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CLL Support Association
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First update

Hi Susiecarer here.

Hubby had his first follow up appointment yesterday at the Churchill. They are going to do more tests i.e., endoscopy x2 and depending on those results he may go on the "watch and wait" programme. Our vacation for May was discussed and it was suggested to contact travel agent and ask if they would extend final payment date by one month, as all results/tests should be complete and they can then say yes or no to travelling. Happy to report travel agent have agreed to extend. Thank you Bon Voyage.

Just need hubby to stop thinking about negativities......we will get there. He's not on this journey by himself. He has lots of family support........it's this STUBBORN MAN SYNDROME thingy that all men seem to get.

The Registrar has just phoned with results of his blood test. He is still concerned about his iron deficiency reading as it hasn't risen as much as he would have liked to see.

More bloods to get taken next Wednesday and then phone Churchill up for the results next Thursday. Has anyone else gone through this and how long did it take to show an improvement.

8 Replies

Thanks for the update Susie, good luck hope you get to travel.



'How long did it take to show an improvement'? What treatment is your husband having - is he on iron tablets (ferrous sulfate) for the anaemia?

When I got anaemic, the haematologist put me on the tablets, plus a B12 substitute (cyanocobalamin), and the red blood cell count rose fairly soon - can't remember exactly how long it took, but not more than a matter of weeks.

He also sent me for a double endoscopy, just in case... nothing found. It's not pleasant, though! But survivable! He'll get though it OK, I'm sure.


Hi scarletnoir

He has only been on ferrous sulphate 200mg (2 per day) just over the week, so not really sure what the doctor expected.

Doctor also said to drink plenty of squashes with Vitamin C so off to get a few bottles of Ribena .......


Well, with any luck the ferrous sulfate will do the trick in a few weeks - I'm not a doc, but I doubt a week is long enough to show a result.

I do hope that turns out to be the case, but it's wise to have the checks, too!

(Spelling note: 'sulphate' is the traditional British spelling, which I prefer... but the IUPAC have adopted 'sulfate', so I'm trying to move with the times - reluctantly!)


It's difficult really to explain. I THINK I know how your husband feels. I had and have fantastic support from wonderful friends, family and a tremendously supportive,positive GP but still felt only the negatives and very alone.

Now, 20 months on, I feel so sad at my negative approach to things and how I shut them out. I couldn't give them the positive attitude that they so wanted me to have. The only place I felt 'safe' was here.

Hang in there, things will get better. He's lucky to have your love and support.

Do hope you get that holiday! 😀



Susie, thanks for the update.

If he's getting therapeutic doses of iron and his marrow has the capacity to produce red cells then his Hb could be expected to rise by 1g each week, eg 10.5 to 11.5. If he is bleeding somewhere then his HB won't rise as much it should do. The endoscopy and/or colonoscopy is important. Sending best wishes.


Kidney issues can also affect HGB. If it is low, iron tests as normal and no bleeding issues are found, it would be another thing to ask about.


At the moment he is suffering from iron deficiency anaemia which they are more concerned about. Liver/Kidney function tests are all normal.


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