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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Lucassi's picture
Replies 2
Last reply 6/14/2012 - 10:11pm
Replies by: Lucassi, Janner

My husband Mike has stage V melanoma. (acral lent. with spread to lung)   He is scheduled for his fourth Yervoy infusion on Tuesday.  Has been tolerating the treatment well with no side effects other than fatigue.  However, he does have several (at least 4)  new mole-like bumps on his upper right leg about the size of a pencil eraser..  (same leg as primary tumor on rt. great toe).  The oncologist agreed that it is most likely melanoma but said that if the moles did not bother him he does not need to remove them at this time. Thinks they can be used as a marker to measure if the Yervoy is working.  I have been thinking about the situation and I believe it would be better to remove the moles.  Could it not be possible that these moles are a second primary?  What if the Yervoy does not work.  That would mean that these moles will just get bigger and become more invasive.   Although I am not a doctor, these moles look like nodular melanoma to me.  Has anyone else have a similar experience.   Your opinions would be greatly appreciated. 

Sigrid
 

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Jessmoon's picture
Replies 6
Last reply 6/14/2012 - 9:55pm

My husband is 9 months post diagnosis of metastatic melanoma (had small lump on leg that was removed and diagnosed as metastatic melanoma with unknown primary site.  There were no melanoma cells in the epidermis and 3 pathologists confirmed metastatic melanoma).  After being seen at Mayo clinic for a second opinion, we have been doing Leukine injections for nearly 9 months with CT scans every 3 months. His scan today demonstrated a 2mm liver nodule.  Our local oncologist stated this wasn't anything to worry about.  I have two questions:

1.  Has anyone else had liver lesions this small turn out to be metastatic disease?  We are having a repeat scan in 3 months.

2.  He will soon hit the 1 year mark and our local oncologist is recommending just having scans completed annually? I thought he would need to continue at least scans every 6 months for a couple years. What are other oncologists recommending for follow up? 

I find this disease to be so frustrating because nothing is cut and dry-there are no specific studies that indicate how often testing needs to be completed....I'd rather be on the safe side and have scans more often.

Whew, thanks everyone. I am on this site often and appreciate all the info!

 

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ladylite77's picture
Replies 8
Last reply 6/14/2012 - 3:33pm

I am wanting to know (out of curiosity) if there is a time limit on interferon treatment after diagnosis? I was diagnosed 1 year and 3 mos ago...did surgery, etc. I am stage III metastatic(lymph nodes). I decided not to do interferon after lots of research and specialist input. However, I am now questioning that decision . Is it too late to change my mind? There are many factors causing me to ask this question...I think I will post them in another place.

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cwu's picture
Replies 12
Last reply 6/14/2012 - 1:56pm

Hi all,

I have read and heard that Yervoy has a delayed effect and sometimes doesn't work until months after the last infusion. Since there are many out there who are on or have used Yeroy, I thought I ask the question. At what point did your doctor conclude that it didnt work for you and what was the basis? At your first scans (around 3-4 weeks) after the last infusion?

My father had his last dose today and his doctor is not all that optimistic as his tumors have gotten worse. However, he still hasnt offerred us any other options except decarbazine which is not very effective. I am just so frustrated.

Any thoughts,advice, suggestions are welcome and appreciated.

Chau

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LibbyinVA's picture
Replies 4
Last reply 6/14/2012 - 1:34pm

Just wondering...is PET scan still the best for determining metastasis of melanoma? It's been a while since I have done my homework in this area. If this is still true, does anyone have any suggestions on appealing insurance company denial of a PET scan?

I have melanoma but melanoma does not have me!

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Kimberly Duncan Watts's picture
Replies 5
Last reply 6/14/2012 - 9:26am

Scans yesterday. Prelim report in35 mins. Please please send what I call a ZAP prayer for NED.... Hugs for it and continued prayers for everyone. Thanks from the very depths of my heart and soul!

I can do all things through Christ who strengthens me.

