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 7
Last reply 10/6/2011 - 10:05am


I  am a newbie & need some help.

I had my 3rd surgery on my inner thigh in June.The surgeon cut down to the muscle to get the tumor and also took out surrounding lymph channels. Also, the  other surgeries on my inner thigh took out  lymph nodes.

Long story short, my upper leg from my knee to the top of my thigh is numb.  I have continuous lynphedema in my thigh.

It has been 4 months since my surgery and I have seen no improvement. I have NOT had a LND but my inner thigh is missing lymph nodes. Could these missing lymph nodes in my inner thighs be causing  my lymphedema.  I am very active, yet the lymhedema does not go away even after sleeping all night, I still wake up with lymphema and swollen thigh..

My surgeon basically tells me that is what happens with inner thigh  surgery.

I would appreciate it if I could see a doctor who could evaluate my leg, and perhaps make a recommendation how I can improve the function of my leg. I guess the nerve damage is causing the numbness. Will the numbness go away & the nerves come back? Without lymph nodes in my inner thigh, perhaps the fluid has no where to go.

Any suggestions, on what type of doctor/specialist I should see for my leg. My surgeon really does not care & I am very frustrated. I just want someone to evaluate my leg & tell me what is going on, and if possible, what I can do to improve my upper leg.

Any feedback//suggestions is sincerely appreciated. What kind of doctor specializes in leg?


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Lisa13's picture
Replies 4
Last reply 10/6/2011 - 12:16pm
Replies by: Lisa13, NYKaren, Tim--MRF, Jim M.

Next week is my final infusion of ipi before scans. I'm getting nervous now and hoping that those scans are going to prove nothing but success.  I had 2 ladybugs land on me today, so hopefully this brings good luck :)

I've been relatively symptom free throughout this treatment, other than itchy skin and some cramping. Today I noticed a slightly tender to the touch lower left side (around my intestinal/bowel area). I also have cramping that feels like pockets of gas surounding this area. I'm calling the clinical nurse tomorrow just in case it's an inflammation of my intestines, which happens to be a potential problem while on yervoy.  Has anyone experienced something like this while on Yervoy? I think the medical term is diverticulitis (inflammation of intestines).  

Lisa - Stage 4

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

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Jim M.'s picture
Replies 4
Last reply 10/6/2011 - 6:31am
Replies by: Jim M., MaryD, JerryfromFauq

Hi everyone,

 For the past almost 3 years I've had lymphedema in my right arm. I began to favor my left arm by carrying more things consistently on that side while giving my right arm a rest. We helped move our children from one place to another ( both are in college!). I know there have been times I've carried too much with my left arm. I've also done some exercises with 5 lb. weights.

 I had an MRI on my left shoulder. That's when I lost the range of motion due to cellulitis. The MRI revealed 2 small tears in the tendons in different areas of the shoulder. My doc. said that it happened over years. I believe my actions over the last 3 years at least accelerated the damage to the area.

 I began to take a supplement called Collagen 1&3 which is supposed to support tendons and ligaments, among other things.

 I'm not posing a question here, rather just advice for those in similar situations. Don't overuse your unaffected arm!

 God Bless,

 Jim M.

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Jim M.'s picture
Replies 6
Last reply 5/2/2012 - 1:44pm

Hi everyone,

 I had this twice in the last 6 months. It's a bacterial skin infection (deeper layers of the skin). The first time I had it I had a fairly high temperature and had little energy to get out of bed. I wound up in icu for several hours because my blood pressure was low (80s/40s). The infection was in my right (lymphedema) arm. It was red and hot to the touch. It was also moving up the arm. I was put on iv antibiotics. After several days in the hospital I was sent home with strong oral antibiotics. That did the trick.

 About a month ago I lost most of the range of motion in my left arm. I developed a low grade fever and saw a little red splotch on my left arm. Again it was diagnosed as cellulitis. It did spread to my armpit and a couple spots on my chest. This time I wasn't admitted to the hospital. I was given 1 dose of iv antibiotics in outpatient and prescribed oral antibiotics. My range of motion returned.

