AnnaS
DIS Veteran
- Joined
- Jul 7, 2001
Hang in there. As long as all is well, the wound will heal. Hang in there, one day at a time.
Have a great time this weekend at Disney.
Melanoma and having a hard time....
- Thread starter jking6
- Start date
Hang in there. As long as all is well, the wound will heal. Hang in there, one day at a time.
Have a great time this weekend at Disney.
glammadiva
DIS Veteran
- Joined
- Oct 10, 2009
You hang in there. The healing will come and your trip to Disney will so help you with your recovery!!
snoopybabe
Mouseketeer
- Joined
- Aug 24, 2007
So sorry you are going through this. Hang in there you will heal. DH had similar open wound back in 2001 & it took time but did heal.
Enjoy Disney
Enjoy Disney
Brenle
DIS Veteran
- Joined
- Jan 8, 2008
Oh my gosh. I'm so sorry you're now suffering because of misread discharge instructions. Just awful. I hope you're totally healed soon. 
Thank you for sharing the message about checking your skin for moles, etc. It really is very important, even for those who don't spend time tanning.
I hope you have a wonderful time in Disney. Sounds like just the right treatment you need to help with your recovery.
Thank you for sharing the message about checking your skin for moles, etc. It really is very important, even for those who don't spend time tanning. I hope you have a wonderful time in Disney. Sounds like just the right treatment you need to help with your recovery.
quasar4legs
DIS Veteran
- Joined
- Oct 9, 2008
Thanks for the update and I am very sorry to hear that you have had to endure further complications and pain.
I think a change of scenery sounds lovely so have a magical trip to Disney and stay well.
Quasar
I think a change of scenery sounds lovely so have a magical trip to Disney and stay well.
Quasar
airhead
DIS Veteran
- Joined
- Sep 6, 2000
Wow. So excellent that you caught the Melanoma EARLY. You are a very lucky girl.
Seahunt
DIS Veteran
- Joined
- Jan 19, 2002
Sorry you are going through this Yesterday there was an article in our local paper about a woman diagnosed with melanoma many years ago that you might like to read:
Nancy Collins was diagnosed with Stage IV melanoma 13 years ago at the age of 62. After 10 years of treatment at the Moffitt Cancer Center in Tampa participating in the experimental Sunbelt Melanoma Trial Program, she is now cancer free. Collins learned her melanoma was caused by a sunburn she suffered as a child. With May being Skin Cancer/Melanoma Awareness Month, Nancy recently shared her experience with The News-Journal.
Q. Were there any warning signs before you were diagnosed with Stage IV melanoma?
The only warning sign I had was a brown spot on my left arm, which I ignored for years. It was the size of a dime. It began to get larger and ragged around the edge. There was no pain. My husband insisted I go to the dermatologist, but I put it off for months. I really didn't think it was anything.
Q. Was it difficult to share your diagnosis with family and friends?
I think it was harder on my husband and our sons than it was on me. I really never worried about it -- I just knew everything would be all right. We have a lot of prayer warriors in our church and I know that the prayers helped keep me calm.
Q. What type of treatment did you receive?
The melanoma on my arm was removed by Dr. John Long, who then sent me to Moffitt where Dr. Douglas Reintgen operated and removed 38 lymph nodes under my left arm pit, two of which had cancer cells. My treatment was one of the experimental trials and it turned out to be the most successful. I then returned to Moffitt twice weekly, then monthly, then every 3 months, then every 6 months and finally yearly for a total of 10 years; I had X-rays and blood work each time, and, of course, my arm was checked. Then I was discharged.
Q. Did you enjoy sunbathing and was it a shock when you knew you could never do it again?
I didn't go to the beach that often as a young person because I always burned, but it doesn't take many times to get a sunburn which will come back to haunt you as mine did. Of course, I don't go to the beach at all now and don't miss it!
Q. Who did you count on for support during recovery?
During recovery, my family, doctors and friends were my support system, especially my husband, Paul, who took great care of me.
Q. What role does diet and exercise play in maintaining a healthy lifestyle?
We know diet and exercise play a big part in maintaining a healthy lifestyle ... I'm just not good at exercising. I walk but it is always after the sun sets.
Q. Are you active in creating community awareness and prevention of melanoma?
I don't do anything special except warn people, some are complete strangers, but if they are fair skinned and sunburned, I give them a little lecture about wearing at least SPF 30 sunblock and limiting their time in the sun.
Q. Do you have any advice for others who have been diagnosed with melanoma?
If you have been diagnosed with melanoma, don't miss any appointments with your dermatologist. I'm sure your doctor will have you coming regularly. I see my dermatologist, Dr. Long, every 6 months. He is the doctor who sent me to Moffitt, probably saving my life. And if you must go out in the sun, wear that sunblock!
