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 0

Lauren,

 

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

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jeanne harvey's picture
Replies 17
Last reply 8/7/2010 - 6:08pm

 

For 7 years, my sis, Jan Brockelman (JanB) fought a very courageous battle with dignity and persistence.  She lost that battle last night. Jan was an amazing wife, mother, sister, daughter and friend with a smile that could light up a room.   Jan wanted me to thank each and every one of you for your support, knowledge and guidance through this process.  This board was very special to her and to me.

 

Keep fighting, learning & laughing. Jan wouldn't want it any other way!

 

JanBsis

 

 

 

 

 

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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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ocularmonster's picture
Replies 4
Last reply 8/7/2010 - 7:08pm
Replies by: sselig, jag, LizzM

we may have a good option for my husband's treament of ocular melanoma that metastized to his liver.  SIRT at Emory in Atlanta.  It is readioembolization. Has anyone experienced this treatment?  Ocular melanoma is resistant to systemic chemo treatment, therefore there have been very few options.  He was not a candidate for liver resection so this blast to his tumors may work.  side effects are minimal and it only targets the liver....

feel like a million bucks, look good, thought I was in perfect health until a MRI revealed my liver monster.

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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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skysar's picture
Replies 11
Last reply 8/16/2010 - 8:03pm

Spoke with Dr. Hwu at MDA yesterday regarding the IPI/Temodar trial.  If you are enrolled in this trial at MDA,  I would be interested in finding out how you are tolerating side effects and also handling travel if you don't live in Houston?

Thanks for your help.

Sue 

Stage IV, lung mets

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Knutes Pam's picture
Replies 10
Last reply 8/9/2010 - 12:25am

Knute had gamma knife last wednesday for the two new brain mets.  We have started the weaning process from the steriods and hope to be able to get in an IPI trial in Sept.  He is doing well and is active on Facebook with the smaller screen provided by his I phone his visual problems are lessened.  A complete computer screen has too much visual information at one time.  It is a crazy side effect of his brain mets and their locations. We hope to get after those new lung mets in the near future.

Pam

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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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sharmon's picture
Replies 8
Last reply 8/9/2010 - 8:17am

Hi, 

Brent has been on the GSK MEK trial at MD Anderson since Feb 2010.  I keep reading about the B raf trials not being durable.  He will be scanned on the 16th of this month. This is month 7 for him.   He is on the highest dosage for the trial at 2.5 mgs .So far we have overall tumor shrinkage of about 30%.   The side effect of the rash is our worse concern.  He is now taking antibiotics for the sores.   It  seems that there is not a lot of info yet on the MEK  trial results from GSK.   I am trying to closely follow this forum but may have missed the information I am looking for.   I do not want to be scrambling to find a combination trial at the last minute, so any information would be helpful.  We have specifically asked our oncologist about a plan B and  he is dismissive or our question wanting us to wait and cross that bridge if we need to.

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ipi in DC's picture
Replies 6
Last reply 8/9/2010 - 12:08pm

Hi JIm,

Just checking in on you and how your first days are going, I meet with everybody today and start treatment on the trial tomorrow.

David

Fully rely on GOD & try not to ruin today by worrying about tomorrow

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Jydnew's picture
Replies 4
Last reply 8/10/2010 - 1:35pm

Hi,

Wanting to share the good news with those of you who might be just starting this scary journey with melanoma.  My husband had his semi-annual onco appointment yesterday and got the fantastic news that he remans NED.  Still seeing a little hypodensity on his liver, but it's been stable for at least 2 years now, so not a concern.

He was diagnosed at age 26 at stage iiia, 1.3mm depth on his right tricep.  Surgery to remove the lesion and an SNB revealing micromets, followed by surgery to remove all the nodes in the basin.  He has been NED ever since, with annual scans, semi-annual bloodwork and onc visits.

He is now 34 and has accomplished so much in life since his diagnosis, including the births of our children (one passed away, and the other just turned 1!), buying our dream house, earning a teaching certificate and a master's degree, and finding rewarding employment as a science teacher.  Life has been good to us, even through the toughest times...

Best to you all,

Wendy

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Rocklove's picture
Replies 20
Last reply 9/15/2010 - 12:46am

Had scan CT scan results today. There was a 70 to 80% reduction in overall tumor size from 1st Bio-Chemo round started in March 2010.

We finally crossed the main bridge and will start with maintenance protocal Friday August 13th.
Maintenance will be for 2 days per month with IL-2 infusion and will go on for 6 months then switch to every other month for another 12 months. There will be self injections of GMC-SF and IL-2 in between hospital visits.
The doctor said I should have no problem working while on the maintenence protocal.
 
I feel so blessed and fortunate getting this far with the treatment.
I appreciate all the prayers and positive thoughts from so many of you.
 
Rocky (Stage IV Liver Mets)

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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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JenM's picture
Replies 2
Last reply 8/9/2010 - 4:51pm

Hi,

I posted last week and was hoping to get a few more replies.  Posted above and James from Sydney suggested that I post with sorafenib in the subject--that it might attract others who know it by that name to respond.

I started the drug last Friday and wanted to know what side effects people experienced?  What helped?  If you had a positive response, how long did it take to see that response?

Thanks again,

Jen

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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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