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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aldakota22's picture
Replies 2
Last reply 4/8/2012 - 4:40pm
Replies by: bikerwife, yoopergirl

  Want to wish all the fighters and their families a HAPPY EASTER  or  PASSOVER.May we all be here for next years holidays ,even better that we are today.God bless you all.       Al

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CaringforMom's picture
Replies 10
Last reply 4/10/2012 - 10:31pm

Sad to report that we began Hospice this week for my Mom.

She fought with all the strength she had, but the agressive cancer has overtaken her.

Additional mets in brain, tumors still growing in liver, lungs, abdomen, bowel.

Just too much to fight.

Hospice has been a huge blessing already.

The doctor did not give much of a time estimate, other than 1 to three months.  He also added that this is a very agressive cancer.

I think if we were more agressive early on, if ipi had been available earlier.....a lot of "what ifs" running through my brain right now.

 

Be agressive with your options - request ipi early and the BRAF test early.

 

There are a lot of great new methods/drugs available and my gut tells me that if we were able to get those new therapies earlier we would have had more of a chance of recovery and more years with my Mom.

Keep fighting everyone!

Thank you for sharing, for your posts and for sharing information.

You have all been a blessing to me.

Would love any information from those who have entered Hospice from Stage IV.....what kind of time do we really have??

Thanks so much.

I can do all things through Christ who strenthens me.

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Sad to report that we began Hospice this week for my Mom.

She fought with all the strength she had, but the agressive cancer has overtaken her.

Additional mets in brain, tumors still growing in liver, lungs, abdomen, bowel.

Just too much to fight.

Hospice has been a huge blessing already.

The doctor did not give much of a time estimate, other than 1 to three months.  He also added that this is a very agressive cancer.

I think if we were more agressive early on, if ipi had been available earlier.....a lot of "what ifs" running through my brain right now.

 

Be agressive with your options - request ipi early and the BRAF test early.

 

There are a lot of great new methods/drugs available and my gut tells me that if we were able to get those new therapies earlier we would have had more of a chance of recovery and more years with my Mom.

Keep fighting everyone!

Thank you for sharing, for your posts and for sharing information.

You have all been a blessing to me.

Would love any information from those who have entered Hospice from Stage IV.....what kind of time do we really have??

Thanks so much.

I can do all things through Christ who strenthens me.

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KevinM's picture
Replies 5
Last reply 4/10/2012 - 1:05am

I was diagnosed in March of 2006 with stage 3 (golf ball sized axillary lymph node) with an unknown primary. I completed 3 rounds of Bio-Chemo at Beth Israel in Boston and remain NED. I have no idea if it was the treatment or not but I am thankful that I chose to be aggressive in my fight.

As many of you know, I love to run and have always used it as a means to judge my health and also to celebrate it. So in just over a week I will be running The Boston Marathon for the 12th time. It will also be my 20th marathon. For the past several years I 'I've run with the Melanoma Foundation of New England Team. Many team members are either survivors, caregivers or have family members that have been impacted by melanoma. It is great to share a determination to spread the message of prevention and early detection.

This year I am running in memory of Jerry Sullivan (Jerry from Cape Cod). I met Jerry at a MFNE event and have been inspired by him since. We traded many emails during the past few months. He especially liked it when I toasted him with a cold Sam Adams after the Hyannis 1/2 Marathon. I plan on doing the same after Boston!

I've often said that melanoma might kill me but will never beat me.....cheers to all that feel the same! 

Carpe Diem!
Kevin

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KevinM's picture
Replies 3
Last reply 4/7/2012 - 12:50pm
Replies by: Wilson, michelleg, Linny

I was diagnosed in March of 2006 with stage 3 (golf ball sized axillary lymph node) with an unknown primary. I completed 3 rounds of Bio-Chemo at Beth Israel in Boston and remain NED. I have no idea if it was the treatment or not but I am thankful that I chose to be aggressive in my fight.

