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.

Expand/ Collapse Topic
 
Replies By
View Topic
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?

Login or register to post replies.

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

Login or register to post replies.

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!

Login or register to post replies.

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.

 

 

Login or register to post replies.

dutchhook's picture
Replies 3
Last reply 10/4/2011 - 1:05am
Replies by: dearfoam, kylez, Charlie S

This bulletin board has been great. We've posted some miraculous results from the B-Raf medicine, Zelboraf, which shrunk all of my wife's tumors by 90% within two months. We've read some awesome stories too. We;ve tried to only post answers and contribute, but now we could really use some perspective.

Now, the melanoma is growing rapidly. Something we were kind of expecting once the B Raf was no longer effective.

My wife has numerous spots in the brain, the femur and hips. There were 4 brain tumors, with the largest being 1.1 centimeters.

: About 10 days ago, she started  complaining of not being able to concentrate and everything was taking twice as long. She then went into surgery to have a rod put into her femur because of an impending break. When she came out, she was disoriented, and had difficulty speaking. I have had to tell her three different times about the surgery on her leg, because she completely forgot what was done. The doctors said she could go into hospice or into whole brain radiation, with the whole brain radiation giving her a 50/50 chance of living a year. She's a fighter, so she chose to do whatever she can do to fight this horrible disease.I've also had to re-explain this situation two more times. It was bad enough the first time.

The doctors assured me the disorientation was the Oxy, but she's been on the same or higher dose of Oxy for 6-7 months and has functioned fine. I told them over and over that it wasn't the pain meds. She just started whole brain radtation a week ago. We finally got the doctor to raise the dose of Decadron from 2 milligrams to 12 milligrams per day, and that helped a lot for a few days. Now she's back in the soup. I got home from work today and she can't answer any questions but yes or no and can't complete an entire sentence. She can't function, and when I ask odd questions like "Are you green today?" or "What did you think of the snow outside today?" she answers with yes, or a gentle nod.She has this blank stare, so it's really scary.

My daughter is considering moving her wedding from January 7th 2012 to 3 weeks from Saturday because she just wants her mom to be there.

My question is this. Could this be from the brain swelling? Is this a symptom of the tumors affecting her thinking? Can whole brain radiation cause this within a day or two? Does anyone think the disease is progressing rapidly? I called the surgeon again tonight and he just said it was from the swelling and increased the decadron from 12 mg to 16 mg per day.

 

 

 

Login or register to post replies.

jaredmiller16's picture
Replies 3
Last reply 10/3/2011 - 10:37pm
Replies by: Anonymous, jaredmiller16, lhaley

Just saw this on the news. Has any of your derms talked about it? www.melasciences.com

I thought this was a dream come true! Especially for those with several atypical moles, such as myself. In fact, I can count on one hand the number of normal moles I have. My body is covered with weird looking moles. I sometimes feel like an idiot when I go to the derm because I stress and sweat about a new change in a mole, but it always turns out to be fine (except for the one HE found and it was a newer mole).  My moles are notorious for change, but its never anything like shape, size, border...Etc, However, I think this tool would give me more of a peace of mind.

Funny thing is,  I talked to my derm about it and he was not a huge fan! Do you think its because it will cut the $$ with the amount of his biopsy's. He created a little program of his own that does serial screening for patients like myself with high risk factors. His office basically hounds me every six months to come in for a screening. At first, I was kinda annoyed, but he then told me they have not lost a patient who participates in the screening for 15 years! All the melanomas they have caught were in their early stages. After what happened to my mom, I stopped getting annoyed.

But, I was kinda bothered that he would never consider such a great device! This could catch more Melanomas In Stiu...

What do you think?

Login or register to post replies.

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

Login or register to post replies.

AlanM's picture
Replies 9
Last reply 10/4/2011 - 12:11pm
Replies by: mombase, Lisa13, lhaley, AlanM

I was scheduled to have my 3rd infusion of Yervoy this past Wednesday. Instead on was on an escalating dose of prednisone due to colitus symptoms. By Friday they were full blown and I was admitted to the hospital for an infusion of Remicade and fluids. The Remicade has stopped the bleeding and drastically reduced the frequency so at this point hoping to back off on the 100mg that I am taking daily. I am sure there are others here that have experienced colitus from  Yervoy. How long has it taken to get things back under control?

I was only able to work one day last week and today I am just exhausted from the weekend in the hospital, all the predisone, etc. This is really starting to affect my sleep and ability to focus. Any helpful hints from somebody who has "been there" would be helpful. 

Alan

Login or register to post replies.

beccia1's picture
Replies 5
Last reply 10/4/2011 - 2:40am

my orginal melanoma came back after 41/2 years, i also have myeloma at the present time.

 

i am waiting the results of my genetic testing, but the braf test was negative.

 

waiting results next week of the c-kit test.

 

my oncologist at mass general said because of melanoma and the myeloma if both test are negative 

there is not much he can offer me.

 

i was wondering if  anybody would have recommendations.

 

beccia1

Login or register to post replies.

FREE SKIN SCREENING in Nashville, TN

Saturday, October 8, 8am, at Church of the Living Word, 51st and Wyoming Ave in Sylvan Park near McCabe Golf Course at the Music City Miles for Melanoma 5k. Get checked by a local dermatologist. For Free!

