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ckquinn on 31 August 2020

Category: Side effects

Replies: 4

Last updated: 22 October 2025

Breaking teeth
by barry33 (Oct 22)

I’ve had more dental issues since starting treatment too—my dentist said the meds can weaken enamel. I switched to a softer toothbrush and try to floss more carefully now.

by scuba (Jan 12)

Vitamin D3 + vitamin K2 = teeth strength like steel.

https://alivenhealthy.com/2021/03/02/vitamin-d3-and-k2-how-to-reminerali...

by saseder (Jan 12)

Maybe you lack some vitamins? Calcium?

by Nimbus2 (Aug 31)

I initially adhered to the mantra "you cannot blame imatinib for all of your ills". However, having recently changed from imatinib to dasatinib, I can see that imatinib was responsible for
Category: Side effects

Replies: 4

Last updated: 22 October 2025
suvankardas on 11 October 2025

Category: Blood tests

Replies: 2

Last updated: 21 October 2025

Sudden rise in BCR ABL IS
by suvankardas (Oct 21)

It’s a slight change in percentage according to my doc. He has suggested for a MUTATION ANALYSIS. Report is awaited.

by David Fitz (Oct 13)

You don't need to be exact with the same time every day, an hour either side of your routine time is not going to make any difference.
Given you've gone from being in MMR to losing MMR, the usual

by suvankardas (Oct 11)

have been doing well until 10th October. The BCR ABL IS which had been
Feb24-,0.15
Oct24- 0.13
Feb25- 0.07
has suddenly increased to 0.93 in October. I don’t remember what have I done wrong during
Category: Blood tests

Replies: 2

Last updated: 21 October 2025
pin on 16 October 2025

Category: Uncategorised

Replies: 11

Last updated: 20 October 2025

How to hold on to my TFR?
by 3oK@ (Oct 20)

You definitely need a prescription. I purchase Besremi 250 mcg pens which are basically syringes with dose dials, so I get 5 doses in each pen. This is ropeginterferon alpha-2b, but there is also 2a

by 3oK@ (Oct 20)

Yes, the tiredness lasted only for the first 3-4 weeks and usually manifested the day after the injection and went on for a day or 2. Then in the 2nd month I got a bit of brain fog which I noticed

by pin (Oct 20)

Do you need a prescription for Interferon? Is it also tablets now? I'm sure it used to be injections back in the day...

by pin (Oct 20)

@ JP Thanks, honestly - this is really helpful advice and this is what I am planning to do, as well as increasing my vitamin D (sunshine) intake :) and no worries about hijacking, I am also really
Category: Uncategorised

Replies: 11

Last updated: 20 October 2025
LouiseS on 19 October 2025

Category: Side effects

Replies: 0

Last updated: 19 October 2025

Stroke as a side effect of Sprycel
by LouiseS (Oct 19)

Hi there

This site was such a source of comfort and knowledge when my husband was diagnosed 8 years ago with CML. He responded very well to Sprycel ( 50 mg) with few side effects and this past
Category: Side effects

Replies: 0

Last updated: 19 October 2025
annsmith on 10 October 2025

Category: Side effects

Replies: 3

Last updated: 15 October 2025

Asciminib
by annsmith (Oct 15)

I started having heart rhythm problems that went away as soon as I quit it. The other side effects I was dealing with although I did end up with a stroke which I had no idea I had and they found it

by hannibellemo (Oct 14)

Ann, do you know why you are being switched from a TKI that worked for you? I also was unable to maintain TFR for more than 3 months, but I went back on 150mg Tasigna once a day and quickly regained

by bob guimond (Oct 11)

I have been on asciminib 40 mg for 4 months+.

after being off dasatinib med for 5 weeks due to facial allergy, I started asciminib. my bcr/abl on asciminib went from 0.3% to 0.0007% over 3

by annsmith (Oct 10)

So I'm being switched to Asciminib from 20mg Dasatinib which got me to undetected within 4 months. Originally on imatinib for 2 months and then had to quit because of liver toxicity. I tried TRF
Category: Side effects

Replies: 3

Last updated: 15 October 2025
snowman 35 on 9 October 2025

Category: Drug-food interactions

Replies: 0

Last updated: 9 October 2025

Low testosterone
by snowman 35 (Oct 9)

Hi all

Today is had my testosterone results about my testosterone and all the hormones that may be responsible for low testosterone.Every thing came back norma except my free testosterone
Category: Drug-food interactions

