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MartinZA on 3 November 2021

Category: Treating CML

Replies: 11

Last updated: 10 November 2021

Encouragement for turtles
by MartinZA (Nov 10)

Thank you Tater1 - all the best for your recovery too!
Sorry - I've seen that all my messages are now collected at the bottom and not replies to individual responses!
Have a great week

by MartinZA (Nov 10)

Hi ColoradoGuy
Thank you for your message - I'm glad my story has been of some use. These bounces really cause us to feel worried and anxious, but it looks like you are on an overall

by MartinZA (Nov 10)

Hi Sandy and scuba
Thank you so very much for your responses to my post and for the encouragement and kind wishes. Sandy, your story helped me such a lot when I was first diagnosed, and it

by MartinZA (Nov 10)

Hi Timo
Sorry for the late reply - in between power outages and some crazy times at work, I haven't been back to visit the site. I agree with you that more and more people will become
Category: Treating CML

Replies: 11

Last updated: 10 November 2021
Kimbie3116 on 27 February 2021

Category: Treating CML

Replies: 6

Last updated: 9 November 2021

Help! Mouth sores with Imatinib???
by jonnie turpie (Nov 9)

Thanks Very much. I will try this.

Jonnie

by sandy craine (Nov 9)

Mouth sores/canker sores/sore tongue etc. can be a sign of vitamin B12 deficiency. Imatinib (or other TKI) may well be indicated in suppressing your red blood cells count - HGB, B12 can help support

by jonnie turpie (Nov 9)

Hi
I am sorry you are experiencing these mouth sores and hope you might be feeling better.
After 3.5 months of taking 400mg Imatintib I have developed a sore throat and mouth ulcers on the

by alexmcpee (Feb 27)

I’ve been having fairly persistent Geographic Tongue since being Nilotinib but no other mouth sores. This is defo TKI as they started when I started meds. They don’t hurt they are just a
Category: Treating CML

Replies: 6

Last updated: 9 November 2021
Ontasigna on 1 November 2021

Category: Treating CML

Replies: 0

Last updated: 1 November 2021

Ayurvedic herb(kutki powder) with Nilotnib
by Ontasigna (Nov 1)

Hi All
Is it safe to consume ayurvedic herbs when on nilotinib( any interaction)??
Example: Kutki powder
Category: Treating CML

Replies: 0

Last updated: 1 November 2021
Ontasigna on 28 October 2021

Category: Treating CML

Replies: 2

Last updated: 28 October 2021

RTPCR results - interpretation
by Ontasigna (Oct 28)

thanks scuba!!

by scuba (Oct 28)

Yes, indeed you should worry. You will need to worry about how to pay for retirement because you are going to live a long life.
You need to worry about your heart health and other things instead of

by Ontasigna (Oct 28)

Hi All
Below are the results of my test today. The observed copies of ABL1 seems to be less.
Anything to worry??
P210 (b3a2, b2a2) major transcript Not detected
P190 (e1a2) minor transcript Not
Category: Treating CML

Replies: 2

Last updated: 28 October 2021
johnw1001 on 1 September 2021

Category: Treating CML

Replies: 77

Last updated: 24 October 2021

Third or booster Covid jab for "vunerable" patients in UK
by Nimbus2 (Oct 24)

This is another take on the situation:
https://www.independent.co.uk/voices/covid-vaccine-uk-immunosuppressed-p...

by Nimbus2 (Oct 24)

I have responded, John, to your private message. Something is very wrong. My GP indicates that no information has been received from the specialist. The trust flatly refused to talk to me as an

by johnw1001 (Oct 24)

Nimbus I have sent you a private message -on receipt may we discuss a possible course of action further.
This shows a total dereliction of duty by a consultant/NHS trust and a difficult GP .
The

by Nimbus2 (Oct 24)

After weeks, my GP will not move forward with the Third Primary Dose without a consultant's letter. The hospital trust will not speak to patient individually. So I am locked out.
Freedom of
Category: Treating CML

Replies: 77

Last updated: 24 October 2021
Ontasigna on 21 October 2021

Category: Treating CML

Replies: 2

Last updated: 22 October 2021

Nilotinib Night sweat and severe joint pain
by Tanya (Oct 22)

Hi, I'm on Tasigna from May 2021 and experienced the same problems in mid August when heat wave lasted 4 weeks - up to +40C in the shadow.

