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Mike B on 23 June 2023

Category: Blood tests

Replies: 7

Last updated: 27 June 2023

Detected after not being detectable
by healthyhabits (Jun 27)

Thank you Mike, thank you scuba! 100mg is way too much for me. I much prefer these side effects to the ones I experienced on bosutinib (crazy nausea) but would much prefer to be on a lower dose than

by scuba (Jun 26)

Olivia,
You were just diagnosed so you need to be very vigilant. If you show signs of myelosuppression, rashes (mouth sores), dose reduction to 70 mg or even better to 50 mg. is warranted. In some

by Mike B (Jun 26)

My specialist now starts all new CML chronic phase patients at 50mg dose if they begin with Dasatinib. She feels there is now enough evidence and studies to show 50mg is a reasonable place to start

by healthyhabits (Jun 26)

Sorry Mike for this surprising result - sounds like Scuba and your doc (among others) know what they are talking about and you are in the best hands!
@Scuba, @others who have experience with this!
Category: Blood tests

Replies: 7

Last updated: 27 June 2023
argearge on 24 June 2023

Category: Treating CML

Replies: 2

Last updated: 26 June 2023

mmr still after 5 years
by argearge1 (Jun 26)

I will discuss this in september with my hematologist.

by scuba (Jun 24)

Consider drug rotation:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6540367/
From the article:

"Moreover, the simulations give credence to the suggestion that lower drug concentrations

by argearge (Jun 24)

Hi

Since June 2021 in MMR. In March 2023 in mr4.0. but now back in MMR. Bcrabl 0.05IS.
Still on imatinib 600.
What to do next?
Category: Treating CML

Replies: 2

Last updated: 26 June 2023
hogboy on 22 June 2023

Category: Uncategorised

Replies: 2

Last updated: 24 June 2023

Newly diagnosed
by Crfharris (Jun 24)

Not sure how close you are to North Carolina but Duke has an outstanding department.

by healthyhabits (Jun 23)

Hi, so sorry to hear! You're in good company on this site. I don't live in VA, but I know UVA has a great reputation. I would call their leukemia service and ask for a referral for a CML specialist

by hogboy (Jun 22)

Located in Va and need a doctor that specializes in CML

Can travel but prefer Va, Nc or Md
Category: Uncategorised

Replies: 2

Last updated: 24 June 2023
Sd on 16 May 2023

Category: Side effects

Replies: 18

Last updated: 22 June 2023

Imatinib and tetanic cramps
by Nimbus2 (Jun 22)

Hello David.
This is mildly off-topic, but I started experiencing severe hand problems in 2006 when I was 50. My profession required a heavy amount of typing, and I studied for a law degree

by scuba (Jun 16)

Indeed!

by David Fitz (Jun 16)

These small molecule medications we take are a bit of an enigma. Nimbus2, your cramps were cured and that is fantastic. I can’t hold a pen for more than a couple of lines of writing before my

by SS86 (Jun 16)

THANK YOU, Scuba. I dont have words to express how much hope you add to our lives.
Thanks
Category: Side effects

Replies: 18

Last updated: 22 June 2023
scuba on 17 June 2023

Category: Uncategorised

Replies: 0

Last updated: 17 June 2023

Risk of Covid "worse" with more jabs ...
by scuba (Jun 17)

https://www.medrxiv.org/content/10.1101/2023.06.09.23290893v1.full.pdf
Risk of Coronavirus Disease 2019 (COVID-19) among Those Up-to-Date and Not

Up-to-Date on COVID-19 Vaccination
Summary:
Category: Uncategorised

Replies: 0

Last updated: 17 June 2023
Karthikeyan on 18 November 2021

Category: Uncategorised

Replies: 10

Last updated: 16 June 2023

About generics in UK
by Nimbus2 (Jun 16)

Thank you, Richard. Having suffered considerable adverse effects from generic imatinib, I dreaded generic dasatinib. However, Teva dasatinib has given me no issues whatsoever.

by Richard42 (Jun 15)

Apologies for somewhat belated response - am prompted to reply by discussions on another forum about whether generic dasatinib should or should not be available in the UK for CML. My understanding

by David Fitz (Mar 22)

Hi,
Richard will know more about this than me, but you can see here that the PIL (Patient Information Leaflet) is very clear that Teva dasatinib is indicated for CML.
https://www.medicines.org.uk/

by labros (Mar 17)

Hello Richard,
Can you please share more details. I live in the UK, use the SPRYCEL the last 3 years and I was offered the TEVA this time.
Thanks in advance.
regards

Lampros
Category: Uncategorised

Replies: 10

Last updated: 16 June 2023
Janet Treble on 8 June 2023

Category: Uncategorised

Replies: 5

Last updated: 15 June 2023

MMR at last!
by Janet Treble (Jun 15)

