CML Horizons 2024 Videos and Presentations

iCMLf Publicaions.

iCMLf Forum 2022: The Next Big Challenges in CML? Webstreams

iCMLf publications: A selection of interesting articles on CML from peer-reviewed journals

You are here

Forum

Tanya Cuffe on 10 March 2021

Category: Uncategorised

Replies: 4

Last updated: 11 March 2021

Diindolylmethane safety whilst on TKI’s?
by Tanya Cuffe (Mar 11)

Thanks Scuba. Am going to wait 3 plus years and if still undetectable may give it a go. I would like to try your 20mg every other day routine but don’t think Haemotologist would be on board

by scuba (Mar 10)

I take dasatinib 20 mg every other day.
According to M.D. Anderson publications TFR can be tried with 50-50 success at two years and increasing to 55-60% success after 4 years. The minimum before

by Tanya Cuffe (Mar 10)

Thanks Scuba!Are you still on 10mg Dasatinib? The thing is I’ve been taking and have bought heaps of that Diindolylmethane supplement and I just need know it’s safe to take. It gives

by scuba (Mar 10)

Eat broccoli and you will get all you need plus other nutrition broccoli provides. Making sure your vitamin D level is in range (50 - 100 ng/ml) will help maintain proper estrogen in the body as
Category: Uncategorised

Replies: 4

Last updated: 11 March 2021
Barry Allsop on 25 June 2011

Category: Uncategorised

Replies: 2

Last updated: 10 March 2021

CML and Prostate Cancer
by gman50 (Mar 10)

I see this was posted almost 10 years ago. Any updates?

by sandy craine (Jun 27)

Dear Barry,

sorry to hear that you now have a diagnosis of prostrate cancer! I have noticed over the years that TKI's have been in various trials with other cancers and prostate is one that I

by Barry Allsop (Jun 25)

How fortunate to log onto the site and find a post about a new drug Bafetinib for CML and for prostate cancer.

I have had CML since 2004 and my PCR results now come in very steadily around 0.
Category: Uncategorised

Replies: 2

Last updated: 10 March 2021
Aeje10327 on 9 March 2021

Category: Uncategorised

Replies: 1

Last updated: 9 March 2021

PCR question
by scuba (Mar 9)

No clinical significance. Any PCR < 0.01% is in the noise of the test in terms both precision and accuracy.
https://www.dnasoftware.com/our-products/copycount-qpcr-analysis-copynum...

by Aeje10327 (Mar 9)

I found out the lab I use (at a major academic center in the US) has a pcr with a sensitivity of 0.0064. If I ever become “undetectable” I will never actually know if I am at 0.0032.
Category: Uncategorised

Replies: 1

Last updated: 9 March 2021
Joe123 on 8 March 2021

Category: Blood tests

Replies: 3

Last updated: 9 March 2021

log reduction
by sandy craine (Mar 9)

If you have stable qPCR results of less than 0.1% you are indeed in remission. The more zeros you have after the decimal point the deeper your molecular response is.
Sandy

by Joe123 (Mar 8)

Thanks David. Is this supposed to be a positive result ? What is the log reduction I need to reach to be in remission.

by David Fitz (Mar 8)

Hi,
It means a deep response.
100% is our baseline for PCR testing, and a log is a multiple of 10.
So a 1 log reduction from 100% is 10%. A 2 log reduction from 100% is 1%, and so on.
A 5 log

by Joe123 (Mar 8)

Can someone let me know what a 4.9 BCR-ABL log reduction mean
Category: Blood tests

Replies: 3

Last updated: 9 March 2021
Lapointe on 8 March 2021

Category: Uncategorised

Replies: 0

Last updated: 8 March 2021

Sprycel
by Lapointe (Mar 8)

was on sprycel 100 mg for 10 years. Last june i had to switched to the generic becauz the covering. 18 days after i got the PE. I know it is a common side effect of the sprycel but as the time lapse
Category: Uncategorised

Replies: 0

Last updated: 8 March 2021
Karthikeyan on 22 May 2020

Category: Uncategorised

Replies: 44

Last updated: 20 August 2022

Generic Dasatinib in india
by Vikram (Mar 8)

What's different between novartis imtinib and generic imtinib??
Side effects??
Best??....
Price???
Novartis imatinib 400 mg price in india 6000 india ruppey???
Gipap program closed in india
New

by puruvyas (Dec 17)

I just wanted to say that you guys are really doing the most useful discussion here, it will surely help many people. Get well soon friends.

by Vijay Kumar Verma (Nov 24)

If you don't find dasatinib in Hyderabad, just inform me i will courier it for you from Delhi.you can also contact kartikayan, he is from South India.

