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.

Expand/ Collapse Topic
 
Replies By
View Topic
Linda J's picture
Replies 3
Last reply 1/18/2011 - 6:55am
Replies by: Fen, Vermont_Donna, Cate

Well, after routine scans for the combo trial I was supposed to start on Wednesday, it turns out I have 5 small mets in my brain which puts that plan on hold. I have had no symptoms of the brain mets. I also had a clear Brain MRI in august. I am scared at how quick it is moving.
The PET showed spots in my bones (arm, shoulder, leg, spine) as well as nodes and subqs in my hips and legs.
The goal is to do WBR this week, start a chemo to stop the aggressiveness and then get into a braf trial that is opening up in Canada in six weeks that also targets the brain.
I am devastated. But hopeful, but scared
I am 31 and I have a two year old who needs me to be in his life for at least another twenty years.
Have people lived through worse situations?????????????? Can I still live????

If you would like to get hold of me directly, please email at lindajoyt@yahoo.ca

I need some encouragement today :-(

Login or register to post replies.

Lisa - Aust's picture
Replies 4
Last reply 1/18/2011 - 12:35am

Hi Everyone,

I was hoping id never have to come back here asking for help but here goes! My name is Lisa and i am from Perth. My boyfriend Craig was dx'd in 2007 with stage 3. Had radical neck dissection, radiation and a some interferon (didnt tolerate it well). So everything was going well up until his latest scan in December just gone (which was going to be his last). His PET showed 2 spots, one on his 7th rib postero-laterally, and one in a lymph node next to his duodenum. So this was quite a shock for us all, including the oncologist (Prof Millward). The unfortunate thing was that his last scan did show a faint shadow on his rib, but after double checking with the radiologist, Prof decided it was nothing to worry about - an old sporting injury maybe. So i guess the good news in all this that it seems to be slow moving. In 11 months it has only gone to that other lymph node (which is 2cm).

So Craig has had radiation on the rib - only 5 days, pretty trouble free, and we found out a couple of weeks ago that he has the BRAF mutation which was quite a relief also. He also has another mutation that Prof has never seen before (of anyone, it is very typical of Craig to have it!!). I am interested to see if anyone else has heard of it, and its association with Melanoma? My (very) quick research hasnt found much, apart from something to do with colon cancer?? The code for it is G606R.

So luckily enough there is a new trial starting here today! Craig will be the first person starting on it in Perth. The title of it is "A Phase III Randomised, Open-label Study Comparing GSK2118436 to DTIC in Previously Untreated Subjects with BRAF Mutation Positive Advanced (Stage III) or Metastatic (Stage IV) Melanoma. GSK Protocol: BRF113683

I was wondering if anyone is on a similar trial and could give me any insight? Since Craig was diagnosed i have been keeping one eye on all the new stuff going on, so i have a bit of an idea, but its alot to take in and any info would be great.

Thanks very much, and i hope everyone out there is going ok

Lisa - Aust

Login or register to post replies.

Solodad's picture
Replies 6
Last reply 1/17/2011 - 8:03pm

Apologies if there is already a thread on this. I tried searching for it, but couldn't find anything.

That said, I'm interested in knowing if anyone is/has been on the clinical trial for Ipi as an adjuvant therapy. It is a randomized trial with a placebo arm, so you don't really know if you're getting the Ipi or a placebo.

If you're in this trial,  I'm specifically interested in whether or not you can tell if you're getting the Ipi or not. 

Thanks.

Login or register to post replies.

dian in spokane's picture
Replies 34
Last reply 1/16/2011 - 1:53pm

I had PET/CT and MRI done on Thursday and saw my oncologist today for followup. I heard him say something I have never heard today. While he was recording his notes he said I was in 'complete remission'. And he told me I was a 'walking miracle', and, in a gesture completely unlike him, he HUGGED me when I left!

