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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KellieSue's picture
Replies 2
Last reply 8/10/2011 - 9:22am
Replies by: triciad, MichaelFL

Could be sooner rather than later.

http://www.reuters.com/article/2011/08/09/us-roche-melanoma-idUSTRE7783NK20110809

 

Kellie(from Iowa) STage IV

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

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MariaH's picture
Replies 7
Last reply 8/10/2011 - 7:37am

Dave was scheduled to start IL-2 on Monday, the 15th.  He went to our local hospital after having a "tightness" in his chest and they did a CT scan.  The scan showed significant growth in his lymph nodes in his chest, now pressing on a major vessel.  They called today and are scheduling him to start radiation prior to IL-2 (they worry that the swelling during IL-2 may cause the vessel to be compromised).  IL-2 has been postponed until the 22nd now.  I'm not sure what type of radiation they are doing, as they mentioned maybe 1-2 sessions of high dose.

I hate this damn disease, and my frustration level is through the roof right now...

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trishahimm's picture
Replies 13
Last reply 8/10/2011 - 4:21am

I am new to this, and my post might end up a little long, but please, any information will help.

My 59 year old father was diagnosed with a large malignant melanoma on the ball of his foot in May. It had been growing there for months before he finally had it tested. His GP told him it looked like he stepped on something and to put neosporin on it in August last year. Instead of going back after a few weeks when it didn't go away, he just put Neosporin on it everyday for months as it continued to grow larger. I knew nothing about this until May when he was diagnosed. A month ago, he had the tumor removed and plastic surgery to hopefully keep the foot usable. Before the surgery, the surgeon was very bleak about my dad's prospects, saying that it was a particularly rare type of melanoma and to basically start to think about how he wants to be cared for at the end. We were all panicked, but then the PET scan was clear, so we were then very excited that it was just in his foot. They removed 5 LN during the surgery from his groin area, we thought just as a precaution since the PET scan was clear. I didn't know until later that the PET scan doesn't show cancer in the LNs. A week later after we were all celebrating his good luck, we got the news that 4 of the 5 LN had cancer and that he needed another surgery to get the rest of the LN in his groin and thigh area, and then he would need immunotherapy. This next procedure was postponed several weeks due to the extensive wound on his foot.  Finally on Friday, they did a radical lymphadenectomy. We also found out Friday that the 4 cancerous LN they already took out were black. The dr said she removed extensive tissue from mid thigh up into his abdomen. There were several additional black LN found, one of them "deep in his abdomen" and that she took out as much as she possible could with this surgery. She said they have decided they will now do radiation on that area before they start the immunotherapy. She told my mom that they will do all they can, but that they found this very late, and that we are "behind the 8 ball now". My mom just blows her off and calls her "Negative Nancy" all the time and doesn't seem to want to hear any of it. She is of no help at this point in the discussion.

I have read so many positive posts of you all living years with melanoma or even cancer free, but the Dr told my mom if we look online, that we cannot compare, as his melanoma is different than what we will see on the melanoma sites. What does that mean? What info can I give you that might help me find others that have this "rare" melanoma? I have the pathology report from his biopsy that has some info on it that I tried to look up last month, but what denotes that it is a rare kind? Also, what stage is he? 3C? or since they found all the other nodes does that mean he is stage 4? I am confused. Any information will be appreciated, I want to understand what we are up against and what questions to ask the oncologist this week. My dad has practically given up already.

Trisha in CA

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/9/2011 - 9:22pm
Replies by: Angela C, Anonymous, Terra, Tim--MRF

Hello.

I am a Stage IV patient and just had a brain MRI this week and the results say, "There is a minimal punctate focus of enhancement along the high anterior right frontal lobe. This measures 2 to 3 mm in maximal size and is on the cortical surface. This is a new finding when compared with the previous exams and is suspicious for a tiny metastatic lesion."

I've never had any mets to the brain before. So, is there a possibility this could be something other than melanoma? I'd love to think that is the case, but I don't want to be unrealistic. A Stage IV Melanoma patient having something show up in the brain is a big red flag. This is very tiny. So, will they just assume it is melanoma or do they ever attempt a biopsy?

If this is melanoma, how will they most likely treat it? Am I looking at Gamma Knife? This is outside of my field of experience with melanoma so far and I'm trying really hard not to freak out right now. I won't see the doctor until next week  to discuss what he thinks needs to be done.

