13 yr. old son newly diagnosed

jaredsmom
jaredsmom Member Posts: 5
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
We found out on July 1, 2005 that our son has stage 1A Hodgkins Lymphoma. I have been reading a lot of the messages here and am grateful I have found this site. I have noticed that the majority of chemo treatments have been ABVD. Jared's treatment is 2 courses of DBVE and then approximately 17 radiation treatments. Has anyone ever recieved DBVE? He is doing good, already lost his hair - which he thinks is pretty cool. We are starting his second course next week. I would love to hear from anyone who could offer some reassurance to us........ two sleepless parents.

Comments

  • stepet
    stepet Member Posts: 69
    #2
    So sorry to hear of your sons diagnosis. The good news is it was found early. I am a 38 year old who was also diagnosed with stage1a in December 2002. I only recieved radiation treatment for one full month, so I don't know about the chemo treatment. I just wanted you to be aware that radiation isn't always as easy as they make it sound. Where was his lump? Mine was in my neck and my radiation was concentrated in the neck and chest. If that is the primary location of the cancer the radiation to the "mantle" field can be very tough. If you have questions please post. Take Care and good luck to you and Jared.
  • jaredsmom
    jaredsmom Member Posts: 5
    #3
    stepet said:

    So sorry to hear of your sons diagnosis. The good news is it was found early. I am a 38 year old who was also diagnosed with stage1a in December 2002. I only recieved radiation treatment for one full month, so I don't know about the chemo treatment. I just wanted you to be aware that radiation isn't always as easy as they make it sound. Where was his lump? Mine was in my neck and my radiation was concentrated in the neck and chest. If that is the primary location of the cancer the radiation to the "mantle" field can be very tough. If you have questions please post. Take Care and good luck to you and Jared.

    Thank you for your message. His lump was in his neck, behind his ear. They also removed his adenoids, which were cancerous too. We haven't even begun radiation consultations yet, so really have no idea about whether they will do mantle radiation or not. I wonder why they treat this disease in so many different ways? How are you feeling now? Did you have to have blood work done while you were having your radiation? Look forward to hearing from you.
  • Heatherjb
    Heatherjb Member Posts: 27
    #4
    I am not sure what the E stands for in his treatment, but from working in the medical field, I can tell you that children with cancer are often treated with different treatments. There are a lot of reasons for this. You should probably ask his Pediatric Oncologist.
    Anyway, I was stage IIA Nodular Sclerosing and had 8 treatments of ABVD. I also had 20 radiation treatments. In July, I just had my two and a half year cancer free check. I was 29 when I was diagnosed. I know you are probably scared and worried. The good thing is that Hodgkins is curable. I will keep Jared in my prayers.
    Heather
  • stepet
    stepet Member Posts: 69
    #5
    jaredsmom said:

    Thank you for your message. His lump was in his neck, behind his ear. They also removed his adenoids, which were cancerous too. We haven't even begun radiation consultations yet, so really have no idea about whether they will do mantle radiation or not. I wonder why they treat this disease in so many different ways? How are you feeling now? Did you have to have blood work done while you were having your radiation? Look forward to hearing from you.

    Hi, I am doing well now. I had been recieving scans every three months after treatment, due to the fact that a scan showed "activity". My last Pet was in March and they saw "activity", which led to a Cat and it showed muscle and arthritis. I am always on pins and needles it seems wondering whether it is truely gone. I have yet to hear the words remission, or cured.(I know a few more years to go before that). To answer your question they didn't take blood during radiation, they just checked in every week to make sure you were holding up okay. I ended up getting dehydrated and needed IV. I hope Jared handles his treatment well, I have two sons 10 and 8 and don't know what I would do if they were to get sick. I would much rather it be me. Take Care Sandi
  • positive
    positive Member Posts: 75
    #6
    Hello Jareds mom, The positive side of this very traumatic experience is that Hodgkins is the most curable cancers, your sons prognosis is probably 95 to 100% cure. My father at age 71 was diagnosed with hodgkins IIA. nodes in neck and one small one in armpit. If it didn't spread to his neck he probably would of not had the radiation. He had 4 cycles of ABVD, which is 8 treatments. Then he had 17 radiation treatments to to the mantle field. From my dads experience the radiation was a breeze compared to the chemo. His side effects of the radiation were sore throat and loss of taste buds. Everything has recovered completely. The taste buds took about a good year to return to 100%. Ask the oncologist about Amifostine, it supposed help with the side effects of radiation. Your son is gonna get through this with flying colors. Someday you'll look back and it will be a very small part of his life. God Bless and keep us all posted. My dad had ABVD and it caused his hair to fall out and gave him lots of fatigue, but he has recovered nicely and all his hair is back better than ever.

