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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Misty Dobson Duanes sister's picture
Replies 6
Last reply 10/13/2010 - 12:45am

Hi friends,

This bulletin board is all too familiar to me....I just lost my brother January 30,2010 after he fought Melanoma for almost 8 years. I found this bulletin board years ago and after my brother passed and I posted the news I did not return to the bulletin board because for many reasons related to grief and coping.I miss my brohter desperately and I was with him until after his last breath, I told him I would continue fighting Melanoma in his name and that I would tell people how amazing he was.....this is my Mission in life until the day I die I will fight Melanoma.

Now I need your help. I am putting together a presentation so that I can talk to school aged kids about Melanoma and hopefully prevent a Melanoma diagnosis. I need to put some stories together ..I especially need to accompany the stories with a picture of the person who has had Melanoma whether they are a survivor or since passed from this horrible cancer. I need these young people  to relate and the best way to do that is to put together something that will keep their attention....in particular younger people and people that as a young person did something they feel may have led to a Melanoma diagnosis.

Please contact me at mistydobson@gmail.com. I would love to share yours or your loved ones story with others so that we can make a positive impact and save lives with awareness..... Please help. I look forward to hearing from you.

Sincerely,

Misty Dobson

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I am starting the 2nd week of iv interferon.  I am stage 3a.  I was told I only need to do 30 days iv, but a friend that was also diaganosed stage 3a was told he must do the entire year of treatment.  What are your thoughts? 

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I am starting the 2nd week of iv interferon.  I am stage 3a.  I was told I only need to do 30 days iv, but a friend that was also diaganosed stage 3a was told he must do the entire year of treatment.  What are your thoughts? 

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ed_CT's picture
Replies 16
Last reply 1/14/2011 - 2:15pm

More good news to share with "the community".   Just had my latest CAT scans and I'm still NED now just over 5 years since going Stage IV, 6 years since initial diagnosis at Stage III.    A brief history-  Diagnosed with Melanoma on left ear  Sept 2004.  One sentinal node microscopic involvement.   Went on a Cancer Vax trial in Jan 2005.   Scans 6 months later showed it had spread to liver and neck.  Had tumor removed from Neck - left Mel in liver so I could do a trial.   Started trial of Nexavar and Temodar.   Also went on an almost Vegan diet (ate some fish) and started taking Tumeric supplements.   Within 4 months liver Met had shrunk to "scar tissue".  Stayed on drugs at full strength for 1 year.   After 1 year they reduced the Nexavar dose by 1/2 and kept Temodar the same.  Stayed on this regimen for another year and then dropped the Temodar (this ended my involvement in trial).   Stayed on the Nexavar alone (still 1/2 dose with lots of breaks - more as time wore on) until I finally ended it in Dec 2009.   I still take Tumeric but not as regularly as I probably should and I have started eating some meat, eggs - dairy in the last couple years  although I still eat lots of vegitables and drink soy milk and avoid meat most of the time thanks to a very good wife (I guess she still wants to keep me around).  Unfortunately from what I understand out of 146 people in my trial of Nexavar / Temodar,  I was the only one with a "complete response".  I'm sorry it didn't work out for more people. I'm a little disappointed that my Onc at Yale still thinks I should get scanned in six months but I guess caution is a good thing.   Maybe I can convince the people at U of Penn I see to let me go 9 months.  

Hope this post gives people here some  bit of inspiration.   There a quite a few of us "Stage IV" survivors lurking on this board.  

 

Best wishes

Ed from Connecticut ("Ed_CT" - formerly just "Ed" until they forced me to change it.)

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Charlie S's picture
Replies 11
Last reply 11/14/2010 - 6:18pm

Almost to this minute, four years ago is when my ear on your chest  heard your last and final physical heartbeat ..

Wherever you are, the beat goes on.

Smooch.

Charlie S

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killmel's picture
Replies 2
Last reply 10/13/2010 - 3:22pm
Replies by: Sherron, Amy Busby

Hi Amy,

 

I have been away from awhile and just saw your post to Jamie.

You are always in my thoughts....I hope you are doing well. Please post an update. We all love you!

