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
Replies 4
Last reply 10/12/2011 - 3:18pm
Replies by: barb3246, Hereiam, Janner

I have been really worried about a pink lesion on my upper arm that has been there for 3 months since I had my WLE for an in-situ on the same arm, so I finally called to see if there were any cancellations, and surpisingly they took me last week. He completely removed 6 "interesting" looking moles via punch, and took a punch biopsy in the middle of the red patch on my arm, so a total of 7 biopsies. YIKES!!  He made some comments about "well this one has fuzzy borders", and "this one has an interesting shape", and "that one is very dark". He wouldn't commit to what he thought the pink lesion was, just that "it could be anything". Of course I have already decided that it must be an amelanotic melanoma!

I'm not sure if any of the moles that he removed have changed or not. I never really even noticed a couple of the ones he removed. Several of them looked like the in-situ, which actually didn't look too scary anyways - it was just a small flat mole that was a bit darker than my other moles. Nothing that really alarmed me, so that's why I am worried. I have LOTS of weird looking moles on me. I have had probably 30 moles removed over the years, and most have come back as mild-to-moderately atypical. One was severely atypical, and the most recent was melanoma in-situ. Maybe he is just being extra cautious, which is fine, but I wish he had said something reassuring to me so that I wouldn't be so worried.

Now I'm a nervous wreck!! All I keep thinking is, what if some of these turn out to be melanomas too? I wonder how common it really is to develop multiple primary melanomas.  I've read that its around 10%, but it seems like a LOT of people on this site have developed several, so it seems like maybe the 10% is low.What if I'm not so lucky this time and its more advanced than in-situ? How do I learn to live with this constant fear??????? I really need to get a grip.

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Happe10's picture
Replies 2
Last reply 10/12/2011 - 12:35pm
Replies by: Janner, mombase

So, you all don't know me, but I feel as if I know all of you. I have been following the board daily for a year and 5 months, since just before my diagnosis. I have never posted as I did not feel as though I have the right to. My melanoma was in situ, it was removed and I thought I was done with it. Mentally, it is not over and I am still very afraid. I have hundreds of moles and needed to know that someone else could help me survive this. I decided to do follow up at MDA. I live North of Houston. I have gone to my follow ups, have some lovely new scars and some fabulous full body shots to keep a lose eye out. So far, so good. All have come back fine. I am in good hands but am still trying to get my head on straight. 

Most people would have thanked God and moved on. Somehow, I have been stuck here. I have moved on with my life but part of me has been here with all of you. I think it is part of my heart, maybe a piece of my soul or maybe my innocence. I am not sure. I know that I am not the same person I was before melanoma. Something happened to me after my diagnosis. I changed. I have felt so many emotions over the last year following your lives. I feel guilty that I was so lucky. I want to understand why I am here and you are there. Why not me? I have been searching for the answer for so long. I have been watching from a far, celebrating your joys and crying at your loses. I have followed research and studied clinical trials. I have PRAYED! 

I will continue to pray for you and your families. I will pray for strength and peace as you battle this horrible disease. I know in my heart that a cure is just around the corner. So now I am going to say thank you to Janner. I am leaving the board now after reading your last post. Why am I still here? I wanted to make sure you are all ok I guess. I have been waiting to witness a miracle. I have read a few and they give me such hope. I have wanted to find that answer, why NOT me. I am starting to realize that I won't find that answer here. 

What I did find is a group of the most courageous people on the planet. Thank you for sharing your lives with me. I am so grateful for your knowledge, honesty and love for each each other. Your courage is unending and your compassion is inspiring. I am a better person for having found this board. 

With gratitude,

Amanda

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nickmac56's picture
Replies 7
Last reply 10/12/2011 - 9:51am

A new chemo regimen for her. She's pretty beat up from her recent gammaknife treatment for the five brain tumors and the removal of the golf ball size tumor on her arm. But she knows she needs to try this. She's not thrilled about the upcoming hair loss to say the least. But if this treatment buys some time and gets her through the holidays she will be happy. Supposedly it is not as side effect laden as more typical chemo treatments - fatigue and hair loss being the notable side effects.

http://www.medicalnewstoday.com/releases/170168.php

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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deardad's picture
Replies 3
Last reply 10/12/2011 - 8:00am
Replies by: Anonymous, deardad, FormerCaregiver

Any suggestions for next plan of attack after BRAF not working?

