Anyone else on here a survivor of Retinoblastoma?

Kerri Lynn
Kerri Lynn Member Posts: 17
edited March 2014 in Childhood Cancers #1
I was just wondering if there is anyone else on this site that has/had retinoblastoma. I am a 15 year survivor of Retinoblastoma and would love to talk. :)

Comments

  • ChasityNicole
    ChasityNicole Member Posts: 5
    Hi Kerri,
    I am Chasity, and

    Hi Kerri,

    I am Chasity, and I am a 17 year survivor of retinoblastoma. If you'd like to e-mail me you can, my e-mail address is [email protected].
  • ChasityNicole
    ChasityNicole Member Posts: 5
    Hi Kerri,
    I am Chasity, and

    Hi Kerri,

    I am Chasity, and I am a 17 year survivor of retinoblastoma. If you'd like to e-mail me you can, my e-mail address is [email protected].
  • Kerri Lynn
    Kerri Lynn Member Posts: 17

    Hi Kerri,
    I am Chasity, and

    Hi Kerri,

    I am Chasity, and I am a 17 year survivor of retinoblastoma. If you'd like to e-mail me you can, my e-mail address is [email protected].

    Heyyy
    Wow, so i just got done reading your profile so-to-say, and everything you say is eaxactly like me. It's so cool to meet someone with the same situation as me. I have been not had any luck finding others with Retinoblastoma because it's such a rare childhood cancer. I am a 16 year Survivor of it so we're not to far off. I'd love to hear from you again and yes, I will e-mail you. My e-mail address as well is [email protected]. Talk to you soon!!! :)
  • ChasityNicole
    ChasityNicole Member Posts: 5

    Heyyy
    Wow, so i just got done reading your profile so-to-say, and everything you say is eaxactly like me. It's so cool to meet someone with the same situation as me. I have been not had any luck finding others with Retinoblastoma because it's such a rare childhood cancer. I am a 16 year Survivor of it so we're not to far off. I'd love to hear from you again and yes, I will e-mail you. My e-mail address as well is [email protected]. Talk to you soon!!! :)

    oh gosh
    sorry about the late [extremely] late reply, but i have just gotten back on the acs website. i lost the password to my yahoo account and didn't remember my password to log on. i'll be e-mailing you soon...like now, so be on the lookout =]
  • ChasityNicole
    ChasityNicole Member Posts: 5

    Heyyy
    Wow, so i just got done reading your profile so-to-say, and everything you say is eaxactly like me. It's so cool to meet someone with the same situation as me. I have been not had any luck finding others with Retinoblastoma because it's such a rare childhood cancer. I am a 16 year Survivor of it so we're not to far off. I'd love to hear from you again and yes, I will e-mail you. My e-mail address as well is [email protected]. Talk to you soon!!! :)

    oh gosh
    sorry about the late [extremely] late reply, but i have just gotten back on the acs website. i lost the password to my yahoo account and didn't remember my password to log on. i'll be e-mailing you soon...like now, so be on the lookout =]
  • ChasityNicole
    ChasityNicole Member Posts: 5

    oh gosh
    sorry about the late [extremely] late reply, but i have just gotten back on the acs website. i lost the password to my yahoo account and didn't remember my password to log on. i'll be e-mailing you soon...like now, so be on the lookout =]

    and obviously i have a
    and obviously i have a horrible problem with posting things twice.
  • silvana
    silvana Member Posts: 2
    hi Kerry
    I am a 30 y old girl survivor of cancer, i had bilateral retinoblastoma when i was born, had one enucleation when i started the treatment after a belate diagnosis when i was 1 y old, but now i am an adult and i am ok, checking every 2 years, no other symptoms since i was 4 y old.

    of my treatment: i had radiation theraphy (15 sessions) and quimo for 3 y, oncovin), almost died when had the last quimos to finish the treatment when had no cancer activity, but after those hard quimo i got fine until now, my life has been normal, i am a secretary and my vision is ok. use glasses but not exagerated, normal measure.

    But ...., in our lives has to be a " BUT ... "

    well, when i was 27 i had a baby, a son, he has the same bilateral retinob.

    any girl who has this disease, cromosoma level disease, when having a baby HAS TO MAKE HIM BE CHECKED JUST INTO THE 20 DAYS OF BORN, AND NECESSARY HAS TO START THE TREATMENT INMEDIATELY, it is hereditary (even some doctors says there is a small percent of kids who do not inherit the retinob.), but now quimo is not so agressive, quimo is selective now and we can handle the treatment, my son has received criotherapy to keep his eyes, but one has lost the vision but he is entire physically talking.

    just be sure please to make your kids be checked pretty soon and be sure they will have a better level of life.

    doctors say we survivors are exposed to get some other kind of cancer while growing up, we just have be strong enough to detect any kind of strange symptom of any other disease.
  • daniel0809
    daniel0809 Member Posts: 3
    dental problem after treatment

    I wanted to know if experience any dental  problems after your treatment.

    Our son is a survivor and has had some dental isues.

  • daniel0809
    daniel0809 Member Posts: 3

    Hi Kerri,
    I am Chasity, and

    Hi Kerri,

    I am Chasity, and I am a 17 year survivor of retinoblastoma. If you'd like to e-mail me you can, my e-mail address is [email protected].

    any dental; problems re retinoblastoma

    dental problems after treatment

  • stakerd
    stakerd Member Posts: 1

    Kerri Lynn,

     

    My name is Donna Staker and I am a survivor of 43 years.  I was 3 years old when they found out I had it.  I did lose my right eye as a result.  I have been completely healthy ever since.  Thankfully I never had to have chemotherapy or radiation.  I was checked very carefully after that.  I do have regular eye exams by an opthamologist.  I also have 3 boys ages 11, 13 and 17 who never developed the disease.

     

     

    Sincerely,

     

    Donna