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Jaime.30's picture
Replies 2
Last reply 10/9/2010 - 7:08pm
Replies by: Jaime.30, amybusby

Eston was on Interferon for 10 months and it was stopped in late August due to what was thought to be stage progression to stage IV...so far doctors say the inflammation in his brain was not from Melanoma because not one cell was found.   He still seems to have what we call around here Interferon fog...memory slips or sometimes he just does not seem with it and some days he will wake up and you would have thought that he had just had a shot because everything hurts.  His joints are sore most of the time still.  I was wondering if this happens with a lot of Interferon patients.  Will these side effects go away eventually.  We have not seen the Oncologist since stopping the Interferon to ask these questions because he has been seeing the Neurosurgeon and was expected to go on to do WBR...so his appointment is not until the end of the month.  Thank you Jaime

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EricNJill's picture
Replies 11
Last reply 10/14/2010 - 4:45pm

Eric's vacular tumors have been bursting.  We've been bandaging them up and tonight I changed one of the bandages because it was seeping so bad that it saturdated his sock at work today.  When I removed the bandage the odor was so bad I almost got sick.  I cleaned it with alcohol and still the odor was from the tumor awful.  His leg has recently become very swollen and this area as well as an area on his thigh where he has other vascular tumors is red.  I outlined the redness in pen to see if it grows, but I'm beginning to think he may have an infection.  I have never smelled an odor like that from his vascular tumors after they burst.  He is also running a fever of 99.1 right now.

I called earlier to our specialist in another state but they were gone.  What are your thoughts?  Anyone else had this happen?

Thanks, JillNEric in OH

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Anonymous's picture
Anonymous
Replies 4
Last reply 10/9/2010 - 8:36am
Replies by: A, Janner, EricNJill, Jaime.30

I recently developed pimple-like thing which is not a pimple. It is red in color and drives me crazy when I think about skin metastases. However, when I press on it, the color goes away. Is it possible for skin metastases to  "blanch"????

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Janet2's picture
Replies 8
Last reply 10/10/2010 - 5:40am
Replies by: Janet2, Anonymous, Sharyn, lhaley, jag, Linda/Kentucky

I was admitted to hospital at the weekend and am home now -- was getting dehydrated from vomiting/sickness and had severe headache/dizziness. CT scan shows carboplatin hasn't worked and all my tumours have grown plus new ones. Also, I now have a tumour on my brain and a subcutaneous one at the back on the right-hand side. I've been told to have a week's quality of life and it is planned I should start whole brain radiation to deal with the symptoms and help with with quality of life the following week. I was wondering if anyone has had the whole brain irradiated and if so what are the side-effects during treatment and more long-term ones afterwards. Also, how long after treatment do the longer-term ones start and how long do they usually last? It is planned that I should have two sessions three -- four days apart. I am having radiation to tumour by right hip as well. They are leaving the rest of my cancer so I don't know how it will behave and don't know if they will recommend any further treatment as they say I may not be well enough. I have already been turned down for  Ipilimumab due to my mobility problems. Any information would be appreciated. By the way I live in the UK.

Janet 

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Hi Lauren,

 

Glad tosee you posting. How is Jenna doing? Hope her treatment is working.God Bless and hoping you have good news to post.

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Connie's picture
Replies 5
Last reply 8/5/2013 - 8:28am

If anyone out there has any information or been thru treatment for radiation burn and an open wound in a melanoma site, I would appreciate any help you could offer.  My Mom had a very large tumor removed in June in her inguinal canal which was a melanoma, probably metastasis from her big toe which was amputated 5 years ago. The surgical site healed very well. She has two other deeper tumors in her pelvis, that they have left alone as they said her quality of life would be affected. She chose not to do chemotherapy as she is 82 and did not want to feel sick with what time she had.  About 4 weeks after her surgery, a lump reappeared in the area of the tumor that had been removed. Since her lymph glands were involved in the surgery, the surgeon did not want to drain that area as he felt she could end up with a permanent drainage. Her oncologist offered radiation as a way to get microscopic cells left behind in the surgical site and "slow things down". Her organs have been clear.  She had 4 weeks of 5000  ???Grays a day. By week 3 she was badly burned ( raw area on inside of left thigh around 5 to 6 inches long by almost 2 inches wide) and the lump was still there.  Prior to radiation I read the radiologist report which said the lump was fat. They continued treatment until completion. She was told she could end up with a bad sunburn. She ended up with her skin turning black.  She had her do rinses 3 times a day to the site and apply a burn cream.  Early this week she got feverish and yesterday ended up in the hospital. Yesterday where the lump was, (and is?), opened up and a bunch of ( my sister said) blood and pus came pouring out.  She lives in Montana and I live in Washington and I have called my sisters as I feel she needs some Doctors who know about wound care.  The site is being packed and she is on IV antibiotic..  Does anyone know about hyperbaric medicine and wound healing?   Has anyone had a similar experience and has gotten good treatment?  Her skin that was healing from the burns has also been impacted by the infection and/or fluid accumulatiion.  Do you know of ointments or dressings that you have used to keep one area dry and healing while another area close by, is draining and packed? Has anyone had lymphedema cause a similar wound and if so how did they treat your wound? I will be going home soon and any help on what to ask and what to do would be greatly appreciated.