Unfortunately it was in combination with my second

by sandy craine (Oct 22)

Hi, you may have some kind of infection. Do you have access to your most recent PCR result?
Sandy

by Ontasigna (Oct 21)

Hi All
Recently, I got exposed to high temperature(32 deg centigrade). Since then I have been having severe joint and muscle pain and night sweats like I used to have before diagnosis.
I am on
Category: Treating CML

Replies: 2

Last updated: 22 October 2021
Betty8 on 20 October 2021

Category: Treating CML

Replies: 5

Last updated: 21 October 2021

Your expert advice needed pls- 2 Failed TKI's, BCR ABL 29%... what next?
by wshi2001 (Oct 21)

Hi, Betty,
Have you tried Nilotinib yet? I also started with imatinib, it did not work so well. Then I was switched to Dasatinib, similarly, it gave me a lot of side effects. I asked my

by Betty8 (Oct 20)

Thankyou so much for your quick response Scuba.
I have a meeting with my haematologist tomorrow so will tell them about your experience with Dr. Jorge Cortes then.
it’s reassuring to

by scuba (Oct 20)

I understand now. I went through a similar phase. Although my doctors waited until my neutrophils fell to 0.4 before stopping dasatinib.
What they did for me and I suggest for you in consultation

by Betty8 (Oct 20)

Hi Scuba.
I was diagnosed last August 2020.
They stopped my Dasatinib last week as my blood counts were low and wanted to give me a week break to see if they stats recovered.
BCR ABL 29% /
Category: Treating CML

Replies: 5

Last updated: 21 October 2021
Justine on 30 September 2021

Category: Treating CML

Replies: 6

Last updated: 1 October 2021

Question for everyone about TFR
by Felix (Oct 1)

Hi Justine ,I was diagnosed in November 2017 ,I am sure if you went on Dasatinib 20 mg you would get to be undetected , it works slightly differently than Imatinib it should mop up your residue so

by Justine (Oct 1)

Thanks John for all that good information. I appreciate it and you!
You and Denise both suggested a lower dose. My doctor is in fact a CML specialist and I will talk with him about this at next

by johnw1001 (Oct 1)

Hi Justine,
In direct response to your question about why we as CML patients would want to go for TFR or even dose reduction then I would have two major reasons.The first is that even though tki

by Felix (Sep 30)

Hi, that's certainly low enough to go on to 20 mg ,I am on that and I feel much better than when I was on Imatinib.I was tired all the time ,had the bad rash and hooded eyes ,all that went
Category: Treating CML

Replies: 6

Last updated: 1 October 2021
sandy craine on 1 October 2021

Category: Treating CML

Replies: 0

Last updated: 1 October 2021

Professor Hughes’ CML publications of the month:
by sandy craine (Oct 1)

https://www.cml-foundation.org/science-education-mobile/341-science-cml-news-publications-2019.html
Category: Treating CML

Replies: 0

Last updated: 1 October 2021
snowman 35 on 2 March 2021

Category: Treating CML

Replies: 14

Last updated: 30 September 2021

Tfr and Sprycel. Scuba or anyone?
by snowman 35 (Sep 30)

That is what I am thinking to do Scuba but slowly.... I ll go to 70mg now then 50mg etc and I definetely will try tfr even if I ll do pcr test every three months!

Thank you Scuba for your

by scuba (Sep 30)

Hi Snowman,
Hopefully I can help clarify and settle some concerns.
When CML is reduced to undetected (PCR), the disease has been so reduced or even eliminated (40% of the cases) that it would be

by snowman 35 (Sep 30)

Hi all....

Today I had a phonecall with my doc about tfr.

Unfortunately here in Greece none of both companies that produce Sprycel doesn t undertake the charges for monthly pcr so I can

by snowman 35 (Apr 19)

Hi every one!

