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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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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debandmike's picture
Replies 7
Last reply 6/19/2011 - 11:10pm

It was April 18 when Mike started his first series of IL-2. All total for the two weeks he got 19 treatments (12 the first week and 7 the second week). We now are taking our next step to see if the IL-2 is doing its job. Tomorrow scans and then scan results on Tuesday, July 21st. Mike has been feeling well and has been back to work for three weeks. We are hoping and praying for the best of news.

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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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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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StevenK's picture
Replies 10
Last reply 6/19/2011 - 2:18pm

Got the call this morning. Melanoma. They excised it a few hours later and now the entire side of my face is bandaged up. The report doesn't say nodule melanoma, but it presented like that. A fast-growing mole out of nowhere. They don'y know the depth because doctor did a shave biopsy. He thought it was something else. Been about 5 months since it first appeared. Doctor says it was very small and a good chance it hasn't spread. I'm not so sure. He screwed up doing a shave. I'm so scared. I can hardly think straight. Is it possible it hasn't spread? - Steve

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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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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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Ashykay's picture
Replies 9
Last reply 6/18/2011 - 9:07pm

Hi there. I am a family member of someone with a secondary melanoma, that
being my Mum. My Mum is 52 and was a "sun worshipper" here in Australia back in her day. Since
then, however, she has been extremely careful with her skin and had it
checked at regular intervals, with nothing ever picked up. After Easter this
year, my Mum experienced significant pain in her right leg as well as pins
and needles in this area. Her GP referred her for an MRI thinking it was a
pinched nerve in the back. They instead have found a 4cm x 4cm tumour at the
bottom of her spine. They believe this tumour to be sitting on a nerve,
hence the pain. Further, it has come back as a c-kit positive melanoma, and
they are unable to find the primary source (it is also not showing up in PET
scans). Further, they have discovered a small tumour at the top of her leg.
All other scans came back clear in other organs, as well as lymph nodes. The
testing has occurred over a period of approximately 3 - 4 weeks, fo which my
Mum is now concerned that doctors have "wasted precious time" in having more
and more tests and her being referred to about 8 doctors! Surgeons have also
passed her off as a no-go, though a 9 month recovery time without having
radiation probably wouldn't have been an option for her anyway.

She has started radiation on these tumours and we (and the doctors) are hopeful that this will
significantly decrease the zize of the largest tumour and eliminate the
smaller tumour. My Dad, family and I are now looking into what can be done
after radiation if the tumour is not entirely eradicated.

The doctors have raised the possibility also (and I suspect due to the absence of evidence of a primary site) that this could be a mucosal melanoma, and is "extremely rare" and not much known/not many options.

I was firstly wondering if anyone else has had a similar melanoma - my Mum's
seems to be extremely rare and I would love to hear from someone with a
similar experience. Secondly, I have heard of Gleevac and some other
important drugs and medical trials which are responding to c-kit positive
mutations of melanoma. We're looking into getting Mum tested for c-kit mutation as well as BRAF mutation. Is anyone able to provide information of someone contactable in Australia, the US, or anywhere really who is a leader in this area?

Many thanks for your help - much appreciated. Feeling a little desperate and needing to hear the voices of others at this time....

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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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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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NicOz's picture
Replies 14
Last reply 6/18/2011 - 5:52pm

I wasn’t going to worry about an update, but I know some others on BRAF inhibitors are interested in how others are responding, so here goes with my 8 week scan results (with a little prelude to further indicate how well the GSK2118436  has been working its magic)

I had scans done as part of the screening process back in April, and at the time I didn’t ask for the results as I didn’t want to know them. I knew it wasn’t good and decided that sweating the details was not going to improve my extended stay in Sydney and chose blissful ignorance- it was MUCH more blissful than even *I* expected... I never expected these scan results in a million years, and I’m a big believer in expecting the worst :P

In the 2 months between MRI’s, I somehow grew over 50 new brain mets, up to 12mm. And they weren’t the “fairy lights” I expected to see on the actual scan. They were like disco balls scattered throughout my brain- I now call them “popping candy”. So that first month of treatment was even more impressive than I originally thought after those 4 week results. ALL of the new ones gone, and 4 of the 5 considerably larger ones shrunk by approx 50%. (That was week 4)

Week 8 showed the following. The 5th and largest brain one (most critical, too- right next to motor area) has slowed and actually shrunk a little. The other 4 remain stable.

Extracranial results went as follows: Adrenal mass gone. One of liver lesions now indiscernable, other 2 larger ones have reduced in size. Axillary nodes have resolved. No new growth. Right butt cheek is still the same- poking it’s tongue out at me for telling mel to kiss my butt cheek for 3 years, I’d guess.

So, after 3 years since diagnosis, I’m finally “STABLE”. I’m happy with stable. Rapt, actually. I know everyone’s chasing NED, but I’ve never been one to go for the ostentatious types. I like the quiet achievers as part of my life, and I'm happy to date 'stable'.

Being fortunate enough to be here to celebrate my daughters 6th birthday, has been an amazing experience. (And being steroid free is an added bonus which I am very much enjoying!) At the moment, though, my thoughts are very much with Eric and Jill and others who are not as fortunate as I am at the moment.


Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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awg's picture
Replies 6
Last reply 6/18/2011 - 5:26pm
Replies by: jimjoeb, Melanoma Mom, Anonymous, awg, Janis B., lhaley


My surgeon mentioned a new(er) Interferon protocol that was different from the 30 day high does followed by 3 weekly injections for 11 months. The protocol was/is 1 weekly injection that has been used(studied in melanoma) for up to 5 years. I do not have any additional details on dose or anything else at this time.

I was wondering if anyone has any information on this protocol. If it is new I like the ideal of 1 weekly injection vs 3 but that may depend on the dose. It sounds similar to an MS protocol to me.

I am scheduled to see my hemo-onc  for my first visit on July 1.


Thank you,



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Anonymous's picture
Replies 6
Last reply 6/18/2011 - 7:34am
Replies by: Lisa13, Drew N, Anonymous, Janis B., washoegal

my mum was diagnosed with melanoma at march.she had a mole at the midle of her back, she took it iff and it was melanome, great news!!!then she had an opperation to "clear" the region of the elanoma and sln at the axilllaries. there was found one lymph with micrometastasis at her left sln and then a full axillary disection was made.she is between iiia and iiib because she had a traumtic and not full ulcerations.the doctores told as that she has to do inerferon but after searchinh we found out that it has many side effects and a small acount of progressive.i am so scared and confuised!is theree anyone with the same expirience....i d like to hear some opions because is so hard to take a desition...


thaks alot and i wish to all of you luck and health..

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Anonymous's picture
Replies 13
Last reply 6/18/2011 - 1:11am

I am sure this topic has been discussed before but was curious on folks thoughts.  I was recently diagnosed with Melanoma and have been practicing sun safety but this past weekend I noticed while out in the hot sun (I've been trying to still live my life) that I missed a few spots with sun screen and have a few red spots where I got too much sun.  Ugh, I've been so careful about putting on hats, sun glasses, sunscreen, layers etc.  Should I be totally freaking out that I am just fueling melanoma (even though last scans showed everything was clear?).

Thoughts on this? 

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Anonymous's picture
Replies 3
Last reply 6/17/2011 - 10:38pm
Replies by: Gene_S, TracyLee

Hi Gene,


I have been off the board traveling so I have lost track of many people's progress on MPIP.

If I recall you had surgery weeks ago, how are you doing & are you having any form of treatment? If so, where.

Looking forward to your update.

Best to you.


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