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 gang. I've been on Social Security Disability for about 5 years due to melanoma. A stage III diagnosis is an automatic yes, and I was Stage IV when I applied. Anyway... I have THANKFULLY been NED for 4 and a half years, and have simply been living my life without the stress of having to hold down a job. Hubby makes a good income, and my disability helps us pay the bills.

Well, SS sent me a re-evaluation form to decide if I still need to be on disability. So I'm a bit afraid that they will determine that I'm no longer disabled, even though I'm still considered a stage-IV patient. (I also have lymphedema, which lately has been more of a hindrance than the melanoma has).

If you or someone you know was on SSD for melanoma, and lost it... would you let me know? OR if you've been re-evaluated, and they let you stay on it... please also respond. It would help with my nail-biting!

Love to you all!

Jackie Doss, Stage IV NED... Dallas, TX

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Wetterhorn's picture
Replies 9
Last reply 7/2/2013 - 11:22am

Been a while since I've posted here as I have had the luxury of being NED since Aug 2009, however a recent appt has unfortunately changed that. Last week a routine blood test showed that I was anemic and had very low red blood cell counts. Doc ordered immediate Pet/CT which showed an active mass in my small intestine, near my liver. I have been experiencing some side pain for the last few weeks but wrote it off due to holiday diet. A subsequent CT showed that indeed there is a mass, likely melanoma in the small intestine, approx 3.6 x 2.9 cm large.

I am in NYC, being treated at Sloan Kettering (Dr. Carvajal) and NY Presbyterian (Dr. Taback). Was recommended that since I am symptomatic, surgery would be the best course of action. Curious to know if anyone else out there has had surgery on the small bowel before to remove melanoma? This appears to be a single lesion.

My brief history:

Aug 2007: DX with melanoma on left knee. Wide area excision and positive sentinel node.

Sept 2007: Lymph node dissection, rest of nodes came back negative.

Nov 2007-Nov 2008 - high dose / low dose Interferon

April 2009:  VATS on left upper lobe of lung with 1cm tumor removed. Same surgery had a sub q removed from thigh.

Aug 2009: had another sub q removed from left thigh. Been NED until last week.

Getting an opinion at NY Presbyterian as well.

If you have had surgery on the bowel (small intestine) I would like to hear from others about recovery time, complications, how difficult surgery was  etc.

Thanks

Wetterhorn

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MsKage's picture
Replies 2
Last reply 2/4/2011 - 2:47pm
Replies by: MsKage, lhaley

Hello smiley  I had a recent PET scan, which showed slightly increased intensity in a spot that's been lighting up in my chest for a few months (but only 2.7), plus a new spot in my hip at 4.4 SUV.  The report suggests MRI with contrast to further evaluate the area; my doctor ordered a CT scan, though.  I am a little confused on which is more appropriate and in what situations.  I would like to see a specialist soon, but am very far away from any and also want to get the ball rolling on these scans.  I'm currently stage 3A... hoping it stays that way...  any input is appreciated, there is so much information to learn and things to consider, it's very overwhelming. Thank you.

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KellieSue's picture
Replies 19
Last reply 2/12/2011 - 3:42pm

Well it's been three weeks since I did 8 bags of IL-2. Had scans last week and there looks to be new tumors in the lungs. Damn!

My dr. said there's a small chance if we redo scans in a few weeks it could show better results but we are both not counting on it.

I don't remember much of the actual IL-2. I was out of it most days. Hubby said after bag 8 I was unresponsive so Dr made the call to stop. I was hoping to take a week off then do more but had a tough recovery.

Came home on oxygen, stats were a bit low but feeling better now. Back to work.

I just had a clean brain MRI(whoo!) so I got tested for B-RAF. Hoping that comes back positive and I can get on the trial. It just (within the last week) came to my hospital so I'm positive it could work for me. I'm feeling down and frustrated, I was really hoping IL-2 would do something for me. My cancer seems to be picking up lately and it scares me.