After all my years here, I wouldn't call myself a walking miracle, because I know who THOSE folks are. DiVa.. John...Charlie.. daKING! Nicfrom Oz. I've not had to go through anything compared to what I see people endure here every day. But I am still beyond delighted to hear such things come from his lips instead of something like..'we've got this mass in your belly to look at' or some such thing!

We've agreed to drop my scans to every 4 months, though if I get more clear scans then, I am going to push for every 6 months. PET's are almost unendurable now for me without doing pain meds for my back first. This time, for the first time ever, I spent the trip home from the center vomiting in the litter bag while bob drove, asking me if he should pull over!

I continue to celebrate my successes against melanoma by overeating and over partying! Tomorrow, I'll brave the snowstorm and head off with a couple of fiddlers to the Portland Old Time Gathering. Then next tuesday I will be heading off with four of my best musical girlfriends for an estrogen filled week of playing music and drinking mai tais in Hawaii.

Right now I am gonna go see True Grit!

Good luck to ALL of you who are going through tough treatments this week

dian 

Login or register to post replies.

I visited this board in 2008 when I discovered a mass in the inguinal area of my left thigh.  I had what had been Dx as a plantars wart by my GP and dermatologist on the bottom of my left foot.  It had not gone away despite repeated treatment and I asked if it could be related to the swollen area, which my GP said were likely swollen lymph nodes from an infection.  He said no connection to what he assured me was a wart.  Two months later, after antibiotics and visit to a general surgeon, I googled "swollen inguinal lymph nodes and plantars wart" and got several hits for melanoma, one of which led me here and I read that I may have a misdiagnosed melanoma that had spread.  My GP refused to send me to a new dermatologist, so I self referred and a punch biopsy revealed melanoma.  My surgical info is in my profile (for future reference do I need to include it in posts?)  I had surgery for WME and had all left inguinal lymph nodes removed.  Recovery was long, painful and took everything I had.  Once I began to feel good again, I had no desire to research melanoma and moved forward with life with an attitude that I had beat this!  Since I cannot change the past, I am where I am and I will move forward from here.

As noted in my profile, I have non-calcified lung nodules, 8mm in left upper lobe, 2cm in right lower lobe.  They grew slowly over months until the right lung went from 1.2 to 2.0 in 3 months.  I have been seeing a general oncologist who has allowed me to have my "wait and watch" approach, even though the melanoma oncologist she confers with has repeatedly recommended a year of interferon.  Not even sure that is an option now?  My current oncologist said she would do a biopsy of the right nodule and if it was melanoma, would do localized radiation on both nodules to remove them.  The melanoma specialist said no - this was not advisable and requested I come up the next week (which will be 1/20/11).  He requested that I have a brain MRI before I come up (he is 4 hours from us, as well) and bring CDs and reports from my recent scans.  He will present my case to a "tumor board" for recommendation.

I came back to this board last week and started doing research but feel I am in over my head without enough time to find out everything I need to know before I head up to see this doctor.  I want to go in to the appointment informed and with the right questions.  I realize now that not doing adjunctive treatment early on may have made a difference in my case but have to start from where I am.  So, for those with experience with meeting with melanoma oncologists and the concept of the tumor board, what do I need to know?  What do I need to ask?  Where would you point me for "must have" facts and information for this appointment?  I appreciate any direction that any of you can offer because right now, I am sort of shotgunning it and there has to be a more effective way!

Also, I have had what is referred to as a "kidney cyst" on my PET/CT scans for at least 18 months.  It was NOT on my pre-op scan, so showed up some months post-op.  It has grown over time and I believe is 3 cm x 6 cm now.  Also, I have thickening of the wall of my left adrenal gland which has increased slightly over months and also was NOT present on my pre-op scan.  Does this mean anything in terms of melanoma?

Thanks again to any who can offer me some direction.  I will continue my research but know that some here have a lot of experience.  I hope I will be able to be on this board a LONG time and help someone else in the future.

Blessings,

Shari

Game on. I am going to win! (The thought I had when I heard the doctor say I had melanoma.)

