Hi everyone. Thank you for supporting me. I am still in hospital and have been visited by my consultant. Had a discussion regarding chemo. He said that my counts were normal aftee round 1 so i could stop with the chemo now. I love that man. Discussed using ibtutinib should i need treatment again.
I will b staying in hospital until monday or tuesday to continue antibiotics and gcsf injections. That is not a problem x
Fabulous news lucyjack! So glad to hear this and it’s such a wonderful feeling to be heading home soon 😊
Onwards and upwards,
Newdawn
Hi Lucy interesting to see the different plans of different specialists. It might be worth discussing with your current doctor or another CLL specialist whether it really is best to just stop after 1 cycle.
There may of course be specific reasons for your case that I am not aware of but I know that for example Prof Peter Hillmen who is an International expect) strongly encourages people to complete a course of chemo if at all possible (I guess a bit like a course of antibiotics) because he believes (and there is data to support this) that is the best way of someone getting a really deep and long remission, and possibly even a cure.
As I say not trying to give medical advice here because each case is different. But perhaps something to ask about.
Very happy you have had a quick response to treatment, however.
Hi adrian. I have had 3 rounds of fcr. My counts were normal after round 1. I am delighted that no more damage can be done to the bone marrow so very happy with my consultants decision.
Ah I misread your post that you had only had one round! There is a risk benefit balance to all decisions, so as long as you realise the risk here is that you might not get as long a remission as you would otherwise get.... Also having read your story a bit more I now gather you had significant neutropenia so I suppose perhaps that factored into the story. Perhaps a good example of why when we talk generalities like "6 sessions of FCR is better because more people get a longer remission" it may well be true, but should not be construed as individual medical advice as your own doctor always knows your whole case and THEY are responsible for giving you medical direction. We do have to be careful always to realise that what a trial says, or what an individual may have experienced, does NOT apply to everyone. Hope you have a nice long remission Lucyjack! And if you aren't already under a CLL specialist do make sure you get input from one in the future (sorry I know those are perhaps the most overly used words on this forum but they really DO matter....)
Great news. Good luck with your recovery.
Ann
Thankyou ann. I am a happy bunny.
Great news Lucy! I made it through four rounds of FCR and then had to stop because it sent my counts into a downward spiral. I spent a week in the hospital getting 3 different types of transfusions. My doctor said that was a rare reaction and that I can never have FCR again. Thankfully the treatment did put me into remission so hopefully I will get a few years before having to think about another form of treatment.
I hope that your remission last a long time and you have a wonderful life...
Hi Lucy. I understand how pleased you must be at that news from your consultant. I received the same news from my consultant this morning after having completed 4 cycles of FCR. I had exactly the same thing happen to me after cycle 3... admitted to hospital with temp over 38 and neutrophils dropped to 0.1. I had lots of cultures taken but they never did figure out what the infection was. IV antibiotics eventually worked and I was discharged after a week. I recovered enough to start cycle 4 but felt horrid with it this time and was in bed for days. It took 2 weeks to start to feel better then ended up in a and e last weekend with platelets at 4. Only just got discharged last night. I have been diagnosed with itp and am on steroids. Saw consultant today and he feels to carry on with treatment would be detrimental to me. My lymph count is 0.6. I started with a wbc of 550 so I feel pleased my count has come down so well. I will have bmb and ct scan in a couple of months to see how well treatment has worked. Anyway sorry for the long winded reply but your post struck a cord as I understand how pleased you must be. Fingers crossed for a good remission for us both despite cutting out treatment short!!!
All the best
Helen xx
Aww well done helen! I know you will feel yhe same relief and pleasure in finishing fcr as i do. Im still in hospital at the moment but dont mind so much now - at least i dont have to face the chemo in just over a week and a half! That worried me so much, thinking yhat i wpuldnt have any 'feeling well' time before the next round. Really pleased for you. We r back to watch and wait now! Yay x
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