Hello everyone. I have been reading posts daily since joining and find the community a good resource. Thank you.
I have been on W/W since September 2012 and have remained stable since then. However, last February I had bowel, sacrum and sciatic nerve pain. My GP did several tests but they all came back with good results.
I contacted my consultant and he arranged a CT scan and I expected those results at my next appointment on 28 April 2014. The results were not available at that appointment but my blood test results that day showed that I had become neutropenic with neutrophils at 0.63. A bone marrow biopsy was arranged and an appointment for 27 May 2014 for both the CT and Bone marrow test results.
On the 27th May, I was told that the test showed that everything was the same as two years ago but I remained neutropenic. I was prescribed 10 nightly injections of G-CSF and told to come back in 8 weeks. During that time the hip, bowel and nerve discomfort went.
I had an appointment yesterday and my neutrophils were still low. I have been prescribed another 8, G-CSF twice weekly and was told that if these didn't work then my next step would be FCR.
I have remained stable for two years and feel that FCR is an extreme step to take when other options may be available to correct my neutrophils.
Thanks for including more in your profile so those that wish to reply have more background information to improve the value of their reply. In a nutshell, the quandary you are facing is whether it is better to clear out our bone marrow with FCR or artificially push the remaining non infiltrated bone marrow to generate more neutrophils. I found myself in a similar situation to you at about the same age. My neutrophils dived to 0.4 in a matter of weeks, leading to my CLL/SLL diagnosis. I was constantly getting infections and never getting on top of them. I resigned from work and took other measures to limit my risk of exposure and that has helped me regain much of my quality of life. While you've had the nerve pain problem that has thankfully resolved OK, you don't mention any other health impacts from your lowered immunity. You also note that you are otherwise stable (CT and Bone marrow test results the same as 2 years ago). Also 13q is seen as a favourable prognostic indicator associated with a long time from diagnosis to treatment. I expect that you are rightly concerned about the likely short and long term impact of FCR on your neutropenia, particularly if you read zevkalman's post: healthunlocked.com/cllsuppo...
Obviously I can't offer you medical advice, but here are a few questions to ponder:
Do you know what your immunoglobulin levels (IgA, IgG and IgM) are doing?
What other CLL symptoms do you have that would be improved by treatment?
Are you up to date with your (non-live) vaccinations?
Have you sought a second opinion, in particular, whether you could join the Ibrutinib trial in the UK?
Presumably you are working. If so:
- how is your CLL affecting your work performance? (Fatigue and difficulty concentrating affected me)
- what level of exposure to infection risks is unavoidable in your job?
- how much leave and other support is available to keep you in your occupation?
- is early retirement for health reasons an option worth exploring?
I haven't had chemotherapy treatment (which for me would also be FCR as that's all that is currently available in Australia for first line treatment), nor G-CSF, but had I continued to work if that were possible, that would likely be supported by IGIV and G-CSF.
Vigorous exercise may boost your neutrophils at least temporarily; I've noticed I sometimes get a better result if I have a strong headwind when riding to a blood test
Hope this helps,
Neil
Thank you for your reply, Neil. Generally I have been in good health and, since being diagnosed, I have avoided a risk of infection wherever possible. For example, by hand washing more often and avoiding people who are suffering with colds, flu and anything else contagious. Fortunately, I am not working at the moment so that also rules out further risks of contracting an infection.
I wasn't given my blood test results last monday but in the past I have been and informed that they are all good and 'nothing to worry about'. (I was once told that I would probably never need treatment). Other than low neutrophils, I have no other CLL related symptoms that need treatment.
I was also asked to have a blood test on Monday ruling to establish my exposure status for a range of viral infections: Hep A, Hep C, shingles virus, CMV and HIV virus. This was something that should have happened with diagnosis, but somehow I seemed to have 'slipped through the net', although I'm thinking that having this information is really necessary when considering treatment for progressive CLL (which I'm not convinced that I have). I have had the Flu injection for the past two years.
Thanks for the Links, I will have a look through them.
Mudlark, given you have no other symptoms other than the low neutrophils, you would probably benefit from having a discussion with your specialist as to why FCR is now recommended and perhaps seeking a second opinion to help with your decision.
I track my blood test results having had a blood test dismissed as 'nothing to worry about' that actually showed neutropenia about two and a half years before the cause was investigated which lead to my CLL/SLL diagnosis...
If you've had any of these viruses previously that you are being tested for, then they may reactivate when you have low immunity, either from the CLL or treatment. Hence it will be useful for your specialist to know what risks you face so you can be monitored more closely or perhaps be given an prophylactic antiviral drug. From personal experience I can state that CMV is particularly nasty when you have CLL. It can take a long time to get over and it can also further suppress your immune system. It's pretty common, with about 80% of 80+ year olds having antibodies for it, showing that they've been previously exposed.
Hi Mudlark I was also physically fit and had no night sweats and fatique I have just started FCR treatment albeit like yourself, reluctantly! Others here will know of my increased anxiety as my WBC got higher whilst my other numbers like red blood count etc were reducing My bone marrow was also up to 80% infiltration going into FCR and my neutrophils dropped over 6 weeks from 5 to 0.5 and finally to 0.2. After round 1 FCR started my neutrophils promptly dropped to Zero and I spent 4 nights in hospital after getting a neutropenic sepsis of some description. I had 6 shots of G-CSF which pushed my neutrophil count up to 7. its a difficult decision hanging on for a trial, The longer you hang on, the more chance you have of having a problem if you do have to have chemo like I have had. I fully understand your reasoning as I was in the same boat and would guess you and your CLL specialist are trying to hold out for. I really hope you can, I know a trial opened in Leeds ( I think) for ibrutinib this month, but I think there is some lag between the trial opening and the trial starting. all the best Dave to you and all here. I start round 2 next week!!
Thank you for both your replies, they have helped me a great deal. The more I live with and learn about CLL, the more complex it seems to become.
I will definitely sit down and talk to my consultant and explore what path would be best for me; getting an alternative point of view is something I will consider too. Hopefully, the
G-CSF will improve my neutrophil count this time around. I will let you know how I get on in 4 weeks.
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Treatment starts tomorrow.
A hellish 2 months. Very confused about MRD measurements.
experience CLL Ibrutinib Colitis
First day on IBRUTINIB