 I'm describing my experiences to see if others have dealt with cellulitis. For those who have had it, what advice do you have for preventing it (besides hand washing and trying to avoid scrapes, open wounds and bug bites)? I'm probably more susceptible to cellulitis since I'm taking Hydrocortisone which can weaken the immune system. My doctor would argue that it doesn't since I'm only taking the normal hormone replacement amount.

 Any advice would be appreciated.

 God Bless to all,

 Jim M.

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lunasea's picture
Replies 6
Last reply 10/5/2011 - 11:45pm

I'm brand new to this forum... was just diagnosed with a malignant melanoma in situ this morning.  My dermatologist is ready to do surgery next week, to excise a wider area of skin where the mole was.  However, oddly enough, I had surgery a year and a half ago for a different type of cancer, and that surgeon also specializes in melanoma.  Would it be better to have my dermatologist do this minor surgery, or to go back to my previous surgeon?  Does it matter?  I'm guessing that because it's only "in situ" (thank god for that), that it would be okay to just have my dermatologist do it... just looking for any opinions or info you might have.  It's really weird to me to now have to start Googling and gathering info about THIS type of cancer, after I've been so immersed in forums for my OTHER type of cancer... life is so strange.

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jax2007gxp's picture
Replies 16
Last reply 10/5/2011 - 11:29pm

Hello again,

Saw the doc today...everything is progressing nicely.  I still have the one drain, but I'm not terribly worried about it at the moment.  I think for the first time, I am finally starting to understand, or maybe be willing to face, the actual severity (read: mortality) of my situation.  I have told myself time and again...don't worry, you'll be fine, it could be so much worse.  But the fact is, at IIIc I am not really "fine".  I finally asked the doc about survival rates in my situation...something I've frankly been avoiding.  I really didn't like his answer...50/50 for 5 years.  This just seems like a low number especially in light of other data I've reviewed in the last 24 hours.

So...I've been searching for clinical trials that might give me a shot at trying Yervoy instead of interferon.  Since my mel was resected, the options are more than thin....they are almost non-existent.  Most trials for stage 3 require the tumor(s) to be unresectable.  But, I did find one which is being conducted in many hospitals nationally which compares Yervoy to interferon for stage IIIb, IIIc and some IV patients.  Other than one piece of the qualifying puzzle, I seem to fit the requirements.  The info states that a patient can still be qualified with disease recurrence after excision of original primary if the recurrence is in a regional lymph node basin and the disease was completely surgically resected with free margins.  How can an LND have free margins?  It's a mass of goo, right?

It doesn't look like I have a lot of options...for now.  And even if I can qualify for this study, it's still not a guarantee of receiving Yervoy since half the patients will get the high dose interferon.  But, I figure I would at least have a shot.  I'll be calling them tomorrow to see what I can learn.  In the meantime, I'm not expecting to get a lot of sleep tonight.  But, who knows, it's been a tough day for me mentally and crying least not yet (lol) but it has been a bit exhausting.

Sorry for the length of this...I'm not quite ready to lay this out for those closest to me yet and you guys are the best sounding boards out there.  I need to figure it out first...or at least wrap my head around it a little more.  One more thing I had to come to terms kids for me.  I was still hoping, but he made it pretty clear today that it is an unnecessary risk to myself and the unborn child...even after treatment ends, due to high risk of recurrence.  Like I said...big day for me.

Much love and many prayers for everyone!


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Jessmoon's picture
Replies 8
Last reply 7/5/2013 - 3:10pm

My husband and I just got back from visiting Mayo Clinic for a second opinion regarding his stage IV melanoma that was diagnosed last month.  Our oncologist in Des Moines (along with a melanoma specialist at the University of Iowa), has recommended, he enroll in the ECOG study where he would either receive Interferon or Yervoy. 

