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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Linda J's picture
Replies 2
Last reply 1/18/2011 - 8:59pm
Replies by: Carmon in NM, LynnLuc

I just was about to start th braf/mek combo trial this week when the routine MRI showed 5 small brain mets-the biggest is 1cm (is that still small)? The pet scan also showed activity in my bones, spine and nodes, along with the 20 subqs that i have been getting since mid December. The plan right now is WBR this weekend, then chemo until the braf trial that targets the brain as well opens up in Canada in six weeks.
Is it a good sign that the Mel isn't in any organs other than the brain? Are bone mets bad? I feel like the Mel went totally crazy within the past few months as I had a clear pet scan in august. Am I too far gone? Can I still slow it down and beat it?? I am 31 and have a 2yr old miracle son. I told my doctors that I am going to be one of those miracle patients that they tell their other patients about.
I would really really love to hear some success stories from those of you who have had brain and bone mets. I need some reassurance that I can still beat this despite how aggressive it seems to have become.

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Insert Generic Inspirational Motto Here

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Tracey FL's picture
Replies 2
Last reply 1/18/2011 - 1:04pm
Replies by: Sharyn, KatyWI

Mom is going to MD Anderson on the 27th for a consult on the ipi.  She is stage lV brain, lung and multiple mets in torso.  She has 4 more WBR treatments then off to Md Anderson.  I would like to know how often the treatments are and how are they given?   Is this a trial with different arms that you don't know if you are getting the drug or not?  She seems so week now and is over 70.  She has done two different trials without success, both vaccine types the last one being PD-1 then chemo.   What a strong gal she is but in the last 3 days I have seen such a change in her for the worst.  Could this be from the WBR?  Thank you all for your help with my questions.

Tracey

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KatyWI's picture
Replies 6
Last reply 1/22/2011 - 2:10am
Replies by: kylez, jag, KatyWI, NicOz, MaryBZ, Janner

It looks like the cyberknife I had on my brain in November was successful on 3 spots and not so much on the fourth.  After three doses of Ipi, it's swelled up and "looks" like it's growing (though as we know know with ipi you can't really tell initially!).  The plan is to remove the offending brain met in a week.  I'd really like to hear from some of our craniotomy "experts" (John?  Nic?  How many have you guys had between the two of you - twelve or something!  j/k, but I know it's a lot.)  Can I have some advice?

What should I bring to the hospital for "comfort"?  What should I have prepared at home?  I know the doctors will "tell" me, but how long might I *really* expect to be useless/recovering?  Anything else I should know?

Thanks, I appreciate it.

KatyWI

Just keep going!

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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 :-(

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filmer's picture
Replies 15
Last reply 1/20/2011 - 10:01am
Replies by: filmer, Charlie S, LynnLuc, King, Anonymous, Vermont_Donna, NancyD

I'm a 60 year old in great physical shape...except for the melanoma. I am looking for someone in a similar situation, or someone who can give me advice on my immediate path to prevention of a recurrence.

I was diagnosed with melanoma on my right calf in Oct. 2008. It was removed  by wide excision and my sentinal lymph nodes (right groin)  biopsied. The biopsy results were negative. 

Recently, I noticed swelling in the groin lymph nodes that were biopsied. I had surgery on dec. 8, 2010 to explore, and if necessary remove affected nodes. Melanoma was found in one node and a few others were suspect and were removed. 

Now, my surgeon and a medical oncologist he recommended at Mt. Sinai in Miami Beach have recommended Interferon treatment. Unfortunately, it did not seen a very palatable course of action due to the 3-5% success rate and the debilitating side effects and damage caused by it.

To get a second opinion, I have been to the Moffitt Cancer Center in Tampa, Fl. This is where my confusion starts.

The Dr.'s at Moffitt have a different philosophy: They conferred after reviewing all my records and tests and decided my recent surgery was "incomplete". They want to go back into the same area and "clean out " all the lymph nodes in my groin AND my pelvis on Feb. 10. My problem here is that I do not feel healed from the recent surgery (I still have a drain 6 weeks later) and they tell me there is a 30% or better chance of  serious "wound problems" with this surgery. I need some help with my decision . Has anyone out there been in my shoes?

Many Thanks!

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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.

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Nebr78's picture
Replies 5
Last reply 1/22/2011 - 10:32pm

I haven't been here for awhile. I am now taking strong radiation treatments for nearly golf ball size lumps on side of face and chest near armpit..  I just have 2 more treatments left. I am eating pain pills from the lump on side of face. Real sore.  My second Dr. recommended that I not take radiation, but a cancer nurse encouraged me to go see a radiation Dr.    I am now between a rock and hard place.  I don't know whether I should  ever go back to the second Dr. or not.???  I can't take anymore chemo because of serious heart disease.

I don't know what to do if the lumps don't go away. I was sort of waiting for this Ipilimumab chemo but FDA has put approval off another 3 months.

I really don't think they are in too much of a hurry to find a cure.   Big Business

Has anyone ever had big lumps treated with radiation?    Thanks

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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

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carol b's picture
Replies 9
Last reply 1/18/2011 - 7:59pm

Tomorrow i go to see if i have any mets anywhere. I cant remember how long one last. i have had one before with the breast cancer but i just cant remember. Guess its the drugs im on now. I also get my 3rd biopsy. Its to check if im B-RAF positive. My Dr, said the surgeon might take out a lymphnode but it seem like they would want to do the petscan and then the biopsy,,i dunno...ive had my night meds and ranting. my minds going 100 miles an hour. Im scared to death about the petscan. Im not sure if i could handel having cancer any other place than i have already. My tumor under my arm is over 4 inches wide and my nodes r all matted together . I just want them to go in and yank it all out...ne way...sorry for ranting but i know all you wonderful people understand me when no one else does,,I thank God for this board and i pray for all of you to be cancer free someday SOON

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

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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.

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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

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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.)

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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

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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

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