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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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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bcl's picture
Replies 31
Last reply 10/4/2011 - 3:19pm

don't be offended folks, Nic never liked a fuss, and previously said when she passed away she wanted us to simply say she karked it. ( She wanted us to add a smiley face there, but I just can't.)

Sadly today, after years of defying the odds, our feisty beautiful and brilliant friend passed away.  As she was setting off home from the hospital last week, her final instructions to us on her blog were  Hooray!! Behave, if you can :) 

RIP Nic love -  I will never forget you, and will forever be grateful to you for being my friend.    linda

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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

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Hi everyone,

Looks like some good news on this board right now which is great!  Seems like lots of people doing different variations of treatments.

 I just got my scan results from being on vemurafenib for 2 months.  50% reduction of tumors in lung, liver and bone!!  I had figured as much as I almost immediately felt soo much better!!.  We talked to our oncologist about switching to ipi once we got tumors either gone or  small enough size that we could switch over.  Original plan was wait until we saw signs that vemurafenib wasnt working anymore then switch, but now that clinical trial does not have control my husband and I are hopeful there is more freedom with the drug.    My hope was that we could switch to ipi or PD-1  while I was healthiest and then if that  didnt work for me go back on vemurabneib if needed. 

But for now oncologist wants us to be happy with results and not rush. My cancer has become agressive and he worries about jumping off drug too soon which might give current tumors or new tumors chance to grow before ippi or pd-1 had chance to work.  So for now I will be happy with my results and hopeful for the future :)

Any thoughts on this "plan" are welcome.  Also congrats to all who are responding so well to their treatments, you are all in my prayers.

laurie from maine

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carol b's picture
Replies 8
Last reply 10/4/2011 - 3:40am

well, my tumor HAD shrunk enough to do surgery but once again they keep putting off my appointments, I called and told the it was growing back fast on July 5 , But since then it has gotten as big if not bigger than the last time, Each time it grows back it grows faster. Now i have little pimple like things growing on the outside of the skin,, there is 6 of them, i figure they are small tumors because they are growing too. The redness is growing back to,, i was told that is tissue death, Its all the way up my shoulder now, which was never there before, I have it all in my boob and it is swelled to the max and the nipple is turning yellow. Its also spread across my chest, it always stopped right in the center of my chest but this time its spread to half of my other boob,,,i got to  go to vandy Monday to see the surgeon , i pray they just jump in and take out this monster before it kills me but they seem to be taking their sweet time. guess thats my update,, no good news to tell about but i wish i did,, i will comment when i get back from seeing the surgeon Monday to let yall know what he said,, praying for you all always.

Carol B

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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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

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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.

 

 

 

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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! 

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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?

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