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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lisab60's picture
Replies 28
Last reply 5/13/2013 - 8:28am

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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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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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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Sherron's picture
Replies 4
Last reply 5/11/2013 - 1:47am

It was wonderful....9 members of my family...all walking in Jim memory, even my little grandkids who were only 4 and 5 when Jim passed.  It was Awesomse....I was able to earn $520.00 for the cause.  I am so proud of my friends and 2 people at this site who donated.  It was such a beautiful day...Met Barbie Girl, Donna Regan, Margaret Fowler, Jackie Doss....Just an awesome day, and for such a good cause.  I also walked for all of you here!!

Take Care,

Sherron, wife to Jim FOREVER!

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mama1960's picture
Replies 9
Last reply 5/12/2013 - 12:49am

Ok, I am on Fenogyl patch and hydracodone for pain from bone mets. The problem is, I am having a terrible time with constipation. I am drinking lots of water, eating lots of fruit, taking triple doses of Dulcolax and have even resorted to enemas. no joy. Any ideas?

It is what it is.

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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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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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DeniseK's picture
Replies 8
Last reply 5/11/2013 - 1:34am

Hello my fellow Warriors!  Long time huh?  Yes I'm still alive and kicking, kicking pretty good actually.  It's been a rough couple of months but I'm making it through.  Last I posted I was suffering horribly from nausea.  I lost 30 lbs in a month and was super weak.  My Z dosage was 3 x 2, I dropped it myself to 2 x 2 just to feel better, my doctor was a bit upset with me but it's still working and I"m definately feeling better.  Sometimes I will stop taking it for a few days if I"m feeling bad but go right back on it, so far so good nothing is growing and my tumors have significantly decreased or disappeared.  I"m not NED as of yet but hoping to get there.

My WBR didn't kill the brain lesion but either the WBR or the Z reduced the size from 12mm to 8mm.  I"m going in for SRS starting June 10th.  I had to delay things because I"m going on a cruise this next Monday-Friday.  I'm going to Mexico so I have plenty of sunscreen.

I just wanted to drop in and let everyone know how I"m doing.  I"ve been cruising around the site seeing how people are.  May marks the 5th month that I've been on Z and I'm getting a little anxious hoping it'll keep doing it's thing, but the good news is my brain is officially stable for 12 weeks and I'm looking into trials.  I hope there's something out there that will cure us all!!

Lots of Love,

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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mishcakes's picture
Replies 19
Last reply 5/11/2013 - 11:59pm
Replies by: mishcakes, washoegal, michelleaudie, Janner, Anonymous

My sister made me an appointment to see a dermatologist as she was concerned about my acne. The doctor had a brief look at my face, and as he was leaving the room he asked off-hand if I had anything else I wanted him to look at, suspicious moles, yadda yadda. I said actually, yes - one mole that I kind of had my eye on for the last year or so, on my upper right thigh, that was small but two colors, black and tan. He took a look and said, yep, let's remove this, and before I knew it the nurse was back to prep me for a biopsy. Funnily enough I ended up fainting for the first time ever as he was cutting it off, falling into the doctor and spilling my glass of water all over the floor. I woke up still in my underwear after what felt like a nice nap, and quickly realized "oh wow, I'm still at the doctor's office" - weirdest feeling ever! As I left the office I hoped that that would be the end of it, not wanting to have to face the staff again as "that girl who passed out".

 

Unfortunately, as would be evidenced by my joining this forum, that wasn't the end of it. I got that horrible call that we've all had last Friday. "Beginning stages of melanoma, we're scheduling you for a wide local excision, asap. Can you come Monday?" I took notes, said thanks, and called my husband. Then began the internet research. Oooooh boy. Having had no family history of melanoma and not really knowing much about it, all of a sudden the true nature of my diagnosis hit me like a sack of bricks. Since the nurse hadn't sent along the pathology report and the office had since closed for the weekend, all I had to go on was that I was in the "beginning stages" - did that mean stage I? II? How deep was it? I quickly became versed in Breslow's depth, Clarke level, 5-year survival rates, recurrence, metastasis, and the melanoma's favorite spots in the lungs, liver and brain.

 

Despite my best efforts to remain sane and rational, everything I felt or saw became a death sentence. I'd been feeling light-headed and had more headaches since the fainting - it's spread to my brain. I felt a small bit of pain around my left armpit - spread to the lymph nodes. Pain in my chest - it's spread to my lungs. I had a mild sunburn earlier in the spring - oh god, I am such an idiot. I sobbed into my husbands shoulder, "all I want is to grow old with you". Suddenly our happily-planned life of remodeling our home, traveling, enjoying nature, being together, starting a family - began to unravel. "I am 31 years old, why me, why now?"

