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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Carole K's picture
Replies 1
Last reply 2/19/2013 - 8:22pm
Replies by: POW

What happened to the post I did earlier about being in chat tonight at 7 PM EST and Dian from spokane and Lucklu couldn't sing in and I was booted. There is no sign of my original post.  What is going on?

Love and Light

Carole K

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Hi Everyone,

I posted I would be in chat tonight starting 7PM EST.  I signed in without problem. Two others tried to sign in and were not able. I was booted  and can't sign on again.  This is very strange.  MRF What is going on ? 

Carole K

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Carole K's picture
Replies 3
Last reply 2/19/2013 - 6:47pm

HI Everyone,

Just wanted to let you know I am sending out an  e-mail to those I have met in chat and others I have known from Chat for many years.  John F, Kyle, Doro, Colleen, Janet, and so many more whose names have escaped me I hope to see you again tonight.  Your stories and your attitudes are amazing,  I just want all of you to find the caring and support I did for many many years.  Let's all try to bring Chat back to what it once was.

I have so many questions for those of you who are on treatment.  There are quite a few new treatments I was not aware of. 

Hope to see you there,

Love and Light

Carole K

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Gene_S's picture
Replies 7
Last reply 2/19/2013 - 6:25pm
Replies by: Anonymous, LynnLuc, Gene_S

Richard Weller: Could the sun be good for your heart?

Our bodies get Vitamin D from the sun, but as dermatologist Richard Weller suggests, sunlight may confer another surprising benefit too. New research by his team shows that nitric oxide, a chemical transmitter stored in huge reserves in the skin, can be released by UV light, to great benefit for blood pressure and the cardiovascular system. What does it mean? Well, it might begin to explain why Scots get sick more than Australians ...

more info at:   http://www.ted.com/talks/richard_weller_could_the_sun_be_good_for_your_heart.html

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

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The MRF is looking for two patients with stage IIIB-IV cutaneous melanoma who are willing to review and provide feedback on portions of a protocol as presented at an ad board for Novartis Pharmaceuticals in East Hanover, NJ.  We woiuld also appreciate patients in lower stages as well.  The upcoming advisory board will be held on February 25th.  The meeting start time is 11:00 am and will end at approximately 3:30 pm.  Participants are welcome to come to town the night before and stay at the host hotel which is the Hilton Parsippany.  All travel expenses will be reimbursed.  Please contact Torrey Shallcross at tshallcross@melanoma.orgif you are interested in participating.

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buckytom's picture
Replies 5
Last reply 2/19/2013 - 2:28pm
Replies by: Anonymous, jeffjohn78, audgator, alabama girl

After having a neck dissection my doctors (including specialist from Mayo) believe that I should go thorugh radiation - 5 treatments over the course of 2 1/2 weeks. I know the docs have to give you the list of all of the side effects - has anyone here went through this radiation therapy - and if so what were your side effects? Any suggestions on how to eleviate them?

Thanks!

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Newmom's picture
Replies 2
Last reply 2/19/2013 - 11:31am
Replies by: Newmom, Becky

Is it normal to have moles on the gum?  I realized that a mole appeared on the gum of my 6 year old daughter.  It is small but I read it is better to have it removed giving its location.  I am taking her to have it checked this Friday but just want to see if anyone here has any thoughts or experience with this.  Thanks.

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sharmon's picture
Replies 2
Last reply 2/19/2013 - 10:43am
Replies by: DonJ, Anonymous

I need to know if anyone has an opinion on Temador for Brent. 

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Anonymous's picture
Replies 3
Last reply 2/19/2013 - 10:30am
Replies by: DonJ, DeniseK, Phil S

Unfortunately 2 1/2 NED for my husband has come to an end, and we are facing this battle again.  A swollen lymph node and routine chest xray revealed more mel with 3 tumors measuring up to 2.9cm ea in one of his lungs.  Next week he will having scans done to get the whole picture, and I know I should probably wait until all that information comes in, but based on what we know so far I am trying to understand what we should expect.

They have tested him for BRAF.  Do they typically do surgery to remove tumors on the lungs regardless of BRAF status or will that depend if there is any other involvment and/or what treatment is available based on his BRAF status?

What kind of recovery time is expected with that surgery?

What are the best treatment options out there right now?

Is there anything else I should know while looking into options?  He did one month of interferon so does that disqualify us from trials?

I know that is a lot of questions.  If I had gone with him to this appointment this week, there wouldn't be so many.  ;)   Thanks in advance to anyone who can offer input.

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kenpochick's picture
Replies 18
Last reply 2/19/2013 - 10:27am
Replies by: kenpochick, DonJ, Anonymous, Tina D, POW, Janner, Phil S

Hi.

 

New here.  My X husband just told me he has recurrant melanoma.  I had pointed out the lesion on his face probably a year ago and bugged him to get it looked at.  He had it removed and said they got it all. 

He had surgery again later because, he said, there was a hair follicle that was causing it to seep and they needed to go back in and remove it.  Turns out he was lying.  He does that a lot -- thus why I'm researching.

Turns out it had come back.  If I have all the information, which I likely don't, then he has had a third surgery to remove a lesion on his back two weeks ago.  The doctors have removed some lymph nodes (no idea size or if swollen).  Doctors wanted to remove a cluster, but he said no because he didn't want lymphedema.  (I have lymphedema post-Hodgkins) 

He has tried interferon, but it hasn't worked.

