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Felix on 18 December 2021

Category: Blood tests

Replies: 13

Last updated: 21 December 2021

PCR TEST FROM NHS
by Ismo (Dec 21)

I have also received email and PCR test but unless I have misread it the Blood Cancer UK info on anitvirals etc suggests that CML patients are not yet eligible for those treatments (I forget names)

by Christine R (Dec 21)

Hi Alistair .
Blood Cancer UK say it cover Sotrovimab, molnupiravir and Ronapreve. I understand they are antivirals and mono clonal antibodies. Sorry if any of that is spelt wrong.

by HelenS (Dec 20)

I received my email today. The email concentrates mainly on the procedure to follow regards the PCR test and what will happen after a positive test. But there is a link in there that takes you to

by David Fitz (Dec 20)

Alastair,
The email is vague. Not purposefully because 99%+ of people won’t know / care about the name of the medication, but just talks about “new treatments”.
The NHS is using
Category: Blood tests

Replies: 13

Last updated: 21 December 2021
Buzzm1 on 19 December 2021

Category: Uncategorised

Replies: 5

Last updated: 21 December 2021

Rising number of blood cancer patients dying of Covid in England and Wales
by scuba (Dec 21)

This is a key statement you made:
"My family had COVID last year and honestly my wife and son's symptoms were worse than mine."
Anyone who has gone through CML - especially those who

by ColoradoGuy (Dec 20)

Scuba - Thanks for the clarification. I too thought that was a broad umbrella when I read the headline of the article. I will be getting my second of two shots next month but don't

by scuba (Dec 20)

It very much depends on the type of blood cancer. Blood cancer is a broad label and CML is not in the risk profile in comparison to B-cell lymphocytic cancer:
https://www.cancer.gov/news-events/

by Dustylloyd (Dec 20)

I mentioned this comment to my doctor this morning, I was under the impression we (Cmls) were as safe as anyone else after having are booster jabs, but are problem is the recovery side of covid, he
Category: Uncategorised

Replies: 5

Last updated: 21 December 2021
brandonromeril99 on 18 December 2021

Category: Uncategorised

Replies: 0

Last updated: 18 December 2021

Neutrophil level?
by brandonromeril99 (Dec 18)

Recently started taking imatinib (about 4 weeks ago), I had ALL in 2017, been in remission since. But my BCR level rose up back in and been put on imatinib. My worst fear is becoming neutropenic
Category: Uncategorised

Replies: 0

Last updated: 18 December 2021
mariatot on 2 December 2021

Category: Drug-drug interactions

Replies: 5

Last updated: 17 December 2021

Nilotinib plus Peginterferon Alfa 2a and use of Milk Thistle and Globe Artichoke
by mariatot (Dec 17)

Thanks Sandy,
Have suggested a dose interruption until her fluid is under control and then dose reduction now that she's MMR, which has been oked by the hematologist. So will wait and see.
Maria

by sandy craine (Dec 7)

Hi Maria,
All TKIs have side effects (grades 1 - 4) and it seems that it depends on the individual whether they are manageable or not. Some fortunate people do not have significant side effects at

by mariatot (Dec 3)

Hi Sandy,
Forgot to tell you that when my mum was initially started on Imatinib, she had previously been prescribed hydrea (chemo drug) 1 x 500 mg in 2018 whilst the hematologist ran other tests, as

by mariatot (Dec 3)

Hi Sandy,
Thanks for our response and valuable feed back.
Long story.....She initially started on Imatinib - max dose and it drastically depleted her platelets and white blood cells causing her
Category: Drug-drug interactions

Replies: 5

Last updated: 17 December 2021
David Fitz on 17 December 2021

Category: Uncategorised

Replies: 0

Last updated: 14 January 2022

Hammersmith 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
sandy craine on 16 December 2021

Category: Other conditions

Replies: 0

Last updated: 16 December 2021

Do lateral flow tests detect omicron?
by sandy craine (Dec 16)