Replies: 0

Last updated: 9 October 2025
alexmcpee on 16 August 2023

Category: Side effects

Replies: 12

Last updated: 8 October 2025

Joint pain - later on in treatment
by David787 (Oct 8)

Tonic water works extremely well for cramp for me, but I have not heard of it used for joint pain before…
David

by JoeP (Oct 7)

Hey Al. So you’re on 600mg and at 4.5. I was able to achieve MR5 at 600 but I couldn’t take it, the effects were too much. I cut back to 450 and I remained at MR5 for a year so at that point I cut

by alexmcpee (Oct 6)

Hi mate
Been a while I have posted on here. The joint pain persists mainly in my elbows and left hip like you, the pain is similar to a syatica too. I raised it with my haemo last month where I had

by JoeP (Sep 20)

No matter how many times I go through an orthopedic episode, especially the ones that last over a week, I get depressed and frustrated. I would say those exact emotions are what actually help you
Category: Side effects

Replies: 12

Last updated: 8 October 2025
JoeP on 20 June 2025

Category: Drug-drug interactions

Replies: 3

Last updated: 7 October 2025

Anybody taking generic Nilotinib
by alexmcpee (Oct 7)

Thanks Joe
I'll keep you posted I have a feeling the change is going to be rough. And like you I am convinced they're not as good as the real McCoy as they say.
Let's hope I don't loose response

by JoeP (Oct 7)

Ya my insurance is starting to roll out the generic too. I’ll be on it probably by the end of the year if not sooner.

My experience with generic Imatinib is that not all generics are the same

by alexmcpee (Oct 7)

Hi Joe
I've been on tasigna now for almost 8 years and just received a generic version for the first time today.
Not sure how I feel about it to be honest. I do know there isn't complete consistency

by JoeP (Jun 20)

This month I was informed that my healthcare provider will start using generic Nilotinib. To be honest I didn’t think the generic was going to be yavailable until sometime near the end of the decade
Category: Drug-drug interactions

Replies: 3

Last updated: 7 October 2025
Jacqueline Allmark on 28 July 2025

Category: Side effects

Replies: 1

Last updated: 6 October 2025

extreme fatigue of rapid onset, sweating, collapse
by kel1arthurs (Oct 6)

Hope you’re ok …I was on holiday in Lincoln the other week …got up night for a drink and collapsed ..still don’t know why ..then getting tight chest discomfort ..having tests echo and 24 hr tape but

by Jacqueline Allmark (Sep 1)

thank you I am contacting the GP today

by PhilipDavid (Jul 30)

Hi. I have these attacks and they are due to my type 2 diabetes. Get your blood sugars checked out.

by Jacqueline Allmark (Jul 28)

I was diagnosed with CML 2019 mostly okay on Imatinib 300mg daily good response However I suffer from the above symtoms occasionally but last nignt I had an exteme episode.I was just watching
Category: Side effects

Replies: 1

Last updated: 6 October 2025
catz555 on 24 September 2025

Category: Blood tests

Replies: 12

Last updated: 4 October 2025

Can’t get back to undetectable…
by catz555 (Oct 4)

Thank you for yr response and glad things are going ok for you now. It’s a challenge living with CML however am grateful for the drugs available to help us.

by bob guimond (Oct 3)

for Tanya,

first time responder. 2&1/2 years with cml, a healthy otherwise old man.

please excuse my 1 finger typing. and there is no need to reply. but I noticed you are not the

by David787 (Oct 2)

So sorry to hear that your TFR attempt has come to an end.
I am sure you will get back to undetectable soon.
Best wishes.

by Justine (Oct 2)

Just got my blood results back after TFR beginning June 11. Did not succeed. It came back .494. My hematologist said the protocol is to go back on if it’s above .1. I was taking 50mg dasatinib and
Category: Blood tests

Replies: 12

Last updated: 4 October 2025
David Fitz on 17 August 2025

Category: Uncategorised

Replies: 7

Last updated: 30 September 2025

Having technical issues with the CML Support site? Please get in touch.
by David787 (Sep 30)

Hurrah! It works…

by David Fitz (Sep 30)

Let’s see!!

by David787 (Sep 30)

Thanks for the continued support David.
I have now changed my email address and used the “forgotten my password” link on the log in page.
The forgotten password link arrived in my inbox (hurrah!)

by David Fitz (Sep 15)

