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Rebecca Bonnell on 12 November 2016

Category: Food & fitness

Replies: 7

Last updated: 30 January 2018

Extreme Fatigue with CML and the drug Imatinib
by Carolinemb (Jan 30)

Thanks for replying Sandy x

by sandy craine (Jan 30)

This list is personal to me... so it depends on what you personally need - generally I try to take the following Vitamins and minerals on a daily basis:
Vitamin C in the form of ascorbic acid powder

by Carolinemb (Jan 29)

Hi Sandy,

just wondered what the vitamin b complex is you take? And what other supplements you take?

Thanks Caroline

by EvaH (Feb 7)

Thanks....lot of info I didnt know there! Esp on citrus fruits and cranberry :-o
Your story got me wondering, I'm now 42 and was diagnosed last year. I have some savings and though some work
Category: Food & fitness

Replies: 7

Last updated: 30 January 2018
Melanie Preece on 14 January 2018

Category: Side effects

Replies: 2

Last updated: 22 January 2018

New and confused
by T and M (Jan 22)

Hi Mel,
Very sorry to hear about your mum. The first few months can be rough, especially when you have other medical issues.

My husband was diagnosed 3 months ago and has had some

by David Fitz (Jan 16)

Hi Mel,
That sounds really tough for your mum, and I am sure difficult for you too.
Stiffness and aching are common enough complaints, and in most people do subside after a while. Perhaps it takes

by Melanie Preece (Jan 14)

Hi all I’m new to this my darling 75 year old mother has been recently diagnosed with cml and has been taking imatinib for about a month now she didn’t feel well before hand but I’ve seen her change
Category: Side effects

Replies: 2

Last updated: 22 January 2018
T and M on 21 December 2017

Category: Getting help

Replies: 7

Last updated: 22 January 2018

Diagnosed with CML in September, 2017
by T and M (Jan 22)

Thank you so much for such a thorough response! I would have responded soon but he was airlifted up the road yet again with a UTI/kidney infection.
Since then they have performed a cystoscopy

by LucyandMark (Dec 30)

Hi Michelle and Tim. We're on that same journey with you! Mark was diagnosed late November 2017, just a few days before his 47th birthday. So sorry to hear of the UTI complications and your long

by ColoradoGuy (Dec 22)

Sorry I replied to your post in Sandy's reply as opposed to here. Please see reply below as we were diagnosed pretty much at the same time.

by ColoradoGuy (Dec 22)

Hello I too was diagnosed around the same time. Late August 2017. A week before my 37th birthday. My wbc is low on last checkup. 2.8 which is not in the normal range.

I don't think I have
Category: Getting help

Replies: 7

Last updated: 22 January 2018
cct121 on 19 January 2018

Category: Blood tests

Replies: 9

Last updated: 21 January 2018

Fluctuating Log Reduction results
by Justine (Jan 21)

I neglected to mention that I have been on 400 mg Gleevec since day 1.
Take care!

by Ellie Regina Grey (Jan 21)

Hello there,
My diagnosis was also in December 2016, with CML % count so high that even the lab commented: "unable to provide accurate number". Let's not talk about my white blood counts!
Funny,

by cct121 (Jan 21)

Thanks for the information pamphlet David!
Justine, that’s roughly the same trend I followed in the first year. It does look like you’re heading on a good recovery trend!!:)

by Justine (Jan 20)

These are my results. My tests are done in a lab in New Jersey, USA.
7 April 2017 date of dx
BCR/ABL1 of b3a2 Type: 59.08% International Scale Ratio: 49.0364%

6 July 2017 3
Category: Blood tests

Replies: 9

Last updated: 21 January 2018
shebako on 19 January 2018

Category: Uncategorised

Replies: 2

Last updated: 19 January 2018

Help
by shebako (Jan 19)

Many thanks. I had lost close to 2kgs weight before diagnosis and i have also maintained my kgs ranging 61 - 63kg in my life initially.
Apparently i just wished to add a little more.
I thought of

by David Fitz (Jan 19)

Hi there, and welcome!
Lucky you! No side effects is fantastic, and does not mean that the treatment isn't working. Some people are just lucky, others unlucky! When you think about it, it's natural

by shebako (Jan 19)

Hi am new here,am shem.

I have been using glivec close to one and a half months but i do not experience side effects.Is it normal?

