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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JewelryCrafterGirl's picture
Replies 17
Last reply 2/5/2011 - 7:47am

I have been having a really bad burning sensation for many days that will not go away in my armpit right above the area where 3 lymph nodes were removed.  The back of my upper arm feels sort of like a numbness shot is wearing off.  It also feels like there may have been injections in my armpit, so hard to describe but a continuous pain/annoyance.  Has anyone experienced this sort of thing?  It has been 11 days since the surgery.

I also had the WLE on my back which is doing remarkably well as far as pain goes.  My uvula was damage from the breathing tube during surgery and that caused me more pain/discomfort than the WLE.

Thanks, Pennie

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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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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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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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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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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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Met with radiologist and neurosurgeon today.  Some of ya'll with experience may can help me solve this delima, as I think Drs. will respect my wishes:

1) A 1mm slice MRI will be done Tuesday to see if any more smaller spots shows up-he suspects it's highly possible.

2) Dr. says if multiple smaller spots DO show up, then I may want to do WBR (whole brain Rad.) 1st to shrink/retard/kill? ALL the smaller spots while bigger spots can be held at bay-  then do cyber-knife on bigger spots 3-4 wks. from then.

3) My concern is the fear that if I don't go ahead and get the 5 mm (plus or minus) two spots on each side of Basal Ganglia and the 4 mm spot on Thalamus, that they COULD? grow during WBR and IF they did they cannot be surgically removed IF they got too big for even cyber-knife to erradicate.

4) Either way I'll be doing both proceedures.  Just trying to weigh odds of which to do 1st.

5)  am I making any sense?  Bottom line:  Have any of you been faced with this delima?  Regaurdless, what would you do?  Just looking for direction from those with any similar experience.

Thanks for ANY input, I'll take all i can get!

PS. did like and feel in good hands with my Drs. at Baptist Memorial in JAX, FL.  Dr. Olson-Radiologist/former NIH researcher, and Dr. Chandler, neurosurgeon.  Both seemed very well versed in melanoma brain mets., however, i've come to a point to trust my own instincts combined with real life experiences of others.  My gut tells me to zap out the bigger and/or inaccesible mets first via cyber-knife, then worry about any smaller spots with WBR, even if 20 under 2 mm spots are found and my grow some while waiting 3 wks. btwn. cyber-knife and WBR. 

Please give me your opinion; if i'm making any sense, that is!

Thanks again & Love to ALL- Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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ValinMtl's picture
Replies 13
Last reply 2/2/2011 - 10:36pm

My doctors believe that melanoma has now spread to my left groin (confirmed to me tonight)...was always on my right leg before.  The ipilimumab did a wonderful job of 'stopping' my cutaneous growth problem on my leg but now have several new subcutaneous growths on the right leg plus am swollen in the left groin area. Last scan in November showed 20% increase in left groin area and 30% decrease in right.  I have a Pet scan this Friday and - the 2nd CT scan on 21st to see if I am eligible to re-enter the ipi trial.  The only other option I have here is the Dicarbazine and IL-21 50/50..of course, I would like the IL-21  but with 2 arms of a trial you never know where you end up. They have B-RAF trial but I am negative, darn.

I would like a back-up plan if I'm thrown off the ipi trial. Preferably IL-21 or biochem, is anybody aware of a trial that I could possibly be eligible for, having done ipi and interferon. In the meantime, I keep ploughing through the clinical trials.  Many thanks for any help offered.  Val

Live Laugh Love Nothing is worth more than this day!

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Erinmay22's picture
Replies 11
Last reply 2/2/2011 - 6:45pm

I was diagnosed in Oct with Stage IIIb melanoma (upper right back nodular, sentinel node involved - all others under right arm clear).  I had a CT/PET scan done 11-1-10 that came back clear.  I had a CT scan done 1-13-11 in order to try and qualify for a trial.  That scan showed multiple nodules on both lungs.  I'm trying not to freak out too much - but it's hard not to have some (ok a lot) of anxiety over all of this! 

My doctor said the spots are too small for a needle biopsy.  So my options are wait and rescan in 2 months or a different type of biopsy that is a little more invasive (don't remember what it's called).   Has anyone had lung biopsies done?  I'm hoping it's nothing (since the CT/PET didn't pick them up)...  blood work looks ok so far and I feel pretty good (no fever or cough - do feel like I have a bit of  sinus infection though). 

I guess the blessing is that I switched doctors and they did these scans (if they do end up being something) otherwise I wasn't scheduled for new scans until April.

Any thoughts/encouragment/guideance you have is greatly apprecaited.  I meet with a thoracic surgeon on Wednesday to discuss the biospy procedure.  Guess in my mind I'd rather go thru the surgery for the biopsy vs waiting 2 months... 

Cheers,

Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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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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elefk's picture
Replies 2
Last reply 2/2/2011 - 4:24pm
Replies by: LynnLuc, Fen

I'm stage 4 and my melanoma oncologist is recommending a clinical trial using sutent and avastin together. It blocks the formation of new blood vessels that feed the cancer. Does anyone have any experience with these drugs, eitther first or second hand?

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NicOz's picture
Replies 7
Last reply 2/2/2011 - 3:49pm
Replies by: MaryBZ, KatyWI, NicOz, cindyeh

Won't be around for a couple of days so just wanted to wish you all the best with your surgery. Will be thinking of you and sure you'll find it a piece of cake! Take care, don't over do it when you get home, and get lots of sleep to help the healing along.

Go get 'em, girl!!

Nic

xxx

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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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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Suzan AB's picture
Replies 2
Last reply 2/1/2011 - 7:42pm
Replies by: Suzan AB, LynnLuc

I received hard news today, mets/tumors in my right lung have grown and shown increased uptake.  I have one node in my left lung and nodes above and below my collar bone.  I have read that complete lung removal with treatment has a better survival rate than just getting clear margins (I have a paralyzed right hemi diaphragm with aceiation (misspelled?)  to the lower part of my lung with a large node sitting in there as well as a couple of nodes in the upper part of my right lung too.).  Seeing Dr. at UCSF on Thursday to discuss treatment.  Any suggestions will be greatly appreciated or stories about treatments that worked.

My best to all...I am kinda of numb right now...

Suzan AB

Presently...One Day At A Time.

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Terra's picture
Replies 3
Last reply 2/1/2011 - 7:26pm
Replies by: Anonymous, lhaley, Sharyn

Hi,

My husband, Derek, had lung surgery on Jan 17 for a lymph node in his right hilum, that had been there for 2.5 - 3 years.  The surgery went well, it was longer than expected because the node had grown into the outer lining of his trichea and windpipe therefore they had to take out his entire upper right lobe and part of his windpipe and trichea which they patched up with lining from his heart and then patched his heart up with a mesh.  He is recovering very well, this is his second lung surgery since progressing to stage 4 last spring with a nodule on his left lower lobe.  We are hoping he is now cancer free, waiting to see the onc and schedule a scan, we know there are suspicious spots in other places so we are hoping for a systemic treatment of some kind.  Several onc from the tumour board meetings in Toronto viewed his scans pre-surgery and all agreed there were too many questions about each spot to think any of the others were cancer - hoping they are right!

 

Thank you so much to Tina (& Tony) from Australia who graciously answered my questions about removing a right hilar node and who suggested we get another opinion from a cardiothoracic surgeon vs a lung surgeon - which we did and thankfully after 3 opinins we found someone who said yes it was resectable!  Thank you so much Tina!

 

Terra

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