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sandy craine on 12 June 2020

Category: Treating CML

Replies: 3

Last updated: 26 June 2020

PinnediCMLf 4 Webinars for June/July - CML during the COVID-19 crisis
by sandy craine (Jun 26)

For details of one of the next iCMLF webinars on July 2nd and how you can access it see below:
On July 2nd Professor Gianantonio Rosti will be sharing his experience and perspectives.
Management

by sandy craine (Jun 25)

Hi Justine,
Try logging on to iCMLf website- I think they are probably available.
http://icmlf.org
Sandy

by Justine (Jun 24)

Hi Sandy, I missed today's, are the webinars being recorded and if so how do we access it? Thanks

by sandy craine (Jun 12)

The International CML Foundation is holding a series of four webinars focused on the care of people with CML during the COVID-19 crisis.
Beginning in late June, for four weeks, we will be hosting
Category: Treating CML

Replies: 3

Last updated: 26 June 2020
sandy craine on 14 April 2020

Category: About CML

Replies: 1

Last updated: 29 April 2020

PinnedExpert Opinion from the NCRI CML Subgroup, updated 23rd March 2020
by sandy craine (Apr 29)

EHA: Recommendations for specific hematologic malignancies
https://ehaweb.org/covid-19/covid-19-recommendations/recommendations-for-specific-hematologic-malignancies/
CML, TKI treatment and COVID-19

by sandy craine (Apr 14)

The latest UK government updates are listed here:
https://www.nhs.uk/conditions/coronavirus-covid-19/ and https://www.gov.uk/government/publications/covid-19/guidance
According to the above
Category: About CML

Replies: 1

Last updated: 29 April 2020
Sheila Clapson on 9 July 2020

Category: Uncategorised

Replies: 8

Last updated: 10 July 2020

Nilotinib
by alexmcpee (Jul 10)

Hi Sheila,
I have been on 600mg Nilotinib for 26 months. I take my morning dose at 8am and 8pm. I find this is the best time that doesn’t really interfere with my life too much. This means I

by Felix (Jul 10)

Hi, I have learnt so much from this site it's a godsend .I Thought Imatinib works the same as Nilotinib So usually Dasatinib is used because it strikes differently ,but check out older posts to

by Sally Martin (Jul 10)

Thanks Sheila, I had mild nausea after taking imatinib for the first three months of taking it but then it disappeared. I quite often have an unsettled stomach but otherwise all good except that my

by Sally Martin (Jul 10)

Thanks Denise, I will ask my haematologist that question, as he hasn’t explained about the fasting. Has dasatinib worked well for you?
Category: Uncategorised

Replies: 8

Last updated: 10 July 2020
AlastairC on 6 October 2017

Category: Treating CML

Replies: 112

Last updated: 9 July 2020

Imatinib Dose Reduction Starts
by andycat (Jul 9)

Why would you like to get off your meds. you have no side affects, Didn't your doctor know you were going to reduce the dose?
Imatinib seems to help me + has kept me clear for

by AlastairC (Jul 8)

Hi Ray, thanks for the info. If you are having to change test labs please read the page on this link.
Important to try to get comparability of the results of the two labs on the International Scale

by Ray Sell (Jul 7)

AlastairC. 6 months ago BCR ABL .350
3 months ago BCR ABL .250
New labs Aug 27 Mines going the right
way A real snails pace was lower until lab change then

by AlastairC (Jul 7)

Ray where is your BCR-ABL? If you are not in MMR (<0.1%) then I think a change is worth looking at.
Category: Treating CML

Replies: 112

Last updated: 9 July 2020
Karthikeyan on 4 July 2020

Category: Uncategorised

Replies: 2

Last updated: 9 July 2020

Generic dasatinib cost
by Karthikeyan (Jul 9)

Hi kruba, are you from tamil nadu.

by Krupa (Jul 9)

My name is Krupa and I am 34 years old. I am a CML patient from last 3 years. I am currently taking Sprycel's Dasatinib 100 mg since Imatinib stopped working. Can you please tell me how can I

by Karthikeyan (Jul 4)

Hello all, as of now there are four pharmas are producing dasatinib in india. Shilpa medicare, Dr.reddys, nacto and hetero drugs. All have patient assistance program.approximately all pharma provide
Category: Uncategorised