For weight gain... i am 9.5 stones and would want to
Category: Uncategorised

Replies: 2

Last updated: 19 January 2018
JacqJohn on 10 January 2018

Category: Blood tests

Replies: 2

Last updated: 19 January 2018

Low WBC and sensitivity to TKIs
by AlastairC (Jan 19)

Hi John. Low WBC on imatinib has been my experience since I was diagnosed in 2007.
I always had low wbc, first investigated in the 1980s when I had a testicular cancer. (it is likely that the

by sandy craine (Jan 14)

Hi John,
your overall white cell count is lower than the normal ref count but given you are being treated with TKI therapy (and so recently diagnosed) your white cell count will be lower than

by JacqJohn (Jan 10)

Hi all,
ive been diagnosed with CML back in Sept 2017. Was first put on hydroxyurea then started on Nilotinib. However after a week into Nilotinib, my liver function test went up very high
Category: Blood tests

Replies: 2

Last updated: 19 January 2018
Carolinemb on 17 January 2018

Category: About CML

Replies: 2

Last updated: 18 January 2018

Wbc in urine analysis
by Carolinemb (Jan 18)

Thank you David, very kind of you to research that for me, I appreciate it..

by David Fitz (Jan 18)

Hi Caroline,
It's not something I've heard before, to be honest.
As far as I know, blood cells in urine is usually either a UTI issue or a kidney issue. Following a thought that the CML itself might

by Carolinemb (Jan 17)

Hi,

just wondered if anyone has had high white blood cells & / or microscopic amount of blood found in urine whilst having this condition? I’ve just been diagnosed with cml and wondered
Category: About CML

Replies: 2

Last updated: 18 January 2018
chrissie on 17 January 2018

Category: Uncategorised

Replies: 4

Last updated: 18 January 2018

Decisions
by Olivia (Jan 18)

Hi Chrissie
You are in a better place than I am - after some time on 200 mg of imatinib, my PCR was up to 0.06 in October 17, and I went back up to 300 mg. I had my latest test today, and am

by chrissie (Jan 18)

Thanks to both David and Lucas for replies which chime with my way of thinking. it's so low anyway I'm not worried.
best
Chrissie

by Lucas (Jan 17)

Hey, chrissie! I would wait some more time. maybe one or two more tests. If the upward trend continues, maybe you can have 300mg and 400mg in alternate days. Good Luck. As david said: your last 2

by David Fitz (Jan 17)

Hi Chrissie,
I wouldn't change anything. I'm actually in a similar situation to you at the moment - dropped dose, but saw a small spike soon after. I'm holding firm for the time being.
In your case
Category: Uncategorised

Replies: 4

Last updated: 18 January 2018
Carolinemb on 17 January 2018

Category: Blood tests

Replies: 2

Last updated: 17 January 2018

PCR / BCR
by Carolinemb (Jan 17)

Thank you for taking the time to explain this..

by David Fitz (Jan 17)

Hi Caroline,
Welcome to the forum.
This is one of those occasions where people get confused, and you regularly see them mixing up their terminology. But you have found the right place to get the

by Carolinemb (Jan 17)

Hi,
i am newly diagnosed this week & trying to understand everything. Could anyone explain if a BCR test is the same thing as a PCR test? And what is the difference between BCR & what PCR
Category: Blood tests

Replies: 2

Last updated: 17 January 2018
Shammell on 8 February 2016

Category: Food & fitness

Replies: 7

Last updated: 12 January 2018

6 Months into treatment and wanting to get fit again. But the weight wont shift!
by chrissie (Jan 12)

Oh goodness yes, yes ,yes. I got fed up with the weight gain on 400mgs imatinib and hit the gym 3 times a week + keep fit class+ walking miles in hilly Devon - and the weight remained the same

by Tidal-Life (Jan 12)

Just my few cents, not necessarily useful, just my experience as I find the topic interesting: "before" cml can be "way before" or just up-to/before diagnosis...in my case I started dieting 6

by EvaH (Jan 12)

Hi there

My sympathies, I also find it harder to shift weight now on imatanib. It took 3 months of being on 1500cal per day for me to shift anything and I visited my mum for 3 weeks and

by abhay (Jan 8)

I know this is tough task to do but doing ragular workout than you will found the changes in your body trust me keep practicing hard and harder as all as i can say to you now.

