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rsgiles on 23 February 2025

Category: Blood tests

Replies: 1

Last updated: 26 February 2025

How fast
by scuba (Feb 26)

A Gran % of 77.8 all by itself without other blood count data can mean anything. You could be responding to an infection (you may not even be aware) or some other trigger. Granulocytes are

by rsgiles (Feb 23)

Hi I am worried about my pcr test. My last pcr was 0.004 which was down a little from the one before that. On my last cbc test there was a test I noticed that was GRAN%77.8 high. I am worried that
Category: Blood tests

Replies: 1

Last updated: 26 February 2025
joey on 13 February 2025

Category: Uncategorised

Replies: 6

Last updated: 24 February 2025

Imatinib - Kidney issues - Creatinine high, EGFR low
by joey (Feb 24)

thanks Phillip, much appreciated

by PhilipDavid (Feb 23)

Hi. Joe.
The calculation for the kidney function test is based on your creatine level which is raised on imatinib. The last test I had I drank 2 litres of water to get rid of the creatine in my

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
Category: Uncategorised

Replies: 6

Last updated: 24 February 2025
Theresa Healy on 18 February 2025

Category: Treating CML

Replies: 5

Last updated: 24 February 2025

Imatinib & autoimmune condition
by JoeP (Feb 24)

Let us know if you discover anything.

by Theresa Healy (Feb 22)

Thank you, that's really interesting. I hadn't even thought about how foods and drinks might interact with the TKI.

by JoeP (Feb 22)

For years before coming to this forum I suffered from many side effects of either the disease or the treatment not knowing they were the cause or at least part of it. What I have learned over the

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
Category: Treating CML

Replies: 5

Last updated: 24 February 2025
rsgiles on 21 February 2025

Category: Children & young people

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: Children & young people

Replies: 0

Last updated: 21 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
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
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
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
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