Hello I hope everyone are doing ok? I would like to ask your advice please. I posted on here that my husbands counts have been rising ( although may just be a blip) it was spotted 8weeks ago. When we go back on tues if they are still rising( this will be 8weeks) my husband said they intend to take his bloods again & see if they rise again between now & jan ( another 4 weeks). He is treated at our local McMillan centre & his bloods go to hammersmith. I wanted advice on I this is normal to leave someone so long with rising counts before other options are put into place? it's just he is feeling really I'll & sleeps a lot of the time lately( not like him). Also he tends to put all his trust in his haematologist & lets them tell him whereas I would like to know what sort of things we should be asking or saying? I hope I have made sense? thank you belinda.
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Rising counts
Hi Belinda
First thing I would say is don't panic. If your husband is feeling I'll and tired, that may or may not mean anything. Some feel tired even when responding well to their drugs. I certainly have and I am in CMR - it must be the drugs with me.
If it were me however if the counts were rising (especially if there is a couple of increases in PCR results) I would suggest moving care to a specialist CML centre. Not sure where your husband is being seen, but there are a few around the country. That way, if there is any chance the change is down to resistance to therapy he will already be being seen by those who can best advise you both. I don't think there's an immediate need to worry but if the next result is in the wrong direction, that's what I would do.
All the best
Richard
Thank you Richard for your advice. My husband has been on imatinib since 2006. He also was in the zero club & doing so well until now. He is treated in the mc unit of our hospital in Milton Keynes, bucks. I will certainly ask about him being referred to a centre of excellence, although he probably won't like me asking!!!! Congratulations on your cmr. Thanks once again belinda.
Dear Belinda,
I second everything Richard has said but I would like to encourage you to take control and ask for a referral on your husbands behalf. he will thank you in the end I am sure. His tiredness might well be due to stress and fear. Given he has been responding well since 2006 the rises in his pcr's should be investigated if there seems to be a trend i.e 2 or more showing a significant rise. Do you know what his results are? It would help if you could find out.
Best wishes,
Sandy
Hi Belinda,
Not sure if this helps, but my mum had rising PCR numbers this year after being in the zero club for many years (dx 2005). Numbers went up to 0.012, but then the latest count was zero again. Her Dr said that bouncing around in low numbers was normal. Hope this will be the same for your husband,
Good luck
Mandy xx
Hi sandy, his bcr abl was 0.79 which his haematologist said was still negliable, as he was in mmr before, it's now going up, as the reading shows, which is why they are now checking it every 4weeks. This is why they think the drugs are no longer working. Thank you for all your help & advice I always turn to this site for help & advice as you guys all know what your talking about, I don't know what I'd do without you all. Thank you.