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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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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yoopergirl's picture
Replies 4
Last reply 5/8/2012 - 5:35pm

My tumor on my arm is just getting bigger and I have to wait until June 3rd for my cscan, just had 3 treatments of yervoy and then the side effects were too bad to have the last one and that is a big concern of mine that only 3 does would not shrink these tumors. So has anyone had a response without the full course of treatment?  Thanks in advance, I know so little about my cancer and everyone here seems to know so much I do know that I am stage 4 with mets in my lungs, arm, lymph node and possib le stomach.

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My husband has been on Zelboraf for almost 3 months when his oncologist told him to take a break from Zelboraf because his blood work results are showing his liver is being compromised (bilirubine, alkaline numbers, etc. are high).  We don't know at this point if this is due to the chemo or cancer.  Since being off Zelboraf, about  7 days now there has been some improvement in liver #'s, but they haven't lowered enough to go back on to Zelboraf according to oncologist.  My husband has a ct scan this Wednesday to see what is going on.  His original cancer pain since starting Zelboraf has gone away so we're hopeful it is working.  If there is liver damage I wonder if he'll be able to go back on the treatment or pursue another treatment (we've been looking into Yervoy and clinical trials).

Has anyone out there had a similar path? 

Thanks for any helpful responses.

Remaining hopeful. 

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deardad's picture
Replies 1
Last reply 5/7/2012 - 11:51pm
Replies by: Phil S

Hi there just wanting to know if anyone has done well on Temodar with brain mets? Any survivors who combined Temodar with WBR?

I'm loosing hope.

Nahmi

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AnnaBanana30's picture
Replies 9
Last reply 10/13/2012 - 8:17pm

To say I'm devastated would be an understatment. My dad first found out he had melanoma in late 2008 when my mom discovered a large mole on his back that was half red and half black. He immediately went to the doctor and they removed it...it was stage 2 I believe at that point. By March 2011 he was stage 3 and by early fall 2011 he was stage 4. He did several rounds of Temodar, Yervoy and radiation and nothing would slow this beast down.

 

Watching him go through all of this pain and suffering has been excrutiating to say the least. I hate this disease and what it did to him. The only comfort I've been able to find is that he is out of pain and is in paradise...pain free, next to God. I will see him again. He'll be up there waiting on me. It is my life mission to spread the word about this terrible cancer. There needs to be more public knowlege on how serious and deadly melanoma.

 

I hate this.

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