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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JenM's picture
Replies 2
Last reply 8/4/2010 - 8:48am
Replies by: JenM, James from Sydney

Hi all,

Some of you have replied to my previous posts---thank you so much.  I just thought I would re post again and see if I could get more replies.  I started Nexavar last Friday.  Wanted to know what side effedts people experienced?  If your response was positive how much time passed before you started to feel better?  Was it 2 weeks or longer? 

Thanks,

JenM

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We’ve received a request from a reporter who is looking to speak with women who have previously been diagnosed with advanced melanoma and who currently live in DC or the surrounding area.  If this sounds like you, and you’re available this Sunday evening (Aug. 8), please let me know by sending an email with your contact information to: tturnham@melanoma.org.  We’ll follow up with more information.  Thanks.

 

Tim

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Linda/Kentucky's picture
Replies 5
Last reply 8/4/2010 - 3:23pm
Replies by: JenM, wolkies, jag, donaldg

Just wondering if anybody has any information on an oncologist at Sloans-Kettering hospital in New York?  Thanks

I can do ALL things through Christ who strengthens me! Phillipians 4:13

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In Stage IV melanoma patients, a high percentage of Tregs appears to be associated with shorter survival.

Remember I said "Blame it on the Tregs!!!"

Received 12 February 2008 published online 03 June 2008.

Background

Melanoma often elicits a profound immune response, and this response has been exploited by various immune therapies. These immunotherapies ultimately fail, however, and advanced melanoma is uniformly fatal, suggesting the development of an immune escape mechanism. In this study, markers of immune escape including regulatory T cells (Tregs), dendritic cells (DCs), and TGF-β were evaluated in 14 Stage IV melanoma patients and correlated with survival.

Source:http://www.journalofsurgicalresearch.com/article/S0022-4804(08)00344-2/abstract
 

Just follow the Science!!!!!!

 

Results 

Stage IV melanoma patients had a doubling of regulatory T cells compared to both normal subjects and stage I melanoma patients. There was a significantly higher number of DCs in all melanoma patients compared to normal subjects. Stage I melanoma patients had a significantly higher number of pDCs than normal subjects, and all melanoma patients had a higher concentration of mDCs than controls. Serum IL-4 and IL-10 were not detectable but serum TGF-β levels were significantly higher in stage I and stage IV melanoma patients compared to normal controls.

Conclusion

 Advanced melanoma is associated with increased numbers of circulating dendritic cells and regulatory T cells. These data suggest that melanoma induces immunosuppressive DCs and regulatory T cells in the systemic circulation.

Source:http://www.springerlink.com/content/k0gk8740u3n75744/
 

 

Take care

Jimmy B

 

melanomamissionary.blogspot.com/

 

 

 

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SarahS's picture
Replies 2
Last reply 8/4/2010 - 7:13pm
Replies by: SarahS, jeanne harvey

Hi everyone,

I'm wondering if anyone has any suggestions for an excellent derm and onc in the Kansas City area? My husband and I are currently relocating to Overland Park, KS from Massachusetts this summer and I'd really like to line up my doctors as soon as possible. I've unfortunately had several primaries since 2003 (two at stage 1, one at stage 3a), so I'm looking for a very thorough derm and also an onc who specializes in melanoma.  I'm willing to drive up to an hour away or more for the right doc.

I'm seeing my onc in Boston on Wednesday, so hopefully he'll have some names for me, but any suggestions by patients would be greatly appreciated!

Thanks in advance for your help!

Cheers,

~SarahS

Never say never...

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JenC's picture
Replies 6
Last reply 8/5/2010 - 11:20am

Today we got the results that my husband is positive for the BRAV600E mutation and is so far eligible for the Roche trial.  Tomorrow he goes in for scans and blood work then if he passes, he'll get randomized next week.  This is such a relief since he has numerous subcutaneous mets in his throat, face and neck which is causing him to be in pretty severe pain.  I am so happy that he can start getting some treatment - even if it is dacarbazine, since he has been feeling these tumors since April and we've been told they are inoperable in the beginning of July.  Waiting is so hard!  Please pray that his scans are good and that he can move forward!  Thanks!

JenC

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EricNJill's picture
Replies 11
Last reply 8/5/2010 - 12:34pm
Replies by: Anonymous, EricNJill, ValinMtl, Sharon in Reno, MichaelFL

I put together a list of resources that I found here on MPIP.  I posted it to my blog and wanted to share it with you.  I can't take credit for it, I just compiled all the information.  I hope you find it useful.

www.melanomasucks.blogspot.com

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I was able to get in chat for a few minutes on the third. (My time and computer availability problems) NOT MRF problem. 

However when i next got to a place i could get connect to the Internet again, and before I started opening a window to the MRF, I started hearing the chat room bonging.  I then had the following occur.

 

JerryfromFauq: Why was my name on here when I came on line, (not to the MRF board).  I
heard the bonging , but had no windows open to the MRF.  Went to the off-topic BB and it said
I and Laura were in chat.  I had to go to the MRF website and log in then click "

JerryfromFauq: "Click here to chat"  When the chat window finally came up, Laura was gone.

