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Nshah on 16 February 2020

Category: Treating CML

Replies: 6

Last updated: 18 February 2020

Missed imatinib doses
by Nshah (Feb 18)

Thanks dear 😊

by Philiptibbs (Feb 18)

Your fine. I miss a dose of my Sprycel once a week when I have some Beers on the weekend and my levels are 0.0312 so you should be fine .

by Nshah (Feb 18)

Wow that’s great, do you still take medicine

by dftitus (Feb 18)

My CML was caught very early. My first PCR was 0.1264. My second PCR (3 months later), showed a 3-log reduction. It was undetectable at 6 months and has stayed that way ever since.
Category: Treating CML

Replies: 6

Last updated: 18 February 2020
hannibellemo on 17 February 2020

Category: Treating CML

Replies: 2

Last updated: 18 February 2020

6 months of alternate day treatment with 20 mg. Sprycel
by Philiptibbs (Feb 18)

I'm on 70mg Sprycel every day and I was just at 0.0312 and my Doc said if the next test is same or lower I can drop to 50mg. Thing is I have inflamation in all my joints. My muscles ache and my

by kat73 (Feb 18)

My thoughts on the inflammatory tissue result: I can't help but wonder if this doesn't fall into the category of weird stuff that TKI's do that screw up tests and things that make

by hannibellemo (Feb 17)

I just got the results from my recent (2/13/2020) PCR. In November, after 3 months of alternate day therapy in which my results went from CMR (on 20 mg every day) to 0.0032, my most recent result is
Category: Treating CML

Replies: 2

Last updated: 18 February 2020
Batman0424 on 4 February 2020

Category: Treating CML

Replies: 8

Last updated: 16 February 2020

Confused - treatment change
by Batman0424 (Feb 16)

So we saw (and are switching to) Dr Mauro last week and he agreed that my wife should continue on Dasatinib @ 50mg. We will do another PCR test in 6 weeks, which will be 2 continuous months on

by Batman0424 (Feb 4)

Thank you Sandy for clarifying / confirming my assessment.

I do not know why a PCR test was ordered when my wife was only treated for a total of 24 days spread over 2 months

by sandy craine (Feb 4)

Hi,
If I understand your situation and concerns correctly, I suggest you take a look at our PCR booklet which may help you when trying to understand your wife's test results.
At diagnosis

by Batman0424 (Feb 4)

Thank you, Scuba - your response was very helpful and reassuring.
Currently, my wife seems to be tolerating 50mg of dasatinib relatively well. Her panels look great at the moment on 50;
Category: Treating CML

Replies: 8

Last updated: 16 February 2020
stefanolucas on 13 February 2020

Category: Treating CML

Replies: 2

Last updated: 13 February 2020

Question , please advice
by stefanolucas (Feb 13)

Yes , at the beginning she had began her treatment with Imatinib but she lowed to 20% not in a fast way how it shoulded be doc says , after she reached 20% from this point Imatinib didn’

by ColoradoGuy (Feb 13)

A little background regarding the resistance to Imatinib would be helpful. Did her numbers climb in two consecutive tests significantly? Was mutation testing performed?
I think that the

by stefanolucas (Feb 13)

Hello ,
As a background story which are in my other threads , about my sister ( 21yrs) who was diagnosed in June,2018 with CML and had a resistance to imatinib after we switched to
Category: Treating CML

Replies: 2

Last updated: 13 February 2020
johnw1001 on 10 February 2020

Category: Treating CML

Replies: 0

Last updated: 10 February 2020

What happened to Bafetinib?
by johnw1001 (Feb 10)

Bafetinib (N-187) which is an inhibitor of BCr-Abl was developed as an experimental drug in Japan and then licensed for development by Cayman Chemical in USA after being given orphan drug status in
Category: Treating CML

Replies: 0

Last updated: 10 February 2020
Sonia0609 on 6 January 2020

Category: Treating CML

Replies: 9

Last updated: 9 January 2020

Curcumin
by scuba (Jan 9)

I take 5,000 IU's vitamin D3 one day; 10,000 IU's the next day in winter.
In spring I switch over to just 5,000 IU's every day until fall.
The above is calibrated by vitamin D tests

by JPD (Jan 9)

I know you've answered this before - but what levels of curicumin (and D3 for that matter) are you currently taking? @scuba

by alexmcpee (Jan 7)

Thank you Scuba!
I bought some Curcumin with pepper from Amazon and it has a heart warning on the label and because Tasigna also has a heart warning I was reluctant to take it just in case it caused

by scuba (Jan 7)

I continue to take C3 complex version of Curcumin.
Category: Treating CML

Replies: 9

Last updated: 9 January 2020
Ontasigna on 8 January 2020

Category: Treating CML

Replies: 3

Last updated: 9 January 2020

Nilotnib : Dose reduction
by Ontasigna (Jan 9)

