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
Anonymous
Replies 1
Last reply 5/8/2012 - 5:35pm
Replies by: natasha

I have been a lurker here.  I am newly diagnosed with a stage 0 melanoma.  Is this considered a cancer?  I was given a information packet from National Cancer Institute today after my wider excising.  It says that, and I quote:: In stage 0 abnormal melanocytes are found in the epidermis.  These abnormal melanocytes may become cancer and spread into nearby normal tissue.  

DOES THIS MEAN THAT IT IS NOT CANCER?  WHY DOES IT SAY MAY BECOME CANCER?  I WAS TOLD IT WAS CANCER. 

Is this a big deal, something I should be telling my parents, or not worthy of the worry it may cause?

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Lisa13's picture
Replies 3
Last reply 5/9/2012 - 1:10am

2 weeks ago, I found out the brain met from last november was starting to grow, but they didn't know if was blood or met. So I decided to go to Florida and had a great time with my family. I also found out the brain hadn't grown for 13 days, so in 2 weeks, I'll know everything. This could be good things from ipi, which i'll find out everything on Friday.

I've never taken a steroid and still have high lymphocyte, so I don't want to effect the immune system. However, I'll have to take them as I'm experiencing things like a weak hand. I used to have other problems, but no longer have then. Does the steroid really make you feel better?

Lisa

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

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NYKaren's picture
Replies 5
Last reply 5/9/2012 - 5:10pm

Hi everyone,

I haven't been on here for a while...it feels good to post again.

Before my 3rd infusion on April 19, the only side effect I was having was some diarrhea, for which I was given Endocort EC, and I was actually kind of wishing for more (last time I had a bad rash too)...well be careful what you wish for!

A day or two after that, I developed diarrhea, really badly.  The Endocort was no longer controlling it, so Dr. W. put me on  Prednisone..  Of course I wasn't happy about that, but what the heck, we would just get me stable and taper me off.

Then the following week, I was having bad diarrhea again and I was doubled over in pain.  They had me go to the Urgent Care at Sloan (their version of  the ER).  Two doses of Dilaudid helped for about 15 min after each dose, although I had stopped going by then.  Dr. W. came and ordered a CT scan; he said that it looked better than he expected and dx'd mild colitis.  He did say, "Karen, we wanted an immune response, and you definately got one!" Then they pumped me full of more steroids, and blessed relief.  It was like magic.   

In the hospital he said he didn't know if I could get the 4th infusion, but since then I've been weaning off the pred., down to 40 mg/day with the intention of being off in a couple of weeks.  G-d willing, I'm scheduled for my 4th infusion on May 24th.  Even if I couldn't get it by then, it can be stretched out more, even more, apparently than the 16 weeks that is in the protocol.   I don't know how anyone willingly takes steroids.  I have big chills, neuropathy in my feet and horrible GERD.  My gastro prescribed Omeprazole, which did nothing, but Nexium is working well.  I think my case is somewhat complicated by the fact that I had a gastric by-pass about 6 years ago.  I find myself unable to eat most foods, and for the first time in my life, dairy is a big trigger (even lo fat cottege cheese, etc.)  I'm only able to eat poached eggs w/white toast, chicken in soup, and turkey slices.  I've lost weight and any steroid-induced energy is gone (although who knows how I'd feel without them...maybe much more fatigue.) 

The good news is that the mets have stopped spreading.  I go to the onc derm every 2 weeks and he freezes what's left on my scalp/face/neck and in my ear.  (sorry this is still bold, I can't get it off.)  Then I apply Aldera to everywhere he's frozen.  The most stubborn spot is in the ear canal, because he can't spray directly in but has to put gauze in and spray that. Aggressively!  I take Oxycodone 1/2 hour before he starts and I still almost fall off the table.  But I couldn't care less about the pain.  Even the ear is getting better with this system.  Also, we left one spot untreated so that if it gets larger, it would be the measurable disease required for Anti PD-1 trials.  Yesterday when I went, I felt that it had flattened a bit, he wasn't sure, so he photographed it against a ruler.  (should have done it last time, but nobody's perfect.)  Also, I have white hairs growing in my tweezed eyebrow and chin hair, which Dr. W. said is a great sign.  So, I am cautiously optimistic.

I think that's about it...sorry this is so long, but there's so much unknown about Yervoy, I wanted to provide as much info as possible.

