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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robbier's picture
Replies 1
Last reply 8/14/2014 - 7:38pm
Replies by: Fen

I went to the hospital to get a copy of the bone scan which was done on Tuesday of this week.  I wanted to know what it said.  From my Pet scan of July 23, 2014.  There was a suspected abnormal place near my pelvic area, and right mid thight, suspected place in the marrow.  which was why the bone scan was ordered.

Today I picked up that report and it said no abnormal pelvic acitivy seen.  No abnormal femoral shaft activity.  Just a few places of degenerative disease( like knees, ankles, feet, and spine).  whichI think would be common in older age (58).  I am bery thankful and been thinking my God for the good news.  Now next week my visit to the Doctor to find out what he recommends at this time.

 

robbie

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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Replies by: duncan_aus

I was diagnosed with Melanoma in 2003.  It was deep and took two surgeries to get it all.  Fortunately it was not too agressive and I was node negative.

I underwent a month of daily interferon treatments and then did home injections for a few months until I had to quit because it was so draining I couldn't work.

After each treatment I would get the 'Shake & Bake's.  I would shiver uncontrollably for 3-4 hours and then sweat uncontrollably for 3-4 more.  I finished the treatments in late 2003.

In the 11 years since then I have periodic episodes where I get the 'Shake & Bakes'.  It comes out of nowhere... I feel like I am on interferon for one day... and the next day I am fine.

It happens about once or twice a year.  It doesn't have anything to do with being sick or any other physical issue.

The symptoms are so exactly like those of a post interferon treatment, it is hard to imagine it could be anything else.   If I got sick afterwards or came down with the flu or even a cold... I would assume that was the problem... but in each instance it hits suddenly and within 8 hours starts going away.

I am curious if any other folks who took interferon in the past have experienced similar incidents.

Thanks.

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dvd's picture
Replies 1
Last reply 8/16/2014 - 10:47pm
Replies by: BrianP

This showed up on my Facebook this  AM - just have to share it with those who find the setting familiar...

http://sfglo.be/QC

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LaurenE's picture
Replies 7
Last reply 8/14/2014 - 8:17pm
Replies by: BrianP, Bubbles, Anonymous, eric w, Janner

My dad was diagnosed with metastatic melanoma (primary lesion was removed years ago, later developed one tumor in each lung and then one in the soft tissue of his neck) this past spring and had two surgeries this summer to remove all of the known mets. There was one positive lymph node and some local mets in his neck dissection, and one of the tumor resections of the lung had iffy margins. We have been offered adjuvant radiation to the lung for residual disease, but we have run into road blocks in terms of receiving anything further. Several experts have been kind enough to consult with us over the phone and have said they would try to give him ipilimumab even if there was no tumor to monitor, however as this is technically considered adjuvant, it is not FDA approved. Regardless, we know the melanoma is not gone, it is still metastatic, and I think that some insurance companies could approve it - but none of our local oncologists will offer it - or even IL-2 (and we are concerned that in the end these experts may waiver on offering it, as well, if we transfer care). 

Has ANYONE out there been offered systemic treatment after surgical removal of all known mets? If so, what? And by whom? 

Thank you in advance for any insight!

 

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CHD's picture
Replies 2
Last reply 8/15/2014 - 12:02pm
Replies by: CHD, JerryfromFauq

Does anyone have any idea of how effective yervoy is with mucosal melanoma?  Links to current research and/or personal experience would be much appreciated.  I am having a hard time finding anything about this.

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/16/2014 - 1:42am
Replies by: Jubes, Anonymous, Janner

Hello, I am new to the community and am hoping someone will be able to share some insight. I noticed a brown spot on the bottom of my foot last Friday afternoon. It was in a hard to see place on my right foot just beneath my pinky toe and I was immediately concerned. I've been trying not to consult Dr. Google but the little I read is freaking me out. I am 6 months postpartum with my second child and have been experiencing anxiety as it is. I know worrying isn't going to help or change the outcome but I can't help it. I'm trying very hard to be positive but I also want to be realistic. So I called and got in for a last minute appointment with the dermatologist last Friday and she biopsied it right away. It looks like she cut around it and scooped it out. She told me the results will take 2-3 weeks but I have a follow up scheduled for a week from this Friday which will be 2 weeks after the biopsy. I don't think it passed the ABCD's. Any thoughts on this? TIA

 

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liam1209's picture
Replies 5
Last reply 8/14/2014 - 8:24pm
Replies by: BrianP, tschmith, Linny, hbecker

How is Johns Hopkins in treating metastatic melanoma?  I have been recommended several specialists in the US but none at Johns Hopkins.  My dad lives in Central America and has metastatic melanoma and the top hospital in central america has a partnership with Johns Hopkins.  Would be quite convenient for my father if he could be treated through Johns Hopkins.   What are your thoughts on Johns Hopkins and is there a regarded specialist? 