Sincerely,

Connie

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Connie's picture
Replies 4
Last reply 10/11/2010 - 6:58pm

If anyone out there has any information or been thru treatment for radiation burn and an open wound in a melanoma site, I would appreciate any help you could offer.  My Mom had a very large tumor removed in June in her inguinal canal which was a melanoma, probably metastasis from her big toe which was amputated 5 years ago. The surgical site healed very well. She has two other deeper tumors in her pelvis, that they have left alone as they said her quality of life would be affected. She chose not to do chemotherapy as she is 82 and did not want to feel sick with what time she had.  About 4 weeks after her surgery, a lump reappeared in the area of the tumor that had been removed. Since her lymph glands were involved in the surgery, the surgeon did not want to drain that area as he felt she could end up with a permanent drainage. Her oncologist offered radiation as a way to get microscopic cells left behind in the surgical site and "slow things down". Her organs have been clear.  She had 4 weeks of 5000  ???Grays a day. By week 3 she was badly burned ( raw area on inside of left thigh around 5 to 6 inches long by almost 2 inches wide) and the lump was still there.  Prior to radiation I read the radiologist report which said the lump was fat. They continued treatment until completion. She was told she could end up with a bad sunburn. She ended up with her skin turning black.  She had her do rinses 3 times a day to the site and apply a burn cream.  Early this week she got feverish and yesterday ended up in the hospital. Yesterday where the lump was, (and is?), opened up and a bunch of ( my sister said) blood and pus came pouring out.  She lives in Montana and I live in Washington and I have called my sisters as I feel she needs some Doctors who know about wound care.  The site is being packed and she is on IV antibiotic..  Does anyone know about hyperbaric medicine and wound healing?   Has anyone had a similar experience and has gotten good treatment?  Her skin that was healing from the burns has also been impacted by the infection and/or fluid accumulatiion.  Do you know of ointments or dressings that you have used to keep one area dry and healing while another area close by, is draining and packed? Has anyone had lymphedema cause a similar wound and if so how did they treat your wound? I will be going home soon and any help on what to ask and what to do would be greatly appreciated.

Sincerely,

Connie

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Mark_Catskill's picture
Replies 16
Last reply 10/11/2010 - 11:04pm

Hi Everyone.  I haven't logged in in a long time.  I am here to reassure everyone that it can be done.  Four years after developing both lung and brain metastasis, I uave noevidence of active disease.  A few old, asymptomatoc  tumors still show up on scans but they have not changed in over a year.  I am "stable" and the prognosis that I will remain stable is very, very good.

 

If you wanr to read about all the treatments I have had I just updated my medical history on my profile.  Just search for Mark_Catskill.

 

I will try to visit more frequently to share my experience and knowledge with the MPIP community.

 

Mark from Catskill
 

I have cancer but cancer does not have me.

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Hi Everyone.  I haven't logged in in a long time.  I am here to reassure everyone that it can be done.  Four years after developing both lung and brain metastasis, I uave noevidence of active disease.  A few old, asymptomatoc  tumors still show up on scans but they have not changed in over a year.  I am "stable" and the prognosis that I will remain stable is very, very good.

 

If you wanr to read about all the treatments I have had I just updated my medical history on my profile.  Just search for Mark_Catskill.

 

I will try to visit more frequently to share my experience and knowledge with the MPIP community.

 

Mark from Catskill
 

I have cancer but cancer does not have me.

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