He says his white blood cell count is way down and his liver functioning and kidney function is out of scale as well.

He is an alcoholic and has been for about 7 yrs.  He's white, has the skin tone of a redhead, got burned a lot because he refused to wear sunscreen, is overweight, and eats badly.

He said he was given 6-12 months as a prognosis.

His health insurance lapses in a month because he lost his job, in part from taking time off for treatment and feeling bad.

He said sometimes he's in pain (from the cancer moving through his lymph system, I'm guessing) and other times is fine.

His father died from melanoma that had metastisized into his kidneys.

This is the info I have.  I'm stressed about the whole thing.  So is he, of course.

If the interferon doesn't work for him, is there anything that might?  Mind you, he is largely unwilling to change his diet or his mindset. Or stop his drinking, since he hasn't so far.

Does the fact it moved to his back mean that it's now moving through his system?  I don't know if it has affected his organs or not.

I gotta know what to tell the kids and when would be the best time.  He's hugely depressed, of course.

Thanks for any assistance you can give.

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Janet Lee's picture
Replies 6
Last reply 2/19/2013 - 10:21am

Hello all.

Aftger countless hour and countless tears, insurance still refuses to pay for Zelboraf for my husband, soley because he is BRAF V600R instead of BRAF V600E. I now have to let this go, at least for a little while, to concentrate on fighting his disease and not the insurance company. I would however love to know how many of you out there are NOT BRAF V600E and still got the Zelboraf? Are other insurance companies paying?

Back to Dana Farber tomorrow (Friday 2/15) to start Yervoy/IPI. Side effeccts are scary. Prayers that Don responds to Ipi are more than welcome!

What else should we be thinking about in terms of treatments? We have put our trust in Dr. Ibrahim at Dana Farber, but I need to know about alternatives to ask her about.

Thank you all for your knowledge, help, support, and love.

Janet

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kwb's picture
Replies 4
Last reply 2/19/2013 - 9:41am
Replies by: DonJ, NYKaren, BethA in VA, scots

Today is the one anniversary of my Stage 2, Clark's Level V melanoma removal from my upper-back.  Doctors removed about a tennis ball-sized amount of tissue, then had to go back in about a week later to "clean up" the margins.  I had a 3.5 inch by 6 inch skin graft from my thigh to cover the "flap" created by the plastic surgeon.  I'm about fully recovered as far as movement and stamina are concerned.  However, I still get minor aches and pains when I do to much heavy lifting or other activities.  I still can't seem to exercise as much as I used to, and, unfortunately, swimming is almost completely out.  I will see a plastic surgeon in a few weeks to look at the scar tissue (including what's left of my "flap").  It may require an additional procedure.

In February of this year, while still recovering from November's surgery, I had two (2) in situ melanomas removed - one on my upper cheek, the other on my upper back (on the other side).  Needless to say, this past winter and spring were not pleasant for me or for my family.

I hope and pray that everyone who suffers through this disease continues to get better and gets the best possible treatment.

Unfortunately for me, I feel that every visit to the dermatologist is just another "shoe waiting to drop."

 

 

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good pet scan and brain mri yesterday.

only one small spot at suv 3 left. stable from 3 months ago.

zel goes on at half dose, prednisone stopped.

4 years down the road since stage iv diagnosis. Never thought i'd make it that long when it started....

Also never thought my straight scandinavian hair would turn into a beige-greyish version of the haircut of Michael Jackson young.

 

Beatrice stage IV

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Hi all, so sorry to be back. My husbands first diagnosis in 2001 brought me to the board and I

was on often, but over the years I really felt it was OK. He had a chest xray with us thinking

he had bronchitis/pneumonia (coughing, hoarse) and they found a 3.8 x 3.4 lung mass and

several nodules. Also scattered masses over abdomen. They did a biopsy of the lung mass and

found it positive for melanoma. We have an oncologist appt Wednesday. I am terrified. He is 58

we have one daughter age 20, we went to her college yesterday and told her, but downplayed it

so as to not worry her. I am so scared because he seems so sick and because of the stomach.

I have a call in to Sylvester Center in Miami as well where he went the first time - he did a year of

interferon then. But the oncologist has a good reputation as well so I guess we will start there. I

imagine they will do a brain ct to check for brain mets? Primary says they will probably remove

lung mass via surgery. I have a list of questions - what about liver, is he braf positive, ive read

about yervoy and ipi which sound promising. I just want to stop crying. I know I need to be strong.

Thanks for any advice. He is 58 fit and healthy otherwise..

Vicki his loving wife

Never give up!

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dodgedh2's picture
Replies 9
Last reply 2/18/2013 - 6:08pm

It's been 4-1/2 years now since my surgery and stil NED! Onc says that if my next scan (6 months) comes in clean, he will be releasing me to my PC to monitor. No need to come back unless new symtoms develop. I'm still letting it sink in. Can't believe I made it this long and I'll be glad to not have those occurannces of scanxiety every 6 months. I can't shake the thought though that this monster can come back at any time, any place, and without symptoms. I'm sure my next scan is going to be a real trial for my nerves, but I'm praying that I make it with another clean bill of health.

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