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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ChrisTheWilsonZoo's picture
Replies 1
Last reply 6/20/2011 - 9:57am
Replies by: Carol Taylor

Public service announcement appearing on the Style Network.  Worth taking a look at, it is blunt and to the point.  It uses both words and imagery quite effectively.

Personally, I would love to see it on prime time on the major networks! 

"A little ingenuity and a lot of duct tape will solve many problems.", AKC Agility Judges Guidelines

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shellebrownies's picture
Replies 7
Last reply 7/1/2011 - 12:16pm

Don goes in tomorrow morning for his next Chemo treatment. Hoping and praying for continued success!

Michelle, wife of Don

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

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LynnLuc's picture
Replies 18
Last reply 10/2/2011 - 4:00am

Two years ago yesterday I had my biopsy at Mayo Clinic and they told me I had stage 4 melanoma. They also said I would be dead in 6-9 months. Happy to report I am still here and still NED. Had my latest scans on June 8 and my booster of MDX 1106!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Al In Kansas's picture
Replies 22
Last reply 7/10/2011 - 1:23pm

Lab results from a mole removal say:  Malignant Melanoma, Superficial Spreading Type, Clarks Level II, Breslow Thickness 0.4 MM, Margins Negative.

More details are in my profile.

I'm not having much luck finding Doctors in Kansas that Specialize in Melanoma treatment.  If anyone has a recommendation for a DR. in Kansas it would be appreciated.

A friend has advised me not to mess around and just get to a research facility.  Is that sound advice?

From the list provide here at MRF the University of Colorado Cancer Center is the closest but I haven't found a Dr. Specializing in Melanoma.  How important is that?

M. D. Anderson, Mayo and St Louis University School of Medicine are all about the same distance for me to travel.  I have a daughter living in St Louis so leaning towards St Louis University.  Has anyone here been treated there?

Any and all advice will be appreciated.



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Gene_S's picture
Replies 3
Last reply 6/19/2011 - 9:37pm
Replies by: LynnLuc, Anonymous

Here is an article from my local newspaper about a teenager dealing with Spiral Cell melanoma.

It is also an inspirational story...  see:

Best wishes,

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lyndaloo's picture
Replies 6
Last reply 6/19/2011 - 10:22pm

Hello - my husband had a craniotomy last month for a tumor causing weakness on the left side, the surgery was a success, two weeks later he had 10 sessions of whole brain radiation and tomotherapy for the remaining 4 smaller tumors. Now that he is finished the radiation he is tired and nauseated and has a rash across his forehead, he just lost his hair the other day. His doc wants him to wait a month to "recover" and then restage him. The nurse said the doc is excited about a new drug starting with a "V" which I believe is for BRAF.  Apparently there is a study starting soon. Has anyone experienced the rash from the radiation and what are people' results with BRAF?  Thank You.


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ockelly's picture
Replies 3
Last reply 6/20/2011 - 12:35am

Wanting to be sure my husband is taking the best supplements to potentially prevent a recurrence.  He is taking D3 5000iu, CoQ10 300mg,  Green Tea and Turmeric.  I am wondering if anyone has had a recommendation on Turmeric or Curcumin dosage or a high concentration brand of supplement?  He is taking Gaia brand... 1 capsule is 480mg Turmeric root (36mg of Curcumin).  Also, how much CoQ10 should he be taking?

Any other suggestions.  He is currently in month 5 of Interferon tx.



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Lauri England's picture
Replies 6
Last reply 6/28/2011 - 2:09pm

I am now into my 9th month of Interferon.  I had a shot on Friday night and about 5 hours later I was up throwing up and ached from head to toe.  I also had a severe headache.  I was then sick the whole next day running a low grade temperature.  I took Tylenol and the fever would go down but about 4 hours later the fever was back.  This was one of the worst shots yet.  I hope this does not stay like that with each shot.  It seems to get worse as time goes on.  Still NED at this time so the shots are worth it so far.  I have a Dr appt beginning of next month.

Don't sweat the small stuff. There are bigger fish to fry!