Detecting the Omicron mutation. Your questions answered.
Category: Other conditions

Replies: 0

Last updated: 16 December 2021
nilotinib on 15 December 2021

Category: Treating CML

Replies: 0

Last updated: 15 December 2021

Imatinib Fenofibrate
by nilotinib (Dec 15)

I have been prescribed Fenofibrate for my cholesterol.I am taking Imatinib 400mg amlodipine 10mg and 10mg Ezeterol.
From what I have read Fenofibrate should not be taken when drinking alchohol.
My
Category: Treating CML

Replies: 0

Last updated: 15 December 2021
sandy craine on 2 December 2021

Category: Other conditions

Replies: 2

Last updated: 15 December 2021

COVID Antibody Treatment Sotrovimab Approved for Use
by sandy craine (Dec 15)

Apparently not yet...according to MHRA "in due course"
'Dr June Raine, MHRA chief executive said that sotrovimab was "yet another therapeutic that has been shown to be effective

by Tricky109 (Dec 11)

Hi
Can I ask.please would we be able to take this if needed?

by sandy craine (Dec 2)

UK authorisation has been given for sotrovimab for patients with mild to moderate COVID-19 who are at risk of developing severe disease.
The Medicines and Healthcare products Regulatory Agency (MHRA
Category: Other conditions

Replies: 2

Last updated: 15 December 2021
Basil from RSA on 25 August 2019

Category: Uncategorised

Replies: 11

Last updated: 13 December 2021

Treatment Free Remission
by Basil from RSA (Dec 13)

Hi Vikram,
We have 578 members to date.
Not all are CML patients in TFR as we also accommodate a few top Medical Professionals as well as CML Group Admins.
The Admins pass on qualifying

by Vikram (Dec 13)

Hi basil
Your group 370+ member.. In TFR (IN 2019)
THIS TIME, (2021) HOW MANY MEMBER IN TFR...?
HOW MANY MEMBER IN TFR 3 plus year BCR-ABL RESULT UNDETACTABLE AND CONTINUE...
PLEASE REPLY....

by Vikram (Dec 13)

.

by Basil from RSA (Sep 6)

Hi Vancouvergirl,
That you for your reply and the questions you railed. I will attempt brief answers to the questions raised;
Question1: The process to get into a position to attempt TFR
Category: Uncategorised

Replies: 11

Last updated: 13 December 2021
Basil from RSA on 16 May 2020

Category: About CML

Replies: 8

Last updated: 13 December 2021

News from Basil in South Africa
by Vikram (Dec 13)

Hi, basil
Your group 370 plus member in TFR) IN 2019)
HOW MANY MEMBER IN TFR YOUR GROUP THIS TIME (2021)
HOW MANY MEMBER SUCCESSFULLY, TFR (UNDETACTABLE) 3 PLUS YEAR AND CONTINUE....?
Sorry for

by alexmcpee (Jun 2)

Hi there,
Sorry I just saw your message. Yes I did and unfortunately still not MMR at 24 months very close @ 0.164% blip up from 0.118% recorded 6 months ago. My oncologist views this as the “

by Karthikeyan (May 21)

Hello alex,

Did you get your pcr results which you said you would get it on 21st may.

by Karthikeyan (May 21)

Hello alex,

Did you get your pcr results which you said you would get it on 21st may.
Category: About CML

Replies: 8

Last updated: 13 December 2021
David Fitz on 28 October 2013

Category: Uncategorised

Replies: 21

Last updated: 13 December 2021

When does a blip become a trend?
by MartinZA (Dec 13)

Hi Timo
Thanks for the update - I know it's not ideal but I agree with you that it's good news, especially given the challenges you had early on. Onwards and downwards! Sending luck and

by sandy craine (Dec 10)

Good news Timo, thanks for updating as I am sure your example will reassure others (all of us) especially the newly diagnosed.
Sandy

by TimoD (Dec 10)

Updating this thread for future references to all others who are concerned about upticks.
Recent PCR analysis came back at 0,7%. This now marks my 12th month of treatment and 9th month of Tasigna.

