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

steven7 on 18 March 2021

Category: Uncategorised

Replies: 2

Last updated: 19 March 2021

Covid vaccine for dasatinib
by steven7 (Mar 19)

Thank you John. I really appreciate your sharing.
I am in Canada where the vaccine roll out is slower than UK. The general priority here is also given to senior cohorts. then younger ones

by johnw1001 (Mar 19)

Hi Steven,
You dont say which country you in as that might affect the range of vaccines on offer.If you are in the UK then you would be offered either the Pfizer one or the Astra Zenica vaccine;

by steven7 (Mar 18)

Hi everyone,
Can someone share your experience of covid vaccine as patient taking dasatinib? Ideally, can you tell your age and the vaccine brand.
I might be able to take the shot, but not sure if
Category: Uncategorised

Replies: 2

Last updated: 19 March 2021
johnw1001 on 18 March 2021

Category: Treating CML

Replies: 0

Last updated: 18 March 2021

ASH Conference Proceedings December 2020
by johnw1001 (Mar 18)

Hi All,
For anyone new to CML it might be good to explain that every year in December in United States there is a major conference for hematologists worldwide where any advances in treatments
Category: Treating CML

Replies: 0

Last updated: 18 March 2021
xero on 17 March 2021

Category: Side effects

Replies: 0

Last updated: 17 March 2021

Sprycel and hair loss
by xero (Mar 17)

Hi,
I have been on Tasigna during 5 years (now on 300mg a day). Worked pretty good for me (PCR around 0.02) but I experienced progressive hair thining all around my head.
My doc offers me to
Category: Side effects

Replies: 0

Last updated: 17 March 2021
Toni on 31 January 2019

Category: Uncategorised

Replies: 10

Last updated: 17 March 2021

Leg pains
by TJD (Mar 17)

Hi ,its 20 years since I was diagnosed with CML ,I actually took part in the clinical trial for

Imatinib and I too experienced severe muscle pain,I was prescribed Quinnine Sulphate tablets

by Ray Sell (Mar 15)

Nigel, thank you for your information and warning. Now on 400mg imatinib my leg cramps aren't as frequent and my hand and toe cramps are gone, so I don't take anything. 2 weeks

by NigelD (Mar 11)

I've been on Imatinib (800 down to 400 mg) since 2000. The cramps started almost from day 1 and can be crippling in my hands and legs. Went on to Quinine Sulphate 300mg twice a day and that

by Vikram (Feb 8)

Same problem.....
muscle cramps, lang pain...

Diagnosis (end of 2007)
400 grm Imtinib.....
But
After 8-9 months pain gone automatically......
Last one year one time muscle cramps....... (
Category: Uncategorised

Replies: 10

Last updated: 17 March 2021
EvaH on 13 March 2021

Category: Reproductive health

Replies: 3

Last updated: 16 March 2021

Menopause (again)
by EvaH (Mar 16)

Lets see if i can get it where i am.

Hormonal treatment seems to be under lock and key.
Anything else you've heard of that helps?

by sandy craine (Mar 16)

Hi Eva,
I still recommend natural progesterone cream to counter the symptoms of menopause . I had almost immediate relief after including this product in my daily routine.
Sandy

by EvaH (Mar 14)

Also: how was this reclassified to reproductive health, im pretty sure i put it under 'other'. Menopause relates to hormones and is gender specific but its no more reproduction than puberty is!!

by EvaH (Mar 13)

Hi all
I see there are some posts on menopause and that Sandy recommends a natural progesterone cream. Zavies on link to a discussion on another board from 12+ years ago is broken, so i want to see
Category: Reproductive health

Replies: 3

Last updated: 16 March 2021
David787 on 13 March 2021

Category: Side effects

Replies: 10

Last updated: 16 March 2021

Cramp...any solutions?
by David787 (Mar 16)

Many thanks to all those who have replied, thanks to Alastair and to Sandy for the suggestions.
David

by sandy craine (Mar 16)

You may find benefit from supplementing with magnesium and/or potassium - electrocyte concentrate. The are many brands available - here are a couple of suggestions:
viridian-potassium-and-magnesium-

by AlastairC (Mar 15)

I suffered a lot with cramp on 400mg imatinib - rubbing in magnesium "oil" helped a lot. I lost most of the cramp when I reduced to 200mg following the Destiny protocol - the change from

by GrahamJ (Mar 15)

I take Imatinib 400mg and suffered from really extensive leg cramps particularly during the night, often it seemed as thought it was all the muscles in both legs at once which was very painful and I
Category: Side effects

Replies: 10

Last updated: 16 March 2021
johnw1001 on 15 March 2021

Category: Food & fitness

Replies: 1

Last updated: 16 March 2021

Living with CML:lifestyle/ nutritional response
by Jmbnccyn (Mar 16)

Hello, regarding this topic it seems convenient to mention some information that I found interesting, which I found in Dr. David Servan-Schreiber's anti-cancer book and talks about certain herbs

by johnw1001 (Mar 15)

Hi All,
For some time like others perhaps I have been considering whether there are any actions or any additional medications that might help to maintain or improve the response to a tki and to
Category: Food & fitness

Replies: 1

Last updated: 16 March 2021
israel on 13 March 2021

Category: Uncategorised

Replies: 0

Last updated: 13 March 2021

Hormetic Response
by israel (Mar 13)

I came across the term hormesis which is, in summary, a conceptual depiction of the duality between low dose stimulation versus high dose inhibition. Interestingly, at the conceptual level, hormesis
Category: Uncategorised

Replies: 0

Last updated: 13 March 2021
Sally Martin on 12 March 2021

Category: About CML

Replies: 6

Last updated: 13 March 2021

Second jab following antibody research
by Christine R (Mar 13)

https://bloodcancer.org.uk/news/does-this-new-study-mean-blood-cancer-pa...