Be kind, for everyone is fighting a great battle. -Plato

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Lisa13's picture
Replies 2
Last reply 8/9/2011 - 8:38pm
Replies by: Nan in Nebraska, Rocco

Since ending dacarbazine a month ago, I started going back into my vitamin and supplement program. Mainly I focus on high does of Vitamin C, Vitamin D and a Potent Multi Vitamin and some green tea extract.

Tomorrow I start ipi and assume I won't be able to take any of these supplements during the trial - is this true or have others taken vitamins while on ipi? Gene S - you had mentioned back in June taking high dose Vitamin D and even red wine :) Was this okay with your oncologist or did you go against his suggestion? Can you enjoy a glass of wine on ipi? 

Lisa - Stage 4

Many impossible things have been accomplished for those who refuse to quit

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Lisa13's picture
Replies 1
Last reply 8/9/2011 - 7:42pm
Replies by: MichaelFL

There is alot of talk about this new vaccine that is showing promise in clinical trials. That being said, is it only for BRAF positive people and can it be used after ipi? 

Lisa

Many impossible things have been accomplished for those who refuse to quit

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I spent the past few days at the NC Mutual Drug Show and sat in on my husband's CE seminar. The topic was treating vascular disease with compression and the presenter owns the pharmacy this link is for. His store is in Texas and he's the pharmacist there...educated as a pharmacist and "certified in Phytomedicinals (plant-based medicines) and Alternative Medicine by A.N.M.P." He practices an integrative pharmacy and is innovative in that.

All that to say that I learned quite a lot just from what he said about what he's seen work in herbals and alternative meds. Being a pharmacist, he also knows what to avoid, how things mix, etc.

His store:   http://fmherbalrx.net/    Flower Mound Herbal  Pharmacy in Flower Mound, Texas. He plans to expand what he offers about this topic in the next few months; right now, not too much is there, BUT, I pass this along because he is qualified to discuss this and invites contact and questions...contact info on website. So many on here have questions about this and are trying things, I want you to be as safe as possible and would suggest contacting Dennis Song at this store.

A couple of things interesting: he did stress talking with your pharmacist about any supplements to check for interactions. Getting people's opinions about these things may not be the best step, you need to know about possible interactions.

Since we have to be concerned about our immune systems, I took note when he said elderberries are really good for boosting it and for lowering blood sugar.

He also gave the 4 supplement brands he sells: Metagetics, Life Extension, Ortho Molecular, and Xymogen.

If you're experiencing vascular problems try: grape seed extract, Butchers Broom, Horse Chestnut Seed Extract, Blueberries, Red Wine, Elderberries, Sweet Clover, Pycnogenol. Discuss low level compression with your dr.

And, a final tip: don't read the front label of bottles, read the back label...that's where you'll find the nutritional content.

I'll be the first to admit, I considered this stuff equal to quackery before hearing him and talking with him after the seminar and learning his credentials. I learned to be more open, but only to what someone, like him, says. I feel he's qualified. He backs up what he does with studies and what he's seen work through the years. I actually invited him to come on here sometime because this is discussed and questioned sometimes.

If folks are going to go this route, I want you to be as safe as possible, there's so much junk out there that preys on our fears. Hope this helps.

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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AZ_Gal's picture
Replies 5
Last reply 8/9/2011 - 1:00pm
Replies by: Tad, nicoli, MariaH, washoegal, Janner

I know my doc said that some numbness around the excision and snb are normal but is it normal to have numbness in my entire shoulder? My wle was in the middle of my back between my shoulder blades and my snb was in my left auxilla (armpit). Help?!

Reply

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Laurie from maine's picture
Replies 1
Last reply 8/9/2011 - 8:57am
Replies by: Phil S

Hi Everyone,

I started Braf clinical trial Vemurafenib last weds.  I am doing this thru Mass General and Doctor Lawrence.  So far no side effects except tired.  Def been STRONGLY warned about all the skin issues that might pop up rashes, skin sensitivity and growing things on my body ugh.  I can tell it is already working as lump in my breast is almost gone already.  I am psyched as we are leaving this weekend to our annual camping trip (cabins so not quite camping) to cooperstown ny and enjoy the peace and quiet it is soo beautiful out there and of course will venture in to town to do the basebal thing :)  perfect timing for me and my kids(in their 20s but still my kids)   and of course being a former bostonian - we are psyched red sox are doing soo well - sorry yankees fans :)

take care everyone, you are all in my prayers

laurie from maine

ps my sister who is currently battling stage 3 breast cancer is doing awesome with her recovery from surgery - been told she is a "rock star" by her doctors she is truly amazing!

