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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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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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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Lisa13's picture
Replies 6
Last reply 7/29/2011 - 9:02am

In 2 weeks, I start Yervoy after failing dacarbazine. I have a couple of questions regarding ipi in general:

1. My tumours in my lungs have been growing very slowly the past 3 months. If I didn't respond to ipi, what is going to be my options if these tumours grow more while waiting for the scans? (I'm BRAf -)

2. With lung nodules, did anyone experience fluid in the lungs or other symptoms while the inflammation took place?

After I met with my onc, I realized I hadn't asked these questions and won't see him until next week. Just thought I'd reach out to anyone whose had these experiences.

Lisa - Stage 4

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

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Anonymous's picture
Anonymous
Replies 10
Last reply 7/29/2011 - 2:01am

I have had disagreements with some people using the Anon id, but I do support it's availability.to be used.  It has many good usge to.  Many times ladies hve come on withmelnome problems in the genitals and ben leary of giving out much info.  This usage has benefited many.  Most of them have learned that it is safe to talk about intimate locations more openly then they ever imagined,  They r not alone, but they might not have posted if the Anon was not available at the start.  I know a couple that have rubbed some others such that some would be negative just because that person posted. 

Some discussions of sex for melanoma patientshave arisen.  I even posted as Anon in those discusions.  Those posts were not negative nor "dirty", because sex is not a dirty word.  It is a vital part of most peoples life and needs to be openly discussed here at times.

So while I do disagree with the recent negative Anon comments, I do support its ontinuation and am very proud of the way Jill and Eric was supported for the way they hve conducted themselves in this whole affair and for being the fine people they are.  I suspect the supportive comments overwrote the negative feelings that were automtically felt by Jill.

 

Not really Anon.  Just trying to get your attntion here. 

JerryfromFauq

I'm me, not a statistic. Praying to not be one for years yet.

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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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Kim K's picture
Replies 16
Last reply 7/28/2011 - 11:38pm

Had scans yesterday, all is clear.  Next check in 6 mos.  I don't know why my onc also wants me to see the surgical onc next time, nothing to cut on - lol.  Whatevers.... perhaps it is just to cheer the surgical onc since some of us will be the one's extending the survival tail of stage IV, and I happen to be one of them *fingers crossed along with everything else*

VATS - 2/10

High dose IL-2 - 23 bags 5-6/10

NED oficially 7/10

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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

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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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debandmike's picture
Replies 3
Last reply 7/27/2011 - 11:19pm

Today was Mike's day to return to Karmanos for another week of IL-2. This will be his final week of treatments for awhile. Doctor seems to think he is responding well to the drug with minimul side effects.

When this week is done Doctor says it is best for us to wait and watch since the IL-2 can take awhile to work. Has anyone else been told the same thing? One thing I have learned over the last six months or so is that this beast is something that is always on or atleast in the back of your mind. With Mike and I being told back in February that he had less than a year to survive, I'd  say we are ahead of the game somewhat. What a blessing for us.

We are hoping to be able to enjoy the rest of the MI summer hoping Mike will feel much stronger and not as tired so we will be able to enjoy some sort of get a way which we very much need.

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alexandra's picture
Replies 13
Last reply 7/27/2011 - 8:57pm
Replies by: alexandra, bcl, Janner, Anonymous

Hi -

I got my results today. The doctor's office said melanoma stage II. She said that I should come in today to see her. Unfortunately I'm away from home and can't make it until next Monday. The doctor was totally fine with that and said that I can come in even in 2 weeks. They couldn’t tell me any details over the phone and the only thing they said is that this is a very early stage. Now, I'm schedule for an appointment for next Monday and the doctor said that I'll have more skin removed. I'm worried, because everywhere I read they say that if it's a stage II I should have a biopsy of my lymph nodes as well. She never said anything like that. She's also a dermatologist and I'm wondering if the second procedure shouldn’t be done by a surgeon. I'm sorry for asking so many questions, but I have a 2 month old baby and a 3 year old and I'm really worried.

Also, I'm from Canada and I'm wondering if they have different procedures. Like for example they don't refer you to a surgeon until a further stage.

Thank you so much for your replies!

Alexandra

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moore's picture
Replies 4
Last reply 7/27/2011 - 4:58pm
Replies by: Harry in Fair Oaks, Anonymous, moore

I am about to finish a year of Leukine injections.  I contracted MM in 2004.  In the past 3 years I have had a lung resection and a spenectomy.  Leukine was ordered to strengthen my immune system and, hopefully, prevent melanoma cells from attaching to other organs.  So far, so good.  Latest scans are clear.  My wife is terrified that lesions will reappear after I go off of Leukine.  Do other MM patients have experience with Leukine?

Moore

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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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b767man's picture
Replies 8
Last reply 7/27/2011 - 2:37pm

Seeing Oncologist Wednesday to make a decision on treatment.  Stage 2b, Clark V, 6mm.  Any thoughts from those who have done it would be appreciated.

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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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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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