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Nimbus2 on 9 March 2020

Category: Uncategorised

Replies: 5

Last updated: 12 April 2020

Dizziness not vertigo
by Nimbus2 (Apr 12)

Thank you for your description this is helpful.
My GP upon investigation noted the following:
Coded entry O/E - gait normal (2991.)
Coded entry O/E - no nystagmus (2BN1.)
Subsequently, my

by thomas.c (Apr 12)

Lots of dizziness unfortunately. I have been taking 100mg dasatinib for 2 years, i switched to 70mg about a month ago but no change in side effects yet. Heat waves like i'm feverish all the time

by Felix (Mar 9)

Hi, I refused to go on 100 mg ,just because my Doc who isn't a specialist said it was the norm ,research shows now that it too toxic and can cause all sorts of problems .So I started on 50

by Nimbus2 (Mar 9)

Thank you, Denise. This is helpful. My B12 is normal, but still your experience indicates that the dizziness may go away. For now, I am to remain on 100 mg. If I respond adequately then my dosage
Category: Uncategorised

Replies: 5

Last updated: 12 April 2020
alexmcpee on 10 April 2020

Category: Uncategorised

Replies: 6

Last updated: 11 April 2020

Alcohol and drinking a little more than a “few”
by alexmcpee (Apr 11)

Thanks mate that’s what I thought. Everything in moderation as they say!
Alex

by alexmcpee (Apr 11)

Thanks David,
I was almost MMR at 18months @0.118% back in October, I have bloods taken on Monday which will be my 24 month PCR and hopefully I’ll be officially MMR.
Little anxious about going

by alexmcpee (Apr 11)

Hi John,
Yes I am on Nilotinib so will make sure I don’t drink during my fast.
And glad to know that it doesn’t appear to reduce uptake of our drugs.
All the best
Alex

by David Fitz (Apr 10)

Besides the nilotinib fasting, there's really no particular issue other than general health to consider.
I am certainly guilty of having more than might be recommended - I think at the moment a
Category: Uncategorised

Replies: 6

Last updated: 11 April 2020
cousineg2 on 11 April 2020

Category: Treating CML

Replies: -1

Last updated: 11 April 2020

Hematopoietic stem cell transplantation using single UM171-expanded cord blood

Category: Treating CML

Replies: -1

Last updated: 11 April 2020
Ontasigna on 11 December 2019

Category: Treating CML

Replies: 17

Last updated: 9 April 2020

High WBC - cml progressing??
by Tricky109 (Apr 9)

Hi Brett can I ask how you are getting on now with lymphocytes?

by Tricky109 (Feb 21)

Brett can i ask please how you are getting on now? Im in exact same position.

by Ontasigna (Dec 18)

Hi Korila,
Yes, My first CBC showed TLC - 16000.
I had to get CBC again at NABL accredaited lab to be sure on the count. That's when I got 11.53 with abs lym count : 3.54 dated 12 Dec
On 17th Dec I

by Brett0503 (Dec 17)

I’m in the same boat with my lymphocytes increased to 6.78 when I had bloodwork last week with wbc count of 12.8
my next bloodwork is on monday 12/23.
I read online that Dasatinib induces
Category: Treating CML

Replies: 17

Last updated: 9 April 2020
Karthikeyan on 9 April 2020

Category: Blood tests

Replies: 1

Last updated: 9 April 2020

To scuba and others about cbc
by scuba (Apr 9)

Many who participate on this forum can provide answers and comments to your questions. A variety of answers can help you decide what is a good course of action that you may want to take.
Not taking

by Karthikeyan (Apr 9)

Hi, i was diagnosed exactly five years ago. But i have very little knowledge about cml as i have completely surrendered myself to my oncologist. So i kindly request scuba and other forum members to
Category: Blood tests

Replies: 1

Last updated: 9 April 2020
teddyb on 8 April 2020

Category: Uncategorised

Replies: 4

Last updated: 9 April 2020

Sprycel and antihistamines
by teddyb (Apr 9)

Thank you both Hannibellemo and snoman 35, very helpfull information :)
Wow alternate day 20mg, that sounds great in terms of side effects!

by snowman 35 (Apr 9)

Ι have allergie to especially this season. I take aerius 5mg(desloratadine). My doc told me that ia can take it every time I have symptomes but not to overdo it... It means do not take more than one

by snowman 35 (Apr 9)

