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.

Expand/ Collapse Topic
 
Replies By
View Topic
The Gambler's picture
Replies 7
Last reply 1/6/2011 - 12:15am

The subject is not my wife .....Mine is the lovingwife Deb not to be confused.She is my life Piolot weather on the back of our bike on an adventure or next to me with support and all the love she can give and give.

Well I thought I was done with Mel as of last July giving up my lymph Nodes and we were looking forward to December  fresh exam and PET Scan with a new good outlook for the new year. Well then came the phone call from the Onc and results........it's back more melanoma and another tumor.Altho the lymph nodes,lungs,liver and assorted vital organs all not showing currently  (good for us )...but  it has found it's way to my brain it is a tumor the size of a golf ball  ( I could have been more satisfied with a big toe instead ).Well the next 4 days were full of all the worst possible Ideas of what was coming up next.Today was the meeting with the neurosurgeon for Deb and i learn our fate.Our warrier Bill58 has been fresh in our memory so we hold on for some promise.The surgeon was went through every item of every detail  to the point Deb and i could feel confident ( how do you go from terrified with brain surgery to be OK with it ? ).Well it is going to be surgery and not radiation unless he is forced he favors surgery to be least amount of potential other complications.I asked the question of how long did it take to grow in the brain and his estimate was about 6 weeks,he told me as fast as Mel spreads and grows I do not have the luxury of time the longer it growd the more damage happends i am already notice issues in speech.

.I still feel one of the best things i can do as take in all the best nutritional foods and a couple vitamins to support my immune system as best you can....OH yea and to make sure my wife knows daily I love her.

Well off we go to kill some Mel ass,,,wish us the best..

Login or register to post replies.

LynnLuc's picture
Replies 4
Last reply 1/4/2011 - 9:37pm

Just bummed and walking back in my mind again...

In 1992 0r 1993 ( I forget!)  I had that spot on my neck that looked like a flat brown long freckle about 1 in long. The Army doc's sent it off to Walter Reed ( my ex was stationed in Stuttgart) and the report came back as Lentigo maligna and that that it was not likely to spread to other parts of my body although it was still melanoma... told me not to worry...

Then in 2000it came back in the same place as the purple round spot raised up like an eraser on a pencil.

Gross Description:

 Diagnosis: Malignant Melanoma. Clark's Level 3. Tumor Thickness 1.45mm. The Margins of Excision appear uninvolved. Consider re-excision.

 Microscopic Description:

Within the dermis is a tumor composed of sheets of mildly atypical melanocytes some of which are pigmented. The pattern is consistent with malignant melanoma and involves a widened papillary dermis. Unequivocal invasion into the reticular dermis is identified. There are a few atypical melanocytes within the epidermis although pagetoid spread is not a prominent component. Tumor thickness is measured 1.45 mm. The margins of excision appear uninvolved. A re-excision  is a consideration. Correlate clinically.

--------------------------------------------------

SO..I went back and had it re-excised...and  5 sental lymph nodes removed from my neck...all were clear. Nothing was recommended as follow up.

-----------------------------

In May and early June 2009 I was having trouble breathing and a few other issues I found out something was growing close to my superior vena cava and if they didn't stop it -it would cut off all blood to the top half of my body and I would die... when they used a Storz video mediastinoscope at Mayo Clinic and the surgeon found a very enlarged black right paratracheal lymph node they cold only get a few bits of tissue for biopsy purposes but they couldn't remove it...it wasmetastatic malignant melanoma. They recommended radiation and Temodar and told me I would be dead in 6-9 months..it was devastating... The surgeon said he would not consider surgery to remove it because of the dangerous location of it...he said it would need to get down to the size of a bb before he would consider surgery.

The chemo and radiation had was keeping the "thing" inactive...

In Feb 2010 while getting ready for a trial in Seattle I had a PET and my SUV jumped...my local North Dakota onc didn't want to anything until it got "bad"...and decided it was time to go back to Mayo for another opinion again...this time I asked about surgery and they set up a consult...since I had no spread and it had just begun to show activity after several months- the surgeon agreed to do a thoracotomy..my Mayo onc was under the impression it was 4- 4.5 cent melanoma  in a single lymph node...the surgeon did say he saw a little spot from the initial tests a year before that had no changed in size or shape...but wanted to remove it by wedge resection as well...March 26, 2010-It was a rough surgery and he took out 3 lymph nodes...the middle one held the melanoma and it was actually 6.8 cent. A lot of the melanoma was necrotized and that is why it didn't show up on the PET. The tiny spot he removed  by wedge resection was just a lymph node and not melanoma..

