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.

Expand/ Collapse Topic
 
Replies By
View Topic
Jubes's picture
Replies 10
Last reply 4/13/2015 - 4:48pm

Does anybody else on keytruda have terrible mech back and shoulder muscle pain? Thanks

anne-Louise 

Login or register to post replies.

flaglerjoe's picture
Replies 6
Last reply 4/13/2015 - 4:38pm

After a trip to see a new dermatologist after having a bad experience with another, I was diagnosed with stage 1b melanoma. Today I found out that the tumor removed during the WLE was actually 1.96mm rather than the 0.55 indicated by the punch biopsy. The initial shave biopsy indicated an atypical mole and the punch biopsy showed melanoma 0.55 mm, probably nodular with a mitotic rate of 2. The surgeon did not feel the SLN biopsy was warranted as it was thought to be smaller than 0.75 mm. Hidsight is definitely 20/20 on this one.

Now, I am headed back for a SLN biopsy ASAP. If something is found, I would like to look for an actual melanoma specialist. Does anyone have any recommendations for someone living in Florida? I am young and have two young kids so I want to make sure I get the best possible care if anything further is needed. Other good places to read and learn?

 

thanks!

Login or register to post replies.

Replies by: Jubes, Ed Williams

My Mom had MRI scans of her brain taken last week and the results were great. Nothing new to report and while they are watching 2 with edema it all still looks great.  She has been driving since January, take a vacation for her 79th birthday to the Bahamas' and is looking forward to visiting my Nephew in Sweeten this summer.  So, all is great on her end thanks to the doctors at USC. 

-- 1 week shy of the 1 year anniversary of her last gamma knife treatment for 17 new brain mets. - 8 treated in Dec of 2013.

-- The tumors in her trunk (originally 6) have done nothing but shrink or disappear. So, we are keeping our fingers crossed that the next appointment in May to her oncologist will show the same.   

I wish everyone had these results today, but they will one day. 

Login or register to post replies.

rmclean306's picture
Replies 3
Last reply 4/13/2015 - 7:49am
Replies by: Marianne quinn, casagrayson, Anonymous

My doctor just told me that he suspects subungual melanoma on my left thumb. I go to a dermatologist next week. It's scary to think about. How do you post a picture for others to see?

 

Robyn

Login or register to post replies.

Anonymous's picture
Replies 5
Last reply 4/11/2015 - 9:52pm
Replies by: Anonymous, dvd, Ajricc00, Jubes, sweetaugust

Hi, I just returned from my dermatologist's office where i had a growth on my upper thigh biopsied.

 

The background:  a few months ago I noticed a painless little bump that kind of looked like an ingrown hair or something on my upper thigh--but I tried popping, and nothing came out. In any case, I wasn't worried about melanoma bc I knew the ABCD's and it didn't follow that pattern. But this past week I noticed it was increasing in size quickly--so I did another google sweep and stumbled across nodular melanoma and--terrifyingly--my bump had these characteristics. I saw my dermatologist today hoping he would look and say "NBD"--but he was decidedly cautious in the way he spoke about it to me.

In a nutshell, he said it was either a hemangioma, or a type of melanoma that I cannot for the life of me remember what he called...something with an "a"--referring to the fact that it didn't have the melanin that makes things brown? Does anyone know?

He said it looked purple, which was promising--as most are brown or black--though that conflicts with what I've read about nodular melanoma.  He also said that he was happy that it bled when he biopsied it--but I have no idea how indicative that is.

That was most of the substance--the rest of the convo was him trying to walk a really fine line between comforting me and preparing me for a negative diagnosis.

Now I have one week of waiting...and I just wish I could find some positive stories about this rare type of melanoma...but I'm coming up short. Most just talk about how aggressive and deadly it is. Or find at least one bit of info about a hemangioma that looked like what i have--but nothing there either.

I have an 8 month old and I can't stop thinking about him growing up without a mother, and not getting to see him grow up. 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 4/11/2015 - 9:40pm
Replies by: Squash
The Truth About Cancer - 48-Hour Replay Marathon is Happening NOW!
 
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 10
Last reply 4/11/2015 - 4:58pm
Replies by: _Paul_, Anonymous, ldub, akls, Squash

I found this link and wondered what others thought of it. I went to U of M. It took me a total of 3 months to get my wide excision and node biopsy, then a partial node removal. I often wonder if surgical intervention quicker would have made a difference in the status of my node.  Of course, they said it wouldn't when I asked them.  Just seems like an extraordinary amount of time to wait when you are dealing with Melanoma.  Thoughts anyone?       http://www.dailykos.com/story/2015/04/08/1376427/-Yale-study-reveals-mel....    I am not on Medicare and have private insurance.    

