it's a combination of reactions from both drugs? The rash on the chest is not something new for me, but I've never had it show up behind my ears or on my face.

I know that a rash with Yervoy is quite common, but could it really show up the day after the first dose??

What do you guys think?


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jax2007gxp's picture
Replies 6
Last reply 9/8/2011 - 6:55pm
Replies by: jax2007gxp, Anonymous, lhaley, Lauri England, Donna M.

Hi all,

I received the results of my PET/CT and brain MRIs from yesterday....other than something minor going on in my thyroid (small potatoes compared to mel), there were no signs of any metastases.  I never thought I would be so relieved to have surgery confirmed!

The lymph node which signaled me to see the doctor swelled up pretty much overnight.  It was about 5 cm when an ultrasound was performed.  Because it was so large and had grown so quickly, I was concerned that may have been a bad sign.  I am so very thankful to have good results and hope others facing the early stages of this war will remember that sometimes it doesn't end up being the worst case scenario.

The next battle is to be fought on Friday when the doc removes the lymph nodes from my right groin.

Wishing all of us long futures of clear scans!!!


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PlantLady's picture
Replies 1
Last reply 9/7/2011 - 11:34pm
Replies by: jax2007gxp

Here is an interesting article

Frailty May Threaten Melanoma Survival More Than Age
Findings could influence individual skin cancer treatment, researchers say
First 2 paragraphs, for full article click on link at top of this post.

So, folks, pick up those dumbbells.


"It’s not how old but how frail patients are that can predict how well they will fare after a melanoma diagnosis. In fact, young patients in poor health may have worse outcomes than older patients in good shape.

A new study from the University of Michigan Comprehensive Cancer Center finds that patients with decreased core muscle density were more likely to see their cancer spread to distant parts of the body."

CJ  - wife of Ron, Stage IV, mets in lung, bone, adrenal. Unknown primary.


If you're going through hell, keep going. ~ Winston Churchill

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NYKaren's picture
Replies 11
Last reply 9/13/2011 - 9:32pm

Hi everyone,

came to Yale yesterday.  they do 2 bags a day.  had 1st last nite, second this a.m, 3rd in about 20 min.

everyone is great here.  It' defintely NOT NEW YORK.  (although there are some advantages to NY, epecially if you eat a kosher diet.  LOL.)  losing appetite anyway, always PB & bananas.

no side efffects to speak of till this afternoon.  Red rash on chest without itching, lower urine output (but I amazed them at how much I was putting out--lots of water,  low fever & flu-like symptoms.  Was shocked that I havenn't gotten the tremors, but we'll see what tonite brings.

I know I'll feel progressively worse, MIGHT post  in coming days, will definately do so after return Sun. or Mon.

You guys are great.

 take care,


Don't Stop Believing

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jmmm's picture
Replies 6
Last reply 9/12/2011 - 1:29pm
Replies by: rbruce, JerryfromFauq, Charlie S, Anonymous, MariaH

I'm looking for information on what other melanoma specialists are recommending right now.  My husband was dx with stage 4 in January.  He finished yervoy in July--2 tumors disappeard, but by the end of August, he now has 2 more tumors.  His doctor isn't a melanoma specialist--we have an appointment next week with one.  From the research we've done, we feel like there are 3 main options--Zelboraf, IL-2, and ACT trials.  We've found (from another patient), that John Hopkins recommends Zelboraf, following yervoy.  We're wondering what other specialists are suggesting now.  Thanks,

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mommydog's picture
Replies 13
Last reply 3/16/2012 - 6:10pm

My husband has been on this trial at UCSF for 26 weeks now.  His tumors have been reduced by over 74% and have gone from a total of over 15 cm to slightly over 3 cm.  He has had 3 PET scans, and there has been improvement each time, although it has been less dramatic each time.

Although I am thrilled, I am concerned about all of the comments that this treatment causes only temporary results.  What is the plan b?  When do we know that it is time to pursue another course of action?  Is the BRAF/MEK treatment always just temporary?  Since 77% of the patients from the Roche trials are still living, how do we know this to be true?

Thanks for any insight or advice.


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mommydog's picture
Replies 1
Last reply 9/8/2011 - 12:21am
Replies by: Charlie S

My husband has been on this trial at UCSF for 26 weeks now.  His tumors have been reduced by over 74% and have gone from a total of over 15 cm to slightly over 3 cm.  He has had 3 PET scans, and there has been improvement each time, although it has been less dramatic each time.

