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Doshi on 19 May 2016

Category: Blood tests

Replies: 2

Last updated: 19 May 2016

Gleevec resistance?
by David Fitz (May 19)

Hi Raj,
With regards to timing ... with imatinib, you are "topping up" a level in your body so breakfast or lunch ought not to make a difference really. Though it's best to take as

by nigel (May 19)

Hi Raj, Welcome to the group. Your results have been outstanding for 10 years. I do feel that your " blips" are exactly that and not resistance. Your levels are still very very low and

by Doshi (May 19)

Hello All,
I am new to the group. Hope you can help answer my question.
History: I was diagnosed CML in 2001. After 2-3 years On gleevec 400mg, I was in major molecular response and
Category: Blood tests

Replies: 2

Last updated: 19 May 2016
Lopaulpa on 16 May 2016

Category: Side effects

Replies: 2

Last updated: 17 May 2016

Do you eat any supplements, vitamins and such?
by David Fitz (May 17)

Vitamin D because I'm low on that, but then again nearly everyone in the UK is!

by darley (May 16)

No. I just have a well balanced diet so get everything I need there. Also have regular blood,checks so i know I'm neither deficient or have problems with malabsorption.

I'm not a

by Lopaulpa (May 16)

I am wondering because of the low energy I have and all that side effect business with me taking Tasigna, I was wondering if ya'll take any vitamin supplements or something like that to get some
Category: Side effects

Replies: 2

Last updated: 17 May 2016
RufusBabe on 20 April 2016

Category: About CML

Replies: 3

Last updated: 13 May 2016

New to the group
by nicholas22 (May 13)

Hi rufus, I was told I had cml about a year ago, and it to made me very angry. Ive led a very healthy lifestyle, but as we all know with cml its nothing really to do
with that, after a year on

by sandy craine (Apr 21)

Hi,
It must be very hard for you to cope with your sisters anger which is really an expression of her fear.... I do agree with David that you might try to learn as much as you can about CML,

by David Fitz (Apr 20)

Hi there. I know - all of us here know - how your sister is feeling at the moment. Anger is a pretty normal response to a cancer diagnosis. Unfortunately, our nearest and dearest are the ones

by RufusBabe (Apr 20)

Hello everyone
Hope you are OK :) My sister has been diagnosed with CML and she has been so angry since. She cannot stand seeing me as I have not CML and constantly tells me I should have CML
Category: About CML

Replies: 3

Last updated: 13 May 2016
teddyb on 13 April 2012

Category: Uncategorised

Replies: 18

Last updated: 12 May 2016

Safe to split 400mg Glivec in 3 or 4 parts for easier swalloing?
by chrissie (May 12)

Hi teddyb
Thanks for you reply. I have now started taking the 400mg as one whole tablet again and the pain in my oesophagus is decreasing, so am wondering if it was taking the tablet in 2 halves.

by teddyb (May 10)

Chrissie: I have also been on the 100mg for the last years now, i hope you can get them soon. The small pills are "scored" so they can be split, but i think there is a lot more Imatinib

by chrissie (Apr 26)

Thanks for your reply, Olivia.
Yes I have always had problems swallowing the 400mgs. I was so pleased when I was on the 2x100mgs as they were easy to swallow, but after losing MMR 3 times in the

by Olivia (Apr 26)

That's interesting, Chrissie. When you were first diagnosed and presumably put on the big 400 tablets, did you have any difficulty swallowing them then? Have you asked about going on
Category: Uncategorised

Replies: 18

Last updated: 12 May 2016
rsgiles on 4 May 2016

Category: Blood tests

Replies: 9

Last updated: 10 May 2016

How often between PCR tests
by teddyb (May 10)

Hello.

I have been tested every 3 months up until now, but after 4 years of CML, and being in MMR for the last 3 years, i am now having pcr tests done every 6 months.

