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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MaryD's picture
Replies 18
Last reply 3/16/2011 - 8:21pm

I feel very fortunate to say that my latest CT scan was still clear - 2 1/2 years after the last reucrrence.   In January, it was my 10 year anniversary since the start of my journey with melanoma.   Since that time I've had 5 recurrences including the lung met in 2007 when I joined the Stage IV club.

Treatments have included 1 year of interferon, vaccine trial, radiation on the arm, Ipi, and in 2009, a 6 month course of pulsed IL-2. 

I have been very blessed to not only live with this disease with a decent quality of life, but also to have met amazing patients and health care professionals  who have touched my life.

I volunteer at a local Children's Hospital and for the past year I have have been visiting a little 2 year old girl with neuroblastoma.   She has been hospitalized for 2 years, been through everything imaginable , and yet perseveres every day.   She is a daily reminder of how precious life is and what it means to fight for it.

Know that there is hope!

Best wishes to all ..

Mary

 

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Replies by: adgesoph, NicOz

If anyone here is interested in reading it, there is a GSK melanoma trial for brain mets at clinicaltrials.gov/

 

http://clinicaltrials.gov/ct2/show/NCT01266967?term=melanoma+gsk+brain&rank=1

 

A Study of GSK2118436 in BRAF Mutatant Metastatic Melanoma to the Brain

 

Michael
This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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I have not heard anything back from my CT abdomen and pelvis nor my chest xray from Tues 3/8 yet.  I called Thurs afternoon and left a message and still did not receive a call back.  I am putting the "no news is good news" mantra to the test this weekend!  Clear scans would put me "officially" 6 mths NED from a radical groin dissection in september. 

So, doing a partial happy dance and hoping to shake my booty full force by next week!

Laurie

Do not fear tomorrow, God is already there.

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Ellen's Brother's picture
Replies 7
Last reply 3/13/2011 - 11:40pm

Hi, My sister has melanoma stage IV. It would be great if there were any support groups, people in the same boat that she (and me) could meet. We live in New Hyde Park, NY.  I'm also perplexed by our health system. My sister is on disability using Medicare. Getting appoints, treatments... everything is in slow motion, meanwhile her health declines by the day. I'm frustrated, disgusted, and worried. Any advice would be welcome. Right now my sister is being treated through Winthrop Hospital. The tumors on her lungs were discovered December. It's now March. It's like all her doctors have forgotten her.

 

Thanks all,

Tom Mennin

tomillustration@yahoo.com

Always hoping for the best, Tom M

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adgesoph's picture
Replies 13
Last reply 3/14/2011 - 4:34pm
Replies by: LynnLuc, Linda J, Anonymous, adgesoph, NicOz, KatyWI, Carmon in NM

 

Hi, I've posted here just a couple of times for my dad.  He has stage IV mel. - lung mets, and a couple tumors in his head and neck area.  This past week he has been at Vanderbilt getting ready to start the GSK Braf/Mek combo trial and passed all the screenings until they did a cat scan of his brain and found 2 small brain mets.  So now he's not eligible for this trial-talk about a major let down-we were all so excited he was going to start this medicine.  But Vandy does have the GSK Braf trial for brain mets and they are now trying to get him into this.  Is this the way to go or should he do gamma knife??  The brain mets have thrown a huge curve ball in everything because I thought I was up on my melanoma research but haven't looked into what's best for brain mets.  

My parents are still at Vandy waiting to here if my dad can get into this new trial (they live 12 hours away).  He's had radiation before for tumors in his head/neck area and it didn't work and he lost all of his hair in that area and still has big issues with dry mouth and not tasting things well.  So radiation isn't something my parents want to do again because it was a bunch of pain and trouble for nothing.  Is Gamma knife the same??  Any thoughts on this braf trial for brain mets?  I know it's new and has had some success but with only a small number of patients.  Also, anyone else have experience at Vandy?  So far my parents love it (doctors, staff just impressed in general), just wish they could start a trial.  

Thanks for any input you can give me.  I feel we really need to so something fast with this small brain mets!

