MPIP: Melanoma Patients Information Page

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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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Anonymous's picture
Anonymous
Replies 2
Last reply 8/16/2010 - 10:16pm
Replies by: King, DonW

My 76 yo father was diagnosed last October  with a 6mm melanoma on his scalp. After initial removal and biopsy, he had flap surgery at the Va in Long Beach in November to remove any tumor residue and widen the margins. We went to the VA in Long Beach because Dr. Jakowatz heads up the melanoma program there and we wanted to see a melanoma specialist. No treatment was recommended after the surgery due to my father's age and the likely hood that he could not withstand it.

A second follow up in June revealed mets to the lymph nodes in the neck. At that time a neck dissection was recommended to remove the nodes. My father went for a second opinion and it was revealed that mets to the lungs existed, so a neck dissection was NOT recommended. He was started on Temodar 5 days per month. He withstood the treatment well, with nothing more than being tired. However, he did develop difficulty walking and Bell's Palsy. The last lung scan revealed that the Temodar is not working and the tumors are growing. Last week he began to have pain in his clavicle area and problems with moving his right arm.

Today we brought him to the emergency room, because he was in such pain and it was discovered that his clavicle has a pathological break. 

At this time he may need more care than the family can give him and I'm getting the feeling that he is a candidate for Hospice, but we are unsure how to proceed. In some ways it is difficult to give up hope, but we know the seriousness of the situation and the course of the disease when diagnosed late. My father doesn't want to burden his family with his care and frankly I'm not sure that family care would be in his best interest at this point. Of course we want to support him and be there for him. 

Can anyone give me some direction on how to proceed. I would appreciate it greatly. 

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pam from jersey's picture
Replies 3
Last reply 8/16/2010 - 9:03pm

I'm having a lymph node disection surgery on the 27th - I'd like to hear some opinions in this as well  - THANKS!

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Jim in Denver's picture
Replies 2
Last reply 8/16/2010 - 8:26pm

Showtime has the first episode on their website if you want a freee preview:

http://www.sho.com/site/video/brightcove/series/title.do?bcpid=69609888001&bclid=292231022001

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skysar's picture
Replies 11
Last reply 8/16/2010 - 8:03pm

Spoke with Dr. Hwu at MDA yesterday regarding the IPI/Temodar trial.  If you are enrolled in this trial at MDA,  I would be interested in finding out how you are tolerating side effects and also handling travel if you don't live in Houston?

Thanks for your help.

Sue 

Stage IV, lung mets

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Sharon in Reno's picture
Replies 6
Last reply 8/16/2010 - 7:53pm

just cuz.....I just signed up to get Showtime so I can watch the "The Big C' this Monday night at 10pm with Laura Linny (did I spell that right?). Can't wait to see how they play this out. Grey's Anatomy was too dramatic lets see how a little comedy can help spread the word. I like laughter, has saved my sanity many times....we'll see.cool love ya, Sharon in Reno Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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ErikaHouston2's picture
Replies 3
Last reply 8/16/2010 - 5:54pm

Of course I am paranoid of anything that is not quite normal...but have had back pain (dull ache) for a little over a week now that is not getting better. It also seems to move around (can't pinpoint exactly where it is). I was diagnosed with Stage I nearly 2 years ago, and had WLE. I have since recently had a Chest Xray as well as an abdominal CT scan (for unrelated GI bleeding). Would either of those scans show possible mets to spine? I am treated at MDA and trying to get in again to discuss this with the MD, just curious what others have felt that have had mets to spine. 

I'm just so paranoid as I have two small children. Feel free to tell me I am overreacting as well !

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I just spoke to Sue and Todd, Jerry's wife and son, he remains in critical condition on a ventilator, with head and facial injuries.  He has not responded in 36 hours but is on a Sublimaze and Versed drip, so this is not unusual.  His vital signs, B/P, heart rate, are now stable.  He is in St. Anthony's Central, Denver CO.  Room 206, NICU (neuro intensive care).  

Jerry has always been a very faithful person....please keep our good friend and Melanoma buddy in your prayers.  