After 3 weeks on Vemurafenib my dad has developed a egg size lump in his throat and is having scans this Monday. What do we do if they take him off this drug? Hes 64 with liver spleen and prior craniotomy. Not sure if theres anything going on up there yet. Any experiences after BRAF would be great. Thanks.

Nahmi from Melbourne

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Joan C's picture
Replies 16
Last reply 10/12/2011 - 2:39am
Replies by: bcl, Donna, Anonymous, Joan C, Donna M., jax2007gxp

I apologize if someone already posted this, but I just read it.  I hope all the other states follow suit!

http://www.msnbc.msn.com/id/44837627/ns/health-skin_and_beauty/#.TpIZeM3...

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j.m.l.'s picture
Replies 1
Last reply 10/11/2011 - 11:00pm
Replies by: kylez

Has anyone had a side effect from yervoy which led to intense buzzing in the ears and head? We cant seem to make the connection. This condition started 2 days after the second dose of IPI. Seems to be effecting left side of my head, ear, eye. Any ideas? thanks

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kbc123's picture
Replies 5
Last reply 10/11/2011 - 6:22pm
Replies by: Jydnew, Anonymous, Hereiam, Janner

Good Morning Warriors..

I am trying to convince myself that I am just have total ANXIETY and there is no NEED to worry but I cant help but ALWAYS bringing Melanoma up to the forefront...

I am considered Stage 3a (a few cells found in one sentinal node by NYU - mole was 1.01 - non ulcerated - wide excision and LNB in February 2011) and here I am, eight months later..

I was also diagnosed two years ago with a herniated disc at L5-S1 - I had horrible back pain.  they sent me for MRI and for therapy and that was that.  I was cured never to have a problem with it again. 

Last Wednesday, I dozed off on the couch, woke up in the middle of the night with pain, not horrible pain but pain, lower back again, that progressively got worse through the day.  I did visit my ortho by the end of the week as I was in horrible pain again.  ASSUMING I am just dealing with SCIATICA again, he sends me to Physical Therapy, which I am doing, but I cant help but THINK, can this be something starting in the back now?  I know, I AM probably crazy, ( no, I KNOW i am crazy - that is a proven fact) however, does anyone think I should CALL my oncologist and run it by him.?  I have to say I do feel, maybe 10 percent better than last week, but it just feels like it is taking forever to start feeling myself again.  I was on Medrol Dose Pack and some non-narcotic pain meds but I still have the pain down the butt and thigh and its tough getting around.

So, give me some input, so I can sleep at night again !

Hope this note is finding everyone having a great AUTUMN day !

Kathy

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kim2712's picture
Replies 4
Last reply 10/11/2011 - 4:18pm
Replies by: kim2712, Rebecca and Bob, Anonymous

Hi James,

I remember awhile back when I posted about the pain of losing my son you had said to email you if I wanted to talk. I can't find your email address. Mine is kim.hartzell@hotmail.com if you could please email me sometime.

Thank you,

Kim

Mom to Erik 6/11/1985-5/22/2011

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Melanoma pathways and targeted therapeutics. Several investigational agents designed to inhibit cell-autonomous melanoma pathways or augment antimelanoma immune mechanisms have entered clinical development. Proteins that have been targeted in melanoma clinical trials are indicated (red bars and bold arrow). The MAP kinase pathway (bottom left) has been targeted by RAF and MEK inhibitors, the PI3 kinase/ AKT pathway (bottom right) by TOR inhibitors, and the cell cycle by CDK inhibitors (bottom middle). Drugs inhibiting the Hsp90 chaperone protein may lead to degradation of several activated oncogenes (see text for details). The Bcl-2 antiapoptotic oncoprotein has been targeted by an antisense agent. Aside from IFN-α and IL-2, recent attempts to enhance melanoma immunotherapy include toll-like receptor agonists (top left) and CTLA-4 antibody blockade (top middle). These are predicted to generate a more effective T-cell-mediated immunotoxicity to melanoma cells. Strategies to interdict RTK such as c-kit may prove fruitful in the future against defined melanoma subtypes.

