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rsgiles on 21 February 2025

Category: Blood tests

Replies: 0

Last updated: 21 February 2025

Help with CBC test
by rsgiles (Feb 21)

Hi, I am worried about my last CBC test. One of the tests called Gran% is 77.8. It also said that it is a high number. When I looked it up I saw that it means there is a serious infection and now Im
Category: Blood tests

Replies: 0

Last updated: 21 February 2025
YianniA on 20 February 2025

Category: Treating CML

Replies: 1

Last updated: 21 February 2025

Has anyone used Acminib.
by 3oK@ (Feb 21)

Hi John,
I was on asciminib 80 mg for 5 months and had to stop it due to massive fluid retention around my waist which started obstructing breathing.
Once I stopped it, I lost 10 kg in 1 month.
I

by YianniA (Feb 20)

Currently on Dasatanib 50 but doctor wants me to try new med. and my BCR is low. He states some symptoms are less like water retention. But they want to test heart and take blood every month at the
Category: Treating CML

Replies: 1

Last updated: 21 February 2025
joey on 13 February 2025

Category: Uncategorised

Replies: 4

Last updated: 19 February 2025

Imatinib - Kidney issues - Creatinine high, EGFR low
by joey (Feb 19)

thanks. that's interesting to hear -so have your creatine levels been high as well as having the low efgr- but you have been able to remain on imatinib? i am due to have a kidney scan soon but will

by PhilipDavid (Feb 19)

I was diagnosed 10 years been on imatinib 400 mg per day since diagnosis.. I too have the same issue with the kidney function tests. My EGFR - was coming back at 49% and the locum gp telling me

by joey (Feb 15)

Hi Martin
thanks for responding so quickly. Its always reassuring to hear from someone has been in the same position and how it was handled. I, like you, made the link that the low egfr relates to

by MartinZA (Feb 14)

Hi Joe
Sorry to hear about this news. I was on imatinib for around 4 years and had my creatinine levels and EGFR tested twice during that time. Creatinine was 108 and 112. I was also concerned
Category: Uncategorised

Replies: 4

Last updated: 19 February 2025
Theresa Healy on 18 February 2025

Category: Treating CML

Replies: 2

Last updated: 19 February 2025

Imatinib & autoimmune condition
by Theresa Healy (Feb 19)

Hiya, in all the years I've had this autoimmune condition I've never had the blisters on my body, only inside my mouth but it's escalated and I now have them on my body so thinking it can only be

by JoeP (Feb 19)

What is the trigger? How do you know your autoimmune issue is acting up?

I was on Imatinib for 11 years. Most of what I remember of that experience is back pain.

I switched to Nilotinib

by Theresa Healy (Feb 18)

Hi there, many years ago before my diagnosis of CML I was diagnosed with an autoimmune condition called angina bullosa which I now know can be an early sign of leukaemia.
I've been on Imatinib
Category: Treating CML

Replies: 2

Last updated: 19 February 2025
NishKatu on 15 January 2025

Category: Blood tests

Replies: 4

Last updated: 9 February 2025

Concerning BCR-ABL1 upward
by JoeP (Feb 9)

Your numbers are great. I agree with Alistair that the .001 reading could be suspect but that said you cruised ahead through MMR in record time.

You might be able to achieve MR5 OR CMR soon.

by suvankardas (Feb 9)

It’s normal I think. I am from India and being treated in Chennai. I have attached my progress so far. It’s like sea wave up down is normal. I am going to have another test next week.

by NishKatu (Jan 16)

Thank you for your feedback, I feel relieved. My next appointment with oncologist is due tomorrow, will see what his thought on this

by AlastairC (Jan 15)

I wouldn't worry, but would suggest you get another test in 3 months rather than 6. As an 18 year veteran of these test results, I'd say that your July 2024 result which showed a 2 log drop in 2
Category: Blood tests

Replies: 4

Last updated: 9 February 2025
cml1234 on 6 February 2025

Category: Getting help

Replies: 3

Last updated: 9 February 2025

help:How to find all posts by a specific ID?
by David Fitz (Feb 9)

If it’s a one-off for a particular user, I can try.
David.

by cml1234 (Feb 7)

That's still too bad, if I want to access all the posts of a certain user, can you, as an administrator, help me?

