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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glewis923's picture
Replies 9
Last reply 12/20/2011 - 11:19am
Replies by: martimus04, MariaH, Cate, Anonymous, WendyPam, lovingwifedeb, Fen, sharmon

As I look back over the year, I realize how fortunate I have been.  I also think of the many friends on this board who are no longer with us.  Let's take a moment to reflect on their lives.  I can think of a few right off hand, but please add to this remembrance list if you want.

Shelly from Switz., Amy Busby, Sharon from Reno, Eriic, Nicole NicOZ, Sharyn, and many others I cannot think of at moment.

They shall all be missed by many.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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kjkaralekas's picture
Replies 1
Last reply 12/18/2011 - 9:42pm
Replies by: Charlie S


Since I just joined this forum last week, I have already learned so much from all of you. You all are so informed that some of your posts sound like doctors. I was extremely impressed. I was given a book by my sister-in-law entitled The China Study. You might have already heard about this or read it. It's amazing. Basically it's a way of life--eating plant-based--that can ward off cancer. I also read Brian's link below. Took 90 minutes but totally worth it. (Thank you, Brian). Both these really changed my way of thinking about eating for the rest of my life. It makes so much sense. I think the reason why it's not blasted throughout the media is because the economy is already in turmoil. Can you imagine if we told the US that the way we are eating is literally causing cancer? Brian's link is a little more moderate, will allow for a couple of glasses of wine and a small portion of protein daily, than the one in the China Study. I,myself, would have a hard time not have a glass of wine here and there. :) I will start with the way the doctor in Brian's link talks about eating--basiclally a Mediterrean diet and try to move eventually into a plant-based diet.

Bottom line: cancer cells feed on sugar and cancer cells can't survive in an alkaline state so why not make our bodies in a state where cancer cells can't survive? To me, it's worth a try. Maybe if one of my melanoma cells did go astray and is in my body somewhere readying to manifest itself at some point, why not try and make it really hard for that cell to survive? Can only make me healthier anyway. I read a story from a gentlemen who was Stage III, ate this way, was NED for years, slipped back into the regular habits of eating thinking he was all set and became Stage IV. Could be a coincidence, but why tempt fate?

I urge you all to pick up the China Study and take the time to read Brian's link. What have we got to lose??

Again, thank you all for your comments to my original post. It really did open my eyes. I can only hope to become as informed as all of you.  


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Camp Host's picture
Replies 5
Last reply 12/18/2011 - 8:34am

 Would sure love to chat with others with like issues .....8 months post Isolated Hot Limb Perfusion for a melanoma on foot with a metastatic melanoma on shin.... now experiencing frozen knee joint Doc's are saying the Melphalan has dried up the cartilege .... total knee replacement  next... Wondering what others have experienced ... CAMP HOST Janet 

A strong spirit and positive attitude goes a long way....... "Everyday is different and Everyday is Better"

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newmanmark's picture
Replies 2
Last reply 12/17/2011 - 5:50am

I wanted to let everyone know that I will be 2 years NED next week (Dec 19th). There was a time that I thought my life was over. When I was initially diagnosed this board terrified me but many of the posts also gave me hope. I lived for posts from people who were NED. I want to share this same gift with others and provide some form of hope and support for the many who are struggling with a recent diagnosis. It was a very dark time for me but as time passes I am able to divert my focus from melanoma. I still think about it every day but the mental anguish and fear has definitely been reduced. While I was receiving treatment my wife was pregnant with our first child. I honestly thought that she would be my first and last and I wouldn't be able to see her grow up. Well, she's now almost 2 and we have another girl on the way. I try my best to continue living my life as I did before my diagnosis.

To all of you out there who are struggling, keep pushing forward and take one day at a time. Seek support in whatever form you need. For me, meeting with a psychologist regularly was better than any medicine.

Happy Holidays

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Angela C's picture
Replies 4
Last reply 12/17/2011 - 11:35pm
Replies by: kylez, Angela C, King

Hi there.

I currently have an adrenal gland tumor that is pressing on my liver. They do not see any mets in my liver, but the latest CT write up said that they cannot exclude invasion of the liver.

