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nicolem on 9 January 2022

Category: Blood tests

Replies: 5

Last updated: 10 January 2022

BCR results trending in the wrong direction
by David Fitz (Jan 10)

Great - that means it’s international standard, which makes it simple to compare to treatment goals.
Without that there can be a bit of extra maths required.
David

by nicolem (Jan 9)

Hi David,
I just double checked (we are in the US if that changes anything) and next to her results it does say "BCR-ABL1/ABL1 (% IS)" which I assume stands for International Scale? I

by David Fitz (Jan 9)

Purely anecdotal - but there was a poll on a Facebook group recently about PCR numbers following vaccinations and there didn’t seem to be any reason to think the vaccinations affected results

by nicolem (Jan 9)

Hi David,
Thanks so much for your reply! I do believe she is adhering to her medication, although I know I can't be certain as I don't live with her. But she is very focused on keeping the
Category: Blood tests

Replies: 5

Last updated: 10 January 2022
Nana Simone on 16 September 2018

Category: Side effects

Replies: 21

Last updated: 9 January 2022

CML & Depression
by (Jan 9)

It's unfortunate...I hope you will be able to end your depression soon. For a long time, I was depressed because of my helplessness. When I was a child, a girl was raped in front of my eyes. I

by chrissie (Oct 22)

Hi Nana
As well as meditation what about trying Tai Chi or Yoga? I found Tai Chi kept me sane on diagnosis 9+ years ago - and I still attend my class. It's therapeutic effects are well known in the

by EvaH (Oct 18)

Just to say that I agree meditation can help and if you are in the uk and resources are few, vipassana meditation offers donation based residential courses in meditation, although you must comit to

by Nana Simone (Sep 19)

Hi Dawn,
Thank you for your input, it’s reassuring to hear other people’s truth whether we have differences or not.
From what I gather it seems I need to find the right support, but it’s
Category: Side effects

Replies: 21

Last updated: 9 January 2022
Alan Locke on 9 January 2022

Category: Drug-drug interactions

Replies: 0

Last updated: 9 January 2022

Chimeric Antigen Receptor T-Cell Therapy
by Alan Locke (Jan 9)

Hi everyone,
Hope 2022 brings hope and joy!
I was fascinated by a BBC news report on CART therapy. They generalised that this therapy is for Leukaemia.
Have any members of the forum
Category: Drug-drug interactions

Replies: 0

Last updated: 9 January 2022
Myra on 31 December 2021

Category: Children & young people

Replies: 6

Last updated: 8 January 2022

PCR result
by Myra (Jan 8)

Hi Buzz,

My son had very good response with Dastanib in the first pcr test. The first 3 months value was just 1 percent then next one was 0.4 and then 0.14. He was in college and was not

by Buzzm1 (Jan 8)

Myra, when you have time please post your son's CML history showing test dates and results. I try to fully document case histories for future reference. After being in a low level

by Buzzm1 (Jan 4)

Knowing that 0.142 presents no real danger from the CML, I would be hesitant to switch to another TKI unless it was at a much lower dosage, i.e. Sprycel 50mg. All TKIs have side -effects.

by Myra (Jan 4)

The doc wants to wait for the next test and if it doesn't go down she will try another tki.

He doesn't follow healthy diet and I think that maybe the reason or maybe resistance to this.
Category: Children & young people

Replies: 6

Last updated: 8 January 2022
Ryn on 13 October 2021

Category: Blood tests

Replies: 14

Last updated: 8 January 2022

Starting TFR after 5 years on Dasatinib/4.4 years DMR
by Vikram (Jan 8)

Why younger people not successful in TFR?
Any reason?

Ya only mith??
Younger people immunity better than old people right?
What's reason??
After December to continue off drug (no dose) (000

by Ryn (Jan 1)

Thank you for the advice! I think I'll regain undetected fairly quick. When I was first diagnosed I was at 50.5 and got down to less than .0032 in about 9 months after starting 100mg sprycel. I

by Ryn (Jan 1)

Thank you, Scuba! Definitely going to talk to my doctor about a lower dose.

by Ryn (Jan 1)

Ng/ml. Thank you for the resource!
Category: Blood tests

Replies: 14

Last updated: 8 January 2022
MANNI OBEROI on 6 January 2022

Category: Blood tests

Replies: 0

Last updated: 6 January 2022

Eosinophils increase
by MANNI OBEROI (Jan 6)

