Hello!
I just had my 3 monthly visit with my haemotologist. My lymphocytes have jumped from 10 to 27. My glands are feeling bigger ...especially under my armpits. Hemoglobin and platelets all still in normal range and I actually feel good. My haemotologist says he will confer with his colleagues and see me again in 1 month but that it looks like we are nearing treatment ... and that would be FCR. Any advice or thoughts would be appreciated ...
Given you are just approaching the threshold of 30, above which the doubling time begins being calculated and the fact that you are feeling good, with hemoglobin and platelets in the normal range, I would say that you are entering a phase of closer monitoring just because of your concerns about your armpit nodes/glands. If your lymphocyte doubling time remains below 6 months and your glands do start getting larger (and self assessment is notoriously unreliable), then yes you may need to start looking into treatment options, prior to which you should have a FISH test to ensure that FCR will actually work well for you.
Do you have your blood test results for LD or LDH? That can give a better indication of CLL activity than trying to assess whether our glands/nodes are any bigger (which can happen in response to infections too).
Neil
Thank you Neil always appreciate your advice. Forgive me but what is LDH? I've checked my latest results and don't see that reading anywhere?
LDH or Lactase DeHydrogenase should appear on your blood biochemistry test panel, along with other useful tests that look at how well your kidneys and liver are functioning, your blood glucose level, cholesterol and other interesting measurements of how healthy you are.
This Patient Power video explains it's relevance to CLL well: 'CLL expert Dr. Philip Thompson, of MD Anderson Cancer Center, answers a viewer question about lactate dehydrogenase (LDH). Dr. Thompson explains what LDH is, its function within a cancer cell, and what information your medical team can extract by measuring your LDH levels.' patientpower.info/video/wha...
My specialist always orders this, but yours may not do so.
Neil
He does test my liver and kidney function every 3 months too, but he did not mention anything about it this time so I assume it's all good. Thank you again for your help.
Thank you, Neil, I am slowly learning how to understand lab results. Very helpful post. Carole
Does your doctor always order LDH at each appointment? Also, what about beta2microglobulin? Dr. Thompson likes that test.
I have LDH done every blood test, currently monthly. B2M is done every few years.
Thank you. I am going to ask for the LDH test every three months.
Hiya, as Neil says, you'll be monitored more closely but could still be quite a way from treatment yet. However, when you are considering treatment options please make sure your CLL Specialist offers you a clinical trial. It might be worth starting those discussions sooner rather than later. If you need to travel please consider it as you have 11q- which often doesn't do as well with FCR as with the targeted treatments. You're also young and it would be better to avoid the potential damage to your marrow from FCR.
Best wishes
My first hematologist wanted to do FCR quickly. And was very negative on targeted therapies. In retrospect I think he was more in it for financial gain than my well-being. Many hematologist make a lot of money off of the infusion process of FCR . They don't make any money if I just write a prescription for imbruvica .
I got a second opinion at the CLL specialty center and they recommended targeted therapies.
I am now on Imbruvica plus Venetoclax on a clinical trial and it is going very well so far.
Also you can see a lot of good information on the CLL society web site .
Be well
3 years ago (ALC in the 20s) my doctor told me when it came time for Tx it would be FCR. A bit too definitive for me especially in the current times when so much new data is coming in from so many new therapies and I wasn't close to needing Tx by any standard measure.
I am in "the" group - 13q, mutated, & relatively young and healthy - for which the majority of doctors seem to feel prescribing FCR is much more positive than negative. But like Hoffy I was also a bit suspicious, but for the reason I was going to an MD Anderson affiliated hospital and MD Anderson were the "proud papas" of that treatment protocol. Over the next 2 years I was told twice that it would be 'this year' that would be the year I needed Tx and of course it would be FCR. Since I never had any of the symptoms that IWCLL have determined as the indications for starting Tx, I saw no reason to think it's time to think about starting Tx tho' I did think about and did act on ending my time with this doctor.
I still feel fine with only small nodes. My ALC is now close to 60. It usually has gone up in a stable manner, but did have a doubling in a 3 month span once like you Deb. However, 3 months after that it was back to an amt closer to the normal 'up 20%' I was used to seeing.
With your normal levels of Hgb & Plt and lack of B symptoms, I certainly wouldn't rush to treatment especially chemotherapy and even more so if you're not 13q, mutated. I would think it's time perhaps for closer monitoring and probably for 2nd opinions and consultations.... and as was said a time to look at available clinical trials that might make sense for you.
Sure wouldn't mind that IBR + V trial if I was near Tx and it was open for frontline. From what I read, I tend to believe it's combinations like that that'll eventually replace all forms of chemo & prove to bring MRD negativity to a majority of CLL patients... and perhaps even allow most, once reached, to stop treatment. Anyway that's what I'll keep hoping for (though I probably could use some extra help hoping when it comes to the insurance coverage part).
Best to you. Good luck
My haematologist also recommended FCR but that was when my ALC was a lot higher than yours (I would have thought you're nowhere near treatment time yet). I asked about IGHV mutation status, amongst other things, and was told that hadn't been checked and they don't do that (FCR doesn't work well for unmutated IGHV). The real answer I read into from that advice was that my haematologist just wanted to play safe and give me an easy option for her whether it was suitable or not. I took option 2 and got a referral to a CLL specialist and, after proper testing (gene sequencing and IGVH), got the advice that FCR would not be a good option for me. I also got the advice at the time that I did not need treatment yet.
My advice - get a referral to a better doctor!
Graham
I am going to get a second opinion from a CLL specialist. My glands are quite large which is why my haemotologist probably says I'm nearing treatment. I don't feel he is wrong at all and I do value his opinion but a second opinion wouldn't hurt especially if it's from a CLL specialist who is known to do what he can to get you on to the right clinical trials. I so value all of your advice !!!
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