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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
sg3 on 21 December 2017

Category: Food & fitness

Replies: 2

Last updated: 22 December 2017

power plates
by sandy craine (Dec 22)

I reckon most kinds of exercise would be beneficial when CML is stable. At diagnosis, it would be best to be cautious due to possible problems with palates and possible enlarged spleen etc.

by David Fitz (Dec 22)

The vibrating exercise machines? Can't see any reason at all why not. They're pretty good, even if it is really funny trying to talk while using one!
David.

by sg3 (Dec 21)

Bit of a strange one ,but does anyone know if you can use power plates with CML ?
Category: Food & fitness

Replies: 2

Last updated: 22 December 2017
MartinZA on 21 December 2017

Category: Side effects

Replies: 1

Last updated: 21 December 2017

Question on drug switching
by David Fitz (Dec 21)

Hi Martin,
Sorry for the hurried response, but here's my quick take on things:
1. Switching to imatinib is generally not done because historically imatinib is where patients started. So

by MartinZA (Dec 21)

Good morning everyone
Yesterday I had my two-year follow-up appointment with my haematologist and I had two pieces of news, one good and one bad.
Good news: after two years, I have finally reached
Category: Side effects

Replies: 1

Last updated: 21 December 2017
HelenS on 30 November 2017

Category: Blood tests

Replies: 3

Last updated: 21 December 2017

BCR-Abl level up
by T and M (Dec 21)

Hi Helen. I hope this finds you more settled with what you are facing. My husband has been on Imatinib for 2 and 1/2 months now. He started at 89.7%, went to 34.43% and the last

by EvaH (Dec 4)

Hey there
Sorry you are feeling stressed by the numbers, however do remember, at some point they are just numbers...indicators! The important thing is how you FEEL physically and if you can get on

by Olivia (Dec 1)

I can understand your concern, Helen.
It may be that your second "miraculous" result was less than accurate, as this sometimes happens and the other two results show a reasonable decline.

by HelenS (Nov 30)

I was diagnosed in January this year. My BCR-ABL at diagnosis was 18.9%.
At 3 months on Imatinib it was 12.6%.
At 6 months 0.045% which my consultant said was a miraculous result.
Then
Category: Blood tests

Replies: 3

Last updated: 21 December 2017
Sue.J on 16 December 2017

Category: Side effects

Replies: 1

Last updated: 21 December 2017

Teeth
by T and M (Dec 21)

Hi Sue. My husband has been on Imatinib for about 2 1/2 months now and I noticed first his teeth, especially the molars, were looking brown. We have not yet seen a dentist and it is on

by Sue.J (Dec 16)

Hi folks, I have been taking imatinib for 7 week now (diagnosed september) and am responding well, I have however noticed my teeth are becoming increasingly discoloured, I am finding this quite
Category: Side effects

Replies: 1

Last updated: 21 December 2017
Jazzes on 18 December 2017

Category: About CML

Replies: 3

Last updated: 21 December 2017

Side effects
by Jazzes (Dec 21)

Hi, Nigel / chrissie

Thank you for the response

We will definately look into the magnesium spray ... thanks ,

I'll give you some info on his bone marrow report... upon

by chrissie (Dec 19)

I would like to repeat what Nigel has said. Why 800mgs? 400mgs is the normal dosage for Imatinib/Gleevic. If you don't know why 800 was prescribed I would ask your consultant. It may, of course,

by nigel (Dec 18)

Hi and welcome so to speak to the group. Muscle, bone and joint pain are quite common with Glivec, especially early on, for many it does settle down. I used magnesium spray for muscle pain, which

by Jazzes (Dec 18)

Hi all
My husband was diagnosed on Aug 26 2017 CML he has been on gleevec for the past couple of months .. he's been complaining of joint pains which is affecting his daily lifestyle . I have told
Category: About CML

Replies: 3

Last updated: 21 December 2017
David Fitz on 20 December 2017

Category: Uncategorised

Replies: 1

Last updated: 21 December 2017

Spam on the forum - apologies
by MartinZA (Dec 21)

Hi David
Thank you for all the efforts you are making in preventing this spam! It blows my mind that someone would be so cruel and thoughtless as to spam a cancer forum, but hey... the world

by David Fitz (Dec 20)

We’ve been experiencing some heavy-handed spamming from one individual over the last few days. Sorry if this has made it difficult to find the content you wanted on the forum.
We’ve put some extra
Category: Uncategorised

Replies: 1

Last updated: 21 December 2017
chrissie on 20 April 2017

Category: Uncategorised

Replies: 7

Last updated: 20 December 2017

Osteoporosis anyone??
by alliswell (Dec 20)

chrissie thanks for the answer ,
i am not sure we are making the right choice but we decided to not to take any medicine for osteoporosis .(except vitamin d and calcium supp) modifications for

by chrissie (Nov 20)

Sorry for delay - just seen your post. Yes I was taking Alendronic Acid once a week since April but it made my "dry" eye and red eye worse than usual. (It is already a side effect of Imatinib so

by alliswell (Nov 4)

chrissie
i am not sure you can see this or not . maybe i should open a new thread
last month my mothers PTH problem has been solved . now our doctor want to start osteoporosis treatment .

by chrissie (Apr 23)

Thank you everyone who answered. I feel better about taking the supplements now - assuming that is what my GP will prescribe when I see her on Friday. I assume the calcium is also OK.
Best
Chrissie
Category: Uncategorised

Replies: 7

Last updated: 20 December 2017