The only side effects I have noticed from the adrenal gland tumor has been some lower back aching on the side of the tumor and a sharp pain in the lower back on occasion. I was just wondering what others with adrenal gland tumors and liver mets have noticed as side effects?

I just had my first CT after Yervoy and the adrenal gland has continued to grow. I don't have anything new and the spots in my lungs are still stable. We don't know that what is in my lungs is even Melanoma. I've had two biopsies of areas on concern in the lungs before and they have not been Melanoma. But, the existing spots have never been biopsied and have been stable now for almost a year. But, the doctors still treat it like it's Melanoma, even though it could be nothing as the others were.

We are waiting to do another scan at the end of January before making a determination that Yervoy didn't work for me. I'm just wondering what I should keep an eye out for as an indicator that things could be progressing into the liver or the adrenal tumor could still be growing.



Be kind, for everyone is fighting a great battle. -Plato

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gabsound's picture
Replies 5
Last reply 12/20/2011 - 9:28pm


I finished up biochemo treatments the end of october. Unfortunately the lump at the bottom of my lymph node scar started to rapidly grow. PET/CT showed marked uptake in that region-rest of scan was clear as was brain MRI. Core biopsy of region conformed melanoma. My surgeon based on the biopsy results did agressive surgery, as if I had a sarcoma, and took large margins around this area. LARGE piece of tissue removed 20 x 10 x 5 cm on 11/25/11. Even took out some muscle.  Posterior margin is questionable as to whether it is clear. My oncologist is treating me like I am a stage 4 patient since metastatic disease has ocurred twice in the leg. Plan is to start Yervoy tomorrow and will meet with radiation oncologist fairly soon.

Im wondering about a connection between estrogen and melanoma. My Oncologist seems to think there isn't one however, my initial lesion changed after I was on hormones for a while and my most recent tumor seemed to change rapidly between biochemo treatment 3 and 4 when I started  using my hormone patch again. Could be coincidental, but I have asked the surgeon to have them test my tumor for estrogen sensitivity.

I'm recovering well from surgery and only took 1 week off from work. Incision seems to be healing well. I think I have some increase in lymphedema in the leg since the last surgery, but I will be getting a stronger pair of compression hose. I'm wondering how much worse my leg would get with radiation treatments.

I feel like this agressive surgery followed by the Yervoy and possible radiation is my best shot at hopefully stopping this. It's been just one thing after the next, this year. I already feel "cured" from the surgery. What a relief to not have a growing tumor in my leg. I really feel great right now and feel very positive. I'm hoping the Yervoy will be a piece of cake after doing high dose interferon and 4 inpatient biochemo treatments!

Happy holidays

Julie from Las Vegas

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AlisonC's picture
Replies 1
Last reply 12/15/2011 - 11:12pm
Replies by: lhaley

I was reading Lisa's post and wishing for the same for my friend David here in Singapore.  He is only 8 weeks post diagnosis of 3 brain mets (almost 3 years post stage IIIA) and he's having a really rough time.  He had a craniotomy for 2 tumours on Nov 1st and Gamma Knife on a 3rd a week or so later.  Since then he's had an awful time with bleeding, raised intracranial pressure and nausea/vomiting that have seen him re-admitted twice (and back at the hospital more than that).  It's brutal because I know he wants a great Christmas with his family and 3 young children. 

We have a satellite clinic of Johns Hopkins here in Singapore (which is where he's being treated) and he gets additional opinions from the Mayo Clinic.  Does anyone have any additional advice (even lifestyle, things to eat/drink that help) that might help him get through the pain and nausea ? and sleeplessness ?    They've done repeated scans and so far he remains NED (not counting the gamma knifed tumour which obviously is still visible) but he's just suffering such a lot.

Any advice appreciated and I'll pass it on....



