iCMLf Conversation- Treatment of CML patients after failure of 2 TKIs

iCMLf- Highlights of EHA 2022

iCMLf Newsletter 2022

TFR in chronic myeloid leukemia: Lights and shadows. In several studies, NK cell numbers or functional subsets of NK cells were shown to be higher in patients who maintain TFR

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sandy craine on 23 July 2022

Category: Treating CML

Replies: 0

Last updated: 23 July 2022

PinnediCMLf Conversation- Treatment of CML patients after failure of 2 TKIs
by sandy craine (Jul 23)

Hear about current practices for third-line management of CML and get first-hand expert knowledge from:
Professor Andreas Hochhaus
Head of the Department of Hematology and Medical Oncology,
Category: Treating CML

Replies: 0

Last updated: 23 July 2022
David Fitz on 12 March 2022

Category: Uncategorised

Replies: 2

Last updated: 10 April 2022

Pinned“My CML” phone app now available
by Wendy Turner (Apr 10)

this will be super useful for all of us I think. thanks to everyone involved in creating this app.

by MartinZA (Mar 28)

Hi David
This is brilliant and looks super-useful! Thank you so very much for all the research - I remember answering the survey questions a while ago.
I'm going to download it immediately and look

by David Fitz (Mar 12)

Following from what started as a masters students questionnaire about managing CML, to the thought that a phone app could help, with further research into what patients needed, and help from this
Category: Uncategorised

Replies: 2

Last updated: 10 April 2022
David Fitz on 17 December 2021

Category: Uncategorised

Replies: 0

Last updated: 14 January 2022

PinnedHammersmith Hospital: Ask the CML Expert
by David Fitz (Dec 17)

Details of a fantastic new service Hammersmith Hospital in London are offering to all CML patients and doctors. A chance to engage with experts.
Category: Uncategorised

Replies: 0

Last updated: 14 January 2022
Mary Babbs on 12 August 2022

Category: Blood tests

Replies: 8

Last updated: 14 August 2022

Poor response to TKI'S ?
by scuba (Aug 14)

You should most definitely have your vitamin D level checked. This can be done at your doctors office or if labs in the U.K. let you order your own tests and give you the results, you don't need

by sandy craine (Aug 14)

Hi Norma,
I would restart Via D3 plus C and zinc if I were you. Re hair - thinning and texture. This can and does happen with age let alone health/treatment etc. However, since adding high dose

by Norma_55 (Aug 13)

Hi Mary
Ponatinib worked very well for me I got a result of 0.002% in a matter of couple of months.

by Norma_55 (Aug 13)

Hi there
I took 4,000 vitamin D3 for almost 2yrs prior to my diagnosis, which happened as a result of an emergency hospitalisation for sepsis, in 2020, I believe my Vitamin D3 my
Category: Blood tests

Replies: 8

Last updated: 14 August 2022
Wendy Turner on 11 August 2022

Category: About CML

Replies: 4

Last updated: 13 August 2022

Imatinib - why is the generic, Amarox different?
by sandy craine (Aug 13)

Wendy,
you can access the patient leaflet for Amarox (Imatinib) here.
https://www.medicines.org.uk/emc/product/13519/smpc
Pharmaceutical form
Film-coated tablet: White to off-white coloured, capsule

by EvaH (Aug 13)

Ive take the imatanib generics from sandoz, teva and two others i forgot, each looked different
Everything from big and white to small and green!

by Wendy Turner (Aug 13)

Hi, thanks so much for your help, I'll get in touch with my pharmacist.
Wendy

by RC Kirk (Aug 12)

You could try this pill identifier page: https://www.drugs.com/pill_identification.html

I think maybe they used to make them with the brown coating and have changed to white at some
Category: About CML

Replies: 4

Last updated: 13 August 2022
Victoria Parker on 5 February 2021

Category: About CML

Replies: 19

Last updated: 13 August 2022

Do you ever feel ‘normal’ on TKIs
by EvaH (Aug 13)

I'm not sure if this is helpful but after 5 years on tkis (imatanib in my case), I'm on trial tfr since Nov 2021. Since march 2022 i feel achy all the time, so it would seem that life without tkis

by DavidS (Aug 10)

