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ekhodges on 27 September 2023

Category: Treating CML

Replies: 4

Last updated: 11 October 2023

Lost TFR: Should I go back on Gleevec or Try 2nd Generation TKI?
by johnw1001 (Oct 11)

Hi

I come to this discussion a bit late but some views on your TFR dilemma

I have been on imatinib for 16 years and have had some blips along the way

At one stage about 8 years I

by AlastairC (Sep 29)

You are very welcome.
I think the Destiny results which start to provide information on whether TFR is likely to be possible for different patients may be of interest and use to you. This video (

by ekhodges (Sep 28)

Hi-

Thank you so very much for your reply. I didn't know about the Destiny protocol so this is helpful. Will definitely mention it to my doctor.
Thanks again,

Beth

by AlastairC (Sep 27)

Hi
Sorry to hear about your lack of success in TFR. Can't advise on alternative TKIs, but I'm sure someone will.
I was on 400mg imatinib (Gleevec) for around 11 years, and pretty much undetectable
Category: Treating CML

Replies: 4

Last updated: 11 October 2023
shayner on 4 October 2023

Category: Uncategorised

Replies: 1

Last updated: 5 October 2023

23 months off imatinib
by AlastairC (Oct 5)

When I redcued imatinib from 400mg to 200 mg I had significant improvements, in energy, in cramp, in gastric issues and didn't have any more eye bleeds. Any change when (a year later) I attempted

by shayner (Oct 4)

I haven’t been on the group for a while and I was wondering if anyone has any information on how people generally are coping after discontinuing imatinib and remaining undetectable ? Im coming up to
Category: Uncategorised

Replies: 1

Last updated: 5 October 2023
3oK@ on 26 September 2023

Category: Treating CML

Replies: 1

Last updated: 5 October 2023

Curcumin hype and potential risks
by scuba (Oct 5)

The article "The dark side of curcumin" written by Estefanía Burgos-Morón and others:

https://europepmc.org/article/MED/19830693

is a letter commentary that criticizes the use of

by 3oK@ (Sep 26)

After years of supplementing with curcumin, I realized that it's completely useless against CML, but may work pro-CML since it's a potent SIRT1 and Nrf2 activator, although it's not clear at what
Category: Treating CML

Replies: 1

Last updated: 5 October 2023
Danmason11 on 30 September 2023

Category: Treating CML

Replies: 7

Last updated: 5 October 2023

Should I consider a change in meds?
by Danmason11 (Oct 5)

Thanks Kirk - crikey, that is similar! Fingers crossed I get to the same place you’re at 👍
Hope you’re well. Take care

by RC Kirk (Oct 4)

Hi Dan,
It looks like you are responding well to treatment with imatinib. My downward trajectory was very similar to yours (see below). Unless you see a definite upward trend you should be fine

by Danmason11 (Oct 4)

Thanks Al 👍

by alexmcpee (Oct 3)

Stay the course it took me 2.5 years to get MMR on Nilotinib and I plateaued around 0.16% for 6 months then a sudden drop to 0.07% - it’s certainly a marathon and not a sprint and “slow” responders
Category: Treating CML

Replies: 7

Last updated: 5 October 2023
scuba on 21 September 2023

Category: Uncategorised

Replies: 3

Last updated: 5 October 2023

"undetected" update ... with a twist
by Vikram (Oct 5)

Congratulations......

by scuba (Sep 23)

I went three years undetected while taking 20 mg dasatinib (sprycel). After 3 years undetected, I stopped taking dasatinib and remained undetected for the next 3.5 years (latest PCR result). My

by Surabhi (Sep 22)

Hi Scuba
Thanks for sharing , I wanted to congratulate you on your result .
Could you share for how long you had the CML drug before stopping it

Also which TKi were you on
Keep healing and

by scuba (Sep 21)

I had my six month PCR test results come back "undetected". It is now 3.5 years undetected without drug. And for the first time in 3 years, I actually had to visit my doctor in person.
As it turns
Category: Uncategorised

Replies: 3

Last updated: 5 October 2023
philmc on 13 September 2023

Category: Side effects

Replies: 2

Last updated: 2 October 2023

TKI-induced diarrhoea after stomach bug
by philmc (Oct 2)

Hi Peter,
Thanks. I went to the GP and got tested, turned out I'd contracted "Cryptosporidium", which I'd never heard of before. My family were over it in a few days. I've started to get better in

by Dustylloyd (Sep 30)

Hi Phil,

Ironically i’ve just amended an holiday we’re going on shortly, because of continuous write ups about the possibility of norovirus running rife through the hotel, I checked on the

by philmc (Sep 13)

Hi,
I picked up a stomach bug while on holiday and am still experiencing diarrhoea several weeks later. It's undoubtably the TKI that's causing it now, because my stomach always starts cramping a
Category: Side effects

Replies: 2

Last updated: 2 October 2023
3oK@ on 26 September 2023

Category: Treating CML

Replies: 0

Last updated: 26 September 2023

Inositol Hexaphosphate, IP6, InsP6, Phytic acid
by 3oK@ (Sep 26)