In other crappy news my friend who did the ALT trial with me is having a rough go of things. A few weeks back tumors were found in her brain, she did radiation and seemed to be doing okay. Tumors were gone. Her lung tumors seemed to be responding very well to ALT. Then on Wednesday of this week she was taken to the hospital unresponsive. Found to have numerous new brain tumors. She was moved to Pallative care yesterday. I'm sick to death of this. She has 3 young girls, she's just 36. I don't know what to say or do for her family. I went to visit and cried like an idiot. I don't understand, I just saw her last Friday.  Can I scream now? Please keep her and her family in your thoughts.

 

Kellie(from Iowa) Stage IV, waiting to do B-RAF????

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/4/2011 - 1:31pm
Replies by: Sherron, KellieSue

It is with great sadness that I read that John Brian Becker (JB) passed away this morning 02/0/11.  

Free from pain now and watching over his beloved JSP.

You may have followed their incredible blog:  http://www.bothofus.org/ 

Luke 1:37

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deirgey's picture
Replies 9
Last reply 11/23/2011 - 4:12pm
Replies by: Anonymous, sharmon, deirgey, Jim in Denver, LynnLuc, lhaley

My father has tested negative for the most common gene mutations, BRAF and KIT.  We were hoping for one of these b/c we were under the assumption that there are more treatment options available with either of the 2.  He has Melanoma in his spine, liver and lungs.  It took about 4 weeks for the tests to come back and we finally got them today.  His doctor recommended he start treatment next week with Abraxine (chemo drug) and Avastin b/c we don't know the gene mutation but he needs treatment ASAP.   Just looking for advice, comments, suggestions?  Anybody else in a similar situation? 

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Dynasysman's picture
Replies 4
Last reply 2/4/2011 - 5:30pm

Had my first post-surgical scan on Tuesday.  A brain MRI pre-surgery revealed a "probable" melanoma behind my left ear.  As a result, we did a contrast-CAT in December that suggested nothing major was wrong.  My ONC decided to repeat it two months later (which was Tuesday).

Tuesday's report was that the "probable" melanoma had not grown at all in three months, and may more likely have been a blood vessel captured at an odd angle.  So far so good...

But another angle of the contrast-CAT revealed a small probably lymph node elsewhere in my left posterior neck region (where the problem started in the first place).  So...we need more pictures in 6-8 weeks before determining whether that's a problem or not.

My ONC and surgeon both say they're not particularly worried, but this isn't exactly the same thing as "all clear".  Very frustrating.

Is this the kind of "NED" experience other people have, or am I just stuck in a funny place?

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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Sharyn's picture
Replies 18
Last reply 2/7/2011 - 1:52pm

Hi MPIP family,

I was scheduled for SRS on Monday for 2 tumors. However I just got a call from my Dr to say that one of the tumors has grown from 1cm to 4.5cm in 2 months, so it will have to be removed surgically. The other one will be done with SRS. If anone has any experience with brain surgery, could you please share it with me? I am really scared!

Hugs

Sharyn, Stage IV

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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kcta224's picture
Replies 4
Last reply 8/3/2011 - 9:52am

Is Leukine the miracle drug for Alzheimer's patients. I'm here because of my Mom. She is now 84 and an alzheimer's patient.

We want her back. She's still here but deteriorated within the last 1 year.

I've been reading about Leukine being a promising drug for Alzheimer's ....allegedly worked in rats--removed all their plaque and they seemed to remember everything after 20 days of treatment.

 

Is anyone taking this drug my mom's age? if so, what were the symptoms you experienced?

If you are not 80 plus, but you were 50 plus or older, have you felt your memory --- improved?

 

thanks for your input.

 

my Mom

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MRFUser2011's picture
Replies 8
Last reply 11/23/2012 - 7:50pm

I keep reading in people's post about annual blood tests (and it sounds as if this is the only follow up for some even at Stage III).  I am wondering if there are specialized blood tests that can detect melanoma?  All I have ever had is a typical blood panel at my oncologist's office.  Thanks for any info.

Shari

Game on. I am going to win! (The thought I had when I heard the doctor say I had melanoma.)

