From Japan. I am stage A of CLL, p13 deleted. CD20 positive (not so strong expression). My situation is watch and wait. In Japan, we have only 2000? CLL patients, so hematologist's experience to treat CLL patients is a little. My hematologist told me that let's try fludarabin (F) mono therapy as a first line therapy, when the time will come to need treatment. I know that recent standard treatment is fludarabin+cyclophosphamide+rituximab (FCR). Before I will discuss with my hematologist, I want to ask your opinions. Anyone have experience with only fludarabin mono therapy?
I want to ask another questions on RCR treatment. I have heard that rituxian(rituximub) may cause rapid and quite serious allergic response. therefore, I think that patients are treated in hospital under doctor's observation (not your home!) at the first round treatment of FCR. Also I have found posts in this site that first rituximab was infused 100 mg? in a first day and if no problem, next day 500 mg? was infused. Basically Rituximab infusion divide into twice ? In japan, rituximab infusion is performed once a day. Sometimes serious allergic reaction occurs.
I have heard that only fludarabin caused serious side effects such as fever (around 39~40C) at the first treatment. I guess that it need to be in the hospital under doctor's observation at the first time of treatment even fludarabin mono therapy.
I appreciate if you might post your experience.
Miee
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Miee
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My advice is to forget all about this and get on with your life. You are only stage A and you may never need treatment. If you do eventually need treatment, it could be many, many years away yet and your treatment options could be vastly different by then. While you mention that you are "p13 deleted. CD20 positive (not so strong expression)", you don't have a full report of your specific CLL biomarkers, and that can give you hope that you may have unknown markers that will result in a stable or very slowly progressing form of CLL.
I particularly like this quote from a recent paper by Mark Fuerst: "CLL: Integration of Chemoimmunotherapy and Novel Therapies into Treatment."In addition to clinical staging, a number of biomarkers predicting overall survival have been identified in CLL. The multiplicity of markers, limited information on their independent prognostic value, and a lack of understanding of how to interpret discordant markers are major barriers to their use in routine clinical practice."
At this stage, just monitor how your ALC changes over time and ask your haematologist to let you know if any changes are observed in your spleen or lymph nodes, as these should be checked in your appointments.
With regard to your specific questions about Rituximab, this CD20 monoclonal antibody has been around a long time and is about to go out of patent protection. There are second and third generation CD20 monoclonal antibodies available now and quite a few non-chemo treatments are becoming available.
I remember your suggestions and was really encouraged.
My WBC seemed to relatively quickly, and my hematologist just told me that if my WBC will be up to above 35000 in the blood investigation on next February , we may consider about the beginning of treatment. That's why I have posted. I hope that the progression of my CLL will be slow as Neil say.
Miee, A CLL specialist will ignore what your ALC does until it goes above 30,000. Given your WBC includes other white blood cells, including typically upwards of 8,000 neutrophils, your ALC has probably only just reached around the 30,000 mark. So only from now should your haematologist begin to monitor your ALC changes, not your WBC. The ALC related trigger for treatment is a doubling time of less than 6 months. So if your ALC has reached 60,000 or more by June 2015, only then it will be time to start considering treatment options.
Your ALC can jump around considerably too, as it is influenced by many factors besides CLL. A good CLL haematologist may not treat a patient even when their ALC has grown to 200,000 or even 300,000 or higher, provided the doubling rate is longer than a year. There's a well known saying among CLL experts "Treat the patient, not the numbers", in other words, if the patient is otherwise doing well, a high ALC is not a trigger for treatment.
You are stage A so all being well a long way from tratment. You will see that there is a lot of news about new trestments so the world is changing for us. I would not rush to work out what is best right now because hopefully by the time you need treatment (if you ever do) the current options may have been replaced. Currently, in the UK the gold standard is FCR unless you have some need for other things.
The only thing worth mentionng as you raise the question of Fludarabine is that if you have Fludarabine you you must have irradiated blood from then on IF you ever(for the rest of your life) have a blood transfusion for any reason.
Actually, as Neil suggests... The best thing right now is get on with life and enjoy it.
As I reply to Neil, my WBC seemed to relatively quickly (increased from 20000 to 26000 for 5 months. My hematologist just told me that if my WBC will go up to above 35000 in the blood investigation on next February , we may consider about the beginning of treatment. That's why I have posted. I really hope that progression of my CLL will go slow, and chemotherapy will be changed to mild therapy soon.