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robbier's picture
Replies 1
Last reply 6/14/2012 - 2:02am
Replies by: JerryfromFauq

Well tomorrow I go for a cat  scan, then next Tuesday I will go so my Oncologist to get the result.  so far I have been in remission for 9 months now, and looking forward to getting a good report next week at checkup.  I can't believe that its been 9 months since surgery for melanoma,  classified at stage lll either A or B depending upon which Doctor you ask.   Haven't been to site lately, have decided to go to school and take a few classes.  Reapplying how to add, multiply and divide fractions.   

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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Becky's picture
Replies 10
Last reply 6/13/2012 - 9:30pm

Hi

I don't post often but read these boards daily. As a recap, my son Ben was dx with MM in June 2009, right before his 21st birthday. It was very rare oral melanoma (tongue) that had spread to one lymph node. 2 surgeries and one year of interferon.

He had been getting scans every 6 month and was due for one in january. But he was planning a 3 month trip to Europe ( your typical euro-rail pass-backpack-youth hostel trip with a buddy) and I think he was afraid they would find something on the scan and he wouldn't be able to go, so he asked the doctor to put it off till he got back. So, my scanxiety was even higher since it had been almost  year since his last one.

Just got the rresults, still NED..feeling very blessed!

Keep fighting everyone

Becky

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NYKaren's picture
Replies 19
Last reply 6/13/2012 - 4:53pm

Hi everyone.

So, as previously posted, had to stop Yervoy after 3 infusions due to pretty serious colitis.  Last infusion was 4/29; still dealing w/colitis.   Have already done radiation and IL-2.  After initial positive signs, was not a responder to either. 

After weaning off steroids 3 weeks ago, still experiencing extreme weakness, no appetite--loss of 20 lbs, even on Prednisone, and still  diarrhea with daily use of either Lomotil or Immodium and still on Endocort EC.

Endo. says my Adrenal gland never woke up after Pred. wean, so she started me on 15 mg./day of Hydrocort.  It is stopping the diarrhea and doesn't seem to have the horrible side-effects the Pred. did.

I don't think the Yervoy did anything...the mets on my face are on the move again, after halting during the Yervoy treatment.  The one under my chin that i was "saving" for "measurable disease" eligibility for Anti-Pd1 trial is bigger.

Spoke w/Dr. Wolchok today (seeing him next Thurs. after chest/abdomen CT).  He feels that the it would be dangerous for me to be in the Anti PD-1 trial. All those hopes--gone.  He thinks that I should have the met under my chin removed.   (I'm continuing to have the new mets frozen & applying Aldera.  Putting Aldera on my face--I might as well be applying Ponds cold cream--it does absolutely nothing.)   I asked him if the big side effect to worry about from PD-1 is pneumonia, what the problem is, he said that A) colitis has been reported, and B) he just won't take the chance.   And besides, all the seats at Sloan for the newest BMX trial version (Anti-PD1 after Ippi) are now filled.  

So, unless something develops on the CT scan next week, it looks like my  next step will be chemo. (Has to be CT, not PET to monitor colitis--there is now some kind of lump that moves when I touch it on my collar-bone--Dr. W. said if it's something, it should show up on CT, and he'll say more about it after he sees me).   I know it was stupid to hang my hat one one treatment, but I did.  I know I'm only IIIc unresectible (hopefully still.)  I'm just worried because the mets are spreading fast again, in my ear and from scalp to below chin.  I know I need to look at those around here at people so much worse off than I, put some gratitutide in my attitude and pull up the bootstraps again.  I just need a little help with that today. 

Please don't let this be one of those days that nobody responds to my post, even if you write to kick my ass, I need you guys.

Thanks,

karen

Don't Stop Believing

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Anonymous's picture
Replies 3
Last reply 6/12/2012 - 8:43pm
Replies by: Janner, washoegal

Once melanoma enters the VGP, does that mean that the mole starts to raise up or form a visible tumor? Can a VGP melanoma be flat?

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LibbyinVA's picture
Replies 8
Last reply 6/12/2012 - 2:47pm

Just wanted to share my story and some positive, hopeful news. On 6/6/2012 I celebrated 7 years of being NED. I was dx'ed in 2005 with stage IIIb metastatic melanoma. Treatment included several surgeries and a vaccine clinical trial in 2006 under Dr Anna Pavlick at NYU. Feeling very lucky to be alive but, missing too many friends made here on this board who were not as fortunate. I hope and pray daily for a cure for this awful disease. Never give up hope and believe in miracles...I am one!

