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vonnie on 19 February 2021

Category: Uncategorised

Replies: 3

Last updated: 27 February 2021

folic acid
by chrissie (Feb 27)

You're welcome, Vonnie. Take care and keep safe,
Best
Chrissiex

by vonnie (Feb 25)

Hi Chrissie, I apologise for not replying to you personally until now. Thank you very much for your reassuring reply. I was diagnosed on June, 2017 and believe it or not still get anxious if my

by chrissie (Feb 20)

Hi Vonnie
My GP prescribes 5 mg of Folic Aid daily. Have been taking this for about 1 yr so far. My Folic Acid rates are still only 2.6 so obviously I need this supplement.
Best
Chrissie

by vonnie (Feb 19)

hi still wondering has any one on imatinib been advised to take folic acid because their folate level is a bit down
thanks
vonnie
Category: Uncategorised

Replies: 3

Last updated: 27 February 2021
sandy craine on 26 February 2021

Category: Clinical trials

Replies: 0

Last updated: 26 May 2021

COV-CML - UK retrospective data collection Covid infection in CML patients - volunteers needed.
by sandy craine (Feb 26)

COV-CML; A UK NATIONAL RETROSPECTIVE DATA COLLECTION FOR COVID-19 DISEASE /SARS-CoV-2 INFECTION IN CML PATIENTS
Imperial College collected data back in March/April 2020 to identify covid infection
Category: Clinical trials

Replies: 0

Last updated: 26 May 2021
sandy craine on 26 February 2021

Category: Clinical trials

Replies: 0

Last updated: 26 February 2021

CML-Co-vax- Study to evaluate Covid Vaccine in CML patients taking TKI therapy - Volunteers needed
by sandy craine (Feb 26)

SEROPROTECTION AGAINST SARS-CoV-2 IN CML PATIENTS RECEIVING TKI THERAPY
IRAS Project ID: 289527; REC reference: 21/SC/0016, Hammersmith Hospital, Imperial College NHS Trust, London UK
Study Summary
Category: Clinical trials

Replies: 0

Last updated: 26 February 2021
Karinne on 11 February 2021

Category: Uncategorised

Replies: 16

Last updated: 26 February 2021

NOT DETECTED
by Karinne (Feb 26)

Thanks to all for your kind words. It means a lot.
And I wanted to share an interesting fact about my CML. I stopped treatment after 4 years of Sprycel (2018) because of a pleural effusion and

by Gian P (Feb 25)

Congratulations! Happy for you!

by drarchanaj.adapt (Feb 18)

Great results. How much of vitamin D do you take every day please ??

by RodM (Feb 17)

Great result on undetectable when treatment free!
I stopped Datatinib 18 months ago after 8 years of treatment. PCR at discontinuation was varying between 0.003% and undetectable. My count slowly
Category: Uncategorised

Replies: 16

Last updated: 26 February 2021
Gian P on 25 February 2021

Category: Children & young people

Replies: 1

Last updated: 26 February 2021

BCR ABL READING
by alexmcpee (Feb 26)

I’ll give you an example I am 0.077% (mr3) my doc ignores everything after the 1st 7 so he would say you are 0.07 and to be honest I do when people ask. I think some people just like to be

by Gian P (Feb 25)

Hi everyone
sometimes i read other members BCR test results % different than mine,So i hope to get a straight answer here, so I understand:
my BCR results are 0.070 % the previous month 0.050
Category: Children & young people

Replies: 1

Last updated: 26 February 2021
mamodei on 21 February 2020

Category: Side effects

Replies: 5

Last updated: 25 February 2021

Trying Sprycel at 20mg
by mamodei (Feb 25)

My BCR-ABL was 0.0243 when I dropped to 20mg. I only took 25mg for a few days, splitting 50mg pills in half, until my 20mg pills arrived. My numbers went up a bit, but then began

by Gian P (Feb 25)

Maria thank you for sharing!
so, let me understand, your BCR is 0.0274, and you changed from 50 mmg to 25 mmg and now to 20 mmg?
I wish to try that too!
in prospective my BCR IS 0.070 and im taking

by mamodei (Feb 25)