Replies: 2

Last updated: 9 July 2020
Karthikeyan on 7 July 2020

Category: Uncategorised

Replies: 3

Last updated: 9 July 2020

To scuba about dasatinib and food
by SorubhMaggo (Jul 9)

I had been on Dasatinib 100mg for close to 4 years now and I had been taking all sorts of fruits and food inclusive of citrus lemon or oranges.
However, as per instructions from BMS it is notified

by scuba (Jul 9)

If by sour you mean "fermented" foods, I have not learned of any evidence that "sour" foods should be avoided while taking dasatinib.
In fact, I regularly eat yougurt, Natto (

by David Fitz (Jul 7)

Nilotinib has a half-life of around 17 hours, so the following shows you how much of the drug is in your system over time. You will need roughly 5 days for it to be virtually eradicated from your

by Karthikeyan (Jul 7)

Hi scuba, today i started to take dasatinib 100 mg. my questions
How long nilotinib takes to completely washout from the system
Taking citrus fruits?
Nurses told me not to take sour fruits and
Category: Uncategorised

Replies: 3

Last updated: 9 July 2020
Libby on 7 July 2020

Category: Side effects

Replies: 1

Last updated: 8 July 2020

Bosutinib side effects
by Diane CW (Jul 8)

Hi Libby
I have been taking Bosutinib for almost two years now. I can’t say I’ve suffered the same side effects as you but it seems for me that every few weeks I can feel quite nauseous

by Libby (Jul 7)

I've been on bosutinib for 16 months. I get on well with it, but have a couple of issues that I wonder if anyone else has. firstly I have a persistent cough in the mornings, which
Category: Side effects

Replies: 1

Last updated: 8 July 2020
bendicco on 10 June 2020

Category: Treating CML

Replies: 8

Last updated: 7 July 2020

CBD
by Crfharris (Jul 7)

Thanks for the information. Once again, it’s so encouraging to hear from others who have been on imatinib for such a long period of time. This site has been so helpful for me.

by andycat (Jul 7)

hello,
I have some pain in my left leg as well, I take imatinib 200 mg a day for cml 14 yrs. this month! So a lot to be grateful for but we really could have done without

by Crfharris (Jun 15)

Olivia,
Thank you for sharing that with me. My pain is also at night. Still just one leg (left also) and arms are fine.
This forum is so helpful . Thanks to everyone who contributes.

by Olivia (Jun 15)

I have been on imatinib for over 10 years now, and I certainly get pains in one leg. It's usually the left leg, but some days (I say days, but it's much more common and annoying in the
Category: Treating CML

Replies: 8

Last updated: 7 July 2020
nicolaclubb on 4 July 2020

Category: About CML

Replies: 5

Last updated: 6 July 2020

Mutations and treatment free
by sandy craine (Jul 6)

Hi,
You seem to have responsive disease shown by a a good response to TKI therapy - i.e nilotinib and now ponatinib, so I am puzzled by your consultant saying you have aggressive disease. Am I right

by Nimbus2 (Jul 6)

Hello
I came across an opinion on this matter here:
"Patients who develop imatinib resistance with kinase domain mutations are rarely candidates for TFR."
You will need to read in full.

by alexmcpee (Jul 5)

Hi Nicola,
Wow gosh what a journey you’ve had. I too am on Nilotinib 300mg twice daily and have been for 2 years currently at around 0.1% but not yet broken the MMR barrier. I have had

by nicolaclubb (Jul 5)

Hi Alex. Thanks for your reply.
I was DX April 19’ in accelerated phase. After 6 weeks in hospital I was put on Nilotinib 300mg twice a day. BCR went down supper quick. I hit 0.0003 within 3
Category: About CML

Replies: 5

Last updated: 6 July 2020
alexmcpee on 22 May 2020

Category: Uncategorised

Replies: 61

Last updated: 6 July 2020

Still no MMR at 24 months Nilotinib
by argearge (Jul 6)

Thank you, I will see about 3 months at the next check up. What is the risk about PAH ?
If you have MR4 for more then 5 years, are you not in TFR yet ?
Does somebody have experience with

by kat73 (Jul 5)

argearge - I've come in on the tail end of this, but I hear your plea. It took me 22 months to reach MMR back in 2009. I have been MR4 or better for about 5 years, so don't over-

by alexmcpee (Jul 3)

