Recommendation from the NCRI CML Subgroup- updated 27th March 2020

Public Health England - COVID-19 Guidance Document

CML and COVID-19 case collection by iCMLf

Guidance from iCMLf regarding COVID-19

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sandy craine on 20 March 2020

Category: About CML

Replies: 26

Last updated: 31 March 2020

PinnedCOVID-19 - NCRI Recommendations for CML patients receiving TKI therapy
by Olivia (Mar 31)

I live in Scotland too, and this morning I had a phone call from my GP surgery asking if I was OK, and if I needed anything. They said I was definitely in the vulnerable category. I have

by Kenny (Mar 31)

No one in Scotland, where I live appears to have received them yet.
I called my GP and was advised letters were posted this morning, I would think, you should get it it by monday.

by Eck (Mar 30)

As well as having CML I have had asthma since I was very young and also suffer from emphysema I think there is little doubt I am in a high risk group but have not received a text or letter from NHS

by Lydia (Mar 28)

Many thanks for your reply. Sandy, 'it is clear that PHEngland did not agree with the CML sub-group's that CML would better included in a moderate risk group' is the missing part in my
Category: About CML

Replies: 26

Last updated: 31 March 2020
Justine on 31 March 2020

Category: Blood tests

Replies: 1

Last updated: 31 March 2020

Article on CML lab testing
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: 1

Last updated: 31 March 2020
ipmaki on 29 April 2019

Category: Treating CML

Replies: 58

Last updated: 31 March 2020

Sprycel - Lack of Response
by ColoradoGuy (Mar 31)

My results are in....0.16% up from 0.12% so really not much of a change (although a 0.04 swing in the other direction would have had me jumping up and down). I was REALLY hoping that I would

by ColoradoGuy (Mar 25)

I agree that is not much of an uptick. It's possible to see a couple of results around there before a drop. Regarding the 2020 Guidelines that is how I understood them as well and it

by scuba (Mar 25)

Below 1% is the target goal for maximum 'progression free survival' (over 95%). At this level, progression free survival rates are indistinguishable between patients who are undetected

by ipmaki (Mar 25)

Last note, Coronavirus related, I got my blood draw with limited issue last week (people in the waiting room keeping their 6-foot distance and a lot of masks). My oncologist decided a phone call was
Category: Treating CML

Replies: 58

Last updated: 31 March 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: 6

Last updated: 31 March 2020

Are cml survivors eligible for Government jobs
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

by Vikram (Mar 29)

I applied government job exam
Category: Uncategorised

Replies: 6

Last updated: 31 March 2020
snowman 35 on 30 March 2020

Category: Drug-food interactions

Replies: 0

Last updated: 30 March 2020

Is stevia(sweetener) OK with sprycel?
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: 0

Last updated: 30 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 Iyadede (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
Ontasigna on 27 March 2020

Category: Side effects

Replies: 4

Last updated: 28 March 2020

Is it Covid-19?? TKI side effects
by Ontasigna (Mar 28)

Okay. Thank you. I have read somewhere that covid-19 induces leukopenia. Is that true?
Here are my differential counts. Are they fine?
Neutrophils 2.76 thou/mm3

Lymphocytes 2.50 thou/mm3

by sandy craine (Mar 28)

You should probably contact your doctor for general advice.

by Ontasigna (Mar 28)

I managed to get my blood tested. My TLC is 6300 and platelet is at 152k.
My cough and cold symtoms are since 25 days.
My last blood test had TLC - 9400 and platelet 230k. Which was 20 days back.

by sandy craine (Mar 27)

If you have not had these symptoms before, they are probably not due to side effects of TKI therapy... especially as you have a cold/mild cough etc. do you have a high temp? How long have you felt
Category: Side effects

Replies: 4

Last updated: 28 March 2020
Jason Graves on 28 March 2020

Category: About CML

Replies: 1

Last updated: 28 March 2020

Thoughts on bmt.
by sandy craine (Mar 28)

Yes, I know about my own SCT which I had in 2003.
Sandy

by Jason Graves (Mar 28)

Does anyone here know much about bmt?
Category: About CML

Replies: 1

Last updated: 28 March 2020
Karin on 27 March 2020

Category: Uncategorised

Replies: 2

Last updated: 28 March 2020

Sore glands under jaw
by johnw1001 (Mar 28)

In the early years of treatment with imatinib I had quite a painful swollen node on the right side of the neck and my haematologist examined it and declared it not to be suspicious but said that it

by sandy craine (Mar 27)

If this is one of your lymph glands that is swollen and tender, usually you can feel them on the sides of your neck, then it may be a sign that you have an infection - apart from tenderness do

by Karin (Mar 27)

At first I thought it was a stiff neck, now I realize that the gland under my jaw is very tender. Still have stiff neck on the same side of my body. Should I be concerned?
Should have mentioned that
Category: Uncategorised

Replies: 2

Last updated: 28 March 2020
Karthikeyan on 27 March 2020

Category: Uncategorised

Replies: 2

Last updated: 28 March 2020

To scuba and others
by Karthikeyan (Mar 28)

Thank you for your reply scuba

by scuba (Mar 27)

https://www.cancer.org/cancer/chronic-myeloid-leukemia/treating/is-treat...
CCyR = complete cytogenetic remission.
It means under the microscope, no cells are observed with the Philadelphia

by Karthikeyan (Mar 27)

Hi scuba and others.

