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
Sharyn's picture
Replies 4
Last reply 1/21/2011 - 11:52pm
Hi Folks,
Well, I finally got the results of my Dec 8 CT scan, and it's not as good as I was hoping, but not all that bad either. I already knew that my leg and back tumors were shrinking, as I could see that for myself. But officially, the leg tumor is gone, and the back tumor went from over 2cm down to 1.6cm. The lung tumor has shrunk from 5.5cm to 3.3cm. All that is great, and in March I will resume the Ipilimumab treatment for another 12 weeks.
 
However, the brain is another issue. I still have the 4 tumors that I've had since last spring, but on this report, no measurements are given, only that they are "small". So what's "small"? 2mm? 2 cm? How are we supposed to guage success or failure without measurements? In any case, three of the 4 tumors have vasogenic edema (swelling) around them. So Dr. Mihalcioiu wants me to come to Montreal, and meet with him and Dr Roberge (radiation oncologist) to discuss another round of Stereotactic Radiation Surgery. That's the same procedure I had done last May, when my head was bolted to a table in a mask for 4 hours, and I wasn't allowed to move. Can't wait to do that again --NOT!!! Dr Mihalcioiu says it's possible the swelling is caused by the tumors starting to respond. My back and leg tumors did become inflamed before they receded, so it's possible the same is happening in the brain. I could also be having a delayed reaction.
 
All in all, I'm encouraged by the positive effect Ipilimumab is having on my tumors from the neck down. Hopefully we'll soon get the brain tumors under control too. I'll keep you posted.
 
Hugs
Sharyn, Stage IV , Stage IV
WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

Login or register to post replies.

We just heard that my husband TJ (st 3b) did not qualify for the DERMA clinical trial so he is going to start Interferon next week.  Any suggestions for pre-medicating or general suggestions that might decrease his side effects??

Thanks,  Kelly

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.

Hello all,

Had my third dose of Ipi. Showed my melanoma oncologist my newest melanoma tumors...pretty high up on my leg (almost near groin), which now has taken the above the knee amputation for a CURATIVE option off the table (it could remain as a palliative option down the road should my leg get horrible). If I was to consider amputation it would now be the whole leg...guess its called hip disarticulation. Pretty much NOT an option for me. I saw another surgical oncologist at DHMC who trained at MD Anderson. I have met with him twice before, the last time in 10/09 after my ILP in Boston. He had always advised going to MD Anderson and doing the infusion NOT the perfusion. But I chose to go to Mass General and do the perfusion, which we can now say didnt work. The surgeon questioned why my oncologist is having me do IPI now, a systemic treatment when the melanoma is only in my right leg, as best we can all tell, with all the scans done. He thinks I may be a good candidate for an isolated limb INFUSION, although like I said my newest tumors are pretty high up on my leg. 

So I called MD Anderson and am going to fax my records and pictures of my leg when all that paperwork is obtained and the particular doctor who does this procedure (Dr Merrick Ross) and his team will review my records and determine if they need to see me for a consult or can they rule it out as an option (or would they have any other options to recommend). This is all if we deem the IPI trial to have "failed". I have one more Ipi infusion, then wait 4 weeks and get scanned. My surgeon said better have "Plan B" lined up now and not need it than to not have a plan and need one. Yes bio chemo is an option but he said save that for systemic disease if you can do the ILI if Ipi fails.

So now I am looking for people's advice on navigating the MD Anderson center.....airfare, lodging, etc. I cannot afford these costs. I hear they have a travel agency there and I can look for reduced airfare and also they own a hotel, right on campus, with reduced lodging rates. Is this the way to go?? I live in northern VT, can get to Boston where I have friends who can put me on the plane there. I am pretty much a novice at flying and travel. I think I remember hearing about airlines with free airfare for cancer patients.

On a side note, my parents, who have been so supportive of me and my treatments, are NOT in favor of me doing this, going to MD Anderson, for a second opinion/consult about ILI. I feel that I need to go, this is my LIFE!!! (Oh my doctor also said to look in the U of Pittsburgh Cancer Institute too, anyone know about this resource and also if they do ILI's here?? Their website said they do perfusions, but say nothing about infusions).