I talked with my doc today my pcr results are 0.000 so we discussed again about tfr. He explained me that he has to communicate with the company that produces sprycel in Europe(I
Category: Treating CML

Replies: 14

Last updated: 30 September 2021
EvaH on 24 September 2021

Category: Treating CML

Replies: 5

Last updated: 26 September 2021

Dose Reduction- My Hematologists reaction
by sandy craine (Sep 26)

Hi Eva, not sure I agree with the age thing. Prof.Richard Clarke - the lead investigator of the DESTINY trial is now retired.
There is certainly a divide between those clinicians/researchers who

by EvaH (Sep 26)

Thanks for the comments, very helpful.
And yes my current hematologist is ancient. Past retirement in Europe most likely.

by Christine R (Sep 25)

Hi Eva

I think haematologists do fall into the 2 camps of either dose reduction or all or nothing. I asked my local haematologist about a possible dose reduction and his view was that i was

by Buzzm1 (Sep 24)

EvaH, by first reducing your dosage prior to any TFR attempt, should you fail TFR you can restart on a very low TKI dosage (Imatinib 100mg), rather than the full TKI dosage (Imatinib 400mg) that
Category: Treating CML

Replies: 5

Last updated: 26 September 2021
Rory on 10 September 2021

Category: Treating CML

Replies: 5

Last updated: 22 September 2021

PCR Increase of 2800% following MMR4 - on Dasatanib
by Rory (Sep 22)

Thanks so much for your response and support. I shall see what tomorrow’s blood test reveals! I had a two week bout of terrible toothache in last period ending with root canal surgery and was

by thomas.c (Sep 21)

I had multiple 10x blips during my dasatinib treatment in the past 4 years, eventually they went back to normal. But i feel your pain, it is certainly extremely stressful to experience something

by Rory (Sep 10)

Guys - thanks so much for this input. I’ve no idea what size of magnitude you can see in outruns or downturns but of course am a bit sceptical about such a seemingly massive increase.

by scuba (Sep 10)

Rory - I would ask for an immediate re-test. It is quite possible the results are due to lab error (it happens), but if it is not, you do not want to wait two months to confirm a dramatic upward
Category: Treating CML

Replies: 5

Last updated: 22 September 2021
nicolaclubb on 25 August 2021

Category: Treating CML

Replies: 15

Last updated: 7 September 2021

Asciminib
by sandy craine (Sep 7)

Hi John,
Just to add, the MHRA is still the body that licenses all drugs for use in UK, NICE HTAppraisals asses the cost benefit of drugs/technologies for use in the NHS. The NICE HTA of

by David Fitz (Sep 6)

Nicola,
Asciminib is quite different to the other TKIs for CML. It targets a completely different part of the kinase domain.
In the picture below, you can see where nilotinib binds, and this is

by johnw1001 (Sep 6)

Thanks for the reply
If you Google "Jorge Cortes Asciminib" you will see a number of papers and references listed and also a video;apparently the drug has a different binding mechanism

by nicolaclubb (Sep 4)

Hi thanks for the info John.

The ball is being rolled for the approval on compassionate grounds for Asciminib. As I have failed 3 TKIs including Ponatinib.
But for me I
Category: Treating CML

Replies: 15

Last updated: 7 September 2021
Humberto on 19 July 2021

Category: Treating CML

Replies: 4

Last updated: 4 September 2021

BCR Rising?
by Humberto (Sep 4)

Just to let you know, my BCR level has gone down to 0,77 after 8 weeks with Imatinib.
So, after the first 2 weeks it raised from 2,7 to 5,4, and after 6 more weeks it has gone down to 0,77.
I'm

by Nimbus2 (Jul 21)

You have some complicating factors here, but my consultant advised me that a three month elapsed time is required before testing is performed after a change of TKI. Your consultant's approach

by Humberto (Jul 20)

Thank you Alastair. Crossing fingers :-)

by AlastairC (Jul 19)

Hi
I think two weeks is likely too short a time to see any difference, but not 100% sure. The first check after any change for me (in UK) has been 1 month after the change and another 1 month later
Category: Treating CML

Replies: 4

Last updated: 4 September 2021
Betty8 on 5 August 2021

Category: Treating CML

Replies: 9

Last updated: 25 August 2021

Not responding to treatment 1 year on
by Ismo (Aug 19)

Useful info thanks! yes the side effects profile do seem a little more serious with these two TKIs but of course they are said to be more effective than Imatinib, all about risk benefit analysis I

by Ismo (Aug 19)

I dont know yet still waiting tests from Kings I sincerely hope not.

by EvaH (Aug 19)

For info, I have no experience with NHS guidelines either. From what i have seen advice for CML varies between countries /continents especially depending if you or your insurance pays for treatment

by David Fitz (Aug 18)

