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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
NishKatu on 15 January 2025

Category: Blood tests

Replies: 2

Last updated: 16 January 2025

Concerning BCR-ABL1 upward
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

by NishKatu (Jan 15)

Hi All,
I am new to this forum, and I was diagnosed with CML last year. I have the below queries and would really appreciate if someone could share their feedback.
Clinical History:

Feb 2024
Category: Blood tests

Replies: 2

Last updated: 16 January 2025
bdmemphis on 4 January 2025

Category: Side effects

Replies: 8

Last updated: 15 January 2025

Anyone else experience cognitive/memory issues while on TKIs?
by 3oK@ (Jan 15)

Ok thanks

by Christine R (Jan 12)

No i am not taking scemblix. I have essential thrombocythemia (too many platelets) as well as CML. The interferon (pegasys) is not for CML I take 90ml every 4 weeks currently to reduce my

by 3oK@ (Jan 12)

Hi Brown,
It may help if you reduce carbs and sugar. For me, water fasting helps and after 2 days I notice a massive declutter, it’s like my brain switches to the next gear. I now do it when I need

by 3oK@ (Jan 12)

Hello Christine,
Are you taking interferon together with Scemblix and is it the pegyleted one? Would you please share some details about it e.g. how much, how often and how long you have been taking
Category: Side effects

Replies: 8

Last updated: 15 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
johnw1001 on 3 December 2024

Category: Treating CML

Replies: 0

Last updated: 3 December 2024

CML (Chronic Myeloid Leukemia)-A survival guide for patients
by johnw1001 (Dec 3)

I have found a book published by Dr Bhratri Bhushan that is a good read especially if you are new to CML .The section on managing the side effects of TKIs I found particularly useful.I found the
Category: Treating CML

Replies: 0

Last updated: 3 December 2024
cgovind on 1 July 2024

Category: Children & young people

Replies: 12

Last updated: 3 December 2024

Switching from Imatinib to Dasatinib (11Yo patient)
by cgovind (Dec 3)

thanks! may be we should consider a lower dose as has been suggested by many in this forum

by Mia (Dec 2)

Yes I believe it’s a side effect of all TKis, about four months into Dasatinib, I started getting sharp pains in my legs, knees and shins. I am now on my fourth TKI Acsiminib,still have leg pain

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

by 3oK@ (Aug 6)

My doctor said there are no rules, it’s very individual.
Category: Children & young people

Replies: 12

Last updated: 3 December 2024
Amanda Lax on 27 October 2024

Category: Side effects

Replies: 4

Last updated: 2 December 2024

Imatinib Sides
by Amanda Lax (Dec 2)

Hi John, and thank you for that very comprehensive and useful reply, and indeed, reassurance. I can see (literally) that the eye stuff is part of my getting used to long term Imatinib,

by johnw1001 (Dec 1)

Hi ,

It is a fairly common side of imatinib to suffer various forms of eye disturbance.The product literature cites the incidence as probably about one in ten of patients. The most common

by Amanda Lax (Oct 31)

Thanks for that,much appreciated. Im hoping that a lot of the side effects reduce, or that i get used to them. I havent had children but somedays, most days i seem to get a strong craving for

by JoeP (Oct 30)

Yes I experienced puffy eye while on Imatinib. I think it’s a common side. I also experienced extreme dry eyes but that was toward the end of my 11 year run on Imatinib. You can try adjusting your
Category: Side effects

Replies: 4

Last updated: 2 December 2024
RC Kirk on 15 November 2024

Category: Drug-food interactions

Replies: 4

Last updated: 30 November 2024

FDA Approves Nilotinib Tablets Without Mealtime Restrictions for CML
by David Fitz (Nov 30)

That is interesting - I had always known that nilotinib and food equaled overdose, and had assumed the same about asciminib. But but he looks of it, food and asciminib = lower than desired dose.
I’

by RC Kirk (Nov 27)

It's interesting that original formula nilotinib (Tasigna) shouldn't be taken with food because it increases bioavailability,
"Food-Effects

The bioavailability of nilotinib is increased by

by JoeP (Nov 23)

I agree this is a big deal. I too have become accustomed to the fasting regimen and I actually think it helps to regulate my weight. But anything to make life easier is good in my book.

by alexmcpee (Nov 22)

This is amazing, having to fast has become 2nd nature for me now but not having to think about this in the future is great. Also the reduced dose is also appealing. I am 7 years on Nilotinib and
Category: Drug-food interactions

Replies: 4

Last updated: 30 November 2024
r06ue1 on 18 June 2019

Category: Treating CML

Replies: 53

Last updated: 19 November 2024

Non-Detectable (0.000%) and potential cure for CML
by r06ue1 (Nov 19)

I gave my oncologist the details from the study and he prescribed it for me, find a doctor willing to prescribe it for you.
They also use it to treat ulcers in dogs.
Pretty sure you can get it

by anasiin2 (Nov 19)

Thanks, Ro6ue1 for sharing such a important update here .
I have been experiencing the same issue. It's been over 2.5 years, and I've been stuck with my PCR levels fluctuating between 0.25% and 0.

by r06ue1 (Nov 18)

I have more details on my blog but still non-detectable as of October tests and haven't officially been on any medications since February of this year.
https://directdemocracyandgifteconomy.

by r06ue1 (Nov 18)

Officially, no drugs at all since February (really stopped in the summer of 2022, only taking once or twice a month, the combo).
Category: Treating CML

Replies: 53

Last updated: 19 November 2024
anasiin2 on 26 May 2024

Category: Treating CML

Replies: 16

Last updated: 19 November 2024

Not achieved MMR , BCR-ABL UP again .. Really need help
by anasiin2 (Nov 19)

Hello JoeP
Thanks for the sharing that thread link. I have posted my comments on that thread.

Hope for the best.

by JoeP (Nov 19)

There is a thread titled “Non-Detectable (0.000%) and potential cure for CML” pretty high on the queue that talks about using misoprostol to bring numbers down. You can either search or scroll down

by anasiin2 (Nov 18)

Hello All,
I still haven't achieved MMR, and it's been 30 months now. My oncologist increased my Bosulif dosage from 500 mg to 600 mg in August, but there hasn’t been much improvement in the last

by anasiin2 (Aug 14)

Thanks ColoradoGuy for your response .
Last week, I met with my oncologist to discuss my BCR-ABL results. After reviewing the results, he suggested that I switch to a 3rd generation TKI such as
Category: Treating CML

Replies: 16

Last updated: 19 November 2024
scuba on 30 September 2024

Category: Uncategorised

Replies: 6

Last updated: 17 November 2024

"Undetected" continues ... (Update)
by FirefighterCML (Nov 17)

Scuba, I would be interested in talking to you over the phone. I am scheduled to see a specialist beginning 2025. I think we could cover a lot of ground by talking. I need some direction on how

by David787 (Oct 15)

It’s great news Scuba-you have worked very hard to beat this and very deserving of your excellent results so far…keep up the good work!
After becoming “undetectable” for a year, I have had my

by scuba (Oct 13)

May, 2012 : Diagnosis. Accelerated phase near blast crisis. FISH = 100%

Prescribed 400 mg imatinib by a local Heme/oncologist (non-specialist)
CML symptoms began to alleviate after two weeks,

by cml1234 (Oct 13)

Congrats, can you share your experience with treatment and recovery? Thank you!
Category: Uncategorised

Replies: 6

Last updated: 17 November 2024