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Vermont_Donna's picture
Replies 3
Last reply 6/23/2011 - 8:05pm
Replies by: boot2aboot, ValinMtl, lhaley


Earlier this year (March) during a visit to my fantastic lymphadema specialist for a "checkup" she pointed out that I had lost some muscle mass in my right calf muscle. Hmmm, I had not noticed that. Started working out and my personal trainer gave me some exercises to build the muscles back up (havent seen any improvement yet). Saw my radiation oncologist for a "checkup" and he answered my questions about why was this happening with explaining that this was a side effect of having radiation, not once but twice to my leg (different areas, basically my whole leg has been radiated AND I had a ILP two years ago).

So fast forward to June, my right lower leg looks like a skinny stick compared to my left leg and my compression stocking ($600 out of pocket expense as my insurance plan didnt cover it, and I got it new earlier this winter) is hanging off my leg. I have now gone to the pharmacy and bought a thigh high, 18mm compression, which seems to fit ok, and actually feels better as my compression stocking is the pantyhose type, going halfway down my left leg and full coverage on my right.....its hot and uncomfortable in the summer months, but I have worn them for the last 5 years. Til I can speak with my lymphadema specialist this is what I am wearing.

I also have right foot and right calf neuropathy, ALMOST to the point of not feeling the gas or brake pedal...but not quite, and believe me when that day happens I will get my car fixed with hand controls. My dad also had to do this for his health problems so I know all about it. I can no longer wear shoes or sandals that dont have a back on them or a strap. Ok I can deal with all that. My right leg is now weaker than my left, understandably so, so I am working on doing those exercises but sure would like to see some improvement. I plan to go see my radiation oncologist to revisit this issue again.

I am just curious if others have experienced this side effect from radiation or ILP?? I am also still doing well as a "complete responder" to Ipi and am returning to work soon at the mental health agency where I have worked the last 12 years.

Vermont_Donna, stage 3a NED

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Anonymous's picture
Replies 7
Last reply 6/21/2011 - 4:10pm

Hello all!  A relative of mine was just diagnosed with metastatic melanoma and our family is trying to put together a care package to send to her.  I was going to fill it with Eucerin lotion (sensative skin), chap stick, mini travel games like scrabble, magazines, preggo queasy lollipops, peppermint tea (for nausea), lemon drop candies, soft toothbrush, sensative skin baby wipes, germ-x wipes....what else could I put in there?  They start IL-2 treatments next week and being so far away I really want to let her know we are thinking of her...I also plan to send up mini care packages for the next treatments...I want to show continued there anything else that you could help me add?  Thanks so much...and any advice would be greatly appreciated!

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ValinMtl's picture
Replies 13
Last reply 6/19/2011 - 2:17am

I'm planning (as in hoping) to find a trial that would include IL-2.  Came across a comment recently that said, IL-2 is not a good option if compromised from the ILP, LND and lymphedema. The toxicity could pool there and necessitate amputation, or could cause death.  I have not had an ILP because lymphedema was bad in my right leg, exactly the location where my sub-qs (growing daily) are located.  Has anybody heard this, any thoughts would be much appreciated.  Val, stage IV, failed ipi, looking for new trial

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KevinM's picture
Replies 6
Last reply 6/18/2011 - 6:49pm


Great video!! So happy for are a true inspiration! I am hoping to jump with my son later this summer!

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Hi all,

I'm from BC Canada. I'm looking for others in my area. I'm also looking for all the latest up-to-date info on Melanoma and treatments etc. My biggest concern is that I'm not getting the closest follow-up that I may need. I was diagnosed with Melanoma in March of this year. It was on my right calf. I had a flat mole there that was about 5-6 mm - not round but not too wierd looking. I noticed that I had to be more careful shaving my legs last December as the mole was more raised. Then by the end of December I was catching the razor on it. I didn't think too much about it until January, when a skin coloured "tumor" started to grow on one half of the mole. I knew I had to have it looked at but was "too busy." I finally had it looked at mid-February and my family physician removed it and 2 other fast growing moles. I didn't think anything more about it as my doc didn't seem too concerned. I got the "phone call" March 10th. It was a Nodular Melanoma Clark level IV and Breslow 2 mm Mitosis <2/mm. I had a wide excision and sentinel lymph node biopsy March 31. The surrounding tissues and lymph nodes were negative putting my staging at IIa. The other 2 moles were benign. I also had 3 Clark's nevi removed in May. My surgeon, who specializes in melanoma, wants to take more tissue from around the nevi removed from my back.

