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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Arlenellen's picture
Replies 11
Last reply 5/10/2013 - 12:27pm

My husband recently had a SLNB and a right cheek excision with plastic surgery. Although the results said there was no evidence of residual invasive melanoma on his cheek, it also states "residual melanoma in situ in a background of cicatrix. It then goes on to state, melanoma in situ measures0.4 cm in horizontal dimension and lies 0.4 cm from the nearest epidermal edge or resection. All surgical margins negative for melanoma.
The lymph node came back negative for melanoma. I am very confused. Can someone more experienced than I help me understand this? BTW the histologic type is nodual which I understand to be the fastest growing.

Thank you
Arlene

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Gene_S's picture
Replies 5
Last reply 5/10/2013 - 8:37am
Replies by: Anonymous, Hstevens0072, Gene_S, benp

  On the next NaturalNews Talk Hour show this Sunday, you'll hear

Charlotte Gerson talk about how to eliminate cancer - naturally.
 
At 91 years young, Charlotte is simply amazing!  Show details below:
 
If you can't make the show or miss it - here's a little summary of the Gerson Therapy:
 

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

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mama1960's picture
Replies 2
Last reply 5/10/2013 - 6:10am
Replies by: POW, Harry in Fair Oaks

During CAT scans today to map out radiation the doctor mentioned that a lot of the bone been "eaten away". Will the bone regenerate?

It is what it is.

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Location is just west of the beltway  a couple of blocks off  Rt 50.

 

From: "Marsha Komandt" <Marsha.Komandt@inova.org>
Sent: Thursday, May 9, 2013 7:35:19 PM
Subject: Upcoming Melanoma session May 30

For this month’s Quaarterly Melanoma Group session INOVA has three returning  guest speakers joining us for Melanoma Awareness Month.

Attached is the flyer for the Thursday, May 30 date from 6:30 – 8:00 pm.  For planning purposes of room assignment and refreshments, please do register on our website by the day before, Wednesday, the 29th.  Many thanks.

 

For those of you that may have a metastatic skin cancer or melanoma, there are two webinars sponsored by CancerCare in NYC, one tomorrow May 10 from 1:30 to 2:30 for metastatic skin cancer; the other Friday, June 14 for metastatic melanoma.  You may register by calling them at 1-800-813-HOPE (4673) or online at www.cancercare.org/connect.

You can also listen to previous workshops on their CancerCare website by logging on to www.cancercare.org/podcasts.  So if you miss one of the above, you can go into it at a later date.

 

Do hope to see many of you the end of this month.

Marsha J Komandt, RN, BSN, OCN

Oncology Education Coordinator

Life with Cancer, IHS

8411 Pennell St.

Fairfax, VA 22031

703-698-2530

703-846-0924 (Fax)

marsha.komandt@inova.org

I'm me, not a statistic. Praying to not be one for years yet.

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thrashter's picture
Replies 2
Last reply 5/9/2013 - 8:36pm
Replies by: Tina D, kylez

I received the great news of being N.E.D. after my last scan. This info came to me from my surgeon. I have an appointment with my oncologist on Tuesday to see if further bichemo is going to take place. I'm torn on weather to continue(4th) round or not. If i am currently N.E.D. should i submit my body to further toxicity? Also I thought i would be much happier about hearing those words but it seems maybe not to have sunk in. Any others hearing they are N.E.D. and still feeling like nothing changed?

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Anonymous's picture
Replies 1
Last reply 5/9/2013 - 5:45am
Replies by: Anonymous
http://www.MelanomaResources.info

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François's picture
Replies 4
Last reply 5/9/2013 - 12:46am

Last week I had the results of the CT scan I had few days before, just after four month on Zelboraf. My oncologist said that 2 lungs nodules have disappeared and one has no significant size. In my groin, where I have been 4 times on surgery, I still have "something" that is 19mm. This "thing" has not changed on my last 3 scan and he said it's probably something that has nothing to do with, otherwise it would have reacted as the other nodules. He didn't even mentioned a biopsy. On the other hand I suggested him to stop the treatment and start a period of on and off to avoid resistance, as I could read on few posts but he said this is not yet clinically proved. I had a seboreica in my left arm for years that has disappeared as well, I find this amazing, because I could really watch shrinking day after day. Next scan is programmed for June last week and I hope been Ned for this day. Thank God and praying every day this drug keep on working on me and to all the people who are in the same situation.