http://
Category: Food & fitness

Replies: 7

Last updated: 12 January 2018
Tidal-Life on 26 September 2017

Category: Uncategorised

Replies: 3

Last updated: 12 January 2018

Introduction
by Tidal-Life (Jan 12)

Update: after around 6 months on Imatinibmy bloodcounts are basically back to normal, BUT the Philadelphia Chromosome / BCR-ABL is still too high in percentage, so the Doc (the "European LeukemiaNet

by Tidal-Life (Sep 28)

Nice meeting you David; yes, I read in the other thread you were switched to dasatinib - I'll see how I respond/what happens reg.side effects ;)

Great to hear you respond well and feeling good

by David Fitz (Sep 28)

Hi there, and welcome to our little club that we'd all prefer not to be members of! Thanks for introducing yourself.
It sounds like you're responding well to your treatment - which is great. I was

by Tidal-Life (Sep 26)

Was looking for a section in the forum or the profile to introduce myself, but didn't find any - as you can sense I'm new in here..my apologies if this isn't the right section, please move my post.
Category: Uncategorised

Replies: 3

Last updated: 12 January 2018
vonnie on 2 January 2018

Category: Uncategorised

Replies: 2

Last updated: 7 January 2018

Flu
by vonnie (Jan 7)

Hi and thanks David for your reply this is where i think the forum is good it gives you confidence and reassurance so thanks again

Vonnie

by David Fitz (Jan 4)

Hi Vonnie,
Despite all the warnings the Australian flu doesn't seem to have spread as much as expected.
At this time of year I always am extra careful to be near to people obviously a bit sick. I

by vonnie (Jan 2)

hi i havent been on for a while and doing really well but just wondering with all these reports of australian flu about do you need to be extra careful if you have cml and if you did have flu
Category: Uncategorised

Replies: 2

Last updated: 7 January 2018
rsgiles on 2 January 2018

Category: Blood tests

Replies: 10

Last updated: 5 January 2018

PCR test
by Justine (Jan 5)

Ellie a big thanks to you, too (please see my response to David; same to you).

by Justine (Jan 5)

David, I just want to thank you for that very smart, kind, reassuring and helpful reply. After 9 months since diagnosis I am still constantly perplexed by it. Your statement clarifies a great deal.

by Ellie Regina Grey (Jan 5)

Hello,
I concur with what David has put down regarding the term "undetectable" to translate a PCR test result.
To me, the word "undetectable" has a close link with the word ""impossible" in my

by David Fitz (Jan 4)

Hi,
0.004% means four in one hundred thousand. 0.0092% means ninety-two in a million (nine and a bit in a hundred thousand). If one is IS and the other is not IS (international standard) it
Category: Blood tests

Replies: 10

Last updated: 5 January 2018
ayaz ahmad magray on 2 January 2018

Category: Uncategorised

Replies: 2

Last updated: 5 January 2018

cml with grade 1 fibrosis
by ayaz ahmad magray (Jan 5)

yes i tell my concologist about low platelet cause my platelet varies from 100 to 130 he said becoz of mylofibrosis ur platelets r low. my other blood counts r normal except platelets.

by David Fitz (Jan 4)

Hi Ayaz,
Fibrosis of the marrow is often checked for at the start of treatment via a trephine done at the same time as a bone marrow biopsy. I guess you had that? It's not fun.
Grade 1 is obviously

by ayaz ahmad magray (Jan 2)

8 month b4 i was diagnosed with cml with grade 1 fibrosis i do nt understand grade 1 fibrosis my current bcr abl % is 0.09776.
Category: Uncategorised

Replies: 2

Last updated: 5 January 2018
LucyandMark on 29 December 2017

Category: Side effects

Replies: 4

Last updated: 4 January 2018

High liver enzymes
by LucyandMark (Jan 4)

Thanks Emily... As it happens neither of us has touched a drop since Mark's diagnosis!! Its seems a small price to pay to let the drugs have maximum effect!
Best wishes, Lucy

by Emily (Jan 3)

Hi Lucy and Mark,
You are most welcome.
I forgot to tell you that my doctor advised me to stay away from any alcohol while my liver enzyme, ALT was high. In fact, I seldom drink wine, maybe only a

by LucyandMark (Jan 1)