Today, Dr. Markovic at Mayo Clinic, has recommended a different treatment, Leukin.  He would inject this daily for 14 days and then be off the medication for 14 days.  This would continue for 3 years.  He does not prescribe Interferon because it does not increase survival time and has many side effects. He is also concerned about Yervoy, because studies have shown that 5% of patients died during the research studies while taking the medication.  He has been using Leukin for over 10 years and has seen good results, plus he reports minimal side effects. 

Has anyone been on this medication? Any suggestions?

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himynameiskevin's picture
Replies 11
Last reply 10/6/2011 - 4:51pm

A quick update from my room at the NIH...
Well in the beginning stereotactic radiation got rid of a small brain lesion, IL-2 cleared up my liver. And surgery got the mass off my back. Then with numerous lesions still in my lungs, I was accepted to the NIH last year and in December I participated in the "Adoptive Cell Therapy" protocol. Initially I had a good response, I think as a whole things went down around 20% over the first few months. As time went by, monthly scans showed the shrinkage was slowing down. And in late August, one had appeared to be growing again. But just one, the rest are still stable. So I was told to come back this week, with the Doctors intentions of a small surgery to remove the defiant one, and hope the rest continue to remain stable. But it turns out the tumor is not in an easily accessible spot as they thought so that idea was scratched and about 5 other options were discussed. It came down to the doctors suggesting I go back to San Diego for some systemic therapy. They suggested Ipilimumab. They said my immune system is still strong and smart enough to keep these things at bay, and hope the ipi will give them a little push to make a difference. 

So my time here at the NIH is over for now. Officially signing the papers and checking out. A sad day indeed. I fly out tomorrow morning. And even though this one is getting bigger and I wasn't one of the lucky complete responders. I don't regret coming here at all.  They did their best and I'm in better condition than I was a year ago today. Deciding to come here has to be one of the best decisions I've ever made and feel very lucky to have a doctor who encouraged and help get me in. I recommend this place to anyone who has the opportunity. 

So as of now, I have an appointment to see my oncologist in San Diego next Thursday. I'm sure he'll have some input, so I'm not sure if Ipilimumab will be the final decision. But it seems to be leaning that way right now.

Has anyone on here had a good response to ipi they'd like to share, whether short term or long term? It's a bit scary going into something new, and sometimes internet statistics can be misleading and discouraging. Hearing a success story or two can make a 1% chance feel like a 100% chance so I'm interested to hear.

Thanks, I hope everyone's doing well and I'll talk to you soon.



And now to one last night in my home away from home. I'm gonna miss this place, and all the staff that took care of me like family and not just a patient.

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mombase's picture
Replies 7
Last reply 10/6/2011 - 3:50pm

I met with my oncolologist today which is the one week after first Yervoy infusion point. I was so happy to say that I had very minimal side effects and he basically said, "hold on, Bucko". He reminded me that it takes at least a week for the Yervoy to ramp up the immune system responses and THEN the side effects would happen. Oh, shoot.

He did say that the side effects still could be light. He also said that he talked to a doctor at Bristol Meyer Squibb who said that imodium-d is the first line medicine in response to diahrrea. If after 8 doses of imodium the diahrrea does not go away, then endocort would be prescribed immediately to avert colitis.

Next appointment is 2nd infusion on the 17th!

Cristy, Stage IV

Getter done!

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Replies by: Anonymous, jim Breitfeller, momof2kids

I am suppose to have Yervoy soon , Ipi, and I keep hearing about this trial called PD-1 or PDL-1. I've had quite a Few
People from the bulletin board tell me to hold off on Ipi and try to get into this other trial. So now I'm totally confused. Can anyone share their knowledge on this and if you are in
The trial and what the side effects are like. Sometimes it's more stressful trying to figure out what treatment to do than having cancer itself. Everyone wants to tell you what to do and where to go.

Becky Stage IV

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Shimian's picture
Replies 6
Last reply 10/7/2011 - 4:07am
Replies by: Bosandi, cwu, Shimian, ccbreeding

My father had wide excision (without graft) of a new melanoma spot on his left foot sole two weeks ago. But the biopsy shows melanoma cells on the margin. We are sad and upset about this. The surgon said he would cut off bigger area and apply a synthetic skin graft at a interim basis and wait for pathology confirming clean margin before putting a permant skin graft into place, which means that my poor dad will have to go through another 2 rounds of surgery.