Eosinophils is 10 percent....is ther is any problem or not
Category: Blood tests

Replies: 0

Last updated: 6 January 2022
Rick B on 4 January 2022

Category: Uncategorised

Replies: 5

Last updated: 5 January 2022

CML & Omicron
by Rick B (Jan 5)

Sandy,
Thank you. Very informative.
Rick

by sandy craine (Jan 5)

Hi Rick,
Congratulations on your 50th wedding anniversary. For data on the omicron variant, I can only point you to the well researched and communicated Youtube videos from Dr John Campell ... for

by Rick B (Jan 5)

Alastair,
Thank you, and I am glad your COVID Omicron symptoms were no big deal. And congratulations on reaching undectable again. I hope to join you there soon!
I got mixed messages yesterday from

by AlastairC (Jan 5)

Hi Rick, I think I have one datapoint for you - me.
I am on 200mg Imatinib currently. I failed TFR after 17 months in October 2020, went back to 400mg imatinb, and regained 0.000% BCR-ABL in a few
Category: Uncategorised

Replies: 5

Last updated: 5 January 2022
HelenS on 31 December 2021

Category: Uncategorised

Replies: 9

Last updated: 4 January 2022

4th dose Covid vaccination
by Christine R (Jan 4)

Actually I did the same and was amazed how they now seem to know about 3rd primary and Boosters. Just showed the letter and was asked what my condition was. He typed it in and waived me

by Roza (Jan 4)

Hi, I went into a walk-in centre today along with a letter from my consultant and just had to tick a few boxes on a paper form which they will update later on the system. Very straightforward and

by HelenS (Dec 31)

Christine. Chaos it is. But I think the good thing is that walk in centres are all about getting jabs in arms and that is what I planned to do come the New year...take my NHS vulnerable letter(s)

by Christine R (Dec 31)

I think the main problem in the UK is the nhs website says we are eligible for a 4th but cannot book online or via 119. The only option is via a GP or to go to a walk in centre with proof we are
Category: Uncategorised

Replies: 9

Last updated: 4 January 2022
RC Kirk on 10 May 2018

Category: Uncategorised

Replies: 5

Last updated: 3 January 2022

Is there a way to flag a thread as spam?
by David Fitz (Jan 3)

Thanks Sandy,
There was a second barrage this morning unfortunately. All swiftly gone though!
David.

by sandy craine (Jan 3)

I think David may be away, but I logged on yesterday I spent some time manually deleting that spam attack! We will try to get on top of this in the New Year, we have a few things to sort out with

by RC Kirk (Jan 3)

Thanks for taking the trash out this morning before it had time to get too stinky!

by RC Kirk (May 11)

Very good! David, thanks for doing the "weeding" so we don't get lost in the spam weeds.
Kirk
Category: Uncategorised

Replies: 5

Last updated: 3 January 2022
rebeccacrosby on 15 December 2021

Category: Side effects

Replies: 7

Last updated: 2 January 2022

Tasigna/elevated liver enzymes
by rebeccacrosby (Jan 2)

Thank you. I found it very helpful to read your posts about dose reduction before I asked my dr.

by Buzzm1 (Dec 31)

Rebecca, when it comes to lessening side-effects, nothing even comes close to reducing dosage. Almost all CML patients do fine on reduced dosage so not to worry. Keep any remaining 150

by rebeccacrosby (Dec 30)

Thank you for your reply. I am encouraged by your success at only 200mg. My doctor reduced my dosage to 400mg and that has made all the difference. I feel good and my liver enzymes and

by Zaccar (Dec 30)

Hi,
Also on tasigna for a year now. I have the same issue. I'm at 1.4, my pharmacist called me alarmed by the fluctuations. Mind you my doctor hasn't even brushed the subject .I didn
Category: Side effects

Replies: 7

Last updated: 2 January 2022
mil on 15 December 2021

Category: Uncategorised

Replies: 22

Last updated: 1 January 2022

Booster dose, pfizer covid
by Buzzm1 (Jan 1)

Alastair, don't let that stop you from further lowering your dosage to 100mg. It will further lessen, if not eliminate, any lingering side-effects.

by AlastairC (Dec 31)

Hi Buzz, imatinib dose reduction does not correlate with improved WBC for me. I have known I was neutropenic for over 35 years, and that has probably been the case for longer than that,

by Buzzm1 (Dec 29)