This has a few more details about the participants.

by David787 (Mar 13)

I had my second vaccination at the 11 week point. No amount of nagging my surgery managed to get me an earlier date. Still, it’s done now!
David

by johnw1001 (Mar 12)

Thanks David,
This is the same site as I tried earlier today and comes up with the same message that "You are not eligible to book through this service" It advises to contact the provider

by Sally Martin (Mar 12)

Thank you for your replies. I have managed to get a second jab booked for 24th March which will be just under 8 weeks after my first jab, so I’m happy about that. I think you’re right
Category: About CML

Replies: 6

Last updated: 13 March 2021
sandy craine on 12 March 2021

Category: Uncategorised

Replies: 2

Last updated: 12 March 2021

Help support CML Support Group
by AlastairC (Mar 12)

You can also support CML Support Group through https://www.easyfundraising.org.uk/. If you set up an account to support CMLSG and use the site as a search engine to find your favoured retailer a %

by johnw1001 (Mar 12)

Hi All,
I have just checked my Amazon account and it indicates that I have made a total contribution of £42.95 since having joined up to Smile , but I use Amazon a lot.
I dont think that

by sandy craine (Mar 12)

Chronic Myeloid Leukaemia Support Group recently received a quarterly donation of £34.63 from AmazonSmile, thanks to customers shopping at smile.amazon.co.uk or with AmazonSmile turned ON
Category: Uncategorised

Replies: 2

Last updated: 12 March 2021
Mr_T1987 on 11 March 2021

Category: Uncategorised

Replies: 3

Last updated: 12 March 2021

Grapefruit avoidance
by Christine R (Mar 12)

I think it is the juice and flesh of a grapefruit that we need to avoid and as far as i am aware the peel is used as a botanical in gin and so should be ok.

by David Fitz (Mar 12)

Products with a trace amount are very likely to be totally fine.
The reason we should avoid grapefruit is because it consumes an enzyme that is used to break down our TKIs. So if the grapefruit has

by CM-elon (Mar 12)

Hi Jay,

I spent a while avoiding grapefruit in any form because...well, just because it was kinda in there with pomegranate as something to avoid. I take Nilotinib 300mg 2x daily.
I am

by Mr_T1987 (Mar 11)

Evening all,
Been a looking time since I've posted on here but thought why not now.
As a general update, I achieved MMR around November 2020 after 2 1/2 years on Imatinib, Dasatinib and finally
Category: Uncategorised

Replies: 3

Last updated: 12 March 2021
Sally Martin on 7 March 2021

Category: Side effects

Replies: 4

Last updated: 12 March 2021

Hair loss nilotinib
by Sally Martin (Mar 12)

Thanks Jay, that sounds identical to my experience except I wasn’t that hairy to start with (or at least not on my body!) I expect it’s really the least of my worries on a grand scale

by Mr_T1987 (Mar 11)

Hi Sally,
I have also been taking Nilotinib for about the same timescale as yourself. I started to notice some hair loss around the turn of the year. Fortunately for myself, it has only affected my

by Mr_T1987 (Mar 11)

Hi Sally,
I have also been taking Nilotinib for about the same timescale as yourself. I started to notice some hair loss around the turn of the year. Fortunately for myself, it has only affected my

by Dustylloyd (Mar 11)

Hi Sally, this subject has been raised a few times on cml support, and quite simply, and not being unsympathetic to your situation, hair loss and changes in the hair in general are common side
Category: Side effects

Replies: 4

Last updated: 12 March 2021
Mari_lyn on 28 February 2021

Category: Treating CML

Replies: 7

Last updated: 12 March 2021

Why am I so slow...
by Mr_T1987 (Mar 12)

Evening,
I was a slow responder to treatment. Started on Imatinib which caused me all sorted of issues. I changed to Dasatinib which was working but never got me into MMR and then developed a

by AlastairC (Mar 9)

Hi
There are quite a few people who have stuck on a plateau of BCR-ABL results for 6-9 months and then it has suddenly dropped. In my case I was around 0.6% from about 9 months post diagnosis to 18

by Mari_lyn (Mar 8)

Thank you for your advice. That’s exactly what my dr said as well, that he wants to await the next results. And that’s it is not a lineair line but that it moves in sort of a ‘wave

by ColoradoGuy (Mar 4)

It looks like you are just past 6 months and at 11%. I believe the target is under 10% at least by six months. That being said I don't think Dasatinib has made it's full effect
Category: Treating CML

Replies: 7

Last updated: 12 March 2021
snowman 35 on 11 March 2021

Category: About CML

Replies: 0

Last updated: 11 March 2021

Carob(African locust bean) flour and sprycel interactions
by snowman 35 (Mar 11)

Hi everyone
I read that carob is a very nutritious food with a lots of fibers and vitamins! I have ibs syndrome and I can't eat a lot of fibers but I ve noticed that bread made of carob flour does
Category: About CML

Replies: 0

Last updated: 11 March 2021
Heidi S on 10 March 2021

Category: Uncategorised

Replies: 1

Last updated: 11 March 2021

1.5 years Sprycel at .1% BCRABL and supplements
by Felix (Mar 11)

Hi, you are only 1.5 years in ,lots of time to decrease before you even think of trying TFR,
Vitamins I take after breakfast ,
Vit D 3
Vit K
Vit B12
Vit C
Selenium ,
Fish oil
Zinc
2 x

by Heidi S (Mar 10)

I am 38 y/o female with diagnosed CML for 1.5 years. I am taking Sprycel and my BCR ABL has slowly decreased to .1%. I do not want to change medication because I handle the side effects
Category: Uncategorised

Replies: 1

Last updated: 11 March 2021
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