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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
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
Reilly9108 on 16 November 2024

Category: Uncategorised

Replies: 3

Last updated: 17 November 2024

Blood clots from CML or Sprycel
by Reilly9108 (Nov 17)

Thank you

by Wstevenson (Nov 17)

Hello,

I found this information on sprycel/ dasatinib which does mention blood clots.
https://www.macmillan.org.uk/cancer-information-and-support/treatments-a....
The guidance is to see

by Wstevenson (Nov 17)

Hello,

I found this information on sprycel/ dasatinib which does mention blood clots.
https://www.macmillan.org.uk/cancer-information-and-support/treatments-a....
The guidance is to see

by Reilly9108 (Nov 16)

Anyone?
Category: Uncategorised

Replies: 3

Last updated: 17 November 2024
Russell girl on 13 June 2023

Category: Side effects

Replies: 6

Last updated: 17 November 2024

Dastinib side effects
by Wstevenson (Nov 17)

Thank you, this is very helpful. Assuming all is well with my next blood test I will be discussing this with my oncologist!

by Felix (Nov 17)

Hi, less is more with Dasatinib no way would I take 100 mg .I started on 50 mg but very swiftly dropped to 20 mg because it gave me a headache ,then everything was fine .Now I only take 10 mg a day

by Wstevenson (Nov 17)

Felix,

Your message about 80mg dasatinib being too high-- would you say that is always true or would there be circumstances when a higher dose is called for (early in treatment for example)?

by Reilly9108 (Nov 16)

Anyone experience blood clots on Sprycel
Category: Side effects

Replies: 6

Last updated: 17 November 2024
Suboptimal_ on 4 November 2024

Category: Side effects

Replies: 7

Last updated: 17 November 2024

Suddenly hit with imatinib side effects (fatigue, hair loss) after 4-5 months
by Felix (Nov 17)

Hi, hopefully your side effects will lessen and you will feel like you again very soon ,I certainly did .Have you had your thyroid checked ,that can cause thinning hair ,I have an overactive thyroid

by Wstevenson (Nov 17)

Hi,

I had hair loss on Imatinib as well. It got to the point where it was a bit embarrassing having so much hair on my shoulders and front, so I cut my hair short. There were times when it was

by alexmcpee (Nov 8)

Hi there
fatigue hit for me about 1.5 years after starting Nilotinib and came on all of a sudden. All bloods totally normal and in MR4.
Fatigue is very common for us CMLers as the meds can be quite

by Suboptimal_ (Nov 6)

Thanks Sarah. It's good that it comes and goes, at least! I don't think I can deal with being this tired constantly, so I'm hoping for the same. And with the hair as well, haha. I noticed that
Category: Side effects

Replies: 7

Last updated: 17 November 2024
rebeccacrosby on 11 November 2024

Category: Uncategorised

Replies: 4

Last updated: 17 November 2024

Update from blast phase with AML
by Wstevenson (Nov 17)

So happy for you. Thank you for sharing.

by alexmcpee (Nov 13)

This is amazing news how scary for you though. I hope and I am sure all will turn out fine.
Alex

by JoeP (Nov 12)

This is deserving of huge congratulations.

What an amazing story.

You must have gone through a gamut of emotions.

To come through a serious journey so well has to be invigorating.

by joey (Nov 12)

this is great to read. I was diagnosed in stage 1 of CML and am thankful for that. really encouraging though to see such a positive post from someone who was diagnosed with blast phase of both CML
Category: Uncategorised

Replies: 4

Last updated: 17 November 2024
Evie on 5 November 2024

Category: Uncategorised

Replies: 12

Last updated: 16 November 2024

information on Nilotinib
by JoeP (Nov 16)

Evie,

Having taken both Imatinib and now on Nilotinib, I can say that in my experience the side effects with Imatinib were quite annoying and challenging at 400mg qd. Nilotinib has taken me

by Evie (Nov 15)

Hi David,
Would it be possible to find out what area or hospital you are under in the uk.

by AlastairC (Nov 14)

Hi Joey.
Great news about the 0.1% (MR3) in 9 months; this is the benchmark for 12 months into treatment so you are clearly in this context a hare rather than a tortoise. I'd say that as long as you

by johnw1001 (Nov 14)

Ho Joey,

Many haematologists will tell you that in their experience imatinib is still for many the best choice tki-for what reasons ?

-Dasatinib has an issue with pleural effusions (1 in
Category: Uncategorised

Replies: 12

Last updated: 16 November 2024
johnw1001 on 10 October 2024

Category: Organising your life

Replies: 5

Last updated: 12 November 2024

Is having CML a disability?
by johnw1001 (Nov 12)

Hi Alex,

Yes there are two strands to my original posting in that we have the employment related issues and then the consideration over claiming for PIP/Attendance Allowance(depending on age)

by alexmcpee (Nov 12)

This is quite a timely post. To answer Johns question yes CML and any form of Cancer in the UK is regarded as a disability and we have certain rights when it comes to employment such as the

by joey (Oct 28)

Hi John
that's really useful. It's only in the last couple of months i have started to try and get my head around the fatigue.. Seeing what you have quoted from NICE guidelines is really helpful as

by johnw1001 (Oct 25)

