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Nimbus2 on 9 June 2023

Category: Uncategorised

Replies: 0

Last updated: 9 June 2023

A CML patient
by Nimbus2 (Jun 9)

There is a gentleman on Youtube who is having a transplant today.
https://www.youtube.com/watch?v=MWbozLwwo9M
Can anyone go there and give a bit of encouragement in the Youtube comments?
Category: Uncategorised

Replies: 0

Last updated: 9 June 2023
ipmaki on 29 April 2019

Category: Treating CML

Replies: 100

Last updated: 7 June 2023

Sprycel - Lack of Response
by ColoradoGuy (Jun 7)

Thats great to hear. I hit a few plateaus (most recent at about 0.020), but my latest result was 0.008. It just takes some of us longer, but take your meds as indicated and supplements and you

by Taper11 (Jun 5)

I thought I would update my results as others have done.
I was stuck at a ~2 log reduction for 8 months on Dasatinib. After switching to Bosutinib my results remained stagnant for another 4-5

by Buzzm1 (Oct 3)

Taper11, your numbers are still relatively low, so request that you start on Bosulif/Bosutinib 200mg, and test, before moving up to 300mg. If Bosutinib is effective, it will be effective at a

by Taper11 (Oct 3)

That's great news, Jill. Good luck with dialing in your dose.
Adding my own results on 100mg Dasatinib. Latest PCR was down surprisingly, but FISH showed around 2%. I'm a little unsure on the
Category: Treating CML

Replies: 100

Last updated: 7 June 2023
Heidi S on 21 May 2023

Category: Uncategorised

Replies: 8

Last updated: 3 June 2023

Please be cautious of Quercetin
by Nimbus2 (Jun 3)

I am taking a supplement that contains the following:
Lipsomal Quercetin (phytosome) 800 mg

Bromelain 100 mg

Vitamin C 20 mg

Turmeric 15 mg

Zinc 15 mg
This is a bit of a

by Nimbus2 (Jun 3)

This is a retrospective cohort study.
"This retrospective cohort study found that dasatinib used for the treatment of malignant disease may have an antidiabetic effect comparable to or perhaps

by Nimbus2 (Jun 3)

This is interesting because the experiments are performed on monkeys rather than the usual mice. The quercetin was taken orally, but the quantity was not specified. The usual problem with quercetin

by 3oK@ (May 26)

2 days ago I started quercetin, let’s see how it goes. From what I read, up to 1 g per day with periodic breaks should be okay. I plan to go month on - month off and keep an eye on iron level and
Category: Uncategorised

Replies: 8

Last updated: 3 June 2023
Ronniejohn46 on 31 May 2023

Category: Blood tests

Replies: 6

Last updated: 2 June 2023

What does a FISH BCR-ABL1 t(9,22) percentage tell me?
by scuba (Jun 2)

It is not possible for you to have a FISH percentage (>50%) and be undetected for bcr-abl at the same time unless FISH was used for a different blood disorder (not CML). There could be an error

by David Fitz (Jun 1)

Is this possibly some sort of atypical CML?
Generally FISH from bone marrow results correlate well to PCR (molecular) results from blood. Clearly they are not correlating in your case.
At the heart

by Ronniejohn46 (Jun 1)

I'm not sure either. It could be that I showed concerned about the high FISH and the sustained log>5 reduction.

by Ronniejohn46 (Jun 1)

No, not that I have been briefed. I'm definitely not comfortable with how my case is being handled. I have contacted M.D. Anderson about obtaining a second opinion and, perhaps, additional testing
Category: Blood tests

Replies: 6

Last updated: 2 June 2023
No_Fun_2022 on 12 May 2023

Category: Treating CML

Replies: 11

Last updated: 1 June 2023

Dasatinib increasing dose to 140mg for deeper response.
by Buzzm1 (Jun 1)

Following along with what Alex is saying, the next best thing to TFR and not taking any TKI, is to gradually reduce your TKI dosage to the lowest level possible beginning at the earliest appropriate

by alexmcpee (May 30)

Don’t increase dose reduce!
You’re just 12 months and not far from MMR. I made MMR at 2.5 years the guidelines are massively outdated and a cause for a lot of anxiety. 5 years in I am borderline MR4

by 3oK@ (May 26)