Ive now been on it for 18th months at 500g a day.. to be honest I feel good on it, always take them with a meal, I find breakfast time good.. if you do get the runs then persist as it will

by sue. R (Aug 10)

I am switching in one day to Bosutinib. I hope I don’t have any issues.

by Rick B (Mar 20)

Victoria, sorry to hear about your fight with this new diagnosis. First the bad news, once your docs get it under control - and they will - you will probably never feel truly "normal"
Category: About CML

Replies: 19

Last updated: 13 August 2022
Tedro on 5 August 2022

Category: Side effects

Replies: 12

Last updated: 12 August 2022

pleural effusion
by Tedro (Aug 12)

Then I must find new Drs.
I await VA grant or deny to new care, particularly Dr Cortes.
Thank you.

by scuba (Aug 12)

https://www.drugs.com/dosage/dasatinib.html
https://ashpublications.org/blood/article/134/Supplement_1/4150/424373/P...
https://www.clinical-lymphoma-myeloma-leukemia.com/article/S2152-2650(16)

by Tedro (Aug 11)

Where can I read the different levels of Dasatinib/CML responses?
Eg, I am in Complete Cytogenic Response; I am not in Complete Molecular Response.
Plus, I have CLL. So I’m trying to figure

by Tedro (Aug 10)

Yesterday Pulmonary Dr wants chest another xray, depending on what he sees (remaining pe) then he will look for his idea of possible Chylothorax.
ct scan, etc.
if and when he gives ok/all clear to
Category: Side effects

Replies: 12

Last updated: 12 August 2022
snowman 35 on 8 August 2022

Category: Blood tests

Replies: 2

Last updated: 12 August 2022

Tfr has begun
by sandy craine (Aug 12)

fingers crossed for you. Keep taking those supplements no matter what!
Sandy

by Sherley (Aug 12)

That is great news!!! Keep us posted. Congratulations ❤️

by snowman 35 (Aug 8)

Hi all!

I have started tfr test since 27/6/2022

My first PCR -BCR ABL test after one month

27/7/2022 is undetectable!I take all the supplements that Scuba suggested me(vitamin d,
Category: Blood tests

Replies: 2

Last updated: 12 August 2022
rambler on 11 August 2022

Category: Blood tests

Replies: 4

Last updated: 11 August 2022

Low platelets, low WBC. First post
by rambler (Aug 11)

Hi Scuba,
Thank you for writing. Your explanation and words are very encouraging and comforting.
Your advice to start and stop therapy makes so much sense, as does having weekly blood tests to

by rambler (Aug 11)

Hello Sandy,
Thank you for replying. The decision to stop imatinib was my doctors. Other than my low blood results on both imatinib and bosutinib, I did not have any other side effects. I feel I am

by scuba (Aug 11)

Hi Paul,
I know what you are going through. I have been there and you will come through it!
In some sense, what is happening to you is "normal". I will explain and then offer a suggested

by sandy craine (Aug 11)

Hi Paul, welcome to this forum. Can I ask whether you took the decision to stop your therapy with imatinib, or it was your doctor who decided that you should stop therapy?
Sandy
Category: Blood tests

Replies: 4

Last updated: 11 August 2022
MartinZA on 26 July 2022

Category: Treating CML

Replies: 29

Last updated: 11 August 2022

Is a sudden transformation from MR4 to blast crisis possible?
by An (Aug 11)

Hi,
If possible(and if it is allowed) send the reports also to Hammersmith,because if it is another bone marrow issue,it might reflect in the biopsy result ,scuba /somebody else might know better

by kat73 (Aug 10)

Martin - Thanks very much for taking the trouble amidst your distraction to give us an update. I found myself sinking with the MDS possibility, but then rising with the challenge of a

by Rocky Mountain Gal (Aug 10)

Martin, you are so brave! Currently, I am not responding to treatment, and I was only diagnosed 9 months ago and am also under the 'average' age of 65 years at diagnosis. (A lady

by An (Aug 10)

Hi,
Thanks for the update during a harrowing time for you,go enjoy the safari,the good news is your bone marrow report is normal,I always thought any blood disorders will show up in bone marrow
Category: Treating CML

Replies: 29

Last updated: 11 August 2022
onekayaker on 2 September 2018

Category: Uncategorised

Replies: 18

Last updated: 10 August 2022

Please advise on Bosutinib 100mg Starting Sept 5 after failing on 100mg and 50mg Dasatinib
by sue. R (Aug 10)

