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Vikram on 15 November 2025

Category: About CML

Replies: 0

Last updated: 15 November 2025

CML and marriage
by Vikram (Nov 15)

Can I marry a woman with type 1 diabetes?
Look at some profiles on a diabetes matrimonial site.
I couldn't find a single girl with CML cancer on any matrimonial site.
Look at profiles on matrimony
Category: About CML

Replies: 0

Last updated: 15 November 2025
argearge on 15 November 2025

Category: Getting help

Replies: 2

Last updated: 15 November 2025

Cml advise asked
by argearge (Nov 15)

I do not have any side effects from Imatinib and Nilotinib is a no go because I have arteriosclerosis.

by JoeP (Nov 15)

I have a similar situation with Nilotinib, if I stick to 450mg/day (which is not even a recommended dose) I can remain undetected.

I am now at 400mg / day mostly because my oncologist doesn’t

by argearge (Nov 15)

Hi There,

A long time ago since I posted something. I plateauted a few years with imatinib 600 (in the beginning sub optimal responder and changed after 1 year from Imatinib 400 to 600).
Category: Getting help

Replies: 2

Last updated: 15 November 2025
Misbah on 12 November 2025

Category: Treating CML

Replies: 0

Last updated: 12 November 2025

Pregnancy and interferon
by Misbah (Nov 12)

Hi all
I am 31 years old and finally pregnant after being diagnosed with cml 4 years ago and waiting so long for this moment. I went in to remission last year and came off my Dasatinib in April this
Category: Treating CML

Replies: 0

Last updated: 12 November 2025
anasiin2 on 26 May 2024

Category: Treating CML

Replies: 20

Last updated: 12 November 2025

Not achieved MMR , BCR-ABL UP again .. Really need help
by anasiin2 (Nov 12)

Thanks for breaking that down! The control gene example really makes sense now, I didn’t realize how much those numbers can swing just because of sample size. Good to know that 0.071 vs 0.09 isn’t a

by David Fitz (Nov 11)

I would say you have stabilised! You achieved MMR in March (yay!), and have held it since then for 9 months with a moderate downwards trend. 0.09 isn’t really an increase on 0.071, they are well

by JoeP (Nov 10)

You’re doing quite well in my book. It took me 5 years to reach MMR. Keep up the good work, you’re doing fine.

by anasiin2 (Nov 10)

Hello All,
I just wanted to share an update on my progression. It’s been over three years since I started treatment with Imatinib, followed by Bosulif. In January 2025, I switched to Scemblix and
Category: Treating CML

Replies: 20

Last updated: 12 November 2025
suvankardas on 8 November 2025

Category: Side effects

Replies: 4

Last updated: 10 November 2025

Concerned about Side effects of Ponatinib 30mg
by suvankardas (Nov 10)

Hello David you have always been my help at every stage of my disease. Relieved to know about the dose related complications. Doc is starting with 3mg/day and will reduce the dose to 15mg as you

by rambler (Nov 10)

Hello,

I was diagnosed with CML in early 2022. I have been on Ponatinib since January this year. Started on 15mg. Then increased to 30mg In February. Since May I have been on 30/45 mg on

by JoeP (Nov 9)

David’s insightful post sounds very reassuring to me.

Suvan, switching TKIs is never easy but you look like a young guy from your pic and that will work in your favor.

Perhaps a way to

by David Fitz (Nov 9)

Hi,
I understand why this feels super scary, but maybe I can offer you some hope.
The really nasty side effects of ponatinib are heart related, but they are most strongly correlated to the 45mg
Category: Side effects

Replies: 4

Last updated: 10 November 2025
suvankardas on 11 October 2025

Category: Blood tests

Replies: 8

Last updated: 7 November 2025

Sudden rise in BCR ABL IS
by JoeP (Nov 7)

Suvankardas, you may want to start a thread asking for others in this forum to chime in on their use of Ponatinib. I know there are a few out there. I would like to see what people’s view is on it.

