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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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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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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mygirlmaddy's picture
Replies 31
Last reply 10/5/2011 - 10:35am

Once again, we have gotten bad news.  Before we give up and agree to palliative care  (as our oncologist wants), I am turning to all of you for any suggestions.  After nine months of being stable, although not cancer free, my husband's cancer has begun to spread.  It is still not on any organs, but nearly all of the lymph node sites are involved.  He also had a tumor on his wrist that our doctors rushed to have removed as it was eating through his bone.  He has tried IL2, Ipi, is BRAF wildtype and steroid dependent (due to hypofecitis from Ipi use) and too sick to qualify for most clinical trials.  Radiation successfully reduced the size and pain of a few of his tumors, but it's not a cure and his doctor doesn't want to keep radiating him knowing that it won't truly fix the problem.  She wants him to start Temodar to possibly slow the progression.  He is nauseous and vomitting more than he is not.

I don't want him or anyone else, myself included, to feel that we didn't do everything we could.  If anyone has suggestions for something we didn't try, I'd love to hear it.  

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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momof2kids's picture
Replies 11
Last reply 10/4/2011 - 10:19pm

For all of you who are currently NED, you had tumors before, but they are 100% gone, or so small, they can't call them tumors, etc?  I see plenty of people posting lately who are NED, whether they are Stage 0 thru 4....and I just wonder how that can happen at Stage 4 (which is what I am).

I know trying to get rid of tumors in any part of your body is what we all want, to continue surviving and living on this beautiful earth, but I know how hard it is to end up NED I'm sure.

I'm currently going thru Yervoy (had 2nd injection last week), but I'm always thinking about the future, and just trying to find out if your tumors disappeared completely, or are so small they don't think they are a threat at the time and they should stay small for months or years upon end.

Just always trying to grab ahold of some hope here & there to keep myself going.

Just praying that the Yervoy will shrink my spots (none of this enlarging crap they mentioned that may happen).

Just want to keep living for me & my boys!

Sorry if I keep rambling, but just trying to figure out what exactly you all mean by NED, like they haven't noticed any tumors, like as if you were cancer free, etc.

I just keep having horrible thoughts about leaving my kids behind, I know I can die at anytime, if something were to grow , etc, but I just hear stories of living Stage IV for years, 10+ years, and I just don't know if I can believe it's true.

 

 

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jmmm's picture
Replies 2
Last reply 10/4/2011 - 5:32pm

Has anyone had a yervoy, or even through a trial (ipi) reiunduction?  My husband had a mixed response to Yervoy--2 solid tumors (one near his heart and one in his GI tract) completely disappeared, but 2 new ones have developed (before his 14 week scans) since then.  They are slowly growing.  We stumbled upon the fact that several people have had insurance cover Yervoy reinductions.  We are wondering how many doses anyone received.  I know that according to the website, they'll do a full 4 doses (assuming we can get insurance to cover it), but we know that some of the trials did doses less often.  We know that the cancer stopped growing and started shrinking sometime before his 2nd dose in the original reinduction--he stopped bleeding from the GI tumor) and are worried that a full 4 doses could be too much.  We were wondering about 1 dose every 2-3 months to simply keep the cancer at bay.  Any thoughts??  He's the only patient his doctor has on Yervoy.  We've consulted with a specialist a couple of times, but he says there's no "right" thing to do for the reinduction.  We were just curious as to what other people had done.  Thank you

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NYKaren's picture
Replies 5
Last reply 10/4/2011 - 4:06pm

Hi all,

Returned last (not this) past Saturday nite from second session of IL-2 at Yale.  It took about a week until I could function at all--it was correct that the second time is harder.

I didn't have many side effects the first time, just itching and a little diarhhea.

This time, the itch was there from day 1 (and hasn't stopped yet) the diahhrea accured much sooner.

I experienced much more confusion.  No appetite whatsoever.  Bringing protein drinks was a great idea.

And yet, Dr. Sznol said that very few peope finish all the bags.  Now he tells me--as if I had a choice!

Today was the first day I drove and tomorrow I'm going to attempt work.  Normally I'd wait till next Monday, but I want to make sure I have time left for the rest of the year.

 

I'm still using Aldera, and much of the area has scabbed over and fallen off.  Still pigment underneath--can't tell if they're flat or not.  Called Sznol's office; he said keep using it.

So, scans again in 7 weeks, then decide if we do this again

Thanks all for your support; I'll keep ya posted.

karen

 

 

Don't Stop Believing

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