Now I in the second 12 week cycle of my vaccine trial at Moffitt and I am still NED...I hope it never comes back...

I am feeling very blessed and I am also feeling very guilty...I want to know why I am doing well and some of my friends aren't...did my original diagnosis of Lentigo maligna play a role in it? I want to know why I am different...any idea's...Hey Jimmy....you out there?? I have 3 friends not doing so hot right now and I am bummed out. 

 

 

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"

Login or register to post replies.

Noramott's picture
Replies 1
Last reply 1/3/2011 - 7:53pm
Replies by: Janner

My friend had his melanoma behind his ear and was cut quite a ways  down on his neck. 

 

The report says:

Pre Operative Diagonsis:  238.2: Preop Dx Atypical Melanocytic Proliferation/Melanoma Accession

Diagnosis:

Archival material and the pathology report have been reviewed.  Some sections exhibited residual proliferating melanocytes with atypia however these are adjacent to the previous biopsy sight and demonstrate no evidence of dermal involvement and the margins are widely clear.

Gross examination:

The specimen is labeled "R neck lesion: one suture superior, two sutures inferior" and consists of a teardrop-shpaed tan skin, 5.5X3.7 cm, with attached subcutis tissue, up to .5 cm in thickness.  A single suture is present along one edge designating the superior margin with a double along with opposite margin marking the inferior margin.  The single suture will be assigned as the 12 o'clock position and the double suture the 6 o'clock position using clock face designation.  

 

Then he had other places removed and this is what it says:

1) Skin, Mid Superior Back:

Pigmented Compound Lentiginous Nevus with Archituectureal Atypia, Cytologic Pielmorphism and focally involved margins.

  2) Skin, mid inferior back

Pigmented compund nevus with focally involved margins.

 

So if anyone can help tell him what this means, that would be wonderful.  There ought to be a section at the end that says, "all these big words means blah blah blah."  Thanks for any help.

 

Login or register to post replies.

Linda J's picture
Replies 1
Last reply 1/3/2011 - 7:32pm
Replies by: Anonymous

I am considering doing the braf/mek combo phase I trial at PMH in Toronto. Are people seeing good results with these drugs?

Login or register to post replies.

kinthai82's picture
Replies 1
Last reply 1/10/2011 - 7:45pm
Replies by: kinthai82

 

Happy New Year!

My name is Cynthia Chen. I am a medical student in California and will be graduating in May of 2011. I have long been an advocate of raising awareness, fundraising, and research for melanoma.

I, along with one of my classmates, would like to create a video on melanoma awareness.  We want to recruit several people to put in the video who are either melanoma survivors or friends/family members who have lost someone to melanoma.

We are located in the Orange County and people from Los Angeles, San Bernardino, Riverside counties are welcome! 

If interested, please contact me via this post, email (cynthiaLchen@gmail.com), or call me at 510-717-9782, and I will provide more details.

Thank you for your time! We will win the fight against this awful cancer!

Login or register to post replies.

carol b's picture
Replies 7
Last reply 1/8/2011 - 2:30am

I start Interluekin-2 next tuesday at the Baptist Memorial Hosp in Memhpis Tn..I dont qualify for surgery because the tumor and lymphodes are matted and to close to the nerves and blood vessels under my arm and in my neck.. Can anyone tell me about what my first day will be like with the interluekin-2? thanks in advancesad

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

Login or register to post replies.

ockelly's picture
Replies 23
Last reply 8/22/2011 - 6:04pm

Is anyone out there, besides Michelle in VA, in this clinical trial?  Wondering if you are having side effects after injections?  

Any indication if you are receiving the drug vs the placebo?  We should hear this week if my husband, TJ (stage 3b), qualifies.

Kelly

Login or register to post replies.

ktorrey14's picture
Replies 9
Last reply 1/6/2011 - 6:52pm

HI,

My younger brother recently moved to the Portland, Maine area & we are looking to find him a new doctor skilled in following up with his melanoma care.

He was diagnosed 3 1/2 years ago with Stage 2A NMM and moved from Minnesota to Maine a couple months ago.  We had a fantastic doctor here in the Minneapolis area who worked exclusively with melanoma patients so are now looking for someone in Maine to continue being vigilant with his care.

If need be, he COULD travel the two hours to BOSTON area where we know they would have many skilled physicians.  He just thought if there were a skilled Melanoma Specialist closer to him, it would work-out better for all these follow-up visits.

Thanks in advance for your help!!! :)

Big Sis KT

Login or register to post replies.

