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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I was wondering if we  had any other patients / lurkers / caregivers dealing with leptomeningial mets.  I know Kevin from Atl and I have them, right?  Hope you're doing well Kevin - I'd love an update when you feel like it.  We can compare notes on my intrathecial IL2 vs. your ipi plan.  Have you been able to continue that in TN?

I am still at once a week rounds (one day admissions inpatient each week for the dose).  But I am getting close to moving to once every two weeks.  At least that's MY plan, lol.  Dr. Papa may have other ideas.  I know he's had a crop of patients who have had some success with this.  I'd love to hear from some others who have done this.

The treatment is definitely tolerable in comparison to bio chem.  Of course with bio chem as the standard by which all are judged it's pretty hard to imagine ANYTHING that wouldn't rate as "well, at least it isn't bio chem!".  I stay in patient for 23 hours and then have a few days at home as a vomitting, moaning vegetable, then a few days of more normal couch potato "at least she's here" kinda days.  Then if I'm lucky I have a day or two of "good" productive unmedicated days.  Just in time to start all over!  If I go to another week off then it will be great! 

Side effects are pressure headaches, muscle aches, severe dry mouth, vision changes, naseua, dizziness, etc.    Now I think it may be screwing with my hearing - everything sounds muffled, like when you water in your ears.  Or have ear plugs in so you hear your own voice REALLY loudly in your ears and have no idea if you're volume appropriate or shouting at people.

I am so thankful that this treatment seems to be working.  Last MRI showed some shrinking of the LMD and everything else is still stable.  No luck getting back on the GSK but so far so good with the other body systems.  So that issue is on the backburner for now.

Thanks again to all my wonderful MPIP buddies for yyour love, encouragement and prayers.  Sorry so bad about keeping my CarePage and facebook updated.  And don't even get me started on THIS debacle.  I'm trying to get used to it but hate all the changes and hope we can all keep each other up to date on the latest developments.

Love,

Amy

 

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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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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Jan in OC's picture
Replies 8
Last reply 8/28/2010 - 1:39pm

My husband  has been on Hoffman/Roche BRAF trial at UCLA since early Feb '10. After the first month, we started seeing red "bumps/splotches" that would appear on his arms or legs, they would swell up, be sore and itchy, then disappear a few days later.  Doc said it was a rare side effect of the drug. No worries!  But, since this weekend, those spots have gotten very large and developed blisters on them. Dirk was very uncomfortable.  I emailed the Doc  this morning and he said to stop the drug, has scheduled a CT scan and visit for Wed.  Anyone else experience this??? Just a little worried cause he has had a bad week or two, really tired and in pain.  He says all the "lumps" on and under his skin are hard and barking at him. 

Jan (Dirk's wife)

stage IV,  

WLE in Aug'09 arm and groin lymph nodes

Nov '09 new external mel on right torso 

Dec '09 mets in liver, lungs, kidney, R shoulder bone

laughter is the best medicine

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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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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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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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Will be in the Colorado
Springs and Buena Vista areas for August and much of September.  Like to meet follow warriors in person.  Feel welcom to email me at tjellis@erols.com.

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

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Nebr78's picture
Replies 6
Last reply 8/13/2010 - 8:10am

I just finished my rounds of Temodar.  Then they did a CT Scan.  Dr. said nothing was growing.  I asked about a specific spot.(lymph node by

arm pit..  They called 2 days later and said my Melanoma has grown 30%.  Thanks a lot for correct comparison. What is use of taking treatment

when you get this kind of results. I have 3-4 spots in me. (lymph node, lung, back, kidney,side of face)   Now Dr. says he wants to wait for this Ipilimumab to be

approved by FDA.  I have hearts disease (over 40 yrs.) so don't know what I can take.  I wish I knew what would happen if I did nothing. The

lumps by the arm pit is about size of large 50 cent piece, and one by ear is same or alttle larger.  I have changed Dr. once and will not change

again. I will not spend what estate I have running around the country letting these Doctors make guesses on what to use.

Has anyone used this Ipilimumab medicine?   What are side effects?   I don't have any arteries left in heart, only bypasses so I  get Angina

very easily.  I am 78 yr. old male so maybe there is nothing that can be done and my Dr. just won't tell me that.  Any info. will be appreciated.

Thanks,   Retired in Nebr.

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Kimmer's picture
Replies 2
Last reply 8/3/2010 - 11:11pm
Replies by: King, Carver

I had the SNB/WLE and skin graft that, I think,  was the true beginning of  my journey through melanoma.  I remember finding the board and being too afraid to even look at the posts as I am superstitious beyond belief! 

SO six years, lost pathology, BCC, one recurrence, SCC, 2 atypical moles and dozens of biopsies have put me in place where fear is a bit of a more tame monster.  My dear friend, Carver, once said that somebody has to be on the good side of the statistics.  Goes to show how powerful words can be, 'cos that one kind statement gave me a completely different perspective.

In all honesty, I can say that this site helps people.  It is different now, but the fact remains that it is still here and there are still so many people here with so much to give. 

And I thank you all from the bottom of my heart for your support and friendship.

Take good care, K.

PS I recently created a profile for the first time...I always thought that it would make it all to real to have an archive or something...geez, superstition and all...  Amazingly, I didn't blow up.  Silly, silly me!

And remember, no matter where you go, there you are. Confucius

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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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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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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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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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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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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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