    Lots of hugs and support

    Valerie NY
  • arica
    arica Member Posts: 12
    #7
    Hi I am also a mom who's daughter was diognosed with stage 4b hodgkins. She was 19.I sure know how you feel. Your son is going to great the power of youth , oh so great. MY daughter had It 2X I think because she was diagnosed so late she had ABVD the first time around and did fine. Then in remission for 5 mos. More chemo then came the bone marrow transplant to follow.She still did good. Now we wait and see. Her diease is in her chest ,neck, and also found small area in lung and liver which now no trace in liver or lung. Again she was diagnosed very late. Her symptoms were itching all over her body.The Dr. still say she is curable. So hang in there he'll do fine. I can tell you this much he'll do better than you and dad!! Take care !! SOON TO BE OVER!!

    Gina, ARICA'S MOM
  • soad00
    soad00 Member Posts: 6
    #8
    I was 19 when I was diagnosed and had to leave college for a year. I think I was a stage 2. I had radiation to the neck, chest, and stomach. I've been in remission since spring 2000. I had trouble regaining salivation for almost a year after, I also lost some hair on the lower back of my head, which began to grow back exactly the same way about two months after treatment. I had mild nausea and vomitting during stomach radiation... Now I am fine, but must take synthroid (thyoid hormone) for hypothroidism for life. It was rough for our family especially since my mother had just gotten over breast cancer a couple of years before I was diagnosed. We never thought two people in the same family could have cancer and so close together, but we both survived and are doing very well. I am now engaged, graduating from university and 9 weeks pregnant with my first child. We have our first ultrasound in March and will let you all know how that goes, we are quite anxious and excited!
  • soad00
    soad00 Member Posts: 6
    #9
    soad00 said:

    I was 19 when I was diagnosed and had to leave college for a year. I think I was a stage 2. I had radiation to the neck, chest, and stomach. I've been in remission since spring 2000. I had trouble regaining salivation for almost a year after, I also lost some hair on the lower back of my head, which began to grow back exactly the same way about two months after treatment. I had mild nausea and vomitting during stomach radiation... Now I am fine, but must take synthroid (thyoid hormone) for hypothroidism for life. It was rough for our family especially since my mother had just gotten over breast cancer a couple of years before I was diagnosed. We never thought two people in the same family could have cancer and so close together, but we both survived and are doing very well. I am now engaged, graduating from university and 9 weeks pregnant with my first child. We have our first ultrasound in March and will let you all know how that goes, we are quite anxious and excited!

    Arica, Interesting. I also felt ictching all over my body before I was diagnosed. It was so strong I remember having to take my shirt and everything off in a washroom in a mall and just wear my coat home. I also had a throbbing or aching in my neck whenever I drank alcohol. I found out I had HD like this; I went to a thyroid doctor for a routine check-up, my mother had hypothyroidism, which is genetic and they wanted to watch me until they put me on meds. I already had a visible lump in my neck at this point, although small. The doctor felt it and said NOTHING!!! Just come back in a few months and maybe we'll put you on meds then. A few months later a got a bad cold and went to my GP who noticed the lump and referred me for tests right away. I was lucky I got that cold and saw my GP... We never went back to the thyroid doctor again.
  • Unknown
    Unknown
    #10
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