 

Adrienne

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Hi, I've posted here just a couple of times for my dad.  He has stage IV mel. - lung mets, and a couple tumors in his head and neck area.  This past week he has been at Vanderbilt getting ready to start the GSK Braf/Mek combo trial and passed all the screenings until they did a cat scan of his brain and found 2 small brain mets.  So now he's not eligible for this trial-talk about a major let down-we were all so excited he was going to start this medicine.  But Vandy does have the GSK Braf trial for brain mets and they are now trying to get him into this.  Is this the way to go or should he do gamma knife??  The brain mets have thrown a huge curve ball in everything because I thought I was up on my melanoma research but haven't looked into what's best for brain mets.  

My parents are still at Vandy waiting to here if my dad can get into this new trial (they live 12 hours away).  He's had radiation before for tumors in his head/neck area and it didn't work and he lost all of his hair in that area and still has big issues with dry mouth and not tasting things well.  So radiation isn't something my parents want to do again because it was a bunch of pain and trouble for nothing.  Is Gamma knife the same??  Any thoughts on this braf trial for brain mets?  I know it's new and has had some success but with only a small number of patients.  Also, anyone else have experience at Vandy?  So far my parents love it (doctors, staff just impressed in general), just wish they could start a trial.  

Thanks for any input you can give me.  I feel we really need to so something fast with this small brain mets!

 

Adrienne

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Hi, I've posted here just a couple of times for my dad.  He has stage IV mel. - lung mets, and a couple tumors in his head and neck area.  This past week he has been at Vanderbilt getting ready to start the GSK Braf/Mek combo trial and passed all the screenings until they did a cat scan of his brain and found 2 small brain mets.  So now he's not eligible for this trial-talk about a major let down-we were all so excited he was going to start this medicine.  But Vandy does have the GSK Braf trial for brain mets and they are now trying to get him into this.  Is this the way to go or should he do gamma knife??  The brain mets have thrown a huge curve ball in everything because I thought I was up on my melanoma research but haven't looked into what's best for brain mets.  

My parents are still at Vandy waiting to here if my dad can get into this new trial (they live 12 hours away).  He's had radiation before for tumors in his head/neck area and it didn't work and he lost all of his hair in that area and still has big issues with dry mouth and not tasting things well.  So radiation isn't something my parents want to do again because it was a bunch of pain and trouble for nothing.  Is Gamma knife the same??  Any thoughts on this braf trial for brain mets?  I know it's new and has had some success but with only a small number of patients.  Also, anyone else have experience at Vandy?  So far my parents love it (doctors, staff just impressed in general), just wish they could start a trial.  

Thanks for any input you can give me.  I feel we really need to so something fast with this small brain mets!

 

Adrienne

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Replies by: Janner

I had my initial wide excision 8 years ago in April. Then another one at MD Anderson Cancer Center a few months later. Every once in a while, it begins itching at that site, but rarely but this past several days it has been driving me nuts and in asking hubby what is going on back there (I can't see well in the mirror), he said there is a ridge of swelling and it is red (since I ask him every few minutes to scratch it, that may be the reason for the redness). However, the itching, day and night, is driving me crazy.

This is how I first found my initial melanoma lesion....it was either a mole I was unaware of or a mole that popped up at that site suddenly but it itched like mad. I spent a lot of time brushing against doorways to scratch for a while, until I finally went to the doctor for what turned out to be a cracked rib (from simply bending over to pick up purse) and had him look at my itching mole.The mole was removed  immediately and I got the word the next day that it was melanoma. It turned out to be deeper than thought and had spread to 5 nodes (three filled with melanoma and two with micromets). Thank God it was caught in time and I have the cracked rib to thank for that!  The rest is history. I went to MD Anderson Cancer Center where the metastasis was caught in time and I have been doing very well.

Okay, getting wordy here. My question is this:  Could this be MORE melanoma presenting at the scar site after all these years? Why would an old scar begin swelling and itching so badly? Anyone else have this happen?

Of interest is that I just had my scans and all a couple of weeks ago. Another year of being NED. I do have an appointment with a dermatologist at MDA in May to look at a site of interest on face (looks like age spot and likely is) and do an overall exam, and was told that this was the first available appointment. Should I call the Mel and Skin Center at MDA if this itching and swelling continues and see if I can get in on an emergency basis? Taking an antihistimine does not help with the itch and I hesitate to put anything on it. It is NOT a bug bite.

