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Vikram on 20 November 2018

Category: Clinical trials

Replies: 164

Last updated: 16 August 2024

PLEASE REPLY
by Vikram (Aug 16)

Last 13 year undetectable....
Sorry 600 mg not Full dose.....
My dose after 2010...600 mg gleevec...
What about CBC....report? Wbc and platelets high.... related CML?[ Increase pcr 0.0077]
Last 13

by David Fitz (Aug 16)

Vikram,
A PCR of 0.007% is a great response. It could increase by 10 times and still be in MMR, which is our main milestone. But 600mg of imatinib is not “full dose”, that’s a high dose. Full dose

by Vikram (Aug 15)

My dose gleevec [imtanib] 600
Dose reduce 600 - 400- 000 - 400 -600 cycle
Stop cycle

400 dose Report undetactable march 2023
Dose reduce 400 to 200....
Six months...later
Current time pcr

by Vikram (Aug 15)

Hii David
Category: Clinical trials

Replies: 164

Last updated: 16 August 2024
DawnD on 17 July 2024

Category: About CML

Replies: 5

Last updated: 10 August 2024

Stopped sprycel
by hannibellemo (Aug 10)

Dawn, were you on a reduced or full dose of Sprycel when you stopped? Our experiences are all so different on these TKIs, I had to laugh when I read that you were no longer constipated. Whereas, I

by DawnD (Aug 9)

Hi , yes we have communicated on the LLS site. Good to hear from you again. Honestly I have felt worse off the Sprycel than on it. My fatigue level has also increased along with the pain. Go figure

by hannibellemo (Aug 9)

Dawn, I wonder if we have communicated on the LLS site. Your question is mine. I stopped nilotinib at the end of April. I developed musculoskeletal pain in early to mid-June (mostly hands and knees

by DawnD (Jul 17)

Thank you David. I am still hoping all will get better.:)
Category: About CML

Replies: 5

Last updated: 10 August 2024
Vikram on 9 August 2024

Category: Blood tests

Replies: 3

Last updated: 10 August 2024

platelets range and wbc high
by Vikram (Aug 10)

M BCR ABL 0.0077
Detected after 14 years.....
Last 13 year undetectable....
Reduce dose 200 mg is resone?
Please reply

by Vikram (Aug 10)

Imtanib 400 dose reduced.....
After reduce 200 mg gliveec....[after 3 month]
cbc report. Rbc wbc and platelets count high?
Please reply .......is dangerous?

by Vikram (Aug 9)

Hemoglobin: 16.2

Total RBC Count : 6.09

Total WBC Count : 14260

Platelet Count: 582000
Blood Indices
P.C.V: 49.2

M.C.V. : 80.8

M.C.H.: 26.7

M.C.H.C

by Vikram (Aug 9)

CBC REPORT
HEMOGLOBIN 16
Total RBC 6.09
Total WBC 14200
Platelet count 580000
Category: Blood tests

Replies: 3

Last updated: 10 August 2024
koralia.pappi on 23 July 2024

Category: Treating CML

Replies: 6

Last updated: 9 August 2024

Nilotinib resistence (?) after TFR attempt
by hannibellemo (Aug 9)

Hi, Koralia.pappi, I was glad to read your post. I attempted TFR after being on nilotinib 150mg qd for 2 years (3 years at CMR). After 3 months my PCR jumped to 0.02%, too high we thought for a

by koralia.pappi (Aug 8)

Hi all,
Here's the update:
jan'24 -> UPCR, Tfr start

feb'24 -> UPCR

mar'24 -> UPCR

29th apr -> 0.04%

25th may -> 0.13%, decide to restart tki

11th june

by koralia.pappi (Jul 27)

Hi all
So... once again, I need to say that this forum is a source of calm... you always help me regain my senses! Plus, there's collective knowledge in here that's available faster than any

by koralia.pappi (Jul 24)

Hi both,
Thank you very much for your encouraging responses!
We anyhow opted to do a series of tests (incl. Biopsy, mutation testing, pcr) so we will have all the data available to understand what'
Category: Treating CML

Replies: 6

Last updated: 9 August 2024
RN on 6 August 2024

Category: Blood tests

Replies: 6

Last updated: 7 August 2024

Upward tick in bcr abl. super concerned.
by RN (Aug 7)

Thank you Scuba. Appreciate your much needed advice. Makes me feel better. I may have to ask my doc to also contact Dr Cortes.

by scuba (Aug 7)

* https://ashpublications.org/blood/article/136/Supplement%201/3/471908/Th...

