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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Hi Everyone:

I was just wondering if anyone has had experience with radiation and Zelboraf.  Is it possible to have radiation on an external met when taking Zelboraf or is it common practice to stop Zelboraf until the radiation is complete? If the two are not compatible together, Why is this?

 

Thank you!

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Anonymous's picture
Replies 1
Last reply 7/12/2012 - 1:33am
Replies by: H555

Hi Everyone:

I was just wondering if anyone had experience with radiation and Zelboraf.  Is it possible to have radiation on an external met when taking Zelboraf or is it common practice to stop Zelboraf until the radiation is complete? If the two are not compatible together, Why is this?

 

Thank you!

 

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Linny's picture
Replies 2
Last reply 7/9/2012 - 10:47pm
Replies by: Linny, deardad

Hi Nahmi,

I hope that things are still going well for your dad. I just came across a web page called the Australia / New Zealand Melanoma Trials Group and I thought you might find it useful. If you've already seen it, just ignore it.

http://www.anzmtg.org/content.aspx?page=currtrials

Stage III, Unknown Primary; 1 positive node in left axilla

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mrssam1979's picture
Replies 6
Last reply 7/9/2012 - 5:37pm
Replies by: DeborahG, Anonymous, Janner, mrssam1979

Three years ago I was diagnosed with Stage 2 Malignant Melanoma at 29 years old.  I have a family history, I am fair, and I have had many childhood burns.  

 

Fortunately, I did not have to have chemo/radiation treatment but I do get skin checks twice a year. My doctor does a chest scan and lab work every year.  Do other patients with the same history as I have also have to get these done anually?  What are they looking for with these tests?  And finally, is it necessary to do it for every year? 

I am having two biospies this Wednesday. This will be my 10th and 11th shave biopsy since my original diagnosis.  All but one have come back significant abnormal but not MM.  One of the moles being removed is right below my nipple--very undesirable place to have a shave biopsy! :(

Sometimes I feel in dark about melanoma because I was an army wife and moved frequently, changing dermatologists often and being told various things.

 

Any help would be appreciated. Thank you.

 

Sarah

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Candi13's picture
Replies 11
Last reply 7/18/2012 - 5:39pm

Hi Everyone,

Here is an update on taking the  Merck Pd1 drug since December 2011.

Starting this trial at Stage 4, with tumors on leg, chest & lungs, my "first" set of scans showed NED. My doctor could not find cancer anywhere in my body. Such a miracle for only taking this drug for 12 weeks.

Just got the results of the "second" set of scans, and I continue to be NED.

As I side note, my side effects are occasional joint pain. Also, my thyroid lost some of its function so I now takes meds to supplement my thyroid. The study nurse told me that 8 other patients are also having thyroid issues. Apparently, my side effects  were also reported as side effects by BMS PD1 drug trial results at ASCO .

The study nurse also told me that many patients are showing a response. She commented that the response rate for thisMerck PD1 drug is very impressive.

I hope that this information on my experience with Merck PD1 gives you hope!

Wishing everyone a NED status.

Candi

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awg's picture
Replies 5
Last reply 7/12/2012 - 4:45pm

Hello,

 

I completed a year of interferon about 2 weeks ago. I am already feeling much better but find myself very short tempered and impatient. I also have some joint pain that can be painful.

I go to work daily but I now want to sped more time at home and I am just not interested in crowds or gathering with friends or family. I am very thankful for my current NED status and want to move on with a full and normal life.

I have given it some thought and I feel that I went for cancer free to cancer treatment and now I am in a middle ground and may need to figure out how to handle this new area.

Just not 100% normal.

Have other experienced this? Any suggestions?

 

Thanks,

Allen

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rjcravens's picture
Replies 3
Last reply 7/9/2012 - 1:48pm
Replies by: Linny, Richard_K, washoegal

Question to those taking vitaamins and suppllements. I am stage 2B, this is what i am currrently taking:
fish oil
synthroid...due to interferon damage
tumeric 1000mg
biotin 1000mg....trying to get my hair and nails to grow back
b50
calcium with vitD
vit D3
and a multivitamin.
should i be taking all this at once? Also, for those of you that found mass in lungs, what were your symptoms? I have had this annoying cough every take a deep breath that makess my whole lower lung area hurt, now its spread to back aand hurts really bad alongside my spine. I just had pet scan in first week june was negative. It just has me worried.