Hi Sorin,
Sorry for the confusion.
Fasting is a great holistic therapy for the entire body, especially our immune system, and I doubt that CML cells could gain additional benefits from it.
It seems

by Sorin (May 22)

Unbelievable. I mean I've been reading for many years ,here, on this forum, that fasting is very useful in the fight against CML. Now I find out that things are not nailed down and fasting along
Category: Treating CML

Replies: 11

Last updated: 1 June 2023
Alien69 on 20 May 2023

Category: Treating CML

Replies: 0

Last updated: 20 May 2023

A Phase 2 Study of Asciminib as Initial Therapy for Chronic Myeloid Leukemia in Chronic Phase
by Alien69 (May 20)

See this article A Phase 2 Study of Asciminib as Initial Therapy for Chronic Myeloid Leukemia in Chronic Phase
See also New articles from ASH 2022 about Asciminib
Category: Treating CML

Replies: 0

Last updated: 20 May 2023
David Fitz on 20 May 2023

Category: Uncategorised

Replies: 0

Last updated: 20 May 2023

NCRI patient survey - UK patient survey
by David Fitz (May 20)

The UK National Cancer Research Institute (NCRI) blood cancers groups are in the process of evaluating their research priorities and setting their strategies to address the most pressing needs in
Category: Uncategorised

Replies: 0

Last updated: 20 May 2023
scuba on 5 December 2020

Category: Uncategorised

Replies: 13

Last updated: 17 May 2023

Vitamn D - continued ...
by 3oK@ (May 17)

Here is another one.
A pilot study assessing the effect of prolonged administration of high daily doses of vitamin D on the clinical course of vitiligo and psoriasis

https://www.ncbi.nlm.nih.

by RC Kirk (May 15)

Dr. John Campbell - https://rumble.com/v2nwtnk-vitamin-d-larger-doses.html
Vitamin D, larger doses
Daily oral dosing of vitamin D3 using 5000 TO 50,000 international units a day in long-term

by colleencrane1 (Dec 14)

Sandy,
Would 5,000IU with vitamin K be good to start with. Right now I take about 3,000IU with no vitamin K, but read some of the posts and decided to get the one with vitamin K as well. I am going

by alexmcpee (Dec 9)

Cheers Scuba I have asked my consultant for my records or a test if they don’t have it. Will post back findings once I know more 👍
Category: Uncategorised

Replies: 13

Last updated: 17 May 2023
SS86 on 6 August 2022

Category: Reproductive health

Replies: 5

Last updated: 16 May 2023

Is there a possibility to be off Dasatinib and try to concieve ?
by healthyhabits (May 16)

Hi, I have spoken to my oncologist and two fertility specialists about this, and they mentioned being maintained on interferon injections for the duration of pregnancy. I think it depends on your

by David Fitz (Aug 7)

For women? It’s perfectly advisable once you stop taking dasatinib assuming your numbers are low enough to support TKI withdrawal. As Scuba says, dasatinib has a short half life so it is

by scuba (Aug 7)

The half life of dasatinib in the body is < 5 hours
https://pubmed.ncbi.nlm.nih.gov/18420784/

by SS86 (Aug 6)

Thanks Scuba. Your responses are awaited and are always reassuring.
Also, do you know how long the medicine needs to be stopped for it to get out of body before the plan to have a baby
Thanks
Category: Reproductive health

Replies: 5

Last updated: 16 May 2023
TimoD on 2 May 2023

Category: About CML

Replies: 8

Last updated: 12 May 2023

Management of chronic myeloid leukemia in 2023 – common ground and common sense
by scuba (May 12)

Interesting ... not so in the US.

by David Fitz (May 11)

The prices in the UK are quite clear*, and they escalate pretty linearly with dose:
https://bnf.nice.org.uk/drugs/dasatinib/medicinal-forms/
*it’s not actually quite as simple as this, but it’s

by scuba (May 10)

The pricing of drugs is a dark art as many of us have experienced. But in my discussions with pharma companies (at the business level), drugs (TKI's, etc.) are not priced by the 'milligram'. The

by AlastairC (May 10)

I had a related discussion with my consultant haematologist today. Many of you will remember that after many years on 400mg imatinib, I reduced to 200mg for 12 months and then stopped. My TFR
Category: About CML

Replies: 8

Last updated: 12 May 2023
ktruesde on 4 May 2023

Category: Treating CML

Replies: 8

Last updated: 8 May 2023

Switched from Sprycel to Bosulif
by Buzzm1 (May 8)