Thanks, that good to hear. Yes it’s the shortness of breath is the reason.

by alison (Aug 10)

@sueR my husband has been on Bosulif 100 for two years with no side effects. He had lots of problems with shortness of breath on Sprycel 70 and then 50.
bosulif 100 is VERY low dose

by sue. R (Aug 10)

Awe, this is good news I start tomorrow on Bosutinib after being on Spyrcel for 5 years. Both is 100 mg.
only side effect from Spyrcel was tiredness but recently pleural effusion.

by sue. R (Aug 10)

Are you still on 100 mg, I am starting tomorrow having been on Spyrcel 100 for 5 years just start getting pleural effusion.
all blood work perfect, only side effect, I was a little
Category: Uncategorised

Replies: 18

Last updated: 10 August 2022
gdesposito on 5 August 2022

Category: Blood tests

Replies: 2

Last updated: 9 August 2022

Cause for concern?
by gdesposito (Aug 9)

Thank you. Yeah that’s the trick, trying find that sweet spot, keeping you in MMR or better while maintaining blood levels.

by ColoradoGuy (Aug 7)

Not much difference in these two results. I would consider regular bounce. It is great news that you are trending down overall. I would keep a close eye on blood levels and use the minimum mg TKI

by gdesposito (Aug 5)

First time posting

Diagnosed 9/2/2020
BCR-43.66% Started on Tasigna 600mg/day
stopped on 12/24/20 due to elevated liver enzymes, low WBC and low platelets(29,000)
started on
Category: Blood tests

Replies: 2

Last updated: 9 August 2022
Anonymous (not verified) on 30 December 2014

Category: Uncategorised

Replies: 5

Last updated: 8 August 2022

Bosutinib
by sue. R (Aug 8)

Thanks for sharing this, I was on Spyrcel for 5 years but due to pleural effusion I am changing to Bosutinib.
hope I don’t get thining hair as my has just grown back.

by Anonymous (Jan 1)

Happy New year to you Lusia. Thank you for replying I am feeling a little better about things. Some of your side effects have been part of my concerns..diarrhoea-nausea also the skin problems..I

by Anonymous (Jan 1)

Happy New Year. Thank you for replying. I am glad to read that you have not had many issues with this drug. I am feeling a little better about things. I would like to contact you directly and will

by karen (Dec 31)

Hello
I have been on Bosutinib for over a year and can honestly say it has been the best drug of all five. I have been lucky with the gastric issues (not suffered any) although at 300 I did have
Category: Uncategorised

Replies: 5

Last updated: 8 August 2022
Libby on 11 June 2022

Category: Side effects

Replies: 2

Last updated: 8 August 2022

Hypertension
by sue. R (Aug 8)

Hi, I am switching onto Bosutinib from Spyrcel - was on for 5 years because of Pleural infusion. Plus breathing issues. I also show undetected.
all blood work perfect
echo ( heart)

by johnw1001 (Jun 13)

Medium and long term it is quite important to control your blood pressure especially for the heart.Exercise is a an approach that might help but perhaps effective medication is usually the solution.

by Libby (Jun 11)

I'm on Bosutinib and have really high blood pressure. My latest reading was 180/100. Has anyone else on bosutinib suffered from hypertension? Before I was diagnosed (4.5 yrs
Category: Side effects

Replies: 2

Last updated: 8 August 2022
Shekhar on 5 August 2022

Category: About CML

Replies: 5

Last updated: 8 August 2022

CML recovery stage and GOUT
by Vikram (Aug 8)

Congratulations for TFR
Best wishes.... For TFR
Thank you for reply

by Shekhar (Aug 8)

Thank You Vikram, by BCR details
Sep 8, 2015 0.0379%
Jul 1, 2016 0.0012%
Jan 5, 2018 0.0097%
Sep 28, 2018 0.0065%
July 7, 2019 0.0059%
Feb 10, 2021 0%
Dec 11,

by Shekhar (Aug 8)

Thank You, As per the doctors after stopping Gleevec. In some cases it increase the level of Uric acid in the body.

by Vikram (Aug 7)