No insurance is necessary. Registration for the run/walk event is NOT required. First come, first served until 11am.

5100 Wyoming Ave, Nashville, TN 37209.

Login or register to post replies.

JerryfromFauq's picture
Replies 2
Last reply 10/3/2011 - 3:44pm
Replies by: ValinMtl, Hawaii Bob

http://www.sciencedaily.com/releases/2011/07/110720142513.htm

Breakthrough in Melanoma Research: Protein Suppresses Progression of Melanoma

ScienceDaily (Dec. 23, 2010) — In a breakthrough that could lead to new treatments for patients with malignant melanoma, researchers from Mount Sinai School of Medicine have discovered that a particular protein suppresses the progression of melanoma through regulation of an oncogene, or gene responsible for cancer growth.

***************

"Researchers then manipulated macroH2A levels in melanoma and found that when they removed it in the early stages of the disease, the melanoma progressed more aggressively both in growth and metastasis. Adding macroH2A to late-stage aggressive melanoma cells created the opposite effect."

I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

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

Login or register to post replies.

glewis923's picture
Replies 4
Last reply 10/3/2011 - 12:07pm

Dear ALL fellow Met-mel fighters:  Just had MRI /CT scans:  very grateful about results:  

1)  No spread to other organs.  

2) Lung numerous tumors have shrunk dramatically or are gone.  A couple just stable but small.  Big medial hilar region that poped up also regressed.

3) Multiple brain tumors have mostly shrunk (regressed) or just stable.  Some or most could be just plain old dead! I hope.

4) Been on Zelboraf for almost 5 weeks......developed some "sores" that Mayo Dr. on Friday is convinced is Shingles!  I can deal with that, but strange.  Anyone else heard of such?

Background:  Since May 2009 several chemo & interferon.  Feb. had 7 brain tumors SRS zapped, and 10 days WBR.   Did regimine of Yervoy March thru May of 2011.  Started Zelboraf Aug. 19th? and still on it.  

I should have already been dead- Just very thankful that something- all of the above perhaps- has kept me mostly stable or regressed; but not naive enuff to think i'm anywhere close to being "Outta the woods"

 

Love ALL,  Grady.

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.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 10/2/2011 - 8:53pm
Replies by: Anonymous

Hi Becky,

Before you make a final decision on Yeroy, which could give you severe side effects, you might want to discuss PD1 & PDL-1 with your doctor.

It is a immunology treatment like yervoy with less side effects. So far, data as shown PD1 & PDL-1 drugs are more effective than Yervoy with very mild side effects if any.

Since you are at Angles Clinic, I heard that PD1 & PDL-1 clinical trials would be opening at Angeles Clinic soon.

I would definately ask you doctor about PD1 & PDL-1 before getting your insurance approval for Yervoy.

It would be greatly appreciated by all of us if you can CONFIRM  if PD1 & PDL-1 clinical trials will be opening soon at Angles Clinic. I think that all of us want to know where we could get a PD1 & Pdl-1 drug if needed.

Thanks & good luck with your decision for treatment

A.

Login or register to post replies.

nicole's picture
Replies 13
Last reply 10/3/2011 - 11:51pm

Hey everyone! some of you may remember me from years ago... my husband Sean passed away from melanoma in august, 2008...  Since then my life has been completely different! our daughters and i have had our good and bad days, but i think we are coping well...   Unfortunately though, the battle still continues for us! our youngest daughter ella seems to have been stricken with a very high risk for melanoma.. Not only has she lost her dad to melanoma, but by the age of 3, she had a spitz nevus removed and had to have surgery to have a descent sized dysplastic nevus removed... She is now 4 and has another 'spot' on her torso that measures 2.2cm by 9mm.. it is about a shade or 2 darker then her actual skin color and it has been there for about 2 months.. She sees a dermatologist regularly and i also took her in to her family doctor as soon as i realized this is a spot that is not going away! (at first i just thought it was a faded bruise). Her family doctor (who has actually been very wonderful with ella and has significantly helped keeping up with her skin checks) has recommended waiting and watching this spot and re-measuring on a monthly basis-her appt. with her derm is this coming wednesday. At first i agreed with watching it, but after thinking about it CONSTANTLY, i have come to the conclusion that i don't want to wait and watch it! I don't want to watch it grow and turn into something atypical! Yes, it looks harmless now, so why can't we remove it now before it does turn into something harmful?! I called her doctor back and let him know how i feel about the situation, but it is not as simple as just going to get a quick biopsy a the dr.s office-she will have to have a referral to her pediatric surgeon and they will have to put her out... so there are risks with that!  I have a feeling her dermatologist will say the same thing about watching and waiting. I guess this post is more of a venting post then a question!  Anyways... any suggestions for me? Any points that i should bring up with her derm to as WHY she should have this removed?! Anyone that has had any experience with pediatric melanoma-what did your childs melanoma look like?! I do know that a majority of childhood melanomas are not necessarily presented as a melanoma would during adulthood.. Does anyone agree or disagree that the risk is higher to leave it on her then the risks that may come by having it removed?! Any comments are appreciated! Thank you,

Nicole (Widow of Sean)

never, never, never give up! 

Login or register to post replies.

Pages