Although I am thrilled, I am concerned about all of the comments that this treatment causes only temporary results.  What is the plan b?  When do we know that it is time to pursue another course of action?  Is the BRAF/MEK treatment always just temporary?  Since 77% of the patients from the Roche trials are still living, how do we know this to be true?

Thanks for any insite or advice.


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Jewel's picture
Replies 3
Last reply 9/9/2011 - 12:17am
Replies by: FormerCaregiver, Jewel


9/2/11 my husband went back in for a re-excision of his original tumor ( 3 spots showed recurrance) all in same area. They did a full ELND due to the fact that lymph node was (is) swollen. If you go back and look at my last 2 posts you will see my husbands full history which started in Nov, 2010. We have not gotten the results back yet from ELND. I apologise for not having yet filled out his profile.

Now that the melanoma has traveled from his lower left calf to his left groin does that still make him a stage 3? Pet Scan and 2 MRI's one of head and left leg only showed cancer in calf and possible in groin.

It is amazing how well he is doing concidering the drains and the 3 X 8 inch graft they took off his thigh and put on his calf.

We are still waiting for the results.  If the groin proves positive in your opinion ( and I'm open to all) what would you do?

A very concerned wife who does ALL the research. My husband refuses to live in fear.

Thank you,


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Replies by: King, nickmac56, TracyLee

I wrote here last week and just thought I'd give everyone a quick update. My extreme headaches from last week have subsided, not entirely, but I feel much better. The weekend was not a fun one, lots of nerves and anxiety waiting on results.

But, good news...

MRI came back clean! Huge relief. Then I had my blood work done and it came back with very low sodium levels (126 vs. 135 normal). Instead of getting my 4th and hopefully final dose of Ipi, they sent me to urgent care. WTF? Ended up spending about 4 hours there, they treated it with 2 saline bags and brought it back up to close to normal, and let me go by 11 last night. Hoping to get back up there today for my final treatment. 

Quick questions for the board:

1. Has anyone experienced low sodium levels before? The nurse said it was not a common effect of Ipi, and the docs at urgent care were clueless as to what it could have been caused by. They did say that if it gets very low, it can be very dangerous. 

2. What are the common treatment options if thyroid levels are low. Is this permanent impairment? 

3. Still have not received much info into what may have been causing my headaches. A swollen Pituitary seems like the answer I get most, but again, my blood work for the pituitary (namely cortisol levels) were normal. 

Docs did say I may get an MRI scheduled for my pituatary area, which was not caught on my previous MRI last week, but said they were not as concerned in that area as there was nothing in my blood work to suggest anything is wrong with it. 

Anyway, hoping to be done with Ipi for good today and then can enjoy a 12 day break back in Colorado. 


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TomGlo's picture
Replies 6
Last reply 9/17/2011 - 7:49am
Replies by: TomGlo, Sherron, alicia, lhaley

Hello everybody,

I had nodular melanoma on my left side of the head in 2008. The treatment I received was wide excision and a sentinel lymph node biopsy, which came back negative. Two years later, in December 2010, I discovered an enlarged lymph node on the left side of my neck. After a biopsy, it turned out to be melanoma. My oncologist decided to make a complete neck dissection. Some other nodes contained little traces of melanoma, which means that I was diagnosed stage IIIC. After the surgery, in February 2011, I had radiotherapy all over my left neck area. I recovered really well from surgery and radiotherapy, and my last PET scan end of June 2011 was all clear. Bloodwork was excellent too.

A week ago, I discovered an enlarged lymph node in my groin, on the left side. It is not terribly large, but I can palpate it. I'm worried now, since I already went through all of this a year ago... . Does anyone know how likely it is that melanoma travels from my neck to the groin lymph nodes? I will see my oncologist next week to check it out.
Thank you for your advice.

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cincin1179's picture
Replies 24
Last reply 9/9/2011 - 3:47pm

Hi everyone - I was just diagnosed with Melanoma in August. It all happened pretty fast. I finally drug my butt to the dermatologist.. even though I had the mole and it didn't look right for a while. My initial appointment was August 17th, I got a call on August 23rd saying it was a 1mm melanoma.. and on August 31st (last wed), I had a big chunk of back removed and a lymph node taken out to be... tested. I seriously have been a mess. I have cried everyday and have been scaring myself looking at stuff on the net. I have my post-op appointment on Thursday and am hoping for the best but scared of the worst (especially since the surgeon freaked me out and said it was a little swollen). I will tell you one thing, it really opened my eyes to being smart in the sun. I guess I just need to talk to other people going through it at this point because as supportive as my hubby, family and friends have been... I still feel kinda alone with this one. So that's all.. nice to reach out to you all.

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