by Murthy.my (Nov 21)

Where can I get this medicine in Hyderabad?
Category: Uncategorised

Replies: 44

Last updated: 20 August 2022
Alaina on 8 March 2021

Category: Uncategorised

Replies: 1

Last updated: 8 March 2021

Magnesium
by scuba (Mar 8)

This is the one I take:
https://www.healingheartdiseasenaturally.com/magnesium-taurate-benefits/
and specifically for heart benefits. Two in the morning and two before sleep. 400 mg of Mg per day

by Alaina (Mar 8)

Hello everyone. I did some reading on the previous posts listed here related to Magnesium Taurate. My question is what brand and dose do you buy and take? I went to a local vitamin/herb store and
Category: Uncategorised

Replies: 1

Last updated: 8 March 2021
johnh on 6 March 2021

Category: Uncategorised

Replies: 5

Last updated: 8 March 2021

Changing from Imatinib after 15 years
by johnh (Mar 8)

Thank you Diane (and all the others) for your response(s). Yes I do take D3 (4000IU) every day. I have actually become somewhat of a crusader for it, asking everyone I meet if they take it.

by Dustylloyd (Mar 7)

Hi John, I was diagnosed January 2015 and was on imatinib for the first 9 months, in September 2015 at my check up I was informed the medication had “failed” the oncologist even asked me

by Felix (Mar 6)

Hi, if you have to Dasatinib at 20 mg should do the trick with hopefully no side effects ,also aswell as vit d and k2 take a couple of grams of Turmeric with added black pepper that might help too ,

by Diane CW (Mar 6)

Hello John
Do you take a vitamin D3 supplement?
there are many threads on here about the benefits of vitamin D3 in conjunction with K2.

While I am not saying it will be the answer
Category: Uncategorised

Replies: 5

Last updated: 8 March 2021
sandy craine on 1 March 2021

Category: Other conditions

Replies: 0

Last updated: 1 March 2021

Covid Vaccines - Webinar 3rd March 4pm GMT
by sandy craine (Mar 1)

On Wednesday 3rd March at 4pm GMT, we have another COVID vaccines webinar.
Tim, Prof. Ellie Barnes and Dr. Anna Goodman will look at the latest data from vaccines logged with ZOE, and this time we
Category: Other conditions

Replies: 0

Last updated: 1 March 2021
chrissie on 23 February 2021

Category: Uncategorised

Replies: 8

Last updated: 28 February 2021

Covid vaccines and blood cancers
by chrissie (Feb 28)

I had the Oxford Astra Zeneca one 4 weeks ago. it seems to be the same concern for all the vaccines, though although the data shows that the elderly are protected OK with both vaccines currently

by mil (Feb 28)

Hi Crissie, what vaccine did you receive?
Thank you for let us know.

by Christine R (Feb 24)

I would be very surprised if they had any actual data on the effectiveness in us. I am on the vaccine register as available for trials but i have never been called.
Also i was a participant in

by Deni H (Feb 23)

Hi All
I spoke to my nurse specialist regarding the vaccine. She said that to definitely have the injections but instead of giving me upto 95% protection against Covid it would only be around 70%.
Category: Uncategorised

Replies: 8

Last updated: 28 February 2021
mil on 24 February 2021

Category: Uncategorised

Replies: 5

Last updated: 28 February 2021

Sinopharm Vaccine Covid 19
by EvaH (Feb 28)

Its a inactivated vaccine, you should be ok
Im 4 years post diagnosis and had both sinopharm jabs without issue

by mil (Feb 26)

Thank you AF!

by mil (Feb 26)

Thank u Alex!

by AF (Feb 26)

I received both doses of Sinopharm with no side affects.
Category: Uncategorised

Replies: 5

Last updated: 28 February 2021
TinaOS on 28 February 2021

Category: Children & young people

Replies: 2

Last updated: 28 February 2021

New member
by sandy craine (Feb 28)

Welcome to this forum. One thing we all have in common is the shock felt at diagnosis so you are not alone. However, CML, especially in chronic phase, is treated very successfully since the advent

by TinaOS (Feb 28)

Not sure really.. I'm not very sure about which way the drugs go.. I'm very happy on this so far as zero side affects.. I'm living my life as normal.. Thanks

by snowman 35 (Feb 28)

Why your doc didn t put you in a second generation drug? Sprycel or tasigna? It is very strange!

by TinaOS (Feb 28)

Just like to introduce myself as new member.. Diagnosed in Aug 20.. Worst day of my life 🙈 diagnosed at 180% and on imanitib for 3 months only dropped to 80%.. On Bosulif now with minimal side
Category: Children & young people

Replies: 2

Last updated: 28 February 2021
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