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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awg's picture
Replies 5
Last reply 5/29/2012 - 2:10pm

I am glad to report that I am scheduled to complete my last sub-q interferon injection around July 18th. Overall I tolerated the treatment well and had only minor symptoms assoicated with interferon over the last year.

I was able to work full-time during the treatment.

My last PETCT was in December 2011 and it was all clear. I am schedule to have additional PETCT in September 2012.

I am thankful for this form and the depth of information and encouragement that is available here.

 

Regards,

 

Allen

Stage III

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himynameiskevin's picture
Replies 16
Last reply 5/31/2012 - 11:55pm

Tomorrow will be exactly 11 weeks on Zelboraf. And over a month completely steroid-free. So far so good I think. Side effects have been tolerable.. random joint pains, some worse than others that seem to switch up locations every couple days and the bottoms of my feet feel bruised. Some mornings upon waking, I can barely walk on them, but usually as the day goes by and the more I walk, the pain fades. Today for the first time, they almost feel fine. That's about it for noticeable side effects. My PET/CT scan done in mid April showed shrinkage and less activity in all the lung tumors. And nothing new anywhere else. I had an brain MRI done May 1st that showed continuous shrinkage and fading in the tiny brain tumors. Most likely thanks to the SRS. But there were a couple miniscule questionable "spots" that weren't SRS-ed that have shrunk or disappeared as well, definetly attributed to the Zelboraf. So I'm thankful. So I'm 11 weeks in and no scheduled scan set... I'm sure I'll be having another Brain MRI in the next month or two. As they stretch out the time between scans, I can't help but worry from time to time about this stuff's effectiveness fading away and what options will be left and/or available. But hopefully it won't resort to that. Thanks to Dick and a couple others on here who seem to be having a lasting and durable response, you give me hope. I think about you all, multiple times, daily. Today is actually my birthday.. I made it another year. :) Thank you all for the ongoing support. The help and hope is the best gift I could ask for. 

-Kevin 

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mommydog's picture
Replies 1
Last reply 5/22/2012 - 2:18pm
Replies by: himynameiskevin

My husband is in the hospital due to infection of unknown origin, raised liver enzyme levels (bilirubin) and excruciating pain in his lower back, sacrum. We thought this might be due to a new met in the sancrum, but nothing has changed in that area ( there is a met, but no noticeable change). Has anyone had experience with Zelboraf causing either of these conditions, that is liver problems and/or lower back pain?
Thanks
Deborah

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Snickers60's picture
Replies 1
Last reply 5/22/2012 - 12:16pm
Replies by: Linny

I am happy to post that after a month on ZELBORAF, Wayne has no more fever !   He does have some FEET PAIN and JOINT pain that is pretty bad, but

we have found him some relief doing Epsom Sats Soaks.    He is also taking a B-100 vitamin which seems to have helped him a lot with energy.  Also

taking Tumeric.   His hands and feet swelled so much over the weekend he couldn't wear shoes.....but it is slowly going down now.  He is still working.

His tumors had SHRUNK from 2.6 to 1.8 and from 1.6 to 1.1 at last weeks MDA visit and CAT SCAN !    YESSSSSSSS and AMEN it's working !!!!!   Hope you all have a tolerable day with limited pain and side effects.

Nancy (devoted wife of Warrior Wayne)

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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rrrule32's picture
Replies 6
Last reply 5/23/2012 - 8:28am

Hello all, my name is Travis and my wife Kaitlyn has Stage 4 melanoma.  She is 23 years old.

I've been reading about a highly effective drug called Dabrafenib.  It has not yet been approved by the FDA.  I think we all need to ban together and get on the FDA to get this drug approved so it can start saving young lives.  

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Replies by: Anonymous, john partrick michael murphy

https://www.facebook.com/home.php#!/media/set/?set=a.2481994291537.2113457.1302967109&type=1                             this is his Melanoma Story in pictures. Pray for Steve.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Lisa13's picture
Replies 11
Last reply 7/20/2012 - 1:03am

Next week, I'll be having my first craniotomy.  For those who've experienced them, how long does it make you feel better? 