Hii Shekhar
Before tfr your bcr ??
How many year undetactable??
Congratulations for TFR
Category: About CML

Replies: 5

Last updated: 8 August 2022
SS86 on 6 August 2022

Category: Reproductive health

Replies: 4

Last updated: 7 August 2022

Is there a possibility to be off Dasatinib and try to concieve ?
by David Fitz (Aug 7)

For women? It’s perfectly advisable once you stop taking dasatinib assuming your numbers are low enough to support TKI withdrawal. As Scuba says, dasatinib has a short half life so it is

by scuba (Aug 7)

The half life of dasatinib in the body is < 5 hours
https://pubmed.ncbi.nlm.nih.gov/18420784/

by SS86 (Aug 6)

Thanks Scuba. Your responses are awaited and are always reassuring.
Also, do you know how long the medicine needs to be stopped for it to get out of body before the plan to have a baby
Thanks

by scuba (Aug 6)

Yes. I know several women with CML who were taking dasatinib, stopped therapy, conceived and gave birth to healthy babies (twins in one case!).
Their CML did start to rise again, but stayed in
Category: Reproductive health

Replies: 4

Last updated: 7 August 2022
Rocky Mountain Gal on 23 July 2022

Category: Blood tests

Replies: 1

Last updated: 6 August 2022

Fasting and CBC draw
by Pojo (Aug 6)

I used to fast a lot. It seemed to help even before a blood draw. But not sure the results are definitive with fasting. For one thing I know when I did fast under imatinib it actually was not good

by Rocky Mountain Gal (Jul 23)

I am finishing a 3 day fast today. Not as bad as I thought! Question: Should I go in for my blood draw before or after I break my fast?
Category: Blood tests

Replies: 1

Last updated: 6 August 2022
Sd on 5 August 2022

Category: Side effects

Replies: 2

Last updated: 5 August 2022

altitude, imatinib and CML
by Sd (Aug 5)

Thanks for replying. The visit was good. Beautiful place indeed

by Rocky Mountain Gal (Aug 5)

Completely normal response to the change in altitude for anyone, with or without CML. I live at 5200' and am constantly telling friends who visit to give themselves time to adapt.

by Sd (Aug 5)

Does anyone have any information about the affects of altitude change? I was diagnosed 3 years ago. I am very well controlled on 200 mg of imatinib daily. A recent trip to Denver left me
Category: Side effects

Replies: 2

Last updated: 5 August 2022
Rocky Mountain Gal on 16 July 2022

Category: Getting help

Replies: 18

Last updated: 4 August 2022

I’m trying to not freak out
by Rocky Mountain Gal (Aug 4)

Thanks. I'm still going in for bi-monthly blood draws, so I'll see if my doc will add it. How long did it take for you to reach 1%?

by scuba (Aug 4)

In Colorado you can schedule a blood draw at any Quest diagnostics for a vitamin D test. Or you can visit your doctor and do the same.

by Rocky Mountain Gal (Aug 4)

Thanks for the encouraging words, Scuba. I am taking 125 mcg (5000IU) of vitamin D3K2 every day and walking my dog in shorts and a t-shirt for sun exposure every morning. How do I

by scuba (Aug 4)

At diagnosis I was at 155% PCR (> 100% is possible because of the way the test is calibrated to the abl gene). I was borderline blast crisis and had a bunch of other genetic abnormalities going
Category: Getting help

Replies: 18

Last updated: 4 August 2022
Dustylloyd on 21 March 2019

Category: Blood tests

Replies: 25

Last updated: 3 August 2022

Alcohol and Cml
by Rocky Mountain Gal (Aug 3)

I was taking milk thistle prior to my diagnosis, but was told to stop. That was in the early days, when they had me on multiple drugs.
Is there a resource for checking supplements against

by onekayaker (Aug 3)

Long time to get results!!! The waiting is the worse.

by scuba (Aug 3)

In fact, ANY amount of alcohol is bad for you. I was reading this over a glass of scotch:

https://www.theguardian.com/society/2021/may/18/any-amount-of-alcohol-co...

Other research I came

by David Fitz (Aug 3)

For the avoidance of doubt, for a patient who is responding well to their treatment the advice about alcohol consumption is the same for the general population.
Everything in moderation, including
Category: Blood tests

Replies: 25

Last updated: 3 August 2022