The surgon was reluctant to cut off bigger area in the first surgery two weeks ago as he was concerned of using skin graft on weight bearing foot sole. 

Can anyone who went through skin graft on foot sole or other weight bearing spot before share with us the experience? How will skin graft affect walking in the future? Is it necessary to have interim synthetic skin graft? Does skin graft on foot sole require better skills/experiences from surgon? What questions shall we ask to ensure we have the right surgon and right plan down the road?



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ccbreeding's picture
Replies 3
Last reply 10/5/2011 - 6:05pm

Has anyone ever heard of melanoma spreading to the cervix? Would it show up "black"? I just had two spots biopsied after an abnormal pap smear. It's probably nothing to worry about. I was just curious...don't melanoma cells always look dark (ie lung mets etc)
Thanks for any input.

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Lisa...His Wife's picture
Replies 19
Last reply 10/7/2011 - 10:25pm

I have to look at it that way...that every morning is...a good morning.

I just tried to set up a profile page...having registered just this morning.  When my husband was first diagnosed with melanoma I found this site but I did not bookmark it...luckily I stumbled back in here somehow this morning!

In that short time...since May of just this already seems like a liftetime...we have traveled far...and quickly too...on this journey.

I'm not fond of the term Caregiver... me it's way more than that.  I am Lisa...His Wife.

I tend to ramble.  I ask too many questions.  I am concerned.  I am afraid. the same time...I listen.  I am compassionate.  I am strong.

Our journey is...for the most fast as it is the beginning stages I guess.  I hope to find guidance...or maybe just acceptance...along with much this group.

I am honored to be here...and with much respect

Lisa...His Wife

Cherish The Moment

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PhoenixJ's picture
Replies 12
Last reply 10/6/2011 - 12:42am

Hi all,
I am new to mpip and I wanted to introduce myself and find out if there were any other massachusetts folks on here as I am the only melanoma patient that I know.
I am a 31 year old woman who works in the healthcare field (which makes this all the more interesting as I feel like I know too much sometimes).

I was diagnosed with stage 4 melanoma in august of this past year. I had a rather unusual presentation as I had no known primary. I was found to have large tumors in my kidneys which were found after an ultrasound I had to evaluate nausea and abdominal pain. Originally the presumed diagnosis was renal cell carcinoma, but after further testing it proved to be metastatic melanoma. For now I have mets in my kidneys (largest is 8.5 cm...yikes!) brain (4mm), and subcutaneous mets in my abdomen (1-2 cm). Finally after all of the testing which lasted over a month I started on vemurafenib. I have been on it for 2 wks now. I will be going for stereotatic radio surgery on oct 28 th for the brain met.

I pretty much have had an almost immediate improvement in my generalized fatigue and nausea. But I still have some decreased appetite. Plus i am starting to notice some hair loss (with showering and styling hair), which i thought wasnt really supposed to happen with zelboraf...but apparently alopecia is a side effect listed in the prescribing reference. I also have been having some GI effects since starting the med. From what I gather I will continue on vemurafenib until it looks as if it is no longer working with the hope that my kidney mets will shrink down some before switching to an immune therapy like ipilimumab or IL-2.

Does anyone else on zelboraf have similar effects (hair loss, lower GI effects like diarrhea and excessive gas)? If the GI effects improve with time on the drug?

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Bonnie Lea's picture
Replies 3
Last reply 10/7/2011 - 4:04pm
Replies by: Anonymous, bcl, JerryfromFauq

Should prob post this on the other board but it happened here.  A old post of BCL telling us the passing of Cass was brought up front (I got the thing to my home)  from Feb from one of those 'bot'  anonymous told me about the other day.  Relieved all those feelings and seeing a dear friends name (who has since passed)  can't they be stopped?  Is it someone out to get us?  why pick such type of posting?

Bonnie Lea

Just Keep on Hanging In

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