Good luck to you

by sandy craine (May 6)

MUGA scans are usually for those who have had radiotherapy to the chest, spine or upper abdomen or those who have had a stem cell transplant or certain 'chemotherapies'. I had to have a MUGA

by darley (May 6)

Not because of imatanib. But I do know that some chemo can cause heart problems. Not so far as I'm aware the TKI's though.
I have had one and because I had total body

by rsgiles (May 5)

Did anyone ever have to take that MUGA test for the heart?
Category: Blood tests

Replies: 9

Last updated: 10 May 2016
Parklife on 5 May 2016

Category: Side effects

Replies: 9

Last updated: 9 May 2016

Steroids and lesions
by darley (May 9)

Hey it's been fabulous and sunny here this week. Mind you we were white over with snow the week before.

by Parklife (May 8)

Hi Sandy
Many thanks for all this information and links.
Interesting point about the plasma testing, this is something that hasn't been mentioned, I'm not saying this hasn't been tested, but to my

by sandy craine (May 8)

John-Paul,
Re your vitamin D3 deficiency... well you can do something about that quite quickly-
a. sit in the sun as much a possible - Darley suggests a holiday but if you can't manage that

by darley (May 8)

For sure you've got a dilemma and a big decision to make. Sounds like you need a holiday in the sun to boost your vitamin D and give you some head space to think it through.
All the best.
Category: Side effects

Replies: 9

Last updated: 9 May 2016
Judith on 8 May 2016

Category: Uncategorised

Replies: 2

Last updated: 9 May 2016

Decision time
by darley (May 9)

I absolutely agree with Sandy

by sandy craine (May 8)

Hi Judith,
I am rather alarmed that your doctor has not given you another TKI to keep your CML under control. Where are you being 'treated' ?? There is no doubt that your bcr/abl counts will

by Judith (May 8)

To Sandy and Darley
Many thanks for your replies. When I made the decision to stop dasatinib I asked my doctor what TK I would be put on should my counts start to go up. I was surprised when
Category: Uncategorised

Replies: 2

Last updated: 9 May 2016
Lopaulpa on 3 May 2016

Category: Side effects

Replies: 6

Last updated: 8 May 2016

New here, I am having a difficult time.
by Lopaulpa (May 8)

Also, sex life is not very good at the moment because of all of this.. my energy is not good at all and I have used Cialis from the doctor and it helps with keeping it up but then also the energy

by Parklife (May 4)

It may be worth asking where you are from a molecular perspective. If you have a very good response and therefore are sensitive to TKI's that may also be worth discussing a redution of Tasigna

by Lopaulpa (May 4)

Thank you for the reassuring David, I am glad I am not the only one this is happening to.
It has been so hard, I am 28 and I can barely clean up around the house without being exhausted and dripping

by Lopaulpa (May 4)

Hi and thanks for kind words, I am also glad I found this forum.
I switched the meds because I think the side effects were even worse on Imatinib, and I was moving from Iceland to Denmark so my
Category: Side effects

Replies: 6

Last updated: 8 May 2016
Moirah on 20 April 2016

Category: Uncategorised

Replies: 11

Last updated: 7 May 2016

Do you take your imatinib same time daily
by David Fitz (May 7)

Hi again Moirah,
This topic just came up at CML Horizons 2016 conference. One of the doctor's there (Dr Rossi) spoke about he was not that concerned about taking imatinib at different times of

by darley (Apr 25)

Mine's slightly different to that. It says

Try to takeat the same times of day each day, as this will help you to remember to take your doses regularly.
If you do forget to take a dose,

by David Fitz (Apr 24)

Whilst I think all patients should be very familiar with the patient information leaflets and the content of them, the Glivec one isn't massively helpful in this instance.