Login or register to post replies.

I’ve been stage IV now for a year, but so far with only small, randomly located sub-q mets (seven total). Anyone out there with a history similar to mine? So long as the tumor burden remains low my onco and I agree that surgery is the best therapy. Disease progression to internal organs is obviously a concern, but so far there’s no sign of that. Anyone else on this slow track? Did you go through IL-2 anyway? PeterO. 

www.theogler.blogspot.com

Login or register to post replies.

Shaggy 's picture
Replies 2
Last reply 1/15/2011 - 7:17pm
Replies by: JakeinNY, Fen

This has changed a lot since my last visit.Just checking in to say hello to all my old friends if any are stil here

Login or register to post replies.

carol b's picture
Replies 5
Last reply 1/15/2011 - 4:56pm

Well i got to see Doc at Vanderbilt today.. i go next Monday for a pet scan to see if  mel has spread anywhere else in my body. then the following Monday i go for my 3rd biopsy to  see if i am BRAF positive. Then the Monday after that i go to get results. If i am Braf positive i will start my treatment 3 weeks after that.. if I'm not BRAF positive its back to the Interluekin2 in Memphis..quality or quantity of my life is my thoughts of that treatment. i haven't decided to do that yet.. my cancer is growing fast and the pain is getting worse by the day. I'm gonna fight as long as i can but sometimes quality is more comforting to me..I dont know ..sorry i sound whinny tonite.. its starting to take its toll om my body..more pain pills this week than last week..next is oxy something. i want to remember my last year off life..............

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

Login or register to post replies.

kbc123's picture
Replies 6
Last reply 1/14/2011 - 9:34pm
Replies by: kthekhal, kbc123, W., Sherron

Hello ~  This is totally new to me and I am looking for answers, support, sanity, sleep, not all in that order.

I am currently in the very beginning stages of my new life-  with Melanoma.  I had a strange mole on my back that was removed last week, got the "unfortunately its Melanoma"  telephone call on Friday.  By Monday, I was seen by a doctor in our local Cancer Institute (CINJ)  who really gave me a better outlook on things, but nonetheless, I am petrified.  I am going for a lymphoscintigraphy and for more surgery to take off more skin/tumor area and I will have a lovely scar on my back ( who really cares about that anyway).   I will take all the scars they can give me, but I want my life back.

Someone on here, please tell me I am going to get through this, because as of last night, my brain can't deal with this. Sleep is minimal, I can't turn it off. 

I will owe you the world if someone could just give me peace of mild. 

Login or register to post replies.

Shelly in Switzerland's picture
Replies 6
Last reply 1/14/2011 - 5:11pm

I just had my 11th cycle CT scan for the B-raf trial and I am still responding!  The 8th cycle CT scan showed stable disease so I was sure that this time it was going to show progression but instead it showed slight shrinking still!  Yahoo and Amen!   I am so ready to be done thinking about this for awhile.  My side effects have very minimal so I am feeling very healthy.  I DO have curly and thinning  hair now... anyone else have this side effect?  Something I can live with.  FYI I also have iritis almost monthly that I have to use steroid eye drops for but I can deal with that as well as the arthritis flare-ups.  All in all I feel great and ready to march forward.  I am even thinking of joining a gym here in Basel as well as start substitute teaching! 

I thank God for this continued response and continue to pray for everyone on this board.

Peace and joy,

Shelly

Login or register to post replies.

bcl's picture
Replies 5
Last reply 1/14/2011 - 3:00pm

http://www.timescolonist.com/health/votes+teens+under+from+using+tanning+beds/4099594/story.html

 

 

 

A recent University of Minnesota study said people who use any type of tanning bed for any amount of time are 74 per cent more likely to develop melanoma.Photograph by: Glenn Olsen, Postmedia News

People younger than 18 will be prohibited from using indoor tanning beds after Capital Regional District politicians voted 18-1 in favour of a ban Wednesday.

