You are here

Forum

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
Tedro on 13 April 2020

Category: Treating CML

Replies: 6

Last updated: 27 June 2021

Sprycel 100mg missed dose
by Tater1 (Jun 27)

I also use Easy Pill, based on one of your previous posts and love it. My husband also sets a regular alarm on his phone…. To remind me to take my meds. I also put one dose in an

by alexmcpee (Jun 27)

Hi
I also use an app called MyTherapy which reminds me twice a day to take my Nilotinib. Because Nilotinib has strict guidance and can’t be taken with food I have to stick to the schedule so

by Krissi0913 (Jun 27)

Obviously adherence to the schedule is what we should all be doing. Same time every day. Having said that, I am no expert, but your logic seems sound to me. I can't image that

by David Fitz (Apr 13)

I use an app called Easy Pill that reminds you to take your pills, and will keep harassing you until you tell it you’ve taken it.
Never missed a pill in over 7 years.
https://www.
Category: Treating CML

Replies: 6

Last updated: 27 June 2021
thomas.c on 26 June 2021

Category: Treating CML

Replies: 6

Last updated: 26 June 2021

TFR fail
by Buzzm1 (Jun 26)

Thomas, CML, untreated, can easily double week-to-week, so the three weeks in between the first test and receiving the result can easily account for the second test 0.08 result. Not to panic,

by thomas.c (Jun 26)

Thanks, John for sharing your story. It must have been difficult to go through all the complications. I hope your condition have stabilized ever since.
Well, i guess there is nothing else to do but

by thomas.c (Jun 26)

Thanks, John for sharing your story. It must have been difficult to go through all the complications. I hope your condition have stabilized ever since.
Well, i guess there is nothing else to do but

by johnw1001 (Jun 26)

Hi Thomas,
It seems that from the data and from previous studies that about 50 percent of us that attempt it will fail TFR; dose reduction prior to cessation seems to help a little though in terms
Category: Treating CML

Replies: 6

Last updated: 26 June 2021
Ontasigna on 6 June 2021

Category: Treating CML

Replies: 1

Last updated: 10 June 2021

URGENT : Lymphocytes Increased
by ColoradoGuy (Jun 10)

What were your lymphocytes previously? I don't think that this is the cause of your pain. My CBC always gives a range to fall within but for Lymphocyte percent it does not.

by Ontasigna (Jun 6)

Hi All.,
Due to severe muscle and joint pain. I got my blood tested today.
There is an increase in Lymphocytes count.
TLC : 7740
Neutrophils : 40%
Lymphocytes - 48%
Monocytes: 6.6%
Eosnophils : 4.3
Category: Treating CML

Replies: 1

Last updated: 10 June 2021
ipmaki on 17 May 2021

Category: Treating CML

Replies: 7

Last updated: 26 May 2021

Long Time to Reach MMR
by David787 (May 26)

Fab! Well done...

by Patch (May 21)

Congratulations, Fantastic news.

by philmc (May 21)

Congrats Ian!

by cct121 (May 19)

Congratulations mate!
Hearing your results actually made me feel even better, because it took my roughly 3 years to reach that level as well. Glad your results have been positive!
Category: Treating CML

Replies: 7

Last updated: 26 May 2021
David Fitz on 14 May 2021

Category: Treating CML

Replies: 2

Last updated: 14 May 2021

Models of care for chronic myeloid leukemia patients during the COVID‐19 pandemic
by David Fitz (May 14)

My consults are on the phone these days - no video. I know my consultant very well at this stage, so it works OK but I can imagine a video link being very beneficial. Steve O'Brien spoke the

by alexmcpee (May 14)

Cheers David.
Myself personally I don’t mind the telephone consultations rather than a visit to the hospital which is always anxiety inducing I can now do that at home lol. The one thing you

by David Fitz (May 14)

I thought a few people here might find this interesting ... it's a study (I am one of the authors) about how people have been treated for CML during the pandemic, and what people's
Category: Treating CML

Replies: 2

Last updated: 14 May 2021
Ontasigna on 4 May 2021

Category: Treating CML

Replies: 3

Last updated: 12 May 2021

Diclofenac 50mg / 3 doses
by hannibellemo (May 12)

Hi, ontasigna! I did a search on drugs.com for drug interactions between the two, of course this search doesn't take into account any other drugs you may be taking. You can enter those and see

by Ontasigna (May 7)

Thanks for the details. However, i still have severe joint and muscle pain since i stopped diclofenac.
Does diclofenac effects nilotinib efficacy?

by johnw1001 (May 4)

Hi,
Most medics are very reluctant on prescribing Diclofenac for long term use because of the risk of stomach bleeds so if you are taking it without the use of a proton pump inhibitor I would advise

by Ontasigna (May 4)

Hi All,
I took diclogenac 50 mg / 3 doses with 12 hrs apart one hour after my Nilotinib dose.
I am having bad joint pain/muscle pain and fatigue after stopping Diclofenac.
I am worried as the
Category: Treating CML

Replies: 3

Last updated: 12 May 2021
pianogrl44 on 5 May 2021

Category: Treating CML

Replies: 4

Last updated: 11 May 2021

Skin depigmentation w Imatinib
by sbp03 (May 11)

Hypopigmentation is a relatively commom side effect caused by TKI (see link below). In my case, it came together with hyperpigmentation with melasma and melanonychia, supposedly because the

by PhilipDavid (May 10)

Hi. I was diagnosed in February 2015. Been in imatinib since April 2015. It does interfere with your skin colour. I look like Dracula - my skin is so white now and you can

by kat73 (May 8)

Yes, it interferes with melanocytes, which produce pigment. I forget which kinase it hits to do this - c-KIT? PDGFR? Doesn't matter much. You can usually spot people on

by johnw1001 (May 7)

Have a look a few posts back at a recent discussion on Forum dated 18 April 2021 titled "Increased skin sensitivity to the sun" where the subject is referred to.What you refer to is not
Category: Treating CML

Replies: 4

Last updated: 11 May 2021
pianogrl44 on 28 April 2021

Category: Treating CML

Replies: 4

Last updated: 30 April 2021

Imatinib Resistance
by An (Apr 30)

My husband recently had a rise from 0.03 to 0.05 and we were really worries but the next one it was back to 0.03.I think some fluctuations are normal ,as my bil said not much difference in 5 in 10,

by pianogrl44 (Apr 30)

Thanks so much Sally and Alex. It’s nice to hear a couple other perspectives and hopefully my results are just in line with the nature of CML and it’s just one of those normal

by Sally Martin (Apr 29)

Hi, I’m on nilotinib having switched last Summer from imatinib, which was causing my Neutrophils to dip too low. I achieved a major molecular response very quickly but actually my last reading

by alexmcpee (Apr 29)

Personally I just see this as a blip nothing more. Wouldn’t worry about the panels they’re all in range. It prob means your body is working more as it should rather at the lower end of
Category: Treating CML

Replies: 4

Last updated: 30 April 2021
CharlieL on 21 April 2021

Category: Treating CML

Replies: 1

Last updated: 22 April 2021

Beyond TKIs?
by alexmcpee (Apr 22)

You have nothing to worry about clinically no difference between 0.016% and MR4. If you start to loose MMR altogether I'd say thats when to start worrying, but even then as long as you

by CharlieL (Apr 21)

Hi everyone,
31 year old father of one here. I've been on nilotinib/Tasigna since 2016 and got a pretty good response to it (to start off with). I even managed to get beyond
Category: Treating CML

Replies: 1

Last updated: 22 April 2021