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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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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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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Anonymous's picture
Anonymous
Replies 9
Last reply 4/9/2012 - 2:29pm
Replies by: Anonymous, Gene_S, washoegal

A bunch of us have teams and it is a great day for the kids.  May 12th, over 2000 folks who are there to support their family member.

www.safefromthesun.org

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ElaineLinn's picture
Replies 5
Last reply 4/9/2012 - 1:35pm

I just had surgery on a 2 1/2 cm brain tumor and done the muskadermas trial this was 3 weekago. Just found out today that while doing my ct cans for radiation that I now have more tumors. So I will be going under the Gama Knife radiation, and hopefull this takes care of these turmos. Then I will doing the Tremadol trial. I  wish I knew more about this study but right now I am running out of choices. I know that if its Gods will it will be done and I really believe that god will heal me, or he has other plans for me. I guess we will find out real soon

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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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KevinM's picture
Replies 14
Last reply 4/8/2012 - 9:32pm
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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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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Hi Everyone,

I just wanted to know who started ipi after finishing gamma knife?  I know Kyle is one of the people, so I wanted to know if there is anyone else?  I havn't had any steroids and I don't want to take any as I know it could mess up the ipi.  I might have to though, cause I do feel a bit of weakness in my right hand and it's quite possible it's the edema and I don't ever know if the ipi is causing inflammation.  I'm really hoping that ipi this time around keeps any other tumours growing and thankfully, I'm going every 2 months.

Thanks,

Lisa

Many impossible things have been accomplished for those who refuse to quit

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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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Jeff's Mom's picture
Replies 5
Last reply 4/5/2012 - 10:26pm

It's been a tough two weeks - Jeff finished his final IL2 treatment on March 15th (did 19 bags total - it was brutal, but he was willing to endure anything to get a positive response).  We were waiting and waiting (scan was scheduled for April 11th) to see some improvement in his overall condition, but he just seemed to be spiraling downward.  He was so exhausted, nauseated and pale - it was getting scary.  He finally went to the hospital on Thursday  (the 29th) because he had a fever and we were worried about hepatitis (he looked jaundiced).  Doc didn't like the way he looked, so Jeff had an early scan.  Tumor progression in the liver - serious and fast progression...

He is now on Zelboraf.  He seems better, but he's been on it for just a few days (2 to be exact).  Can it work that fast?  

I am worried about what to do next.  What will we do if the Zelboraf stops working?  How much time will we have to get him into another treatment?  What are our options - ippi and anti-PD1 might take too long to work for him - his cancer is aggressive.  We are trying to cover our bases - 2nd opinion scheduled at Moffit (hoping to find out more about the XL888 study) and have contacted UCLA about Dr. Lo's DNA sequencing work on Zelboraf resistance.  

This site has been so important to us - we read it everyday and are inspired by so many positive stories.  Thanks in advance for any advice.  

Jeff's Mom 

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Gene_S's picture
Replies 1
Last reply 4/5/2012 - 8:54pm
Replies by: Webbie73
 

Mohs Most Cost-Effective Treatment for Skin Cancer

Yael Waknine

 April 3, 2012 — Mohs micrographic surgery (MMS) represents the most cost-effective treatment for skin cancer, according to an article published online March 22 and in the April print issue of Dermatologic Surgery.

MMS is a method of excising a tumor and the surrounding skin with the help of a microscope, allowing the dermatologic surgeon to trace the outline of a cancerous growth, layer by layer, with exceptional accuracy. The method is associated with significant tissue sparing, resulting in smaller simpler repairs or an option to let the wound heal by secondary intention.

Investigators led by Larisa Ravitskiy, MD, from the Ohio Skin Cancer Institute at Ohio State University in Columbus, performed a cost analysis with respect to 406 tumors that were cleared with a mean of 1.6 stages (range, 1 - 8 stages). The expenses related to subsequent re-excision and reconstruction and tumor recurrence were added to the final estimate.

Results showed that MMS was the least expensive of surgical options ($805/tumor) compared with standard surgical excision (SSE) with permanent margins ($1026), SSE with frozen margins ($1200), and SSE performed in an ambulatory surgery center ($2507).

"The common misperception of MMS as an expensive option has its roots in the poorly understood bundled reimbursement of the procedure, which includes costs of surgical excision, histology preparation, and pathology," the authors write, noting the increased use of MMS in an aging population with a greater incidence of skin cancer.

In fact, the cost of MMS when adjusted for inflation (including initial exam, biopsy, and 5-year follow-up) was lower in 2009 than in 1998 ($1376 vs $1635).

The authors suggest that clinicians should be aware that MMS offers low recurrence rates; smaller defects, resulting in simpler, less-costly repairs; and overall cost efficacy.

"Once the effect of MMS on economic savings and cure rates is recognized, restrictions on the use of MMS will be lifted. The cost and value inherent in MMS rightfully prioritize it as the treatment of choice for cutaneous malignancies," the authors conclude.

The authors have disclosed no relevant financial relationships.

 

Authors and Disclosures

Journalist
Yael Waknine

Yael Waknine is a freelance writer for Medscape.

Yael Waknine has disclosed no relevant financial relationships.

Dermatol Surg. 2012;38:585-594. Abstract

Medscape Medical News © 2012 WebMD, LLC
Send comments and news tips to news@medscape.net.

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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H555's picture
Replies 4
Last reply 4/5/2012 - 7:53pm

My primary was in 1995, after 10 years of dermatologist screenings (and no recurrences) i never gave it another thought. Last spring i found a swollen lymph node near my groin and my PC had the good foresight to have scans run. June 30th, same day I retired, i had 17 lymph nodes removed from my right inguinal area and upper thigh on my right leg. only one was malignant but there was extension outside the node. i was tested for the BRAF mutation and i haveit. I did radiation in september and then 10 Interferon IV treatments in November and my oncologist and i both agreed after 3 weeks it was taking too much of a toll on my body, by the 10th treatment i couldn't force more than a couple of glasses of water down a day.

 

about two weeks ago I developed a dry cough, after a week of that my PC (again) sent me right out for a chest xray and a wet read, came back as multiple masses/nodules in my lungs. saw my medical oncologist two days later and he set me up with Zelboraf, then had my radiation oncologists (who's done IGRT for prostate cancer for me and high dose radation on the area where my lymph nodes were removed last september). The top lobe of my left lung is partially collapsed and i have one node that's about 3 centimeters blocking an airway. I'm starting radiation today for that node to improve my breathing. I haven't gotten a call from the speciality pharamacy yet, yesterday my medical oncologist said he'd "lean on them" - i'm guessing teh hold up is because I have double coverage (thank God i kept my health insureance going after i retired).

 

I'll post more as this plays out. I'm optimistic about the Zelboraf and know there are several other drugs available if my cancer becomes resistant. sure not how i envisioned retirement tho. if you pray, i'd sure be grateful for prayers. this has stunned my whole family - which has since day one declared we're all in this together. I have a great support system, am in otherwise good health, have lots to look forward to, including a trip to Kenya this summer to visit our youngest son who's in the Peace Corps in Kenya. thank you.

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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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