Yeah I suffer from anxiety too and mental OCD traits so I have to understand everything and fix everything and if I can’t I am hopeless.
Lets hope that either A we get lower numbers or B have

by argearge (Jul 2)

My Doctor says the same aproximately.
He says it depends on the biological processes in your body ...
The problem is, beause I have also asperger, I want to know everything about the disease ...
Category: Uncategorised

Replies: 61

Last updated: 6 July 2020
sandy craine on 1 July 2020

Category: Uncategorised

Replies: 12

Last updated: 5 July 2020

Sorry to go on about Vit D3 levels and immunity but......!
by sandy craine (Jul 5)

Hi Diane,
Vits/minerals are food supplements so most are best taken with a meal. I take all my days supply with breakfast. It's a good idea to get your D3 level tested.
Sandy

by chrissie (Jul 5)

No but I will ask my haem on our next phone appt in 2 weeks.
best
Chrissie

by Diane CW (Jul 4)

Hi Sandy
No I don’t know what my D3 level is at the moment, I am going to ask for it to be tested at my next blood test next month.
I am on Bosutinib and it created problems with my liver at

by sandy craine (Jul 4)

Wow Chrissie... that's impressive whether it's a coincidence or not! Do you know your previous D3 level?
Sandy
Category: Uncategorised

Replies: 12

Last updated: 5 July 2020
Vikram on 28 June 2020

Category: Uncategorised

Replies: 4

Last updated: 4 July 2020

Difference???
by Vikram (Jul 4)

One more question (Only information purpose)
After 3 years diagnose
1780 copies of M-BCR-ABL gene /ug RNA
(Gene copies / ABL Gene copies) :0.25 %
This report means???
DRUG NOT WORKING GOOD???
MY

by Vikram (Jul 4)

M-BCR-ABL.. AND m-bcr-abl
Which one is more dangerous??
M-BCR-ABL (ONLY MENTIONS IN REPORT)

by Vikram (Jun 30)

Thanks for reply...
M - BCR-ABL (Only mentions).......

by RC Kirk (Jun 29)

Yes, there is a difference.
Abstract

The BCR-ABL hybrid gene, the main product of the t(9;22)(q34;q11) translocation, is found in the leukaemic clone of at least 95% of CML patients. The fusion
Category: Uncategorised

Replies: 4

Last updated: 4 July 2020
Karthikeyan on 22 May 2020

Category: Uncategorised

Replies: 26

Last updated: 4 July 2020

Generic Dasatinib in india
by Vikram (Jul 4)

Karthikeyan
Thanks for reply...

by Karthikeyan (Jul 4)

Hi ontasigna,
Could you share tasigna cost details.

by Karthikeyan (Jul 4)

Vijay Kumar,. How much you spent for nilotinib, while you were on nilotinib.

by Karthikeyan (Jul 4)

Hello Vijay Kumar,. From which brand you got 600 mg imatinib for $18. Your information may help others.
Category: Uncategorised

Replies: 26

Last updated: 4 July 2020
Karthikeyan on 3 July 2020

Category: Uncategorised

Replies: 0

Last updated: 3 July 2020

Switched to dasatinib from nilotinib
by Karthikeyan (Jul 3)

Hello all,i just switched to 100 mg dasatinib per day.prior i took nilotinib 400 mg per day.Though I'm in mmr, my doctor want to put me in 100 mg dasatinib at least for the initial months.im going
Category: Uncategorised

Replies: 0

Last updated: 3 July 2020
Maggi 813 on 1 July 2020

Category: Treating CML

Replies: 3

Last updated: 2 July 2020

Lack of response on Nilotinib
by alexmcpee (Jul 2)

You’ve probably already been asked this question by your doc and presume your adherence to the strict 12 hour gap between meds on Nilotinib. And also missing no doses? Also are you on 600mg or

by Maggi 813 (Jul 1)

Thank you for your reply. I was having extremely bad bone pain on imatanib and not really responding. When I went on to Nilotinib, my response was very quick, although I was having bad side effects

by ColoradoGuy (Jul 1)