Alastair, with regards to your neutropenia, a lower Imatinib dosage would benefit you. I'm willing to wager that Imatinib 50mg/day will keep you undetected, that's after first lowering

by AlastairC (Dec 28)

Scuba, yes BCR-ABL undetected but WBC around 1.8, Neutrophils 0.8 on a good day. My neutropenia was identified in the late 1980s and was made slightly worse by imatinib since CML Dx 2007. I've
Category: Uncategorised

Replies: 22

Last updated: 1 January 2022
Skeltonn on 20 February 2019

Category: Treating CML

Replies: 3

Last updated: 31 December 2021

Sprycel and weight gain
by Myra (Dec 31)

My son gained weight in the last few months. He is on Dastanib from a year now. But not sure is it from the medicine or his eating habits.

by Chuckster (Feb 25)

No. Just the opposite.
I have experienced weight- loss of approx 20 lbs: From 195 lbs to around 175 lbs.
From Feb 2018 to Feb 2019
Holding around 175 lbs for the last 3 months.
Had to stop the 100mg

by Bill Miller (Feb 21)

Yes and yes. I had terrible fatigue on 140mg. I also waxed and waned between diarrhea and constipation, which amplified the fatigue. And I was only on at that dose for 3.5 weeks. I did also gain

by Skeltonn (Feb 21)

Thank you for the reply. I have gained about 30 pounds in the last 12 months. I am 12 months from first being diagnosed and still trying to navigate this disease.
Category: Treating CML

Replies: 3

Last updated: 31 December 2021
ssss on 29 December 2021

Category: Children & young people

Replies: 8

Last updated: 31 December 2021

Plateau in results: update
by Buzzm1 (Dec 31)

Roza, those are a few of my own observations over the last five years.
Two things I quickly noticed about plateaus at low CML levels:
1. they seemed impervious to gradual dosage reduction or

by Roza (Dec 31)

Hi Buzz,
Are you aware of any study or data that supports evidence of a reduction in the IS ratio after a plateau ?
If there is good scientific evidence of this then it be would be helpful in making

by kat73 (Dec 31)

It is not true that you can't go back to imatinib after switching to dasatinib. Also wanted to add to my other reply that I've been on 20 mg dasatinib for about 4 years.

by Buzzm1 (Dec 31)

ssss, I had a reason.for asking you to post your son's test dates and results.
After a CML patient has either been undetected, or plateaued, at levels below 1.0, for a year, or so, it is
Category: Children & young people

Replies: 8

Last updated: 31 December 2021
johnw1001 on 12 August 2021

Category: About CML

Replies: 10

Last updated: 31 December 2021

CML survival rates
by johnw1001 (Dec 31)

Hi Roza
Thanks for posting with some afterthoughts.
Yes it is surprising to see the NHS site come out with such low 5 year survival rates.Googling" CML survival rates", what seems to be

by Roza (Dec 30)

Hi John,
Late reply....
I did reflect on the following after my Dx.
In the UK newly diagnosed CML patients are likely to look for and read the NHS listed survival rate, it being a trusted source.

by johnw1001 (Sep 6)

Hi Eva,
The book by Jessica Wapner is truly a good read and an excellent piece of medical journalism which is not beyond the understanding of most patients with even a minimal science background.

by EvaH (Sep 5)

Tki have only been commercially available since 2000s, they have been knocking around in some form since the late 80s.
"The Philadelphia Chromosome" is a recommended read on the full history,
Category: About CML

Replies: 10

Last updated: 31 December 2021
Zaccar on 30 December 2021

Category: Treating CML

Replies: 2

Last updated: 30 December 2021

Undetectable with 200mg tasigna in 12 months.
by Zaccar (Dec 30)

Hi,
Great suggestion. With one pill a day I have struggled less and less with the fasting. But that's something i'll discuss with my next doctor. I'm planning to change to a

by sandy craine (Dec 30)

Hi Zaccar, thanks for your post which is honest and really interesting. One question I do have is - given that you travel such a lot, would another 2Gen TKI be easier for you - one without a fasting

by Zaccar (Dec 30)

Howdy,
I was diagnosed last year with april 2020 with CML, my treatment is working very well at present. I didn't want to be one of those people that used the site when they needed the help then
Category: Treating CML