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Hi Everyone,

     It has been awhile since I have posted.  I lived here at one point from 1999 until around 2007.  It was my life, my support, my escape, my everything as I walked the walk of lung mets and brain met.  I had just gotten divorced when dx with my brain met and this is where I would come  to laugh, to cry and get opinions.  MPIP was my ROCK and I would like to think all of us were ROCKS for each other.  I remember the laughs we had in chat and at times we had to take a deep breath when a newbie came in.  We all knew each other, we knew our families, we got together in Asheville twice, florida, Vancouver, Camano Island, and Dallas.  I know I personally would never have gotten through those difficult times withoiut everyone here. 

Kathie and Tim, Don W, Dian from Spokane, Angie, Mustang Sally, Charlie S, Kim K, KIm Iowa, The Indiana ladies, Claire and Meghan, Guten Tag, Nan, Leslie F and David, Dan and Jackie T, Kag adn her husband Jim, Johno, John from florida, Bill MTL, Pam and Mike Ok, Claudia V., Mary P, Dawn C, Debbie R, Debbie NC, Barbie Girl, Melissa L, Melanie, Heather who had moved to canada to be wtih the love of her life,Whoha, Bill Fla, M arie and Ed, Wendy, Mr.Ed, Shannon, Amy B., Jackie Doss, David from Richmond and later WI..Carver, Janner, Lennie, Misty, Swatts,Jack NYC,and my friends Bonnie and Chip who are still with me on this journey despite loosing thier spouses......   and oh so many many more.    I love and miss all of you soooooooooooooo much. 

I was dx in '95 and did well until the middle of my divorce...  and 4 1/2 yrs. later.. Wham!!!!!!! Lung Mets..  then ten months later Wham!!!  Brain Met.  I decided to do alternative therapy.  Why?  I knew my options and I knew the survival rate. I PERSONALLY did not want to be sick if I had a short time to live. I had just gotten divorced..  LIFE IS TO LIVE TO LOVE AND TO LAUGH..  and that was what I wanted to do.....

I chose to do Anthroposophy medicine giving myself injections.  of mistletoe, astragalus and formica.  it worked for me.  I also decided to be very very selfish I NEEDED TO TAKE CARE OF CAROLE.  As patients and caregivers we have to do that.  We have to take the time for ourselves , down time and just time for ME..  BE SELFISH,  DO WHAT YOU WANT TO DO.. TAKE CARE OF YOU. 

I know how difficult this journey can be NEVER EVER GIVE UP HOPE and do the treatment YOU WANT TO DO.  YOU KNOW YOUR BODY,  IF YOU DON'T AGREE WITH YOUR DOCTOR, TELL HIM.  I left a doctor because he would not respect I WAS THE PATIENT..  it was MY LIFE. 

Ten years has not been without it's mountains to climb.  I keep putting one foot in front of the other...  In this time I have built a new house, lived in Sanibel Florida and Asheville, NC before coming back to reality and live life at the beach.  I have been blessed to see both of my daughters get married to wonderful young men and to see the love of my life.. MY GRANDSON come to this world.  I alwasy knew a perfect man would come along.. He is 2 1/2 and the love of my life, he makes me laugh, laugh til tears roll down my face, we talk and then Mommy has to be ther translator.  lol.  He makes my heart smile.  I am so blessed.