I think, from memory 20,000 (or 20 in UK) alone is not always justification for starting treatment. Others here might add more to that or correct me. Note, no medical training, just learning as I go.
I just checked my records for you, my treatment(FCR) was started in July 2012 and at that time I had the following symptoms:
1: WBC: 64.2 (64,200 in your numbers).
2: ALC or LYM: 58.4 (58,400 in your numbers).
3: Swollen nodes around neck area and other areas plus a significant mass under diaphragm which was not visible except on scan. Neck was noticeable to others.
As a suggestion of how effective FCR is.. after my first round of FCR WBC was 6.5 and ALC 0.9 and during second cycle my neck was back to normal.
Rob
PS: Better late than never ..... ハッピークリスマス (I hope that translation is OK!)
Thank you for a reply. I have heard such a story. Thanks to your comments, Neil's and Rob's comments, I have more understood CLL. I have possibly misunderstood what my hematologist told me. In Japan, we have small number of CLL patients (only 2000 patients), so there are a quite small number of CLL specialists even in Tokyo. I live in small town far away from Tokyo, so I can not see specialists. In Japan, I found only 2 blogs of CLL patients that described treatment records. So this site is only one that I can get many informations on CLL. In Japan, most hematologists have treated a small number of CLL patients (probably less than several patients). Therefore, we wish to get information in order to discuss with our hematologist to decide a schedule of treatment including dosage of drugs.
I am stage A, without prominent lymph nods, spleen slightly swollen, and without any symptoms.
Your ALC (Absolute Lymphocyte Count) is the only important white cell number to be watching. Be wary of any Oncologist who may push you into premature treatment because of WBC or ALC blood count numbers alone. People have tolerated very high white cell counts without need of treatment and without bad consequences.
Take the time you are in W&W to learn about CLL. You are smart to question the recommendation of Fludarabine as a monotherapy. This is not a good choice as I know of no Oncologist who is CLL knowledgeable that would recommend this therapy today. It is very difficult to object to the recommendation of an oncologist but as you observed there are not many cases of CLL in Japan so the best way to treat it and when to treat it may not be found in a general oncologist with little experience in CLL.
CT scanning is not needed in diagnosing CLL and is overused in many countries in connection with CLL. A very good place to begin learning about CLL is clltopics.org as this information covers many topics in non techinal terms.
Read and learn and continue to ask questions of this community who will be glad to help you as much as we can.
Thank you for important many information. OK, I will ask my hematologist why he proposed fludarabin mono therapy, and if need, I will search CLL specialists in Japan to ask second opinion. Thanks to everybody, now I have learnt that I do not need rush to prepare treatment.
You are missing a combination... FR, fludarabine and rituxan. It is commonly used first line in B.C. Canada, and it is preferred to FCR, due to less bone marrow toxicity, in some patients. This is the treatment I had in 2011, and it was very easy.
The rituxan (375 mg/m2) was infused over 4 hours the first time, then under 2 hours for the other rounds. Fludarbine was pills over 5 days... here is the protocol
Also, bendamustine/rituxan BR is quite widely used in Europe... it is a bit like FCR, with a different mechanism of action... In a population over 65 years old, BR compared to FCR very well, with less toxicity.
ONO pharmaceutical is joining with Gilead to market a Japanese second generation BTK inhibitor in CLL and this is something you should monitor over the next year...
Thank you very much for many information. I will ask my hematologist why he recommended Fludarabin mono therapy, not FR or FCR. As many people suggest, I may not need to rush preparing the treatments. Just I am going to learn on treatments.
First really sorry to hear you have CLL, but welcome to the HU community.
Apologies I’m not good at languages, so will have to respond here with my version of English.
Great to have a new member from Japan.
Whilst this forum tends to be English speakers it is very international in membership, so many thanks for bridging the language gap.
I’ve been wondering about Japanese members for a long time. Except for the language issue, could you say if there are any other reasons why we don’t get more members from Japan ? (I see you say there are no Japanese language Forums that specifically cover CLL).
Now down to the question of treatment:
Here in the UK there is certainly an issue that with the complexity of CLL (and all the new treatments) it is better to travel to one of the big city teaching hospitals to talk to the best experts (who get involved in research), despite the difficulties involved with the travel. Assume the same true in Japan, and I note your comments about the travel difficulty (If you can only travel once at some point, to help make the decision it might be helpful. I would try to learn as much as you can first).
Now I would enjoy “Watch and Wait” (i.e. Life before treatment) first, but when you are ready (and not before) are any trials of e.g. ONO-4059 available in Japan ?