Wishing everyone the best!

LibbyinVA

I have melanoma but melanoma does not have me!

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Anonymous's picture
Replies 10
Last reply 6/12/2012 - 6:54am
Replies by: MeNDave, Gene_S, Tim--MRF, Janner, Anonymous, Linny, kylez

I am so angry.  As a typical person living in US, I've been very good about protecting my skin from sunburns and not using tanning beds.  But I was dx with melanoma.  I feel it is misleading the way that all the info/public info is about sunblock.  Is that so they make money?  The info should be about new moles and moles that change.  It really doesn't matter if you use sunblock.  I did not think it would happen to me because I followed all the rules.  The melanoma campaign needs to change.  It can happen to anyone, not just tanning bed users and people who bake themselves to a crispy brown.  The information gives false sense of security to those of us who didn't abuse our skin.  It makes us think it can't happen to us.  I guess sort of like lung cancer can happen to people who don't smoke.  But it does happen.  I'm so angry that I ignored something because I wasn't a red head who burns easily and goes to a tanning bed.

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skgharst's picture
Replies 3
Last reply 6/12/2012 - 1:42am

My father has stage 4 mastitic melenoma. He started 3 weeks ago w/ Zelboraf, and he had been having mucus/heavy saliva/spit that makes him cough . He thought it may be sinus drainage & doesn't want to think about how it could be the melenoma. He  is wondering if it could be a side effect  of the drug. Has anyone else experienced anything similar?

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AlisonC's picture
Replies 9
Last reply 6/12/2012 - 12:47am

Hello fellow travelers,

I apologize that people have been asking about my friend David and that I haven't been earlier to share the news..even now it's news I don't want to write. David died on March 29th....leaving his wife Leah and their three young children. We all teach in the same school here in Singapore and it hit the community very hard (particularly since it's been a brutal year for our "family" here, with another colleague diagnosed that week with a stage IV brain tumour and a colleague diagnosed with stage III carcinoma only 3 weeks ago, on the day she gave birth to her second daughter). There was an amazing memorial in the school auditorium with over 700 people, including Dave's students, and out-takes from some of his films....he was a film teacher and in fact this time last year was preparing to shoot his first full length film, called "The Durian King" which you will find online if you google. Students and family have been raising money to finish the film's editing since he died because it was a life-long dream of his.

Dave didn't get to use temodar. His Mel just grew SO fast at the end. He was fine and in remission til October when he had his first 3 brain mets (resected and SRSd), then all was well until March, when there were 3 more...but pretty much right after they started WBR in the 2nd week of March, he was less responsive and in hospital. A scan 10 days later showed more than 20 tumours and he died a few days after that. He was BRAF positive - which we thought might mean he'd caught a break- but zelboraf didn't offer him what we had hoped.

I don't think I've ever known what to say when telling people, but telling this community seems particularly hard because I know how much I - and many people - use this forum to keep themselves buoyant ...or at least coping. That's been a disservice to Dave though because I should have posted earlier to let you know of his death since he had friends and a cheer squad here.

I hope it will be the last death for a long long while among the MPIP community.....

AlisonC
Stage IIIB
NED since 2001

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Carla Edge's picture
Replies 3
Last reply 6/11/2012 - 10:12pm
Replies by: kylez, Swanee

I am new to this board.  My husband is stage IV with a met on muscle around his small int.  He was diagnosed in Jan and was randomized into the TIL study at the NIH.  So far, they can't tell if the tumor is growing slowly or just changing shape.  We are deciding this week the next step to take- likely ipi.  Roy was feeling pretty good after release from hospital.  Two months later, he feels lousy.  He went from a rather normal existence with an afternoon doze to flat on his back on the couch most of the day.  Nothing seems to cheer him up.  Docs said to expect him to go backwards, but we didn't expect it to be this terrible.  I've tried to be supportive, but find myself acting impatient and "witch-like" sometimes.  Is this the proper forum to vent about all of this, or is there a similar board for spouses/caregivers?  I love reading posts on this board.  Thank you for sharing all of your stories.  They all give inspiration in one way or another.  Thank you all!

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