What's the lowest Haemoglobin anyone has had d... - CLL Support

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What's the lowest Haemoglobin anyone has had during treatment?

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keepfit123
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David39 profile image
David39

Hi keepfit123, how is your treatment progressing? My Hb count dropped only to 12 during treatment so only marginally low. I know that others have had much lower counts, yourself included, I would guess, as you asked the question! Ironically my count dropped to 10 about a year AFTER treatment, still not significantly low by any means, but enough for me to notice the effects when doing anything physical.

I am still w&w and my haemoglobin dropped quite rapidly over a short period of time but has been stable over the last two years at 11 and platelets at 55. I hope these will not drop further during treatment.

Mikey47 profile image
Mikey47

Hi Mike, are you coming up for treatment? It has been mentioned to me that I will be needing treatment 'this year'. I know that, like me, you have the 11q deletion. I'm wondering whether or not to refuse chemo altogether. I am going to push for a trial when it comes up again.

Mikey

jangreen profile image
jangreen

Hi although my haemoglobin was stable during and after treatment, my immune counts dropped drastically and have never really recovered post treatment.

keepfit123 profile image
keepfit123

The reason I asked this question is because at the pre chemo blood check just before the 4th treatment cycle of FCR my Haemoglobin was 4.7 (this treatment cycle was then abandoned). I was admitted to hospital for 5 days and given 6 units of blood.

As of today the figure is 9.3 with a further check to follow . Treatment might then be resumed.

Quarry profile image
Quarry

Gracious 4.7 IS low!! I was only picked up as CLL when the blood donation service refused to take blood due to too low heamoglobin: it turned out to be 10.4, but has gone up on its own at last check.

I have a friend who is a physio who specialises in heamophyliacs. One of her patients is around 5 and appears to have adjusted to this (though he is not an active person) and doctors are currently not thinking of boosting!

From your title, I suspect you are not sedentary though! Let's hope you keep at 10+

I am finding I get increasing breathlessness when exercising, which I find very frustrating. It is all ok if I slow exercise down (so I can still swim a mile, but it now takes me 20% longer....and at 53, I don't think this is down to age!) and have almost given up on things like a cross-trainer in favour of cycling.

Have you had similar experiences?

Andy

keepfit123 profile image
keepfit123

I noticed I was getting breathless doing mild exercise and my heart was beating faster than it would normally have done. Hopefully the reason for the initial low haemoglobin can be fathomed out (enough blood samples have been taken)

keepfit123 profile image
keepfit123

The preChemo blood test today Thursday 7th March gave a Haemoglobin of 9.5

Other results were WBC 3.0 , % Lymph 16.7, ALC 0.5 , RBC 2.90 , ANC 2.0 ,Platelets 206

So its all systems go fo revisit cycle4 tomorrow with Rituximab followed by 5 days of Fludarabine and Cyclophosphamide.

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