MELANOMA HAS BROUGHT ME TEARS

MELANOMA HAS BROUGHT ME FEARS

MELANOMA HAS BROUGH TME PAIN,

MELANOMA HAS BROUGHT ME ANGER

MELANOMA HAS BROUGHT ME RAGE

MELANOMA HAS BROUGHT ME FRUSTRATION

MELANOMA HAS BROUGHT ME SORROW

IT HAS ALSO

MELANOMA HAS BROUGHT ME SMILES

MELANOMA HAS BROUGHT ME JOY

MELANOMA HAS BROUGHT ME HAPPINESS

MELANOMA HAS BROUGHT ME COURAGE

MELANOMA HAS BROUGHT ME STRENGTH

MELANOMA HAS BROUGHT ME FAITH

MELANOMA HAS BROUGHT M E HOPE

MELANOMA HAS BROUGHT ME LAUGHTER

MELANOMA HAS BROUGHT ME THE OPPORTUNITY TO MAKE AMENDS AND TO NOT LEAVE ANY QUESTIONS UNANSWERED FOR MY DAUGHTERS.  IT HAS GIVEN ME THE OPPORTUNITY TO SAY GOOD BYE..  SOME PEOPLE NEVER HAVE THAT CHANCE. 

IT DOESN'T MEAN LIFE IS PERFECT BY ANY MEANS.  Just look for the gifts this beast has brought us.  take the time to tell everyone in your life how much you love themi, write them letters for them to treasure, take lots of pictures, make lots of memories.  Hang TOUIGH AND KEEP MOVING FORWARD.  To each of you I wish you love, light and joy in your life

Love and Light

Carole

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RMcLegal's picture
Replies 1
Last reply 8/8/2011 - 7:41pm
Replies by: MichaelFL

The folks who participate on this board are inspirational.  Though there's been a lot of sad news lately and too many reasons to mourn, the sincere expressions of sympathy renew my faith in the essential goodness of people.

For all you tough melanoma warriors, a salute in the form of some new lyrics to George Thorogood's "Bad To The Bone".

http://hotelmelanoma.blogspot.com/2011/08/bad-to-bone.html 

Best wishes to all.

 

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JerNYC's picture
Replies 5
Last reply 8/8/2011 - 3:14pm
Replies by: Anonymous, JerNYC, Angela C, MichaelFL

I am new to the community, although I have read postings from time to time that have proved very helpful. However I cannot find an answer to a question I have about scans ...

I have just completed the first round of MDX-1106 (1mg/kg, 4 infusions) and was scanned last Thursday. I was unable to get the results from my Dr as he was out on vacation. However I had a radiologist look at the images and he thinks my disease has grown (each of the diseased nodes are 20-30% larger).

As I understand it, progress with mono-clonal antibodies can take time, and I have also heard talk of the Ipi "flare" phenomenon, and am curious whether a similar possibility exists with MDX-1106. I wondered if anyone could shed any light on how conclusive the first scan is for this type of treatment. I'm keeping an open mind right now, as I feel good physically, but to the extent this scan reduces the odds of an ultimately good response to the drug I want to scratch my head a little more about my possible next steps.

Thank you.

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AZ_Gal's picture
Replies 8
Last reply 8/8/2011 - 2:52pm
Replies by: MichaelFL, Anonymous, mombase, AZ_Gal, lhaley, nicoli

I had my SNB and WLE on Friday August 5th. Things went well according to my husband. I don't remember much.

 

They took out 4 lymph nodes in my axilla. 3 had the radio active dye in them one and tattoo ink. (i have 5 tattoos) I can grantee that I will be getting no more tattoos!

 

They say I should have my results by Wednesday the 10th. Cross your fingers!

 

For now I'm in an Oxycodone daze and sleeping quite a bit.

 

Thanks for all you support guys! I really appreciate it.

 

~Kim

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Erica A's picture
Replies 4
Last reply 8/8/2011 - 8:50am

Per suggestion for some encouraging stage IV news I am happy to report that my husband Ken had his 6 year NED anniversary this summer from stage IV!  Ken did the standard bio-chemo treatment at the time and all the details are in my profile.  It was a long journey, but today other than the once a year oncologist appointment and the physical scars - Ken is able to live a completely normal and cancer-free life.  I was always on this board when Ken was sick desperate for anyone who had survived stage IV cancer - I am hear to tell you that they do and you can.  There is always hope and people do go on to return to their lives.  Our thoughts are always with this community, feel free to email me any time with questions or just for support - we've been there and we understand.  Erica & Ken

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AZ_Gal's picture
Replies 4
Last reply 8/8/2011 - 1:19am

Ok, I know this topic is for mainly women but I wanted to see what anyof you have done to deal/cope with the uneven breasts after and SNB.

I used to be a perfectly even C cup now the side that they removed my 4 lymphnodes is significantly smaller than the other side.

 

ANY ADVICE???

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