by TimoD (Nov 15)

Hi Sandy
Yes, I have understood the same that sample quality is crucial. Unfortunately detailed data on my analysis is not available to me, although the operating procedure at the lab stipulates
Category: Uncategorised

Replies: 21

Last updated: 13 December 2021
jb on 10 December 2021

Category: Side effects

Replies: 3

Last updated: 13 December 2021

Sprycel and colitis
by Polineczka (Dec 13)

Hi, I've been taking a tasgine for 6 months and I also have a colon burn. My doctor didn't stop taking my medications, I got medications from a proctologist and it's better.

by jb (Dec 11)

Hi Scuba,
Thanks so much for the reply and the advice. You've had some really helpful stuff on this forum that I was able to lean on trying to learn all about this. I'll

by scuba (Dec 10)

On the bit of information you have provided, you are "exquisitely" sensitive to Sprycel is a very good way.
In your shoes, I would drop your dose to 20 mg. and test in 3 months. You may

by jb (Dec 10)

Hello all..
I have recently had to come off my Sprycel (100mg) due to significant colitis. My doctor said that whatever upset my stomach the sprycel made it worse contributing to colitis.
Category: Side effects

Replies: 3

Last updated: 13 December 2021
Dustylloyd on 7 December 2021

Category: Uncategorised

Replies: 4

Last updated: 9 December 2021

Appointments
by Dustylloyd (Dec 9)

Hello Denise,
I truly believe my doctor doesn’t know the chaos what is going on from the moment are telephone consultation end’s, and I would never blame any individual, I just believe

by Felix (Dec 9)

Hi, this must be just your doctor .My Doc sends my appointment for phone consultation every 3 months first Wednesday of the month complete with my form for blood test to have a few days before my

by Dustylloyd (Dec 8)

Hi Christine
i must emphasise I’m not blaming any individual, but from once knowing your appointment within days of the last one you had, now it seems the appointment department who organise

by Christine R (Dec 7)

Hi. This is the right place to moan and i understand your frustration and the stress involved. In my case it is the hospital dispensing the Nilotinib that i get stressed about. I did get
Category: Uncategorised

Replies: 4

Last updated: 9 December 2021
steven7 on 7 December 2021

Category: Uncategorised

Replies: 0

Last updated: 7 December 2021

Third dose of COVID vaccine
by steven7 (Dec 7)

Hi all,
Just took my third dose of Pfizer shot last week. It's been quite rough, compare to the first two. The next day I felt chill and fever, and symptoms like Myocarditis. Pounding hearts and
Category: Uncategorised

Replies: 0

Last updated: 7 December 2021
logisnews on 19 January 2019

Category: Side effects

Replies: 38

Last updated: 7 December 2021

Chylous Ascites as a TKI side-effect? Specifically Sprycel?
by logisnews (Dec 7)

It started about 4 years into my CML (and 4 years of Sprycel).
I stopped the Sprycel and the ascites stopped but within 3 months of stopping the TKI my CML numbers got a lot worse so we (me and my

by Michelle3 (Nov 29)

That’s incredible. Prior to taking the anti virals I was needing a drain every 2 weeks where they would remove c.7L (I was always left with about 3L as it just wouldn’t come out) but I

by logisnews (Nov 29)

Yes, immediately prior to the procedure they took it all out or as much as possible. I have not had one since -- i got an ultrasound a month later and none was needed. I may have some

by Michelle3 (Nov 29)

Thanks Jim - were you drained before the 4th procedure? When I started to take the anti virals I probably had about 7L and I’d say I’ve still got roughly 3L but it just doesn’t
Category: Side effects

Replies: 38

Last updated: 7 December 2021
marsy on 3 March 2013

Category: Uncategorised

Replies: 11

Last updated: 7 December 2021

Applying for Permanent Residency in Australia
by sandy craine (Dec 7)

