Having hard time deciding what to do...

lhodnet
lhodnet Member Posts: 62
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I posted below re: Stanford V vs. ABVD, but all research that I have done is that Stanford V is still in clinical trials. My oncologist seems to think that this will be the best method of curing me but I am beginning to have some doubts as to the regimen if it is in clinical trials - does anyone have any advice on how to proceed? I am all of the sudden feeling lost and pressured into something that isn't really "approved"

TIA -

Comments

  • sherra
    sherra Member Posts: 41
    #2
    I just left you a message on your previous post-please take a minute to read it. If you need someone to talk to feel free to email me at this site
    Sherra
  • dpomroy
    dpomroy Member Posts: 135
    #3
    Can you express your concerns with this oncologist? Why is he recommending this over ABVD? Is your Hodgkins at a worse stage? Bring a strong advocate/friend with you to get some concrete answers. Make sure that this doc knows that you are very uneasy. Can you get a second opinion?
  • KyLibrarian
    KyLibrarian Member Posts: 10
    #4
    I was in this same situation last March. My oncologist told me to think about which one I wanted. I'm a librarian so I researched Stanford V, mostly through a search engine. The most recent info I found gave me the impression it had just gotten out of trials. Though my oncologist had stated that I had a better chance of keeping my fertility with Stanford V, and that this is why he was considering it over ABVD, my research suggested differently (I just turned 30 and would like to have another child). Anyway, when I came back to my next appointment and was still on the fence (despite my research, I had a 5-month-old baby and wanted to be finished quickly), he told me he had talked to all the other oncologists in his practice and they thought for someone my age, with Stage IIA disease, that a mixture of ABVD and radiation were the best bet--I remember him saying that ABVD had worked so well for so many, they felt most comfortable with this. I had been misdiagnosed for a long time, and I think their mentality was, "This poor girl has had a lot of missteps with this already, let's go with the 'tried and true.'" There is that higher rate of breast cancer with the mantle-field radiation, but I didn't get as many chemos as most of the people who respond here--I only got 8 treatments. The thinking was that sure, the radiation would put me at that increased risk, but I wasn't getting my lifetime limits on the ABVD drugs so overall my treatment was minimally toxic and, if I ever got another cancer, I had options left. And the radiation was VERY low-dose. It worked for me, and since I had a little one at home, I loved that I had treatments every other week and had a "good" week. I have been in complete remission for one year.

    I know this is a hard decision. Hopefully our different success stories with both will help--it looks like several here have done really well with Stanford V. Makes me wonder if my doc did the right thing, but since I am cancer-free I tend to believe they did. And you will have that same experience--either one will probably send you into remission and therefore will be the "right" choice.
  • bc99
    bc99 Member Posts: 15
    #5
    I would strongly suggest that you contact another hospital or cancer center to get a second opinion on your treatment options. I don't know how Stanford V compares to ABVD, but I do know that it's so important that you feel comfortable with your treatment decision. My mom, who is in her 50's and is 5 months into remission, was diagnosed at Stage IV and her oncologist suggested that she be treated with ABVD (and no radiation). We sought a second opinion at Dana Farber just to be sure that this was the best treatment option for her, and the oncologist there agreed with her local oncologist's recommendation. Getting a second opinion also helped to boost my mom's confidence when she began her treatment. Another doctor may be able to provide you with additional information about the pros and cons of your treatment options and this might help you make your decision. Your oncologist should be supportive if you decide to get a second opinion on treatment options and if he/she is not, you might want to consider finding another oncologist. If cost of a second opinion is an issue, you could also request that your oncologist consult with other oncologists about your treatment options.
  • positive
    positive Member Posts: 75
    #6
    I understand your fustration, but you are relying on people who are not oncologists. You have to have faith in your doctor and if you do not you should seek another. ABVD is the most widely used regimen and it does respond very well to Hodgkins that is why it is the chose for most oncologists. Get educated as much as possible about hodgkins, I did and it really makes a difference. It is not an easy road I will say, but it is tolerable. I've watched my 71 year old dad go through ABVD and the one thing that surely kicks in is fatigue. As far as nausea, the anti-nausea medicines today seem to work pretty well.
    Emotional and family support is a big factor also, between my sisters and I, were always around and when he has days that he is not up to par, we spend the day with him. He has been able to stay active and exercises.
    Good luck to you and I hope you feel comfortable with your decision. Hodgkins is a curable disease and either regimen should knock it out. Please let us know what you have decided to go with and we can continue to give you support via this website.

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