obinutuzumab trial, do i or dont i?

Just been for my 18 month post FCR check up and was very pleased to hear that yet again i have a perfect blood count and no evidence of any mass or lumps. Then surprisingly just as i'm about to get up the consultant says I would be an ideal patient to go on a new wing of the Galactic trial that he is involved in, just having obinutuzumab in order to prolong my remission.

Hes not pushing it and has said to go away and weigh it up for myself but i'm feeling very puzzled.

I don't get ill other than the odd case of manflu ( but i'm always brave) I live a 90% normal life and work full time, sometimes i get knackered before i think i should but I feel I'm in a far better place than i ever thought i would ever be. So why upset the apple cart?

I'm not stupid i know i wont stay in remission forever and this could prolong my remission but I sort of feel are you enjoying your remission if your being treated? Or am i turning my back on something that i will regret? I didn't cope very well with the Chemo and don't want to end up back in the state i was in.

I just dont know what to feel !

7 Replies

oldestnewest
  • Tough call...Consolidation therapy has been tried with rituxan and ofatumumab in CLL over the past few years and Dr. Hillmen is a expert in the field...

    Obviously an extended remission is the goal...

    ~chris

  • Hi it's how you feel right now. The future is an unknown for all of us. Go with your instinct. Good luck

  • How often would you have to have it? Would it impinge on your life too much?

    Things you need to know before deciding I think. How long have you got to think about it? Also for how long?

    So many questions to ask and get answered.

    Please ask all the questions first, maybe you already have and then decide.

    Good luck and best wishes.

    Sue

  • Ooh, a tough decision especially as you are feeling relatively well on the whole. Find out all you can and weigh it all up before you come to a decision. Part of me thinks 'don't rock the boat' and the other part of me thinks that it might make your future even better and safer. Only you, armed with as much evidence as possible, can make the call. Keep us informed. Peggy.

  • What a tough decision to make considering your remission has lasted 18 months and is looking good. I'd ask your specialist if he has any insight from your CLL genome markers that would suggest this is a good option for you. Also, acquaint yourself with the side effects and their frequency and ask how long you need to remain on the trial and how bad any side effects would need to be before you could withdraw from the trial.

    There's a fair amount already posted to our community about obinutuzumab:

    healthunlocked.com/search/o...

    Please keep us informed.

    Neil

  • What a tough call! How long would the maintenance period be and what would the dosing schedule be? I did very well with obinutuzumab as my treatment, but don't know if I would want to add it if I had done FCR and was experiencing a good remission. It's wonderful to have all of the new treatment options, but it also complicates things, in my opinion, for both doctors and patients. When is more better and when is it best to leave well enough alone? I agree with Sue about asking as many questions as you can. As well as obinutuzumab seems to work for many of us, one does have to remember that it is a relatively new drug. I'm sure there is more to learn about it when used alone as well as when it is combined with other treatments or used for maintenance. Let us know what you decide.

  • Whilst slightly excited at being initially asked to do the trial I'm now becoming increasingly apprehensive, its a 2 year trial and if it wasnt for me it would be 2 wasted years. Im in a better place than i hoped to be so maybe I should count my blessings and be content. I tend to be susceptible to the side effects of most drugs so its probably going to be a bumpy road if i do it. However i do have up to 6 months to see how things go before i decide.

You may also like...