 

Login or register to post replies.

The treatment developed by Carl June that is mentioned in the article (and was featured in the last hour of the PBS special) will be tested in melanoma in the near future.

http://www.philly.com/philly/health/20150409_Comparing_immunotherapy_to_other_cancer_weapons.html

Login or register to post replies.

ldub's picture
Replies 8
Last reply 4/10/2015 - 2:03pm
Replies by: ldub, Janner, Squash

I am having my WLE tomorrow on my left lateral calf for an in situ lesion that was approximately 5 mm.  I know generally what the procedure is and have read up on appropriate margins, shape of the excision,  etc. but am wanting to hear from those of you who have had these in the past  - about how long is the procedure, how large was your incision, did it hurt a lot?, do they just use a local, how long were you supposed to stay off your feet (if at all) and average recovery time - when could you exercise, take a long walk, run again?   I was thinking that I was supposed to take it easy for a couple of days and not exercise for about 2 weeks, but the dermatologists at my melanoma center have made it sound more painful with a longer recovery than I imagined.    So now I am a bit more anxious.  Thanks for any input. 

Login or register to post replies.

RGal's picture
Replies 3
Last reply 4/10/2015 - 10:59am
Replies by: RGal, Ed Williams, Mat

My father has been on a study for only 6 wks.  PD-1 infusion every 2 wks + inhibitor.  He went today for scans which according to my mother "aren't good" so they are stopping this regimen and beginning something else in 3 wks.  Two questions, why wouldn't they give it more time and also, do they need to wait 3 wks for these drugs to be eliminated from his system.  I hate the fact that nothing will be done for so long.

Any advice would be most appreciated.  

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 7
Last reply 4/10/2015 - 9:58am
Replies by: Indiana82, jogo, Fen, yazziemac, dvd

Recently diagnosed (January 2015).  Tumor in parotid gland (salivary gland) turned out to be metastatic  melanoma. Had surgery to remove parotid gland (partial) and tumor (with clean margins).  No evidence of primary melanoma found (nothing on skin, eyes, throat, nose).  Clean brain MRI and body PET scans. NED. Going to Mayo next week for another opinion about further surgery and any possible adjuvent treatment.  This past week had a consult with a second ENT surgeon who wanted to remove 15-25 lymph nodes from the neck area near the original surgery site, but decided to wait on this after hearing my original ENT surgeon's thoughts on this.

Has anyone else had a melanoma in the parotid gland, and if so what has your treatment been?

Login or register to post replies.

Joe.Pro's picture
Replies 5
Last reply 4/9/2015 - 10:34pm
Replies by: Anonymous, _Paul_, dentholla, arthurjedi007, tschmith

I'm new here - but how much do you guys know about this already?

http://m.ksl.com/index/story/sid/34059559?mobile_direct=y

 

Login or register to post replies.

Jewel's picture
Replies 11
Last reply 4/9/2015 - 1:53pm

Hello there,

My husband managed to complete all 4 doses of Yervoy 1/19/2015 with very little side effects. Scans on 3/3/2015 showed NED. My question is slowly in the past month or so the itching/rash has become worse and worse, to the point that his sleep has gotten very disrupted, I plan on calling our Oncologist Monday but I was just wondering if anybody might have some advise. He has taken Benadral,  used all the creams, Sarna, Gold Bond Medicated Etc, nothing really touches it. I know they might put him on a tropical/oral cortiosteroids. Poor guy has had enought, thankfully during the day doesn't bother him nearly as much. Any thoughts?

Thanks,

Jewel

Login or register to post replies.

Hi everyone!

I want to share with you the good news that the Melanoma Reseearch Foundation recently hired an online community coordinator. His name is Adam Smartt (asmartt@melanoma.org) and he will be driving the MRF's online awareness efforts, including but not limited to social media, blog, chatrooms/forums and monitoring for/removing spam on MPIP. Please don't hesitate to reach out to Adam about any issues regarding the MPIP bulletin board, especially as it pertains to functionality and spam. We're so pleased to have Adam as part of the team!

You can learn more about Adam by reading his bio on the MRF staff page. Thanks!
 

- Lauren, MRF

LSmithDyer@melanoma.org

Login or register to post replies.

Pages