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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Jydnew's picture
Replies 6
Last reply 7/31/2011 - 12:47am

Hi all,

My husband has his annual CT scan next Thursday, and as usual, scanxiety has set in early with me.  His oncologist says that this will be his last CT scan as the benefits of scanning do not outweigh the risks at this point.  He is 9.5 years out from a stage iiia diagnosis, and has been NED the entire time. 

I know it's magical thinking, but I have these terrible feelings that because the onc says this is his last scan, something will show up and it will be the start of hell.  My husband is looking forward to no more scans, but it worries me that we'll have no more real knowledge after this point.  I know that most/many recurrences are found by the patient, not on a scan.  I also know that at this point, it is much more likely that he will live the rest of his life melanoma-free.  However, I know that melanoma is a hiding bitch and that it can come back at any time.

I realize how whiny this must sound - worrying about things that could be, but that are not happening right now, when so many people here are going through real hell. 

Just needed a venting place to put some of my fear.

Thanks,

Wendy

wife of stage iiia survivor - dx Jan 2002. 1.3mm ssm on right tricep, no ulceration; snb found spread to 1 lymph node in armpit, complete lymphadectomy = NED since March 2002.

(I added these details for people who are newly diagnosed and are searching for long-term stage iiia survivors)

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Spread the word to smart melanoma researchers:  http://www.safefromthesun.org/about/innovative_research.html 

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Dynasysman's picture
Replies 10
Last reply 7/29/2011 - 10:28am
Replies by: Dynasysman, NYKaren, lhaley, TracyLee, Anonymous

Fierce Pharma led its daily coverage of pharmaceutical activity today with a story about BMS and Yervoy.  The story began:

 

Market watchers expected Bristol-Myers Squibb's ($BMY) new cancer drug to be big, but this fast? The company's second-quarter sales left Wall Street estimates in the dust and prompted an increase in profit forecasts, largely thanks to unexpectedly strong sales of the very-recently-approved Yervoy.

Indeed, the melanoma treatment just won the FDA nod in March, and it has already brought in $95 million, Reuters reports. "To come up with nearly $100 million in sales right out of the gate is fantastic," Credit Agricole Securities analyst David Maris, who had projected Yervoy sales of $20 million, told the news service. 

I suspect some will react by criticizing the high price of Yervoy therapy, but think about it this way:  Yervoy's strong start will motivate other BioPharma manufacturers to increase their investments in melanoma drug development, which is good news for all of us.

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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sharmon's picture
Replies 5
Last reply 7/30/2011 - 9:51am

Hi, Brent has cellutitus in his right leg from lymphedemia conplications.  A few days ago he found a lump that was tender.  The doctor has put him on antibiotics but they don't seem to be working.  I need some help.  I know we shouldn't wait and we see the doctor on Friday.  I know this is serious and could use some feedback.  Thanks

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Hello all,

I'm scheduled for lower left leg wide exsicion (+skin graft) and SLNB on 8/11.  I'm equally as scared of surgery/recovery as I am of outcome...has anyone had this?  FYI, I plan to have drainage tube for SLNB.  

If so, can you share your recovery/experience with me?  I'm the mom a busy 5 year old starting kindergarten, I have a f/t job and a husband that travels...not a good combo for bed rest.  

Also, do you think I'm at risk for lymphedema?  Other than this I am healthy and in shape..should that be an asset in recovery?

I am grateful for any feedback; many thanks!