Thanks.

by David Fitz (Feb 6)

Hi there,
Unfortunately outside of our admin tools that is not a feature our current forum platform supports. It's frustrating, as I know this would be a nice feature to have.
David.

by cml1234 (Feb 6)

When browsing forums, I often come across certain IDs that share excellent self-management experiences, and some have even TFR’d. I’d like to view all posts from these IDs to learn about their
Category: Getting help

Replies: 3

Last updated: 9 February 2025
bdmemphis on 4 January 2025

Category: Side effects

Replies: 11

Last updated: 9 February 2025

Anyone else experience cognitive/memory issues while on TKIs?
by suvankardas (Feb 9)

I have been on Imatiniv 400 for about 2 years. After few months of detection my mother doctor referred me to a psychiatrist who put me on Mitrazapine. I definitely was under affect of some mental

by Wstevenson (Jan 25)

Brown,

After a year and a half on imatinib I developed fatigue and brain fog. After midday it was sometimes difficult to think at all. Given that I need to use my brain at work, that led me to

by PhilipDavid (Jan 25)

Hi. I don’t often post on this sight but always check for updates. Memory loss on TKI. I too have experienced of late a down grade in short term memory- but never put it down to the tki. I am on

by 3oK@ (Jan 15)

Ok thanks
Category: Side effects

Replies: 11

Last updated: 9 February 2025
MartinZA on 21 January 2025

Category: Treating CML

Replies: 8

Last updated: 9 February 2025

29 months in TFR - my miracle continues
by MartinZA (Feb 9)

Thanks Wstevenson, Sav_5 and David for the kind words and support!
cml1234, thank you too for the wishes. To answer your question, I'll be 47 in May and was diagnosed in November 2015 aged 37. I

by cml1234 (Feb 7)

Congrats and good luck with getting better and better.
May I ask how old you are now and how many tki's you have you taken？

by David Fitz (Feb 6)

Wow, congratulations Martin!

by Sav_5 (Jan 29)

Congratulations Martin!! Always be healthy and lucky!

Thanks for sharing the great news!
Category: Treating CML

Replies: 8

Last updated: 9 February 2025
Amanda Lax on 24 January 2025

Category: Uncategorised

Replies: 6

Last updated: 31 January 2025

Still learning, Bosulif advice
by Amanda Lax (Jan 31)

Hi Zoran,

Wow!, thank you so much for all that information, and for relating personal experience, it makes such a difference to me swimming in the sea of misinformation!

I need to take

by 3oK@ (Jan 30)

Hi Manda,
Yes, I started Bosulif mid December 2024. Here is a couple of important notes I learned about it:
1. It takes time till it starts working and till you see measurable results. In my case it

by Amanda Lax (Jan 29)

Hi Zoran, i take 4x100 mg daily. Are you on Bosulif?

Regards, Manda

by 3oK@ (Jan 29)

Hi Manda,
How much Bosulif you take?
Thanks

Zoran
Category: Uncategorised

Replies: 6

Last updated: 31 January 2025
MomOfCML on 28 October 2024

Category: Blood tests

Replies: 8

Last updated: 20 January 2025

Now what?
by MomOfCML (Jan 20)

An update:
His latest tests have come back, and the blip was indeed a blip. Down to 0.2398, Log 2.62. So he continues on the slow but steady progress to the magic 0.1/Log3.
Thanks again for all your

by Taper11 (Nov 19)

Your son has tons of options if you decide for a switch. 4 other TKIs and 3 in trials at the moment.
As many agree on here, it's probably not needed at the moment. Imatinib is the slowest, least

by alexmcpee (Nov 2)

Hi there
Your son like me and many many other "youngsters" on here take longer to respond.
The MMR milestone causes a lot of unnecessary worry, I like your son took 2.5 years to hit MMR. I hang

by JoeP (Nov 2)