As many of you know, I love to run and have always used it as a means to judge my health and also to celebrate it. So in just over a week I will be running The Boston Marathon for the 12th time. It will also be my 20th marathon. For the past several years I 'I've run with the Melanoma Foundation of New England Team. Many team members are either survivors, caregivers or have family members that have been impacted by melanoma. It is great to share a determination to spread the message of prevention and early detection.

This year I am running in memory of Jerry Sullivan (Jerry from Cape Cod). I met Jerry at a MFNE event and have been inspired by him since. We traded many emails during the past few months. He especially liked it when I toasted him with a cold Sam Adams after the Hyannis 1/2 Marathon. I plan on doing the same after Boston!

I've often said that melanoma might kill me but will never beat me.....cheers to all that feel the same! 

Carpe Diem!
Kevin

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yoopergirl's picture
Replies 1
Last reply 4/9/2012 - 3:11pm
Replies by: Dave G

Well started taking 5 mg in the morning of the prednisone and for the past 3 days have had diarreha just in the morning so I called the Oncologist and they think since it just is in the morning that the prednisone isn't getting into my system until the afternoon so I might have a harder time just stopping it on Sunday. We will be traveling on Monday to Arkansas and they said if it comes back really bad then to call them and go back on the prednisone sure hope that doesn't happen. Anyone else have this problem?

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beatricefromPARIS's picture
Replies 3
Last reply 4/16/2012 - 5:11pm

Hi all

After one month on Zelboraf, palpable tumors have greatly reduced but I find it very tiring.  Basically I stay in bed over 50% of the day, whereas before I was in much better shape before (apart from mel growing!).

The joint pain is high but not the same every day. I was wondering whether it can be impacted by nutrition. Should I reduce dairy products for example? Has anybody noticed any such correlation?

I take the 4 pills away from meals but it seems that the lab is now changing its guidance on this to "during meals". Confusing!

Also, I keep reading on the net about successful stage IV Zelboraf patients who have been taking it for many months/even years...That's nice because it means it is working ! But my first impression is that the quality of life can be low...  

Is there anyone around who took Zelboraf, became NED and could stop the medication?

 

 Beatrice Stage IV since feb 2009, 7th treatment underway.

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Kelly7's picture
Replies 7
Last reply 4/9/2012 - 2:57am

Is it possible to start with IL2, then try Yervoy, and if it doesn't work to try IL2 again?

 

I am worried that my brother's doctor has given up too quickly on IL2. He showed some positive results with it, but the doctor wants to move on to Yervoy asap. I feel because he is Braff Negative, that Yervoy might be his last option for medicine. Im I way off?

 

Any advise would be great!

Thank you-

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Gene_S's picture
Replies 1
Last reply 4/9/2012 - 2:33pm
Replies by: Anonymous

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

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Lowie's picture
Replies 1
Last reply 4/5/2012 - 8:47pm
Replies by: Janner

My daughter had a small spot removed from her back, it was originally light brown with a slightly raised dark brown center, unusual shape. They only took off the top layer (I guess), not like a deep incision. When the scab first fell off the skin underneath was a pale pink throughout. Now a similar dark spot to what she had before is showing through the spot. To the touch it feel perfectly smooth, not rough like a scab would.

I have a call in to the doctor, but could this really be the same thing growing back?

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Hi everyone

My husband will begin Yervoy next week.  I want to stay ahead of the game and make sure he's getting good nutrition during the treatment.  Any suggestions from those that have been through the treatment and what worked best for you?  Also how did you handle side effects?

Thanks.

Rea 

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Rea's picture
Replies 5
Last reply 9/21/2015 - 8:45pm

Hi everyone

My husband will begin Yervoy next week.  I want to stay ahead of the game and make sure he's getting good nutrition during the treatment.  Any suggestions from those that have been through the treatment and what worked best for you?  Also how did you handle side effects?

Thanks.

Rea 

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markd here and i just wanted to say how much this board and you people have helped me.thanks and i hope to hear from other stage 2a patients.god bless.