Hi Joey

Thanks for your useful response

I came across this in a document prepared by NICE and it seems that it summarises CML quite well

"CML has a substantial impact on the
Category: Organising your life

Replies: 5

Last updated: 12 November 2024
JPD on 29 October 2024

Category: Uncategorised

Replies: 4

Last updated: 30 October 2024

Going from Tasigna to Imatinib
by JoeP (Oct 30)

I don’t blame you for wanting to get off nilotinib. I’m on it 2.5 years, developed hyperlipedemia, and I can feel it in my heart sometimes. I too workout and eat pretty well. I plan to de-escalate

by 3oK@ (Oct 30)

Have you considered discontinuing it?
In 2018, based on results of two international studies, the Food and Drug Administration (FDA) approved an update to the recommended use of the TKI nilotinib (

by JPD (Oct 29)

Ah, didnt think about the flowcharts. Still, I read a paper today that said Gleevac might even be GOOD for cardiovascular system. Ive got some family history of CVD, so the better I can do on that

by David Fitz (Oct 29)

Gleevec / Glivec (imatinib) does have lower cardiovascular events, and certainly in the hospital I am treated in they are actively moving people from nilotinib but this is not usually to imatinib
Category: Uncategorised

Replies: 4

Last updated: 30 October 2024
Asinghb123 on 8 October 2024

Category: Uncategorised

Replies: 16

Last updated: 28 October 2024

Bone aches and muscle pains
by Asinghb123 (Oct 28)

Thank you.
I have been keeping of a journal this month and have noticed the aches have improved. It is coming up to 6 weeks of experiencing aches so hoping it will become minimal soon so I can

by Wstevenson (Oct 27)

I wish I had kept a journal of side effects but from my memory it started a few weeks into treatment and lasted maybe 2-3 months. Bone aches did not return after they went away but muscle cramps did

by Wstevenson (Oct 27)

I wish I had kept a journal of side effects but from my memory it started a few weeks into treatment and lasted maybe 2-3 months. Bone aches did not return after they went away but muscle cramps did

by Asinghb123 (Oct 26)

Hi,
Thank you for your advice, yes I am focusing a lot on my diet and eating healthy.
How long were you experiencing aches for? Once the aches improved, did they come back from time to time or not
Category: Uncategorised

Replies: 16

Last updated: 28 October 2024
Wstevenson on 23 September 2024

Category: Treating CML

Replies: 9

Last updated: 26 October 2024

What are my treatment goals?
by AlastairC (Oct 26)

Winnie, best wishes. Please let us know how you're getting on in a few months.

by Wstevenson (Oct 26)

Alastair and all,

I did decide to switch to dasatinib, started this past week. My reasoning was this- if I'm dealing with side effects (worst of which has been fatigue) I may as well try the

by AlastairC (Sep 27)

Winnie I'm glad you found all our inputs useful. Please let us know what you decide and how it works out for you - it is all good learning for the future for all of us.
Best wishes
Alastair

by Wstevenson (Sep 25)

David, Alastair, and Joe,

Thank you all for sharing your experiences and perspectives. You have given me a lot to think about. Alastair I did read the entire thread you shared (so cool to
Category: Treating CML

Replies: 9

Last updated: 26 October 2024
JoeP on 22 October 2024

Category: Uncategorised

Replies: 2

Last updated: 23 October 2024

Harvey Weinstein diagnosed with chronic myeloid leukemia
by JoeP (Oct 23)

I am not much of a stats person so I don't know. I'm in the US and I think the number is in the thousands / year.
Ya I was wondering what he is on considering that he's in jail. I would guess

by Amanda Lax (Oct 23)

So i see! Wonder what he's been prescribed?!

Is that right that there are only 750 cases diagnosed each year in the UK? It may be discussed somewhere on the forum, but i can only read and

by JoeP (Oct 22)

https://abcnews.go.com/US/harvey-weinstein-diagnosed-chronic-myeloid-leu....
Category: Uncategorised

Replies: 2

Last updated: 23 October 2024
17721459 on 17 October 2024

Category: Uncategorised

Replies: 4

Last updated: 22 October 2024

Nilotinib Dose Reduction?
by Sav_5 (Oct 22)

Hi Min,
I was diagnosed two months after you and since then I am on nilotinib 600mg. After nine months my BCR-ABL was undetectable and remain since then. I hope you feel better one day without side

by JoeP (Oct 21)

17721459,

You are doing great! I was on Imatinib for 11 years and it took 5 years to reach MMR. When I switched to Nilotinib within 10 months of starting I reached MR5, 0.00. I attribute most

by Christine R (Oct 18)

I was told if i was below 0.01 for 12 months i could reduce my dose. I was reduced from 600mg to 400mg which i took in one dose rather than the 2 which made a practical difference to me. My BCR ABL

by Dustylloyd (Oct 17)

Hi min,
I was on nilotinib 800mg for over 9 years, and in mmr for most of that, only changed medication and dosage this year due to my age, to be honest I’ve had more side effects with the new
Category: Uncategorised

Replies: 4

Last updated: 22 October 2024