I can’t speak for others but I too felt uncomfortable for many years. But over time you get accustomed to the condition and, it becomes routine.
Category: Blood tests

Replies: 8

Last updated: 20 January 2025
rambler on 29 November 2024

Category: Uncategorised

Replies: 20

Last updated: 16 January 2025

Blast crisis
by JoeP (Jan 16)

Nice! That’s good news for all of us.
Joe

by rambler (Jan 16)

Hi Joe,

Thanks for writing. All going well. My consultant called a couple of days ago, and said the immunotherapy I was

receiving has done its job. I am all clear. No more blast cells.

by scuba (Jan 16)

87 ng/ml is excellent!

by JoeP (Jan 16)

Paul how are you doing? It’s good to see you writing new posts. Let us know about your progress.
Category: Uncategorised

Replies: 20

Last updated: 16 January 2025
Jonty R on 22 May 2024

Category: Treating CML

Replies: 25

Last updated: 4 January 2025

Changing to Second Gen TKI's
by Jonty R (Jan 4)

Thanks for this insight James - very helpful. Good luck with the ongoing treatment.

Best wishes

Jon

by JS001 (Jan 3)

Hi Jonty,
I'm pleased your BCR-ABL result is moving in the right direction and that you've nearly reached MMR. Although I'm sorry to hear hear that your tinnitus is still present. If this is

by Jonty R (Jan 2)

Hi all,

Hope everyone is doing well and had a good Christmas and New Year.

It's been a difficult few months for me on Bosutinib. Whilst my BCR has dropped to 0.18 which is good news,

by JS001 (Sep 24)

Hi Jonty,
I'm sorry that your latest result is disappointing, although it hasn't increased and the trend may still be downwards (it is hard to establish a trend from only 2 results).
I wouldn't
Category: Treating CML

Replies: 25

Last updated: 4 January 2025
cgovind on 2 December 2024

Category: Side effects

Replies: 2

Last updated: 4 January 2025

Dasatinib and leg pain
by Felix (Jan 4)

Hi, your Sons bloods are looking good ,time to reduce his dose ,he doesn’t need 70 mg .Its toxic stuff .Lower dose will help with any side effects .

by johnw1001 (Dec 28)

First of all it is not unusual to experience bone and muscular pains from a number of the tkis in the first 12 months of treatment-it is often quoted as a positive sign that the drug is reducing the

by cgovind (Dec 2)

Hi! My son has been on Dasatinib 70mg for the 5 months. His Q-PCR reading after 3 months was 0.43% (it had gone up marginally to 1.8% with imatinib which is why we shifted to Dasa). Over the last
Category: Side effects

Replies: 2

Last updated: 4 January 2025
suvankardas on 13 December 2024

Category: Getting help

Replies: 1

Last updated: 23 December 2024

No able to reduce weight
by JoeP (Dec 23)

Suvankardas,
I don’t know if losing weight is harder for us CML folk but I can tell you in general losing weight is not easy. Or should I say, losing weight is easy, keeping it off is difficult. I

by suvankardas (Dec 13)

Since my diagnosis in Nov 22 I have been on Imatiniv 200 two times a day. Recently my HBA1c level has increased to 7.5. Since then I am working hard on my fitness and trying to reduce my weight by
Category: Getting help

Replies: 1

Last updated: 23 December 2024
JoeP on 29 November 2024

Category: Treating CML

Replies: 6

Last updated: 23 December 2024

Suddenly dropped out of undetected status
by JoeP (Dec 23)

Thanks for asking Paul. Glad to hear you are out of the hospital. Keep the faith. Like my wife always says to me, it never happens the way you think. Your wife Denise seems like a lovely person, you

by rambler (Dec 23)

Hi Joe,

Hope you are well. Have been meaning to ask, how did your doctors appointment go on the 9th December.

Are you trying another tki ?

