Remission or Relapsed CLL? please help!!!!

[tropicsurvivor]

I was treated two year ago with standard FR for first time.

After two years of good life, my CBC shows constantly for 11 months, an average

of 72-84 K of platelets, and White blood cells around 19 K, sometimes 16 K, 17 K.

Is this the first symptoms of relapsed CLL, or a remission, since I have kept same platelets, and increased white cells.

My Doctor said that after first treatment, the body will keep the white cells a little bit higher, since white cells are of poor quality.

Can somebody tell me something about this?

thank you and good and long life for everybody,

Tropic Survivor

[AussieNeil Administrator]

You need to look into the white blood cell differential report and check the lymphocyte count and track changes in this over time. A raised white blood cell count can be due to infections or allergies.

[Jm954 Administrator]

Did you start Ibrutinib as planned?

[tropicsurvivor in reply to Jm954]

Hi, and thank you for your interest and follow up.

According to Doctor committee, Ibunitrib does not apply to me, because I do not have 17 chromosome deletion, or something like that.

thank you and best regards,

Tropic survivor

[tropicsurvivor in reply to tropicsurvivor]

Hi again, my platelets have been stable for the last 8 to 10 months, around 72/84 K.

My doctor will continue monitoring.

My WBC around 15-19 K.

All other hemogram parameters are quite normal, in range, with except of neutrophils, which are low.

Thank you once again for your interest.

Best regards,

Tropic Survivor

[Hidden]

This is a good question and one I am not sure I have seen an answer too. After FC or FCR treatment what is "normal" for blood test results...regular old normal as in for everyone or a "new normal" like this and that might be off a little but that is normal for after treatment.

Scott

Not much liking the new normal after getting CLL

[Cllcanada Top Poster CURE Hero in reply to Hidden]

Depends on the depth of the first remission, if you are MRD negative, which is quite hard to achieve, then you revert to normal which can last for years... Complete clinical remission are not as deep, and are a new normal which is patient specific... partial remission, stable desease are new normals as well.. usually with ALC s in the 15-25K range... and again may remain for a few years...

It's very subjective actually, other than MRD

~chris

[tropicsurvivor]

Thank you for your answer, I completely agreed with your statement.

As per my own analysis and reading, after FCR or FR, we do have a new normal, and as long the WBC do not go so high in a dramatic way, and platelets keep and maintain certain level, and lymphatic glandules are not increasing in size, we can say, that we can survive for little while, and have some hope of avoiding to return to the chemotherapy purgatory.

I am surrounded by doctors, my brother is a surgeon, my father in law is a Urologist, and all of them, through their colleagues, have something to say, in order to help to overcome this difficult passage of my life.

It is possible to have a life with 40 K platelets, pregnant women sometimes go for surgery with only 40 K platelets.

As long as my new normal after treatment, have some sort of stability, there is nothing else to worry, until new and affordable therapies are coming on line.

Day of Ibutrinib are counted, there are already biosimilars available for a fraction of what cost this infamous medicine. (infamous because of price).

As per my doctor (hematologist oncologist) in the Cancer Institute, as long as the WBC do not go so high, beyond 25 K, and platelets keep stable, she is not going to treat me again.

In the case of some dramatic variation to my WBC, she will order a CT scan again, before any treatment.

Have hope my friends, we are all together in this fight !!!!!

Thank you all for your fantastic insights.

[Hoffy]

If you have to get more treatment make sure it is not FCR or BR.

Study dr furman , dr Kipps and others.

FCR only works well for certain people. Mutated with good genetics.

Be well ,

Hoffy.