Denise, congratulations on successfully gradually reducing your dosage on your own. If you continue to test undetected at Dasatinib 10mg/day I would encourage you to either further reduce your

by Felix (May 7)

Hi,I started on 50 mg Dasatinib after refusing to start on 100mg ,and as my BCR ABL went down I gradually reduced my dose myself .Not once has my doctor ever suggested a reduction ,I just told her

by ktruesde (May 5)

Scuba thanks so much for taking the time with this. Great information and I will consider this and also consult with my Oncologist at my next visit. Maybe I am one of those people, like you, who

by scuba (May 5)

https://www.thelancet.com/journals/lanhae/article/PIIS2352-3026(21)00342-2/fulltext

https://ashpublications.org/blood/article/136/Supplement%201/3/471908/Th...
I was never prescribed 100 mg
Category: Treating CML

Replies: 8

Last updated: 8 May 2023
davidmoler08 on 19 April 2023

Category: Side effects

Replies: 8

Last updated: 5 May 2023

Newly diagnosed
by alexmcpee (May 5)

Hi David and Healthyhabits,
There are plenty of us “younger” guys on here so you’re not alone. I’ve been here for 5 years diagnosed at 37 now 43. In fact I am seeing more and more younger people

by healthyhabits (Apr 25)

Hi David - in a similar situation, I am 31 and turning 32 in a week. Lack of data for our age group is scary but we're probably stronger in numbers than is published. Stay strong and stay in touch

by davidmoler08 (Apr 21)

We started on 100 because I have an abnormality with missing Y- chromosome and some studies said to start more aggressive and some said it should not change things. I agreed with being more

by scuba (Apr 21)

A transplant is a last resort when all else fails. By 2014, the need for bone marrow transplant to treat CML dropped to less than 6%. Today it is less than 1%.

You will never need a transplant
Category: Side effects

Replies: 8

Last updated: 5 May 2023
Heidi S on 4 May 2023

Category: Uncategorised

Replies: 2

Last updated: 4 May 2023

Out of MMR… again
by Heidi S (May 4)

There are no tests specifically for Quercetin with dasatinib for CML response. Yes, you can patch research together that gives you hope that it will work synergistically, but it has not been

by scuba (May 4)

Quercetin alone is unlikely to impact CML one way or the other and works as a strong anti-inflammatory. It helps old cells enter apoptosis (cell death).

Your "rise" in bcr-abl is not

by Heidi S (May 4)

40 year of female taking 100mg Sprycel. In three months, I will have been diagnosed for four years.
Recently I started adding Quercetin because I thought it might help. My BCR ABL went from .05%
Category: Uncategorised

Replies: 2

Last updated: 4 May 2023
sandy craine on 29 April 2023

Category: Treating CML

Replies: 2

Last updated: 4 May 2023

Generic dasatinib
by sandy craine (May 4)

Nimbus, thanks for you time, I will pass on your comments.

Sandy

by Nimbus2 (May 1)

Hello Sandy
I have read through the leaflet, and it looks good to me.
At first, Teva dasatinib and Zentiva dasatinib confused me, but they are different generics made by different manufacturers. I

by sandy craine (Apr 29)

Hammersmith hospital are due to roll out another generic: dasatinib Zentiva and have asked for comments for their patient information. So if anyone has any comments it would be very helpful.
Category: Treating CML

Replies: 2

Last updated: 4 May 2023
Rocky Mountain Gal on 16 February 2023

Category: Treating CML

Replies: 12

Last updated: 3 May 2023

What should I do now?
by David Fitz (May 3)

That’s fantastic! It so great when you find a doctor on the same wavelength as you, and you can work with. Different patients need different things from their doctor and I know I wouldn’t chance

by Tbrand (May 3)

Excellent news, so happy for you!

by ColoradoGuy (May 2)

Glad to hear it. I hope this gets you comfortably under 1.0 soon. Even deeper. Why not?

by Rocky Mountain Gal (May 1)

UPDATE: I am so happy to report that after ONE MONTH on Asciminib, my BCR/ABL dropped from 54% to 10%!!!!! My new doc is brilliant. I refer to him as Marcus Welby, MD because he has really taken
Category: Treating CML