Sorry, I have no further information on this subject so as advised in the post above you might find some help and advice by contacting the following organisation- This thread is quite a few years

by Paw Paw (Dec 7)

Hi,
I have the same question as yours. If you have any update kindly reply.
Thanks.

by sandy craine (May 23)

Hi,

I have tried to do a little research on this issue and came across the following article which may be of some help as it seems there is a way you might not be rejected outright. But I

by supersonic (May 21)

Hi,
I applying for Australia PR at the final stages and am in a dilemma as my partner has CML which is undetectable and if we disclose it during the medial check then can they approve the PR or is
Category: Uncategorised

Replies: 11

Last updated: 7 December 2021
Alan Locke on 4 December 2021

Category: Uncategorised

Replies: 3

Last updated: 7 December 2021

To eat or not to eat?
by sandy craine (Dec 7)

Hi Alan,
I have not read anything that contra-indicates piccalilli/onions/chutneys.... so enjoy them. Re gut health, I agree that more and more research indicates that we should all be aware that

by Felix (Dec 6)

Hi Alan ,as far as I am aware the only things to avoid are ,Seville oranges, Blood oranges ,Grapefruit ,Pomegranate and Liquorice .I am sure one of the experts will get back to you if there is

by PhilipDavid (Dec 6)

Hi. I have been on imatinib for 6 years now. My PCR is. 0.007. The most important thing is to take the medication with food - mainly carbohydrates- rice , bread , potatoes - stops

by Alan Locke (Dec 4)

Hi everyone
I have a brother-in-law who is a keen pickler! He has given us for Christmas 5 jars of piccalilli, onions and various chutneys.
Can I eat them in moderation or not at all?
I
Category: Uncategorised

Replies: 3

Last updated: 7 December 2021
Ontasigna on 3 December 2021

Category: Treating CML

Replies: 1

Last updated: 6 December 2021

Tasigna : dosage gap 11.30 hrs
by ColoradoGuy (Dec 6)

I very much doubt that feeling tired has anything to do with when you are taking your dose (especially half an hour from recommended time). I try as much as possible to take them 12 hours

by Ontasigna (Dec 3)

Hi all,
I have taken my tasigna dose at a time gap of 11.30 hrs as supposed to 12 hrs gap.
I am feeling very tired and joint and muscle pain.
Is it bcoz of dose??
I am on 400mg bd
Kindly share your
Category: Treating CML

Replies: 1

Last updated: 6 December 2021
rebeccacrosby on 4 December 2021

Category: Treating CML

Replies: 2

Last updated: 6 December 2021

New Diagnosis/tasigna ?
by rebeccacrosby (Dec 6)

Hi John,
Thank you for your response. The pain from the enlarged spleen did last awhile but was gone after a week on Tasigna. This pain feels like it is something different from the spleen, but it

by johnw1001 (Dec 5)

Hi,
With a very high WBC it would not be unusual for your spleen to be enlarged and for the spleen to impose on to the stomach and create pain and discomfort as well as indigestion-I understand that

by rebeccacrosby (Dec 4)

Hello all,
I was just diagnosed on Oct 30th, had a WBC 425,000 and very enlarged spleen. I am a 45 year old female with a fairly healthy lifestyle. I started Tasigna on Nov 16th and developed both a
Category: Treating CML

Replies: 2

Last updated: 6 December 2021
JPD on 23 November 2021

Category: Uncategorised

Replies: 2

Last updated: 5 December 2021

First undetected after 8 years AND dose reduction...
by kat73 (Dec 5)

May be a blip, but it also could be the beginning of a trend. Anecdotally, many people experience a major downward improvement in their PCR after a drug break and return, especially at a lower

by scuba (Nov 24)

I like turtles.

by JPD (Nov 23)

I know its 99% a blip, but it was a pleasant surprise. First test post dose reduction (Tasigna 400mg to 300mg). Only thing Ive been doing different is trying to get on the SCUBA Vitamin D
Category: Uncategorised

Replies: 2

Last updated: 5 December 2021