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Carole K's picture
Replies 6
Last reply 2/4/2011 - 4:26pm

I felt since so many people asked about the treatment I did, it would be easier to reply on the board.  Let me start by saying  I AM NOT IN ANY WAY OPPOSED TO CONVENTIONAL TREATMENTS.  I just chose after much research to do alternative therapy. 

After having been diagnosed with the brain met and knowing what my prognosis was I fetl alternative medicine was best for me.  I still see my oncologist , and my neurosurgeon and I lvoe them to death.  I made the decision to do anthroposophy. I felt I wnated to live my life to the best of my ability.  I did not want to be sick for whatever time I had left on this planet. 

Let me just clarify that doctors who practice Anthroposophy are MD"s who have gone to medical school, interships and residency.  They chose a different path to practice medicine,  Anthroposophy was started in Berlin and is a standard form of practice there.  Anthroposophy doctors for the most part are part of a community, it's a way of life.. someof you may have heard of THE WALDORF SCHOOL. They are part of the Anthroposphy way of life. they grow veggies hydroponically.  they live a very simple life and for the most part stress free....sounds good to me..

The doctor who prescribed my regime was in the process of moving to Louisville, Ky when I went to the office. I did not see him, but anothe doctor who took over his practice at the time.  Dr. Johnson prescribed injections of Mistletoe, yes,  the kissing branch, this is for the cancer,  astralagus for the immune system and formica for overall well being. I gave myself injections twice a day three times a week for about two- tow and one half years. 

I also became very selfish and began meditating, having massages ( yes I know they are controversial for cancer patients ) and taking care of CAROLE.  I knew I was in trouble and had to do all I could to try to get my body back in balance.... I had been doing a great deal of exercise at the time and continued with it, walked on average of 3-5 miles a day--- to keep the endorfins high.. on the recommendation of Dr. Morton at JWCI.  also I swam daily  ( which I miss more than anything at this point.. I now live on Long Island adn boy where I am it is an ISLAND.  LOL  ).  I was in good shape.Sadly, not any more. 

I followed a macrobiotic diet for two years and am very sorry I went off it.  I strongly recommend it ....  I am following it somewhat but not like I once did. The first four to six weeks are very cleansing..  you would not believe the toxins excreted from your body, your skin breaks out, you have horrible breath and you loose weight.,  but once you are cleansed you will never look better, feel better or have more energy , NO FOOD CRAVINGS... and an overall feeling of complete well being..  Yes, I know I have to get back to it  FULL TIME AND TOTALLY. 

If anyone would like any information please e mail me directly--- melanomahelp@aol.com

Alternative medicine is not for everyone.. DO WHAT YOU FEEL IS BEST FOR YOU.  GO with your decision and NEVER LOOK BACK.  NEVER GIVE UP HOPE.

Love and Light

Carole

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davidroten's picture
Replies 0

Has anyone ran into pseudotumor cerebri wife is stage 4 now and has been diagnosed with this condition.

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LynnLuc's picture
Replies 4
Last reply 9/27/2011 - 12:36pm

I also saw Dr Weber and discussed going back to work. He thinks it's a great idea and says I am doing awesome. He also says I am ona good drug and feels very good and believes I will continue to have positive results...dare I hope! I have 2 more treatments and then I go to anti-pd-1 (MDX 1106) every 3 months....hoping to remain NED! Just wanted to share the news!

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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carol b's picture
Replies 6
Last reply 2/4/2011 - 9:59pm
Replies by: DonW, carol b, KellieSue, Fen, triciad

I will find out tomorrow if i am B-RAF positive. Many prayers are needed as i feel it is the best treatment for me.. I found a new tumor under my breast on the rib bone last night about the size of a pea. I guess mel has broken out of the lymph nodes. I dont know what to think about that. Any ways, prayers for u all and thank you all for your stories of inspiration and hope. Praying all is well with all of you

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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elefk's picture
Replies 2
Last reply 2/2/2011 - 2:05pm
Replies by: Lori C, King

I am stage 4 without ckit or braf mutations. What are your best ideas for treatment?

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