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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Lisa13's picture
Replies 5
Last reply 12/12/2011 - 10:36pm

I just had gamma knife for 2 brain mets almost 1 month ago. I've had no symptoms so far, but my eye feels weird which happens to be on the same side as the larger tumour. Maybe this is the effects of radiation or maybe it's part of a sinus infection I'm being treated for (on the same side). My eye started out with slightly swollen eyelid and tearing - that went away, but now the eye feels weird. No double or blurry vision, just weird, like something isn't right - the vision is weird at times. The Dr. said if I get much worse (antibiodics arn't working), then I'll probably have to go on steroids as it may be imflammation from radiation. Has anyone had this??

My Dr. doesn't seem concerned about another tumour in there, but I guess if things got worse, we'd be more inclined to check.  My oncologist was a bit surprised that the radiologist never gave me any steroids after the treatment - especially since it was 2.5cm.  I think because of it's location, he didn't think I'd run into a problem (not near anything).

Also read 2 articles about brain mets and ipi/zelboraf. Apparently when you get brain mets, the brain/blood barrier becomes less intact making it easier for these drugs to go inside.   This actually seems like good news to me.


Many impossible things have been accomplished for those who refuse to quit

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deeczar's picture
Replies 1
Last reply 12/12/2011 - 9:58pm
Replies by: Vermont_Donna


I'm suppose to have Isolated Limb Infusion at MD Anderson in a few weeks and wondering if anyone on here has had it done..Just looking for info on what I might expect and so on..any info would be appreciated...Thanks Dee

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My father is 85, Stage IV and last year was able to do the Yervoy trial on a Compassionate Use grant.  Due to the severe abdominal issues, and his being stuck in a wheelchair due to a spinal surgery, he had drop out after only two tretments.  Luckily, it worked for a while, he was cancer-free for nearly a year.  It came  back and he has been on the BRAF/MEK trial for six weeks or so.  Lately his mental status took a dive, wasn't even able to sleep, very agitated and completely confused/wacked out.  They thought it might be a calcium issue but now they feel it is low phosphorus and he is going to have to stop the BRAF/MEK treatment.  Has anyone heard or had any experience with a dementia from the medication?  I'm hoping the treatments he was able to have may work, as before, for at least a number of months if not longer.  But I am curious to see if anyone else had similar experience or symptoms.  Also interested to hear if anyone stopped treatment early and still had any positive outcome.  Good luck to you all and thanks for any light anyone might be able to shine on this for me.

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deardad's picture
Replies 7
Last reply 12/12/2011 - 4:01pm

Wow, just back from the oncologist and my dad's MRI came back clean. What a small victory for now in this aggressive battle.

6 months post craniotomy his brain is still clean...might be the Vemurafenib or just plain luck that it hasn't gone back there. Dad's oncologist is fresh back from the recent conference held in the States and he said there's a lot in the pipeline in regards to new trials. I know I learn more here than anywhere else and I'm thankful to all for that because he's pretty tight lipped about it.  Australia seems to be a little behind trial wise compared to the States.

Anyway the update is that he wants dad to stay on this drug for as possible then if the brain stays clean add MEK to the BRAF. After that maybe ANTIPD1 will be up and running here in Melbourne and dad may be eligible. 

Anyway just wanted to share some good news with everyone.

Take care

Nahmi from Melbourne

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alicia's picture
Replies 3
Last reply 12/10/2011 - 11:21pm
Replies by: deardad, jmmm

Hi friends, My friend i posted about early who is Braf positive just started zelboraf today.  He has a pretty high tumor burden with liver, spleen, lung and bone mets.  Is there anyone out there with similar situation on zelboraf and whats you info or advice you would give someone else on this drug.  what are the most common side affects, how long does it take to work, how often are you scanned to check for response? How long do you take the drug and can they increase the pills from more than 2 pills a day?  I truely appreciate your knowlege, experience, and advice.  Thanks so much!!!!


Much love,

Alicia stage 3 with mult primary tumors

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himynameiskevin's picture
Replies 16
Last reply 12/10/2011 - 7:48pm

Hey everyone.
There's not too much to update on, but it is another milestone in the journey, so I figured I'd let it be known for readers who still follow my posts. I just did my first dose of Ipilimumab/Yervoy. Although it's only been 5 hours, so far so good, hopefully any side effects will be minimal and I'll continue on with my future doses. And if I'm lucky it'll turn out all my cells from the ACT needed was one the last little *oomph* to clear these things out. Gosh that would be nice... We'll see, I'll keep you updated as I'm updated.