Q. Anything else you'd like to share?
I hope my experience will help someone else.
http://www.news-journalonline.com/l...a-with-experimental-treatment-and-prayer.html
Yesterday there was an article in our local paper about a woman diagnosed with melanoma many years ago that you might like to read:Nancy Collins was diagnosed with Stage IV melanoma 13 years ago at the age of 62. After 10 years of treatment at the Moffitt Cancer Center in Tampa participating in the experimental Sunbelt Melanoma Trial Program, she is now cancer free. Collins learned her melanoma was caused by a sunburn she suffered as a child. With May being Skin Cancer/Melanoma Awareness Month, Nancy recently shared her experience with The News-Journal.
Q. Were there any warning signs before you were diagnosed with Stage IV melanoma?
The only warning sign I had was a brown spot on my left arm, which I ignored for years. It was the size of a dime. It began to get larger and ragged around the edge. There was no pain. My husband insisted I go to the dermatologist, but I put it off for months. I really didn't think it was anything.
Q. Was it difficult to share your diagnosis with family and friends?
I think it was harder on my husband and our sons than it was on me. I really never worried about it -- I just knew everything would be all right. We have a lot of prayer warriors in our church and I know that the prayers helped keep me calm.
Q. What type of treatment did you receive?
The melanoma on my arm was removed by Dr. John Long, who then sent me to Moffitt where Dr. Douglas Reintgen operated and removed 38 lymph nodes under my left arm pit, two of which had cancer cells. My treatment was one of the experimental trials and it turned out to be the most successful. I then returned to Moffitt twice weekly, then monthly, then every 3 months, then every 6 months and finally yearly for a total of 10 years; I had X-rays and blood work each time, and, of course, my arm was checked. Then I was discharged.
Q. Did you enjoy sunbathing and was it a shock when you knew you could never do it again?
I didn't go to the beach that often as a young person because I always burned, but it doesn't take many times to get a sunburn which will come back to haunt you as mine did. Of course, I don't go to the beach at all now and don't miss it!
Q. Who did you count on for support during recovery?
During recovery, my family, doctors and friends were my support system, especially my husband, Paul, who took great care of me.
Q. What role does diet and exercise play in maintaining a healthy lifestyle?
We know diet and exercise play a big part in maintaining a healthy lifestyle ... I'm just not good at exercising. I walk but it is always after the sun sets.
Q. Are you active in creating community awareness and prevention of melanoma?
I don't do anything special except warn people, some are complete strangers, but if they are fair skinned and sunburned, I give them a little lecture about wearing at least SPF 30 sunblock and limiting their time in the sun.
Q. Do you have any advice for others who have been diagnosed with melanoma?
If you have been diagnosed with melanoma, don't miss any appointments with your dermatologist. I'm sure your doctor will have you coming regularly. I see my dermatologist, Dr. Long, every 6 months. He is the doctor who sent me to Moffitt, probably saving my life. And if you must go out in the sun, wear that sunblock!
Q. Anything else you'd like to share?
I hope my experience will help someone else.
http://www.news-journalonline.com/l...a-with-experimental-treatment-and-prayer.html
Thank you all for the info and prayers. I thought I would send an update. First my trip was great and would not of happened without a scooter.
I was in alot of pain after the flight from the air pressure but each day it was better. I can say however I hope my next trip I will be able to walk on my own. How some people think it must be nice being on a scooter its not!!!!
But if it is your only way, then go for it like I did. After all I was still at Disney.
I had a follow up appointment on Monday and my Dr. said lets keep it unwrapped and let it dry and I could start increasing my activity.
Well long story short I lost my walking papers today. Leg swelled from shopping in one store and the drainage was leaking alot even on the opposite side of my leg where I scratched it.
Now wrapped again and elevated and it could be that way for most of the summer. I just hope I have a job when all this is said and done.
Again I can not say how much your comments, prayers and thoughts have helped me get through this.
Thank You ALL!!!!!
I was in alot of pain after the flight from the air pressure but each day it was better. I can say however I hope my next trip I will be able to walk on my own. How some people think it must be nice being on a scooter its not!!!!
But if it is your only way, then go for it like I did. After all I was still at Disney.
I had a follow up appointment on Monday and my Dr. said lets keep it unwrapped and let it dry and I could start increasing my activity.
Well long story short I lost my walking papers today. Leg swelled from shopping in one store and the drainage was leaking alot even on the opposite side of my leg where I scratched it.
Now wrapped again and elevated and it could be that way for most of the summer. I just hope I have a job when all this is said and done.
Again I can not say how much your comments, prayers and thoughts have helped me get through this.
