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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Anonymous's picture
Anonymous
Replies 2
Last reply 8/16/2010 - 10:16pm
Replies by: King, DonW

My 76 yo father was diagnosed last October  with a 6mm melanoma on his scalp. After initial removal and biopsy, he had flap surgery at the Va in Long Beach in November to remove any tumor residue and widen the margins. We went to the VA in Long Beach because Dr. Jakowatz heads up the melanoma program there and we wanted to see a melanoma specialist. No treatment was recommended after the surgery due to my father's age and the likely hood that he could not withstand it.

A second follow up in June revealed mets to the lymph nodes in the neck. At that time a neck dissection was recommended to remove the nodes. My father went for a second opinion and it was revealed that mets to the lungs existed, so a neck dissection was NOT recommended. He was started on Temodar 5 days per month. He withstood the treatment well, with nothing more than being tired. However, he did develop difficulty walking and Bell's Palsy. The last lung scan revealed that the Temodar is not working and the tumors are growing. Last week he began to have pain in his clavicle area and problems with moving his right arm.

Today we brought him to the emergency room, because he was in such pain and it was discovered that his clavicle has a pathological break. 

At this time he may need more care than the family can give him and I'm getting the feeling that he is a candidate for Hospice, but we are unsure how to proceed. In some ways it is difficult to give up hope, but we know the seriousness of the situation and the course of the disease when diagnosed late. My father doesn't want to burden his family with his care and frankly I'm not sure that family care would be in his best interest at this point. Of course we want to support him and be there for him. 

Can anyone give me some direction on how to proceed. I would appreciate it greatly. 

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Jim in Denver's picture
Replies 2
Last reply 8/16/2010 - 8:26pm

Showtime has the first episode on their website if you want a freee preview:

http://www.sho.com/site/video/brightcove/series/title.do?bcpid=69609888001&bclid=292231022001

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pam from jersey's picture
Replies 13
Last reply 8/29/2010 - 10:22am

Hi All,

I've just been diagnosed with Stage IIIa from Sloan Kettering in NYC - I had a mole on my upper left back that came back 1.25mm - they did a wide excision surgery and a sentinal lymph node biopsy. 

 

Here's my path results:

 

DIAGNOSIS:

 

1.  Left upper back wide excision

- cicatrix

-no melanoma seen

 

2.  left axillary sentinel lymph node #1:

- metastatic melanoma in one lymph node

Note:  No extension into extranodal soft tissue is seen

 

3.  sentinel node #2 left axilla

one lymph node, negative for melanoma on levels and immunostains for s100p and melan - a

 

I met with Oncologist who said he will see me on September 27th - he recommended a CT scan which I had this past Saturday and I meet with the surgeon tomorrow to go over the results and to have pre-admission testing done  - He said he will see me back on the 27th of September to discuss further options (wait and see approach, participating in some type of protocol prophylactically (sp?)

I don't know..... everyone I talk to is wondering why am I not put on some type of chemo, or intereferon, or WHATEVER  -  Is it because the 2nd node was clean that it's not a priority???   I just don't know what to think - it's so depressing some things you read on the internet  -  

Can I sleep good tonight before getting my CT results?   HELP!!!   

p.s.  I'm 45 and in great health otherwise

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pam from jersey's picture
Replies 3
Last reply 8/16/2010 - 9:03pm

I'm having a lymph node disection surgery on the 27th - I'd like to hear some opinions in this as well  - THANKS!

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KRob's picture
Replies 1
Last reply 8/17/2010 - 7:55am
Replies by: kwahlbin

Sorry to use the main board for this question, but I have been frustrated for weeks trying to log-in to the board and always getting an "incorrect" message in response. When I try to "reset"  my password, the only message I get in my email is a "one time only" access link with no new password. When I edit my info (username and password) using that link, I can never get back on through the regular "log in".

Any suggestions?

Thanks,

Karen

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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I tried to access chat last night...but couldn't get in.  The WALL STREET JOURNAL online has a section called SPEAKEASY and is reviewing the show.  I will post the link.  You first must register with the WSJ to leave your comment....but what a great FREE forum to air your views.  It will just take a minute and your opinion will be viewed globally!  Stand up and be heard!

http://blogs.wsj.com/speakeasy/2010/08/16/the-big-c-premiere-with-laura-...

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Hi All,

So I thought i'd update you on our day with the doctors....

Turns out the chemo (dabarbazine) did not work. Big surprise :-( the bone lesions have all grown in size but only by about 15% in 2 months and no new sites, which i'm taking as positive.

