Recentlydiagnosed

Only four weeks ago I went for a routine blood test, and the next day was contacted by my GP ,to inform me my bloods were being sent to oxford for further testing...the probability being they thought it showed I had cll? On the Friday I was confirmed it was that, and I was at stage 4 needing treatment?

Wow what a shock, For the last year had felt increasingly tired, and normal coughs and colds taking longer to shake off, and more bruising than normal...

Had another appointment with Dr on Friday just gone and they feel I can wait until January, before starting treatment,

My dilemma is do I go on flair trial or normal route of fcr..

Anyone out there who is on the trial ? This is all new to me and although I have researched it as much as I can it's always better to get first hand experience and there seems to be lot of you out there.

My WBC had improved slightly but my Platelets had dropped.,

My spleen is enlarged but that is all , am due to have a ct scan in the next couple of weeks.

I am a young 57.

7 Replies

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  • Megallen

    Bit of a shock for you! We understand your concern as we have all gone through this stage!

    As far as the trial is concerned only you can decide. There are members here that have been involved in the flair trial who can give you details of their experience. What you must look at is that FCR is still the gold standard of treatment whilst Ibrutinib is still a relatively new drug and not chemotherapy. Both use retuximab as a monoclonal antibody to attack the leukaemia cells.

    Ibrutinib has had some very good results but normally you have to continue taking these tablets where FCR is normally over with the six sessions.

    From what I understand both have potential side effects which not everyone suffers from many go on with little or no side effects.

    It is a matter of having a full discussion with your consultant prior to deciding.

    I am sure those who have been on or are still on the flair trial will give you more advice.

    If you search FLAIR trial on this site you will see a number of posts about members experiences.

    Geoff

  • Thank you and yes the research I have found is that they are still unsure of the long term benefits, and you may still only get picked for the fcr arm of the trial and still have to be on trial for up to 7years?

  • Hi Megellen. You have found a good place to hang out here. Lots of support and advice from people who have experienced what you must be going through right now.

    I am currently on the Flair trial. I had my 3rd infusion of Rituximab last Tuesday. After 3 years on watch and wait, I came to the point a point where I needed treatment. I knew the time was right for me. The trial was offered and I joined it not knowing which arm of the trial I would get. I honestly didn't mind If it was FCR or RI. Both have side effects and both have positive sides to them. I ended up with RI which, so I'm told, is the less toxic of the two. If I'm not in remission after 6 months of treatment then I will stay on ibrutinib of up to 6 years.

    You have been thrown in at the deep end. Many us don't need treatment for a few years so there is time to gather information and have more time to learn about having CLL.

    Whatever you choose, I wish you well.

    Mudlark

  • Thank you and it is so difficult as you want the best ,but actually even though you decide to go on trial you don't automatically get it.

    Have you had any side effects?

  • Hi again. A few side effects but nothing that I haven't read about before hand. Each person reacts in a different way to treatment. I have found the Rituximab quite hard going.

  • Always remember, that if you choose to go on a trial, you may not be one of those getting the drug being trialed.

  • Dont worry too much, make sure you follow your doctor and do all of the tests that are available. Last December 21/14. I was tired, lymph nodes swelled up, no energy and lost 20 pounds. I went to doctor assuming i had mono, he took a blood test at my local hospital and told me to go to the regional hospital right away. My blood test was 244000 WBC,s. Almost every lymph node was swollen, and spleen very enlarged. Not knowing what I had or how bad it was. I went through Cat Scan, Bone Scan, Heart Scan, and Bone Marrow Biopsy all in 6 days. And not until then did they tell me what I had. CLL Stage 4 !!! Im 44 yrs old and was in denial. I stayed in the hospital from Jan2-7/15 and did my first FCR treatment. Had 5 more treatments 1st of every month for 6 months. I just went back 2 weeks ago, and my WBCs are at 7000, which is normal, the doc says that everything looks good and that the chemo will stay fighting the disease for 1-3 yrs. I feel fine and have no side effects and full of energy and take everyday with gratitude. I know everybodys genetics and body types are different but have faith and hang in there, and dont get discouraged and take one day at a time. There are thousands of people out there in our shoes fighting. Dont give up and best wishes to you and your family.

    William

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