My concern is that I'm wondering if they should have been doing CT scans or anything else to make sure I didn't have anything else going on. I feel I'm a little of an oddity as my surgeon said usually older males have this type of melanoma on their scalp or shoulders from too much sun exposure. And everyone that knows me, knows that I don't go out in the sun much. Since I was pregnant with my 12 yr old daughter, I've been heat intolerant and always sit in the shade. I'm the one under the umbrella at my daughter's soccer games. And not when it's just raining either. My legs have really never tanned or even burned, but I'm fair haired (naturally that is), green eyed, have more than 50 moles (more like 50 per sq inch - lol), and burn rather than tan. I use 50 sun screen. But I also grew up in the era of no sun screen and playing outside in the sun all day when I was a child. Had plenty of very bad burns - but not on my legs. Go figure.

I would enjoy hearing from everyone and look forward to meeting more people in my position. I know I'm one of the lucky ones but also know I have a life-time of vigilence ahead of me.



Live life to the fullest. Laugh lots. Love deeply.

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Gene_S's picture
Replies 2
Last reply 6/19/2011 - 1:49am
Replies by: Anonymous

I know that many of my fellow online melanoma family members are running out of treatment options and I want to share the following email response that I received from a Yahoo forum group that I belong to.  His solution is NOT a ENDORSEMENT from me but just a possible lead for another treatment option.

--------------------------------- email below ------------------------

Date: Wednesday, January 5, 2011, 1:35 PM
Hi,  My wife had repeated melanoma outbreaks on the side of her face for about ten years, surgery each time finally resulted in disfigurement and partial paralysis. I ran across a doctor who cured himself of Stage IV melanoma eleven years ago. I wanted NO MORE surgery on her!  He now offers his treatment, not chemo, no medicare, but not expensive either. We went to him two years ago and she has been clear so far. A wonderful person, Dr. Cantrell is in practice in Brentwood TN. Website Check him out.   Bill


Note, the best part is his "cure" rate for stage III and stage IV melanoma's... again NOT an ENDORSEMENT but just sharing some of my research info that may benefit my fellow online melanoma warriors! 

Best Wishes,


Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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CAdesiree's picture
Replies 7
Last reply 6/18/2011 - 6:06pm

i have posted a few times... first w questions, then the pathology for my initial biopsy.  but now, i am as scared as my first post. i already knew i wasnt happy w my derm.  i am seeking a second opinion w a oncologist, that appt is the 23rd.  so today i had stitches removed from my reconstruction (after MOHS) at the original derm's office.  i also picked up my records for the second opinion... and they have ALOT of incorrect info.

the first thing i noticed was the antibiotic.  the day the derm did MOHS (may 31st) he prescribed Cipro as my antibiotic, to be taken starting the morning of reconstruction (june 3rd).  my records say he prescribed Keflex.  i called the pharmacy they say usually keflex would be the more appropriate antibiotic, but call my derm.  the pharmacy also stated the original prescription was always for cipro, that i took.  i didnt call the derm... they already messed enough up.

but then i continued to check records... i had told the derm that lesion had scratched open a few times bc it was itching.  i told him i wasnt sure if he would consider that ulceration, he said no.  my pathology for biopsy, i think, says no ulceration.  but in my records it says ulcer marked on the picture of the body where my lesion was... confusing.

then, im listed as a non smoker... which today i agree with. but i smoked my last cigarette on may 30th, the day before the MOHS.  and the last time i spoke w derms office was june 3 for reconstruct... how did they know i actually quit? and i dont think that would have even bothered me if the other stuff was right... i probably would have assumed they just had faith in my quitting.

also, the records claim they gave me antibiotic ointment for wound care... i didnt.  i assume that went to one of the staff for their personal use.

after the physician asst at derms office removed stitches he wanted to biopsy more, i refused... will wait for second opinion dr.  but he also stated that he wasnt worried about the moles i pointed out that came up since my pregnancy w my daughter (3yrs ago) bc they were not dark enough.  said they are only concern if dark pigment.  but isnt it possible for melanoma to not always appear dark???

and after all this... im supposed to trust they really got it all??? has anyone ever heard of anything like this?

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