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

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/1/2012 - 11:50pm
Replies by: Swanee, Janner

Hello,

I am Stage 1b patient with 8 years post diagnosis. I just accidently discovered a lump in my hip and I am scared to death about possible subcutaneous tumor. I found it when I accidently touched the area, it is completely under the skin, not protruding from the sking and nothing is visible on the surface. This lump is small (about 5 mm?) but I cannot completely feel it's shape (take between my fingers); not sure if it is attached to something deep and whether I can move it around. It is not hard but ruther firm. Well, I made an appointment with my melanoma specialist in few days but this waiting time is killing me. I continue to touch this area.... What is might be???? I am scared.

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eerye70's picture
Replies 10
Last reply 5/22/2012 - 10:46pm

Ok, i have an appointment today. I had in situ removed from right shoulder november 2011. Now i have a mole on my right leg that has changed and i am seeing the dr today. I also have an enlarged lymph node on that side and pain under the arm on right side. I have found out in the last week that i have an uncle and maternal grandmother who have had melanoma, my uncle died from it. I just think i am wandering into that crummy place where you are super aware of everything. That every pain, every lump or bump or sore throat or headache is going to make me freak out.

I have a headache every day, literally for a solid month. But it is also the worst allergy season on record. I am so tired i literally want to sleep every single day. all day long. I just think i am starting to get too paranoid.

I tried to look up some pictures of subq melanoma to see/compare for comfort. But all i see are the typical moles with changes and that is not helpful, because my mole looks very much like some of them. I cant decide if my lymph node is a lipoma or something else.

 

I dont know, but how do you get through it? How do you turn off the mind, how do you stop dwelling on these things and stop obsessing over it? I am so much better than i was when first diagnosed. I sleep at night now. I no longer have anger and anxiety, or not so much anxiety. the anger is alot better.

but in order to enjoy the benefits of being in situ, i really need to be thankful of in situ, but if all i do is focus on the "holy craps" how do i? any advice, suggestions?

Also, i didnt tell my family. Aside from my husband and a few close friends, i didnt share with the sibs or mom. I just don't want to answer a ton of questions about it. Did anyone else keep this sort of thing to themselves? any thoughts? I just feel somewhat lost, What now?

Debbie

Time to put on your big girl panties and deal with it!

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benp's picture
Replies 14
Last reply 5/28/2012 - 1:22pm

Hi, 

I've been on GSK's BRAF inhibitor since July 2011. After experiencing severe abdominal cramps several weeks ago, a CT showed a small bowel intussusception, which is (in adults) usually caused by a tumor. 

Long story short, I underwent surgery to examine the cause, and a small bowel met measuring 3cm was removed. Bowel surgery is surpsingly much more "uncomfortable than a cranitotomy!

My brain MRI also showed likely progression in 1 met, so it was suggested that I receive tratment with Gamma Knife on all my brain lesions. I completed this today. Not a very pleasurable experience, though very good to have done. 

Currently I'm staying on the drug, awaiting for a vacancy (!) in another trial. Sometimes it seems strange that we're now experiencing an explosion in therapies for melanoma, though it's still very hard to find a place in a good trial.

Thanks for reading, 

Ben.

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deardad's picture
Replies 1
Last reply 5/21/2012 - 3:35am
Replies by: deardad

Hi, haven't heard about Dave from Singapore for quite awhile, wondering if he doing ok?

Nahmi from Melbourne

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/2/2012 - 4:46am

I think most cancers talk about 5 and 10 year survival rates.  I'm not sure, but I think they do 5 year because with some cancers if there is NED after 5 years, doctors will say they believe the person to be "cured."  Of course, we know melanoma does not fit nicely into that category because it can come back after many many years.  So, then, why for melanoma don't they put survival rates down for 15 or 20 years?  Like, an in-situ or 1a or 1b 20-year survival rate? 

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Kelly7's picture
Replies 10
Last reply 6/1/2012 - 12:12am

Has anyone else had this side effect? My brother is between his 2nd and 3rd dose and most of the hair on his head has thinned out and almost gone. Anyone else? I know there are way worse side effects, just wanted to see if anyone else has had this one-

Thanks:)

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/20/2012 - 5:05pm
Replies by: LynnLuc, Anonymous, Jeff's Mom

Hi Bridgette,

 

I hope the meetings with Dr. Ribas & Hamid went well for your son.