NED since 2001

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JoshF's picture
Replies 5
Last reply 12/16/2011 - 6:45am

I had been dignosed with what my oncologist felt was primary dermal melanoma....meaning there was no leison on my epidermis. It is very rare and has typically a positive outcome. That happened in April/May...I had surgery to remove leison out of right cheek as well as sln biopsy which came negative. I went for my bi-monthly checks and all has been well. Had a CT Scan of Chest and Neck in November which came back NED. At a suggestion I went to see another Melanoma specialist a few weeks ago who suggested MRI of brain and CT Scan of Abdomen & Pelvis. Will have results on Dec 19th....Dr also said he might recommend Interferon Alpha 2 or an adjuvabt treatment for 1 yr. This is a little freaky...anyone tell me more about this? This is scary but I want to do all I can to prevent this from ever coming back.

Let's work for better treatments....for a cure!!!!

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Lisa13's picture
Replies 11
Last reply 12/19/2011 - 12:42pm

It's been almost a year since I was diagnosed with Stage 4. I had great success with ipi on my lung mets and while on ipi, developed 2 brain tumours which were gamma knifed 6 weeks ago.

Tomorrow, we're hosting a holiday open house, I've been dancing with my 2 year old, running around the house cleaning, preparing and decorating for the holidays, laughing and enjoying life like I don't have cancer.. It's hard to believe that I have Stage 4 as I've never had a symptom or side effect since being diagnosed.   I know we never know what lays ahead in our future, but I do know I can't let this melanoma run my life.  When my friends and family I havn't seen for awhile see me, they tell me I look unbelievably amazing. My hairdresser just told me my hair was as healthy as he's ever seen it!  Attitude means alot in this battle. I think of someone like Lance Armstrong who had lung and brain mets and is still hear 10 years later without the cancer returning. Yes, he had a different cancer - but he had an advanced state of cancer and 2 brain mets which he knew was a bad prognosis.   That guys attitude and willing to try and beat the odds is motivation for me.

I have scans at the end of January which I'll be nervous about, but I keep remaining positive that this could stay away for a long time.  As for brain mets, some people on ipi got them during treatment, but havn't had another one come back for at least a year.  This is what I hope for me as well. 

Happy Holidays everyone.   I hope the New Year is filled with hope, new treatments, better stats, and continued good news for those who are responding to ttheir reatment. 


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

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robbier's picture
Replies 11
Last reply 12/17/2011 - 3:14pm

Went to see my onogolist yesterday, still having issues with the recomendation of doing interferon alfa.  At the present time i am in remission according to the Doctor, there is no signs of cancer, so I having issues with doing something like interferon and the side effects.  So I amwaiting for the Dr. office to call me for my appointment with UAB (University of Birmingham).  This is just been a very hard decision.  Any suggestions from anyone would be appreciated at this time.  Thank You

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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deeczar's picture
Replies 4
Last reply 12/15/2011 - 9:34pm


Going to Md Anderson in a few weeks for isolated limb infusion..anyone  with experience with this? Any info helpful on what to expect ..Thanks Dee

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deeczar's picture
Replies 1
Last reply 12/16/2011 - 1:10pm
Replies by: Camp Host


Going to Md Anderson in a few weeks for isolated limb infusion..anyone  with experience with this? Any info helpful on what to expect ..Thanks Dee

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Sherb's picture
Replies 6
Last reply 12/20/2011 - 11:15am

Question for all of you...... My mom has stage 4 with tumors in her liver (5) and 1 (4cm) tumor in her messentary,and throughout lymph nodes . We are waiting for the results of BRAF. She has been having stomach pain each day, multiple times a day and then vomits every other day and then feels a bit better. Anyone have a guess as to what could cause this? This has been going on for 2 weeks. It is frustrating waiting for results. She has failed 10mg Ipi. Just waiting for results from BRAF so we can move forward and figure next step. Sorry for the rambling.

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fdess056's picture
Replies 3
Last reply 12/15/2011 - 12:49pm

Hi, all. I'm scheduled to start Yervoy after Christmas and would appreciate any advice or anyone wishing to share their experience with it.  I'm stage 4 BRAF positive with a 1.5 cm met on the tibia near the knee and a 2 cm met on the left lung.  Prior to this i was NED for 20 months  after surgery, radiation and interferon.   Thanks and Happy Holidays to all


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Anonymous's picture
Replies 0

Anyone has platelets fall as a result of Ipilimumab? If so, what was the treatment and was it long lasting?

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