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Question to those taking vitaamins and suppllements. I am stage 2B, this is what i am currrently taking:
fish oil
synthroid...due to interferon damage
tumeric 1000mg
biotin 1000mg....trying to get my hair and nails to grow back
b50
calcium with vitD
vit D3
and a multivitamin.
should i be taking all this at once? Also, for those of you that found mass in lungs, what were your symptoms? I have had this annoying cough every take a deep breath that makess my whole lower lung area hurt, now its spread to back aand hurts really bad alongside my spine. I just had pet scan in first week june was negative. It just has me worried.

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deesbabygirl's picture
Replies 12
Last reply 7/15/2012 - 9:30am

My daughter is 41 just had bisopy done dr called said stage 3 melanoma waiting to see derm and onocologist as a mother I am lost and heart broken but without much knowledge of Melanoma I don't know what to expect or what to research I need advise form someone as to how to deal with this emotional roller coaster!  at first she did not want to tell me then she did we cried but now a few days later I feel she is shutting me out of her life because she is so independent and dosen't want me to worry is this normal? I have told her I will go to the appointments with her but want to go armed with questions what do I need to ask?  thanks to anyone who can enlighten me on this.

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I'm from China and my sister was diagnoased with vaginal melanoma 2.5 years ago and now PET scans and CT scan both show that she lymph nodes in her lungs and her pelvic cavity (which we are not quite sure about ) coz the CT scan on June 30 shows the lymph nodes have shrunk a lot compared with the scan performed on May 31. Anyway, I want to take her to the States for accurate dignosis and for advanced treatment to control the progress of her disease. I am now contacting Moffitt Center at Tampa Florida and also MD Anderson in Houston. Anyone here who's also got mucosal melanoma could recommend one good hospital for us to go to coz I know without American health care insurance, it is very expensive to make this trip to get treatment, so we do want to make the best and right choice for my sister. Please kindly offer your opinions and thanks in advance.

Fenny from China

Make Each Second Count!

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Replies by: MaryD, LynnLuc, Linny, Gene_S, susanr

I'm from China and my sister was diagnoased with vaginal melanoma 2.5 years ago and now PET scans and CT scan both show that she lymph nodes in her lungs and her pelvic cavity (which we are not quite sure about ) coz the CT scan on June 30 shows the lymph nodes have shrunk a lot compared with the scan performed on May 31. Anyway, I want to take her to the States for accurate dignosis and for advanced treatment to control the progress of her disease. I am now contacting Moffitt Center at Tampa Florida and also MD Anderson in Houston. Anyone here who's also got mucosal melanoma could recommend one good hospital for us to go to coz I know without American health care insurance, it is very expensive to make this trip to get treatment, so we do want to make the best and right choice for my sister. Please kindly offer your opinions and thanks in advance.

Fenny from China

Make Each Second Count!

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I'm from China and my sister was diagnoased with vaginal melanoma 2.5 years ago and now PET scans and CT scan both show that she lymph nodes in her lungs and her pelvic cavity (which we are not quite sure about ) coz the CT scan on June 30 shows the lymph nodes have shrunk a lot compared with the scan performed on May 31. Anyway, I want to take her to the States for accurate dignosis and for advanced treatment to control the progress of her disease. I am now contacting Moffitt Center at Tampa Florida and also MD Anderson in Houston. Anyone here who's also got mucosal melanoma could recommend one good hospital for us to go to coz I know without American health care insurance, it is very expensive to make this trip to get treatment, so we do want to make the best and right choice for my sister. Please kindly offer your opinions and thanks in advance.

Fenny from China

Make Each Second Count!

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Gene_S's picture
Replies 3
Last reply 7/9/2012 - 2:18pm
Possible resources for my fellow warriors that convention medicine is not helping!
 
 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Nicky's picture
Replies 6
Last reply 7/13/2012 - 12:00pm

Hi everyone, I thought I would check in and let you all know that I'm still alive and kicking melanoma.

I had an annual checkup at the melanoma outpatients here in Brisbane at the Princess Alexandra Hospital this week and I'm pleased to say I am still NED.  The hospital doctor who I haven't seen before was having a hard time reading my history because I've had so many bouts of melanoma and yet here I am nearly my 13th year Stage III and still beating it.

I have updated my patnet under " Nicky" to help anyone struggling with this disease.  I remain positive and even though I am getting on with life, I always remain vigilant.

If anyone is new to this disease, it is not necessarily a death sentence, everyone is different.  There are still people surviving melanoma, they are just getting on with their lives and may not necessarily post.

This board has always been there for me along this journey and I just want to wish you all the best and thank you.

 

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