Turns out the study they want to put him in is :http://clinicaltrials.gov/ct2/show/NCT01155453

And he will be the 4th person in the world to try this drug combo. We start on Sept 3rd. Fingers, toes and quite frankly everyhting else is crossed.

They going to radiate some of the lytic lesions to reduce the pain. Any one else had bone lesions radiated? Any side effects i should be expecting?

will keep you posted on results.

thanks for listening.

 

Emily

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lovingwifedeb's picture
Replies 1
Last reply 8/17/2010 - 1:52pm
Replies by: joy_

August 14, 2010

 

Do You Believe In Monsters?

 

I have personally known a few monsters at different times in my life, some who have loved the dark places in my youth. For example, in my bedroom at times they loved to lie in wait for me just to scare the pants off me. Sometimes from my closet or even more closely from under my bed was a favorite place for my monsters to hide, which made going to sleep almost impossible. The dark… the monsters… the unknown… the long shadows moving this way and that way just waiting to consume me. I will never forget that feeling of absolute terror.

 

Bob and I visited the doctor’s office (Oncologist) on Wednesday listening to our options for treatment. I do say “our” because we are in this together, I have taken my vow of  “for better or worse” seriously as I look over at him with tears in my eyes. It’s the first time I could not hold them back and for that I am sorry, very sorry.

 

We are in stage 3 (stage 4 involves an organ), but today Bob is cancer free.

 

Today all tests indicate there is no sign of melanoma seen within/without his body (that any machinery to find). But we still can’t forget that the primary melanoma that caused the cancerous tumor in his leg in the first place is still at large and too small for any test to find.

 

The monster is in the dark and waiting.

 

Since all is quiet within Bob’s body, this melanoma can’t be treated by any chemotherapy, the doctor says. Option 1, Try Interferon which boosts up the immune systems, it takes 2 years and makes one very sick the whole time you are on it, and has only a 5% chance of working. Option 2, Join a trial study group that uses a vaccine for melanoma. 2 of 3 people get the vaccine, 1 person gets a placebo. Option 3? Do nothing.

 

The monster is in the dark and waiting.

 

I looked over at my husband realizing if love ever had a meaning for me it was today as it slammed against my chest beating wickedly, straining as my heart tried to catch up to the very foundation of what our lives going to be from this day forward. What if…

 

The monster is in the dark and waiting.

 

If you would like to follow our family blog page please go here:

http://redesign08.blogspot.com/

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joy_'s picture
Replies 4
Last reply 8/18/2010 - 9:53am

My husband was hoping to qualify for the Derma study, but we found out today that he didn't.  He's currently stage IIIc and we are looking into other treatment options.  This looks to be a Phase 1 study, and I am curious if anyone out there knows anything about it or has received this treatment.  I've searched the board and couldn't find anything about it.  Maybe it is known by another name?

Tracy

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mifis's picture
Replies 1
Last reply 8/17/2010 - 6:53pm
Replies by: washoegal

Hi there,

I am asking for advise yet again on the melanoma in situ that I had removed from my upper left arm. A  brief recap.... the intial mole was excised by the dermatologist on 5/17/10. It was diagnosed as melanoma in situ. I saw a plastic surgeon on 6/7/10 and had another, somewhat larger excision and the pathology report recommended a further excsion as "In block 3, the residual proliferation of atypical melanocytes is virtually transected at a lateral margin". The plastic surgeon said I didn't need a further excision, that it was just my 'skin type' (freckled and fair) and sun damage that was showing up and that atypical melanocytes would appear probably anywhere on my skin. I decided, against his advise, to have a further excision which was performed on 7/28/10. The plastic surgeon told me over the phone that further atypical melanocytes had been found "as he expected", and that he would suggest leaving it at this point and just watching closely. He did tell me, however, that he had spoken to the pathologist, "with whom he shared great concern about me" and that the pathologist had suggested that a further biospy might be done on the same arm in the same area, but a couple of inches away from the original site, to make some comparisons. The idea is that if further atypical melanocytes are found, we might assume that it is truly a reflection of long-term sun damage and not limited to that particular area. He assured me that the original lesion has been completely removed. He also told me that melanoma in situ is a complete diagnosis, that it couldn't be described as a particular type of melanoma at this stage. That contradicts what I have read here and on other sites. I posted all of this the other day and got some repsonses which were helpful, but I received the pathology report today in the mail and it sounds a little more alarming. You will find it below.

I am asking for some help deciphering it and suggestions as to what I should do next. I am thinking of getting a second opinion and also wondered if anyone knew of a melanoma specialist in the Central New York area. I am also willing to travel. Both NYC and Boston are about 4-5 hours away.

Forgive me, but I am going to type out the entire patho report! Here goes....