Take the

by darley (Apr 24)

If you read your leaflet it tells you what you should do in terms of taking the medication and delay.
Category: Uncategorised

Replies: 11

Last updated: 7 May 2016
Judith on 25 April 2016

Category: Uncategorised

Replies: 2

Last updated: 7 May 2016

Decision time
by darley (May 7)

Judith, Not sure how I missed this post. I'm sorry if you think you were being ignored.
That's a really difficult position to be in and I can absolutely appreciate your concern

by sandy craine (May 6)

Judith.... have you been offered another TKI? One that does not have PE as a side effect such as bosutinib, nilotinib or ponatinib?
Sandy

by Judith (Apr 25)

To Darley
Further to my comments in February regarding dasatinib. I came of the tablets for 7 weeks and it was wonderful to feel so normal and healthy. In March I saw my doctor and was given 3
Category: Uncategorised

Replies: 2

Last updated: 7 May 2016
MartinZA on 19 April 2016

Category: Treating CML

Replies: 4

Last updated: 6 May 2016

Some questions on responses and side effects
by MartinZA (May 6)

Hi David

Thank you so much for the kind words and support. It is as you say, and we are so fortunate to have this site to help us - just knowing that there are many more of us "out

by David Fitz (Apr 20)

Hi Martin,
Something you said in your reply struck a chord with me... "I am sure that as time goes on I will think much less about CML".
You're absolutely right in that it is very much

by MartinZA (Apr 20)

Hi Nigel
Thank you so much for taking the time and trouble to write me such a comprehensive reply. Before seeing your message, I had actually edited my thread as I thought it was too long,

by nigel (Apr 19)

Hi Martin

Welcome to the wide and varied world of CML, I mean this in the sense that there seem to be so many pieces of advice, some of which seem to conflict and many of which do not reflect
Category: Treating CML

Replies: 4

Last updated: 6 May 2016
Lynette on 3 May 2016

Category: Uncategorised

Replies: 4

Last updated: 6 May 2016

Anxiety
by MartinZA (May 6)

Hi Lynette

I'm pleased you started this thread because it is something that I've had to deal with too - I tell people that my CML is mostly fought in my head, as I'm fortunate

by darley (May 4)

Doesn't worry me at all. I don't see why it should. a test is merely confirmation of a fact that already exists. As a principle I don't worry about what i can't control and effect. I

by Olivia (May 4)

I think we all - or at least most of us - feel some apprehension when the check-up is approaching. I do, even after nearly seven years of good progress, and I can honestly say that I don't

by Ben K (May 4)

Hi Lynette,

I am completely new to this as I have been recently diagnosed. There are so many unknowns it seems that if you try to manage them all you end up a bit messy. I am
Category: Uncategorised

Replies: 4

Last updated: 6 May 2016
Ben K on 4 May 2016

Category: Side effects

Replies: 1

Last updated: 5 May 2016

Nilotinib and Lipase
by sandy craine (May 5)

Hi Ben and welcome to this forum. Nilotinib can cause elevated seem lipase, but unless you have had a previous history of pancreatitis or are suffering abdominal symptoms then it is most likely that

by Ben K (May 4)

Hi - I am Ben and am a 50 year ex-Pom living in Australia - there doesn't seem to be a support group like this in Oz so I decided to hang out here - hope that's OK!
I was diagnosed in March
Category: Side effects

Replies: 1

Last updated: 5 May 2016
2waterdogs on 29 April 2016

Category: Treating CML

Replies: 1

Last updated: 30 April 2016

Tasigna
by sandy craine (Apr 30)

Hi Pat and welcome to this forum. This is really early days for you.... only day 4 on therapy, so it is not surprising that you feel you are still in denial about the whole thing. I think I can say

by 2waterdogs (Apr 29)

Hi!
Brand new here...Just diagnosed 3 wks ago. I'm just starting Tasigna (4 days ago) and I'm wondering how long till we see results that (hopefully) show it is working.
Category: Treating CML

Replies: 1

Last updated: 30 April 2016
blueyes74 on 27 April 2016

Category: Blood tests

Replies: 4

Last updated: 30 April 2016

BCR-ABL test results
by markmcd (Apr 30)

I'm in East Cheshire and am advised to allow five weeks lead time for getting the results back to the consultant after giving a blood sample. My tests are done at Manchester Royal Infirmary.

by blueyes74 (Apr 29)

I had blood taken on the 1st of March and the results were ready on the 10th. The delay was with Hammersmith from what North Middx have told me. It's the second time in a row

by darley (Apr 28)

I don't really know how long they take to be available nowadays. I just pick them up once a month when I check in at the hospital. So that does obviously mean they're available

by David Fitz (Apr 28)