 

On Monday I received the report. I will paste it below - and would appreciate any feedback from those more familiar with some of the terms. The doctor cut out a chunk of my leg and sewed me back up, and thus begins the waiting game for the next pathology report. I live in Mammoth Lakes, CA - aka, high-altitude (oops) middle-of-nowhere mountains, so will have to find an oncologist nearby, likely in the Carson City/Reno area. If anyone has an recommendations for doctors in this area please let me know.

 

So, here I am. I'm 31 years old, fair-skinned (Scandinavian ancestry), dark blonde hair and brown eyes, no family history of melanoma, or cancer for that matter, save my paternal grandmother who died of ovarian cancer. I grew up in northern Illinois, and spent summers swimming and playing soccer, but always with sunscreen. I did use tanning beds occasionally in my late teens and early 20s - a few times to prepare for a vacation to Mexico, a few times as it helped clear the acne on my face. Holy hell, if I'd only known...

 

I moved to Mammoth Lakes in 2009, elevation 8,000', and when going on hikes or planning on being outside for any period of time would always wear sunscreen - but if walking to the grocery store or poking around in my garden for awhile, would not. Of course I wish I could kick myself now, but I didn't burn and wasn't out for "long", so thought it was okay. I had a friend randomly stop over early spring, and as it was one of the first nice days of the season, we sat outside to chat. As it happens, we chatted for longer than expected, and I burned mildly on my right shin. Idiot, idiot, idiot...!

 

Here are some of the questions that I still have:

- Should we consider moving to a lower elevation? We love living here, but it's not worth my life.

- Does anyone have a recommended oncologist/hospital in the Carson City or Reno area?

- Besides staying inside or in the shade between 10-4, covering up, wearing sunscreen, exercising and eating healthily, does anyone have any further recommendations for lifestyle changes?

- My husband and I are going to create a full body map of my moles and spots, complete with pictures and measurements, to augment checkups to the derm/oncologiest. Is there anything else we should be doing?

- Should I find a counselor/therapist? I am still terrified, and don't want to lean on my husband too much.

- Will I be able to become pregnant if I have to go through any further treatment? Does pregnancy increase the likelihood of the cancer recurring?

- Will I ever feel normal again?

 

Thanks and much love to you all.

 

Pathology report (original biopsy):

Microscopic diagnosis: Melanoma

Microscopic description: The biopsy shows an asymmetric and irregular proliferation of single and nested atypical melanocytes at the dermal-epidermal junction. The single and occasional nested atypical melanocytes are present above the basal layer of the epidermis. The underlying papillary dermis shows mild dermal fibrosis and chronic inflammation.

Gross description: Received in formalin is a fragment of tan tissue measuring 1cm. Entirely submitted.

Comment: The melanoma is mostly in-situ with occasional atypical nests are noted in the papillary dermis with an approximate depth of 0.12-mm. These atypical nests appear connected to the overlaying epidermis in some sections. The neoplasm extends to the margins. A definitive re-excision is recommended.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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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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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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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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TSchulz's picture
Replies 11
Last reply 7/16/2013 - 11:54am

Hello All, 

I wanted to share my latest good news from my follow-up visit to NIH last week.  340 days after they infused my 119 billion TIL cells back into my body -my doctors gave me the label of " Complete responder with no evidence of disease".  This is a label I hope to wear for a very long time. 

It has been a great year watching the tumors shrink away.  But even with each bit of good news comes the fear that it will, at some point, turn the other direction without warning.  Hearing the phrase above has allowed us to breath a little deeper and feel a little more confident that melanoma may remain behind us for a little while.  (How about gone but not forgotten?)

I don't post here all that often but when I have I have received so much support and inspiration.  I am constantly amazed and inspired by everyone who chooses to share their stories or their advice.  I  have never participated in a community like this before but have found so much peace in knowing that there are others who really know what this about - and they have my back.  Thanks for that.  

I hope everyone who reads this gets to hear the words of "no evidence of disease" and those words linger for year after year.  

All the best, 

Troy

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MJHatch's picture
Replies 10
Last reply 6/10/2013 - 1:45pm

Hi all.  I have been NED for 10 years and haven't been on this board in a very long time. 

My mel was stage III (2.5 on my upper back with a postive lymph node). They removed all lymphnodes in right axilla and none of the others were positive for mel. I also did the entire year of Interferon. 

I just had a "cyst" removed from my left neck and learned that it is CD4 positive pleomorphic T-cell lymphoma.  I have been referred to a radiation-oncologist and have an initial consultation next Wednesday.  In the meantime, I am still waiting for the surgeon and/or dermatologist to return my calls.  I have a lot of questions and am getting really frustrated with the lack of response. 

My question:  Has anyone here had melanoma then lymphoma?  This T-cell Dx is apparently pretty rare.  I find it ironic that the lymphoma was also diagnosed in the skin (so far at least).

This board was so helpful to me back in the early melanoma days, I hope I can find a Lymphoma resource that is even half as good.

Thanks for any info you can provide!

Mary Jo

“Live simply, Love generously, Care deeply, Speak kindly.”

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