Looking for any and all comments and advice.

Thanks, Vermont_Donna

stage 3a, currently doing IPI trial at DHMC, Lebanon, NH

Login or register to post replies.

lovingwifedeb's picture
Replies 8
Last reply 1/18/2011 - 11:03pm

I promised you an update...

Such an emotional whirlwind these last few days but for many reasons. You will be happy to know The Gambler (Bob) has pulled through his 3 hour surgery with the normal effects, stapels, swelling, pain and mixed up words. His balance, coordination, touch, recognition, etc. all in tack. The doctors is hoping as the swelling goes down the mixed up words will disappear or at least get better in time as that was his only sympton before surgery. Bob is not the best patient as he tries to get out of bed on his own without telling his nurses and gets scolded. Took him awhile to get the hang of doing things "their way". Today is day 3 and after talking with him this morning we have word that they may release him this late this afternoon. Now I just have to keep him off his beloved Harley for awhile...

Bob will have to do the gamma knife in 2 weeks to "clean up" the edges of the tumor area and cells that were left behind so his nuerosugeon told us. I watched a video last night so I would know what he would be facing... didn't look fun but better that WBRT. After that his ONC will probably meet with Bob and discuss his future plans. Since Bob was totally on a nutritionally based program because of lack of options at stage 3c 6 months ago, now at stage 4 he will qualify for other programs maybe? We just don't know yet what his final diagnosis is until after gamma knife is completed and his next doctor's appointment is done. We will let you know...

As far as family goes I think we are all on the same page now. I think there is a balance of giving and receiving hope and understanding the reality of the things that may lie in our future. Bob's oldest daughter was thinking of getting married in summer of 2012 and now she is rethinking her dates. I told her it was a wise decision. I have a daughter who thinks of Bob as her own father, they are very close. How many step fathers have a gift like that? Bob's youngest girl (25) is disabled and she is the hardest one to make understand what is happening. She will be lost most of all. But at least we, as a family are talking about the reality of what's happening with Bob, it is now in the open. This happened in 3 hours of waiting in a room under stress, talking of what it's been like for the last 6 months living with melanoma. This information can not be soft pedaled anymore. It's not in the closest anymore, hidden like a dark secret kept away from the light of day. Part was Bob's fault but part was everyone's denial of what was really happening. Yes, we take one day at a time but our future is changing now, evolving because of this damn disease. Love binds us together as family and Bob is it's key but the fear of losing him should remind us to live more fully in the now.

If you would like to reach Bob personally please use this email:

bob.rogers2010@gmail.com

 

Deb

lovingwife to Bob, stage 4

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.

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.

kbc123's picture
Replies 29
Last reply 1/25/2011 - 9:14pm

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.

kbc123's picture
Replies 25
Last reply 4/25/2011 - 12:00pm

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.

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.

himynameiskevin's picture
Replies 22
Last reply 1/19/2011 - 7:36am

...the doctor said with a smile.

Just sat and talked  to my doctor and she said, as a whole, the scans show my tumors have shrunk about 10%. Some more than others. The scans show no new tumors and my brain is still clear. So this is great. She, along with a few other have told me it's usually the second month that shows the most progress or lack there of, of the treatment. And to see this progress, in the first month, I'm assuming, and hoping might be a good thing. I've also been told that there is a chance, this could be a result of the chemotherapy part of the treatment and not necessarily from the t-cells. Next month will tell a lot more. But regardless of what's working, this stuff, that was spreading rapidly, has currently stopped, and somewhat shrunk for the time being. So I'm a happy guy either way. :) :) :)

And that's it for now. I've got to head out and catch my shuttle to the airport. Hopefully my flights are still a go and I can catch up on some sleep in a warm bed at home tonight.

Thanks for the ongoing support and well wishes.
Talk to you all soon.
-Kevin
 

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.

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.

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.

Pages