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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
Emily on 15 April 2016

Category: Side effects

Replies: 2

Last updated: 15 April 2016

Nilotinib side effects
by Emily (Apr 15)

Hi Sandy,
Thanks so much for your information and encouragement!
Emily

by sandy craine (Apr 15)

Hi Emily,
it is not unusual for clinicians to manage the effects of TKIs by dose reductions in the first few months of therapy, especially in the case of raised liver enzymes. I am sure your body

by Emily (Apr 15)

Hi,
I was diagnosed as CML on Feb 2016 and was started on Nilotinib, 300mg once per day. 3 weeks after that, my liver enzymes level was 5 times above normal. I was asked to stop Nilotinib for 2.5
Category: Side effects

Replies: 2

Last updated: 15 April 2016
Emmawill1 on 13 April 2016

Category: Side effects

Replies: 2

Last updated: 15 April 2016

Nilotinib symptoms - missing a dose
by sandy craine (Apr 15)

Hi.... it is very likely - as David has already said - that it is coincidental that your husband felt these symptoms when he had missed a dose. What is worrying is that he had chest pain and

by David Fitz (Apr 14)

Hi Emma,
It sounds purely coincidental to me. Was it the first time he missed a dose? If so, he might have found that quite stressful in itself which could have lead to him feeling a bit off-colour

by Emmawill1 (Apr 13)

Hi,
My husband has been diagnosed with CML.
He currently takes Nilotinib 300mg x2 a day.
He recently missed his morning dose and just took his evening dose due to time lapse. Later that day he
Category: Side effects

Replies: 2

Last updated: 15 April 2016
cablock69 on 9 April 2016

Category: Treating CML

Replies: 1

Last updated: 9 April 2016

Concerned family member
by sandy craine (Apr 9)

Hi,
I'm sorry to hear your cousin is suffering form what sounds like side effects of therapy. As here doctor has told her she is in remission it is unlikely that it is CML that is causing

by cablock69 (Apr 9)

My cousin has CML. Has been on Sprycel. Blood tests show she is in remission. However, she continues to suffer with excessive fatigue, back spasms, dizziness, inability to fall /
Category: Treating CML

Replies: 1

Last updated: 9 April 2016
GEP on 25 June 2015

Category: Uncategorised

Replies: 77

Last updated: 5 April 2016

New policy for dispensing glivec
by Ginette Baker (Apr 5)

Royal Berkshire Hospital Reading have a 1 month rule, I was dx last June and always have to collect my Glivec every month from Lloyds at the hospital. They can't transfer to Lloyds within

by Ginette Baker (Apr 5)

Royal Berkshire Hospital Reading have this rule, I was dx last June and always have to collect every month from Lloyds at the hospital. They can't transfer to Lloyds within my local GP

by MRB (Feb 9)

Thank you Chrissie for replying to my query. I will ask for the information on 'page two' at my next appointment! It seems strange that the consultants do not willingly supply the more

by chrissie (Feb 7)

Hi Margaret
One problem with PCRs from the Exeter lab seems to be that they are not on IS (International Scale) so difficult to compare with other labs (only 29 are on IS in the UK apparently)
Category: Uncategorised

Replies: 77

Last updated: 5 April 2016
cdw5000 on 4 April 2016

Category: Organising your life

Replies: 0

Last updated: 4 April 2016

Travel Insurance
by cdw5000 (Apr 4)

Hello All,

I previously used to get my travel insurance with an existing provider and CML was excluded; this has come to an end unfortunately. From a search on this forum I found a
Category: Organising your life

Replies: 0

Last updated: 4 April 2016
sandy craine on 4 April 2016

Category: Uncategorised

Replies: 0

Last updated: 4 April 2016

CMLS group- Welcome to 3 new trustees
by sandy craine (Apr 4)

On behalf of the board of CMLSGroup, I would like to welcome Nigel Deekes, David FitzGerald and Karen Adams to our board of trustees. All three are active patient members of this group as well as
Category: Uncategorised

Replies: 0

Last updated: 4 April 2016
sandy craine on 31 March 2016

Category: Uncategorised

Replies: 0

Last updated: 31 March 2016

Charity Football match - Glasgow
by sandy craine (Mar 31)

I posted about this some time ago, but it seems there is still a need for those keen on football to participate to make up 16 players for each side. Info about the dinner is posted on the '
Category: Uncategorised

Replies: 0

Last updated: 31 March 2016