Thank you Emily, thats very encouraging. Thank you so much for all those dates too, really helpful. We'll tell the consultant on Friday. Just hope too much damage isn't done in the meantime!
Happy

by Emily (Jan 1)

Hi Lucy and Mark,
I was diagnosed as having cml on 12 Feb 2016. I started to take Nilotinib 300mg once daily, which was only half the standard dose (600mg). But on 26 Feb 2016, my liver enzyme ALT
Category: Side effects

Replies: 4

Last updated: 4 January 2018
jaideepdoc on 1 January 2018

Category: Organising your life

Replies: 1

Last updated: 1 January 2018

diagnosed with cml in december
by LucyandMark (Jan 1)

My husband feels very much the same.
... But the good thing about this forum is you're not alone!
Best New Year wishes from Mark (diagnosed CML Nov 2017) and Lucy

by jaideepdoc (Jan 1)

hi All

I have been doing my blood reports at least once a year. I did my last one in dec 2017 and was shocked when i got a call that my WBC was high at 85000 appox
Next few days was a
Category: Organising your life

Replies: 1

Last updated: 1 January 2018
starente on 11 November 2017

Category: Side effects

Replies: 2

Last updated: 31 December 2017

Migratory joint pain?
by DaveG (Dec 31)

I've been taking Sprycel now for almost three years. Had some minor aches and pains (Charlie Horse type) mainly in toe on right foot. Now, new pain in upper back near spine and numbness in two

by sue. R (Nov 22)

Hi there, I had joint pain before I was diagnosed in June 2017, no tablet or rub would stop the pain but my blood test would show Uric acid is high. Once I started spyrcel 100 in July I was

by starente (Nov 11)

Hi everyone
i was wondering if anyone has experienced sudden onset of joint pain months after starting gleevec or sprycel? The pain migrates so one day it can be in the jaw, the next day it
Category: Side effects

Replies: 2

Last updated: 31 December 2017
Leigh Pettus on 31 December 2017

Category: About CML

Replies: 1

Last updated: 31 December 2017

Grateful to have found this!!!
by Ellie Regina Grey (Dec 31)

Hello Leigh,
Welcome to the forum, CML aside.
My own diagnosis was in December 2016 and was immediately put on nilotinib 300mg twice daily thereafter.
To your posted concern on your leg pain,

by Leigh Pettus (Dec 31)

I was diagnosed in June 2016. Started Tasigna aug 216. Things went well up until June 2017. I am having terrible pain in right leg, have found no relief for it hoping someone here has advice.
Category: About CML

Replies: 1

Last updated: 31 December 2017
Bims Akomolafe on 29 December 2017

Category: Children & young people

Replies: 2

Last updated: 30 December 2017

children with CML
by Bims Akomolafe (Dec 30)

Thank you very much Irishmammy for the advice. I will try the hot water bottle for him and discuss it with the haematologist next week.
regards,
Bims

by Irishmammy (Dec 29)

Hello there, I'm a mummy to a little one aged 7 who was diagnosed 4 years ago. My best source of information was our fantastic consultants in our local centre. My daughter is on a tki and we manage

by Bims Akomolafe (Dec 29)

Hi,
My son (12yrs old) was diagnosed with CML in November 2017. He is currently on Imatinib 400mg and we were told by the doctors that he will live a normal life. We are still trying to get our
Category: Children & young people

Replies: 2

Last updated: 30 December 2017
Batku on 20 November 2017

Category: Uncategorised

Replies: 11

Last updated: 12 December 2019

Hi! My introduction
by ColoradoGuy (Dec 22)

Batku
I was diagnosed August 2017 and do remember having sleepless nights. I will say that I no longer have them and believe it will pass for you as well. This is a great place for information.

by T and M (Dec 21)

Dear Batku,
We are on the journey with you. My husband was diagnosed mid September, 2017 and we just started using this site ourselves. It is foreign, there is a lot to take in, but in

by David Fitz (Dec 5)

Hi!
Some doctors don't do bone marrow tests at all, even at diagnosis. PCR tests from peripheral blood are often enough to tell the doctor what they need to know.
Complete cytogenetic response (CCyR

by Amit (Dec 4)

Hi David just a quick question the 6 month bcrabl test to determine complete cytogenic response does one have to also do another bone marrow as well or is bcrabl enough?
Category: Uncategorised

Replies: 11

Last updated: 12 December 2019