Your view on what questions I should ask at my teleclinic next week.

[Random78]

Having a teleclinic with one of our cancer nurse specialists on thur (29th Oct) and arranged for her to send me my results BEFORE the teleclinic so I can study the results and ask appropriate questions rather than scribbling down what she says and then asking for them to be posted out to me.

So I've been quite tired recently, usually 3 to 4 hrs after I get up and indeed some days have had stop work and take a nap for a couple of hours - even after having a few days off on leave. I phoned the CNS to ask if I could have my W&W check a month early (last bloods drawn in May) as I haven't been feeling too well recently - though quite a lot better on the day the bloods were taken.

I see the expected slow rise in ALC (44) and reduction in neutrophil count (2.57) and Hb is within the normal range. However serum creatinine (85), GFR (59) and serum folate (3.5) are outside reference ranges. I think these might be showing some kidney function issues, certainly on the day the bloods were drawn. Does anyone have any advice on the type of question I should ask / CNS will ask?

Many thanks in advance

Helena

[devonrr]

I prepare for my telephone consultation by experience of what happens in real life.

I weigh myself. I write down past principal records. I write down how I’ve been since last time. I feel for lumps and bumps.

Then I think of questions. These of course are personal to you. The clinical nurse is not the expert but can then go and ask the consultant questions to get back to you.

I’ve been lucky with my disease so questions are often about maintenance such as jabs.

A letter will go to your GP so if there is anything outstanding the GP can be advised by the clinic.

But most people want to know about stability or progress of the disease and your questions should be about this. Remember the nurse is not the expert!

I have a strange view! If the consultant doesn’t want to see me I can’t be that bad. Let him concentrate on those who are poorly and need treatment.

[Random78 in reply to devonrr]

thank you devonrr - useful info - didn't even think of the normal indicators such as weight - silly me!!

[lankisterguy Volunteer]

Hi Random78,

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What you describe as the increasing fatigue is familiar to me. Each time I progressed and needed treatment, the fatigue was much stronger than my blood tests would suggest. The kidney function is not familiar.

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You may want to review this list of 1255 previous posts that mentioned fatigue:

healthunlocked.com/cllsuppo...

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And you may want to request permission to record the tele session with your smart phone using the iPhone feature or Easy Voice Recorder on a Droid.

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Len

[Random78 in reply to lankisterguy]

Thank you Len - yes, I was thinking of that - must look on my phone to see how I can do it!!

[Palmetto in reply to Random78]

Fatigue seems to come along with CLL but it sounds like your values are pretty good I don't know what your white count is but it sounds like you're not at the point where you would need treatment but that is just my opinion based on what you've said just keep in mind that whenever you start treatment you always open up side effects which can cause some of the same issues. I also don't know what your age is so a lot of those factors make the difference. I hope your news is good.

[Random78]

So a quick update. Haematology CNS suggested 3 month prescription of folic acid with blood draw 4 weeks in and again at the end. Started on 5mg per day a couple of days ago.

Apparently folate/folic acid helps red blood cells uptake and deliver oxygen. Larger than normal platelets can affect oxygen uptake and hence delivery, which can lead to lower levels of energy. Of course folic acid has other tasks, but I was interested in the interaction with RBC as my platelets are slightly large and if a little folic acid now and then can reduce tiredness and fatigue it will help stop the old brain worrying that actual treatment looms! 🤔😟😱