Thank you....

debbieVA

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davidroten's picture
Replies 5
Last reply 8/16/2010 - 1:06am

Can anyone tell me about how long does it take to get over interferon treatments. We have finished our treatments and the wife seems to be as tired as ever. How long before side effects go away. Contact me at woodworker1239@hotmail.com

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ipi in DC's picture
Replies 12
Last reply 8/15/2010 - 10:23pm

Hey everyone,

I went for two month scans last week at MD and was upstaged to stage 4. Dr Bedekian gave me my options and I am going for the IPI and Temador they have started. Luckily my insurance is paying for it with a $100 copay on the Temador. I will have a IV for 90 minutes for the IPI and take the Temador one pill a day for four days at home. And repeat every three weeks. They will do scans at six weeks (two doses) to see if it is working and to go further or stop if no responce. 

I would love any thoughts, concerns or advice for these drugs and their side effects.

Thank You,

David

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nicoli's picture
Replies 10
Last reply 8/15/2010 - 7:59pm

Hi, just wanted to pop in with some good news.  I just received the results of my recent PET scan and blood tests. ALL GOOD! No sign of melanoma returning. Stage III, NED (No Evidence of Disease) since February  2010. 

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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I have spoken to sue just a little bit ago. There is a little improvement with Jerry, but still not doing well. She said the only thing that they need as of right now is a place to stay.  I am currently working on trying to contact friends and family in Denver area to find them a place to stay as I live to far away. If anyone in the Denver area or close surrounding has the space for 2-3 people or if anyone knows any one living in these areas that would be willing to open up their homes to the family that would be a great help 

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Janet2's picture
Replies 3
Last reply 8/15/2010 - 1:05pm
Replies by: Janet2, Sharon in Reno, King

My CT scan just over a week ago revealed that the tumours on my liver and in my lungs have increased in size, plus there is other new stuff. I have been turned down for Ipilimumab on compassionate grounds because of other health problems so I'm starting carboplatin on Tuesday, plus the injection in my stomach to boost white blood cells the day after.

Janet 

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Lori C's picture
Replies 5
Last reply 8/15/2010 - 6:42am

Will had his second treatment of cisplatin and Taxol Tuesday.  He's doing okay but is still struggling with hip pain and occasional other pain.  His doctor is going to increase his fentanyl patch dosage to address this. 

It's very hard to say how he's doing.  He had one nasty lesion on his head that has dried up and shrunk considerably, and one on his chest is also smaller.  He is going to have a scan on Aug. 30 and is scheduled for more chemo the next day.  He was sad today - just emotional and thinking about dying a lot.  He has days like this and they are so hard.  I am still being hopeful - it's nearly Sept and we were expecting to perhaps lose him in May, and he's definitely not worse.  On July 9 his former oncologist pretty much told us he could go into liver failure at any time and obviously that has not happened either.   But whenever he has a bad day I'm always afraid it's the start of a downhill slide, so keeping optimistic is tricky.  His nurses and doctors at Rush continue to be very helpful and pro-active, and that is a huge relief.

Please keep him in your thoughts and prayers. 

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Sharon in Reno's picture
Replies 16
Last reply 8/15/2010 - 6:32am

Hi All...just an update on what I'm doing...

Last Friday I was doing a PET scan, was in the machine and 30 minutes go by and I'm crying in pain, it's my back right where the #4 rib is, digging in my back. I can't do it and beg the guy to let me out, he does. They want to sedate me but I don't have a driver..oh well I say, catch me next time. I go do my left arm ultra sound, no problems. Monday I do a CT scan (no problems) results are back and I now have 2 new lesions on my chest wall right next to my #4 rib....flash forward after seeing onco & surgeron...they want to do day surgery  on Aug. 31. So surgery is set to remove the 2 new lesions on my left chest wall and the lump under my left arm...then we look at Ipi....geez...scar count is 27 and holding.....so thats the latest with me. love to all, Sharon in Reno Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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Bill G's picture
Replies 2
Last reply 8/14/2010 - 10:47pm
Replies by: Tim--MRF, Sherron

Haven't seen her post for some time.  Hope all is well

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