 

Nicole

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MariaH's picture
Replies 9
Last reply 7/30/2011 - 1:06am

We have started the process for Dave to go to NIH on Tuesday, 8/1, for a consultation regarding the TIL clinical study.  He has already been approved to start IL-2 at Roswell on 8/15 if he does not like what NIH has to say.  He would rather be treated locally, but if the response rates we have heard about regarding this therapy are true, he will go to Bethesda.  His oncologist, Dr. Khushalani,  totally supported his decision, and put together all the necessary paperwork to fax down to NIH (even emailing me Rosenburg's latest report study on this trial last week for our reference). His PET result was good, indicating only the lymph nodes in the chest (bulky disease), and two very small hot spots - one a node by his collar bone, and one a possible sub-q near his original primary.  Both were too small to see on a CT scan.  His brain MRI was clean, and nuclear stress test and breathing tests were good.  On a side note, he was B-RAF wild type - so I am assuming that any future trials with B-RAF and IPI would not be a possibility for him.

Hopefully we will know by next week what his decision will be for treatment.  Because his disease is bulky, they do want him to start something quickly, as the nodes are pressing on some vital blood supplies that we do not want compromised.  Although, if they were he would have to have radiation prior IL-2, which is one of the options we had pursued.

Thanks to all of you have replied over the last few weeks - you have led us in the right direction.

Best wishes to all,

Maria & Dave

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We have started the process for Dave to go to NIH on Tuesday, 8/1, for a consultation regarding the TIL clinical study.  He has already been approved to start IL-2 at Roswell on 8/15 if he does not like what NIH has to say.  He would rather be treated locally, but if the response rates we have heard about regarding this therapy are true, he will go to Bethesda.  His oncologist, Dr. Khushalani,  totally supported his decision, and put together all the necessary paperwork to fax down to NIH (even emailing me Rosenburg's latest report study on this trial last week for our reference). His PET result was good, indicating only the lymph nodes in the chest (bulky disease), and two very small hot spots - one a node by his collar bone, and one a possible sub-q near his original primary.  Both were too small to see on a CT scan.  His brain MRI was clean, and nuclear stress test and breathing tests were good.  On a side note, he was B-RAF wild type - so I am assuming that any future trials with B-RAF and IPI would not be a possibility for him.

Hopefully we will know by next week what his decision will be for treatment.  Because his disease is bulky, they do want him to start something quickly, as the nodes are pressing on some vital blood supplies that we do not want compromised.  Although, if they were he would have to have radiation prior IL-2, which is one of the options we had pursued.

Thanks to all of you have replied over the last few weeks - you have led us in the right direction.

Best wishes to all,

Maria & Dave

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EricNJill's picture
Replies 57
Last reply 8/5/2011 - 5:31pm

I'm sorry I haven't been on here so much.  I just wanted to let you know that Eric is still here with us.  He is such a fighter.  He is less alert and his organs are slowing down but when he's awake he is able to talk to us.  I took some pictures of his leg last night.  They are very graphic and hard to look at.  His doctor said that the cancer is causing the tissue to rot. 

Thank you all for your prayers.  JillNEric

Video of pictures:  http://youtu.be/WhROjs27CDg

This is a blog post about the man I feel in love with:  http://www.melanomasucks.blogspot.com/

 

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lvitelli's picture
Replies 15
Last reply 8/2/2011 - 1:01am
Replies by: JerryfromFauq, lvitelli, washoegal, nicoli, Janner, Anonymous

I was recently diagnosed with Stage IIIA melanoma. I had a lymph node mapping the same time the melamona was removed from my left forearm. A microscopic cluster of melanoma was found in my sentinel node. That node and two others were removed. I still have my remaining lymph nodes under my left forearm. At this time, we do not know if there is any cancer in those remaining nodes. My doctor does not recommend surgery. In her opinion, the chances of melonoma outweigh the risks and negative effects of the surgery. Her recommendation is an ultra sound on the under arm every four months and a PET scan every six months. I've had one of each and so far, so good. I'm  just not sure what to do. She feels very confident in this treatment. I believe in her but have to wonder if I should do everything possible to make sure the cancer isn't there and doesn't return. I've adjusted my diet to eliminate the so-called bad foods while drastically increase the "good" foods. I drink green juices, eat lots of garlic, onions, kale, etc. I take an immune boosting multi viatamin along with D and C and drink three cups of green tea a day. Wondering if there is anyone out there with a similar situation? Anyone that had the surgery not knowing if there was any cancer in the remaining lymph nodes and the effects being felt now. I am very positive and optimistic but also want to do whatever I can to watch my beautiful 4 year old grow up.