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Replies by: patobs01

Hi!

My name is Jayme Dodd and I work for 20/20 Research, a national marketing research firm, and we are currently conducting a research study in conjunction with Quintiles Market Intelligence, a health care research firm.  We are looking to get in touch with patients diagnosed with melanoma.    I wanted to see if you would be willing to post this study information in your web site, or send an email to your members or subscribers.  If so, here is the study information below and we appreciate your help in this important research initiative. 

 

We would like to ask you to participate in a research study about your experiences with treatment.  We will be asking you for specific examples, but avoiding any details that would make it possible to identify you.  Unlike many other research interviews, this is not a survey.  This is strictly a research study; no sales of any kind will be involved and all responses will be held in strict confidence.

 

We are offering a $50 referral to anyone who refers a qualified participant for this study, so please forward this to anyone that you think may qualify.  If you have someone to refer, you can have them call us directly at 615-724-6076, or email jaymed@2020research.com.  If you are a referral, please be sure to notify the recruiter who referred you.

 

Those who qualify will be asked to participate in a 45-minute, phone interview

 

The interviews are being schedule the week of April 16th at various times each day, and participants will receive a $100 Prepaid Visa as a thank you for their complete participation.

 

If you are interested in this study, please call us at 615-724-6076 (Suzanne) to go through a short screening questionnaire.  If you receive voicemail, please leave your name, telephone number, and the best time to reach you by phone.

 

If you prefer to go through a short online pre-screener, please visit: https://www.surveygizmo.com/s3/887590/

 

For more information about 20/20 Research, please visit www.2020research.com

Hi!

My name is Jayme Dodd and I work for 20/20 Research, a national marketing research firm, and we are currently conducting a research study in conjunction with Quintiles Market Intelligence, a health care research firm.  We are looking to get in touch with patients diagnosed with melanoma.    I wanted to see if you would be willing to post this study information in your web site, or send an email to your members or subscribers.  If so, here is the study information below and we appreciate your help in this important research initiative. 

 

We would like to ask you to participate in a research study about your experiences with treatment.  We will be asking you for specific examples, but avoiding any details that would make it possible to identify you.  Unlike many other research interviews, this is not a survey.  This is strictly a research study; no sales of any kind will be involved and all responses will be held in strict confidence.

 

We are offering a $50 referral to anyone who refers a qualified participant for this study, so please forward this to anyone that you think may qualify.  If you have someone to refer, you can have them call us directly at 615-724-6076, or email jaymed@2020research.com.  If you are a referral, please be sure to notify the recruiter who referred you.

 

Those who qualify will be asked to participate in a 45-minute, phone interview

 

The interviews are being schedule the week of April 16th at various times each day, and participants will receive a $100 Prepaid Visa as a thank you for their complete participation.

 

If you are interested in this study, please call us at 615-724-6076 (Suzanne) to go through a short screening questionnaire.  If you receive voicemail, please leave your name, telephone number, and the best time to reach you by phone.

 

If you prefer to go through a short online pre-screener, please visit: https://www.surveygizmo.com/s3/887590/

 

For more information about 20/20 Research, please visit www.2020research.com

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Hi everyone,

 

So, my brother had 3 legions on his lung and in February he did 20 bags of IL2, it was his first dose of IL2. He just went in today to get the results of his scan and the doctor said that one legion has completely disappeared, and the other two show less intensity, however didnt shrink. There were no new  legions formed. The doctor said it was positive results, but not enough to contiue with IL2. He wants to start him on Yervoy next week. He tested negative for the braff mutation.

My questions are the following-

Is this normal protocol to move on to Yervoy after only completing one round of IL2?

Can he go from Yervoy back to IL2 if needed?

Isnt the IL2 still working to boost his immune system? Will it work better in conjunction with the Yervoy?

 

Thank you so much for any info you can give me. Im trying to stay positive and see the positive....he had 3 legions, now he has 2, but I am still so scared of what is to come.

 

Thank you!

 

Kelly

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