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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jean c's picture
Replies 3
Last reply 6/8/2011 - 9:42am

Has anyone been diagnosed with the above, and what did it look like?  My next to little toe is completely light purple under the nail and has been that way for several months.  It hasn't been bumped or anything.  Comments??

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TEAMM4M is a marathon training program for runners committed to raising money for the MRF.

Want to run a full or half marathon?
Want to join the TEAM?
Know a runner who might be interested?
Learn more here or contact me at cedrington@melanoma.org.

Carolyn Edrington
National Director, Miles for Melanoma
Melanoma Research Foundation

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mzeigler's picture
Replies 22
Last reply 4/25/2011 - 10:52am

I just wanted to report that I lost my wife of 31 years to melanoma last Tuesday.  We started this battle 8 years ago, with acral melanoma under her

right thumb.  After several surgeries, the entire thumb was removed and we had clear scans for 4 and a half years.  Then a small lung met appeared.

That was removed early in 2010.  We had clear scans for about 9 months and then they appeared in her liver, hip bone and lungs again.

We did il-2 at Johns Hopkins is September and October of 2010, which was very difficult.  Scans showed it did not help.  We started compassionate

ipi in December through February, but the bone mets were so painful, we had a partial hip replacement.  While in rehab, the brain mets appeared

and her liver became extremely swollen.  We came home the middle of March and spent the last few weeks together.  I lost the person I was

closest to my entire life.  We shared so many hopes and fears  and life experiences, I can hardly imagine going on without her.  We have 2 sons

which she advised me to be strong for.  At some point I hope the agony will let up, but I don't know.  Her last words spoken were wispered to me

that she loved me.

 

Mike Zeigler

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Rendergirl's picture
Replies 21
Last reply 6/6/2011 - 9:36pm

My pathology came back, the wide excision of my chest wall came back clean, no cancer, but cancer was in my lymph node in my armpit. I met with my surgeon today and she's having me in for a PET scan on Tuesday. Then Wednesday she's doing surgery to remove the rest of the lymph nodes in my armpit. She said I will have an "S" shaped scar, and a drain, and I will stay overnight in the hospital. Drain will stay in 1-2 weeks, and I will see a therapist so that I don't get lymphadema in my arm. And I've been officially upgraded to a stage III. You guys are so awesome and so far everything you've told me has been %100 right as far as what to expect.

Can someone please tell me what to expect with the PET scan? I've been told I'll have an injection, then I'll have to drink something and stay in a dark room until the scan. How hard is it to drink the stuff? Is it chalk-like?

Can someone else tell me what the surgery to remove all the lymph nodes was like, including having the drain for a few weeks?
 

I was talking to the surgeon today with my mom and she kept saying things like "Survival" in terms of "We don't know whether removing all the lymph nodes will affect your survival". It completely freaked my mom out, she didn't think things were that serious yet, and seeing her upset really upset me. Now my whole family is convinced I'm fighting for my life and that things are deadly serious.

Just hopiing for some info here, and maybe a hug or two. Been crying all day... so scared. Thanks guys... again, your are all so awesome. I even told both my surgeon and oncologist about this site.

Becca

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/20/2011 - 8:17pm

Hi all,

Quick question: I had a punch biopsy on my toe. It was moderately atypical with clear margins.

Had more re-excised via slightly bigger punch with no residual atypical nevus seen (which I was expecting)
Had stitch out yesterday after 4 weeks of stitches. It is a bit of a mess, due to it being on toe, one stitch popping out from day 1, etc.

I just noticed right in the middle, deep down, a spec of pigment (stitch? dried blood? pigment?) It basically looks black & dark
I can't imagine pigment since it hasn't even healed, so it's not like it grew back within hours!? Just wondering if anyone had thoughts. I tried to "grab" it with tweezers but it's deep and isn't moving.

Do you suggest I call and go back to derm?

Thanks

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adgesoph's picture
Replies 6
Last reply 4/21/2011 - 4:11pm

My dad is being discharged from Vandy because they say there are no more trials for him there anymore.  Needless to say I'm pissed but he's going to try ipi at UVA, closer to where he lives.  He's getting gamma knife at Nashville for his 3 brain mets and then will return home.  He also has 2 lung mets, 2 tumors on the back of his neck (very painful) and a tumor in his pelvis.   However I guess they feel his disease is pretty aggressive, after not responding the the braf brain met trial.  I just hope ipi can start working in time.  Not sure if he has 12 weeks, according to these doctors.  Anyone had a faster response?

 

Adrienne

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adgesoph's picture
Replies 1
Last reply 4/22/2011 - 5:44pm
Replies by: Anonymous

My dad is being discharged from Vandy because they say there are no more trials for him there anymore.  Needless to say I'm pissed but he's going to try ipi at UVA, closer to where he lives.  He's getting gamma knife at Nashville for his 3 brain mets and then will return home.  He also has 2 lung mets, 2 tumors on the back of his neck (very painful) and a tumor in his pelvis.   However I guess they feel his disease is pretty aggressive, after not responding the the braf brain met trial.  I just hope ipi can start working in time.  Not sure if he has 12 weeks, according to these doctors.  Anyone had a faster response?