I was discharged after 15 nights in

by JoeP (Dec 3)

Paul when do you go see your doc again? It must be this week. I am eager to hear what transpires. There’s still a lot left to kick in that can.
Hang in there bro,

Joe

by rambler (Dec 2)

Hello Joe,
It’s Mrs Rambler here. I really love your ‘rodeo’ analogy. Thanks for the big smile.
I have an analogy I quite like to use, that comes from financial crisis days. We sometimes heard
Category: Treating CML

Replies: 6

Last updated: 23 December 2024
SageH on 19 December 2024

Category: Uncategorised

Replies: 2

Last updated: 23 December 2024

Shelf Life of Sprycel
by SageH (Dec 23)

Thank you Scuba! I suspected the date on the bottle was unreasonably conservative. The sudden switch to just one year out (when all the literature says a minimum of two to three years) didn't make

by scuba (Dec 23)

Dasatinib's shelf life (aka Sprycel) is much longer than the expiration date on the bottle. Dasatinib is a salt with strong ionic bonds (dasatinib monohydrate ). If stored in a sealed container and

by SageH (Dec 19)

I have googled and found that the shelf life of Sprycel is either two years or three years. I have extra medication which I would like to keep. Recently, I have noticed that the expiration date on
Category: Uncategorised

Replies: 2

Last updated: 23 December 2024
Asinghb123 on 13 December 2024

Category: Uncategorised

Replies: 6

Last updated: 15 December 2024

Considering switching to second gen TKI
by JoeP (Dec 15)

I was one of those people with a WBC in the tens of thousands. Maybe that why it took so long for me to reach MMR.

by Asinghb123 (Dec 14)

Yes, I guess it will take a bit more time for my body to adjust to the medication and will hopefully settle as I get to MMR. Maybe it is more realistic to resume sports some time in Jan next year.

by AlastairC (Dec 14)

Ok so WBC not that high at diagnosis (some people are in the tens of thousands when diagnosed) but your body still had some adjustment to make as that reduced. I guess your now about back to normal

by Asinghb123 (Dec 14)

Hi,
My WBC count was 330 at diagnosis.
Category: Uncategorised

Replies: 6

Last updated: 15 December 2024
David Fitz on 13 November 2024

Category: Treating CML

Replies: 12

Last updated: 13 December 2024

Please help with a short questionnaire
by suvankardas (Dec 13)

Done !

by Patch (Dec 8)

Done

by Nick Duncan (Dec 1)

Hi,

Many thanks for completing the questionnaire - your experience is really interesting. I am supervising this project and as a pharmacist working with CML patients I have seen first hand

by Nimbus2 (Nov 30)

Done.
I had no problem moving from dasatinib Sprycel to Zentiva and Teva generics.
Previously, I suffered greatly in using the various imatinib generics.
The pharmacist will tell us that the
Category: Treating CML

Replies: 12

Last updated: 13 December 2024
rambler on 23 November 2024

Category: About CML

Replies: 14

Last updated: 8 December 2024

Concerned about a BCR-ABL result
by rambler (Dec 8)

Just sent you a message Joe, from Mrs Rambler

by JoeP (Dec 8)

How are you doing Paul? How is the food? Are you all caught up on world events? Send us some good news.

by rambler (Dec 5)

Hi Joe,

Thanks for your latest message

Thanks for your message.

I started taking 30mg of Ponatinib last Thursday. Today I started on immunotherapy via a CAD pump, which lasts for

by Christine R (Nov 26)

Asciminib Food

Moderate Food Interaction
Food may reduce the absorption of asciminib, which may lead to lower blood levels of the medication and possibly reduced effectiveness. You should
Category: About CML

Replies: 14

Last updated: 8 December 2024
Santa on 7 December 2024

Category: Side effects

Replies: 0

Last updated: 7 December 2024

Imatinib, Gilbert's Syndrome, jaundice
by Santa (Dec 7)

Hi! Is there anyone with Gilbert's Syndrome and on Imatinib or other TKI? I am on Imatinib 400mg since 2020. I have always had elevated bilirubin levels, therefore, I did testing for Gilbert's
Category: Side effects

Replies: 0

Last updated: 7 December 2024