Thank You ALL!!!!!
quasar4legs
DIS Veteran
- Joined
- Oct 9, 2008
Thank you all for the info and prayers. I thought I would send an update. First my trip was great and would not of happened without a scooter.
I was in alot of pain after the flight from the air pressure but each day it was better. I can say however I hope my next trip I will be able to walk on my own. How some people think it must be nice being on a scooter its not!!!!
But if it is your only way, then go for it like I did. After all I was still at Disney.
I had a follow up appointment on Monday and my Dr. said lets keep it unwrapped and let it dry and I could start increasing my activity.
Well long story short I lost my walking papers today. Leg swelled from shopping in one store and the drainage was leaking alot even on the opposite side of my leg where I scratched it.
Now wrapped again and elevated and it could be that way for most of the summer. I just hope I have a job when all this is said and done.
Again I can not say how much your comments, prayers and thoughts have helped me get through this.
Thank You ALL!!!!!
So nice to hear from you and I am glad you were able to get to Disney and enjoy your holiday despite the difficulties, I was hoping you were having a magical time
I am sorry you lost your 'walking papers' today but I guess it is best to follow doctors orders and rest that leg.
My FIL has lots of feet/leg problems and he has an 'outdoor' lounge under the shade of an awning so that he can get outside and enjoy the outdoors during the summer.
Thinking of you and hoping you get those 'walking papers' very soon
Quasar
Just wanted to send an update. I reurned to work on Monday even though it was a long week and my leg hurt at the end of each day it was nice getting back to (normal).
Financially things have been really bad since my diagnosis with having no insurance. (over $50,000) which is over one year of our annual salary. but to still be here for my family is the most important.
Info don't move to New York I missed qualifying for state insurance by $1.04. The hardest part I think is not having Malanoma but pulling my daughter from college. She was validictorian of her class and even with $20,000 in scholarships her dream of being a pharmacist has come to and end. We can not financially make the $1,000 a month payments to ACPHS. she has to transfer to a community college as we wiped out all our savings and are still $15,000 in dept for medical bills.
Well all the said and done thank you ALL SO MUCH for your prayers, without the Disboards and support I got and just feeling a little magic for the last 4 months I have been out of work has been great.
Financially things have been really bad since my diagnosis with having no insurance. (over $50,000) which is over one year of our annual salary. but to still be here for my family is the most important.
Info don't move to New York I missed qualifying for state insurance by $1.04. The hardest part I think is not having Malanoma but pulling my daughter from college. She was validictorian of her class and even with $20,000 in scholarships her dream of being a pharmacist has come to and end. We can not financially make the $1,000 a month payments to ACPHS. she has to transfer to a community college as we wiped out all our savings and are still $15,000 in dept for medical bills.
Well all the said and done thank you ALL SO MUCH for your prayers, without the Disboards and support I got and just feeling a little magic for the last 4 months I have been out of work has been great.
quasar4legs
DIS Veteran
- Joined
- Oct 9, 2008
Hi,
Good to hear from you and I am glad your recovery is going well enough for your to be able to return to work, I can relate to the desire for things to return to 'normal'.
I am very sorry to hear that you have been having such a difficult time financially and it must be hard having to ask your daughter to withdraw from her course.
Perhaps your daughter could pursue her dream at a later date when she is more financially independent.................I hope it works out for her.
Take care and I hope that every new day brings you one day closer to health.
Quasar
Good to hear from you and I am glad your recovery is going well enough for your to be able to return to work, I can relate to the desire for things to return to 'normal'.
I am very sorry to hear that you have been having such a difficult time financially and it must be hard having to ask your daughter to withdraw from her course.
Perhaps your daughter could pursue her dream at a later date when she is more financially independent.................I hope it works out for her.
Take care and I hope that every new day brings you one day closer to health.
Quasar
jerseygal
DIS Veteran
- Joined
- Jan 1, 2008
Wonderful that you are feeling better!!!!!!!!!
Very sorry to hear about your daughter! She sounds like an INCREDIBLY BRIGHT GIRL!!!!!!! BRIGHT PEOPLE MAKE THINGS HAPPEN!
I'M SURE THAT SOMEHOW SOMEWAY SHE WILL BE ABLE TO CONTINUE TO BECOME SUCCESSFUL! WOW, A PHARMACIST! THAT IS ABSOLUTELY AWESOME!
GOD BLESS YOU AND YOUR FAMILY AS YOU RECOVER FROM THIS SETBACK IN YOUR LIVES!
Very sorry to hear about your daughter! She sounds like an INCREDIBLY BRIGHT GIRL!!!!!!! BRIGHT PEOPLE MAKE THINGS HAPPEN!
