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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Hi MPIP Community!  I just wanted to let you know that we will be holding a free volunteer training next month in Denver, CO (July 23-24th). This is an opportunity to come out and meet others in CO who have been affected by melanoma, and are interested in getting involved in our volunteer efforts.

We will be covering, among other things:

  • Fundraising strategies
  • Advocacy 101
  • Working with the media

We recently held a very successful Legislative Hill Day, where we brought volunteers to Washington, DC to meet with their Congressional reps, asking them to support the Tanning Bed Cancer Control Act, introduced by Congresswoman Maloney. Since our Hill Day, five of the members of Congress our volunteers met with have indicated they would cosign. We are very excited about this, and look forward to engaging our volunteers in more and more advocacy work on both a federal and a local level.

This training is a good way to get started if you have an interest in helping us with this effort.

The training is free, and anyone coming in from outside the Denver area will have hotel accommodations provided for them. We can also reimburse for some travel expenses.

You can read more about it on our calendar: http://www.melanoma.org/get-involved/melanoma-messengers-training-denver

Or, please feel free to call me: (202) 347-9675, or email me at: volunteer@melanoma.org

I hope to hear from you!

Best,

 

Mary Mendoza

National Director, Volunteer Services

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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.

http://www.melanomaresearchalliance.org/resources/resources.taf?cat=style

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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TracyLee's picture
Replies 14
Last reply 6/20/2011 - 8:37am

Hi y'all,

2nd Ipi transfusion today. Can't come a moment too soon. My neck is a landmine of lumpy nodes, and the left (good) side is now popping nodes too. I'm prayerful that this means Ipi is already kicking melanoma's butt!

This has been a rough week, 2 migraines this week. Can't tell if just "normal" migraines, which I haven't had at all since my surgery 2 months ago, or an Ipi side effect.

Anxious to move on and get this done!

I know several are getting treatments, scan results, etc. I pray for each of us to have nothing but good news and positive outcomes.

TracyLee

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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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.

Thanks

Kelly

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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.

s

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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,
Gene

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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 www.neoplas.org 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,

Gene

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

Jane,

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

http://www.wmtw.com/news/28269352/detail.html

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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.

Nic

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

Hello,

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,

 

Allen

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