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
Shelly in Switzerland's picture
Replies 4
Last reply 4/29/2011 - 2:11am
Replies by: Kim K, Phil S, Cate, lhaley

I have been so out of it for the past month.  bedridden, throwing up, double vision, siatica nerve in bsck snd neck with seizures.... 

Anxious for changes!  This week everyday there have been imptovments.  Today I sat at the dinner table with my family!  a major triumph!

MRI showed radiation it has shrunk the 2 large tumors. No new growth on the chest tumors from before.   Now we wait for a month and see if more it dies, ince I am seeing healthy improvements now.   (Last 4 days I have seen improvements with my left side!)

 Today has been another successful day!  Whoa!  A trip in the car to the doctors appt, sat at the dinner table for the first time in a month with my family; and George, Dad, and Lisa, along with our friend Alwyn helping interpret a tour of the Lukas Klinik and a Hospic im Parc facility in Arlesheim (all just trying to learn about options… but after today’s news not necessary for awhile.

 Today’s’ plan is that we will wait one month, stay on the Braf, reduce steroids, start the Linac (STS radiation), wait for more shrinking… then try the Iplimumab ( Yervoy).  Lots of investigation still to do...




Login or register to post replies.

flynn's picture
Replies 1
Last reply 4/28/2011 - 4:57pm
Replies by: Anonymous

Has anyone heard of this place in the Bahamas? Any takes on it?         - here's what they say..

"At the Immune Augmentative Therapy Centre we have been working to find the best therapies available to restore your immune function since 1977. Lawrence Burton Ph.D. opened the IAT Clinic in Freeport after his many years of successful research therapy in the USA on the immune systems of hundreds of terminally ill cancer clients".

Login or register to post replies.

jag's picture
Replies 14
Last reply 5/3/2011 - 9:03am

CT of Chest Abdomen Pelvis all Clear

MRI all clear

I feel like a little kid again getting excited by numbers going up!

Hang in there and Fight Fight Fight!

Insert Generic Inspirational Motto Here

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 4/29/2011 - 10:11am
Replies by: King

Well this past Tuesday Brent started his new MEk trial at MD Anderson.  He was on  GSK Mek for 14 months and started to progress.  So after a mistake in the insurance approval, and not getting the right information about B-12 and folic acid prior to starting the trial, he finally started.  He is on MEK/Alimta combo trial.  Alimta is a drug approved for lung cancer that they are combining.  He feels well today but is sleeping more than usual.

Sharon and Brent (stage IV)

2007 Melanoma under toe nail and lymph  nodes in groin

2009 Stage IV in lungs

Login or register to post replies.

Alanfph's picture
Replies 8
Last reply 4/28/2011 - 2:48pm

I have had 2 melanoma findings in the past 3 months.  I have a teriffic doctor and he caught them early, both were Stage I (back and leg).  I went for my 2 month checkup and they found 7 moles that are suspicious.  Biops. were taken and I am waiting on the results.  They said this is very rare....but said no more then that.


Does anyone have any thoughts?


Login or register to post replies.

I have had 2 melanoma findings in the past 3 months.  I have a teriffic doctor and he caught them early, both were Stage I (back and leg).  I went for my 2 month checkup and they found 7 moles that are suspicious.  Biops. were taken and I am waiting on the results.  They said this is very rare....but said no more then that.


Does anyone have any thoughts?


Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 4/28/2011 - 1:53pm

Can your health insurance cancel your policy if you move out of your state (just across the border) and the state would be NY

Thank you.

Insert Generic Inspirational Motto Here

Login or register to post replies.

shellebrownies's picture
Replies 15
Last reply 4/30/2011 - 7:17pm

We're about  4 weeks out from Don's biopsy/lymphectomy and this morning he got up and his right arm was swollen. He said he was a bit more sore than normal also. It's important to note that he is not yet receiving any treatment for the Melanoma because they are still staging him. (He goes for repeat PET on Friday 4/29 and his next Onco appt is Friday 5/6)

He just saw the surgeon last Friday because he was having on and off bouts of increased pain. Surgeon had said everything looked good, no sign of infection, and he removed the rest of the Steri Strips, which did seem to help with the pain. We thought everything was moving along fine.

We called the onco, who thought after talking with my husband that it is most likely Lymphedema and we should look into getting him a compression sleeve. The surgeon's office is getting back to us in the morning about it, but the surgeon didn't seem too concerned (not concerned enough to have him come back in).

My questions are these: How do we know if that's what it is? What are the common symptoms (other than the swelling)? What can we do to make it better/go away? Is he going to be stuck like this forever and will it affect other possible treatments in that area? Will it affect his PET scan on Friday if it's still swollen?

Any information anyone can give would be very much appreciated. Thank you!


Michelle, wife of Don, Stage IIIC (for now)

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

Login or register to post replies.

Erinmay22's picture
Replies 9
Last reply 4/29/2011 - 2:17am

March 1stI had melanoma confirmed in my lungs.  For the last 6 weeks I’ve been trying to get qualified for a B-RAF trial.  The good news is that I found out (thru a whole list of waiting and errors) that I am + for the mutation, but my April scan didn’t show enough “active measurable growth” to qualify for the trial.  Now I know I should be doing some sort of happy dance for that statement – but I guess my guard is still up!   

