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David Fitz on 13 November 2024

Category: Treating CML

Replies: 8

Last updated: 18 November 2024

PinnedPlease help with a short questionnaire
by anasiin2 (Nov 18)

Done

by Amanda Lax (Nov 18)

Done

by PhilipDavid (Nov 18)

Duly completed

by Evie (Nov 16)

Done
Category: Treating CML

Replies: 8

Last updated: 18 November 2024
anasiin2 on 26 May 2024

Category: Treating CML

Replies: 14

Last updated: 18 November 2024

Not achieved MMR , BCR-ABL UP again .. Really need help
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

by ColoradoGuy (Jul 29)

Your trends look very similar to what I went through. I switched from Dasatinib to Nilotinib at around 18 months. Nilotinib took a while to get me under 0.1 (with some readings going slightly in

by anasiin2 (Jul 29)

Hello All,
Below are my latest PCR-ABL test results. The PCR-ABL result is still 0.3182. I am not sure how long it will take to achieve MMR. Anyway, I have an appointment with the doctor next month
Category: Treating CML

Replies: 14

Last updated: 18 November 2024
r06ue1 on 18 June 2019

Category: Treating CML

Replies: 51

Last updated: 18 November 2024

Non-Detectable (0.000%) and potential cure for CML
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).

by FirefighterCML (Nov 17)

Any updates to your story? I am curious as to the outcome

by JoeP (Oct 15)

R06ue1 that’s really good news. So you are not on any drugs now? Not even the misoprostol?
Category: Treating CML

Replies: 51

Last updated: 18 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
RC Kirk on 15 November 2024

Category: Drug-food interactions

Replies: 0

Last updated: 15 November 2024

FDA Approves Nilotinib Tablets Without Mealtime Restrictions for CML
by RC Kirk (Nov 15)

https://www.onclive.com/view/fda-approves-nilotinib-tablets-without-meal...
Key Takeaways
Nilotinib (Danziten) is approved for Ph-positive CML without mealtime restrictions, offering convenience
Category: Drug-food interactions

Replies: 0

Last updated: 15 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
MomOfCML on 28 October 2024

Category: Blood tests

Replies: 6

Last updated: 2 November 2024

Now what?
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.

by MomOfCML (Nov 1)

Thank you everyone for your kind and thoughtful responses. I admit to a few tears being shed and a very deep exhale. I so deeply appreciate all I have learned from lurking about on this forum and

by AlastairC (Oct 29)

In overview his BCRABL has plateaued between 0.33 and 0.26 for the last year - this range is within the level of repeatability for the test process - i.e. effectively they are the same reading. I
Category: Blood tests

Replies: 6

Last updated: 2 November 2024
Amanda Lax on 27 October 2024

Category: Side effects

Replies: 2

Last updated: 31 October 2024

Imatinib Sides
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

by Amanda Lax (Oct 27)

Hi, was just reading the contributions re bone pain and other sides. I was diagnosed June this year, on Imatinib, and i would say ive had an array of side effects, as someone else said, not
Category: Side effects

Replies: 2

Last updated: 31 October 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
EvaH on 17 October 2024

Category: About CML

Replies: 1

Last updated: 17 October 2024

Undetected BCR/ABL but low levels of ABL detected
by scuba (Oct 17)

Low levels of ABL detected refers to the detection of the ABL gene, which is a normal gene present in all cells. The ABL gene serves as a control in PCR tests to confirm the test's accuracy. Low

by EvaH (Oct 17)

Hi all
I've been TFR since 2021 and my latest results show BCR-ABL as undetected but low levels of ABL detected - has any one had this happen?

What might it mean?
Eva
Category: About CML

Replies: 1

Last updated: 17 October 2024
snowman 35 on 7 October 2024

Category: Blood tests

Replies: 3

Last updated: 17 October 2024

Bcr abl a little up
by EvaH (Oct 17)

Oh this sucks!

I remember the feeling all too well
Happened to me about 6 months into TFR but please wait, it may well go down again. It did in my case and its stayed undectable.

by snowman 35 (Oct 7)

It is hard to manage the anxiety that causes me at the time but I totally understand what you say!Thank you!

by AlastairC (Oct 7)

This is nothing to worry about. Variation in the third placed of decimal in the result is likely an artefact of the test process and nothing to do with your disease. The third place has only been

by snowman 35 (Oct 7)

Hi all

I just got my pcr test and from undetected now is 0.004.Except one more time in the past that was 0.002 all the other PCR was undetected .I am starting freaking out now....I take
Category: Blood tests

Replies: 3

Last updated: 17 October 2024