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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
David Fitz on 21 March 2014

Category: Uncategorised

Replies: 18

Last updated: 3 December 2021

GORD / GERD / Reflux and Nissen Fundoplication
by Nimbus2 (Dec 3)

Hello David. I cannot thank you enough for this posting and the care you have taken with writing it.
My situation is very similar except that I am 65 years old. My dentist has noted substantial

by David Fitz (Dec 2)

For me the surgical intervention was self led. I am a big believer in patient-led care! It also helped that I had insurance which meant it was easy tog et to see a gastroenterologist.
The

by Nimbus2 (Nov 30)

It is an old thread but very helpful in that it is so close to my own circumstances. I take dasatinib 100 mg at present, I am just within MMR after three years.
My heartburn a couple of weak

by sandy craine (Mar 25)

Hi David, thanks for updating us on your great results with what seemed like at the time, quite an invasive procedure. It is great that you found an answer to what must have been quite distressing
Category: Uncategorised

Replies: 18

Last updated: 3 December 2021
sandy craine on 1 October 2021

Category: Other conditions

Replies: 8

Last updated: 1 December 2021

Over 200 Scientists & Doctors Call For Increased Vitamin D Use To Combat COVID-19
by scuba (Dec 1)

Ample Magnesium Is A Must For Healthy Vitamin D Levels

https://www.mindbodygreen.com/articles/ample-magnesium-is-must-for-healt...

One of the many hats magnesium wears throughout the body is that

by scuba (Nov 21)

Another outstanding video from Dr. John Campbell regarding vitamin D & Covid

https://www.youtube.com/watch?v=fbGug3rczx4

Dr. John Campbell
COVID-19 Mortality Risk Correlates Inversely with

by sandy craine (Nov 5)

How can you know that you are getting enough of both vitamins D and K? Here is a quick summary on the topic, along with additional information and details about vitamins D and K.
Vitamins D and K

by scuba (Oct 21)

Click on the link for an excellent summary on role of D3 and K2 in the body and how they work together. Both should be taken per day for maximum health benefit.
By adding K2 to your D3 protocol,
Category: Other conditions

Replies: 8

Last updated: 1 December 2021
alexmcpee on 23 November 2021

Category: Uncategorised

Replies: 10

Last updated: 30 November 2021

3.5 year PCR result
by Nimbus2 (Nov 30)

That's very interesting. I have a few weeks to wait until my next result. It is a lesson not to get too excited about one off measurement either way.

by ColoradoGuy (Nov 30)

Funny, I too had a 0.015% outlier in between 0.043% and 0.045% (my latest).

by Nimbus2 (Nov 30)

Well done! I have also been a slow responder with a bumpy ride towards MMR. I had a 0.015% which was an "outlier" (too good to be true) but my subsequent 0.064% is more representative of

by ColoradoGuy (Nov 29)

Congrats and thanks for sharing. As you know I am also at 0.045% and 51 months in. I have been MMR for about a year and a half and am still hopeful for steady movement downward. I
Category: Uncategorised

Replies: 10

Last updated: 30 November 2021
Deni H on 12 November 2021

Category: Side effects

Replies: 2

Last updated: 30 November 2021

Tiredness and Imatinib
by Rae_B (Nov 30)

Hi Deni
I was diagnosed on Dec last year too.
I think your experience mirrors mine. Some days I'm perfectly OK - I can crack on with my day. Then, I'll go through a few days

by AlastairC (Nov 14)

Hi Deni
I think in time this will reduce but not go away completely. I have been on imatinib at various levels since 2007. For the first 11 years I was on 400mg, and had what I described to my wife

by Deni H (Nov 12)

Good Afternoon all
I hope this finds you safe and as well as can be expected.
Just some advice please. I was diagnosed in December 2020 and at my last hospital appointment my wonderful consultant
Category: Side effects

Replies: 2

Last updated: 30 November 2021
sorin real on 26 November 2021

Category: Food & fitness

Replies: 4

Last updated: 17 March 2022

BCR-ABL1 and the workout
by sorin real (Nov 27)

Thank you all , good to hear that !

by snowman 35 (Nov 27)

Hi

I do crossfit from the first day of my diagnosis since 5.5 years.I lify heavy weights and I do workouts that my heart beat reaches 190+ beats per minute. I am unditected 4.5 years now!

by thomas.c (Nov 27)

Hi. I haven’t exactly notice a direct connection between exercise frequency and bcr-abl levels, however dasatinib gave me (or at least likely contributed to) rhabdomyolysis after some intense

by PhilipDavid (Nov 27)

Hi. I do quite a lot of exercise- gym 3 to 5 times a week. I am lifting some heavy weights - 135 kg dead lift . I was diagnosed some 6 years ago. My PCR is. 0.007. I found
Category: Food & fitness

Replies: 4

Last updated: 17 March 2022