So now I am back at square 1 (again…) What do I do for treatment?  My doctor even suggested maybe watching and waiting since it appears that most of my lungs spots have just disappeared?  Were the rest of them maybe an infection and the 2 out of the 12 they biopsy just happen to be melanoma?  Or is it that my body is fighting it?  It’s so confusing… and now I sit and wait again.  Perhaps they will try Ipi/Yervoy?  I don’t see my doctor for a few weeks.  My scan results are listed below as information 

4.19.11 Scan: Lungs – Status post left upper lobe and left lower lobe wedge resections of pulmonary nodules, biopsy-proven to represent metastatic melanoma.  There has been interval resolution of all additional subcentimeter pulmonary nodules, with the exception of a 3 mm right basilar lesion, and a subcentimeter right basilar granuloma.   

Everything else was listed as stable from my previous scan with the exception of new small bilateral adnexal cysts and stated no new evidence of metastatic disease. 

1.13.11 Scan: Lungs – all stable scattered subcentimeter pulmonary nodules are identified most of which measure 0.2 to 0.3 cm.  The largest seen posteriorly at the right base measuring 0.4 cm.  Calcified granuloma right base lung.  Impression states: multiple bilobar scattered subcentimeter pulmonary nodules.  Although there is evidence of prior granulomatous disease within the thorax and some of the lung nodules may be related to this process, the multiplicity (my doctor stated there were over a dozen spots!) of nodules raises concern for metastasis.   



Erin "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

Login or register to post replies.

Tracy Chicago's picture
Replies 4
Last reply 4/28/2011 - 6:12pm

Hi everyone! I just wanted to remind anyone who is feeling depressed or hopeless about melanoma that there are so many melanoma survivors out there beyond this board (but I do love the survivors on this board :)). Either they don't know about this website or they are just off enjoying life so they don't come here to post, but they do exist and they exist in masses!

I know several melanoma survivors (Stages 3 to 4) who have been around for 10 years of more after winning their battle with melanoma. They aren't people I've met through this board; they are people I met when I received my stage 3 diagnosis 3 years ago and I began that long journey of researching all the details about melanoma. It's hard to think positive, but remember that some lucky people do survive for a very long time and you just might end up being one of those lucky ones!



Login or register to post replies.

LampChop's picture
Replies 11
Last reply 4/28/2011 - 1:49pm

I've been looking for a cancer support group of young moms or young women without children.  I'd love to chat with others for whom a cancer diagnosis has halted their ability to start or grow their family.  Anyone on this board that is in a similar situation to me?  I'm 38, Stage IIIB with strong recommendations from many doctors to avoid becoming pregnant again (which I have decided to abide by).  I have a 2 year old daughter.


Login or register to post replies.

mrsmarilyn's picture
Replies 3
Last reply 4/27/2011 - 5:06pm
Replies by: dawn dion, lhaley, MichaelFL

Hello-My brother just received good news- 10-12%  reduction in the two remaining tumors, based on todays results of PET CT Scan!!  Currently his liver enzymes are elevated to level 1 - not sure what that means.  Also continuous high fevers and chills.  But his trial dr. said to keep going on current doesages.   Anyone else with that side effect-and please check in with any updates on this trial.  We are looking forward to throwing NED party hopefully soon!   Thanks again for all your help-and lets hope this good luck continues.

Love and best wishes to all.


sister of Gary (stage IV)

Login or register to post replies.

RMcLegal's picture
Replies 5
Last reply 5/23/2011 - 2:03pm
Replies by: RMcLegal, Carol Taylor

May is just around the corner and it's almost Melanoma Awareness Month.  Join me in celebration, with some new lyrics to the Eagles' "Desperado".

Login or register to post replies.

kbc123's picture
Replies 4
Last reply 4/28/2011 - 9:22am

My newly diagnosed melanoma (3a) is giving me a bigger headache!  Took my son to dermatologist for his "body check" because of his momma's diagnosis.  Doctor took two not so cute moles off, told me dont worry they are really nothing to worry about and to call in a week.

Dr. office calls last night and tells me that they are compound melanocytic nevus' and that he needs to be watched more carefully now.  Also that the only thing we need to do is watch the area and to make sure that no pigment grows back.  Does that sound correct to all of you warriors out there?  I am sick to my stomach about it however, thanking God that I am taking my kids for this yearly check up and catching whatever may be a problem.

I have a path report and can give more info if needed.  It does also say that the 'architectural growth pattern is compatible with dysplastic melanocytic nevus.  there is mild cytologic atypia of melanocytes'


Login or register to post replies.

boot2aboot's picture
Replies 8
Last reply 4/27/2011 - 2:18pm


i need all your experienced help asking the ONC questions about  the tumor taken out of my armpit(in earlier posts)...the office called today to give me the news and i haven't called back until i am READY...i read the brochure thingy on this website and of course other stuff on internet and info the hospital sent me home but i still have WIDE gaps of knowledge... i still have, i read some tumors are hormone receptive and i still don't quite understand things like'mitotic'...and still trying to decifer BRAF and DNA analysis...and on and on...i know i am to hook up with a medical ONC practising with my surgeon and they have already planned immunotherapy for me..i also know i get 'scanned' in 3 mos again..but right now i just need to understand status and pertinent quesions I SHOULD BE ASKING NOW

thank you for your help


don't back up, don't back down

Login or register to post replies.