Seems to have a lot of good stuff in it.

Login or register to post replies.

Not all SPF 50 sunscreens are equal.

Do the best you can.

Login or register to post replies.

Lori C's picture
Replies 9
Last reply 1/3/2011 - 8:01pm

I am sorry to pass along the news that Bill58 (stage IV recently found to have brain mets) died today.  Bill was very supportive of me during my caregiving experience - he is from my hometown (we went to high school together, as it turned out) and came to Will's memorial service.  He shared a doctor with Will and recently switched from Dr. Jon Richards/Sigrun Hallmeyer (will's initial docs) to Dr. Howard Kaufman in Chicago.  I was very happy he had chosen Dr. Kaufman and was so hopeful for him.  Bill often posted on here but I was not sure if his family would have access to notify the board....

He leaves a wife and three children. 

Login or register to post replies.

lovingwifedeb's picture
Replies 15
Last reply 1/3/2011 - 10:06pm

I was really hoping I wouldn't have to come back here writing, exposing my feelings for all to see. But if not here then where? It's not the same in the other places I've been, the support is big here, so I'm back asking for your generous feedback for the one person in my life who is changing before my very eyes.

It has been only 6 months since melanoma has taken over our lives, to some that is a drop in the bucket. To some of you, your experience is vast, the years long and painful. I will not be able to compare my story to yours and I will not try. I write from the heart only, I am the caregiver, the wife who watches her husband slowly change from the person she married.

Father's Day - Stage 3B

July 22nd - Surgery

Choice - No treatment/Nutrition Based

5 Months - Happy New Years - New Tests - Stage 4 - Brain Cancer

No other "hot spots" in body found

 

My husband's melanoma has crossed the lymph system into the blood system into his brain, 6 short months from diagnosis... now what?

Appointment with the neurologist on Monday.

Absolutely Terrified.

 

Deb

lovingwife to Bob, stage 4

Login or register to post replies.

mike_nj's picture
Replies 10
Last reply 1/4/2011 - 10:41am

Hello all

I have been checking the board frequently but rarely see anyone around to chat with lately.

Anyway, I hope that this year is the year that the researchers connect all the dots and we can start talking about either curing melanoma or downgrading it to a chronic disease, but no longer life threatening for most people.

I still work and I am involved in building a cat litter plant so my 3 cats should be happy.  My family, threw me a surprise 60 b-day party back in November.

I am due for another checkup in May as I am now 6 plus years out from my stage 3B diagnosis.  Still have Lymphedema in my right arm and some external radiation scars but in pretty good shape, other than my knees (arthritis).  I still take an assortment of supplements as well

If I had to get this cancer, I am honored to among all of you, those we lost and mourn , those fighting with active disease, those like me in a holding state, the newly daignosed, and all the caregivers and doctors and nurses that are on our side.

Happy New Year

 

Mike from NJ

Login or register to post replies.

nicoli's picture
Replies 2
Last reply 1/2/2011 - 10:01am
Replies by: Rocklove, JuleFL

Dear Melanoma (NOT!),

Well, 2010 has come and gone and only partially because of you, mel, it was without a doubt the worst year of my life. We had quite a fight. You did your best, even returning after I thought I had kicked your a**.  

But.....I'M STILL HERE!  And I expect to be here this same time next year, thanks to my God, my good doctors, and my treatment plan.

But will you still be here next year, mel?  Maybe not, maybe they will find a cure in 2011. Maybe 2011 is your final year, mel. Maybe. You BETTER be scared, mel, cuz nobody likes you mel, nobody is praying for you, nobody is working and fighting to find a way to keep YOU alive.

Maybe you better run home crying to your mama, mel, maybe you better go home and get your affairs in order, mel !

So here we go again, just you and me, mel. Ready?  CUZ I AM. Round One of 2011: Biochemo starts next Thursday. Let's see how you like it, mel.  I know I'm gonna LOVE it. Can't wait! Let's go.

Most sincerely,

Nicki, stage 3b

 

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

Login or register to post replies.

JewelryCrafterGirl's picture
Replies 31
Last reply 8/9/2014 - 12:47pm

Was wondering what your recovery times were like for the wide local excision and sentinel lymph node biopsy.  Am having mine done at Lee Moffitt (Dr. Zager) in Tampa, Florida on January 13 or 14.  WLE is mid back, SNB is either under arm or neck area.  They say six weeks for total recovery, but that some people are ready to go back to work in just a couple of days.

Thanks, Happy New Year!

Pennie

embrace the positive

Login or register to post replies.

Pages