Take care my friends,

karen

Don't Stop Believing

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justlittleoleme's picture
Replies 3
Last reply 5/9/2012 - 7:30am

Liver function is getting better.  He has now developed hemolysis in addition to diabetes.  The darned steroid is kicking his butt.  They have now pulled Temodar off the table.

So frustrating.  The steroid has caused loss of strength so it makes it very difficult for him to do the stairs.  Imagine, a 41 year old man who was recently training for his black belt and he can now barely do a flight of stairs.  He has lost all of his toning and conditioning. 

We know his time is limited so we are trying to make the most of every day we have been given.

We don't know how strong we are until being strong is the only choice we have.

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susanr's picture
Replies 11
Last reply 5/15/2012 - 3:33pm

Hi Everyone who reads this.  I have been reviewing the posts and think I know the answer to my question.  I would like to hear input/advice to anyone who has progressed with mets or have their mets become larger while receiving yervoy or after they finished infusions.  Appreciate the feedback and hopefully it can help others understand this drug.  I see may posts about yervoy and many feel confused about this drug.  I understand what it does but since there is not much on post market studies, We have to rely on each other to get some sense on how this drug works/responds.  Appreciate any feedback.

Susan

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This is very interesting because the Immunotherapy (Anti-PD-1) has caused me to have some white splotches called Vitiligo...my onc says its a great sign the treatment is working for me...this article also states

"Genetically, in some ways vitiligo and melanoma are polar opposites. Some of the same genetic variations that make one more likely to have vitiligo make one less likely to have melanoma, and vice-versa," said Spritz. "Vitiligo is an autoimmune disease, in which a person's immune system attacks their normal pigment cells. We think that vitiligo represents over-activity of a normal process by which one's immune system searches out and destroys early cancerous melanoma cells."

http://www.medicalnewstoday.com/releases/245073.php

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Replies by: montana girl, Janner

Hi, I was wondering about a bluish spot that showed up 1/2 inch away from my scar on a melanoma that was removed 9 mo ago, is this somthing i should wory about?  I have severl moles the dock sed he would watch.  I also just 1 week ago found  a lump in my rite breast and a very tiney light red mole over the top of the lump .  to meney doc bills  , and no INS... and im afraid to go back to dock  i just cant aford it  . has eney one had this befor ?

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Anonymous's picture
Replies 3
Last reply 7/12/2012 - 8:00pm
Replies by: Sia, imissmommy2003, Janner

Say you have been messing with it for months, then you finally get it removed, could it look worse under microscope because of that picking? 

I would also like to ask, can I reverse my sun damage?  I have read that smokers if they stop smoking their lungs can heal.  Can your skin heal?  If I don't get any more sunburns does that mean my risk of another melanoma is low again?  Or does it take a while for past behavior to catch up?  I had multiple, blistering burns as a child. 

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Gene_S's picture
Replies 1
Last reply 5/7/2012 - 8:48pm
Replies by: H555

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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AlanM's picture
Replies 3
Last reply 5/8/2012 - 5:38pm
Replies by: triciad, aldakota22, Karin L

I was diagnosed Stage 4 (brain met)  in  April 2011. Just had my 1 year scan and it was all clear! I treated the brain met with the gamma knife in May, 2011. And then ipi in the fall. So far the brain met has not disappeared, but has shrunk and swelling has subsided. Anybody have experience with how long it can take for the met to disappear completely? Anyway, just thankful to hear the good news today. And thank you to all those that post and respond on this site. The information I have gathered here has been very helpful.  Regards, Alan

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worriedwife's picture
Replies 1
Last reply 5/7/2012 - 2:34pm
Replies by: Janner

My husband was dx with mm in 2000. i really dont remember the specifics of his classification, except that it was serious. sentinal node mapping showed micro mets to level 1 lymphnodes in left arm. He was only given a small chance of survival at the time. WLE and a year of interferon took its toll on his body, but 11 years later he is still here. 

He was recently hospitalized for diverticulitis. They did not do surgery at the time, because it responded well to antibiotics. CT enterogrphy results show a possible fistla. (he gave me this info over the phone so i done know where in hus intestines.) He is scheduled for a colonoscopy, but not until early june. I read that recurrence frequently happens in the intestines. Should this make me push to have them move his colonoscpy sooner? Could there be any relation to the fact that his primary lesion was on his lower back, just about even with his liver?

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