 I have not been  on line anywhere for a couple of days!

Jerry

 

PS do  like some of the additions like the spell check and images.

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

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JerryfromFauq's picture
Replies 9
Last reply 8/5/2010 - 3:48pm
Replies by: JerryfromFauq, Sharon in Reno, kwahlbin, Anonymous

Can y'all maake it so that when we "return to BB" we return to the page we were viewing when we opened a post?  Going back to page one each time is irksome.

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

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IntoTheWild's picture
Replies 15
Last reply 8/5/2010 - 5:40pm

Hi All,

I'm not too happy to be here, frankly, but very glad to know I'm not alone.  I was diagnosed with a melanoma on my arm, near my elbow.  The pathology report is this:

Left Arm
Malignant Melanoma
Note: Preliminary Depth: at least 1.6mm to base
Preliminary Level: at least Clark's Level IV, to base
Ulceration: Present
Regression: Not identified
Lymphovascular invasion: Not identified
Mitosis: 5-7mm(2)
Tumor infiltrating lymphocytes: Not identified
Margins: The deep margin is focally involved; the side/peripheral margins appear negative.

Clinical Impression: DF
Gross Description: 8x7x1 bisected

Microscopic Description:
Original and multiple deeper levels were prepared and reviewed at dermatopathology consensus conference. Sections shows a shave biopsy of skin with focally ulcerated epidermis in the center of the biopsy, covered by a scale crust. In the dermis there is a proliferation of large slightly pleomorphic cells with vesicular nuclei and abundant pale cytoplasm. In some areas these cells are arranged in nests whereas in other foci they form long fascicles. Focally, there are similar cells at the dermoepidermal junction. The cells do not mature with their descent into the dermis. Numerous mitotic figures are seen throughout the lesion including the deep portion of the lesion. A panel of immunohistochemical stains is performed. The cells are positive for S100, NGFR, and Vimentin. They are negative for Melan A, HMB-45, cytokeratin 116, CD10, and Desmin. MIB-1 labels numerous nuclei within the lesion.

So I go see a surgical oncologist in a few days but some questions.  From what I've been reading around the web, some things on this report look bad (like the high mitotic rate) and the fact that they are calling this a "shave biopsy" which, along with the mitotic figures in "the deep portion of the lesion" looks like I still have more to take out.

I'm thinking the best this could be would be Stage II at this point but obviously they'll have to try to get the rest of the cancer.  My question is does this pathology report indicate a sentinel node biopsy should be done?  And from what I'm reading, results are likely to be positive because of the high mitotic rate... so does that mean they automatically take out the whole cluster of lymph nodes?

I know I should (and will) be asking the specialist about all this but just wanted to be prepared. 

Thanks for any and all help and advice!!  I'm a bit worried but I am also a realist and a fighter... I like to know what I'm up against. :)

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Anonymous's picture
Anonymous
Replies 0

Lauren,

 

I pray for Jenna daily..how is she doing?? I hope that she is responding to IPI.

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skysar's picture
Replies 1
Last reply 8/6/2010 - 4:39pm
Replies by: Jim in Denver

Thanks for your input.  In addition to MDA I have an appointment with Jeffrey Weber at Moffitt in Tampa next week and will compare notes.  If MDA is the place, I have a starting date of 9/3.  We will see what Moffitt has to offer.

I would like to continue receiving your input....progress, side effects, etc.

Take care.

Sue (Atlanta)

 

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MaryBZ's picture
Replies 1
Last reply 8/6/2010 - 7:11pm
Replies by: KatyWI

Hi Katy,

 

I noticed you live in Appleton.  I am in Little Chute (we're practically neighborssmiley)  Just wondering if all your follow up appts are in Milwaukee or if you see an oncologist in Appleton?  I did get a second opinion from Dr. Albertini in Madison (loved him-very caring and compassionate) but I didn't want to drive to Madison for all my follow ups so currently I see Dr. Guenther (smart man but our personalities don't "jive") at AMC.  Just curious cool

 

Mary

You don't know what your future holds but you know who holds your future!

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KathieG's picture
Replies 21
Last reply 8/6/2010 - 9:39pm

 After a courageous fight of five years my 59 year old husband has lost the battle.  It was an honor to help him leave this world, at home, with hospice to guide the way.  This board has been my support, my guide, my hope and my despair for 5 years.  I thank each and every one of you who come here every day and offer your knowledge and love to people you have never met.  Please tip a glass for Bob Green tonight and wish him safe travels.

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Jan in OC's picture
Replies 4
Last reply 8/6/2010 - 10:10pm
Replies by: Andyb, lilred75, Jan in OC, JenC

 We are planning to move soon and are considering Oregon.  Anyone from there that has a Melonoma oncologist?  Where do you get treatment if you live in Oregon? Husband (Dirk) is currently Stage IV in BRAF clinical trial at UCLA.

laughter is the best medicine

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