http://3.bp.blogspot.com/-mgzptUXRrP8/TpSYkZdrl2I/AAAAAAAAAiQ/eGP2po96Umk/s1600/Melanoma%2BPathways%2Band%2BTargeted%2BTherapeutics.jpg

 

Best regards,

Jimmy B

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MaryD's picture
Replies 13
Last reply 10/11/2011 - 10:56am

Just wanted to share some encouraging news - I am so humbled and grateful to report that my recent scans were clear and finally made a 3 year mark without a  recurrence.

I was DX in 2001 and in 2007 moved to stage IV status via one lung met.   During the past 10 years, I've done 1 year interferon, a peptide vaccine trial, radiation, an Ipi trial for resected disease, and finally, 6 months of pulsed IL-2 treatments two years ago.

Needless to say, I will never take this for granted.   Over the many years I have been on this board, there have been so many brave warriors fighting this disease with such grace and dignity  and there seems to be no rhyme or reason as to the outcome.

I can only hope that this news provides hope and encouragement to all of you who are fighting this battle.   Please know my prayers and good thoughts go out to all of you . .

Best regards,

Mary

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Bruce in NH's picture
Replies 5
Last reply 10/11/2011 - 8:10am

Hi,

I am in the process of completing the 42 day Temodar chemo pill program which is designed to attack the melanoma metastases in the brain. I have just completed the 25th day of 42. My question has to do with how many days after the program ends should the next brain MRI be done to assess treatment success. Since it's a chemo based product, one would think you might need several weeks for the chemo to knock down the mets. If you have experience is this area, I would like to hear from you. I need to get down to 3 or less mets to enter the t-cell clinical trial at NIH in Maryland, so this is very important to me that Temodar be successful. Any related comments regarding your success with this drug are appreciated.

Bruce

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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LynnLuc's picture
Replies 2
Last reply 10/11/2011 - 4:30am
Replies by: Anonymous, King

12 weeks have come and gone...had my last doses on Wednesday in the 12 week trial titled "

Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy Comprising gp100:209-217(210M) Peptide, MART-1:26-35(27L) Peptide, gp100:280-288(288V) Peptide, NY-ESO-1 Peptide, and Montanide ISA 51 VG in Patients With Resected Stage IV Melanoma". Had to have a couple days of thyroid scans...and as the radiology doc says.."Ms Lynn it appears yout thyroid has conked out and we need to find out why!" My onc says it's expected and actually a good sign the immunotherapy is working since my T 4 is elevated...I don't have any of the good side effects like losing weight and having energy etc etc...I am butt dragging tired! My onc does want me to see the endocrine doc tho...next week I have my CT/MRI scans ( eeeek!!!) to follow up with the trial and see where I am at and another apheresis...hoping to still be NED and will continue to do this trial another 12 weeks....Dr Weber says for now he doesn't want to change a thing as I am doing extremely well

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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Anonymous's picture
Anonymous
Replies 9
Last reply 10/10/2011 - 12:04pm

Have been dealing with Melanoma Stage 4 to Liver for over a year. Multiple traditional therapies and clinical trials attempted. Not much success. Anyone have a recommendation for alternative therapies such as supplements/health food items??

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Nan in Nebraska's picture
Replies 4
Last reply 10/10/2011 - 2:15am

Does anyone know if Medicare is approving and  paying for Yervoy? I'm anticipating re-induction. Have scans May 24th.

Thanks,

Nan

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deardad's picture
Replies 6
Last reply 10/9/2011 - 5:54pm

Hi just a bit alarmed that my dad found a swollen lymph node in his neck tonight after three weeks on vemurafenib. Two small tumors on his body have flatterned out completely but now we have found this lump in the neck? He did have a sore throat for a week before but everyone is so stressed out! Does that mean BRAF isn't working or are we just being overly worried? Im so over this stupid disease and its so heart breaking to see my dad and mum go through this...any information would be helpful please.

Daughter of the patient.

Nahmi in Melbourne.

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