Turns out it wasn't the diet
Discussion
k to be honest!Cheer Gary and the same to you.
I had a "routine" blood test last Friday (will find out from the GP whether it was really "routine" at some point) and was then called in to A&E Saturday morning with exceptionally high white cell count. Apparently they had sent some one round during Friday night to try to find me. Then waiting game until yesterday to get firm diagnosis as Ph+ CML was what they hoped it would turn out to be, which sounds slightly strange but it is significantly more treatable than other possibilities.
20 years ago this would have been a bone marrow transplant fingers crossed situation but now it's pills, potentially for ever but some people are now getting into remission and off the meds. NHS will only start treatment on "Version 1" meds (£1k / year) but fortunately Bupa have approved the "V2" (£160k / year) which apparently hits it harder and faster and is more likely to get to remission.
Very strange as there are no physical symptoms other than the weight loss and no known cause.
We will see how it goes.
I had a "routine" blood test last Friday (will find out from the GP whether it was really "routine" at some point) and was then called in to A&E Saturday morning with exceptionally high white cell count. Apparently they had sent some one round during Friday night to try to find me. Then waiting game until yesterday to get firm diagnosis as Ph+ CML was what they hoped it would turn out to be, which sounds slightly strange but it is significantly more treatable than other possibilities.
20 years ago this would have been a bone marrow transplant fingers crossed situation but now it's pills, potentially for ever but some people are now getting into remission and off the meds. NHS will only start treatment on "Version 1" meds (£1k / year) but fortunately Bupa have approved the "V2" (£160k / year) which apparently hits it harder and faster and is more likely to get to remission.
Very strange as there are no physical symptoms other than the weight loss and no known cause.
We will see how it goes.
The Leukaemia “level” is measured as a percentace of BCR-ABL mutation. When diagnosed, I was at 91%. The target for 3 months after the diagnosis is 10% so I was quite pleased to unexpectedly hear from my consultant yesterday evening with the 3 month result - 0.693%
The medication side effects have been pretty tiresome - diarrhoea, rash, aching joints, chest cough - but ultimately worthwhile. Long way to go but feeling rather more upbeat today.
The medication side effects have been pretty tiresome - diarrhoea, rash, aching joints, chest cough - but ultimately worthwhile. Long way to go but feeling rather more upbeat today.
Seems like an opportune moment to update this as I have an hour to kill whilst having an iron infusion!
Drugs are working well, with the BCR-ABL level now being 0.0613 which, as it is below 0.1%, is defined as "major molecular response" which is good.
However the side effects are racking up. There's a suspicion that there are some gastric issues caused by the meds which are making me anaemic, hence the infusion as iron tablets didn't agree with me. My skin is also pretty crap. Likely to change to a new drug in January to see how that plays out - it will bring with it new side effects so may a bit of a frying pan / fire situation!
Many people in the Facebook group I'm in have never worked again since diagnosis so I feel the side effects are trivial in the grand scheme of things. In fact, I started a new job in November which brought with it a significant reduction in stress which was immediately reflected in reduced side effects.
Onwards and upwards!
Drugs are working well, with the BCR-ABL level now being 0.0613 which, as it is below 0.1%, is defined as "major molecular response" which is good.
However the side effects are racking up. There's a suspicion that there are some gastric issues caused by the meds which are making me anaemic, hence the infusion as iron tablets didn't agree with me. My skin is also pretty crap. Likely to change to a new drug in January to see how that plays out - it will bring with it new side effects so may a bit of a frying pan / fire situation!
Many people in the Facebook group I'm in have never worked again since diagnosis so I feel the side effects are trivial in the grand scheme of things. In fact, I started a new job in November which brought with it a significant reduction in stress which was immediately reflected in reduced side effects.
Onwards and upwards!
Hoofy said:
Glad to hear things are on the up for you.
Interesting to note the effect stress has on the side effects. Have you tried mindfulness? There's a link in the anxiety thread to a 45 minute workshop I ran. Can find it for you if you're interested.
Yes that would be great, thanks Interesting to note the effect stress has on the side effects. Have you tried mindfulness? There's a link in the anxiety thread to a 45 minute workshop I ran. Can find it for you if you're interested.
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