by David Fitz (Nov 7)

Ponatinib was the first TKI that was active against t315i, but today there are other options. Asciminib, at higher doses, is also effective but it’s not approved for this use in all countries (is in

by JoeP (Nov 7)

From what I find with a simple search online, it appears Ponatinib is designed to treat this particular CML mutation.
JP

by suvankardas (Nov 6)

It’s T315I mutation.
Category: Blood tests

Replies: 8

Last updated: 7 November 2025
JoeP on 20 June 2025

Category: Drug-drug interactions

Replies: 5

Last updated: 5 November 2025

Anybody taking generic Nilotinib
by JoeP (Nov 5)

Hanni,
I would keep in touch with your health plan on this issue. They will probably change back to the generic. I can’t see them resorting back to the more expensive option. But if you do go back

by hannibellemo (Oct 28)

JP,
I haven't opened it yet, but I received my first generic nilotinib. I kept getting my meds when I was trying TFR because I really didn't have any faith it would work for me. Now I have a couple

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
Category: Drug-drug interactions

Replies: 5

Last updated: 5 November 2025
kat73 on 18 September 2025

Category: Uncategorised

Replies: 8

Last updated: 1 November 2025

Scemblix and Prilosec (Omeprazole)
by kat73 (Nov 1)

Yes, I started omeprazole on Sept 22nd. I had been on Scemblix about 6-1/2 weeks by then. My next PCR will be on Nov 13th. I’ll let you know!

by JoeP (Nov 1)

Kat,
Have you started with omeprazole yet? If so can you let us know how your BCR/ABL goes in mid November. I ask because, as I mentioned in my earlier response, my numbers dropped significantly

by kat73 (Oct 30)

Pat - How nice to hear from you! I think of you more often than I post. H2 antagonists like fomatidine could be a way around this conundrum, but I think right now, for the 8 week "healing" period

by kat73 (Oct 30)

Joe - Thanks for the positive info. It's certainly what I want to hear!
Category: Uncategorised

Replies: 8

Last updated: 1 November 2025
nilotinib on 30 October 2025

Category: Uncategorised

Replies: 3

Last updated: 1 November 2025

Shingles vaccine
by JoeP (Nov 1)

I took the shingles vaccine while on Imatinib and didn’t have any issues.

by nilotinib (Oct 31)

Thank you very much David.

It was bothering me.

by David Fitz (Oct 31)

It’s totally safe to have the Shingrix vaccine for shingles, as it is not a live vaccine. The older one is live, and should be avoided.
David.

by nilotinib (Oct 30)

Is it safe to have the shingles vaccine while taking imatinib?
Category: Uncategorised

Replies: 3

Last updated: 1 November 2025
LouiseS on 19 October 2025

Category: Side effects

Replies: 1

Last updated: 28 October 2025

Stroke as a side effect of Sprycel
by hannibellemo (Oct 28)

Louise,
Thank you for this post about your husband's stroke - I'm glad he is doing so well. I know the first thing I tend to do is blame all of my illnesses on my medication or CML. This is a good

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: 1

Last updated: 28 October 2025
snowman 35 on 9 October 2025

Category: Drug-food interactions

Replies: 1

Last updated: 27 October 2025

Low testosterone
by PhilipDavid (Oct 27)

Hi.
I was diagnosed with CML 10 years ago , I have been on imatinib and my PCR is 0.005. Some 4 years ago my blood tests were showing very low Testosterone levels, low free T levels plus all the

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: 1

Last updated: 27 October 2025
ckquinn on 31 August 2020

Category: Side effects

Replies: 4

Last updated: 22 October 2025

Breaking teeth
by barry33 (Oct 22)

I’ve been in a similar spot with constant dental issues and finally had to consider implants. If anyone’s around Ohio, I went with Dental Implants in Eastlake Ohio https://jeffreygrossdds.com/

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
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
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
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
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
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