Turns out it wasn't the diet
Discussion
miniman said:
Was very pleased with myself for losing 3 stone or so since last summer.
It transpires that it's more likely to be because of the Chronic Myeloid Leukaemia
Start the meds next week, it's a bit of a head f
k to be honest!
Wow that is a real bummer mate it must have really fIt transpires that it's more likely to be because of the Chronic Myeloid Leukaemia
Start the meds next week, it's a bit of a head f
k to be honest!ked with yor head. Hope your treatment goes wellWishing you all the best miniman. I’m normally very private about my health but thought it was now relevant to post the below as I can empathise with you.
After 2 years of blood in my urine, I was diagnosed with kidney cancer in November and on 5th December had my right kidney and ureter removed. In a way, the speed that it all happened was probably the reason that I didn’t freak out but the initial diagnosis was a little alarming to put it mildly.
I’ve focussed on the fact that this is all a life experience that will be behind me at some stage. It sounds like yours can be controlled or even possibly cured so try to focus on that if you can. I’ve also found a new appreciation for life and the simple things so that’s all upside too
. Lastly, don’t bottle up your fears and thoughts, talk to people!
I’ll be having chemo starting in February once I’m fully recovered from my surgery so I’ll be joining you in the world of treatment!
All the best for a healthier 2019
After 2 years of blood in my urine, I was diagnosed with kidney cancer in November and on 5th December had my right kidney and ureter removed. In a way, the speed that it all happened was probably the reason that I didn’t freak out but the initial diagnosis was a little alarming to put it mildly.
I’ve focussed on the fact that this is all a life experience that will be behind me at some stage. It sounds like yours can be controlled or even possibly cured so try to focus on that if you can. I’ve also found a new appreciation for life and the simple things so that’s all upside too
. Lastly, don’t bottle up your fears and thoughts, talk to people!I’ll be having chemo starting in February once I’m fully recovered from my surgery so I’ll be joining you in the world of treatment!
All the best for a healthier 2019
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.
johnxjsc1985 said:
I am not going to post any anecdotal nonsense but from experience with my mate just make sure you have something to get out of bed for and don't let this become the only focus in your life as important as it is life is for living.
Absolutely! We knew we were exchanging on the sale of our house one day after my diagnosis. We thought about pulling out for about an hour but after two bottles of wine we realised that none of our plans should be shelved Moving to York next week, which is a new adventure for us and that’s our focus, to carve out a new future in a new location (even at 55
).Both Mrs G and I are planning lots of courses to do (one main reason for moving to a city) and we’ll get the train to Addenbrooke’s once every few weeks for chemo.
Life is for living!
garyhun said:
Wishing you all the best miniman. I’m normally very private about my health but thought it was now relevant to post the below as I can empathise with you.
After 2 years of blood in my urine, I was diagnosed with kidney cancer in November and on 5th December had my right kidney and ureter removed. In a way, the speed that it all happened was probably the reason that I didn’t freak out but the initial diagnosis was a little alarming to put it mildly.
I’ve focussed on the fact that this is all a life experience that will be behind me at some stage. It sounds like yours can be controlled or even possibly cured so try to focus on that if you can. I’ve also found a new appreciation for life and the simple things so that’s all upside too. Lastly, don’t bottle up your fears and thoughts, talk to people!
I’ll be having chemo starting in February once I’m fully recovered from my surgery so I’ll be joining you in the world of treatment!
All the best for a healthier 2019
That’s rough but why did you leave it so long before getting your urine checked?After 2 years of blood in my urine, I was diagnosed with kidney cancer in November and on 5th December had my right kidney and ureter removed. In a way, the speed that it all happened was probably the reason that I didn’t freak out but the initial diagnosis was a little alarming to put it mildly.
I’ve focussed on the fact that this is all a life experience that will be behind me at some stage. It sounds like yours can be controlled or even possibly cured so try to focus on that if you can. I’ve also found a new appreciation for life and the simple things so that’s all upside too
. Lastly, don’t bottle up your fears and thoughts, talk to people!I’ll be having chemo starting in February once I’m fully recovered from my surgery so I’ll be joining you in the world of treatment!
All the best for a healthier 2019
My wife’s uncle felt ill for years before going to the doctor,work was more important. He paid the price.
Anyway,all the best for a speedy recovery!
smifffymoto said:
garyhun said:
Wishing you all the best miniman. I’m normally very private about my health but thought it was now relevant to post the below as I can empathise with you.
After 2 years of blood in my urine, I was diagnosed with kidney cancer in November and on 5th December had my right kidney and ureter removed. In a way, the speed that it all happened was probably the reason that I didn’t freak out but the initial diagnosis was a little alarming to put it mildly.
I’ve focussed on the fact that this is all a life experience that will be behind me at some stage. It sounds like yours can be controlled or even possibly cured so try to focus on that if you can. I’ve also found a new appreciation for life and the simple things so that’s all upside too. Lastly, don’t bottle up your fears and thoughts, talk to people!
I’ll be having chemo starting in February once I’m fully recovered from my surgery so I’ll be joining you in the world of treatment!
All the best for a healthier 2019
That’s rough but why did you leave it so long before getting your urine checked?After 2 years of blood in my urine, I was diagnosed with kidney cancer in November and on 5th December had my right kidney and ureter removed. In a way, the speed that it all happened was probably the reason that I didn’t freak out but the initial diagnosis was a little alarming to put it mildly.
I’ve focussed on the fact that this is all a life experience that will be behind me at some stage. It sounds like yours can be controlled or even possibly cured so try to focus on that if you can. I’ve also found a new appreciation for life and the simple things so that’s all upside too
. Lastly, don’t bottle up your fears and thoughts, talk to people!I’ll be having chemo starting in February once I’m fully recovered from my surgery so I’ll be joining you in the world of treatment!
All the best for a healthier 2019
My wife’s uncle felt ill for years before going to the doctor,work was more important. He paid the price.
Anyway,all the best for a speedy recovery!
When I first had the blood I went to my Dr and was referred to the urology consultant. Cyscoscopy found nothing and a CT found nothing. They believed my enlarged prostate was rubbing to cause the blood as there was nothing they could see.
A year later I was still having blood so went to GP again and had second referral to urologist. They only did cyscoscopy this time and again found nothing. This time was put on finasteride to shrink my prostate. After 6 months on the meds the blood stopped so we all thought my enlarged prostate HAD been the issue and had shrunk enough now.
However... 2 months later the blood cane back. Went for cyscoscopy and CT and this was the CT that discovered the tumour.
When the urology consulted looked back to the first CT they discovered a minute lesion on my kidney which became the tumour. It was so small that the radiography people had missed it.
Considering it was classed as a fast growing and aggressive tomour, I was just lucky that it had not metastasised.
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.
OP, all the best for a rapid recovery.
My 8 year old had a nasty bout of tonsillitis that turned out to be lymphatic cancer. Spent better part of last year in hospital having chemo.
Now in remission and if he stays there for another couple of years he should be ok.
Treatment's have come on massively in the last 20 years and we have better survival rate than ever before.
Hope it all works out for you.
My 8 year old had a nasty bout of tonsillitis that turned out to be lymphatic cancer. Spent better part of last year in hospital having chemo.
Now in remission and if he stays there for another couple of years he should be ok.
Treatment's have come on massively in the last 20 years and we have better survival rate than ever before.
Hope it all works out for you.
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