Thanks Alex, so long as those numbers continue to go down I will be happy 😊

by Janet Treble (Jun 15)

Thanks for replying, I'm so glad I'm not the only one who's taken time to get here!

by ColoradoGuy (Jun 14)

Took me about about 3 years and required a switch from Dasatinib to Nilotinib. Currently 0.008 and creeping up on 6 years.

by alexmcpee (Jun 13)

Yay awesome stuff.
It took me exactly 2.5 years to hit MMR. @5 years in am 0.014% nigh on MR4. It’s slow going but the numbers continue down and as you’ll see many many times on here the trend down
Category: Uncategorised

Replies: 5

Last updated: 15 June 2023
Merlinlewis on 11 June 2023

Category: Treating CML

Replies: 3

Last updated: 14 June 2023

Doctor appointment tomorrow / Switching Medication Nilotinib to Imatinib ?
by alexmcpee (Jun 14)

I have a CML friend who went from Dasatinib to Imatinib so yeah you can go from a gen 2 to a gen 1.
If I were you I’d push for Imatinib for several reasons. 1 being it’s the drug we know the most

by Felix (Jun 12)

Hi, I would go for 20 mg Dasatinib not 50 too toxic rather than Imatinib .Shouldn’t get problems on 20 mg ,a few days of mild headaches then you should feel fine ,where as with Imatinib fatigue for

by Buzzm1 (Jun 12)

Merlinlewis, with your BCR-ABL percentage at 0.02 it shouldn't take a very high dosage of TKI to control your remaining CML. You might want to try to convince your oncologist/hematologist to put

by Merlinlewis (Jun 11)

Hey guys!
Maybe some of you remember me from my post in which i thought i will never reach MMR!

There are some good and some bad news :D!

I reached MMR after around 27 months on
Category: Treating CML

Replies: 3

Last updated: 14 June 2023
Jacqueline Allmark on 14 June 2023

Category: Side effects

Replies: 0

Last updated: 14 June 2023

Laser removal of permanent eyebrows
by Jacqueline Allmark (Jun 14)

I have CML BCR/ABL 0.04 diagnosed 2019.My imatinib dose has just been reduced to 200mg because of dry eyes It was 400mg before.

I am due to have laser removal of permanent make up to eyebrows
Category: Side effects

Replies: 0

Last updated: 14 June 2023
Nimbus2 on 12 June 2023

Category: Uncategorised

Replies: 2

Last updated: 14 June 2023

Silvio Berlusconi CML
by Nimbus2 (Jun 14)

Thank you, Alastair, for finding a good authority. I can understand why the press incorrectly identifies chronic myelomonocyte leukaemia as CML.

by AlastairC (Jun 12)

The BBC think you're right.
"The former Italian leader had been suffering from a rare form of blood cancer, chronic myelomonocyte leukaemia, doctors at San Raffaele revealed in April."

by Nimbus2 (Jun 12)

I wonder how Silvio Berlusconi came to die of leukaemia. His death appears to be from a lung infection linked to CML.
P.S. I think that he may have had CMML, which is incorrectly abbreviated to CML
Category: Uncategorised

Replies: 2

Last updated: 14 June 2023
Kamil on 13 June 2023

Category: Blood tests

Replies: 0

Last updated: 13 June 2023

Elevated WBC , PCR still dropping
by Kamil (Jun 13)

Hi All,

I hope everyone is well,

We just received our 12 month bcr-abl results alongside with the rest of the blood results.
The BCR-ABL (is) is trending downwards from 80% at diagnosis
Category: Blood tests

Replies: 0

Last updated: 13 June 2023
healthyhabits on 22 May 2023

Category: Side effects

Replies: 12

Last updated: 10 June 2023

Second Week on Dasatinib
by scuba (Jun 10)

CML will not "get you", you caught it in time. Once you achieve cytogenetic remission (FISH = zero; PCR < 1.0%), progression free survival is over 95%. And the 5% who don't make it die from

by healthyhabits (Jun 9)

Scuba! What a nice reply. I have read many of your posts, I am so in awe of and grateful for your comments. To give back to this community is immensely helpful. This was very heartening to hear and

by scuba (Jun 9)

Olivia,
I remember like it was yesterday when I was diagnosed with advanced CML, borderline blast crisis in May 2010. My wife cried at hearing the news and I sat there with the hematologist and

by healthyhabits (Jun 9)

Hi Martin! You are, what we call in my culture, a mensch. I really appreciate your thoughtful and wise responses.
I started on 400mg bosutinib and I will admit, I was immediately unwilling to take
Category: Side effects

Replies: 12

Last updated: 10 June 2023
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