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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TracyLee's picture
Replies 8
Last reply 6/21/2011 - 8:39am

Hi y'all,

Second ipi on Friday. So far, it's been smooth.

My neck is VERY lumpy with nodes. I choose to believe they are shrieking "no, no, I"m dying" as ipi kicks melanoma's butt!

Other than some moderate sleep issues, I'm feeling well. Husband is still having issues (ear infection now), which makes me smile. Who's the sickly one?? He's basically been sick since Memorial Day!

Praying that everyone who is doing ipi, scans, IL-2, interferon, etc has excellent news and no side effects. We can do this, YES WE CAN!

And, as a side note, I really enjoy the "small" stuff a lot more these days. Ballet recitals, kids starting their first jobs, Father's day. I'm just happy to be here for all of it.

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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EricNJill's picture
Replies 16
Last reply 6/21/2011 - 8:05am

Eric has been losing the loss of his legs and so his Oncologist sent us to the ER last night.  We came home so he cold be comfortable.  He has multiple bilateral cerebral tumors that are hemorrhaging and several cerebellum tumors that are also hemorrhaging. He also has a spinal tumor at C7, T7, and T8 and the cancer in the vertebrae that they found on Wednesday has gotten worse and is putting pressure on his spinal cord now. He has been sent home with Dilaudid so that he can be free of pain as the swelling increases in his brain. These tumors can not be treated with surgery and with the extent of his disease, radiation would also not be suggested.  Please continue to pray for us all.

JillNEric in OH

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Hope Returning's picture
Replies 3
Last reply 6/21/2011 - 2:41am
Replies by: Julie in SoCal

Hi, I want to ask a question regarding the Angeles Clinic. If possible please contact me.

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mom3girlsFL's picture
Replies 14
Last reply 6/20/2011 - 3:38pm

I don't know why I keep putting off things my gut keeps telling me to say.  You would think after having been through the melanoma experience you would say what you need to say, when you need to say it.

I have followed your story behind the scenes for a long time.  I have often wanted to log in and send loving thoughts and prayers to you both.  I have watched your videos.  I have cried with you.  I have prayed for you.  I have been encouraged by you.  I have been scared by you.  I have been strengthened by you.

I don't know if either of you could know the depth of emotion you have touched in my heart.  I am sure I am not the only one.  I love you both and have never met you.

I thank you so much for letting me in to your lives through your posts, through your videos.  I have never seen such an amazing couple - the two of you are so truly blessed to have each other.

I am ashamed at myself for taking so long to send this message.

I want you both to know I have been praying for you all along.  I want you both to know you are probably two of the strongest people I have ever encountered. 

Thank you for opening your hearts and lives to me.  You are both an inspiration.  Eric, you are my hero. 

God bless you both.

Laurie 

Do not fear tomorrow, God is already there.

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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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