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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
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
scuba on 8 February 2024

Category: Uncategorised

Replies: 4

Last updated: 22 August 2025

Shiitake Mushrooms ...
by scuba (Aug 22)

Interesting .... this was new for me to learn! I eat shiitake mushrooms very often (anti-cancer) since learning about AHCC (present in Shiitake's).

I need to be sure my shiitake's are cooked

by EvaH (Aug 22)

I had an outbreak of shitake flagellitis while on tkis, a rare but harmless reaction to undercooked shitake mushrooms.
If you develop a rash that starts to look demonic after a few days... That's

by Monacomer (Jul 29)

I had the same question, so I dug around and found that shiitake mushrooms are often fine in moderation unless your doctor specifically advises against them. I’ve also been trying to support my

by healthyhabits (Feb 8)

I believe it. Mushrooms are crazy. Thank you for sharing!
Category: Uncategorised

Replies: 4

Last updated: 22 August 2025
Patch on 14 March 2025

Category: Uncategorised

Replies: 1

Last updated: 22 August 2025

cataract surgery & Teeth removal
by EvaH (Aug 22)

I have two wisdom teeth removed while on TKIs
I also had a leukemia related rentinal issue and had multiple injections of avestin as well as imagining in the year after diagnosis. Its not the same

by Patch (Mar 14)

Hi,

I wonder if anyone else has come across any of these problems..

I recently went along to have my eyes tested at Boots the chemist and was informed I need to have cataract's in both
Category: Uncategorised

Replies: 1

Last updated: 22 August 2025
Kamil on 18 May 2022

Category: Food & fitness

Replies: 8

Last updated: 22 August 2025

Vitamin D and other supplements
by EvaH (Aug 22)

Random info which maybe of use to someone:

I started supplements of vitD after a looong pause. After one month of 5000 UI daily , i achieved a blood level of 60 ng/ml.

I'm reducing to

by Giaseven (May 15)

I've been taking a good multivitamin and vitamin D regularly, and it seems to help with my energy. For sleep, I looked into natural sleep aids for athletes because I train a few times a week and

by Felix (May 21)

Hi, try Nutravita for all your vitamins in the UK ,they do a good Curcumin.They are an amazing company to deal with ,great prices ,and occasional freebies .Open an account on their main site

by scuba (May 20)

Yes - Arms shoulders legs can do it, but back is best. And amount of time. Lying flat in the sun at the beach at noon in summer for about 20 minutes can provide plenty of vitamin D.

https://www.
Category: Food & fitness

Replies: 8

Last updated: 22 August 2025
David787 on 12 August 2025

Category: Organising your life

Replies: 3

Last updated: 20 August 2025

TFR and Travel Insurance
by David787 (Aug 20)

Thanks chaps for your comments and help! I shall report further when I come up for my renewal in a few months.

by Felix (Aug 19)

I was honest and declared it on mine recently ,along with other health issues .It wasn’t very expensive at all .Get quotes off a few because the prices are so different .Tui was very expensive I

by David Fitz (Aug 17)

That’s probably about right. If you spoke to them on the phone, you’d find out that they are mainly interested in if you are currently undergoing chemotherapy. Which of course is a difficult

by David787 (Aug 12)

Once one has started TFR and has undetectable BCR ABL, what do folk declare to their Travel Insurance company? No CML, in remission, cured??
If anyone has any experience with this I should be most
Category: Organising your life

Replies: 3

Last updated: 20 August 2025
kat73 on 9 August 2025

Category: Uncategorised

Replies: 2

Last updated: 18 August 2025

Could Scemblix think coffee is water?
by kat73 (Aug 18)

Thanks so much, David! I will pitch it again to my onc. This gives me some ammo. You may remember (or not!) I was a long ago emigre from the US LLS site, when they redesigned their site to be

by David Fitz (Aug 17)

You absolutely can!
The main thing is steering clear of calorific content. So a black coffee is absolutely fine with asciminib (I’ve had this confirmed with a specialist CML pharmacist in the UK).

by kat73 (Aug 9)

Hi, everybody. Starting Scemblix and I'm having a devil of a time figuring out when I can fit the fasting part in my day. I started out taking it at bedtime, but sometimes we eat dinner late and
Category: Uncategorised