Second line decision between dasatinib and nilotinib is generally down to issues such as previous heart problems, or potential for lung problems. Both drugs are perfectly approved for second line (
Category: Treating CML

Replies: 9

Last updated: 25 August 2021
skiinglaketahoe on 31 July 2021

Category: Treating CML

Replies: 4

Last updated: 1 August 2021

Bosutinib
by skiinglaketahoe (Aug 1)

Hi
Very briefly, as it's such a long, boring and complicated story..............
Yes, I have been on the forum for a long time. I was dx in 2005 and intolerant to both glivec and dasatanib. I

by Jmbnccyn (Jul 31)

Hello, I see that you have been in this forum for 14 years, after so long I am curious why you switch to bosutinib, after so many years have the previous TKIs stopped working? Or is it for other

by skiinglaketahoe (Jul 31)

Thank you Humberto, that's very useful and as you say we are all different.
Good luck with your treatment
Susan

by Humberto (Jul 31)

Hi.
I was on bosutinib few months ago. I had some diarrhea 3-4 weeks, but it disappeared. Try to take it after meal and it got better.
It was very effective, decreased BCR levels really fast. But
Category: Treating CML

Replies: 4

Last updated: 1 August 2021
TimoD on 9 June 2021

Category: Treating CML

Replies: 7

Last updated: 26 July 2021

Not the PCR result I was hoping for
by TimoD (Jul 26)

Hi!
I received my 7,5 month PCR result on Friday and it was 1,5 %. So currently I am making progress on nilotinib 800 mg. Still struggling with low blood counts, thus I will be downgraded to 600 mg

by alexmcpee (Jun 28)

Hey Timo,
The increase in Nilotinib might just do it until things stablise and your other levels start to hold. Hang in there mate.
Al

by TimoD (Jun 22)

Just to update. I am on a full dose (800 mg daily) nilotinib and with support from platelet transfusion and growth factor.
Since my PCR rose to 18 % at six months and I am lagging behind milestones

by alexmcpee (Jun 11)

Absolutely mate. We panic and for the most part our doctors don’t. Exactly that’s my thought you responded well in the beginning so stay the course I am sure it’ll all come
Category: Treating CML

Replies: 7

Last updated: 26 July 2021
JPD on 22 June 2021

Category: Treating CML

Replies: 18

Last updated: 20 July 2021

Dose reduction for everyone (MMR and lower)? DESTINY study.
by joflo (Jul 20)

Ah thanks for the update it was 10 yrs since I saw him...

by AlastairC (Jul 19)

I think Prof Clarke has retired from clinical practice.

by joflo (Jul 19)

Hi Buzz thanks so much for this yes 10 yrs is a long time and ur right given I’m not good at taking it these days they are probably using it as stick rather than carrot method to not

by joflo (Jul 19)

Hi there yes I know there’s a few others who just deal with pharmacist..not unusual nowadays probably a resource issue . I don’t mind just seeing the pharmacist as I was only ever with
Category: Treating CML

Replies: 18

Last updated: 20 July 2021
sandy craine on 9 July 2021

Category: Treating CML

Replies: 0

Last updated: 4 August 2021

iCMLf conversations - Managing Pregnancy during CML treatment
by sandy craine (Jul 9)

If you missed the iCMLf EHA highlights webinar last week, the recording can be found here: iCMLf Conversation EHA Highlights
iCMLf Conversation - CML & Pregnancy -
Join our two experts as
Category: Treating CML

Replies: 0

Last updated: 4 August 2021
Susanne2311 on 6 July 2021

Category: Treating CML

Replies: 4

Last updated: 7 July 2021

Pfizer vaccine
by Susanne2311 (Jul 7)

So glad to hear this!!!! Thank you so much!!! God bless.

by Roza (Jul 6)

Hi, I had both jabs of the Pfizer, 1st in Jan and then Mar. No problems at all. Good luck to your brother and tell him not to worry.

by Susanne2311 (Jul 6)

Thank you so much for replying!! You just gave a huge relief to me and my family who are struggling to cope with this situation. God bless!!

by An (Jul 6)

My husband has cml ,diagnosed in 2019,currently on 100 mg dasatinib,he took both doses of pfizer ,nothing else other than some tiredness and sore arm for two days,drink lots of water.
Category: Treating CML

Replies: 4

Last updated: 7 July 2021