Mine tend to take about 3-4 weeks, sometimes a little quicker. That's from Barts.
Quicker is always nicer. Do you know where the bottleneck is? i.e. has the lab report been done and the results
Category: Blood tests

Replies: 4

Last updated: 30 April 2016
hyderabadindia on 27 April 2016

Category: About CML

Replies: 1

Last updated: 29 April 2016

my wife test reports
by sandy craine (Apr 29)

Hi, it is difficult to interpret this report. It seems the report says that there is no major molecular response but then goes on to say there are "no fusion transcripts - (Bcr-Abl1 )- detected

by hyderabadindia (Apr 27)

dear madam,
my wife recently cml on 20-01-2016.
she was on imatinib 400mg daily.
on 20-04-2016 sampled PCR test report .
we cannot understand the report please explain.
bone marrow
Category: About CML

Replies: 1

Last updated: 29 April 2016
sandy craine on 27 April 2016

Category: Uncategorised

Replies: 0

Last updated: 27 April 2016

2016 International CML Foundation Prize winner - Associate Professor Susan Branford
by sandy craine (Apr 27)

2016 iCMLf Prize is awarded to Associate Professor Susan Branford (Adelaide). The iCMLf Prize complements the ‘Rowley Prize’ and the ‘Goldman Prize’ by
Category: Uncategorised

Replies: 0

Last updated: 27 April 2016
Kazzam on 26 April 2016

Category: Uncategorised

Replies: 3

Last updated: 26 April 2016

Sun and nilotinib
by David Fitz (Apr 26)

I'm on dasatinib, but definitely more sensitive to sun than I was before CML. I burn in April weather (OK, not this April - it snowed in London today!!) but I remember getting really badly

by Kazzam (Apr 26)

Thank you, I normally use factor 50, will see how i get on and can always seek out the shade. I am in Aberdeen, I have noticed that when my hands get cold they take ages to warm up again.

by Olivia (Apr 26)

Yes, I am definitely more sensitive to sunburn - though I am on imatinib. As I live in Scotland, it's not too much of a problem, though!
Olivia

by Kazzam (Apr 26)

Hi,
I was diagnosed 29 January this year been on nilotinib with no side effects. when I mentioned to my consultant last appointment that I was going on holiday, she said I might notice that my skin
Category: Uncategorised

Replies: 3

Last updated: 26 April 2016
khskel on 25 March 2016

Category: Getting help

Replies: 2

Last updated: 21 April 2016

Newbie
by sandy craine (Apr 21)

Hi and welcome to this forum,
Can you explain why you are having a venesection ' to see what that does'? Do you mean what it does to the CML? Like Darley I am interested to hear where you

by darley (Mar 27)

Hi and welcome. Are you in the UK?

by khskel (Mar 25)

Hi Everyone,
Diagnosed just over 2 weeks ago so still got a lot to learn. I'm scheduled to have a venesection to see what that does. I'm also a Type 1 diabetic and have ulcerative colitis.
Category: Getting help

Replies: 2

Last updated: 21 April 2016
BillyW on 19 April 2016

Category: Side effects

Replies: 4

Last updated: 21 April 2016

Sore feet, numbing of toes, toes turning white and aching calves
by sandy craine (Apr 21)

Hi Billy,
It seems from what you say that you are suffering from a side effect common to most TKIs... muscle cramps, stiffness etc. I, and I think a few others, have used supplements to good effect

by BillyW (Apr 20)

David forgot to mention these symptoms started when I was on NILOTINIB

Billy

by BillyW (Apr 20)

Hi David,
Thanks for replying. When I am resting my feet at times feel numb and cold. I have done stretching, my daughter is a sports injury therapist and I have been to a private osteopath and

by David Fitz (Apr 20)

Hi Billy,
That doesn't sound nice at all. I'm on dasatinib, and have found since I started I have somewhat ankles and calves. It feels like strong stiffness and I cramp up easily. I've
Category: Side effects

Replies: 4

Last updated: 21 April 2016