My doctor recommended me that chemotherapy should be started because my number of hemoglobin went down less than 11.0 g/dl (it is international criterion for starting therapy) to 10.8 g/dl. However, I do not want to start therapy now. I want to ask a question to especially someone who has experience of therapy. How much number of hemoglobin and platelet when you started chemotherapy (or ibrutinib etc.).
Thank you.
Miee
Hi Miee I have been in the same situation as you. My platlets and HG at level required for the treatment talk. I felt fit and well and could see no reason to start treatment.
My bloods went up a bit just after that and they delayed treatment. However they dropped again suddenly and I experienced a haemolisis and ended up in hospital with AIHA.
Non of this was too bad and I recovered following treament for the AIHA; then started treatment.
I sought a second opinion because I wanted to go on a clinical trial and 2 were available locally.
I am on the FLAIR trial on Ibrutinib and rituximab and doing well so far.
It is scary when they tell you it is time for treatment and you realise you are not going to be one of the lucky ones who never needs it.
Maybe a second opinion will help you come to terms with your decision making process.
I hope this helps you.
Good luck keep us informed.
Regards
Ann
Hi Ann:
Thank you so much for valuable information of your experience.
It may be the time for starting treatment for me.
Miee
If my hemoglobin went 8 or below the dr wanted to give me a blood transfusion.
I don't have all my start numbers because I started in the hospital. After getting out, in November I started on imbruvica, and somewhere in December I started trying to write down notes of what the dr said, still not understanding all this stuff. In December after a couple weeks on imbruvica I had 54K platelets and 10.5 hemoglobin . I was on imbruvica because they said thei chemo fludarabine didn't work and they were too afraid to try rituximab on me.
I don't know if you are only supposed to look at those two numbers.
I'm still learning and ask my dr. for both my numbers and then ask what the normal range is supposed to be.
Here is an article with other blood numbers
Trending down below 10 for several months is the standard in the U.K.
Hi devonrr
Thank you for valuable information. I am going to think about treatment if my HG will go down 10 or less than 10.
Miee
Hi Miee,
It was only when my haemoglobin dropped below 10 for a few months, that they reckoned it was time for treatment. (Which is just what Hidden has just said). My platelets were OK and I had no troublesome enlarged lymph nodes. (ALC was over 500 thousand but that didn't prompt treatment in itself).
The normal range of Hb for women is lower than for men, so our gender could make a difference to decisions re starting treatment (if a low Hb is the main factor prompting treatment).
However, looking back, I wish I'd started treatment a bit earlier than I did. Because when I started (on Ibrutinib), my Hb dropped and took a long time to recover. That does sometimes happen, but not always.
I hope you and your doctors work out the best time for you to start treatment, Miee. There's often not a cut and dried answer to these things.
Best wishes,
Paula
P.S. Just looked up my platetets before starting treatment, and they were 232. They wobble around quite a bit but have never gone below 200.
Hi Paula
Thank you so much for valuable your experience. I am thinking about a start of treatment if my HG go down 10. More or less, I will be start treatment in near future.
Best wishes,
Miee
Hi Miee, you didn’t say what was happening with your WBC and, more importantly, your ALC counts and what the trends were. Cheers, Rob
Hi,
My blood counts just before I started FCR were
Hb : 9,4 trending down
lymphs : 50,000 trending up
platelets : 154,000
splenomegaly
80% infiltration of the bone marrow.
No obvious enlargement of lymph nodes.
From what I understand it was the increasing anaemia that really decided the start of treatment.
All best,
Chinchilla
Hi Chinchilla
Thank you very much for information of your experience. I feel anaemia when I play tennis. May be HG value 10. Soon in future---.
Miee
Miee, there are much more knowledgeable people on this website than me but ALC doubling time is also a big factor in deciding when to treat. WBC of 68K doesn’t seem enough to warrant starting treatment. Your docs will be looking at the overall picture.