Liam 

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Nell's picture
Replies 14
Last reply 8/21/2014 - 6:33pm
Replies by: Bleeds, Nell, Anonymous, Mat, BrianP, Marianne quinn, kylez, jogo

Next week I was to have a 4th  infusion of Yervoy. Diarrhea has become progressively worse, so I have been taken off Yervoy and put on prednisone. Just wondering what side effects of prednisone any of you have experienced.  Also, what happens if this doesn' t stop the diarrhea?  Then I wonder if there is a possibility that I could still have the last infusion at some point? I know only a small percentage of us will be Ipi responders, but is it still possible now that I will miss the last dose? Disappointed....:(.....also nervous because I know this colitis can get serious....Thank you for the help.....I wish blessings on all of you.

One voice can make a song; one life can change the world.

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kelvin's picture
Replies 2
Last reply 8/15/2014 - 9:47am
Replies by: Nicky, jahendry12

Can anyone tell me how serious stage 4 actually is,I know all cancers are serious,I'm a year and a half into it have had surgery's and radiation a year ago but still feel pretty crappy,

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/14/2014 - 1:17pm
Replies by: Anonymous, Janner, casagrayson

the description by my dermatologist was: dermoepidermal junction contains a primary nested melanocytic proliferation.Within the superficial dermis, discrete nests of melanocytes with slightly smaller nuclei are present. Lateral to the dermal portion of the lesion,slightly atypical melanocytes proliferate which bridge and fuse adjacent rete and are associated with a superficial fibrosis of the papillary dermis.In foci there are melanocytes in suprabasal locations with larger nests.

 

diagnosis:     Compound nevus, dysplastic type with moderate dysplasia, extending to the base of the specimen.

conservative re-excision has been advised. I am just looking for more feedback on this as this is in a region with very close proximity to lymph nodes and other vital organs.

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 8/30/2014 - 8:31pm

Cancer should be classified by genetic and molecular types, say scientists

Just wondering what the proposal in this article would mean for melanoma? Other than BRAF and CKit, what would the types be?

If anyone knows something I could read to find out, please let me know.

Thanks -

Hazel

blogging at www.hazelbecker.com

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/14/2014 - 5:28am

Can anyone suggest the best melanoma specialist and the best hopital in India?

God bless you

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pigs_sty's picture
Replies 2
Last reply 8/13/2014 - 11:41pm
Replies by: Marianne quinn, eric w

Hi,

My wife has just had second infusion of Ipi and we have noticed increase in WBC and neutrophil, both by approx double. Have other Ipi users seen this, is it linked to a postivie response?

 

 

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pigs_sty's picture
Replies 6
Last reply 8/18/2014 - 2:24pm

Hi,

I'm just looking for future options for my wife. Stage 4, BRAF +ve, failed Vem and has now started on Ipi (2nd infusion) so fortunately we have PD1 and possibly TIL to try if Ipi fails. I'm just looking for things I can reasearch in to for the future. So far I have read about:

Anti LAG3

Anti GITR

Anti KIR

Can anyone help with other possible treatments to reasearch? Many thanks

 

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pasadenagirl's picture
Replies 1
Last reply 8/12/2014 - 2:40pm
Replies by: CHD

Good morning:

 

I was wondering how long it takes for lymph node swelling to go down after a SNB.  I had SNB on June 26th, two locations right under arm and right groin, all nodes were negative.  I have had no problems with under my arm, but I still have a hard bean shaped knot in my groin.  In addition as the day goes on my hip, thigh even knee will feel as if its badly bruised.   There is no swelling or redness it just feels very bruised.  

Thanks

Gwynn 

 

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