Chief Medical Health Officer Dr. Richard Stanwick recommended the ban, which was debated by more than 40 speakers — almost evenly divided on the issue — during a

4 1⁄2-hour hearing.

Most of the politicians based their support on the testimony of youth in favour of the ban and the preponderance of peer-reviewed scientific evidence linking indoor tanning and skin cancer.

Juan de Fuca electoral area director Mike Hicks said he expects similar laws soon will be common across Canada.

Nova Scotia recently passed legislation that will ban the use of tanning beds for anyone 18 or younger.

It will be a huge pity, Hicks said, if the ban doesn't sweep "like wildfire across Vancouver Island, B.C. and Canada."

The lone dissenter was Metchosin Mayor John Ranns, who said the age limit for the ban should be 16 rather than 18.

The tanning industry mounted a powerful lobby against the proposal — even though it says youth account for just one per cent of its business — and blamed skewed science for the ban's approval.

Under the bylaw, tanning facility operators will be required to ask for ID from anyone who appears to be younger than 25. Contraventions will carry penalties from $250 to $2,000.

Stanwick, who originally recommended the indoor tanning bylaw in 2005, was elated Wednesday. "I'm so impressed," Stanwick said. "I was hoping that what happened in 1996 would happen again today — and it did."

That's the year young speakers persuaded the CRD, which had just voted to impose a sweeping smoking ban in all indoor public places effective Jan. 1, 1999 — then the strictest regulation in the country — to take extraordinary measures to protect youth by enforcing a smoking ban on school property as of September 1996.

Once again, "it wasn't my presentation, it wasn't the duelling scientists. It was that our directors saw the real promise for this region — that is our youth," Stanwick said. "They spoke eloquently, they spoke to a generational change and we were the supporting cast. It was the youth that drove this process."

Oak Bay Secondary School student Martene Hartnell delivered 300 signatures in support of the ban and an accompanying video. Earlier, the tanning bed industry submitted 800 names against the ban.

Adele Green of the University of Victoria's Youth Against Cancer said the ban decision is "a big weight off our shoulders. I'm very happy today."

Saanich Coun. Judy Brownoff said if the ban prevents even one person from dying of melanoma, it's a success. Studies by a variety of health agencies, including the Canadian Medical Association, have shown a direct link between artificial tanning at an early age and skin cancer.

In September, the New England Journal of Medicine wrote: "We believe that regulation of this industry may offer one of the most profound cancer-prevention opportunities of our time."

 

 

Login or register to post replies.

ed_CT's picture
Replies 16
Last reply 1/14/2011 - 2:15pm

More good news to share with "the community".   Just had my latest CAT scans and I'm still NED now just over 5 years since going Stage IV, 6 years since initial diagnosis at Stage III.    A brief history-  Diagnosed with Melanoma on left ear  Sept 2004.  One sentinal node microscopic involvement.   Went on a Cancer Vax trial in Jan 2005.   Scans 6 months later showed it had spread to liver and neck.  Had tumor removed from Neck - left Mel in liver so I could do a trial.   Started trial of Nexavar and Temodar.   Also went on an almost Vegan diet (ate some fish) and started taking Tumeric supplements.   Within 4 months liver Met had shrunk to "scar tissue".  Stayed on drugs at full strength for 1 year.   After 1 year they reduced the Nexavar dose by 1/2 and kept Temodar the same.  Stayed on this regimen for another year and then dropped the Temodar (this ended my involvement in trial).   Stayed on the Nexavar alone (still 1/2 dose with lots of breaks - more as time wore on) until I finally ended it in Dec 2009.   I still take Tumeric but not as regularly as I probably should and I have started eating some meat, eggs - dairy in the last couple years  although I still eat lots of vegitables and drink soy milk and avoid meat most of the time thanks to a very good wife (I guess she still wants to keep me around).  Unfortunately from what I understand out of 146 people in my trial of Nexavar / Temodar,  I was the only one with a "complete response".  I'm sorry it didn't work out for more people. I'm a little disappointed that my Onc at Yale still thinks I should get scanned in six months but I guess caution is a good thing.   Maybe I can convince the people at U of Penn I see to let me go 9 months.  