François

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lisab60's picture
Replies 0

I had surgery 2 months ago to remove lymph nodes in my left groin and the primary tumor on my left foot. Right now I have "No Evidnce of Disease". My Dr. Gave me the option of interfuron for 1 year or bio/chemo for 4 months (1 week on and 3 weeks off). I chose bio/chemo. I start treatment on the 21st of may at MD Anderson. Has anyone had this treatment for "PREVENTITIVE" measures? I would like to know what to expect. I know everyone is different but just curious. Thanks.....Lisa

"Bring the Wood"

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Drew N's picture
Replies 4
Last reply 5/8/2013 - 3:01pm
Replies by: Drew N, mzammit, Anonymous, Randy437

I have had my 6 month checkup at MDA and remain NED. That's how it's been since surgery in January 2009. Grateful for each day I get.

Also grateful to live 25 miles from MDA, and for curcumin. I'm convinced of the latter's efficacy.

Peace.

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gail6664's picture
Replies 4
Last reply 5/8/2013 - 12:29pm
Replies by: gail6664, Janner

I am a 48yr old woman that has just been diagnosed with clarks level 4, what does this mean? I had a topical byopsy done which was negative, but was told it was an atypical mole that needed to be checked. Went to a surgeon had it removed, and was told it was a clark 4, went back and had a deeper and wider proceedure done, now waiting for results.

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It was truly an awesome day......walked 3.3 miles with 9 members of my family, even 2 of little grandkids who were only 4 and 5 when Jim passed.  The day was beautiful with beautiful people.  I had donations of $520.00 .....I was so happy for that....met Barbie Girl, Jackie Doss, Margaret Fowler, Cindy Rutledge.....so many people who have lost loved ones way too early.  I walked for all our Angels and for all warriors still fighting....Hugs to all of you. Thanks to Catherine Murrray and Kyle Clarke......

Take Care,

Sherron, wife to Jim FOREVER!

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I have been approached by a journalist from Bloomberg who was ts to speak with patients who have been on a trial for a PD1 or PDL1 drug. If you are interested please email me offline at tturnham@melanoma.org

Thanks

Tim--MRF

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flvermonter's picture
Replies 1
Last reply 5/8/2013 - 8:13am
Replies by: michelleaudie

Hello Again,

 

We just got the call from Moffit for my husband's appointment with the dr as a follow up to his CT and biopsy to take place tomorrow and Thursday.  The follow up with the Dr is 5/20.  Is it me or all appointments going to take forever for testing and then readouts.  Just find it so important and makes it more frustrating than it should be.  Thoughts?

Hugs to all, patients and care givers.

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Hi All,

Scott has an appointment on Friday the 10th at MD Anderson. 

He has not had a scan since his IPI or WBR.  I am wondering how this is going to work.  It seems more logical to have the scan and then the appointment, but I have been told this is how it's always set up.  

If the brain scan is bad, won't that throw everything out the window? He's already had IPI and is taking Temodar.  If those didn't work then it seems like SRS or Cyberknife is the only option and then he would most likely be treated for that at home.  Am I wrong in thinking that or is there more information that I don't know about?

He was told that he will be treated as an outpatient for 2-3 days, so we may have further appointments on Monday and Tuesday. 

If anyone remembers the details of their first visit please let me know.  I'm anxious about the whole thing and patience is not one of my virtues.

Thanks, Lisa

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flvermonter's picture
Replies 2
Last reply 5/7/2013 - 7:56pm
Replies by: flvermonter, hbecker

Hello,

 

My husband has been diagnosed with stage iii cutaneous melanoma and is having a ct tomorrow of his liver.  Then on Thursday he has a CT and biopsy on his right lung.  THe petscan taken a couple of weeks ago showed a spot on the liver and one on the lung.  I have put a bio out there of his history if that helps.

We are in hopes it is only a spot and not more cancer.  I am curious about the lymph nodes and if that is what aided the cancer.  He has had cellulitis in his legs before from swelling, and a couple of colds back a few months.  I have read in the other emails that with weaker lymph nodes, cancer can spread quicker.  Albeit i am a novice here reading and learning what I can. 

 

Also, he had a stomach flu or something last week and again last night/today.  He almost never gets a stomach flu, even when he is nervous.  I think 2 times in one week is more than a coninsidence.  COuld this be from the cancer?  Should I call his doctor at Moffit and let them know?  I ask, as he seems to feel better and no fever with it.  I know if he has a fever, they will cancel the Thursday biopsy and we will have to wait again. 

 

Sorry for so many questions and such, but finding my way here.  Thanks in advance, Mary

Hugs to all, patients and care givers.

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