 

Adrienne

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lindas58's picture
Replies 4
Last reply 4/20/2011 - 8:17pm

My husband has been complaining of itching at the excision site & also says its sore...Should we be concerned about this? He was basically turned loose so don't know who to ask. Thanks Linda

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Manubuzzi's picture
Replies 5
Last reply 5/6/2011 - 4:27pm

 

Greetings to all, 
 
Hope you are doing well. 
My mom already had two weeks of whole brain radiation and already finished a session of 6 days with temodar.  Since then, she has regained some speech abilities and her motor skills have (slightly) increased.  However, now, we have a new worry:  her concentration, comprehension, and memory have noticeably worsened.  She confuses colors and body parts, she cannot remember the names of her children, she has a hard time understanding orders, and she confuses her words.  At times she has moments of clarity where she is completely lucid and coordinated, but those moments are getting fewer and farther between.  
 
Has any one of you suffered these types of confusions with radiation treatment?  She does have several brain tumors, and maybe those are to blame for her current state, but I just cannot believe that they have advanced so quickly in so little time.  Please write me with your experiences or ANY advice you have.
 
A hug from Argentina,
 
Manuel
Son of patient

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tennisgirl's picture
Replies 10
Last reply 4/25/2011 - 2:01am

Hi everyone.  I sure enjoy reading all the posts and gleening all this helpful information.   This board gives me encouragement and hope.  I have failed GSK BRAF/MEK and now will try IL-2 starting on Monday.  Who was it on this board that is NED after IL-2 and had a lot of helpful advice on how to get through it, what to take to the hospital, etc...??  I would sure appreciate their email.  I can't seem to find the post.   Thank you for responding!  Keep on keeping on.

 

Marian

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TracyLee's picture
Replies 1
Last reply 4/20/2011 - 11:18am
Replies by: Carol Taylor

Hi y'all,

Hoping and praying no one else faces a scalp re-section. That being said, I wanted to post that my surgery took 6 hours, 2 surgeons (plastic and oncologist), 2 anesthesiologists and I had an AWESOME outcome.

I insisted on some sort of anti-nausea drug. There's nothing worse than puking for days after surgery! My plastic surgeon prescribed Emends 40 mg, 3-4 hours pre-op with just a sip of water. I also had Compazine (suppository) and will ask for the same 2 again if I need any further surgeries.

NO nausea after 6 hours of general anesthesia! Plastic surgeon injected pain meds directly into my 3 incisions, and literally, I was only "uncomfortable", not in pain, from the drains. This was my most extensive surgery and the BEST by far. I'm back at work full time a week later (I still have 40 staples in my head).

Please be your own advocate and don't settle for "everyone gets sick after anesthesia". I now know better and will expect nothing less!

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Dynasysman's picture
Replies 5
Last reply 4/22/2011 - 2:40pm
Replies by: EmilyandMike, Dynasysman, Anonymous, Carol Taylor

I am 5 months NED after finding melanoma in a lymph node in my left posterior neck. We never found a primary, and I had a left posterior neck lymphadenectomy (36 nodes out) last December. So far so good.
Last September, my noise started running. This problem has gotten worse over time, to the point where I have a pretty much permanent post-nasal drip, hacking cough, and can't get more than 4-5 hours sleep at once (not a good way to fight cancer!). My ONC is fairly sure thue problem isn't allergies, but cannot offer much help on what it is.
I know that my issue is pretty small compared to what many of you deal with, but I worry about how to keep fighting melanoma when I'm always tired and dragging. Plus, my wife cannot get any when we're in the same bed, which stinks for both of us.
Anyone else have an experience like this? Suggestions?

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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boot2aboot's picture
Replies 11
Last reply 7/26/2011 - 8:44pm

Hello Everyone,

I was doing OK with my initial diagnosis of metastic melanoma until i went to see the new ONC...she told me pathology isn't 100percent sure on melanoma diagnosis and leaning towards something called clear cell sarcoma or soft tissue melanoma....so what did i do? yup...researched on the internet...and now, i am in a PANIC...there are NO GOOD EXISTING TREATMENTS FOR THIS...rare, rare, rare...poor prognosis...

no primary site can be found...no pet scan after ct/bone scan mri ordered and my armpit lymph nodes are to be hacked out Thursday...is this TYPICAL????

don't back up, don't back down

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lhaley's picture
Replies 14
Last reply 4/20/2011 - 6:41pm

I've been having stomach pains and had an ultra sound by a local Doctor.  It showed possible calcification of the gallbladder or stones that had adhered to the gallbladder. He set me up with a local surgeon. Meanwhile I sent a copy of the scans to my melanoma specialist to compare. It really irritated me that the local hospital said they had nothing to compare to and I had handed them my scans from 2 months ago.....   Anyway, the surgeon seemed wary to operate on  me because of my history and wanted to wait till my next PET.  Just got a call from my melanoma specialist that they agree that the ultrasound is not clear cut.  They are setting me up with a GI oncologist that is part of their team.   Here's to hoping that this is just a strange way to present gallstones!! 

Linda

Stage IV since 06

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Nabokov's picture
Replies 3
Last reply 4/26/2011 - 9:01pm
Replies by: MichaelFL, nicoli, CKasper

Hi, everyone

I am a writer working on an article for oncology practices, to encourage them to have someone at the office who helps patients understand how much their insurance will pay and tell them about assistance programs available if they need them for their out-of-pocket portion.

Some oncology offices already have such a person. I'm interested in hearing about experiences from patients.
Did you have someone at the practice who was knowledgeable about insurance to talk to?
Was information given to you at the beginning about how much your costs would be, or did this come after you got the bill (and, perhaps, were shocked).

If you would like to respond here, that is fine, but also I would like to interview someone with experience (good or bad) and how the oncologists office did or could have helped you understand things.

Please contact me at marian.wiseman@earthlink.net

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