Something I discovered accidentally and started 10 g a day a month ago. Will let you know if it makes any difference in mid-November.
The guy who discovered IP6 anti-cancer properties says of all
Category: Treating CML

Replies: 0

Last updated: 26 September 2023
MJW31415 on 31 August 2023

Category: Treating CML

Replies: 8

Last updated: 26 September 2023

My Story
by 3oK@ (Sep 26)

My understanding is that at "normal" doses selenium is a great prevention against cancer, but it actually protects established cancer cells just as it protects any other cells. Only at super-high

by MJW31415 (Sep 21)

Hi Martin,

I don’t know if 60mcg of selenite will give the necessary blood concentration. There are many places online to find 200mcg sodium selenite pills.
I actually started with 1 mg/

by MartinZA (Sep 12)

Thank you so much for this link. I've written to them to ask if they'll send the product to South Africa but as yet there is no response. In the meantime I was able to find a zinc + selenium

by MJW31415 (Sep 10)

Hi Martin,

Sorry I took so long to get back to you.

I found sodium selenite 2 mg tabs at https://norinutraceuticals.com/

I'm not sure about their shipping policies as I could not
Category: Treating CML

Replies: 8

Last updated: 26 September 2023
Misbah on 22 May 2022

Category: Getting help

Replies: 12

Last updated: 22 September 2023

Need more support with my CML diagnosis
by ColoradoGuy (Sep 22)

IMHO I would not put anything on hold. My kids were 5, 8, and 12 when I was diagnosed. My oldest just started university this fall. Of course I have gone through ups and downs with worries about

by Surabhi (Sep 22)

Hi Misbah

So sorry to hear about your diagnosis.
Hang in there , things will get better.
CML has now become a treatable disease , the initial few months can be challenging as you adjust to the

by Kamil (Jun 7)

Hi Misbah,
My partner was diagnosed on 12th of April, and we started treatment 2 weeks ago. We are both 22 years old.
She started on 100 mg dasatinib, but developed a skin rash alongside minor

by Misbah (Jun 6)

Thank you so much for taking the time to reply to me. I am so happy to hear about how you’ve dealt with this and I can’t tell you how much strength your words have given me.
Category: Getting help

Replies: 12

Last updated: 22 September 2023
Surabhi on 22 September 2023

Category: Side effects

Replies: 0

Last updated: 22 September 2023

Nerve damage on dasatinib
by Surabhi (Sep 22)

My mom has been on dasatinib for last ten years with BCR abl

She was at 100mg daily which lead to pleural effusion.

Her dose was reduced to 50 mg daily which controlled the pleural
Category: Side effects

Replies: 0

Last updated: 22 September 2023
RC Kirk on 21 September 2023

Category: About CML

Replies: 0

Last updated: 21 September 2023

Video: Great and Crazy Things We Do in Medicine
by RC Kirk (Sep 21)

The invention of TKI treatment for CML is still one of the best success stories in oncology.
https://www.youtube.com/watch?v=EycIsY70je0
The part concerning CML is about eight minutes long and
Category: About CML

Replies: 0

Last updated: 21 September 2023
Elizabethda53 on 19 September 2023

Category: Treating CML

Replies: 3

Last updated: 20 September 2023

Night sweats
by Buzzm1 (Sep 20)

Elizabethda53, you didn't mention your husband's latest PCR reading, or the Imatinib dosage he is on. Thanks in advance for this information.
Night sweats on Imatinib are somewhat rare but they can

by Elizabethda53 (Sep 20)

Well its my husband who was diagnosed in January 21.. stil gets these sweats about once a month gor a couple of days but extremely bad.. going through sheets duvets towels etc.

On imatinib and

by David Fitz (Sep 19)

Hi there,
Night sweats are common prior to diagnosis, and for the period shortly after. Once a patients blood counts return to normal, they typically go away.
How long have you been diagnosed for?

by Elizabethda53 (Sep 19)

Anyone suffer from severe night sweats?

Really bad.. saturated sheets etc?
Category: Treating CML

Replies: 3

Last updated: 20 September 2023
Sorin on 13 September 2023

Category: Treating CML

Replies: 0

Last updated: 13 September 2023

Closing in on a cure for common leukemia
by Sorin (Sep 13)

An article and the related study:
https://medicalxpress.com/news/2023-09-common-leukemia.html?utm_source=n...
https://ashpublications.org/blood/article-abstract/doi/10.1182/blood.202...
Category: Treating CML

Replies: 0

Last updated: 13 September 2023
scuba on 12 September 2023

Category: Side effects

Replies: 2

Last updated: 12 September 2023

Press Release: Dasatinib can cause kidney damage
by scuba (Sep 12)

The study is specific to kidney damage possibility as a result of dasatinib. Stopping dasatinib reverses the damage. Many patients can not switch drugs or stop taking sprycel, so it is important

by snowman 35 (Sep 12)

It is positive that seems to be reversible.I wonder if there are other factors that among with sprycel can cause the damage.Daily water intake ,diet...

by scuba (Sep 12)

Just issued press release:
Anyone taking dasatinib (i.e. sprycel) should be on alert for kidney damage and have a kidney test done routinely (test for elevated protein in the urine, or proteinuria)
Category: Side effects

Replies: 2

Last updated: 12 September 2023
Karinne on 10 September 2023

Category: Uncategorised

Replies: 2

Last updated: 11 September 2023

CML forum from LLS in the US
by Karinne (Sep 11)

Thanks

by RC Kirk (Sep 11)

https://community.lls.org/s/
You might have to create a new log in.

by Karinne (Sep 10)

Hello everyone,

Did anybody knows anything about the CML forum on the US site from LLS?

