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Various questions, leukocytes, Vit D, creatinine, supplements ..

Hello, I recently had my visit to the doctor for the 9 months I have a series of doubts, first of all to say that my bcr-abl results have been lost or destroyed, apparently probably due to the heat .. I have had to go back to do the tests today, after 15 days of tension waiting, now I have to wait another month, another 15 days for the new test to arrive (if it does not spoil again) and another 15 days because my doctor is going on vacation, I find it a bit negligent, even more so considering that my results in months 3 and 6 were suboptimal and in the hypothetical case that I had to change tki, this would take place a month and a half later than it would have been if Things would have been done well, I don't know if something similar has happened to someone.

As for the rest of routine tests, I have noticed that my leukocytes have increased from 5000 to 8000 in 3 months, an increase in leukocytes also means an increase in bcr-abl? or has nothing to do with it? What else could be due to such an increase?

Creatinine has given me high, it crossed my mind that perhaps it could be because I have drunk alcohol from time to time these last 3 months, however in my analyzes of 3 months ago my creatinine was also just as high, and for that So I had not tasted a drop of alcohol for more than 6 months, so therefore that does not seem to be the cause, so why is the increase in creatinine due and what advice do you have to control it?

Regarding Vitamin D, my figures are 67, which seems to me to be optimal figures, my doctor has told me to stop taking it because if it continues to rise it can be toxic to my body, so my question is, to maintain this optimal level of Vit D should I stop taking it since I have reached the correct level and do not need to take more, or should I continue taking the same amount that I am taking (5000 iu d3, 50mcg k2) to stay at these optimal vit D figures?

I also told him that I take other supplements, curcumin, Vit C, selenium and Vit D, in this regard he has told me to stop taking everything, to limit myself to a balanced diet and I do not need supplements, because they can interact and that I do not need them etc, I have informed myself extensively both in this forum and in other sites, and supplements in addition to not interacting are good for our health, so I don't know if your recommendation that I stop taking all supplements seems too good I take, I know that in this forum there are people with more experience in this whole topic and they are regular consumers so I would like to know what they think.

Sorry for asking so much if someone can help me clarify, thanks, greetings.

Hello!

It is a shame that your results got lost. I know the stressful feeling the constant waiting can induce. Can you drop your consultant an e-mail or give him/her a call regarding your concerns on the results/possible TKI change. I would prefer reaching out to try to get some peace of mind rather than just waiting.

As regards to your questions

1. Higher WBC does not mean higher BCR-ABL. Higher WBC most likely means that your bone marrow is recovering from the CML or there may be a small infection. The latter may not be very likely since 8000 is in the normal range. I would not worry about that. Our bodies are in constant change, so is the content of our blood.

2. The high creatinine is not related to your moderate alcohol consumption. A person of your age should not have any problem consuming limited amount of alcohol together with TKI-s and it should not stress your body much. If you do not have a pre-existing kidney issue, the alcohol is not the reason for higher than normal creatinine

High creatinine usually has a very simple reason - you are not drinking enough water. My creatinine is also always on the higher end of normal and I can see it change depending on my water intake. Just drink plenty of water (2-2,5 litres per day) and you should see a lower creatinine number. If not, then a "just in case" question to your consultant would be wise.

TKI-s can impose some level of stress on the kidneys but as above it should not be anything a proper water consumption can not resolve.

Creatinine is a chemical waste which basically originates from the breakdown of our muscle mass (creatine, a main component of our muscles is broken down to creatinine) and which is washed out of our bodies by kidneys. So creatinine level is directly related to kidneys' efficiency. But kidneys need water to work properly. Therefore, as suggested, have at least 2-2,5 litres of water per day and see what your creatinine levels do

3.Having a stable vitamin D level is just a matter of balancing. You could lower your intake and test your levels in a month. See what happens. Having a level between 60 and 70 should not be toxic. It is a balancing act

In general, your doctors suggestion to drop all nutritional support while having a balanced diet is not wrong, it does seem to be a bit weird considering you are CML patient whose bone marrow is working hard at the moment to restore itself. It may be that since you come from Spain, which is a sunny place, you need less additional vitamin D. And most likely you have year round access to vitamin C rich fruit as well. Therefore you may need less additional supplements. But I would still encourage to supplement to give your body sufficient levels of these critical vitamins in the early months of treatment. Vitamin D is needed for cell differentiation and both vitamin D and C are needed for a proper immune response to invaders.