A year follow up to this. My first PCR test after the dose reduction went up, but then it went down a bit, then a bit more, and now a year later I've gotten my best results to date.

by kat73 (Feb 21)

Happy you are happy, Maria! I know EXACTLY what you're talking about. I remember on Gleevec, reducing a couple of times to 300 and 200, the difference in mood (not really the right
Category: Side effects

Replies: 5

Last updated: 25 February 2021
SS86 on 25 February 2021

Category: Side effects

Replies: 5

Last updated: 25 February 2021

Swere Headache & Red eyes / Puffiness / One of the Doctor advising to change from Disatinib to Imatinib
by Felix (Feb 25)

Hi, sorry to hear your wife is suffering on 100 mg Dasatinib I am not surprised that Dose is too toxic.I refused to go on 100 mg and insisted on 50 mg ,research says less is more with

by SS86 (Feb 25)

Thank you John. Your words have cleared quite a bit of doubts and trust me this is what I find beautiful about this forum.
We are planning to revisit our this doctor tomorrow and ask if

by SS86 (Feb 25)

Hi David,
Thanks for your response.
One of the two doctors have recommended this change from Disatinib 100 mg to Imatinib 400 mg while other one has recommended to continue on Disatinib.

by johnw1001 (Feb 25)

Hi,
In respect of your side effects on Dasatinib and in particular the red eyes and puffiness unfortunately some patients on imatinib find that eye issues are quite common side effects as well;I
Category: Side effects

Replies: 5

Last updated: 25 February 2021
MLD on 25 February 2021

Category: Uncategorised

Replies: 4

Last updated: 25 February 2021

Asking to be removed from the Covid shielding list
by MLD (Feb 25)

Hi Alistair. Thank you for the advice. We are going to go back to his employer and find out what's changed, because he cannot work as effectively off site. We're also speaking to his

by MLD (Feb 25)

Hi Peter, my query wasn't about removing shielding for everyone and nor was I implying it wasn't worth it. This is about my partner's individual case based on his current prognosis.

by Dustylloyd (Feb 25)

Amazing, Covid 19 is a new virus, at the start, the uk government, and the scientists were walking on eggshells, protection was key, if they hadn’t introduced shielding instead of over 160000

by AlastairC (Feb 25)

I haven't tried to have myself removed from the list; I've not had the issue with an employer as effectively I'm self-employed.
My question would be why has the company changed it's
Category: Uncategorised

Replies: 4

Last updated: 25 February 2021
cmljax on 24 February 2021

Category: Uncategorised

Replies: 2

Last updated: 25 February 2021

Cough on Low Dose Sprycel
by cmljax (Feb 25)

John:
I began to experience Stage 1 peripheral neuropathy about 2 years into nilotinib therapy, but it was very intermittent and I didn't pay much attention to it. About 2 months ago, it

by johnw1001 (Feb 24)

Hi ,
I am interested in your point that your peripheral neuropathy associated with Nilotinib that has now become less troublesome since you have gone on to another tki Sprycel/Dasatinib.I have

by cmljax (Feb 24)

So after 2 years of begging my oncologist to let me try 20 mg/day of Sprycel, he finally relented and wrote the Rx. I have been on it for almost 2 weeks now and for the past 3 days, have had a
Category: Uncategorised

Replies: 2

Last updated: 25 February 2021
labros on 22 December 2020

Category: Side effects

Replies: 6

Last updated: 25 February 2021

Flu-like symptoms every 1.5-2months
by EvaH (Feb 25)

Your immune response can be slightly weakened on TKIs esp since you're relatively newly diagnosed.
Most adults have whole family of viruses dormant in their system from Epstein Barr to

by kat73 (Dec 27)

Wow, Alex, bullet dodged! Good work on all your family's parts. What a world we are living in. Here's to 2021!

by alexmcpee (Dec 24)

That’s really interesting John.
My wife had Covid a couple of weeks ago and my daughters and I isolated away from her. I used first defence nasal spray everyday twice a day as their is some

by johnw1001 (Dec 23)

Hi Labros,
I find your posting very interesting and topical.
I am coming up for 15 years on imatinib and still doing well.I have noticed that on occasions especially if I dont take the drug with a
Category: Side effects

Replies: 6

Last updated: 25 February 2021
Carolinemb on 21 March 2018

Category: Food & fitness

Replies: 11

Last updated: 24 February 2021

Imatinib & Fruit interaction
by mil (Feb 24)

Thank you Snowman for your answers.

by snowman 35 (Feb 18)

Hi!