Hope this post gives people here some  bit of inspiration.   There a quite a few of us "Stage IV" survivors lurking on this board.  

 

Best wishes

Ed from Connecticut ("Ed_CT" - formerly just "Ed" until they forced me to change it.)

Login or register to post replies.

Debbie Dietz's picture
Replies 15
Last reply 1/14/2011 - 9:02am
Replies by: Debbie Dietz, djpayn, NancyGM, Charlie S, LynnLuc, Kim K, lhaley, Anonymous

I am stage IV and up for review with SSDI. I have been on SSDI since 9/07. After multiple surgeries and 4 clinical trials (GP100 vaccine, IL-2 and gene therapy trial all at NIH and then Ipi, here in Chicago) I am in remission and have been since 8/08. While the Ipi caused life-threatening complications for me I am now left only with Type 1 diabetes and thyroid disease as a result of the drug.. Also, because it is a non-FDA approved drug, no one can tell me how long the remission will last.

Does anyone have any tips on how to present my case to SS? I have used the search engine here and read the posts regarding SSDI. I have called the number provided here (1-866-673-6460) and spoken with a cancer social worker. Her only advice was to contact www.cancerlegalresourcecenter.org, which I have done and am awaiting a response. If anyone here has any suggestions on wording, etc. for the paperwork involved, I would greatly appreciate it.

Thanks

Debbie

Login or register to post replies.

ockelly's picture
Replies 6
Last reply 1/13/2011 - 2:24pm

My husband TJ was dx with Stage 3b MM (amelanotic with unknown primary) in Nov.  We are waiting to hear

if he qualifies for the GSK DERMA clinical trail.  The process is taking much longer than expected.  We plan to 

start Interferon if he does not qualify.  Wondering what the optimal time frame is to start?  I thought I had heard

approx 70 days post dx (or maybe post op??).  He had the node removed on 11/4 and parotidectomy and SLND on 12/2.

Thanks 

Kelly

Login or register to post replies.

himynameiskevin's picture
Replies 8
Last reply 1/12/2011 - 9:51pm

The snowstorms actually have my flights canceled and I'm stuck in the Dallas Airport overnight. It's cold, uncomfortable, a little lonely... but a perfect time to check up and say hello to all of you.

It's been a couple weeks, did my best to enjoy the holidays, focus on the positive and live a life not revolving around this situation. And I've been doing well. I think I recovered great from the "ACT". The papers they gave me said I might be pretty fatigued for a month or so, but after three days home, and finally keeping food down and eating a lot of it... I've felt pretty good. Actually the best I've felt since August probably.  I'm back at work and am doing all the normal things I did before all of this. My weight is back to normal and now if my hair would just grow back, I'd be golden. :)

Anyway, they've got me coming back to the NIH once a month for six months for scans to see what's going on inside of me. Hopefully I can get a couple hours of sleep here on the floor before my plane leaves tomorrow at 7am, and if that flight's not canceled I should make it to DC just in time to catch the shuttle which will get me the the NIH just in time to check in and make my way over to the MRI and CTscan area just in time to fill up on the fruity contrast drinks. mmmmm. It's going to be close. Then Thursday morning I have to do aphresis before the doctors meet with me. Then we talk, and that will be the first of hopefully a few big positive definitive moments. I'm not necessarily overly worried or exited about with they will say, but I am concerned and interested if that makes sense. I know I'm in good hands there and know they're doing what they can to help. Which does a lot to ease the mind. So we'll see how this goes. I'll let you all know. 

Here's to a cold night in a strange airport. Where's the light switch?

Goodnight all. :)

-Kevin
 

Login or register to post replies.

Pages