Replies: 2

Last updated: 30 December 2021
Buzzm1 on 17 December 2021

Category: Uncategorised

Replies: 12

Last updated: 29 December 2021

False Alarm
by scuba (Dec 29)

My bcr-abl reports read "undetectable".
For several years before I would receive PCR reports of bcr-abl < 0.01% and then it went to "undetectable". I remained at "

by kat73 (Dec 29)

Thanks, Scuba, for the every other day method. Glad to hear you're still TFR. Are you actually getting back 0.000 undetectables?

by scuba (Dec 27)

Kat - When I decided to attempt TFR, I first decided to cut my 20 mg daily dose to every other day. And then every third day. Something to consider when you decide to try TFR. I did this as a way to

by Buzzm1 (Dec 27)

Thanks Israel. The LLS discussion forum recently changed software again, unfortunately not for the better; in doing so internal bookmarks changed and many profiles were lost so my personal
Category: Uncategorised

Replies: 12

Last updated: 29 December 2021
ssss on 27 December 2021

Category: Children & young people

Replies: 11

Last updated: 29 December 2021

Plateau in results, need guidance
by ssss (Dec 29)

Hi all,
My son's doctor suggested dasatinib 100 instead of bosutinib.

Hopefully he has no side effects with this.

We will be doing an IRMA test tomorrow just to be sure of imatinib

by sbp03 (Dec 28)

Hi, I'm also have talassemia beta trait, hemoglobin around 10 (used to be around 12,5 before CML-Imatinib) and a slight increase of iron in the body. Since March, 2018 on Imatinib 400 gr. and

by ssss (Dec 28)

Thanks for your helpful reply. I will definitely post updates. Hopefully the doctor starts him on a lower dosage.

by Buzzm1 (Dec 27)

ssss, at levels below 1.0, CML presents no real danger to a patient's health. One of the biggest mistakes oncs/hemas make is to prescribe a super-high TKI dosage, when CML is below 1.0, in
Category: Children & young people

Replies: 11

Last updated: 29 December 2021
sandy craine on 27 December 2021

Category: Uncategorised

Replies: 0

Last updated: 27 December 2021

iCMLf update -Michele Baccarani 1942 -2021
by sandy craine (Dec 27)

Vale Michele Baccarani - 1942-2021
It is with great sadness that we share the news of the death of Professor Michele Baccarani. A friend and colleague to so many in the CML community and beyond
Category: Uncategorised

Replies: 0

Last updated: 27 December 2021
sandy craine on 22 December 2021

Category: Other conditions

Replies: 2

Last updated: 27 December 2021

UK SECURES MILLIONS MORE ANTIVIRALS TO HELP FIGHT OMICRON
by sandy craine (Dec 27)

Thanks for this link - If anyone on TKi (and/or other) therapies is considering adding anti-viral medications, it is obviously strongly recommended that you read the details provided and assess the

by Heidi S (Dec 27)

I am not saying that this is an end-all-be-all… but dastinib and nilotinib are listed as having side effects with the most effective drug for omnicron. (Page 10)
https://www.fda.gov/media/

by sandy craine (Dec 22)

**FOR IMMEDIATE RELEASE**
UK signs contracts to buy a further 4.25 million courses of antivirals for the NHS

Monumental deals have been accelerated to combat the Omicron variant and protect
Category: Other conditions

Replies: 2

Last updated: 27 December 2021
Christine R on 11 March 2021

Category: Uncategorised

Replies: 5

Last updated: 24 December 2021

Response to 1st dose of vaccine by blood cancer patients. BBC this morning
by (Dec 24)

Many people wonder about the reaction to the first dose of the vaccine in blood cancer patients—some cancer treatments, like chemotherapy or radiotherapy, lower immunity. COVID-19 vaccines may

by Christine R (Mar 12)

Thanks Sandy
There is a lot more information on twitter about the study which included a youtube video of one or the research scientists. Participants were elderly and eligible for vaccination

by sandy craine (Mar 12)

Hi Christine, remember that this is about 'immunocompromised' cancer patients... Cancer is an umbrella term and some cancers require quite invasive treatment with chemotherapy agents and/or

by Christine R (Mar 11)

Thanks David.
No specifics of the blood cancer but does make you wonder where that leaves us. Most of us will have had the first dose over 3 weeks ago so does it mean we go back to
Category: Uncategorised

Replies: 5

Last updated: 24 December 2021