ABVD vs Stanford V for stage II Classical Hodgkins

westiej
westiej Member Posts: 3
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi all,
I'm a 44 year old new mom (beautiful 11 mo. old healthy boy), who's also newly diagnosed with Hodgkins Stage II with 1 mild B symptom... very slight sweating at night. I'm due to start treatment this next week but I'm having a terrible time deciding which treatment to go with and I'm terrified of the chemotherapy. I live in the Bay Area so I have many choices. A local, highly recommended private practice oncologist recommends 4 cycles (at least) ABVD plus low dose radiation (the "Gold Standard" I've been told). He modifies the Bleomycin in an effort to minimize lung damage. Stanford's Lymphoma Clinic would put me on their Stanford V protocol, 12 weeks followed by low dose radiation. I've heard the regimen is pretty grueling, as you go every week and take a lot of scary oral medications, but I like the idea of less toxicity to my lungs and heart (I have mild asthma). But does it work? The long term studies are not there yet. My head is spinning and I have no idea how to this decision!! Does anyone out there have any thoughts or experience with either?

thanks for listening!
westiej

Comments

  • PabloSaenz
    PabloSaenz Member Posts: 6
    #2
    Hi Westiej, I had HD stage III, and i'm from the bay area too, I did Stanford V follow by 12 rounds of radiation, the treatment was in 2004, now I feel just fine, I know you are a young woman I you are going to be well, if you need more information please don't hesitate to contact me, my prayers
    Pablo
  • westiej
    westiej Member Posts: 3
    #3
    PabloSaenz said:

    Hi Westiej, I had HD stage III, and i'm from the bay area too, I did Stanford V follow by 12 rounds of radiation, the treatment was in 2004, now I feel just fine, I know you are a young woman I you are going to be well, if you need more information please don't hesitate to contact me, my prayers
    Pablo

    Pablo,
    Thanks for your reply and kind words. Tell me, how was the chemo experience with the Stanford protocol? The only account I have to go on was a friend of a friend's weblog (HD Stage IIE). She had a very hard time with it... fevers, low blood counts, really feeling awful. She also relapsed a few months after radiation therapy but was subsequently treated with more radiation and has been in remission ever since. Did you struggle with deciding between ABVD and Stanford V? Also, how did you like the care at Stanford?

    So happy to hear that you are free and feeling fine 2 years later. That's very encouraging and just what I need to hear right now.

    thanks SO much!

    Jennifer
  • Racht
    Racht Member Posts: 38
    #4
    Hi Jennifer.
    First of all I am sorry you're faced with this illness and inevitably tough decisions with how to proceed. That is a harsh reality I know only too well. You obviously have many reasons to fight though, which you totally sound to be doing. Good for you!! I only finished treatments for hd iibx (x for "bulky") in sept of 2005. I endured 6 months of abvd (well almost) they did find the bleomicin was damaging my diseased lung so they eliminated that after about the 4th or 5th dose of chemo...I then had 20 days of radiation. I am 31 so I had youth on my side, but I won't lie -it was pretty tough. especially about halfway thru. (I'll spare you the detail!) If I had had more time and more money I would have researched every possible means of holistic or alternative therapies. I had neither. In fact I was unemployed just prior to finding out how sick I was. I was in some sense, at the mercy of the state in terms of the treatment I could be given. The disease was VERY agressive so I had no time to look into anything else but what I did. I had to trust God for the results. I did- and I still do. The longterm risks are many and I would be unrealistic to think I'm "out of the woods completely." I'm glad to tell you today I feel healthier than I can remember feeling in a LONG time. I'm told I LOOK healthier too. I have my first 3 mo. pet/ct next month. So far all that has been showing since ending treatment is scarring/inflammation from radiation. For that I am very grateful. I continue to recover emotionally and physically from all that took place over the last 14 mo or so...
    I will keep you in my prayers.
    Please feel free to contact me any time. I'd love to know what you decide to do and how it works out for you.
    Rachel
    ps- you can read my story on my personal webpg. username: racht, under the hd group.
  • westiej
    westiej Member Posts: 3
    #5
    Racht said:

    Hi Jennifer.
    First of all I am sorry you're faced with this illness and inevitably tough decisions with how to proceed. That is a harsh reality I know only too well. You obviously have many reasons to fight though, which you totally sound to be doing. Good for you!! I only finished treatments for hd iibx (x for "bulky") in sept of 2005. I endured 6 months of abvd (well almost) they did find the bleomicin was damaging my diseased lung so they eliminated that after about the 4th or 5th dose of chemo...I then had 20 days of radiation. I am 31 so I had youth on my side, but I won't lie -it was pretty tough. especially about halfway thru. (I'll spare you the detail!) If I had had more time and more money I would have researched every possible means of holistic or alternative therapies. I had neither. In fact I was unemployed just prior to finding out how sick I was. I was in some sense, at the mercy of the state in terms of the treatment I could be given. The disease was VERY agressive so I had no time to look into anything else but what I did. I had to trust God for the results. I did- and I still do. The longterm risks are many and I would be unrealistic to think I'm "out of the woods completely." I'm glad to tell you today I feel healthier than I can remember feeling in a LONG time. I'm told I LOOK healthier too. I have my first 3 mo. pet/ct next month. So far all that has been showing since ending treatment is scarring/inflammation from radiation. For that I am very grateful. I continue to recover emotionally and physically from all that took place over the last 14 mo or so...
    I will keep you in my prayers.
    Please feel free to contact me any time. I'd love to know what you decide to do and how it works out for you.
    Rachel
    ps- you can read my story on my personal webpg. username: racht, under the hd group.

