CLL Support Association

New to Treatment

After 3 yrs on watch and wait my husband has been told that the time for treatment has arrived and we are due back at the hospital on 7th August and have been told to expect scans and further blood tests and that chemo will probably be started mainly tablet form but not all that way. We are in a daze at the moment and I especially would like to hear from someone who has recently started treatment and can tell us what to expect. My husband is now 74 and was hospitalised earlier this year with pneumonia, he was very ill and his bloods were showing signs of having had chemo already. As his wife of 48yrs I am finding it hard to cope with advancing symptoms especially the continual tiredness he seems to spend a lot of time asleep and I know he has no control over it

9 Replies

It would help to know which treatment is being considered, there are a few, all different... some are tablets, some are intravenous, some are both. Different drugs, antibodies, steroids etc....



I'm happy to share my experience if you are interested, however as Chris wrote, without knowing his planned treatment it might be pointless as they vary. I was diagnosed June 2012, started treatment July 2012 and had six cycles of FCR. I was 56 when diagnosed.

F = Fludarabine

C = Cyclophosphamide

R = Retuximab



Similarly I am happy to share my experiences but as both Chris and Rob noted without some idea of the treatment regime they may not be relevant in your case. I was diagnosed with CLL in Dec 2009 at the age of 54 and began chemo in Mar 2013 after it changed into something called Richter's Transformation. My treatment was initially CHOP-OR and after 2 cycles was changed to R-CHOP. I am now half way through cycle 3.



Thank you for the replies and I shall definately update you all as soon as we get more info in August.


I am 67 and just finished round 2 of FCR. Not fun but it appears to be working. I am now taking treatment to increase WBCs because the treatment has taken me from

a WBC count of almost 100,000 to 1,700 (normal being 4,500 to 10,000).

While the FCR treatments are rough, within a week after treatment I've been feeling good, in fact better than I have felt in years. Just hope to avoid problems because of the weak immune system.



I too am on FCR at the moment. I've just done my 3rd round. I started treatment in April due to a very large spleen mainly but I also had a lot of enlarged nodes and a WBC of 130. I was also getting very breathless, which was also put down to my spleen.

I would agree with mandn (above) it's not easy, and it takes me about 10 days to feel well again, but the difference it's made to me is amazing. My spleen is back to normal, my nodes have shrunk and I am not breatless. If fact it's very sad to say how excited I was to be able to hoover without having to stop and rest! I too am feeling better than I have done for a very long time.

In my mind, it's worth the sickness and feeling ill to feel as well as I do in between - and thats what keeps me going.

Take care



I would take a deep breath, organize your thoughts, and then ask for more information - a copy of your husband's last labs, exactly what treatments his doctor is considering, including trials that might be available, and what the doctor is seeing that makes him think that now is the time for treatment. How is your husband feeling - another consideration when looking at treatment? I am curious about your statement that his bloods were showing signs that he had already had treatment.

I know that there are other caregivers here who, hopefully can give you some support from the perspective of a caregiver. It is a very different experience than being the patient, but as difficult, if not more difficult.



When my husband was admitted to hospital as an emergency via A/E and was in resus I was asked when his last chemo was, when I told them he hadn't started they asked why he was neutrophenic , the following day the ward sister asked the same question and I again told her and said I didnt understand what it was her reply was that it was how the blood cells show after chemo has wiped them out, he had a lot of different treatments and was eventually given 2 units of blood


My husband came home 2 days ago; he was in the hospital for 5 1/2 days and got his first treatment of FCR after being on watch and wait for 2 1/2 years. I'm trying to avoid the term "caregiver" but I haven't come up with a usable alternative as our lives have been so suddenly transformed. I think "carers" (?) get through this doing as best we can; for me, it's asking many, many questions so I understand the rationale of what's being done, being ordered...but being in the hospital is so much about a loss of control over basic activities, etc. It was very hard being on the oncology floor, seeing the folks in end-stage while my husband is ambulatory, relatively active (less-so than a few months ago), and we tried to keep our sense of hope/awareness that we are at the beginning of this, and small-molecule treatments appear to be promising and (relatively) close to approval...


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