Ι have allergiebto especially this season. I take aerius 5mg(desloratadine). My doc told me that ia can take it every time I have symptomes but not to overdo it... It means do not take more than one

by hannibellemo (Apr 8)

teddyb, I have been taking one kind of allergy medicines or another for years. I switch occasionally because they seem to lose effect after awhile. I've been on Allegra (generic) for almost two
Category: Uncategorised

Replies: 4

Last updated: 9 April 2020
snowman 35 on 30 March 2020

Category: Drug-food interactions

Replies: 3

Last updated: 9 April 2020

Is stevia(sweetener) OK with sprycel?
by snowman 35 (Apr 9)

Thanks a lot Hanibellemo for your response! 😊

by hannibellemo (Apr 8)

Hi, snowman, I have two cups of espresso every morning with a packet of stevia in each. I've been doing this since way before my dx in 2009 and so far so good. :) I'm pretty sure this will

by alexmcpee (Apr 4)

I believe EVERTHING is ok within reason just avoid the usual suspects grapefruit etc. But I believe you would have to eat copious amounts for that to be an issue. Never liked it personally so easy

by snowman 35 (Mar 30)

I try to have a balanced diet but quite often I need to eat something sweet(chocolate, piece o cake etc) I know that stevia instead of sugar (e.g. eat chocolate with stevia instead of sugar) is a
Category: Drug-food interactions

Replies: 3

Last updated: 9 April 2020
scuba on 25 March 2020

Category: Uncategorised

Replies: 5

Last updated: 8 April 2020

Coronavirus perspective
by scuba (Apr 8)

To: Davewell
I want to offer an apology. Sometimes my confidence gets ahead of me.
https://www.wsj.com/articles/for-all-its-coronavirus-blunders-italy-offe...
Covid-19, as it turns out, is one nasty

by davewell (Mar 25)

As I said, there might be a point calling this a flu, scientifically speaking.
What I can't agree with is:
As a society we are ripping ourselves apart economically and scaring the heck out of

by scuba (Mar 25)

Davide,
https://www.telegraph.co.uk/global-health/science-and-disease/have-many-...
I am very sad for anyone that has a compromised immune system and then is exposed to this virus.
More to your

by davewell (Mar 25)

Scuba, you might be right in calling this something like a flu, but the effects are quite distinct.
In Bergamo, where the virus could spread undisturbed, because the local companies did not want to
Category: Uncategorised

Replies: 5

Last updated: 8 April 2020
sandy craine on 3 April 2020

Category: Other conditions

Replies: 3

Last updated: 8 April 2020

Cytokine Release Syndrome
by hannibellemo (Apr 8)

This is an interview from a New York pulmonologist currently recovering from Covid-19 and his experience with a cytokine storm. If dasatinib does offer any protection from this should any of us be

by sandy craine (Apr 3)

Hi Scuba,
Yes, exciting for the future of CAR-T infusions used fo acute leukaemia etc. as CRS has been a real problem from the start. But if this pans out from the mice model and has the same effect

by scuba (Apr 3)

This is stunning -thanks Sandy!

by sandy craine (Apr 3)

For those patients treated with dasatinib, I was sent a very interesting paper that was published in July 2019 - Please note that this research study was conducted on a mouse model. Even so, it is
Category: Other conditions

Replies: 3

Last updated: 8 April 2020
Damian Gabilondo on 3 April 2020

Category: Uncategorised

Replies: 6

Last updated: 7 April 2020

PCR 22 months. Now worried
by Damian Gabilondo (Apr 7)

Thank you very much David, I understand that there is nothing to worry about, very easily it may be a variation of the study's own error, I saw that there are many laboratories that do not even

by David Fitz (Apr 7)

Hi Damian,
You'll find nearly everything you ever wanted to know about PCR tests in out booklet:
Quantitative Reverse Transcription Polymerase Chain Reaction: A primer for patients
To answer

by Damian Gabilondo (Apr 6)

Thanks again David, I understand from what I have read that the margin of error is 0.5, so the difference is very far from that.
but I have a question following my PCR path
DX 03/13/2018 58% (

by David Fitz (Apr 5)

I try to not worry when I have the ups - and also not celebrate the downs too much either.
2 tests ago I was 0.001%, last one 0.08%. The pessimist says that’s an 800% increase. The
Category: Uncategorised

