survivor of childhood cancer

tom_s said:

Hospital records
Hi Phil,
I saw your message and felt I had to reply. I had Leukaemia just over 11 years ago, when I was 9. At the beginning of August I sent a letter to my old doctor, in London (Maybe I should explain: I've lived for 14 years in the UK, and now live for the past 4 years in the Netherlands) asking for my hospital records. I was a bit dissappointed that for a country where health care is supposedly free that I still had to pay, but they have various rules, so the 300 or so pages were photocopied, sent to me here in NL for what, in comparison to what I've heard from others, was a fairly reasonable amount.
I must agree with you though, the most help I have had is by talking to other survivors.
Tom

Hi Tom
Nice to hear from you. I was glad when I found this site. I just wish that there were more of us using it. This could be a very valuable resource to all of us. As I said before there is strength in numbers. If we all made an ongoing contribution then mabe we could finally get the answers we are looking for and the proper follow up we deserve.
Phil

sparcky said:

Hi iam also a survivor of a pediatric brain tumor . I was diagnosed with medulla blastoma in 1966 at the Hospital for Sick Children in Toronto Canada. I belong to a group at sick kids called Brain child. You may want to check out there website. Its kind
of tricky to get into. Try www.sickkids.on.ca
then go to family services. This is primarily a parents group but many survivors attend . write me any time.

Hi my son is an 11 year survivor of medulloblastoma. Did you have radiation back then? He is having severe side affects from it and I would really like to know more info if you can.

hey,I had retinoblastoma in my right eye when i was 6 mo.s old> i lost my eye and was told i could develop any number of cancers throughout my life. i was given radiation treatments , and that was fairly new at the time. either or ,im 41 years old now and i have a beautiful son ,who has no cancers at all, and i thank GOD my family and friends for what i have! ALL i can say is never give up ,when your down,feel good about all you have known and all the people who have touched you in your life and never ever feel sorry for yourself ,because you are the best hope you have!!

survivior said:

Hi, it looks like there are a few us us, I am a survivor of a Wilm's tumor (childhood kidney cancer), do you have long term effects from the treatments? I do. I would like to hear back! Luann

What have been your long term effects?

jennifer2000 said:

hey that's practically me...I'm 29 and was diagnosed with ovarian cancer in 1984.

I also noticed that annedora mentioned carpal tunnel like symptoms being related to chemo...I can see that, I remember my arm being on fire with the IV and constantly complaining and swapping arms. I figured the Reynauds in my hands and feet was related to chemo, but you've made me think that my aching wrists and fingers isn't just from a job trapped in front of the computer.

PS. does anybody even check this string anymore or am I too late to join the party?

Hi Jennifer
To my knowledge this string is still checked, (I've just checked it :-) ). As for being too late to join the party, seeing as, like the rest of us, you have had the thrills and spills of having had cancer at a young age, why shouldn't you post a reply?
take care
Tom

I am 38 years old and have been in remission since 1977. I had Hodgkin's Disease that was diagnosed in stage 3B in 1974. It was treated with surgery (removal of spleen and lymph nodes), chemotherapy MOPP and radiation. I had 5400 rads to my neck, 5400 rads to my mantle and 5400 rads to my abdomen and 5400 rads to my pelvis (today that is an extreme amount of radiation but I was treated on experimental protocol due to my staging, etc.)

I still have complications with a compromised immune system due to spleenectomy and some other issues. About a year ago I began to be short of breath and found that the heart murmer I developed after treatments was really loud. My mitral valve and tricuspid valve are damaged due to radiation damage and I have a smaller left kidney. Due to other radiation and chemo complications the heart problem is inoperable.

I am married and have 2 daughters. Due to declining health I am no longer working but taking the time to enjoy our girls and spend time with hubby and two doggies.

Still there are great drugs to help it so I am optomistic as always. Life is good however and I never take a moment for granted.

I have been active in the Minnesota study for years and agree the Adult Survivor Book is a wonderful tool for any childhood survivor.

sparcky said:

Hi iam also a survivor of a pediatric brain tumor . I was diagnosed with medulla blastoma in 1966 at the Hospital for Sick Children in Toronto Canada. I belong to a group at sick kids called Brain child. You may want to check out there website. Its kind
of tricky to get into. Try www.sickkids.on.ca
then go to family services. This is primarily a parents group but many survivors attend . write me any time.

Hi. I just wanted to talk to someone and hear their story, instead of telling my own. I hope you respond. Thank you.
Kory

Korena said:

Hi. I just wanted to talk to someone and hear their story, instead of telling my own. I hope you respond. Thank you.
Kory

I see that you are interested in connecting with other childhood cancer survivors. I had Wilm's Tumor in 1972 when I was 2 years old, and I had mets to my l. lung when I was three.

I've had lots of late effects. I have actually found that the community of long term survivors who have connected through ACOR's long-term survivors list has been the most helpful to me. For the first time in my life there are people who understand late medical and psychosocial effects of childhood cancer.

If you are interested in talking with me, please e-mail me. If you're interested in the ACOR list, check it out:
http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=lt-survivors&A=1

sorcharose said:

Hello, I was diagnosed with ALL at the age of 3. I am now 24 and have been in remission since the age of 6 or 7. It doesn't seem like I am an 18 year survivor, but that's what I am told. I have acquired some long term disabilities, however, all things considered I'm doing well. At present, I have taken quite an interest in meeting other early childhood cancer survivors. There is a relieving quality in the knowledge that we are not alone / few in numbers and better still, we seem to be thriving. sorcharose

I am 19 and my 1s cabcer was diagnosed at the age of 17. It is a pedatric cancer called pnets. the tumor was removed and I went for intense radiation to the head and spine. I was in remission for 18 months up till this April 2003 when testing had found that the cancer was back and I have tumors up and down my spine. They are treating me with chemo twice a month. It's a very agressive treatment. Any one have advice on how to stay strong and make the treatment any easier? Would love to talk. You can e-mail me at vickimatthys@msn.com