My HG was at 6.1 and I required 2 units of blood transfusion before starting ibrutinib. Unfortunately I developed an adverse reaction which took 2 months to finally resolve requiring me to stop taking ibrutinib. Back on full strength ibrutinib and my HGB is now at 10.1 which is the highest it has been in 5 years.....ibrutinib is working for me....hope this upward trend continues and that my HG will someday be in the "normal" range 
Hi joycecanada
Thank you for your experience. If HG goes down to lower level, it will be difficult to recover even you take ibrutinib? Anyway, it looks to be better I will start therapy before my HG go down below 10. I hope that your HG will go up.
With best regards,
Miee
I wish you well. Cheers, Rob
Have you been tested for MDS? I suffered with chronic anemia until MDS was positive I started on weekly procrit injections until hemoglobin and hematocrit increased. Then every month with blood work to ck numbers. Now, haven’t had procrit injections for 3-4 months.
Marie
Hi Marie
Thank you for a reply. I am not sure, but maybe I did MDS test 2 years ago.
Miee
IWCLL 2018 criteria for treatment...
Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia.
Cut-off levels of Hb < 10 g/dl or platelet counts of < 100.000/µl are generally regarded as indication for treatment.
However, it should be pointed out that in some patients platelet counts of < 100.000/µl may remain stable over a long-period of time; this situation does not automatically require therapeutic intervention.
Of course we all start treatment for different reasons. When the need for treatment was mooted for me, it was because my lymphocytes, WBC and neutrophils dropped from being within the range they previously were since diagnosis, over a 10 year period. A bone marrow biopsy showed 96% infiltration. My Hb at that time went to 11.1 then dropped below that to 10.6 and back again. But it was the bone marrow issue that triggered treatment for me. I had 5 rounds of FCR and a 6th of just Rituximab. That all finished on 20 July last year. Currently my Hb is 10.4 and I needed blood transfusions to maintain it though it seems I am now holding my own and have not had a transfusion since January. But my lymphocytes are stuck at 0.5 so I am still vulnerable to viruses. My platelets are now 85. Neutrophils are 1.9. So treatment has not been brilliantly successful for me and, with FCR, it is worth keeping asking if you really need to go for the full 6 doses because the toxicity can be too much for the immune system to fully recover afterwards. Do investigate all your options and manage your treatment with as much knowledge as you can glean, especially from this very valuable website. All the best, Holly
Hi holly 2
Thank you very much for your experience. Your experience of FCR treatment tells very very important thing for me. I was going to do fludarabin mono therapy or FR for 2~3 rounds, because I was afraid adverse events such as bone marrow suppression. I am going to start therapy when my HG go down below 10. Really thank for important experience.
Miee
I'd like to look at this a different way, ignoring the numbers - I want from diagnosis to treatment in around 5 months, at which point I was pretty ignorant about the whole thing, and have no idea what 'the numbers' were.
First question: How do you feel? You say that you don't want to start treatment now, which sort of suggests that you feel OK... CLLCanada makes a good point regarding criteria and the fact that the 'numbers' can actually stay stable for a long time... so maybe you can afford to play a waiting game, so long as it's not dangerous for you.
Second question: Is your reluctance to undergo treatment down to fear? It's no doubt scary, but many of us have to face it sooner or later. If you are not feeling well, then maybe you should just bite the bullet - just make sure you have the best treatment available for your own, unique, version of CLL. There is a huge amount of advice on that here, and elsewhere.
Whatever you and your doctors decide, I hope it goes well for you.
Hi skarletnoir
Thank you for many suggestions.
Yes, my feeling OK except for skin itching (not so serious). My doctor is afraid that bone marrow suppression including marked drop of HG and platelet, when the chemotherapy is delayed. My HG and platelet number are not stable, although going down very very slowly.
With best regards,
Miee
OK - good - If you are really not keen to start treatment, then you can always seek a second opinion - but it does sound as if you'll have to face it sooner or later. In that case, you need to find out which treatments are available to you, and - crucially - which one is likely to be the most effective. CLL must be very tricky to treat, as there are so many variations in patients.
Best of luck for the future.
(BTW - itchy skin is pretty common - I had it, and still get it on and off, especially in cold weather.)
My Hemoglobin was at 8.8 when starting Calquence (acalabrutinib) 2x , 100 mg.. After 5 months I am at 11.5, increasing at rate of about 5% per month. Dr. insisted on bone marrow biopsy before starting treatment.
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