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
StephyD83's picture
Replies 4
Last reply 4/14/2015 - 7:52pm
Replies by: Janner, SABKLYN, Toby0987, arthur

Hi All-

I just noticed a small light brown spot like a freckle (I do not have freckles) appear on my excision scar. Could it just really be a freckle or could it be a recurreance? I currently have only 5mm insuffienct margins on a Stage 1a .4 mm thick on my forehead. What are your thoughts??

 

Thanks!

Stephanie

Login or register to post replies.

ashlee12's picture
Replies 8
Last reply 4/14/2015 - 6:49pm

I have a mole that I have had all my life... Well every since I can remember .. It's a medium brown and it's defiantly smaller then a pencil eraser.. Well I noticed sometimes when I itch my arm after I itch it it turns into a bump... Obviously I'm freaking out ... The bump then goes away after some time

 

 

 

im terrified its bad .... And I don't wanna Google.... Any thoughts

Login or register to post replies.

Melissag0624's picture
Replies 5
Last reply 4/14/2015 - 1:51pm

In the news this morning my personal doctor, Robert Andtbacka, who's is a leading melanoma specialist at the Huntsman cancer institute announced that they are one step closer to finding a cure by injecting lesions known to have melanoma with a mutilated form of the cold and herpes virus. The point of this injection is to activate the body's immune system to fight the melanoma and also to teach your body that the melanoma cells are bad and require fighting. They are still very early in the trails but patients who have had very advanced melanoma are having great results and even being deemed cancer free! They are still doing clinical trials, I don't know the specifics and what candidates they are looking for but your questions can be answered by calling his office at 1-801-585-0303. Keep on fighting!

Love, Melissa stage 3b, biochemo in 2013, year 3, primary left upper shoulder with lymph node involvement.

<3 Melissa

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 4/14/2015 - 1:49pm
Replies by: magnus31, tschmith

research has found that people with vitiligo have a certain blood protein that offers them some protection against melanoma?

Login or register to post replies.

Replies by: Marianne quinn, Squash, Anonymous

Hi I was diagnosed in 2013 with stage 3b melanoma that started in my forearm and then blossomed into a 3.3 cm tumor in right armpit.  Mitotic rate was 4. I was whacked and hacked by dr Jacobs at mayo in Rochester mn. I turned down interferon and radiation and just did the surgery.  All the pets have shown a 2cm spot on liver with abnormal uptake and a small spot on my thyroid with abnormal uptake.  Dr McWilliams said not to worry and just to watch it.  They just did another pet and he ordered a fine needle biopsy of my thyroid and it was positive for papillary thyroid cancer.  Sounds like no biggie so I'm going to have alcohol ablation and hopefully that will kill the ptc so I can keep my thyroid.  My question is:  should I request a fine needle biopsy of my liver?  Also would you have them hack  out your thyroid or just alcohol injections.  Kind of makes me nervous about the liver since we waited on the thyroid and only after a fnb do we find out its cancer.  What do you think?

Login or register to post replies.

arthur's picture
Replies 10
Last reply 4/13/2015 - 7:45pm

I posted here about a year and a half ago debating whether or not to take Interferon-Alfa or ipilimumab as an adjuvant therapy and ended up taking Interferon although not necessarily by choice as there were issues with the insurance and Interferon presented itself as the more financially viable option. 

I completed the yearlong regiment of Interferon in September and unfortunately a few weeks ago had a recurrence; one tumor in my lower back, one in my shoulder and three on my brain. My initial diagnosis was Stage 3B Nodular Melanoma so we knew recurrence was a strong possibility although this was much more extreme than I had been anticipating. I've underwent radiation of the brain, back and right shoulder, 10 treatments for each area and my oncologist(s) seem (somewhat) optimistic as they've indicated the tumors are (relatively) small. I can't help but think though that the metastasis is very bad for my long-term prognosis however, but I remain pretty positive. For the record, the initial melanoma was in my right shoulder, 6.5 mm thick, ulcerated and had micro metastasis in 1 of 19 lymph nodes removed from surgery.

Anyways I'm currently seeking several opinions from my oncologist and melanoma experts from UW-Madison and the University of Chicago on what my next treatment plan and ipilimumab once again has come up as what my next likely course of treatment will be now that radiation is complete.

My question is for those of you that have taken it how did you handle it? I know everyone responds differently I'm just looking for personal experiences.

I'm 24 and in good shape and health (except for the cancer of course) and plan on graduating university in December. I mention this because the first month of Interferon was absolutely debilitating and forced me to miss one semester already and obviously would like to avoid that happening again (luckily summer is around the corner).

Any experiences you have like how you felt, side effects, how long you were on it, etc. would be greatly appreciated. I've read nearly every article/fact sheet I can about ipilimumab, but I find hearing personal experiences from people on it to be more beneficial than a cookie-cutter list of side-effects you see online.

Thanks.

 

Login or register to post replies.

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.

Pages