Replies: 12

Last updated: 3 May 2023
Angie123456 on 19 April 2022

Category: Uncategorised

Replies: 2

Last updated: 2 May 2023

Cml and ASXL1 mutation
by healthyhabits (May 2)

Hi, I’m dealing with this now - haven’t started treatment yet, just had the biopsy last week and am seeing the oncologist Monday. Any success with meds so far?

by sandy craine (Apr 25)

Hi Angie,
As far as I can understand the ASXL1 mutation in CML can point to resistance to TKis particularly imatinib. see here :https://ashpublications.org/blood/article/134/Supplement_1/4148/424354

by Angie123456 (Apr 19)

Has anyone Dealt with cml and also ASXL1 mutation ??
Category: Uncategorised

Replies: 2

Last updated: 2 May 2023
healthyhabits on 25 April 2023

Category: Blood tests

Replies: 6

Last updated: 1 May 2023

New diagnosis - curious about your stats prior to treatment
by David Fitz (May 1)

PCR fluctuates wildly at higher %s, and FISH is more stable at that point. But PCR comes into its own at the lower levels. There are many approaches to CML testing; in a perfect world where pain was

by Nimbus2 (May 1)

Thank you, David, for this helpful posting. I was guided to consider the PCR at diagnosis to be 100%. I was also told that FISH trumps PCR until FISH reaches zero.
I did not get a PCR until three

by David Fitz (Apr 28)

The numbers at the start (mainly excluding blast %) are often not really so important, but how they respond to treatment is the key thing.
You can have a sky high BCR-Abl at diagnosis, over 300% but

by MartinZA (Apr 28)

Hi healthyhabits
So sorry to hear that you've just been diagnosed and that you've had to join our club. I am sure that all of this must be very frightening and overwhelming right now, if you're
Category: Blood tests

Replies: 6

Last updated: 1 May 2023
Ronniejohn46 on 25 April 2023

Category: Children & young people

Replies: 5

Last updated: 1 May 2023

INCREASED PCR FISH
by Nimbus2 (May 1)

My consultant told me that the weight gain following the early use of the TKI is caused by the body recovering from CML symptoms. I was assured at the time that it was a good thing. Before CML, I

by Ronniejohn46 (Apr 26)

Hello,
Thank you for your reply. It answered many of the questions I have about the failure (probably) of my TKI. I've been on 300MG almost since I was diagnosed in December, 2020. The initial

by scuba (Apr 25)

A mutation is possible, but I think unlikely. Your Gleevec dose is quite low (at 300 mg) and enabled a pool of resistant cells (the clone) to smolder and emerge once the dominant clone was killed.

by Ronniejohn46 (Apr 25)

Thank you for replying. I am scheduled for a BMB next week because my doctor suspects a mutation. I'll know what the results are a couple of weeks later.

I'm curious, though. If Gleevec has
Category: Children & young people

Replies: 5

Last updated: 1 May 2023
MartinZA on 12 April 2023

Category: Treating CML

Replies: 3

Last updated: 28 April 2023

Involuntary TFR update: the dream continues
by MartinZA (Apr 28)

Thank you so much kat and David - you and so many others on this site have been a constant source of support to me and I am so grateful.

by David Fitz (Apr 21)

Terrific news, Martin!
Long may it continue for you.
David.

by kat73 (Apr 21)

Your story is so terrific - you really went from a bad place straight on up! Great news.

by MartinZA (Apr 12)

Hi everyone
This is just an update on my involuntary TFR attempt: in brief, I experienced severe, late-onset side effects from 400mg imatinib 8 years after diagnosis and this necessitated my
Category: Treating CML

Replies: 3

Last updated: 28 April 2023
David787 on 22 April 2023

Category: Drug-drug interactions

Replies: 5

Last updated: 26 April 2023

Shingles Vaccination
by David787 (Apr 26)

Thanks Chrissie,
Had the first dose this morning - looking forward (not) to the booster!

by chrissie (Apr 26)

I had the Shingrix ( double dose) vaccine last autumn and it was fine. No side effects. Just check that your surgery knows you need Shingrix

as it may need to be ordered.
Best to all

by David Fitz (Apr 23)

Yep, Shingrix is not live.
David.

by David787 (Apr 23)

Many thanks David, I have not been informed which vaccine they are offering.
I am guessing that Shingrix is the non-live vaccine….
David
Category: Drug-drug interactions

Replies: 5

Last updated: 26 April 2023