Any thoughts or advice will be greatly appreciated. By the way, I think I like the changes here on this site, but it took me by surprise. I opened a new account under GiniaJM but am formerly Jeannie in Texas, as my longtime friends here know me as. Hello all!

The heart often accepts what the head refuses to.

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Hi, I've posted here just a couple of times for my dad.  He has stage IV mel. - lung mets, and a couple tumors in his head and neck area.  This past week he has been at Vanderbilt getting ready to start the GSK Braf/Mek combo trial and passed all the screenings until they did a cat scan of his brain and found 2 small brain mets.  So now he's not eligible for this trial-talk about a major let down-we were all so excited he was going to start this medicine.  But Vandy does have the GSK Braf trial for brain mets and they are now trying to get him into this.  Is this the way to go or should he do gamma knife??  The brain mets have thrown a huge curve ball in everything because I thought I was up on my melanoma research but haven't looked into what's best for brain mets.  

My parents are still at Vandy waiting to here if my dad can get into this new trial (they live 12 hours away).  He's had radiation before for tumors in his head/neck area and it didn't work and he lost all of his hair in that area and still has big issues with dry mouth and not tasting things well.  So radiation isn't something my parents want to do again because it was a bunch of pain and trouble for nothing.  Is Gamma knife the same??  Any thoughts on this braf trial for brain mets?  I know it's new and has had some success but with only a small number of patients.  Also, anyone else have experience at Vandy?  So far my parents love it (doctors, staff just impressed in general), just wish they could start a trial.  

Thanks for any input you can give me.  I feel we really need to so something fast with this small brain mets!

 

Adrienne

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Terra's picture
Replies 7
Last reply 3/12/2011 - 3:04pm

we just received news that derek has mets in his liver, largest 1.3 cm, in his lung and one on his 6th rib that is 4.5 cm - we will discuss treatments in one week a Princess Margaret in TO - with this news and no trt or worse yet no trt that works how fast might this happen - please give me hard facts - he is trying to balance quality of life with treatment - I know he won't continue with trt after trt if 1 or 2 doesn't work and need to know e.g. for leave at work etc. - not making sense I know pls answer as you might be able to

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Newmom's picture
Replies 10
Last reply 3/12/2011 - 11:07am
Replies by: Newmom, alicia, lhaley, KellieSue, Anonymous

I had my 6-month ultrasound today - conclusions appear normal except the following: "Complex right ovarian follicle or cyst with an increased volume of free fluid in the pelvis.  The cyst may or may not be related to the cyst identified on prior study.  Advise a 2 month follow up examination for resolution".

Anyone know what the above means?  I am particular concerned on the "increased volume of free fluid in the pelvis" and the following for resoluation.  What do they mean?  Something bad was observed during the ultrasound?  I have made an appointment to speak with my doctor on this but just want to run this by everyone here first to get some sight.  Thanks.

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chrisS's picture
Replies 9
Last reply 3/14/2011 - 6:23am
Replies by: akls, Jan in OC, Anonymous, Carmon in NM, chrisS, Vermont_Donna

I wrote 2 weeks ago before our Maui vaca that my wife found out about brain mets. Was concerned about flying. The vacation was awesome! Came back and had her stereoscopic surgery on Wed. She was fine that night, and went to work the next day. Yesterday received a call from her work that she was having multiple seizures! She was taken to the ER and I'm in the ICU 15 hours later. There was no bleeding, thank GOD! She is under now and I'm waiting for neurology for the next step.
Has this happened to anyone else? I'm so mad at the stereoscopic surgery doctors made it seem so chill and never warned me that this was a possibility. Maybe I'm stupid for not thinking about it but I can't think of everything! What if she was home alone or driving??
I assume she will lose her license for safety. Anyone know of services in san Diego for this?

Concerned husband

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Jlynn2303's picture
Replies 6
Last reply 3/21/2011 - 11:04pm

Hi,
I wrote in an earlier post about my 63-yo step mother who was dx with melanoma in the lung last October. It had been found three years previously, but untreated. I've been able to find that if it has metastasized to other organs it is stage 4, general prognosis (5 years, difficult to treat) and various other info on typical sites for mets, etc. What I can't find is what actually might happen to her life.