I used to have access and I cannot find it any longer?!

Best,

Karinne
Category: Uncategorised

Replies: 2

Last updated: 11 September 2023
suvankardas on 11 September 2023

Category: Children & young people

Replies: 1

Last updated: 11 September 2023

BCR ABL IS on the rise
by scuba (Sep 11)

Change drugs.

(Same thing happened to me with imatinib. It didn't work, so I was switched to sprycel which did work (and on a very low dose as well).

by suvankardas (Sep 11)

Since my detection in last November, I am on Imatiniv. Due to serious side effects doc had to reduce my dose from 400 to 300. I am on it till today. Last month my BCR ABL IS has increased from 1.28
Category: Children & young people

Replies: 1

Last updated: 11 September 2023
snowman 35 on 8 September 2023

Category: Other conditions

Replies: 4

Last updated: 8 September 2023

Sprycel stability
by snowman 35 (Sep 8)

Thank you very much Scuba!!

by scuba (Sep 8)

As long as the sprycel pills are intact, it's not an issue.

by snowman 35 (Sep 8)

Hi Scuba

A cylidrical white thing that contains really small pellets to absorb humidity in the bottle..

by scuba (Sep 8)

Unless the pill is decomposed into a granular mush (i.e. no more pill), it is fine. Dasatinib is manufactured as a salt for stability and to help it dissolve easily when ingested. If exposed to high
Category: Other conditions

Replies: 4

Last updated: 8 September 2023
bendicco on 10 August 2020

Category: Side effects

Replies: 12

Last updated: 30 August 2023

Can't live like this!
by Harriet (Aug 30)

Hi,I had issues with Gleevec, even on 200mg, I just couldn't function anymore,bone pain, joint Pain no energy whatsoever, I got changed to Sprycel 20mg which was pretty awful to begin with but

by bendicco (Aug 12)

You are so right! I have read that all TKI meds have this issue but I imagine that they affect each of us differently. I will have that discussion with him! I am so happy for you in that all

by bendicco (Aug 12)

Hi. Yes I am going to have that conversation with him regarding lowering the dose! Although that does frighten me a bit, but I guess we could always go up again. Thank you for your help!

by Nimbus2 (Aug 12)

Consultants have a mantra that goes, "you cannot blame imatinib for all of your ills". I accepted that the side-effects from imatinib were the cost of achieving a cytogenetics response.
Category: Side effects

Replies: 12

Last updated: 30 August 2023
alexmcpee on 29 August 2023

Category: Uncategorised

Replies: 4

Last updated: 30 August 2023

Diabetes drug to combat cml
by alexmcpee (Aug 30)

Yes mate I was told this by my doc when I was diagnosed here in the UK. We certainly are a unique bunch haha. Hope you’re well mate

by Buzzm1 (Aug 29)

Peter, The American Cancer Society's estimates for chronic myeloid leukemia (CML) in the United States for 2023 are: About 8,930 new cases will be diagnosed with CML (5,190 in men and 3,740 in women

by Dustylloyd (Aug 29)

Hi Alex,
The article is interesting, in a roundabout way it also bought home to me how lucky we are for the discovery of tki medication, any additional help from other medicines is welcoming news,

by RC Kirk (Aug 29)

I'm copying and pasting this just in case the original link becomes outdated in the future.
Diabetes drug may offer new treatment hope for chronic myeloid leukaemia
Published: 17 August 2023
A drug
Category: Uncategorised

Replies: 4

Last updated: 30 August 2023
cmhall604 on 18 July 2023

Category: Uncategorised

Replies: 3

Last updated: 28 August 2023

PCR Increase After Dose Reduction
by scuba (Aug 28)

Hi Chris,
That is great news!

by cmhall604 (Aug 28)

Hi Scuba,
Thanks so much for your informative reply. We spoke to another doctor in the meantime who made the same recommendation as you to consider a switch to dasatinib. However, her most recent

by scuba (Jul 18)

Her doctor is following protocol at three consecutive increases (one log) to establish a trend when a patient is already in MMR.

At this stage given that she remains in MMR (PCR < 0.1%),

by cmhall604 (Jul 18)

Hello all,
Haven't checked in in a while but I wanted to get your thoughts on some recent trends with my wife's test results.
She has been taking nilotinib for 3.5 years without any noticeable side
Category: Uncategorised

Replies: 3

Last updated: 28 August 2023