"MICROSCPIC DESCRIPTION:

Histologic  sections on a fusiform excision of skin with adipose tissue at the base show epidermis with solar elastosis and mixed chronic stromal inflammation and a dermal proliferation of nevoid melanocytes within the superficial dermis transected at an edge. There is overlying irregular junctional melanocytic hyperplasia. Centrally, there is stromal fibroplasia and mixed chronic inflammation, compatible with scar transected along an edge. There is adjacent irregular melanocytic proliferation with rare pagetoid melanocytes within deeper levels.

IMPRESSION:

ATYPICAL JUNCTIONAL MELANOCYTIC HYPERPLASIA AND SCAR WITH WOUND REPAIR REACTION (SEE COMMENT).

COMMENT: The scar and the melanocytic hyperplasia are transected along an edge. There is a dermal proliferation of nevoid melanocytes which does not appear related to the overlying junctional melanocytic proliferation. Although these findings may represent the background changes associated with chronic actinic damage, the extent of disarray and atypia is very concerning. Comparison with adjacent similarly sun-exposed skin, not involving the excisional site, may be of diagnostic utility in further evaluation. Thsi specimen was reviewed in conjunction with case #....... This case was seen in consultation with Drs T Chang, J Bass and C Jaworsky"

It then attaches the previous reports from the previous excisions. It was signed by Dr H Winfield.

Thanks very much. It is all a bot scary. i know most of you have got much worse stuff going on and I appreciate your time and support.

Jennifer

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Linda J's picture
Replies 9
Last reply 8/23/2010 - 9:43pm
Replies by: Linda J, KRob, ValinMtl, Anonymous, Tim--MRF, W., ed_CT, TAC

It turns out that the "infection" that 4 other doctors saw, is in fact more MM.  Nine years after the first little bugger and this literally has come back to bite me in the butt.  I am just feeling completely devestated.  It just seems so big and there are lymph nodes involved.  Is there any hope??

I'm likely going to have to have some kind of skin grafting and a complete lymph node dissection along with radiation.  I was really looking forward to starting up a new school year (I'm a teacher and I was off last year with my son). 

Please, if you have any stories of survival after a big MM or words of encouragement - I am really at the bottom here and I don't know how to get back up.

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tricialeigh44's picture
Replies 1
Last reply 8/18/2010 - 10:46am
Replies by: lovingwifedeb

I just wanted to thank you all. My aunt found this forum and linked it to me. I have been trying to read as many posts as possible (with a 2.5 year old and 13 week old). My mom was diagnosed with stage 4 malignant melanoma  a few weeks ago (July 28 at 3pm to be exact)...who could ever forget an appointment like that.

I have learned so much from all of your posts and have been able to further investigate different therapies available to my mom. Most importantly I have realized that we are not alone in this horrible nightmare. There are good people all over the world fighting this disease.

 

I just wanted to thank you for giving me strength for my mom and my family. Keep fighting, there are so many treatments coming out for this disease and I am sure a cure is on its way!

Tricia

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lovingwifedeb's picture
Replies 3
Last reply 8/18/2010 - 4:37pm

Has anyone ever heard of this?

Husband's melanoma tumor (2 inches long) was in an enlarged lymph node in the groin area as a secondary sight, primary melanoma source was never found as such, not by any mole or freckle on body.

Surgery is completed. All other lymph nodes in surrounding area also taken and were all tested as non-cancerous.

Since Primary tumor has not been found, is it recessed? Occult? Just what has happened?

Suggestions for treatment?

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susanlee's picture
Replies 2
Last reply 8/18/2010 - 10:10am
Replies by: Phil S, babybluiz

I wanted to post a message to thank everyone for the words of support and encouragement you have given regularly. I have been viewing the posts on this board since my diagnosis mid-May 2010. I have acral letiginous melanoma of my left thumb. SNB and amputation of thumb were completed in June 2010. SNB was negative thankfully.  Chest x-ray, abdominal ultrasound and blood work were all within normal limits. Tumor size (7.9 mm) and mitotic rate (8/mm2) however were concerns for my doctors.

I am having a CT scan tomorrow to establish a baseline and will be starting Interferon this coming Monday. I am not sure how I will react and how quickly the side effects will impact me. I know it varies from person to person but would appreciate any information you could provide.

Thanks

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Joyce's picture
Replies 2
Last reply 8/18/2010 - 9:03am
Replies by: ValinMtl, triciad

Dick just had his scans and now has been NED for 4 years. He had his last surgery in June, 2006. He took the vaccine made out of his tumor and GMC-SF and then had 4 infusions on anti ctla-4. I have been known as Dick's wife (Dick stage 4) but I think that changed with the new format.

Joyce from MA

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