Replies: 6

Last updated: 7 April 2020
Karthikeyan on 6 April 2020

Category: Blood tests

Replies: 1

Last updated: 6 April 2020

To scuba about pcr result
by scuba (Apr 6)

It means you are going to live a very long life.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4786836/
Just an FYI : patients often show initially both p210 and and to a much lesser degree p190

by Karthikeyan (Apr 6)

HI,

RESULT P210 (b3a2, b2a2) major transcript Detected

P190 (e1a2) minor transcript Not detected P230 (c3a2) micro transcript Not detected Observed copies of ABL1 163664
Category: Blood tests

Replies: 1

Last updated: 6 April 2020
Justine on 31 March 2020

Category: Blood tests

Replies: 3

Last updated: 2 April 2020

Article on CML lab testing
by kali (Apr 2)

Thank you for sharing this great article.

by alexmcpee (Apr 1)

Wonderful write up. And very informative.
Thank you
Alex

by scuba (Mar 31)

Justine - Thanks for the link. Excellent summary.

by Justine (Mar 31)

My brother, who is a pathologist in the US, sent this article. It may be of interest.

https://www.captodayonline.com/in-cml-bcr-abl-monitoring-takes-on-new-im...
Category: Blood tests

Replies: 3

Last updated: 2 April 2020
johnw1001 on 1 April 2020

Category: Other conditions

Replies: 3

Last updated: 1 April 2020

Are ABL kinase inhibitors potent inhibitors of Covid 19
by gof (Apr 1)

There is a new study on SARS2
https://twitter.com/MattFrieman/status/1243622102294392832?s=19
It shows in vitro test with imatinib and other 49approved drugs. It includes theirs toxicity.

by johnw1001 (Apr 1)

Hi Alex,
Thanks for reading my post and for you comments.Yes as time as gone on from the introduction of Glivec/Imatinib back in the early 2000 s the applications have increased and one can see this

by alexmcpee (Apr 1)

Very interesting! I read something similar a while ago about imatinib. These TKIs seem to have multiple applications. Still I’ll be exercising extreme caution while this goes on.
Alex

by johnw1001 (Apr 1)

Hi All,
I have found a few articles which explore the subject of whether any existing drugs and in particular any of the tki s used in CML treatment could have been repurposed to have treated the
Category: Other conditions

Replies: 3

Last updated: 1 April 2020
Karthikeyan on 29 March 2020

Category: Uncategorised

Replies: 7

Last updated: 1 April 2020

Are cml survivors eligible for Government jobs
by Karthikeyan (Apr 1)

Thank you sir. I read many articles about court judgements. It clearly states everyone have equal opportunities.

by AlastairC (Mar 31)

Hi
I was working in the public service in UK when I was diagnosed. In UK there is legislation in the Equality Act 2010 which makes it illegal for an employer to discriminate against an employee or

by Karthikeyan (Mar 30)

Hello, anybody have any idea regarding this. Scuba air, Sandy ma'am.

by Vikram (Mar 29)

Only mentions...
After pass exam
medical test...
CBC REPORT,
And 3-4 report.....
Last visited
I asked my doctor
After undertactable pcr report...
CBC REPORT diagnoses patient is CML
Doctor : no
Category: Uncategorised

Replies: 7

Last updated: 1 April 2020
Helenabrown on 30 March 2020

Category: Uncategorised

Replies: 10

Last updated: 31 March 2020

How to get nilitonib when appointment canceled
by Helenabrown (Mar 31)

Meds will be delivered to house ,fingers crossed. We spoke to staff this morning at haematology clinic.

by Nimbus2 (Mar 31)

In Birmingham, there is a "prescribing nurse" who is qualified to write prescriptions for TKIs. I was told by my consultant that if ever I run short of TKIs, I can get in touch with

by Diane CW (Mar 31)

Yes that is the same for me as in am also in the UK, so the hospital pharmacy should be able to speak to the haematologist for you if you are having issues contacting him/her.
I too have had to

by alexmcpee (Mar 30)

I have had this problem almost every single month for nigh on 2 years, I had to chase chase chase and chase oh and chase. I‘d sometimes get down to 3 days supply of Nilotinib before they came
Category: Uncategorised