Did the doctor concur with Dr. Weber opinion? The worst is when the doctors cannot agree on a recommended treatment. What were their recommendations?

I live in Vegas & still looking for assitance to travel to Dr. Ribas in California.Was you son ableto get assistance with his flight to CA?/

I wish your son continued success with his Zeboraf treatment.

Marie

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Anonymous's picture
Anonymous
Replies 18
Last reply 5/21/2012 - 2:07pm
Replies by: Anonymous, LynnLuc, washoegal, natasha, deardad, Bonnets, Janner

I'm confused by my mitotic rate.  First 2 path reports did not identify any dermal mitoses.  Next 2 reports (yes, 4 opinions all on the same biopsy slides, call me thorough) did identify one dermal mitotic figure and listed the rate as <1.  So, is <1 the same as 0 or the same as 1?  Does that move me from 1a to 1b?  Does that put me into the higher risk category of thin melanomas for having <1 instead of 0?  When I went back to the path that did not identify any dermal mitoses, they said, "there are thousands of cells on a slide and it is certainly possible that a single mitosis is seen by one pathologist but not by another. Sometimes there are multiple sections and not every section is made available to the consulting pathologist."  Doesn't make me very confident then in my WLE/SLNB path report of "clear" if things can be missed.  Anyway, my question is when you read all these studies about different risk categories of thin melanomas based on mitotic rate, where does <1 fall?  Is that 1?  Is that considered 0?  The path that identified the mitotic figure also said, "We did identify a mitotic figure in the invasive component of the lesion, therefore regarded the lesion in "vertical growth phase". The issue is further complicated by the presence of adjacent nests of nevus cells; namely it is very difficult to identify each melanocyte in the dermis whether it is a benign "nevus cell" or part of the melanoma, although p16 immunostain, together with the histologic features, was somewhat helpful in this context (highlighting the nevus cells). There is early invasion into the papillary dermis mingled with a residual nevus. Additional immunostains were performed to further characterize the lesion and show that the proliferation index of the melanomatous component is slightly increased (5%) as compared to the nevus component (1%). There is marked reduction of immunoreactivity of HMB-45 expression and no significant loss of p16 expression in the dermal component of the lesion. "  I have no idea what most of this means or where it puts me w/ my mitotic rate.  How can it be <1?  Isn't  it either 0 or 1 (or a whole number greater than 1)? 

What I'm really trying to ask/get at is this:

I read a study by Gimotty and DuPont.  Before, I could say since my melanoma was thin and 1a that I could look at the ninety-something % survival rates and feel ok.  But, after reading their study, I would fall into the 31% 10-year metastasis rate, because my mitotic rate is greater than 0.  I'm male, VGP present, mitotic rate greater than 0.  So, even though tumor thickness is the most important prognostic factor and mine was thin (0.3mm), I still fall into the high-risk of thin invasive melanomas.  This is why I'm trying as much as I can to really get at this mitotic rate and what it means for me and my risk.  It seems to really put me in a different risk category once the mitotic rate is anything greater than 0, even if less than 1.  Or, would I fall into the "patients with VGP lesions that had MR of 0 for whom the rate was 4% ".  Is my mitotic rate of <1 considered to be greater than 0 or just 0??
 

This prospective cohort study included 884 patients who had thin invasive melanomas. A tree-structured analysis of 10-year metastasis was used to develop a new classification scheme. The overall 10-year metastasis rate was 6.5%. The prognostic tree defined four risk groups: high-risk: men with vertical growth phase (VGP) lesions that had mitotic rates (MRs) greater than 0, and for whom the 10-year metastasis rate was 31% (22% to 42%; n = 90); moderate-risk: women with VGP lesions that had MRs greater than 0 and for whom the rate was 13% (9% to 18%; n = 136); low-risk: patients with VGP lesions that had MR of 0 for whom the rate was 4% (2% to 7%; n = 247); and minimal-risk: patients with invasive lesions without VGP for whom the rate was 0.5% (0% to 1.2%; n = 411).

 

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