I am absolutely sure that cranberies are OK! I am not sure about blackeberies... I

by mil (Feb 18)

Hi guys, any of you know if blackberry or berries en general can interact with TKIS?
Thank you in advance for your answers.

by David Fitz (Jul 22)

Indeed, don’t eat a whole one. But at the same time, don’t worry if there’s a little bit in your fruit salad.
David.
Category: Food & fitness

Replies: 11

Last updated: 24 February 2021
MartinZA on 22 February 2021

Category: Treating CML

Replies: 3

Last updated: 22 February 2021

In praise of Vitamin D
by scuba (Feb 22)

Martin - let us know your vitamin D level test results.

by MartinZA (Feb 22)

Hi scuba
Thank you so very much for the detailed post and for the explanation. Practical and extremely helpful advice as always! I'm going to aim for that level of Vitamin D between 50 and 100 and

by scuba (Feb 22)

It's near impossible to overdose on D to toxic levels while supplementing on 10,000 IU's per day or less. The body itself can make between 10,000 - 20,000 IU's on its own when exposed to

by MartinZA (Feb 22)

Hi everyone
A year or so ago I posted about my BCR-Abl levels and my view that it had something to do with Vitamin D. In summary, I was stuck on 0.03% for a very long time (over a year) before
Category: Treating CML

Replies: 3

Last updated: 22 February 2021
israel on 17 June 2019

Category: Treating CML

Replies: 9

Last updated: 20 February 2021

Looking to reduce dosage of Imatinib 600mg to 400mg
by israel (Feb 20)

1.03N/AN/AN/A20150.063N/AN/AN/A20160.070.02N/AN/A20170.0890.0132N/AN/A20180.020.0091N/AN/A20190.00.00.00.020200.000250.0120.00820.00420210.011
* N/A = Not available

by israel (Jan 28)

Hi,
Quick update on my dose reduction journey. I had two more PCR tests since I last posted to this thread:

- November: 0,0073
- January: <0,00025

The tests weren't

by israel (Aug 18)

Hi all,
I want to give an update on my treatment since I last opened this thread.
In July, I started to take a reduced dose of Imatinib every other day, alternating between 600mg today and 400mg

by israel (Jun 19)

Hi Poppert!
I didn’t have any PCR tests in between February 2015 and February 2016. My national healthcare system isn’t able to provide the optimal PCR test frequency, so big gaps
Category: Treating CML

Replies: 9

Last updated: 20 February 2021
vonnie on 20 February 2021

Category: Uncategorised

Replies: 0

Last updated: 20 February 2021

folic acid
by vonnie (Feb 20)

Hi there thanks to all that have answered my question about folic acid it is reassuring
Vonnie
Category: Uncategorised

Replies: 0

Last updated: 20 February 2021
Gareth on 19 February 2021

Category: Treating CML

Replies: 10

Last updated: 20 February 2021

I have CML!
by alexmcpee (Feb 20)

Hey Sandy,
No not at all thank you for your reply we are all learning on this journey 😀. Yeah it’s all a bit of mystery all the numbers. I have to this day remained slightly paranoid of my

by sandy craine (Feb 20)

Hi Alex,
Please do not think I was saying you were wrong or giving false information, I was just trying to say how complex the whole thing is and the white cell count on its own, does not

by alexmcpee (Feb 20)

Oh my bad. When I was diagnosed before I had my FISH my consultant said that I’d prob had CML for 3 years due to my high white cell count of 330 (which I understand causes the increase in

by Gareth (Feb 20)

My current bloods breakdown:
Haemoglobin 137
White count 36.7
Platelets 227
Neutrophils 29.5
G
Category: Treating CML

