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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Donna M.'s picture
Replies 4
Last reply 10/6/2011 - 8:25pm

Is anyone going to the symposium on Saturday?

Peace. It does not mean to be in a place where there is no noise, trouble, or hard work. It means to be in the midst of those things and still be calm in your heart. (Unknown)

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Anonymous's picture
Replies 7
Last reply 10/6/2011 - 6:25pm

every time my husband gets a mole cut off the waiting game ages me years. i dont understand how some people dont find out for 2 weeks - that just seems insane to me. what seems to be typical - 1 week? 1 day? does it just depend on how many other moles the pathologist has to review?

thanks!

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

Hello,
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.

-Kevin

 

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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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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dearfoam's picture
Replies 1
Last reply 10/6/2011 - 4:44pm
Replies by: justlittleoleme

Had to take dad in to the neuro unit at our hospital yesterday. his slow, slow, slow taper off of the low dose dexamethasone from 2 mg, to 2 and 1 mg every other day, to 1 mg/ day over several weeks appears to have resulted in some bonus brain edema around one of his larger brain tumors. His Radio Onc who usually looks at this was out of town, and so was the Neurosurgeon who we have seen once recently (about an upcoming crainial needle biopsy to determine BRAF status), so the report got jumbled like in that game "telephone."

So anyway, I had initially called his medical onco's nurse to report the increased confusion/ less stable walking/ nearly falling several times. That had mostly happened on Monday evening (though later he told me and the nurse it had happened Saturday, which was news to me). Was a lot better balance wise Tuesday AM, but not back to his baseline and still confusing some little things. Not enough to be alarming, but I thought I should report it since we had to swap his quap can for the old walker.

By the time the triage report got from hematology to radiology to neurology, etc, apparently the story got exaggerated. The nurse called and said, go straight to admissions, we need to do an MRI and skip the ER, the dr subbing for your nero will meet you there. Go now. The nurse on the phone was so sweet, but I was caught off guard and didn't ask wy we were admitting him if he just needs to do an MRI and get back up on the steroid - I mean, I understood they probably want to observe him if the suspect bleeding or other sweeling issues in the brain. So I got him settled into the room, etc, the on call dr makes his orders, and then the admitting neuro's resident dr comes in and says, well, you don't look as bad as the picture painted for us. Come to find out, they heard he'd gotten completely immobile, in a wheelchair, and whatnot. He still needed to been seen and everything, and get the tests done to rule out some other possibilities, but it was kinda weird feeling like oh, he's not as bad as they thought, but its not my fault... He did spend the night and get the MRI done, which did show slightly increased size of one tumor in the left temporal area, and swelling there.

I guess dad will be on dexamethasone the rest of his life... it's already been since April!!!

Just wanted to recount the story. I'm glad everythign was managable, but boy I am exhausted after all the running around over town, worrying, trying to get the accurate story to drs, waiting hours for discharge... and of course I got the usual all day tension headache that comes FREE with every hospital visit we make!!! On top of that, I got to remind dad, whoc is still confused just on certain details, why we are there and to stop calling the family to tell them made up stories about what we are there for, like brain surgery. (?!?)

SIncerely Exhausted,

DF

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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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TracyLee's picture
Replies 2
Last reply 10/6/2011 - 2:32pm
Replies by: mombase, NYKaren

Hi y'all,

I've been discharged by U of Penn, and will contine on BRAF while being followed by my local oncologist.

I continue to respond well to BRAF, with some side effects: arthritis in my hands/elbows (fleeting); erythema nodosum (VERY PAINFUL) little red lumps = look like mosquito bites; dry skin; extreme sun sensitivity.

I find I don't need to shave my legs, at all! There's always a silver lining, and the hair loss seems to be on my legs, mainly! I do seem to lose more hair on my head, but not causing patches, etc.

Question re: erythema nodosum   bumps...mine is like a random game. I've gotten them on my arms, and all over my legs and feet. Each day is a surprise: where is one popping up today?! I've had several flairs on my feet, and man does it make it hard to walk. BUT it resolves in a few days.

Anyone else had these, and have any treatment ideas? I'd posted previously, and was told to take Aleve. This does help, to a certain point.

I'm just happy to wake up each day and assess how I am doing before I head off to life: work/kids/house/church. It's all good, and kind of an adventure! "Wonder where/when the next one will be?"

Praying for everyone on this board, we're in it to win it!

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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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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Anonymous's picture
Anonymous
Replies 7
Last reply 10/6/2011 - 10:05am

Hi

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?

Ann

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petie540's picture
Replies 9
Last reply 10/6/2011 - 9:52am

I'm in a clinical trial taking ipi at 10mg.  plus GSM 250 14 out of 21 days. Finished 4th infusion two weeks ago, scan yesterday. Results showed over a 60% reduction in the lung mets, now nothing over 3mm. No spread any where else. My doctor was thrilled saying how unusual it is to show this kind of response on the first scan/mri. It's been quite a roller coaster with good and bad scans, but this feels like it could be really good. Very bad rash from ipi, taking prednisone 10-20mg for months,but of couse I'll take it. My adrenals are enlarged but she is unconcerned saying it reveal the intensity of my immune response. Next scan in December with ipi maintenance also in december.

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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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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 so...do the GI effects improve with time on the drug?

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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 emotionally...no crying fits..at 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 with...no 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!

Jacki

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Lauri England's picture
Replies 7
Last reply 10/5/2011 - 6:18pm

I finally had my 1st set of CT scans yesterday after interferon treatments a year later.  I have an appt with Onc on Oct 20th.  The lady that did the CT scan said the results would be back to my doctor in 3 to 5 days.  I am really hopping I can get my results before the 20th.  I will be calling Friday to try to get them.  I cant imagine them making me wait that long with the anxiety I feel over this.  I know this is a normal feeling and almost everyone goes through it.  It does not make it easier though.  I just want to know that the Melanoma is gone for now if not forever.  If it is not gone I want to move forward with treatments.  As for now I am feeling really good, 3 weeks off interferon.  Appitite has returned and very little fatigue.  No more feeling like total crap.  Now just waiting for my hair to return as it is very thin right now.  I will post with results.

 

Lauri England Stage 3C

Don't sweat the small stuff. There are bigger fish to fry!

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