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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
sandy craine on 24 February 2021

Category: About CML

Replies: 5

Last updated: 26 November 2021

Original imatinib/Glivec packaging?
by Julia.K (Nov 26)

Hi, could anyone tell me pls if the branded Glivec is still available in the UK in special cases? If generic Imatinib does not work and you cannot take any second line TKIs (and asciminib as well)

by sandy craine (Mar 4)

Thanks John,
I have all those links and have forwarded them to the curator of the exhibition. Of course this will be about cancer rather than stand alone CML. That may happen at some future date,

by johnw1001 (Mar 3)

Hi Sandy,
We have been in contact.
I still have packaging for Glivec from 2007 when first dx plus a lot of other historical things like records of bloods on that dreadful day when given the bad news

by sandy craine (Mar 2)

Hi Buzz,
Thanks so much for trying that. I have contacted a couple of clinicians here in the UK as well as Brian Druker so I am hoping that will be fruitful. I am now regretting that I did not save
Category: About CML

Replies: 5

Last updated: 26 November 2021
Alan Locke on 23 November 2021

Category: Uncategorised

Replies: 5

Last updated: 25 November 2021

Saying hello
by sandy craine (Nov 25)

Interesting Youtube vid from Dr.John Cambell here re data from 3rd vaccine/booster.

by Richard42 (Nov 25)

As for paracetamol, I can’t see any harm in taking it. There are views pro and con as far as both paracetamol (metabolised in the liver, like imatinib certainly) and ibuprofen (a bit harsh on

by Richard42 (Nov 25)

I’ve had my booster and it was fine. All my doses were Pfizer and the only side effect I had was a sore arm.
Given your recent diagnosis I would definitely discuss it with your

by Alan Locke (Nov 24)

Thank you Sandy.
Hopefully, my second hospital appointment is just before my booster. I will ask about D3 levels.
I am finding the support site very helpful in understanding Cml. As a humble
Category: Uncategorised

Replies: 5

Last updated: 25 November 2021
Karthikeyan on 18 November 2021

Category: Uncategorised

Replies: 6

Last updated: 20 November 2021

About vitamin d
by scuba (Nov 20)

I take 500 mg vitamin C (sometimes twice a day)
I take 200 mcg selenium EVERY DAY, except when eating brazil nuts
I take 15-30 mg zinc every day.
Yes, I do think taking these strengthens the immune

by Karthikeyan (Nov 20)

Thanks scuba for answering.vitamin c,zinc, selenium have roles in immunity.do you think i should take these with vitamin d to further strengthen immune system.

by scuba (Nov 19)

"Even though I have better vitamin d than my wife. What could be the reason that she did not catch flu and I caught flu."
She's lucky!
(most likely she has residual immunity from a

by Vikram (Nov 19)

Hello karthikeyan
Immune system
Giloy juice

Wheatgrass juice
Immune system boost...
My experience.....
Category: Uncategorised

Replies: 6

Last updated: 20 November 2021
Batman0424 on 16 November 2021

Category: Blood tests

Replies: 5

Last updated: 19 November 2021

BCR Elevated from .09 to .18 after treatment stop
by scuba (Nov 19)

The fact that 70 mg has been rough is all more the reason her dose should be lowered. She is very sensitive to Sprycel and lower dose is best if lower dose works. The lower the better in fact.

by Batman0424 (Nov 19)

Thank you all for the feedback, this is very helpful and reassuring. My wife would prefer to be on a lower dose, hopefully that can happen soon. 70mg has been rough.

by kat73 (Nov 19)

I would also like to add that the difference in her test results is so miniscule - statistically insignificant - not worrisome at all. I have experienced what Scuba described - after a short

by scuba (Nov 18)

I had a very similar issue involving neutrophil suppression at 70 mg sprycel (dasatinib). I was taken off treatment until my counts recovered. Then restarted, then had to stop to allow counts to
Category: Blood tests

Replies: 5

Last updated: 19 November 2021
vonnie on 17 November 2021

Category: Uncategorised

Replies: 1

Last updated: 17 November 2021

WCB
by AlastairC (Nov 17)

Hi Vonnie
This subject was discussed on an old thread - link here.
Hope that's useful
Alastair

by vonnie (Nov 17)

Hi i have just had my 3 monthly consultation with my CML specialist and she has told me my white cell count has dropped to 1.5.I was told the lowest acceptable reading is 1.7 therefore it is planned
Category: Uncategorised

Replies: 1

Last updated: 17 November 2021
sandy craine on 12 November 2021

Category: Food & fitness

Replies: 3

Last updated: 16 November 2021

Why is Zinc Important?
by sandy craine (Nov 16)

I had never eaten oysters until a few years ago. I always thought they looked too slimy and unappetising, but how wrong I was!!! A friend who ran a Deli persuaded me to join an oyster and champagne

by scuba (Nov 16)

https://www.everydayhealth.com/pictures/best-food-sources-zinc/

In cold waters, oysters are a fantastic source for zinc.

