You are here

Forum

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
SorubhMaggo on 19 April 2021

Category: Treating CML

Replies: 0

Last updated: 19 April 2021

Swelling in foot on Dasatinib
by SorubhMaggo (Apr 19)

Hello there,
I have been on 100mg Dasatinib for almost 3.5 years. So far so good!
10 days before I got hurt with a nail under my left foot. The wound was well healed in a few days but leaving behind
Category: Treating CML

Replies: 0

Last updated: 19 April 2021
Chca3977 on 11 April 2021

Category: Treating CML

Replies: 5

Last updated: 12 April 2021

Has anybody had a stem cell transplant to help cure CML?
by sandy craine (Apr 12)

I hope his GVHD is not having too much of an impact on his quality of life. He was obviously in a difficult place - Blastic transformation - so I am not surprised they went for full transplant. Even

by sandy craine (Apr 12)

Hi Scuba,
Yes...my PCR tests show BCR-Abl % at 0.0002% and sometimes 0.0001%. My haematologist (Prof. Jane Apperley) just views these results as negative- or as you sometimes refer to this kind of

by Chca3977 (Apr 11)

Hi,

thanks for the reply. So good to hear your now cured and the BCR - ABL undetectable. My boyfriend was diagnosed at the ‘blast’ stage with Full Intensity Haplo transplant 9/10

by scuba (Apr 11)

HI Sandy,
I was curious your statement, "... virtually undetectable"?
Do you still have 'detection' occurring?
Category: Treating CML

Replies: 5

Last updated: 12 April 2021
Ontasigna on 10 April 2021

Category: Treating CML

Replies: 3

Last updated: 11 April 2021

Bcr abl slightly increased
by alexmcpee (Apr 11)

No difference at all. On paper yes in reality no. As far as I understand anything under 0.01% is inconsequential.

by Ontasigna (Apr 11)

Thank you sandy.

by sandy craine (Apr 10)

Do not worry.... there is no significant difference in these results. Sandy

by Ontasigna (Apr 10)

Hi all,
My bcr abl is slightly increased from 0.0014 to 0.0029
Bit worried. Kindly suggest
Category: Treating CML

Replies: 3

Last updated: 11 April 2021
johnw1001 on 18 March 2021

Category: Treating CML

Replies: 0

Last updated: 18 March 2021

ASH Conference Proceedings December 2020
by johnw1001 (Mar 18)

Hi All,
For anyone new to CML it might be good to explain that every year in December in United States there is a major conference for hematologists worldwide where any advances in treatments
Category: Treating CML

Replies: 0

Last updated: 18 March 2021
Mari_lyn on 28 February 2021

Category: Treating CML

Replies: 7

Last updated: 12 March 2021

Why am I so slow...
by Mr_T1987 (Mar 12)

Evening,
I was a slow responder to treatment. Started on Imatinib which caused me all sorted of issues. I changed to Dasatinib which was working but never got me into MMR and then developed a

by AlastairC (Mar 9)

Hi
There are quite a few people who have stuck on a plateau of BCR-ABL results for 6-9 months and then it has suddenly dropped. In my case I was around 0.6% from about 9 months post diagnosis to 18

by Mari_lyn (Mar 8)

Thank you for your advice. That’s exactly what my dr said as well, that he wants to await the next results. And that’s it is not a lineair line but that it moves in sort of a ‘wave

by ColoradoGuy (Mar 4)

It looks like you are just past 6 months and at 11%. I believe the target is under 10% at least by six months. That being said I don't think Dasatinib has made it's full effect
Category: Treating CML

Replies: 7

Last updated: 12 March 2021
MartinZA on 22 February 2021

Category: Treating CML

Replies: 3

Last updated: 22 February 2021

In praise of Vitamin D
by scuba (Feb 22)

Martin - let us know your vitamin D level test results.

by MartinZA (Feb 22)

Hi scuba
Thank you so very much for the detailed post and for the explanation. Practical and extremely helpful advice as always! I'm going to aim for that level of Vitamin D between 50 and 100 and

by scuba (Feb 22)

It's near impossible to overdose on D to toxic levels while supplementing on 10,000 IU's per day or less. The body itself can make between 10,000 - 20,000 IU's on its own when exposed to

by MartinZA (Feb 22)

Hi everyone
A year or so ago I posted about my BCR-Abl levels and my view that it had something to do with Vitamin D. In summary, I was stuck on 0.03% for a very long time (over a year) before
Category: Treating CML

Replies: 3

Last updated: 22 February 2021
israel on 17 June 2019

Category: Treating CML

Replies: 9

Last updated: 20 February 2021

Looking to reduce dosage of Imatinib 600mg to 400mg
by israel (Feb 20)

1.03N/AN/AN/A20150.063N/AN/AN/A20160.070.02N/AN/A20170.0890.0132N/AN/A20180.020.0091N/AN/A20190.00.00.00.020200.000250.0120.00820.00420210.011
* N/A = Not available

by israel (Jan 28)

Hi,
Quick update on my dose reduction journey. I had two more PCR tests since I last posted to this thread:

- November: 0,0073
- January: <0,00025

The tests weren't

by israel (Aug 18)

Hi all,
I want to give an update on my treatment since I last opened this thread.
In July, I started to take a reduced dose of Imatinib every other day, alternating between 600mg today and 400mg

by israel (Jun 19)

Hi Poppert!
I didn’t have any PCR tests in between February 2015 and February 2016. My national healthcare system isn’t able to provide the optimal PCR test frequency, so big gaps
Category: Treating CML

Replies: 9

Last updated: 20 February 2021