* https://ashpublications.org/blood/article/138/Supplement%201/3601/479738...
There is evidence lowering dasatinib

by RN (Aug 7)

Thank you Zoran. Appreciate your feedback. Gives me strength to hear from you and other folks.

by 3oK@ (Aug 7)

Okay, last week I had low counts but the doctor advised no change of dose - 80 mg Asciminib. I will do another CBC tomorrow.
Neutrophils 1.1

Platelets 60

WBC 2.4
My BCR dropped from 33
Category: Blood tests

Replies: 6

Last updated: 7 August 2024
Tedro on 8 July 2024

Category: Treating CML

Replies: 4

Last updated: 1 August 2024

doctors?
by scuba (Aug 1)

Dr. Cortes is one of the top Leukemia doctors in the world.

He was (and is) my doctor when he was at M.D. Anderson.

Dr. Cortes is the reason I was able (permitted) to try low dose

by Tedro (Jul 29)

Do you live in Georgia?
Are you VA (Veterans Administration)?
As I transition to more treatment, permit me to come clean.

Dr. Cortes is my doctor.
I felt that I personally wanted to ask the

by DerrickK1995 (Jul 29)

I see Dr. Cortes. He is amazing!!

by David Fitz (Jul 9)

He's a top-level CML specialist. One of the very best.
I was at a CML conference with him a few weeks ago. He is great at explaining complex CML topics to patients. You would be in very safe hands
Category: Treating CML

Replies: 4

Last updated: 1 August 2024
Lydia on 20 July 2024

Category: Side effects

Replies: 6

Last updated: 23 July 2024

Withdrawl Symptoms on half dose Imatinib
by Lydia (Jul 23)

Yes, Alistair, you're right! That's his next move. I will post an update when we eventually get it resolved.

by AlastairC (Jul 23)

Lydia I think the musculo skeletal folks are a good next port of call. I have had some issues with ankles over the years, which a podiatrist diagnosed to the fact that my Achilles tendons were not

by Lydia (Jul 22)

Thanks for your reply, Alistair. There's a lot in that thread of yours. We were fortunate enough to have a chat with Prof Clark at the time they were wanting volunteers for the Destiny trial.

by Lydia (Jul 22)

Thanks for your reply, David. Yes, it's pretty miserable. He's had years of never being far from a toilet on branded Glivec, finding an improvement on generics but now, when he feels so much better
Category: Side effects

Replies: 6

Last updated: 23 July 2024
MomOfCML on 14 July 2024

Category: Blood tests

Replies: 3

Last updated: 15 July 2024

Slow and steady
by MomOfCML (Jul 15)

His adherence to the drug is very good. He has missed one dose in the last year and takes it within a one hour window every day. He is living at home while a student, so Mom has been able to keep a

by David Fitz (Jul 15)

I would agree with your son. Below 0.1% is “optimal” but he is in a downward trajectory, even if slow, and generally anyone below 1% does pretty well. The 0.1% target is a scientific one, not one

by JoeP (Jul 14)

It took me over 5 years to reach MMR. My doc wanted me to switch early on but I resisted as I was afraid the other TKIs had worse side effects. There are papers out there that have studied the

by MomOfCML (Jul 14)

Two years ago, my now 21 year old son was diagnosed with CML. The learning curve has been steep, and two years in, I am still a worried Mom. His progress has been slow but steady. After initially
Category: Blood tests

Replies: 3

Last updated: 15 July 2024
nilotinib on 10 July 2024

Category: Uncategorised

Replies: 2

Last updated: 11 July 2024

Omeprazole
by JoeP (Jul 11)

I took omeprazole for a few months while on Imatinib. I was surprised at how it helped bring my number down real low. I had my lowest reading on Imatinib while on omeprazole. My number went back up

by David Fitz (Jul 10)

The NHS recommends you take it first thing in the morning (on once a day schedule). It can be taken on a full or empty stomach. It doesn’t interact with imatinib, so you can choose when to take your

by nilotinib (Jul 10)

Hello when is the best time to take Omeprazole when on Imatinib. I take my Imatinib with breakfast.
Cheers Keith
Category: Uncategorised

Replies: 2

Last updated: 11 July 2024
SeasonJ on 18 June 2024

Category: Blood tests

Replies: 9

Last updated: 8 July 2024

CML - My fluctuating BCR-ABL/ABL level
by Wstevenson (Jul 8)

Videos and resources look fantastic! Thank you for sharing.

by Wstevenson (Jul 8)

Thank you, David. I read all of the discussion, it made me feel a lot better.