I do not know much about the role of curcumin and selenium, so maybe others can advise you on those

Regards

Timo

Timo - lots of interesting facts there!

Jm - i would echo Timos recommendation for 2-3l water per day. It will do wonders for you.

Also if you are going to follow your parameters so closely better do it properly and make charts about changes over time. One data point means little, and can cause you to worry unnecessarily. my advice is decide which data points you want to follow (5 or so). Go back and track the progres since diagnosis.

I do this because i move around a lot and prefer to keep my own records.

Regarding your creatine -- what was the number?  And did they also perform a Estimated GFR? 

Unless your doctor says to worry about any of your numbers - PLEASE try and not worry.  I know that is very hard -- something I struggle with every day -- but we can not make ourselves crazy over every little test!
 

 

Hello, thank you very much for your complete answer, regarding water I am aware of it and I usually drink about 3 liters a day, however I sweat a lot since I do sports frequently and perhaps I should drink more, you commented that creatinine has to do with something of the muscles and I do muscle exercises with weights 5-6 days a week so maybe it could have to do with elevated creatinine? Regarding the vitamin d, despite living in Spain, I do not usually leave home at this time due to various circumstances, so I consider it appropriate to continue taking vit d, perhaps what I will do is reduce to 5000ui every two days instead of once a day, although I don't know if it is the right thing to do in order to maintain my current level of almost 70 which is an optimal level or if on the contrary it will go down, or will continue to rise slowly, who knows, thanks again for your answer,

Eva, thank you also for answering, what you say is a good idea but having only been sick for 9 months I cannot keep records as complete and long as you suggest at this time,

JPD, regarding my creatinine number I do not have the role at this time to know exactly but I think it was 2.5 or so, nothing excessive but if to monitor according to the doctor, as to whether I had a GFR, I don't know what that is, I'm sorry, thanks for answering,
Greetings.

Hi

Yes, weightlifting does increase muscle breakdown which is ultimately restored by eating proteing.

Your excersing may be the reason for high creatinine. I'd suggest to see what the next lab report shows. If it is still high, consult with your doctor.

Timo

I have had elevated creatinine serum levels intermittently long before I had CML. I think the first time I remember having them was on a highschool sports physical, before I had ever had a single drink of alcohol. I was weightlifting, sprinting, long distance running and playing multiple sports which my doctor told me was the cause. Since I have had them come up out of range occasionally I dont think TKIs or CML have any affect honestly. Actually when I see them occasionally high I think wow I am actually not letting my CML hold me back physically :) If you want to know for sure you could always cease all physical activity 10 days before your next blood test.

Do you excercise with weights? Usually except winter my creatinine is a little bit higher than normal although I drink about five liters of water. My last test of creatinine before one month was 1.54 (the normal range is 0.7-1.4).I do crossfit and my doc told me that he believes that my creatinine is a little not high because of the type of excersise I do and my muscle mass! But just to be sure he suggested to go to a nephrologist.
So I went .I did blood tests, urine tests and ultra sound. Everything is super fine with my kidneys!
What is your creatinine level in your blood? And what is your age?

Hello, I am 23 years old, diagnosed 9 months ago, my creatinine is approximately 2.5 I do not know the exact figure at the moment, I already mentioned it in my previous comment, yes, I exercise weights in the gym for 5-6 days week, I read that the increase may be due to the increase in muscle mass, and in the last 8 months I have gained about 18 kg of which I think half may be muscle, knowing this I do not worry excessively about creatinine, I The bcr's suboptimal response that I have had in months 3 and 6 is more worrisome. I hope things will get better from now on, thanks to both of you for responding, regards

correction I just checked the exact creatinine figure and it's 1.8 I don't know why I had 2.5 in mind, in any case it's still high, but not as much as I thought

OK, you're being generally steered in the right direction here.  One thing no one has mentioned is that imatinib can "artificially" raise your creatinine level.  It often goes back to normal range if you switch meds, but mine did not.  It got much better on dasatinib and stays within 1.0 - 1.2 (this, rarely).  I had a nephrology workup which found no other cause.  There are papers on this you can find online.  One other thing - I'm not sure creatinine is nearly affected by drinking tons of water as is BUN.  Ask a nephrologist. Or just your regular doctor.