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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
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
DrFord on 9 August 2024

Category: Treating CML

Replies: 16

Last updated: 15 October 2024

Dasatinib resistance, or suboptimal response?
by JoeP (Oct 15)

You’re making some big moves with Nilotinib. I had similar drops but not as wide on Nilotinib. Definitely let us know what happens on 11/11. If you keep it up you could pass MMR on this next test.

by JS001 (Oct 15)

Hi Chris,
That's great news! I'm pleased that Nilotinib appears to be working and that your numbers are moving in the right direction. Fingers crossed that you reach MMR soon.
Take care
James

by DrFord (Oct 15)

My BCR-ABL result on 04.10.24 came back at 0.5% after switching from 100mg Dasatinib.
To re-cap:

23.04: 1.5%

04.06: 1.7%

26.07: 1.2%

22.08: 1.2% switched to Nilotinib.

by DrFord (Sep 2)

Hi Martin, thank you for your kind words of support and encouragement. It is reassuring to know my experience so far is not to dissimilar to yourself and your friends. Thank you for sharing and any
Category: Treating CML

Replies: 16

Last updated: 15 October 2024
Smee on 1 April 2024

Category: About CML

Replies: 4

Last updated: 15 October 2024

Kidney function cystatin c test in UK.
by beero (Oct 15)

Any updates? I think I also have some similar issues, although I'm still "only" 5 years on imatinib.

by AlastairC (Oct 3)

Thanks for these posts. I had a fasting cholesterol a few months ago and the kidney function test taken at the same time indicated a minor issue - although it might have been that I was dehydrated

by johnw1001 (Oct 1)

Hi

Just a follow up on this

The cystatin c test is available in UK and has been approved for use under NICE guidance-apparently in cases where for various reasons the usual urine,

by johnw1001 (Sep 30)

Hi

Thanks for this posting

Having been on imatinib for 17 years my creatinine level and gfr has steadily declined -especially over the last few years . Currently my specialist and my GP
Category: About CML

Replies: 4

Last updated: 15 October 2024
davidmoler08 on 7 October 2024

Category: Side effects

Replies: 3

Last updated: 12 October 2024

CML spreading?
by David Fitz (Oct 12)

The CNS route is, I believe, one of the reasons that dasatinib is used in PH+ ALL. I don’t know a whole lot more though.
David.

by ColoradoGuy (Oct 11)

It can in very rare cases spread through the central nervous system (CNS) in which case Dasatinib is better in attacking it there. There are however, many, many other things that can cause this

by David Fitz (Oct 8)

Hi,
CML doesn't really spread in the traditional sense when you think of cancer more generally. But because it affects your blood it can cause problems around your body. For example, if your blood

by davidmoler08 (Oct 7)

Recently I have been having much more dizziness than usual. I even wake up with the spins really bad and can’t get up right away till they stop. I decided to see an ENT and after some crazy tests
Category: Side effects

Replies: 3

Last updated: 12 October 2024
Amanda Lax on 6 October 2024

Category: Uncategorised

Replies: 5

Last updated: 7 October 2024

Confusion!
by AlastairC (Oct 7)

Amanda do keep in touch either on the forum or you can send me a direct message using the envelope icon in the top line of the page.
If you were disagnosed in June you are just past 3 months so

by Amanda Lax (Oct 7)

Hi Alastair,

Thanks for your reply, i have to say i feel a lot better today , such a good forum for settling the fear a bit! I must have missed the just diagnosed page completely, it was just

by AlastairC (Oct 7)

Hi Amanda welcome.
I'd like to point you at this page https://cmlsupport.org.uk/section/just-diagnosed , especially the template questions to ask your consultant. Many people find getting an

by Amanda Lax (Oct 7)

Hi James,

Thanks so much for taking the time to do such a comprehensive reply, i think ive been concentrating on my white cell count alone, and ive realised that i have a lot more to think
Category: Uncategorised

Replies: 5

Last updated: 7 October 2024
johnw1001 on 29 September 2024

Category: Other conditions

Replies: 2

Last updated: 30 September 2024

Winter 2024 vaccines-UK
by johnw1001 (Sep 30)

Hi David

Looking at the leaflet on RSV it does not include the category "these with specific health conditions."
One dose does give protection for a number of years I believe?
I dont know if

by David Fitz (Sep 30)

Hi John,
I believe there are only two groups of people who are eligible for the RSV vaccine - the group you have highlighted, and anyone pregnant past 28 weeks.
Just having CML is not, as far as I

by johnw1001 (Sep 29)

Just a reminder that those in certain categories

-age related

-condition related such as blood cancers

qualify for Autumn /Winter 2024 Covid vaccines as from 3 October in UK
In
Category: Other conditions

Replies: 2

Last updated: 30 September 2024
johnw1001 on 16 September 2024

Category: Side effects

Replies: 1

Last updated: 23 September 2024

CML Horizons -Cardiovascular risks for CML patients on tkis
by Dustylloyd (Sep 23)

Hi John,
Always interesting any comments made by you, with interesting information about cml, I noticed in the last paragraph the comment about ecg check on certain tki medication, after, over 9

by johnw1001 (Sep 16)

Hi All,

If you look at the CML Horizons 2024 Videos etc posted here in "Home" you will come across a pdf /slide presentation presentation on Day 2 from an author Natalia Lopina on Cardio
Category: Side effects

Replies: 1

Last updated: 23 September 2024
Karinne on 20 September 2024

Category: Uncategorised

Replies: 7

Last updated: 23 September 2024

pcr result still undetected after 6 years in TFR
by Karinne (Sep 23)

Thanks. I took Sprycel for 4 years and was at MR4 after one year. Then I got a massive pleural effusion and had to stop my medication. I never went back on it because my pcr was stable at undetected

by Sav_5 (Sep 23)

Hi Karinne, that's great and hopeful for rest of us!! I wish you always remain Tfr! How long you were on TKIs and undetectable before you tried TFR?
Savvas

by Buzzm1 (Sep 21)

Karinne, I've been testing annually for the last five years although in 2021 I had a blip and retested.
Buzz

by Karinne (Sep 21)

Thank you Buzz. So good to hear about your 8 years coming!!!! How often do you test? I still do every 6 months.
Category: Uncategorised

Replies: 7

Last updated: 23 September 2024