Replies: 10

Last updated: 31 March 2020
Karthikeyan on 29 March 2020

Category: Uncategorised

Replies: 2

Last updated: 29 March 2020

Mutation doubts to scuba, kirk
by Karthikeyan (Mar 29)

Thank you for your reply.i wrongly created two treads on same topic. Also there is no option to delete.

by scuba (Mar 29)

Some may be interested in what the Sanger method is for DNA sequencing - see video for a simple explanation:
https://www.youtube.com/watch?v=FvHRio1yyhQ
Regarding your situation - I am assuming your

by Karthikeyan (Mar 29)

Hi scuba,

Two years ago i changed to nilotinib from imatanib without taking mutation test. After taking nilotinib my pcr is always between 4 to 4. 5.

My question is, just assume i have
Category: Uncategorised

Replies: 2

Last updated: 29 March 2020
sandy craine on 27 March 2020

Category: Uncategorised

Replies: 6

Last updated: 29 March 2020

UK CML patients - COVID-19 - Advice from NHS/GP
by sandy craine (Mar 29)

Hi Peter,
If you know your are in MMR then no need for you to get into the details of that if you don't want to. It's a good place to be.
Sandy

by Dustylloyd (Mar 28)

Hi Sandy, today on the the subject of Covid-19 a professor came out with the line “ don’t listen to the noise, listen to the experts” and I’ve lived with that, in thought for

by sandy craine (Mar 28)

Hi Peter,
What is your current PCR % ratio- sorry if you have posted this before. Where are you being treated?
Have you to asked your clinic/pharmacy if you could have your TKI supply delivered to

by Dustylloyd (Mar 27)

Hi Sandy, My only concern is, I presume it’s the same for everyone in the Uk with Cml, my appointments are every 12 weeks, and we used to get confirmation twice before the actual appointment,
Category: Uncategorised

Replies: 6

Last updated: 29 March 2020
Karthikeyan on 28 March 2020

Category: Uncategorised

Replies: 5

Last updated: 29 March 2020

To scuba and other veterans about mutations
by Karthikeyan (Mar 29)

Hi scuba,

Two years ago i changed to nilotinib from imatanib without taking mutation test. After taking nilotinib my pcr is always between 4 to 4. 5.

My question is, just assume i have

by Karthikeyan (Mar 28)

A big thanks to scuba sir

by scuba (Mar 28)

Does the mutation test always find the correct mutation?.

Mutation testing in CML looks to find if a mutation is present in the kinase domain where bcr-abl is active. There are many bcr-abl

by Karthikeyan (Mar 28)

Thanks nimbus for your reply. May i get scuba and sandy ma'am's information regarding mutation questions.
Category: Uncategorised

Replies: 5

Last updated: 29 March 2020
Jason Graves on 27 March 2020

Category: Uncategorised

Replies: 1

Last updated: 28 March 2020

Bmt/ no go.
by alexmcpee (Mar 28)

So sorry to hear this news Jason. I’ve seen many of your posts and although this must be a terrifying time especially with what is happening worldwide I can only wish nothing but hope and

by Jason Graves (Mar 27)

We had a bmt donor set up ready to go got the news today that something went wrong on their end and it won’t work. I’m just at a loss. This cml has not gone are way in any way.
Category: Uncategorised

Replies: 1

Last updated: 28 March 2020
Arlene on 8 March 2020

Category: Side effects

Replies: 8

Last updated: 28 March 2020

Anyone with CML get pregnant?
by KeriF (Mar 28)

My PCR is good. After 1 year of treatment on 100mg dasatinib my last was 0.0024% so I then was decreased to 70mg. I had nearly zero side effects on 100mg except for ultra thin hair.

by Fillette (Mar 18)

Hi Keri,
I was diagnosed 2 years ago at 27 years. I used to feel that my chance of having a child was over but I recently read that if you maintain a deep Molecular Response for 5 years, the chance

by David Fitz (Mar 15)

Hi Keri,
At 30 your window isn’t closing than fast! And CML fertility has moved on quite a lot since that paper.
For you, the most important thing is your PCR ... how are you doing now?
Davd.

by KeriF (Mar 15)

Hi Arlene, I was diagnosed a year ago when I was 29, about three weeks before my wedding (and 4 days after finishing graduate school-horrible timing!)
I am one of the only women of childbearing age
Category: Side effects

Replies: 8

Last updated: 28 March 2020