My last laboratory tests

[lilica955]

Hi everyone,

Please, comments regarding the attached photo:

I wish to continu My doc.suggests starting treatment with FC.

Thanks a lot for your reply,

Lilica

[Lola69]

I think your cholesterol is high

[lilica955 in reply to Lola69]

Thank you Lola

Yes,it is,and I'll start the medication with Crestor (rosuvastatine).

[Lola69 in reply to lilica955]

Just a tiny bit high. You will be ok

[lankisterguy Volunteer]

Hi Lilica,

Your two postings don't provide much information for us to comment, and they are unlocked (open to be viewed by anyone by Google search).

9 months ago you asked about Ibrutinib/Imbruvica and it is unclear whether you have been on Ibrutinib/Imbruvica and what experience you have had so far.

We don't have any other information about your blood test trends and history if you have been in treatment.

We also don't know why your doctor is suggesting using FC chemo now after you had it 8 years ago.

You should probably seek a 2nd opinion from a CLL expert doctor rather than asking us to provide medical advice to you.

I suspect you are not in the USA or UK, so what country are you writing from, since that might affect some of your suggestions.

Len

[AussieNeil Administrator]

Hi Lilica,

I've taken the liberty of combining your two posts, deleting the one with no replies. You have wisely removed identifying information from your results, but if you wish, you can make your post private to just this community. Just select the "More v" at the bottom right of your post, then "Edit", then change your post so "Only community members" can see your post.

I presume you wish to remain in watch and wait and are questioning the need to start treatment for your CLL? Earlier, you mentioned starting on Ibrutinib soon. Is that still the case? You've had FC before, but after a long remission, you may do well on FCR, but if you can access Ibrutinib, it is arguably a better choice. Your blood counts CLL wise, seem okay, but perhaps you have very large nodes or your lymphocyte count is growing rapidly, or you have other concerning symptoms? Do ask your specialist WHY you need treatment right now.

If you share your country here and in your profile, you'll get more relevant answers.

Neil

[lilica955]

Hi Neil,

Thank you very much for your reply and because you arranged as my post is right!

A few months ago ,I belive aprox.9,as my WBC approached 100k ,I had to start treatment with ibrutinib,but their number dropped to 80k for the next six months,and we decided to stay in W&W.Now,with the actual values ,we have resumed the discussion about the treatment ,and,because 8 years ago ,with FC worked well,the same combination was suggested. I would like to know if someone else has gone through the same situation. And,yes,I have other concerning symptoms,like fatigue,enlarged spline, ....

I specifed in my profile that I am from Romania.

Thank you again for your prompt reply.

Lilica

[lankisterguy Volunteer]

Hi lilica,

Your post is not locked, if you don't understand how to do it, please ask an admin like AussieNeil to do it for you.

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From your description it sounds like your doctor is using WBC of 100k as a need for treatment, that does not follow the International Guidelines iWCLL2018 . Please send this link to your doctor and suggest that he review paragraph 4.1: bloodjournal.org/content/bl...

The last two sentences say: "Also, patients with CLL may present with a markedly elevated leukocyte count; however, leukostasis rarely occurs in patients with CLL. Therefore, the absolute lymphocyte count should not be used as the sole indicator for treatment.

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And here is a video of two CLL experts talking about what drugs they use for treatment and that they would NOT use Chemo like FC to treat a second time.

patientpower.info/video/ash...

Len

[lilica955 in reply to lankisterguy]

Thank you Len,for all your information and your comments !

I'll talk to my doctor.

Lilica

[MsLockYourPosts Passed Volunteer]

It seems unusual that your doctor would start you on Imbruvica and then discontinue it, especially since your WBC, and therefore, presumably your lymphocyte count, were not near normal. Usually once on Imbruvica you stay on it until it stops working for you.

At the same time, unless there were issues not mentioned here - Lymphocytes doubling once over 30,000 or greatly enlarged spleen or nodes, for example, it doesn't appear that you fell under the guidelines for treatment. We don't know why the decision for your initial FC treatment was made, but I would be asking a lot of questions about the need for treatment now, and why FC would be repeated. Also, if you go that route, why rituxamab (FCR) would not be a better choice.

CLL has taught a lot of us to ask a lot of questions and to insist on answers that follow the guidelines, or if they don't, why.

[lilica955 in reply to MsLockYourPosts]

Thank you for your reply! Yes,it is right,I have a lot of questions for the next January appointment with my Doctor.

Regards,

Lilica

[lilica955]

Hi Olga,

Unfortunately,that is the truth.We hope soon will be fine for you ,too.

Best wishes,

Lilica