:-) Winnie

by David Fitz (Jul 5)

Those videos are up now - see the post in the orange box at the top :)

by David Fitz (Jul 4)

Hi Winnie,
It’s always a worry when numbers go up, isn’t it? But you are still firmly in MMR.
The difference between 0.041% to 0.049% is statistically negligible, they are basically the same result
Category: Blood tests

Replies: 9

Last updated: 8 July 2024
David Fitz on 5 July 2024

Category: About CML

Replies: 0

Last updated: 5 July 2024

CML Horizons 2024 - videos and presentations now available
by David Fitz (Jul 5)

All the videos and presentations from CML Horizons 2024 are now available. It was a really good conference this year.
https://www.cmladvocates.net/cml-horizons-2024-hybrid-conference-vilnius...
Category: About CML

Replies: 0

Last updated: 5 July 2024
suvankardas on 1 July 2024

Category: Side effects

Replies: 2

Last updated: 2 July 2024

Vague muscle pain
by JoeP (Jul 2)

I was on 400 mg Imatinib for 11 years. I could not imagine being at 800mg. Can you lower it perhaps? Also, are you on a generic? Generics can vary. The therapy that worked best for me while on

by 3oK@ (Jul 1)

Have you tried taking calcium and magnesium?
https://www.oncolink.org/cancer-treatment/oncolink-rx/imatinib-gleevec-r
I was on Imatinib for years and never felt muscle pain.
Why are you on 800

by suvankardas (Jul 1)

Diagnosed in Nov22. Since then on IMATINIV 800 per day. BCR-ABL from 24 to .16 in March 24. Responded well. But can’t coup up with the muscle fatigue/muscle numbness and recently vague pain all over
Category: Side effects

Replies: 2

Last updated: 2 July 2024
vlacer on 26 June 2024

Category: About CML

Replies: 3

Last updated: 29 June 2024

Will COVID affect the BCR-ABL test results?
by JoeP (Jun 29)

Perhaps the immune sys plays a role here. Covid seems to have some correlation to the immune sys and inflammation. That sort of coincides to what you are eluding to vlacer about viruses..

by vlacer (Jun 27)

Buzz, yes it was my first undetected BCR-ABL, I also have a theory that when you get a virus infection the leukemic stem cells including the dormant ones are triggered to divide. Due to medical

by Buzzm1 (Jun 27)

vlacer, in that March, 2024 was your very first undetected BCR-ABL, it isn't at all unusual that a following BCR-ABL might show a slightly positive result.
Buzz

by vlacer (Jun 26)

In March 2024 my BCR-ABL was non-Detectable (0.000%). Now in June 2024 the results are up to 0.004%. I had COVID a week before doing the test. Will COVID affect the test results?

Vlacer
Category: About CML

Replies: 3

Last updated: 29 June 2024
sb22 on 25 January 2024

Category: Side effects

Replies: 20

Last updated: 26 June 2024

Nilotinib
by sb22 (Jun 26)

Hiya I was taking nilotinib when I had the 2 strokes.

I was under a Haematologist. But since 2003.i was taking imatinib then disatinib.then nilotinib now bosutinib.

But when I started

by JoeP (Jun 26)

So you were on Nilotinib when you had the strokes?

I ask because you said you weren’t seeing a hematologist.

Who was writing the script for you?

I assume you had an oncologist.

by sb22 (Jun 26)

I had 2 strokes not heart attacks.the cause was nilotinib.and not seeing a Haematologist for 6 years or monitored by the hospital or GP.

by igennem (Jun 22)

What was the reason of your heart attacks?
Category: Side effects

Replies: 20

Last updated: 26 June 2024
igennem on 22 June 2024

Category: Side effects

Replies: 5

Last updated: 26 June 2024

Nilotinib long term side effects
by sb22 (Jun 26)

I'm glad your being monitored.

Unfortunately I was not I did see a Haematologist for 6 years.wasnt monitored by the hospital org GP.

by sb22 (Jun 26)

I was taking nilotinib for 7 years.i had 2 strokes in 2020 still taking nilotinib for one year after both strokes it was the stroke doctor that said nilotinib was the cause.

It's been on the

by alexmcpee (Jun 26)

Hi
I’ve been on Nilotinib for just over 6 years. Currently MR4.