Replies: 2

Last updated: 18 August 2025
MartinZA on 2 August 2025

Category: Treating CML

Replies: 5

Last updated: 9 August 2025

TFR continues but liver function test abnormal
by kat73 (Aug 9)

I think it was the wedding! Glad to hear of your continuing TFR.

by kat73 (Aug 9)

I think it was the wedding! Glad to hear of your continuing TFR.

by MartinZA (Aug 3)

Hi PhilipDavid
Thank you - I have also heard that imatinib can be hard on the liver, but it didn't ever affect mine. Nevertheless, I agree with everything you've said and have completely stopped

by MartinZA (Aug 3)

Hi Joe
Thank you for the reply, and I think what you said is spot on - I am grateful to be in good shape and you're so right that we can be oversensitive. Much of the CML battle is fought in the
Category: Treating CML

Replies: 5

Last updated: 9 August 2025
Smurf42 on 21 November 2014

Category: Side effects

Replies: 4

Last updated: 7 August 2025

Testosterone levels in male CML patients
by snowman 35 (Aug 7)

What type of testosterone do you use?Cream or injections?

I am planing to check my testosterone level and I am thinking if I have to take testosterone, are there any interactions with tki....I

by aseli100 (Jun 14)

If not yet solved the problem : as a cml patient used Testosterone suplamentation due to hypogonadism resulted most probably from treatment . it works! you may get plenty of information by joining

by Smurf42 (Dec 15)

Thankyou Sandy
I'm finding it really difficult to find answers but I will certainly investigate the adrenal fatigue information. Thankyou for your answer :-)

by sandy craine (Nov 23)

Supplementing with hormones -particularly with testosterone- is a difficult area to advise on as there are many effects (some quite scary) that can become an issue. I am sure long term TKi therapy
Category: Side effects

Replies: 4

Last updated: 7 August 2025
sb22 on 17 July 2025

Category: Uncategorised

Replies: 1

Last updated: 6 August 2025

nilotinib and stroke risks
by Tanya (Aug 6)

Hi, I appreciate your post on Nilotinib - I have pushed my doctor to change to another tki. I'm starting with Dasatinib.
Among other side effects I was constantly fighting with breathing normally,

by sb22 (Jul 17)

Nilotinib has been associated with increased risk of peripheral artery disease (PAD), 1–3 coronary artery disease, and cerebrovascular events. 4–6 We present the cases of 3 patients who experienced
Category: Uncategorised

Replies: 1

Last updated: 6 August 2025
Felix on 31 July 2025

Category: Uncategorised

Replies: 2

Last updated: 3 August 2025

Trying TFR
by Felix (Aug 3)

Hello Martin ,thank you so much for replying to me and for all your advice ,much appreciated .I feel so much better off the meds at the moment so ime hoping I can stay off .🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻

by MartinZA (Aug 3)

Hi Felix
I'm not a doctor, but I had to try TFR because of intolerable side effects from both dasatinib and imatinib, and here is what was done with me:
In the first six months, I had monthly BCR-

by Felix (Jul 31)

Hello, hope everyone is well.I recently had surgery and was told to stop Dasatinib for a few weeks .I haven’t restarted yet to see if I could try TFR been off for 9 weeks .My bloods have just come
Category: Uncategorised

Replies: 2

Last updated: 3 August 2025
rambler on 29 November 2024

Category: Uncategorised

Replies: 26

Last updated: 29 July 2025

Blast crisis
by JoeP (Jul 29)

Good news Paul. You are Iron Man fueled by Ponatinib enjoying life. Your story gives us all hope. For once I hear something positive about Ponatinib. I’ll probably end up trying it out or relying on

by rambler (Jul 29)

Hi Joe, thanks for your earlier message,

Hope all is ok with you.

I spoke with my consultant the other day and he was very happy with how things are going. He was surprised how

The

by JoeP (Jul 6)

Rambler the gods are toying with you. They are throwing you into a whirlwind to keep your blood flowing and your system primed for action. I’m eager as I’m sure you are to see where your next

by rambler (Jul 5)

Hello Hannibellemo,

Many thanks for your reply.

Yes I am a bit surprised too about the BCR-ABl test not being accurate. At least they could do another test at some stage.i am going to be
Category: Uncategorised

Replies: 26

Last updated: 29 July 2025