    Rachel,
    I am moved by your faith. I think one must really need to rely on that to get through this sort of thing, huh? I know I will. I am also encouraged that, despite having some hard circumstances surrounding your illness and difficulty with the treatment, (like its going to be easy for ANYBODY!) you have beat it and are feeling good. Thank you so much for sharing your story. I will keep you in my prayers as well.

    Jen
  • Racht
    Racht Member Posts: 38
    #6
    westiej said:

    Rachel,
    I am moved by your faith. I think one must really need to rely on that to get through this sort of thing, huh? I know I will. I am also encouraged that, despite having some hard circumstances surrounding your illness and difficulty with the treatment, (like its going to be easy for ANYBODY!) you have beat it and are feeling good. Thank you so much for sharing your story. I will keep you in my prayers as well.

    Jen

    Thanks, Jen.
    I appreciate your kind words. I certainly would have made it- and would not be able to look toward the future with as much hope as I do now, were it not for the Lord. Even my faith comes secondary to his loving presence in my life...I love to tell that story of how he held me and kept me, how he still does. how he wants to be in that kind of relationship with everyone.
    Being a writer, its a little easier to tell it!

    Have you made any more progress or decisions about how to move forward? I'd love to keep in touch if you're open to it...
    Keep fighting :)
    Rachel
  • lhodnet
    lhodnet Member Posts: 62
    #7
    I am so sorry you are going through this - I was dx when my baby was 5 weeks old.

    I chose stanford V b/c I had stage II BX - (bulky) and didn't want 6 mos of chemo with abvd as opposed to 12 weeks w/stanford V

    I was tired beginning about week 4 or 5 and it progressively got worse, but i had a lot of help (my mom and hubby watched our daughter while I went through this) However, I was totally able to drive myself places and get around - I just had to know my limits on how long I could stay out and such.

    I have been cancer free for 1.5 years and just had my 2nd baby 2 weeks ago.

    feel free to send me a message on this site if you have more questions or need more info.

    Lisa
  • wildcard6
    wildcard6 Member Posts: 2
    #8
    lhodnet said:

    I am so sorry you are going through this - I was dx when my baby was 5 weeks old.

    I chose stanford V b/c I had stage II BX - (bulky) and didn't want 6 mos of chemo with abvd as opposed to 12 weeks w/stanford V

    I was tired beginning about week 4 or 5 and it progressively got worse, but i had a lot of help (my mom and hubby watched our daughter while I went through this) However, I was totally able to drive myself places and get around - I just had to know my limits on how long I could stay out and such.

    I have been cancer free for 1.5 years and just had my 2nd baby 2 weeks ago.

    feel free to send me a message on this site if you have more questions or need more info.

    Lisa

    Hi all,

    I noticed some people had questions about ABDV and Stanford V, so I thought I'd post this:

    I am a 42 year old M hear on the East Coast and was diagnosed with stage IIIB Hodgkin's in April 2004. The oncologist I had never mentioned anything about Stanford V but I think that was because there was no surgery or radiation as an option because by the time they found it, it had spread to both sides of my diaphragm and had invaded my spleen and the nodes over my stomach. Anyway, I did ABDV and he made me well aware of the lung damage from the Bleomycin.

    Suffice to say I was in the hospital this weekend with chest pains, and they think it might be related to the chemo.

    On the up side, I am cancer free since Feb. 2005, and I'm looking forward to summertime. Good luck with your treatment and I will be keeping good thoughts for you...
  • Heatherjb
    Heatherjb Member Posts: 27
    #9
    I was diagnosed with Hodgkins Stage IIA in June of 2002. I was never given an option to have the Stanford V treatment. I had 4 cycles of ABVD (8 treatments in all) and 26 radiation treatments.
    Even though I also suffer from Asthma, I never had any problems with the Bleomycin. I have been cancer free for 3 years and 4 months now (lungs still clear and no lung damage). Sounds like a tough choice, but having 2 weeks in between chemo treatment gave me a chance to recover (I got so sick from the chemo). Also, I didn't ever have to have any Neupogen shots or blood transfusions. I was 29 when I was diagnosed.
    You will be in my prayers.
    Heather
  • PabloSaenz
    PabloSaenz Member Posts: 6
    #10
    westiej said:

    Pablo,
    Thanks for your reply and kind words. Tell me, how was the chemo experience with the Stanford protocol? The only account I have to go on was a friend of a friend's weblog (HD Stage IIE). She had a very hard time with it... fevers, low blood counts, really feeling awful. She also relapsed a few months after radiation therapy but was subsequently treated with more radiation and has been in remission ever since. Did you struggle with deciding between ABVD and Stanford V? Also, how did you like the care at Stanford?

    So happy to hear that you are free and feeling fine 2 years later. That's very encouraging and just what I need to hear right now.

    thanks SO much!

    Jennifer

    Hi Jennifer
    Like I told you before I was fine with Stanford V, but I said that I had 12 sections of Radiation but were 20, during chemo I remember my Mom prepared to me extracto of some Fruits and Vegetables I don't know if this help me or not but I did not have very hard time with chemo, just little tired, my blood count was fine until the last shot whem was little low, but never did a transfusion, this week on monday I had CT, but I think every thing is gona be OK. And of course you will be Ok. too, by the way I remebered that I could not chose between Stanford V or ABVD the doctor put all my information to the computer and the computer decided that I was a good candidate for Stanford V, and I had to take it.
    My prayers for you
    Pablo

Discussion Boards