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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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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Shelby - MRF's picture
Replies 1
Last reply 6/21/2011 - 9:09am
Replies by: Carol Taylor

I just wanted to thank you for reviewing your doctor(s) on Avvo.com in May.  Because of you, Avvo donated over $4,000 to the MRF!

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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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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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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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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 Thorocotomy...now "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.

Thanks,

Alan

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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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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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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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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

Hi,

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
Anonymous
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 support...is 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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