Thank you

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Manubuzzi's picture
Replies 8
Last reply 7/29/2011 - 10:30am

 

Greetings to all 
 
It has been approximately 2 months since I have written, although I have been keeping an eye on this site to see how everyone is doing.  We have really had 2 really great months, and I have been taking advantage of this time to be with my mother and enjoy her company.  After the last surgery that my mother had to undergo, to take out part of her skull that was infected, everything got better!
My mom is great!  Always in high spirits and so so strong, she's walking :) for short periods, but walking all the same!  She's always positive with a lot of faith that everything will turn out well.  She is completely lucid and has had no side effects of 4 seperate sessions of Temodar.  This last few months has really renewed our hope!
 
Now, the next step is to start her on IPI.  Here in Argentina, this is not so simple- the drug hasn't been approved, and only a handful of doctors are allowed to administer it.  Also, she has to do several things in order to be able to even attempt to have the treatment.  We have a lot of hope for this new treatment.  We know that it's going to be an uphill battle, but to see her like this, so strong, it's almost impossible to imagine a negative outcome.  We are from a small town, far from the city of Buenos Aires.  And to do this treatment means moving to Buenos Aires for 6 months, not an easy thing to do.  But we are grateful for the chance... 
I want to thank all of you and tell how things were going.
I always want to write in different posts.. but my english is not the best (this was written with my girlfriend's help) and I do not want any misunderstanding caused by my bad english, especially when we are talking about difficult issues.
I continue praying for all of you who are fighting this terrible disease. All the best to you
 
Manuel
Patient son
Argentina

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CJK's picture
Replies 4
Last reply 7/28/2011 - 4:09am
Replies by: CJK, MichaelFL, Janner

Hi all

I've been following this forum pretty closely since I was diagnosed with melanoma about a week ago, and thought I would ask for some help understanding my histology report. 

I had a skin shave biopsy of a mole on my shoulder in June.  I think it grew over the course of about 6 months (it bled in the last month or so).  My GP thought it was a pyogenic granuloma - hence the skin shave biopsy.  It was nodular malignant melanoma.

I had a CT scan but have not  received the results.  I am scheduled for my WLE and SNLB in a couple of weeks and I know the results from these will determine the staging.  In the meantime, I am trying to better understand my situation so I can prepare myself.  If possible, I would like to know the good and the bad signs of the report.  Here are the details:

Macroscopic description:

10 x 3 x 7 mm

Histology:

The skin shave specimen shows an extensively ulcerated malignant melanoma in the vertical growth phase.  It is composed of variably sized nests and sheets of pleomorphic melanocytes which lack maturation with depth.  Deep dermal mitotic figures are identified and occasional cells show cytoplasmic melanin pigmentation.  In this sample, the depth of invasion is at least 3.2 mm.  The presence of a junctional component is difficult to assess due to epidermal ulceration.  On immunohistochemistry, the tumor cells are positive for S1oo and Melan-A and show focal positivity for HMB-45.  It is widely present at the margins of this shave sample.

From what I have read, a 3.2mm ulcertated tumor is IIB, is this correct?  Can anyone make sense of the sentence about the 'variably sized nests'?  Is it a good sign that the pleomorphic melanocytes lack maturation with depth?  I'm not certain if it is abnormal, but when my GP was removing the tumor via skin shave she said it almost fell off.  Granted, I had bumped my shoulder against a wall the week before and done most of the work for her, pretty well ripping the mole out of my arm.  I didn't receive the numerical figure of the mitotic rate, but is there any indication from the description in the report?  Finally what is the significance of a junctional component or the presence of melanoma at the margins of the shave sample?

