Protocol AHOD0031

joesanit
joesanit Member Posts: 1
Hi my son is 14 yrs old and was diagnosed with Hodgkins, he has finished 16 rounds of chemo four cycles. He was cleared after two cycles. we are now at the point where the doctor is deciding if he needs radiation. I would like to know if anyone had this protocol with out radiation and how they are doing, also he was in stage 3a, he had them in the neck , abdomin and his spleen. I would love for him to talk to another kid going thru the same thing. We live in staten Island New York

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  • drenna
    drenna Member Posts: 8
    Hi! My son was 17 in Nov 2005 when he was diagnosed. He did the Statford 5 and then I think it was 4 weeks of radiation. He was 3A, in the neck and chest. He finished his treatments in march of 2006! When he finished his chemo, he was clean, but our oncologist was treating a 19 yr old young man who did not plan on radiation, but ended up needing it. So together we made the decission to radiate. The radiation will made him tired and his throat was very sore. Once the radiation was over. He was better in a week! (aren't kids amazing!) Now he is back at school, doing his senior year, playing football, dating, working and all the other wonderful things that use to irritate me!
    I will show this to my son, and ask him if he will "chat" with you and your son. His sign on name would be Jeff3429. Best of luck to you and yours. Let me know if there is anything else I can...sort of...answer for you. Let me know how your son is doing. Lots of prayers to you! Drenna
    PS We are Iowa folks.
  • arya
    arya Member Posts: 1
    AHOD0031
    Hello Joesanit-

    My son is about to turn 13 and is precisely in the same position you son was. He is a 3A, with disease in neck, chest, abdomen and spleen. He has also finished 4 cycles of ABVE-PC chemo and was clear after 2. We are trying to decide about radiation. His mother is absolutely opposed to radiation, and wants him to have more chemo instead (2 rounds of ABVD). I would be very interested to know your experiences, and what you ended up doing.

    I hope your son is in good health and has put this behind him by now. We live in Maryland.

    thanks
  • hodgkoid2003
    hodgkoid2003 Member Posts: 94
    arya said:

    AHOD0031
    Hello Joesanit-

    My son is about to turn 13 and is precisely in the same position you son was. He is a 3A, with disease in neck, chest, abdomen and spleen. He has also finished 4 cycles of ABVE-PC chemo and was clear after 2. We are trying to decide about radiation. His mother is absolutely opposed to radiation, and wants him to have more chemo instead (2 rounds of ABVD). I would be very interested to know your experiences, and what you ended up doing.

    I hope your son is in good health and has put this behind him by now. We live in Maryland.

    thanks

    AHOD0031
    Though I did not undergo this protocol, I did face the same dilemma.

    First, I chose radiation (see my profile). But then when new disease occurred, I went through chemo. My radiation onc was adamant about me going through more rads. It is definitely a very important and personal decision to make based on the risks of side effects, not so much short term, but long term.

    I can tell you, that I've talked to a few radiation oncologists, including my own, who to this day will beleive that Hodgkin's can be cured by rads alone, and even with chemo, want to put that exclamation point on the end of that treatment with some rads.

    For some people, it definitely does or has made a difference in survival by getting the additional treatment of rads. I chose the extra cycles of chemo. The other factor to consider is that lower dosages of rads and better methods are used, reducing risks of late effects, but probably not eliminating them.

    I was 22 when I had to make that decision often wishing that I was younger so that my parents could make the decision for me, but then again, I definitely don't envy watching any parent having to watch their child go through cancer. I know how tough it is to actually go through the cancer, but not to watch a child go through it.

    I know this post is not necessarily an answer, but like I said, the decision will be totally personal.
  • ralphie322
    ralphie322 Member Posts: 20
    protocol
    i was 28 when i was diagnosed and this story is bringing tears to my eyes i had chemo 12 rounds then 35 treaments of radiation its been 7 yrs since. if i had to do pick radiation again i would and this advice is hard to say cause it wasnt easy but i am here to talk about it ...i will pray for your son.. he made it this far he is definetly a fighter.. but i am not a doctor ... can you tell your son he is now my new hero... thankyou
  • docbar
    docbar Member Posts: 2

    protocol
    i was 28 when i was diagnosed and this story is bringing tears to my eyes i had chemo 12 rounds then 35 treaments of radiation its been 7 yrs since. if i had to do pick radiation again i would and this advice is hard to say cause it wasnt easy but i am here to talk about it ...i will pray for your son.. he made it this far he is definetly a fighter.. but i am not a doctor ... can you tell your son he is now my new hero... thankyou

    protocol
    Hello,
    I found this site researching protocols. I am a pharmacist, not a cancer survivor. Reading your posts has me sitting here with tears streaming down my face. I work the overnight shift, and I check the chemo orders, as they have to be done by 2 pharmacists. I just wanted to let you all know that when we are doing your orders, we think of you. While I am entering orders, I send up little prayers for you. I have only seen a couple of my chemo patients in person, but I think of each and every one of them, often. and I pray for them and their families.
  • truckingalong
    truckingalong Member Posts: 445 Member
    docbar said:

    protocol
    Hello,
    I found this site researching protocols. I am a pharmacist, not a cancer survivor. Reading your posts has me sitting here with tears streaming down my face. I work the overnight shift, and I check the chemo orders, as they have to be done by 2 pharmacists. I just wanted to let you all know that when we are doing your orders, we think of you. While I am entering orders, I send up little prayers for you. I have only seen a couple of my chemo patients in person, but I think of each and every one of them, often. and I pray for them and their families.

    aww, thanks!
    Your caring thoughts mean so much to me. I am amazed because I did not realize pharmacists are human being and do care too! Thanks for expressing your kind thoughts.

    Liz
    HL 4B-8/10/2010, 1/2011 - in remission)