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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
David787 on 3 June 2024

Category: Children & young people

Replies: 7

Last updated: 12 June 2024

Undetectable
by Buzzm1 (Jun 12)

David787, after one year of undetected, if your onc/hema has not begun to reduce your dosage, you might want to begin to gradually reduce your dosage on your own. Taking a whole Imatinib 400mg

by David787 (Jun 4)

Many thanks indeed for the very useful reply Alistair. I shall watch the video and read your post on your battle. Good to know that you are now stable on 200 mg. Something to strive for!
I have been

by David787 (Jun 4)

Thanks for your reply; most interesting. I have been on Imatinib for nearly for years now.
Hopefully they will reduce my dose soon.
David

by David787 (Jun 4)

Hello Fitz,
Many thanks for your reply. I have been on the Imatinib for nearly 4 years now.
David
Category: Children & young people

Replies: 7

Last updated: 12 June 2024
Taper11 on 17 October 2023

Category: Treating CML

Replies: 12

Last updated: 2 June 2024

When to switch to asciminib
by 3oK@ (Jun 2)

It seems that more serious side effects of Asciminib are expected at 200-400 mg pd which is used for T315I mutation, while the standard dose for cp is 80 mg pd.
https://www.ncbi.nlm.nih.gov/pmc/

by 3oK@ (May 24)

Hi and thanks for sharing the dose info and good news. I’m seeing my doc in June and will ask him to switch as I don’t tolerate Nilotinib well, started experiencing heart racing and thumping after

by healthyhabits (May 23)

Thank you! Doing a little jig!

by David Fitz (May 23)

That’s fantastic! You must celebrate.
David.
Category: Treating CML

Replies: 12

Last updated: 2 June 2024
alexmcpee on 3 May 2024

Category: Blood tests

Replies: 5

Last updated: 30 May 2024

Latest BCR results
by Roza (May 30)

Thanks for sharing Alex and it's great news. Stress eats into our immune system and it's not something we deal with well, particularly in Western society. For those of us who are in a slower

by kat73 (May 27)

I couldn't agree with you more, on all your well-made points and observations. I took that long to get to where you are. Over the years I've wondered many times "why?" I feel it was stress (of

by sue. R (May 7)

I am so glad you mention the mental bit. This treatment has gotten me real depress I think, since I take two pills in the morning and I get nauseous and headache all I can do is sleep. Yet I am

by alexmcpee (May 4)

Hi Sue, thank you yes just above the detection line but very very happy with such a large drop.
Plateaus are very common 2.5 years to get to 0.1 for me. It took 1.5 years to go from about where you
Category: Blood tests

Replies: 5

Last updated: 30 May 2024
MartinZA on 25 January 2024

Category: Treating CML

Replies: 14

Last updated: 28 May 2024

Latest update on my TFR attempt
by David Fitz (May 28)

Asciminib does seem quite promising, and there are high hopes for it. But remember, there were very high hopes for ponatinib too and there are very good reasons we don’t see that many patients

by kat73 (May 27)

This is all great news, Martin! I'm getting antsy to try asciminib, myself. If I could find someone to tell me it makes the puffy eyes go away, I'd be there in a shot.

by MartinZA (May 21)

Thanks so much Buzz, and for all the help and advice along the way. Your experience has been incredibly valuable!

by MartinZA (May 21)

Forgot to mention that, if I have to restart some day, it will definitely be asciminib. According to my doctor it shows a lot of success with minimal side effects.
Category: Treating CML

Replies: 14

Last updated: 28 May 2024
johnw1001 on 5 March 2024

Category: Side effects

Replies: 19

Last updated: 26 May 2024

Long term effects of tki's
by Buzzm1 (May 26)

Sage, six months on the alternating dosage is sufficient. The interim step isn't needed.
Just for the record, when did you reduce to Sprycel 50mg, then to 40mg, and then when did you begin the

by SageH (May 26)

What do you consider a long period of time? Do you think 6 months is sufficient? I was diagnosed in 6/2021 and was put on 100 mg of Sprycel. My doctor reduced me to 50 mg, and then after much

by Buzzm1 (May 25)

Sage, I just came across your post. If you have been undetected on the alternating dosage for a period of time, don't hesitate to further reduce your dosage to Sprycel 20mg.
Buzz

by SageH (May 18)

Buzz -
Thank you for this note. I am of the same mindset. I gradually started reducing my Sprycel dosage and am now taking 20 mg on day, and 40 mgs the next. I remain undetected, and am now
Category: Side effects

Replies: 19

Last updated: 26 May 2024
cmljax on 11 May 2024

Category: Other conditions

Replies: 4

Last updated: 18 May 2024

GERD and Sprycel
by SageH (May 18)

One thing that seemed to help me a lot was raising the top side of my bed by about 4", so my head is elevated when I sleep. It is barely noticeable to look at the bed and you don't really notice it

by David Fitz (May 11)

I’m really not sure on availability. Best to ask your pharmacist I guess. It’s quite a niche product.
My GERD symptoms were present before I had CML. Reflux mainly, which was managed with PPIs, but

by cmljax (May 11)