I realize there are quite a few questions here (of course, it's not the half of them).  Any assistance would really be appreciated. 

 Thanks

 CJ

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AZ_Gal's picture
Replies 27
Last reply 7/28/2011 - 11:50pm

Can anyone tell me if there is a stage that goes along with clarks level? or how i find it out.

I was diagnosed with melanoma on my upper left shoulder blade in April of 2011.  I had had it removed by my PCP two weeks before. when the results came back I was told the margins were clear and that i just needed to see a dermatologist every 6 months from here on out. But now I'm seeing surgeons for more biopsies and to have MORE skin taken from around my original incision. WHY THE HECK DO I NEED MORE TAKEN IF THE MARGINS ARE CLEAR?

They told me today when I had my consult with the surgeon that not only do i need more skin taken from the original site but that i have to have my lymph nodes biopsied in my neck and/or armpit. Hmmmmmm. That sounds like a total joy!....NOT!

They also told me that my spot was .99mm thick boarderline for hardcore treatment. so they are playing it safe since I'm so young and going the more hardcore route.

The Dr. says I grow Melanoma. It doesn't just start as a mole like most people.....and just grow a spot of melanoma. How awesome! I'm a petree (sp?) dish for this crap! WTH?!?!

Any input would be great! THX!

Kim

Morenci, AZ

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DeniseK's picture
Replies 9
Last reply 7/27/2011 - 8:42am

Hi Everybody! 

I just changed my profile pic to show you the pic of these red bumps that have come up in the past couple of days.  They're firm to touch and resemble a pimple without a head.  I talked to the oncologists office today and told them of the bumps but still have appointment scheduled for 2 weeks, August 9th.   I have no idea what to look for as far as a recurrence.  The bumps appear just above my scar line.  Thanks for all your help!! 

Denise

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

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MaryBeth and Jeff's picture
Replies 12
Last reply 7/30/2011 - 4:41pm

What an emotional day today. Some of you may have read my previous post where my husbands medical oncologist felt he was a Yervoy non-responder......Well... we met with the Neurosurgeon today to go over the findings of yesterday's MRI. Of the 19 brain lesions most are gone and the remaining few are barely visible!!  The neurosurgeon was amazed to say the least. He said he actually expected to see many more new lesions as he felt the brain mets were very aggressive (an increase from 5 lesions to 19 total in 2 1/2 weeks)  and he has never seen 19 lesions respond like that. He attributes this to the Yervoy! (per neuro he hasnt seen Gamma produce such amazing results on so many lesions)Granted my husband is still fighting the ever increasing tumors, nodules and sub q's on his neck, back, legs, arms etc. which seem to have appeared rather rapidly after his 3rd Yervoy treatment. (He finished his 4th and final Yervoy treatment on July 15th). His neuro does not feel these are immune responses...but hey, let him stick to his gamma knife expertise...because the medical onc was mistaken in determining my husband was a Yervoy non responder. I give all the Glory to God and continue to pray for all of the fellow warriors who are fighting this insidious disease. 

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Lisa13's picture
Replies 7
Last reply 7/27/2011 - 9:46am

Dacarbazine has not worked for the mets in my lungs unfortunately. Even though I'm disappointed, I'm happy to report that the melanoma is nowhere else in my body, no new tumours appear in my lungs and the ones in my lungs have only grown a wee bit.  It is a little comforting knowing that since the end of April, the mets in my lungs are slow growers  which puts me in a good position for Yervoy which I'll be starting in 2 weeks (pending brain CT on Friday).  

My oncologist is the lead investigator on the trial for IPI here in Toronto and knows his stuff. He reminded me of Jimmy B with all his scientific data which confused the heck out of me :)  Clinical trials are the only way to get ipi here in Canada and I'm lucky to be 15 minutes away from the hospital! Hope is certainly not lost!

For the next week, I'm going back to my vitamin/supplement protocol (oh, how I've missed you!) and gearing up for Plan B!   

Lisa

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

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