Cancer Survivors Network - survivor of childhood cancer - Comments

Hi, how are you currently?

sanghlafuz — Fri, 10 Feb 2012 01:21:51 -0500

Hi, how are you currently? Did you recover? - low blood pressure | stress and blood pressure | high blood pressure remedies

Please contact me

my_littlehero — Mon, 05 Dec 2011 23:52:00 -0500

Hi my name is Rita , my son is Luca, he was dx with ewings in 2010
7 1/2 he's 9 now he had chemo, radio, and surgery .
Life has returned normal for him, but I live In fear , I always searched
Online for long term survivors of ewings, was not easy. I would find stories that were
Dated and no contact info. I would love
To hear from a long term survivor !

My dad is a survivor!!

Lopez — Thu, 20 Oct 2011 21:49:12 -0400

my dad is almost 50. He was born with a wilms tumor and had a kidney removed when he was 7 days old. He went through years of other chemo and radiation to ensure it didnt come back. He has lived his entire life with one kidney that has now grown to the size of 2, he is one of the oldest living cancer survivoris in our area.

medulloblastoma

shellbell81 — Sun, 16 Oct 2011 20:03:46 -0400

Hi Lori17

As a mother of a child with medulloblastoma, would you be happy to speak to me?

I need advice from someone who knows what im going through with my 6yr old son..

Shellbell81

medulloblastoma

shellbell81 — Sun, 16 Oct 2011 20:03:37 -0400

Hi Lori17

As a mother of a child with medulloblastoma, would you be happy to speak to me?

I need advice from someone who knows what im going through with my 6yr old son..

Shellbell81

Medulloblastoma

shellbell81 — Sun, 16 Oct 2011 20:00:59 -0400

Hi benwonderin

My 6yr old son has medulloblastoma.
Im desperate to speak to survivors of this terrible disease.

So many questions, just not enough answers!
Were you high risk? How did you cope with treatment and did you relapse?

I hope you will be happy to chat to me about this....survivor stories will keep me going.

Shellbell81.

Medulloblastoma

shellbell81 — Sun, 16 Oct 2011 19:51:48 -0400

Hi There (Sparky)

I write in hope that you still check for messages.

Im in need of some advice in regards of medulloblastoma.

I see it was a long time ago you were diagnosed. My 6yr old son was diagnosed May this year
and he is just under 2 weeks away from starting, what we call 'maintainance chemotherapy' here in the UK.

Im really just wondering if you mind chatting to me about your diagnosis, treatment, how you coped with it all, did you relapse and more importantly, were you a high risk category?

I have so many questions for everyone i can find whho has survived this terrible disease.
As much as my son is doing fantastic, and coped with everything so, so well, im still a nervous wreck. Im on edge all the time, convinced he is going to relapse, im driving myself mad! Is it a good sign that he has tolerated high dose chemo and radiotherapy twice a day?? Does this hopefuly mean he will beat it??

If you wouldnt mind getting back to me on your personal experience of all this, i would be so grateful.

Michelle.

I AM LOOKING FOR ANYONE WHO

mm91174 — Sun, 02 Oct 2011 15:48:22 -0400

I AM LOOKING FOR ANYONE WHO WAS TREATED FOR A.L.L FROM THE MID 70,S THROUGH THE LATE 80,S. WOULD LIKE TO DISCUSS ANY LATE EFFECTS. I AM NOW 37 YEARS OLD, WAS DIAGNOSED IN 76 AND WENT THROUGH APP. 12 YEARS OF CHEMO/RAD "3 RELAPSES" ENDING IN 1988. I WOULD JUST LIKE TO COMPARE NOTES AND SEE IF ANYONE WITH A SIMILAR HISTORY IS HAVING SIMILAR PROBLEMS. PLEASE CONTACT ME AT MM91174@YAHOO.COM

3 time survivor

mm91174 — Sun, 02 Oct 2011 15:45:34 -0400

my daughter had medulloblastoma

lori17 — Fri, 29 Jul 2011 17:10:46 -0400

when she was four. I will tell her about this website. She is now twenty-six years old

I am a Childhood Cancer Survivor

Godsgirl3 — Sat, 25 Jun 2011 14:06:22 -0400

I am 15 so I guess that wouldn't qualify me as an adult, but I was diagnosed with a brain tumor when I was three. I'm really glad I found this site. And I'm surprised that so many people have been effected by cancer.

survivor childhood ALL too

gc04 — Sat, 25 Jun 2011 00:17:40 -0400

I was diagnosed with ALL as well in the early 80's at age 4. I have the very similiar treatment and long term effects as to what you describe. I also had intensive Chemo, radiation to the brain, neck, and spine, as well as spinal taps...but did not have a BMT. I know there are follow-up centers at some of the major hospitals; but, I have found them to be very unaffective at monitoring anything behind physical health. Whenver I bring up issues related to emotions, cognitive function, etc., the information given to me is very standard - a brochure, pamphlet etc. I have found related books to be mostly uninformative as well. I have been very angry about this, so don't take my bitterness as hopelessness. I think there are therapists and care providers out there, it's just a matter of finding the right ones. If I find anything worthwhile, I will share the information with you!

Hello, I am a Childhood

aliciamp22 — Thu, 26 May 2011 17:37:46 -0400

Hello,
I am a Childhood Survivor of ALL Leukemia. I was diagnosed when i was 15years old, 2 weeks from my birthday. That is one birthday present i could have done without. I am 22 years old now and i am coming up on my 4th year cancer free in July. I am still looking for someone that has been through what i have and around the same age. no one else can understand what you have been through unless they have gone through it too.

childhood cancer survivor

hawktata63 — Mon, 23 May 2011 10:58:30 -0400

Hi,
I am a 48 year old survivor of Wilm's tumor. Was diagnosed at 3 yrs old. Does anyone have information on late effects of colbalt and chemo(vincrstine). I have had my appendix, and gall bladder taken out and had hip resurfacing surgery 3 years ago due to no cartildge in the hip. This is the same side (right) that I was treated on. THe hip extensors muscles are atrophied from from the radiation I think. I have had intestinal problems off and on. Scoliosis and other things. Just wondering if anyone has more information that I could get.

Me too

BMTBohoBabe — Thu, 21 Apr 2011 23:25:06 -0400

Hi Chae, I was diagnosed with AML in 2004. I would love to talk to a fellow survivor.

survivor of childhood cancer

crawfordc — Tue, 06 Feb 2001 21:08:01 -0500

I am a 28 year old survivor of childhood cancer. Iwas diagnosed with a brain tumor in February of '82. Is there anyone else like me out there? Any other adult survivors of childhood cancer? Please,if you're out there write to me.