David:

Thanks for all the info. There's a lot for me to investigate. Just a couple of follow up questions:

1. Were your Gerd symptoms like mine - I have very little heartburn. Mostly

by David Fitz (May 11)

Hi there,
I had your exact situation some years ago. I solved it surgically, with a procedure called a Nissen fundoplication. It totally solved my issue and I have never had any recurrence of GERD
Category: Other conditions

Replies: 4

Last updated: 18 May 2024
RN on 14 May 2024

Category: Blood tests

Replies: 5

Last updated: 15 May 2024

Bouncing around MMR
by RN (May 15)

Thank you Kamil and Alex. Appreciate your help. This definitely helps my mental state a lot.

by alexmcpee (May 15)

You’re totally fine. I and many of us (especially the younger folk) seem to bounce around that area. I did for 2.5 years before reaching 0.07 MMR.
It only affects your mental state and nothing more

by Kamil (May 15)

Hello,

We are at a similar position, diagnosed 2 years ago. Lowest reading was 3 months ago at 21st month mark at 0.011, and the latest result bounce back to 0.069.
Similarly to you, we

by RN (May 14)

Thank you Buzz!! Feel much better now.
Category: Blood tests

Replies: 5

Last updated: 15 May 2024
k.Tam on 23 April 2024

Category: Blood tests

Replies: 23

Last updated: 11 May 2024

About Treatment Free
by scuba (May 11)

The solution to cancer lies in genetics of our immune system. Cancer occurrence is an immune system failure.

We like to think of ourselves as 'machines' with parts breaking and in need of

by JoeP (May 11)

Allistair’s video is awesome. I especially like the visual presented that MR4 is similar to less than a grain of sand.
I do want to amend my response to what Scuba said about the immune system

by vlacer (May 9)

Alastair,

Thanks, great video!!

by JoeP (May 9)

My previous onco once referred to CML as a stupid cancer. His logic being that CML only has one genetic aberration. The acute forms are much more complicated and can involve lots of different
Category: Blood tests

Replies: 23

Last updated: 11 May 2024
scuba on 26 April 2024

Category: Uncategorised

Replies: 2

Last updated: 7 May 2024

Vitamin D regulates microbiome-dependent cancer immunity
by scuba (May 7)

I take 5,000 IU's per day in summer and 7500 (5/10 alternating days) in winter. This protocol barely keeps my vitamin D level near 70 ng/ml which is the "sweet" spot for maximum benefit (in regard

by hannibellemo (Apr 30)

Scuba, I've never had my D levels checked, but I have taken a supplement ever since dx on the recommendation of my original hem/onc. I think he recommended 1,000 IU daily and based on my theory of "

by scuba (Apr 26)

Just published study reinforces the connection between adequate vitamin D levels and anti-cancer properties
https://www.science.org/doi/10.1126/science.adh7954
Vitamin D regulates microbiome-
Category: Uncategorised

Replies: 2

Last updated: 7 May 2024
Gian P on 1 May 2024

Category: Blood tests

Replies: 3

Last updated: 2 May 2024

CBR Up and Down! Very Frustrating...
by Gian P (May 2)

Thank you Pat,

i finally spoke to my Doctor and she also told me that in the scheme of things my test is not bad, could be better but at this point we have to continue monitoring the results,

by hannibellemo (May 2)

Hi, Gian! You started on 800mg Gleevec and your platelets dropped - I'm not surprised, that often happens in the beginning and generally the dosage is dropped (or Gleevec held) until the platelets

by hannibellemo (May 2)

Hi, Gian! You started on 800mg Gleevec and your platelets dropped - I'm not surprised, that often happens in the beginning and generally the dosage is dropped (or Gleevec held) until the platelets

by hannibellemo (May 2)

Hi, Gian! You started on 800mg Gleevec and your platelets dropped - I'm not surprised, that often happens in the beginning and generally the dosage is dropped (or Gleevec held) until the platelets
Category: Blood tests

Replies: 3

Last updated: 2 May 2024
Tomeocat on 10 January 2024

Category: Treating CML

Replies: 20

Last updated: 1 May 2024

Specialist in CML + cramps
by sue. R (May 1)

I was first given Spyrcel, hat worked fine and I even was undetected but when the dose was lowered due to Pleural effusion it was detected. Then it was on low dose Bosutinib which was great but

by Tomeocat (May 1)

Hi Sue,

the nausea is what i am worry about. I had it for more than 4 months with the imatinib and I am worry it will be the same with this other drug.

Did you have any side effects when

by sue. R (May 1)

I am now on Nilotinib 400 mg, it been a month now. Terrible headache, nausea and itch.

I was switch from Spyrcel in 2021 due to pleural infusion, to Bosutinib but that affected my liver and

by AlastairC (May 1)

Hi Francesca,
In the very early days (around 2008) I had got to BCR ABL around 0.6% but was very neutropaenic on 400mg Imatinib, so I went to 200mg per day. The BCR ABL level stayed the same for 6
Category: Treating CML

Replies: 20

Last updated: 1 May 2024