This very discussion was raised with me at my last consultation and they will be monitoring my cholesterol and diabetes annually

by johnw1001 (Jun 22)

Professor Jane Apperley of Hammersmith Hospital said that Nilotinib was hard on the heart and imatinib hard on the musculo skeletal system;she also said that due to the fasting regime if you are a
Category: Side effects

Replies: 5

Last updated: 26 June 2024
Evie on 13 June 2024

Category: Uncategorised

Replies: 5

Last updated: 23 June 2024

Imatinib accord
by David Fitz (Jun 23)

Hi John,
NICE shows Accord imatinib is about £200 for 30 days supply of 400mg imatinib. Sandoz imatinib is around £1,600 - only a small discount from branded Glivec.
Drug pricing is much more

by johnw1001 (Jun 22)

My haematologist said that the imatinib generic that produces the least side effects is Sandoz-why because it is made by Novartis the manufacturer of the original branded Glivec.If you know your

by MartinZA (Jun 19)

Hi Evie
I have been on three different generic versions of imatinib and I really found Accord intolerable. I had all sorts of stomach problems including cramps, heartburn and indigestion, so I

by Evie (Jun 14)

Thank you for your response.
I will look into this.
Thank you
Category: Uncategorised

Replies: 5

Last updated: 23 June 2024
Mr_T1987 on 5 June 2024

Category: Getting help

Replies: 3

Last updated: 22 June 2024

Arthroscopic surgery
by johnw1001 (Jun 22)

Alistair,

The key issue here I believe is that you were on an anticoagulant and apparently some blood thinners will potentiate imatinib and also imatinib will potentiate the thinner which can

by David Fitz (Jun 9)

Not quite the same, but I had a fairly substantial laparoscopic surgery some years back. I was advised to continue to take my TKI, and it didn’t cause any problem.
David.

by AlastairC (Jun 9)

Hi
I've been on imatinib for over 17 years, currently on 200mg per day. I had a full hip replacement in 2022. I was advised to stop my imatinib a couple of days before the op, and not restart for

by Mr_T1987 (Jun 5)

Afternoon all.
It's been a while since I've been on here so I hope you're all keeping well.
Just a bit of random question for you all.
I'm due to have arthroscopic surgery on my knee in the next few
Category: Getting help

Replies: 3

Last updated: 22 June 2024
David Fitz on 17 June 2024

Category: Getting help

Replies: 0

Last updated: 17 June 2024

UK CML Patient Day - your input needed!
by David Fitz (Jun 17)

PLEASE COMPLETE THIS SHORT SURVEY. IT TAKES JUST A COUPLE OF MINUTES.
We are assessing the feasibility of running a UK CML Patient Day sometime in 2025, and need your input to help us plan this
Category: Getting help

Replies: 0

Last updated: 17 June 2024
Fatty Fish on 23 April 2024

Category: Organising your life

Replies: 8

Last updated: 12 June 2024

Living with CML
by Suboptimal_ (Jun 12)

Hi Fatty Fish, I just watched your video. PPMS on top of CML - I can hardly believe how unlucky you’ve been. Especially with such extreme cramping, I don’t know if I could have stuck through that as

by Suboptimal_ (Jun 12)

(Duplicate post)

by hannibellemo (Apr 30)

Thanks, Buzz! As you know, my CML raised its ugly head fairly quickly whenever I had to stop due to pleural effusion on Sprycel. I can't say I'm particularly hopeful, but I will never know if I don'

by Fatty Fish (Apr 28)

Hi Pat,
I'm glad you enjoyed the CML video and the others, hopefully.

I'm due to have my blood tested again soon for the CML. Currently, my white blood cell count is still just above the
Category: Organising your life

Replies: 8

Last updated: 12 June 2024
Suboptimal_ on 6 June 2024

Category: Side effects

Replies: 3

Last updated: 12 June 2024

Bladder irritation/infection with TKIs?
by Suboptimal_ (Jun 12)

Thanks for the response - what a great feature!

by Nimbus2 (Jun 12)

Duplicated entry deleted.

by Nimbus2 (Jun 12)

Try the free asktheexpert service, see:
https://cmlsupport.org.uk/asktheexpert
I recently asked about urinary retention and got an almost immediate response from a professor.

by Suboptimal_ (Jun 6)

Hi all,
I was diagnosed with chronic phase Ph+ CML a few weeks ago. I’ve only been on imatinib for less than a week, but am now experiencing a flare-up of a chronic UTI that was very much under
Category: Side effects

Replies: 3

Last updated: 12 June 2024