Thanks for the continuing concern and support.
I'll talk to you soon.

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mommydog's picture
Replies 3
Last reply 12/10/2011 - 7:03pm
Replies by: Richard_K, ipi in DC

My husband has been in the GSK BRAF/MEK randomized trial for 9 months now.  His last PET scan showed no evidence of disease.  I know that BRAF is not a permanent solution, but does anyone yet know about the long term prospects with the BRAF/MEK combo?  According to the oncologist my husband and one other trial participant out of the 14 in this trial had the most dramatic responses to the drugs.

I am thrilled, but keep waiting for the other shoe to drop.


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Wetterhorn's picture
Replies 5
Last reply 12/10/2011 - 2:11pm

So, the last several months have been pretty crazy given the number of symptoms I've had post Yervoy treatment. Just a quick update here. For the past 2 months I have had a good amount of nausea and an overall feeling of lethargy. I finished 3 rounds of Yervoy in late August as the first symptoms began manifesting. The docs finally prescribed a brain MRI (2nd in 2 months) due to nausea, but it was clean. In celebration of this, I drank 2 beers the night before thanksgiving and woke in the middle of the night with pretty bad nausea. Thinking my liver met was getting quite a bit worse, my wife and I still decided to go our trip to Costa Rica for 11 days. For the most part, all was well, minus a bit of lethargy and mild nausea. I did avoid alcohol while I was down there. On Wednesday this week, had a CT scan, which was a 2 month follow up from last scan. Results yesterday were great as the lesion could not be found on the Liver. I am not ready to call myself NED, and those words were not used at all in my appt, but i'm pretty happy with the results.

Has anyone else had long lasting nausea after Yervoy? Just curious.



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remjgg38's picture
Replies 2
Last reply 12/9/2011 - 9:36pm
Replies by: Janner, lhaley

I was diagnosed in 1984 with a stage IV melanoma on my back and had it excised.  Then again in 1991 another showed up and I had it excised.  There were no other occurrences until April 2011 when I noticed a lump in my left armpit.  I realize that this is an incredibly long time for melanoma to remain dormant but my doctor said that it has been known to do this.  They did a biopsy on it and it was a stage 4 melanoma so they did surgery and removed most of the lymph nodes in that area.  Pet scans have shown that there are other spots in this area now and my doctor wants to put me on Zelboraf.  Has anyone else had anything like this, and I am wondering about the effectiveness of this new drug.  Thanks.

All things are possible for those that believe.

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KellieSue's picture
Replies 7
Last reply 12/9/2011 - 9:22pm

Hello all. Thank you very much for the advice earlier on my braun tumor. I am about 20 days out and feeling much better. I finished the brain radiation and weaning off of steroids. PET and MRI look good so for now we will continue on.
I am getting better everyday wirh my stroke. It's a conscious decision to pay attention to the right side even tho I can't feel it. I have great OT and PT making me stronger everyday.
I will be starting a clinical trial with Temodar starting next Monday. Now if we can just keep the brain clean we will be good. I'm feeling positive and hoping to get back to kicking cancers ass.
Thank you all for the thoughts.

Kellie(from Iowa) fighting my way back from a stroke. I will beat this. I will. Cancer can kiss my ass

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Nicky's picture
Replies 8
Last reply 12/9/2011 - 9:18pm

Hi everyone, it is so good to be posting another anniversary.

The people on this board have inspired me for many years and I thank everyone so much for the posts that have been an amazing support, mpip is a great community 

It has been my mission to raise awareness for melanoma through tv and radio supporting cancer research and my local hospital. I know that some of my friends here, neighbours, family and colleagues who have lost their battle with this disease no longer have a voice but I still do and I will continue to help beat this disease in anyway I can until my last breath!!! (hopefully when I'm an old lady).

Whatever you are going through personally here, keep fighting and never give up hope. 

LOL Nicky (my patnet is under Nicky)






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Pattie's picture
Replies 23
Last reply 12/9/2011 - 9:10pm

My 19 year old son, Michael, has Stage 4 M1c Melanoma as of his latest PET/CT Scan on 11/7/11, which showed that 2 tumors have grown in his spleen and 2 possible minute tumors near the original site of his right neck. He is currently a second year student at Cal Poly Pomona.

