42 replies to this topic

[mabdou2005]

Yes Pam i live around nile valley and my mother language is arabic  my town is Alexandria direct in mediterranean sea it is hot in summer max temprature is 35 c and low in winter is 10 c  about camels sorry i can't help you may be my the father of my grandfather had one but now the camels is found only in the tourist places for fun

M ABDO

[pamsouth]

At the risk of being somewhat redundant and dissecting this issue, I do think the question falls under this topic.   It is important for me to understand this, in making decisions regarding drug dosage or switching drugs and the effects of the dosage on my CBC counts and organs.

Actually it is a follow up question to Trey's response "End stage red blood cells and platelets have no nucleus, but their predecessors do, so TKI drugs can negatively affect production of the predecessors of all blood cell lines."

Having said all that, regardless of which TKI you are on, lets say you are CCYR with say a 1% to 6 % positive PCR.  Your CBC counts; RBC HGB, HCT, PLATELETS, ETC. run somewhat low, but not low enough to take like iron fusions/shots/pills and platelett or plasma transfusions, or for that mater antibiotic fluid for low white cells, etc.  The more powerful the dosage or the TKI, when your CBC etc, get so low or to a certain point, isn't it better to stay at CCYR then a PCRU?  Mind you I am not speaking for a newly diagnosed person, where the onc normally has you CBC go very low, then take a TKI break due to low count or side effects, then resume the TKI and your counts come back up, to where the onc is satisfied. (seems to me most onc want a PCRU, even if  CBC counts are extremely, low, and regulate them with pills, etc)) 

Also I might add that I am looking at people my age over 60 years, in that I know from taking care of the elderly, the dosage is more complex as elderly are only suppose to take child like doses, also depending on the health of that person.  I am certain I am not near as healthy at age 64 then I was at 30 years old.  Therefore I do believe the less pills and less dosage you can get away with is better. 

I am talking about where or what range of YOUR CBC counts and organs vs FISH AND PCR status, is safe?  Another words for me to up my dosage or change to what is considered a more powerful TKI (perhaps because of the standard dose among other chemicals)  I would only come back to the same situation.  At a certain dosage the TKI is going to have a deeper response and at a certain point have a negative effect on the levels of my CBC counts.  How deep of a response to you want to get from your TKI and FISH/PCR, to what point would you want to let your other cells get low or have a negative impact on your organs?  I would think no matter what TKI you would eventually come back to the same scenario?

Would I want to have low count and regulate with pills or even perhaps transfusions to get a PCRU and for how long, months, years?  The next question would be, if the answer is YES, get to PCRU at whatever the cost, then what is the longevity of one's life, or long term effects,  having low cbc, negative effects on the organs; liver and kidney, lungs, heart, functions, after several years? 

I mean I am looking at the long haul, say 10 years + on these TKI and having a PCRU but now you have the consequence of perhaps heart, kidney, liver, failures or damage, that is perhaps even irreversible at some point.  So in the end when is best?  I am weighing like on a scale, after 10 years what tips the scale to a better quality of longevity life, as I am on the short end of life at age 64, or even say someone 70 or 80 years old. 

I hope I was not to redundate trying to figure out how to best present and ask the questions.  It is hard for me to condense all these thoughts and details, and get them all in.  As some of you can say a lot in a small paragraph.

Another words, in my small world, or brain, analyzes, I don't think it would make any difference which TKI you were on, it would be the dosage that would count and what would you be swapping to get a negative PCR vs low rbc and hemoglobin?   See there I am still trying to rephrase the question redundantly, and hoping to understand your answer, to make a decision, outside just my scope of thinking. Need to stretch my angle at looking at this.

I appreciate any and all response, and thanks for being patient, I need all the help I can get!!  This whole thing causes me more stress then the disease, as once you make a choice. or certain things are set in motion, it is sometimes not easily undone.  Doctor do have a lot of power and pressure to change to something I feel strongly against.  Perhaps to change back could be difficult to reverse if, and changing doctors would not be an options for me until maybe next January.

PamSouth

[winespritzer]

Dear Trey,

Thank you so much for this clarifying data. When I began treatment, my onc had told me I should be in remission at 3 mos on Sprycel. However my recent PCR was  .386.   So yesterday I think my onc said I had reached  MMR but I guess he probably said almost an MMR!!!

And I doubt that I am in so called remission.

My cbc seems OK although the rbc is down.

Winespritzer