If I understood your post correctly and you were at 0.05% (MMR) and have gone to >6.0% then it is a good idea to switch as there may be a mutation that another TKI would do better with.

by Maggi 813 (Jul 1)

I saw my haematologist yesterday and was told my BCR ABL result had risen from 0.05 to 6+ in 3 months. I’m a bit concerned as he is changing my TKI to BOSUTINIB. This will be my third TKI as I
Category: Treating CML

Replies: 3

Last updated: 2 July 2020
Alaina on 1 July 2020

Category: Uncategorised

Replies: 6

Last updated: 2 July 2020

Sprycel
by Alaina (Jul 2)

Amazing. What year did you get diagnosed with CML? And how many months (after being diagnosed) did you start Sprycel at 20mg?

by scuba (Jul 2)

Any PCR < 0.01% is indistinguishable statistically from undetected. You are in a great place.
At diagnosis I was in early accelerated phase (high blasts) and was started on 400 mg Imatinib

by Alaina (Jul 1)

The last one was reported as "<0.003%". That was drawn beginning of May. I had another PCR drawn at MDA on June the 25th and am waiting for those results.
Scuba, is Sprycel the only TKI you have

by scuba (Jul 1)

I don't know of any data showing response vs age / and dose.
What is your PCR level currently?
Category: Uncategorised

Replies: 6

Last updated: 2 July 2020
cmljax on 18 June 2020

Category: Uncategorised

Replies: 8

Last updated: 27 June 2020

Taking the TFR Plunge
by cmljax (Jun 27)

Hi Sandy:
I reduced dose 3 times in 2017 from 600 mg/day to 150 mg/day. Since I was already at this very low dose, I just stopped.

by sandy craine (Jun 23)

Wishing you every success in your trial for TFR. Did you decide to just stop rather than try a period of dose reduction?
Sandy

by VickyK. (Jun 19)

Wishing you the best of luck in your TFR journey!
Vicky

by Chuckster (Jun 19)

All the best for a successful TFR!
Category: Uncategorised

Replies: 8

Last updated: 27 June 2020
ipmaki on 29 April 2019

Category: Treating CML

Replies: 62

Last updated: 23 June 2020

Sprycel - Lack of Response
by ColoradoGuy (Jun 23)

I wanted to update this thread as well. I finally snuck just under MMR (0.084%). It has been 33 months since diagnosis and I did not reach MMR while on Sprycel (just to provide a

by Trevorp93 (May 29)

Hi everyone!
I wanted to say I enjoyed reading everyone’s post about the experience they are going though. It makes me feel less alone with my cml that other people are have the same

by alexmcpee (May 28)

Hi mate,
I am 24 months into treatment on Nilotinib. I was diagnosed at 38. Like you guys I have small children. @ 18 months I was at 0.118% and now at 24 months I am at 0.164%. My 1st uptick and

by ipmaki (Apr 1)

ColoradoGuy, thanks for providing an update. I definitely agree with you. It would be nice to have that little adjustment downward instead of upward even though they are so close and probably within
Category: Treating CML

Replies: 62

Last updated: 23 June 2020
vonnie on 23 June 2020

Category: Uncategorised

Replies: 2

Last updated: 23 June 2020

Covid
by vonnie (Jun 23)

Thanks

by sandy craine (Jun 23)

I am not sure I have had symptoms or not. Generally I have felt fine, but had a few days of feeling a little 'strange' as did my partner .. only lasted 36 hrs for both of us and it could

by vonnie (Jun 23)

Hi just wondering anybody unlucky enough to have had covid 19 and what have the effects been like
Category: Uncategorised

Replies: 2

Last updated: 23 June 2020
nazarm4 on 18 June 2020

Category: Children & young people

Replies: 1

Last updated: 23 June 2020

Low phosphorus
by sandy craine (Jun 23)

Hi, there could be a dietary reason for your low phosphate level. Try a little research, such as here: https://patient.info/doctor/hypophosphataemia
Finding out what your Vit D and/or magnesium

by nazarm4 (Jun 18)

Hope every one doing well.my phosphorus always low .tried it all . Including I V . And prescription k-pho’s and still low .any ideas .thanks .
Category: Children & young people

Replies: 1

Last updated: 23 June 2020