What is ccyr. Why it is important.
Category: Uncategorised

Replies: 2

Last updated: 28 March 2020
JacqJohn on 28 December 2019

Category: Side effects

Replies: 3

Last updated: 28 March 2020

Imatinib Side Effects - Brittle/Cracked Finger Nails
by Sd (Mar 28)

I also have this problem. Right now it is just on my thumbs. I am using Bert's Bees cuticle cream, and a coat of clear nail polish. These are not cures but they seem to be helping somewhat.

by johnw1001 (Feb 9)

It might be useful to seek some tests of
Vitamin D,Vitamin B12
Folates and Ferrin (Iron)
Long term use of tki s can modify some of the red cell dimensions and then of course there is diet so my

by RC Kirk (Dec 28)

I also have that happen a little bit, mostly on my big toes. Not aware of any supplements that might help. Sorry

by JacqJohn (Dec 28)

Hi All,
Ive been on Imatinib for ~2.5yrs. Of lately I’m starting to observe that I’m starting to develop dry / brittle / cracked nails. Started on my index finger, and now my third and
Category: Side effects

Replies: 3

Last updated: 28 March 2020
Karthikeyan on 27 March 2020

Category: Uncategorised

Replies: 3

Last updated: 27 March 2020

Question to scuba and others
by Karthikeyan (Mar 27)

Thank you sandy and scuba. I understood clearly from sandy ma'am's explanation.

by sandy craine (Mar 27)

No you do not need a separate blood test.
Blast Cells –
Blast cells are immature cells, such as myeoblasts and lymphoblasts, that go on to develop into mature white blood cells. 1 to 5%

by scuba (Mar 27)

Blast cells (also termed myeloblasts) are part of the CBC report and should be listed. It is possible that when blast cells are zero, there is no entry. Blast cell count is often zero. Ask your

by Karthikeyan (Mar 27)

Hi,scuba and others.i don't find any mentioning of blast cell count both in pcr and cbc. So how do i know about my blast cells count. Does it need a separate blood test to blast cells count.
Category: Uncategorised

Replies: 3

Last updated: 27 March 2020
Dustylloyd on 25 March 2020

Category: Uncategorised

Replies: 3

Last updated: 26 March 2020

High risk, moderate risk.
by alexmcpee (Mar 26)

Hey Peter, not at all. These are anxiety inducing times. I am not always calm it takes a lot of work haha. Stay safe and stay busy.
All the best mate
Alex

by Dustylloyd (Mar 25)

Hi Alex, thanks for your spot on reply, your comments on Cml Support group are always interesting and I probably need a dose of your calmness. Hope I didn’t come over as a “hothead

by alexmcpee (Mar 25)

I agree Peter. I am sorry if my other post caused anxiety. As I said to friend this eve “it’s as much accepting that our treatment is that good over accepting that CML is that bad

by Dustylloyd (Mar 25)

Hi everyone, I’m just trying to work out if I’m on my own in the belief that we may all have Cml in title, but, some of us will have good reactions,and some will have hiccups to
Category: Uncategorised

Replies: 3

Last updated: 26 March 2020
scuba on 25 March 2020

Category: Uncategorised

Replies: 4

Last updated: 25 March 2020

Coronavirus perspective
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

by johnw1001 (Mar 25)

Hi Scuba,
I am interested in your analysis.
Historically what is interesting is the 1918-19 flu pandemic the so called Spanish flu which is reputed to have originated in wild water fowl in Kansas
Category: Uncategorised

Replies: 4

Last updated: 25 March 2020
shelly on 19 March 2020

Category: Side effects

Replies: 6

Last updated: 25 March 2020

Can anyone help please stuck on Cruise Ship in Hawaii
by Felix (Mar 25)

Hi, been thinking about you ,how are you doing ,any developments.

by sandy craine (Mar 20)

That seems like a very high dose of dasatinib. Can you communicate with your husbands clinician by email?
Sandy

by Felix (Mar 20)

Hi Shelley ,most of us take 50 mg even 20 mg ,less is more ,but I don't know your husbands situation .It will be better I think to take a lower dose everyday than run out and not take any

by shelly (Mar 20)

Thanks Denise yep. We are in discussions re reduction.

We have another 60 days in Australia but can't seem to get it here. Even with commercial flights leaving from Sydney everyday till 22nd.
Category: Side effects

Replies: 6

Last updated: 25 March 2020