History: He was originally diagnosed with Melanoma in March 2011. Michael had two surgeries in April & June 2011, of which 15 lymph nodes had melanoma tumors up to 1.1 cm of the 65 lymph nodes removed, from his right neck. At this point, he had Stage 3C Melanoma. Michael started Sylatron, which is Pegylated Interferon, on July 24, 2011, which was approved by the FDA in March 2011. Michael choose not to do radiation. He completed 16 weeks of the Sylatron until it was determined that the Sylatron was not working and the Melanoma had metastasized. Michael’s oncologist, Dr. Gregory Daniels of UCSD Cancer Center, then had Michael’s tumor tested for the BRAF Gene Mutation Analysis (negative) and blood tested for the Human Leukocyte Antigen (HLA)-A2-peptide complexes (positive).

Since the HLA – A2 came back positive, it is a possibility that Michael could be put on one of the clinical trials for Adoptive T cell therapy. (Adoptive T cell therapy  - ACT - consists of isolating tumor reactive lymphocytes from a patient, growing and activating them in the laboratory, and infusing them back into the autologous patient). He is going to the National Cancer Institute to meet with them to determine his next treatment option after he finishes this quarter in 2 weeks. Michael will not return to school this next quarter knowing it is imperative to start a new treatment as soon as possible.

Up until now, he has modified his diet to consuming more whole foods but not to the extent of my liking. When he was home for the summer, we were able to keep an eye on his diet. But since he has been away at school, I know he has tried, but he has not always stuck with the plan.

I would like him to start an alkaline diet plan with daily juicing, additional natural supplements and incorporating integrative treatments such as mindfulness classes and acupuncture into his routine. We have tried to eliminate as many toxins from his daily life by using safer body and cleaning products. I feel that he may have additional exposure to toxins when he surfs. Michael has been surfing since he was 10 years old, and it is just as much a meditation activity as it is exercise for him. Therefore, I cannot take that away from him. So, any pointers to help eliminate/reduce toxins would be appreciated.

Thank you for taking the time to read Michael’s Melanoma story. I would deeply appreciate if you could let us know what your current or past Melanoma Plan is. By reading what others have done to make their Melanoma Plan successful, I am sure it will confirm in Michael’s mind that he should make those same changes. Take care.


Melanoma Mom

"Life's Perfect Moments Are Now" 

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Karolina's picture
Replies 10
Last reply 12/9/2011 - 7:59pm
Replies by: Janner, Karolina, lhaley

Sorry for asking, again, silly question, but due to the lack of clarity from the doctor, i am trying to find out as much information as possible from this forum. And as so far, I wasn’t disappointed. Thank you

Now I am trying to find out whether negative result of SNB means that this cancer COULD NOT spread elsewhere? Or, is it possible that SNB is negative but cells could spread somewhere in the body via different way? Bear in mind that I am still talking about Desmoplastic melanoma, which I understand may behave different to other melanomas…

I am a bit concerned as my friend had 3 operations already, at the moment she has an opened wound as the doctor wants to make sure that there are no more cancer cells after last (3rd operation).  However, I wonder whether this cancer could spread elsewhere if, in fact, it is on my friend’s skin for at least last 5 months! If SNB is negative, does it mean that the cancer CAN NOT spread elsewhere by other means? To date my friend had no other treatment done i.e. CT or blood test. Is it also a standard procedure and is not required?

Please advise

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laurieformike's picture
Replies 9
Last reply 12/9/2011 - 11:50am

Husband got bad news from the MRI, new mets. The Gamaknife was 4months ago, they want to do WBR starting next week. So afraid of out come, with the side effects and all. Was looking to see if anyone had experences with the WBR? Also was reading about somepeople on the Board here have had good results with Yevoy with brain mets, and would it be option since he has had to reduce dose on Zelboraf twice now? So need to be able to discuss with someone, he is so depresed now. He was feeling so much better after reducing the dose on the Zelboraf but still having bad joint pain!

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Donna1963's picture
Replies 4
Last reply 12/9/2011 - 3:28am

Hello, my name is Donna.  The personal stories here are heartbreaking. My heart goes out to all of you. My mom has a large spot on her cheek. She went to a Dermatologist and she said that it was Melanoma and did a biopsy. It was so difficult to watch her in so much pain. The doctor said she had the bad kind of skin cancer and that they need to find out if it has spread to her lymph nodes or anywhere else in her body. I'm sure that a Dermatologist knows what it looks like but could she be wrong? My mom has had this spot for at least a year but it wasn't that big and has grown quite a bit. Her twin sister had skin cancer as well as her other two sisters. All three of them said it wasn't Melanoma. Can this type of cancer be hereditary?  





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