Hi David,
We use both this site and Facebook for patient engagement. Some people prefer one, or the other and that’s fine and up to them!
This web site does need an overhaul, and we are currently
Category: Uncategorised

Replies: 7

Last updated: 30 September 2025
scuba on 14 May 2025

Category: Uncategorised

Replies: 20

Last updated: 25 September 2025

TFR report May 2025
by David787 (Sep 25)

That’s very encouraging news! Thank you. Out of interest what do you tell travel insurance companies now?

by EvaH (Aug 22)

I had a similar blip between 3 and 6 months after i stopped imatanib...it scared the bejeepers out of me. But it was just once and I'm TFR since Nov 2021.

by EvaH (Aug 22)

I had a similar blip between 3 and 6 months after i stopped imatanib...it scared the bejeepers out of me. But it was just once and I'm TFR since Nov 2021.

by David787 (Aug 12)

That’s most interesting. I understand that the biggest risk period after starting TFR is the first three months-hence, obviously, the monthly blood tests.
Currently keeping fingers crossed that I
Category: Uncategorised

Replies: 20

Last updated: 25 September 2025
kat73 on 18 September 2025

Category: Uncategorised

Replies: 2

Last updated: 19 September 2025

Scemblix and Prilosec (Omeprazole)
by kat73 (Sep 19)

Thanks, David. The reading I've done on this overnight is just all over the place. Also, I'm no chemist! I appreciate your checking with the pharmacist and sending the link. In Section 9.2 they

by David Fitz (Sep 19)

You are fine to take a proton pump inhibitor with asciminib. I know that’s not the case with a lot of TKIs, but it is fine with asciminib.
I have had this confirmed with a consultant haematology

by kat73 (Sep 18)

I need a definitive answer on this. Just got back from an upper GI endoscopy and the doc found reflux esophagitis and wants me to do an 8-week course of a PPI (Prilosec, or omeprazole.) I just
Category: Uncategorised

Replies: 2

Last updated: 19 September 2025
johnw1001 on 22 July 2025

Category: Side effects

Replies: 3

Last updated: 18 September 2025

Any updates on generic imatinibs
by Harriet (Sep 18)

Hi,I was on generic gleevec and it was not nice,specially thw accord i just couldn't take that,i was switched Gleevec and that was way better plus better pill size,then I just couldn't function

by johnw1001 (Jul 23)

Thanks for the information -useful

Apparently the excipients are different which is the coating and the core(or packing)

In addition one was an alpha formulation -the other a beta

by PhilipDavid (Jul 23)

Hi.
I was switched from Glivec after 5 years to a generic- TEVA. The only thing I can report is it harder on the stomach- aggravating my ongoing acid reflux issues which coincide with me

by johnw1001 (Jul 22)

Hi there,

I have posted before on generics but would welcome any updates you may have -especially from UK

I have been on imatinib for 18 years and initially branded Glivec then Sandoz
Category: Side effects

Replies: 3

Last updated: 18 September 2025
MarkP66 on 28 May 2025

Category: Treating CML

Replies: 8

Last updated: 16 September 2025

Imatinib reduction below 400mg
by David787 (Sep 16)

Hello Mark,
Delighted to hear that your specialist agreed to the imatinib dose reduction. The very best of wishes for your continued journey. I myself am about 5 years into CML and reduced my

by AlastairC (Sep 8)

Hi Mark. Good luck. There is a correlation between whether or not you maintain MMR on 200mg to likely TFR success. If your BCRABL stays undetectable on 200mg, you have a good chance of successful

by MarkP66 (Sep 7)

Hi Colin
Many thanks for post. I have just dropped the dosage to 200 mg daily after consultation with my Dr.

Hopefully I will begin to see some reduction in my side effects over the coming

by colin59 (Sep 7)

Hi Mark,

I was diagnosed in 2007 aged 47. Imatinib was very new then. I went onto 400mg daily and over time achieved MMR. For me the bone pain subsided after several months but the fatigue
Category: Treating CML

Replies: 8

Last updated: 16 September 2025
Jonty R on 22 May 2024

Category: Treating CML

Replies: 32

Last updated: 4 September 2025

Changing to Second Gen TKI's
by Jonty R (Sep 4)

Thanks James. It did seem strange that it had reversed so quickly in one month. However I guess either of the readings could have been wrong. I did read that Ponatinib was for a particular

by JS001 (Sep 4)