She's never been the healthiest, was/is overweight, doesn't exercise or do much, etc. Pretty much a couch potato with no desire to do anything different now that she has cancer, so nothing has changed (she had a lung lobe removed last fall and they found no other signs). And even with all this talk of stage 4, etc she just doesn't seem any different now than she did 3 years ago when it was first discovered (though they didn't tell her until last October so it was undiscovered, untreated and allowed to grow for 3 years) or even three years before that. We are doing the watch and wait thing - but no one seems to know what we are waiting FOR. For it to recur, but what does that look like, what does it mean?

I just don't understand how, if it is stage 4, how she could not seem sick? Or feel worse? I hate to be morbid, but I'd like to know what to look for, how to be prepared. If the prognosis is typically 5 years, what does that mean? At this point, there is no treatment happening. Every couple of months they go see a doc. She will go to have ovarian cysts removed on March 21st, but they say they are benign, the PET scan showed nothing although the CA125 was over 1000. And life has just sort of settled back to the way it was before. Everything I've read says this is serious, but only talks in very general terms about prognosis and treatment.

Not that it is certain that this will kill her but statistically, the probability seems high(she seems rather resigned, as her gma, father and brother all died from cancer), but I don't even know what to watch or plan for.

What actually causes death? No one wants to talk about this, and I know, because of history and family dynamics that dealing with this will fall largely to me, so I'd like to have some idea of what actually, day to day, happens. I don't have any say in the treatment itself, don't go to doctor visits, etc. but can pass along useful questions to ask to my dad.

Thanks,
Jennifer

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alicia's picture
Replies 16
Last reply 3/29/2011 - 9:57am

Hello Friends,

I just had surgery jan 7, 2011 for wide excision of 2.3mm or greater amelanotic melanoma and SNB both groins.  The scar has been healing nicely until just a couple weeks ago (I am 9 wks post op btw) It started itching really bad and has a raised scaley pinkish area over the scar.  I'm really hoping this isn't a reoccurence in the scar but it feels exactly like the primary amelanotic melanoma that was there previously. This recent melanoma was also my third primary melanoma btw the onco says I have to think of myself as a stage 3 melanoma patient with 3 primary tumors 2 of which were intermediate thickness.  In my mind I keep trying to tell myself its probably nothing but a skin irritation but I'm really scared it could possibly melanoma since I've seen this beast come up three times now (twice in the past year). Plus the other 2 wide excision scars I've had have never had this kind of "irritation".  My question is has anyone else out there had an amelanotic melanoma reoccur in your wide excision scar and what did it look like/feel like???  or has anyone else experienced an irritation like this over your wide excision scar??? I also just had CT and PET scans yesterday for restaging and will be following up with my oncologist monday for results.  I plan on showing her this area on my wide excision scar at that time.  Thank you all for your help as I don't know what I would do without you:)

 

Thanks so much:)

Alicia Stage 3a w/ 3 primaries

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Jlynn2303's picture
Replies 1
Last reply 3/11/2011 - 8:05am
Replies by: lhaley

Hi,
Last October, my 63-year-old step-mother was taken to the ER for a GI problem resulting from old bariatric surgery. They did a CT scan of her abdomen and picked up spots on her lower lungs. The radiologist compared the CT scan to one taken three years previously when she had gone to the same ER for the same GI stuff and found that the masses had grown. It turned out that her doctor had forgotten to inform her. She had surgery to biopsy and remove the larger lump, (they removed a lung lobe) last November ('10) and it came back as melanoma, stage IV. A Pet scan in December came back clear. Apparently, she also has cysts on her ovaries and her CA-125 came back extremely high (over 1000). She is scheduled to have another PET in April, although the insurance company still is not certain it wants to pay for the first one. They have denied Interleukin treatment. Her father, brother and grandmother all died of various cancers. They did a skin inspection and found nothing. She seems to be feeling the same as always, no worse, no healthier.

I am having trouble getting a straight answer out of people and have some questions.

1. They actually discovered stage IV melanoma in her lungs over three years ago. When they talk about prognosis, how do they figure the time?
2. How accurate are PET scans? Everyone seems to think they are infallible, but I've seen stats of 81% accuracy. What does a clear pet scan + a positive CA-125 mean?
3. How does having had melanoma impact all of the other, unrelated surgeries and stuff that she will have to have to tx her many other ailments?

Thanks,
Jennifer

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