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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
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