This may seem a really odd thing to say but:
The x4 years I have had of “Watch and Wait” before CLL treatment (FCR) have probably been some of the best of my life (so I wouldn’t swap them). CLL forced me to stop / slow down and think about what was really important in life and enjoy it more. I have to thank all the other members here on HU for their good advice on how to cope with the CLL whilst doing that.
For the lymphocyte count you can go a long way before treatment. e.g. Have a look at my post:
So you can see I was at 282 (282,000 in the units I think you are using) before I started treatment, which was driven by my spleen size (8.5cm distended before treatment. 6cm is the start point for treatment here). The important feature is the effect of the lymphocyte count on your other blood counts. It would be interesting to see those, if you would like to post (Are any of them thought to be a problem?)
With so many new treatments coming online I would not rush into treatment until you have to (Think about the long term).
Please ask any questions on anything not making sense (and apologies for my poor English). Just keep asking.
P.S. (Anyone) I’m not good on p13 deletion: Can anyone explain the prognostics with that and the effect on treatment choices ?
Thank you for valuable information. As you suggest, I will search CLL specialists in Japan to ask on treatments. Also I ask my hematologist why he recommended fludarabin mono therapy.
I found that you recently started FCR treatment. It was very good that you got only a slight side effect of rituximub. I have heard that some patients became a difficulty of breathing by an allergic reaction caused by rituximub infusion. Your rituximub infusion was carried out twice (first day 100 mg, next day 600 mg). I thought that it was good method, if doctors can find whether the serious risk of allergic response may occur. Is this the reason in your case?
In first cycle of your treatment, were you in hospital? If so, how many days were you in hospital? I know only 2 cases of treatment in Japan (I found 2 blogs of CLL patients who treated). One of them was in hospital for a month because every day he had fever around 39C. Another person was in hospital about 1~2 weeks. Therefore, I believed that everyone was in hospital for 1~2 weeks at first cycle of treatment under continuous doctor's observation.
I guess that it is difficult for Japanese CLL patients to join to this community because of language problem. Many people could understand English article than me, but most people can not 'write'. I am scientist (molecular biology), so I have been written scientific paper in English, although it is very poor English. Another reason is: perhaps----???
Anyway, Thank you very much. I hope that your treatment will be successful.
I have only heard to two people who are allergic to rituxan, in 16 years, actually one member on this list had an allergic reaction in the 4 th round... so you can't assume it happens at the start.
Usually, FCR is given at a day clinic and they sent you home at night, but
there are situations with very poor kidney function and high lymphocyte counts (250 K plus) were overnight stay in the hospital is preferred, but it is usually only a day... Sometimes they drop the rituxan from the first round and treat only with the FC... until the counts come down...
I have had 12 rounds of treatment including rituxan, went to the hospital on the bus, had the infusion for 2-3 hours, ate lunch, then often walked back home 4-5 kms... I felt great....
Most people have no difficulty with FCR, the rituxan is infused and
the fludarabine and cyclophosphamide are pills you take over the next few days at home.
In the U.S., FCR is all done by infusion... but out side the U.S. it is a mixture of infusion and pills...
Don't worry about it... by the time you need treatment quite likely they will be a new 'pill' type treatment...
Surprising, and I felt easy now. It is very important information for me. Also surprised that you walked back to home 4~5 km after treatment, because my knowledge obtained from Japanese CLLer's blogs who did treatment (we have only 3 blogs) was that rituxan was risky. Now I am OK.
My Rituximab was split with just a small trial dose on the first day, because my lymphocyte count at 282K was high.
Both days of the Rituximab infusion were spent in Hospital but went home at end of each day and felt great after both of those (much better than I have for some while after easy day at work). The sickness I had only came later on mornings of days 3,4,5,6,7 and was probably my fault for not getting the sickness meds right to start with because I though I was ok (Will try to do better for round 2)
The "F" and "C" components are taken on days 1,2,3,4,5 of each round of treatement, each round 28 days apart if I manage to keep to the program. I do wonder how long the FCR components stay in your system (thinking about the sickness and other effects)
Please don't worry about thinking you can't write good English - it is a funny language, illogical at times, and continually evolving, so if you can find any more patients please encourage them to post.
Molecular biology sounds a great job.
Thank you for posting, and please keep us updated on how you get on.
Thank you very much for your version of treatment. Thanks to you and other friends, I could got a lot of knowledge and encouraged. Really thank you so much.
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