by johnw1001 (Nov 16)

Hi Sandy,
What you have posted is backed up by other sources.I have just had a look again in the book by oncologist Professor Robert Thomas "How to Live" and he says "Zinc is an

by sandy craine (Nov 12)

Zinc - an essential mineral: signs and symptoms of deficiency
Category: Food & fitness

Replies: 3

Last updated: 16 November 2021
TimoD on 15 November 2021

Category: Treating CML

Replies: 2

Last updated: 16 November 2021

FDA approves asciminib (commercially Scemblix) in the US
by sandy craine (Nov 16)

The CML Support Group is one of the patient organisations involved in the upcoming NICE TA (technology appraisal) for asciminib for the NHS use as 3rd line therapy in CML.
Asciminib for treating

by johnw1001 (Nov 16)

Hi Timo,
Just to add a few points.FDA seemed to have given this tki fairly rapid approval -it granted so called breakthrough therapy designation in February 2020 and with a final submission made to

by TimoD (Nov 15)

https://www.novartis.com/news/media-releases/fda-approves-novartis-scemb...

Hi there
I did not find any news on this on this forum but there is a new kid on the block. It has a name -
Category: Treating CML

Replies: 2

Last updated: 16 November 2021
David Fitz on 28 July 2020

Category: Uncategorised

Replies: 4

Last updated: 16 November 2021

Help CML Support when you shop at Amazon
by Nimbus2 (Nov 16)

Hopefully, the commission from my purchases has been flowing through for some time. Perhaps, you could re-pin this thread.

by minwalles (Nov 15)

This is a great idea! I have always said that it is necessary to save money on purchases of any kind . I have been using it for a long time DontPayFull.com to search for promo codes for discounts

by David Fitz (Jul 31)

Thanks John! It all makes a difference.
I don't think Amazon Fresh (or Prime Now) counts - just the standard Amazon catalogue, but that's still a lot!
David.

by johnw1001 (Jul 31)

David,
As an avid user of Amazon I have subscribed to this scheme for some time;my latest total contribution to CML is nearly up to £30.The amount of support is quite small but if we
Category: Uncategorised

Replies: 4

Last updated: 16 November 2021
EvaH on 2 November 2021

Category: About CML

Replies: 3

Last updated: 16 November 2021

Leukemia / TKI use and disorders of the corpus callosum - anyone got experience?
by EvaH (Nov 16)

Update: tests and imaging still ongoing but medications that supress our immune system can give JC virus a chance to proliferate and cause something called PML - Progressive multifocal

by EvaH (Nov 6)

Thanks Buzz.
There's more imaging to be done to be sure, as there's also a harmless (congenital) lipoma in the picture, so to speak.
I do seem to be a magnet for the rare medical things.

by Buzzm1 (Nov 5)

EvaH, if you think it would help you could immediately lower your current Imatinib 200mg dosage to 100mg when you receive undetected on your upcoming Nov. 22nd BCR-ABL test, rather than waiting

by EvaH (Nov 2)

Hi all,
I have a lesion on my corpus callosum and the neurologist said it might have something to do with my CML meds (imatanib)
Anyone got experience with brain issues after CML?

thanks
Eva
Category: About CML

Replies: 3

Last updated: 16 November 2021
Costas on 25 November 2020

Category: Side effects

Replies: 9

Last updated: 15 November 2021

Hormonal or chemical imbalance?
by Costas (Nov 15)

Hi Sandy,
He did check me for B12 deficiency but that didn’t show in my blood test. I take injections of the vitamin anyway since I do feel it has a positive effect on me and has made a

by sandy craine (Nov 15)

Costas,
It's good to hear that you have not experienced any of the (caffeine induced) episodes. Did your clinician test you for B12 deficiency?
I am puzzled by the fact that you are taking 2 x

by Costas (Nov 15)

After about a year I am returning to this for an update. Since I have been taking B12 and folic acid, I haven’t had any more episodes as the ones I previously described. Initially I took B12

by Costas (Nov 28)

Hi Annie,
Thank you for taking the time to respond. I thought that reaching out to other CML patients might be the only way to make sense of what is happening to me. Your experience is kind of
Category: Side effects

Replies: 9

Last updated: 15 November 2021
Danmason11 on 13 November 2021

Category: Blood tests

Replies: 2

Last updated: 15 November 2021

First test after diagnosis - what am I looking for and what should I ask?
by Danmason11 (Nov 15)

That’s great. Thanks very much Alastair

by AlastairC (Nov 14)

Hi Dan,
At the top of this page there is a tab labelled "About CML". The first topic under that is "Just diagnosed". Click that link and you will get the distilled experience of

by Danmason11 (Nov 13)

Hi all
I was diagnosed in August and I have my first appointment with my consultant on Tuesday to go through my first blood test results. Just wondered if there were any suggestions or other threads
Category: Blood tests

Replies: 2

Last updated: 15 November 2021