Hi Jonty,
I am pleased the side effects have improved with Dasatinib compared to Bosutinib and you quickly reached MMR. Although I am sorry to hear you have subsequently lost this.
It would be worth

by Jonty R (Sep 4)

Hi

I am just resuming this chat following 8 months on Dasitinib (100mg). Things have been pretty good on the whole with side-effects significantly reduced (tinnitus and stomach etc) and I had

by JS001 (Mar 29)

Hi Kat,
Thanks for your reply and the useful advice.
I shall continue to strive to reduce my dose to 20mg at the earliest opportunity.
Take care.
James
Category: Treating CML

Replies: 32

Last updated: 4 September 2025
igennem on 2 September 2025

Category: Blood tests

Replies: 3

Last updated: 4 September 2025

My long term results
by joey (Sep 4)

thanks for this. I'm still learning about a lot of this so its always good to hear about other people's journeys. Good to see you have been able to reduce your doseage to half. I hope one day i get

by igennem (Sep 4)

Hi,
Yep I even lost MR3 for a brief second that time.

Anyway no I have no clue, nothing really has changed.

The doctor had also no clue he just said maybe digestion problem.

by joey (Sep 3)

Hi
thanks for sharing. out of interest was there any particular reason why the BCR ABL jumped back up in 2020. it seems to be going down then jumps up a bit then starts going down again
thanks
Joey

by igennem (Sep 2)

Hi All,
If anyone is curios I just post my BCR-ABL results during the years I was on Nilotinib 2x300 mg all the time.

Some notes.

1. I had to change labs for a while and the second lab
Category: Blood tests

Replies: 3

Last updated: 4 September 2025
JayC on 6 August 2025

Category: About CML

Replies: 3

Last updated: 30 August 2025

Long Term Fasting
by Wstevenson (Aug 30)

I urge you to read the research on this (look for peer reviewed medical journals). There are benefits to fasting but dry fasting more than a couple of days sounds potentially dangerous.

by Mia (Aug 18)

Look up, Professor Valter Longo PhD, he is a fasting expert located in Southern California. I believe he’s connected to the Keck school of medicine at USC in Los Angeles . one of his books is

by JayC (Aug 7)

Can’t see where fasting would be snake oil as no one makes any money from it. There is nothing sold. It’s just using the energy the body normally uses for digestion for healing instead.

by PhilipDavid (Aug 7)

Hi jay. Read John diamonds book. It’s called “ snake oil and other preoccupations “. Trust in proven science and western medicine before going down the fasting route. It don’t work my friend.
Category: About CML

Replies: 3

Last updated: 30 August 2025
snowman 35 on 21 August 2025

Category: Treating CML

Replies: 3

Last updated: 29 August 2025

Bottle of the pills not sealed
by Mia (Aug 29)

I would contact the manufacturer. Bristol-Myers Squibb I think that’s highly unusual .

by snowman 35 (Aug 25)

I went to the pharmacy and told them that the last bottle I took wasn't t sealed and they didn't know what to tell me.

Thank God the next I took was ok.But I don't know what to do ih this

by JoeP (Aug 24)

I would definitely call the pharmacy from where you obtained the Sprycel. These drugs are extremely expensive, the least we can expect are that the pills are fresh, pure, and unopened.

by snowman 35 (Aug 21)

Hi everyone.

Today I opened a new bottle of sprycel and I noticed that it was not sealed as always(with something like aluminum foil).

Has anyone noticed that?Is it ok to take the pills
Category: Treating CML

Replies: 3

Last updated: 29 August 2025
joey on 25 August 2025

Category: Treating CML

Replies: 8

Last updated: 26 August 2025

Imatinib plateau
by joey (Aug 26)

Hi Martin
thanks for the message. that really puts things in perspective for me. i have been so focussed on getting results back checking for secondary cancer (which thankfully has come back

by MartinZA (Aug 26)

Hi Joey
I'll echo what others have said - you're doing great and have reached the response in record time! I've also done a lot of reading and have never seen the view that a result above 0.01% is

by joey (Aug 26)

thanks James for sharing your experience. I think i just convinced myself that if the % was falling significantly each time and then hit a plateau that inevitably the trends going to reverse. I

by joey (Aug 26)

thanks Joe. think i've got to just learn that there's going to be bumps in the road on this journey
Category: Treating CML

Replies: 8

Last updated: 26 August 2025