Replies: 10

Last updated: 20 February 2021
Jmbnccyn on 19 February 2021

Category: Uncategorised

Replies: 4

Last updated: 19 February 2021

dudas sobre selenio y vit d3 y k2
by Jmbnccyn (Feb 19)

Hello Sandy, thank you for your valuable information, I had planned to take a capsule every two days, but even if I live in Spain, since the diagnosis I have hardly received sunlight since I have

by Jmbnccyn (Feb 19)

Hi Alex, thanks again for your advice, I also do not know my vit d figures but I imagine they will be low since I have barely left home since October, so I will start taking the capsules with a view

by sandy craine (Feb 19)

Hello Jay,
My personal view is, you do not need to be as cautious/careful at your suggest with Vit D3+K2. If you can manage to get a test for your current Vit D level, then that will at least give

by alexmcpee (Feb 19)

Hi Jay,
I think its probably best to order a Vitamin D test to know your current level. But I do believe most of us are deficient from the copiuos amounts of reading I have done on the subject. And
Category: Uncategorised

Replies: 4

Last updated: 19 February 2021
vonnie on 17 February 2021

Category: Uncategorised

Replies: 1

Last updated: 19 February 2021

folic acid
by johnw1001 (Feb 19)

Hi Vonnie,
Apparently this is the effect of the tki or so I was told at my last consultation.Your consultant is probably referring to MCV -mean corpuscular volume;the normal range is 80-99 but mine

by vonnie (Feb 17)

Hi i had my three monthly blood results this morning all fine but my Consultant said my red cells were slightly larger than normal but there was no anaemia and my liver function was normal she told
Category: Uncategorised

Replies: 1

Last updated: 19 February 2021
Amanda2000 on 7 February 2021

Category: Uncategorised

Replies: 14

Last updated: 19 February 2021

Possibly Cml?! What do you think?
by Lisalater35 (Feb 19)

When I started out in 2016 my platelets were elevated. I had to go to hematologist as well. 2020 my WBC was elevated, but not to elevated. Finally The hematologist/Oncologist did a bone marrow

by Amanda2000 (Feb 16)

Also, last March when I first started going to the Hematologist, she done the Ana test and a few others and thought she done the Bcr-abl, but she she said she got to looking for it and couldn't find

by Amanda2000 (Feb 16)

My doctor said shes doing the Bcr-abl screening when i come back for lab work, she said she thought they had already done it, so we shall see.

by EvaH (Feb 16)

It would be unusual to have pain in your spleen at this low a level of wbc, from CML at least
Bcr-abl tests are incredibly costly, they would not be done without good suspecion, unless you insist
Category: Uncategorised

Replies: 14

Last updated: 19 February 2021
sandy craine on 5 February 2021

Category: Food & fitness

Replies: 9

Last updated: 8 March 2022

Vit D3 - levels required for immune health
by drarchanaj.adapt (Feb 18)

Thanks for the information

by Karinne (Feb 18)

I take vit D3 5,000IU/ vit K2 180mcg every other day. But I live in Southern California (lots of sun).

by drarchanaj.adapt (Feb 18)

How much of vitamin D supplements do you take on a daily basis ??

by Karinne (Feb 10)

Great idea!! And yes I am in SoCal.
Category: Food & fitness

Replies: 9

Last updated: 8 March 2022
scuba on 16 February 2021

Category: Uncategorised

Replies: 3

Last updated: 16 February 2021

Covid vaccine adverse events
by sandy craine (Feb 16)

I also use the Kings College (ZOE) Covid symptom study app and follow with interest insights based on their real time data. As Richard has very helpfully pointed out, they have seen an increase in

by Richard42 (Feb 16)

A Google search into Principia Scientific would suggest a need to exercise caution with anything they write.
I’ve been logging daily with an app run by Kings College London which has

by johnw1001 (Feb 16)

Hi Scuba,
I think your last observation is the relevant one.If one were willing and able to screen all of potential patients to be vaccinated for prior medical conditions then there is

by scuba (Feb 16)

https://principia-scientific.com/uk-government-releases-shocking-report-...
The highest incidence appears to be cerebral/eye disorders. One in ~300 chance of an adverse event.
Unfortunately,
Category: Uncategorised

Replies: 3

Last updated: 16 February 2021