I'M SURE THAT SOMEHOW SOMEWAY SHE WILL BE ABLE TO CONTINUE TO BECOME SUCCESSFUL! WOW, A PHARMACIST! THAT IS ABSOLUTELY AWESOME!
GOD BLESS YOU AND YOUR FAMILY AS YOU RECOVER FROM THIS SETBACK IN YOUR LIVES!
(((hugs))) from another melanoma survivor - 6 years so far. Your original post made my heart go up in my throat, that was me, 6 years ago. Lots of tears, panic attacks (the dermatologist told me the results over the phone, then told me I needed to contact a surgeon for the re-excision... 
) sleepless nights, and some good meds to calm me down. I, too, have a good chunk missing from the back of one calf. There's a divot in my back from the second one, and a few more scars from suspicious spots that were removed. They are my battle scars, as I am only 47, and I have a need to live at least another 10-15 years to see my beautiful daughters grow up and start their own families. They were 11 and 14 when I was first diagnosed.
I have learned to keep a folder with every paper in it that any doctor has given me about my diagnosis and treatment. It goes with me to every appointment. It really helps me be my own best advocate, as I can answer the doctor's questions, or just hand him the file and let him look things up. I've had 4 dermatologists involved so far, right now I am blessed to be a part of the Pigmented Lesion Clinic at Mass. General Hospital.
My thoughts and prayers are with you - feel free to PM me if you have any questions, or just want to conect with a fellow survivor. Take care, and I'm so happy you made your trip work!
) sleepless nights, and some good meds to calm me down. I, too, have a good chunk missing from the back of one calf. There's a divot in my back from the second one, and a few more scars from suspicious spots that were removed. They are my battle scars, as I am only 47, and I have a need to live at least another 10-15 years to see my beautiful daughters grow up and start their own families. They were 11 and 14 when I was first diagnosed.I have learned to keep a folder with every paper in it that any doctor has given me about my diagnosis and treatment. It goes with me to every appointment. It really helps me be my own best advocate, as I can answer the doctor's questions, or just hand him the file and let him look things up. I've had 4 dermatologists involved so far, right now I am blessed to be a part of the Pigmented Lesion Clinic at Mass. General Hospital.
My thoughts and prayers are with you - feel free to PM me if you have any questions, or just want to conect with a fellow survivor. Take care, and I'm so happy you made your trip work!
I want to thank everyone on the Disboards who have given me support. I finally returned to work full time on Oct 31. (my surgery was March 16)
I hope everyone had a wonderful Thanksgiving. I am celebrating every holiday to th fullest.
I am returning to Disney World in 19 days with my wonderful 19 yr old daughter and best friend. This time I hope to walk the parks with out assistance and a scooter.
to my new Dis friends Live every day to the fullest and spend every moment with your loved ones.
My new moto in life is to make one stanger smile everyday....
I hope everyone had a wonderful Thanksgiving. I am celebrating every holiday to th fullest.
I am returning to Disney World in 19 days with my wonderful 19 yr old daughter and best friend. This time I hope to walk the parks with out assistance and a scooter.
to my new Dis friends Live every day to the fullest and spend every moment with your loved ones.
My new moto in life is to make one stanger smile everyday....
How wonderful.snoopybabe
Mouseketeer
- Joined
- Aug 24, 2007
Wonderful news! 
Enjoy your trip. Your post brought a big smile God bless
Enjoy your trip. Your post brought a big smile God bless
Just wanted to touch base,
It has been 11 months since my first surgery and they found 2 new spots that they are scheduling me to have removed. Not sure if its good or bad these are on my upper body not lower leg as in the past so hopefully I will not have to spend months in bed as I did the last time.
I am hoping everything is healed and again I can travel to Disney in August this time to watch my 2 beautiful grand daughters dance at Disney.
I just wonder everyday how long I can keep going with this? I am 52 yrs old and still feel I have alot to do in this world.
Its tough somedays to stay positive.
It has been 11 months since my first surgery and they found 2 new spots that they are scheduling me to have removed. Not sure if its good or bad these are on my upper body not lower leg as in the past so hopefully I will not have to spend months in bed as I did the last time.
I am hoping everything is healed and again I can travel to Disney in August this time to watch my 2 beautiful grand daughters dance at Disney.
I just wonder everyday how long I can keep going with this? I am 52 yrs old and still feel I have alot to do in this world.
Its tough somedays to stay positive.
luvmarypoppins
<font color=darkorchid>I am debating whether to pu
- Joined
- Aug 23, 2003
So sorry that you have to go through surgery again. I always say - never give in and never give up!
I am sure it helps that you have your wdw trip in august to look forward to and those beautiful dgd too.
Keep fighting tough.
I always put it in the back of my mind too, but I just take it day by day.
wishing you all the best.
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