Thanks David. Last 9 months I am in mr4

by VioS (Jan 8)

Helo,
after 1 year and 10 months of tasigna (on 12 december) because of side effects like constipation, prostatitis and tinitus, i reduce my dose to in half, and after a week i stayed 3 days free of

by David Fitz (Jan 8)

Hi,
I wouldn't be concerned about slightly raised levels of white cells. Our bodies produce more of these when we need to fight infections, and around this time of year (in the northern

by Ontasigna (Jan 8)

Hi all,
It's been an year I started off with Nilotnib 400mg BD. My PCr as of 26th Dec 19 - 0.00555
I have appointment with my Doc tom. Can I ask for dose reduction?
My lmyphocytes and esinophils are
Category: Treating CML

Replies: 3

Last updated: 9 January 2020
Mike B on 7 January 2020

Category: Treating CML

Replies: 2

Last updated: 7 January 2020

Stay course or try Sprycel dose reduction
by Mike B (Jan 7)

Thank you Kat!
My goal is to hopefully reduce future side effects such as the pleural effusion. I am not so concerned about TFR. If I get there, I get there, but that has never been my main goal.
We

by kat73 (Jan 7)

There is some thinking that less is more with Sprycel. You are at a very safe place after not an unusual span of time getting there. There are studies showing that 50 mg of Sprycel - as

by Mike B (Jan 7)

Could use some reassurance and thoughts.
Diagnosed November 2016. Currently on Sprycel 100mg. Stalled out before on Imatinib and Bosutinib gave liver problems.
MMR Finally April 2019.
April 2019 - .
Category: Treating CML

Replies: 2

Last updated: 7 January 2020
Justine on 27 December 2019

Category: Treating CML

Replies: 3

Last updated: 1 January 2020

Time for a different TKI or stay the course?
by Justine (Jan 1)

Thank you both for your replies. Happy new year!

by David Fitz (Dec 30)

You’re in MMR - an optimal response. You’re doing just fine!
TFR is not a realistic goal for everyone.
If you really want the fabled “undetected” (7 years later, I’ve

by alexmcpee (Dec 27)

I think you are doing fine. You may never reach undetected not everyone does. The guidelines for mutation testing or a switch of drugs is x2 consecutive upticks. But I bet if you test again you

by Justine (Dec 27)

Hello friends, I was diagnosed April 2017. It took 21 months for me to achieve MMR on 400 mg generic imatinib. I'm still taking IM.
At my last checkup this week at 33 months out, I am still not
Category: Treating CML

Replies: 3

Last updated: 1 January 2020
janita on 25 December 2019

Category: Treating CML

Replies: 4

Last updated: 26 December 2019

Newly diagnosed
by Buzzm1 (Dec 26)

Janita, allow me to re-ask part of David's question: What dosage of Nilotinib are you on?
You may be able to reduce your dosage to help reduce the side-effects you are experiencing

by alexmcpee (Dec 26)

Hi Janita
Congrats to you both. A day let alone week prob will make little difference as my doc says. But wouldn’t take the risk regularly even once a month.
I am too on Nilotinib and have

by janita (Dec 25)

Hi
mom in Tasmania Australia I am taking Nilotinib twice a day only been on them for 3 weeks and my levels have dropped dramatically already (yayyy) my dr says I have to give my body time to

by David Fitz (Dec 25)

Hi Janita,
Not taking your meds for one single day won’t cause any issues - but if missed more than one time a month (perhaps less) then it can cause problems. But if you are having side
Category: Treating CML

Replies: 4

Last updated: 26 December 2019
MartinZA on 19 December 2019

Category: Treating CML

Replies: 6

Last updated: 20 December 2019

80% reduction in BCR-Abl
by scuba (Dec 20)

I do - some weights, mostly cardio (HIIT).
It's a myth fasting erodes muscle mass. During a fast, the body requires about 4 grams of glucose a day to maintain a bare minimum of circulating

by Mick E (Dec 20)

Scuba
do you do any physical training at all? I’m interested to how fasting can affect the bodies ability to retain muscle mass.

regards
Mick Ellison

by scuba (Dec 20)

The first fast is the toughest because your body likely never had to "manufacture" ketone making enzymes before. So when you deprive your body of carbs (food in general), the metabolic

by MartinZA (Dec 20)

Scuba, thanks so much for this tip!
I'm going to try it this weekend and let you know what happens. I have bought the ketone strips but didn't bother using them because I couldn't reach the 48
Category: Treating CML

Replies: 6

Last updated: 20 December 2019
AliceN on 19 December 2019

Category: Treating CML

Replies: 3

Last updated: 20 December 2019

Calcium deficiency
by scuba (Dec 20)

HI Alice,
All TKI's affect our electrolytes - Na, K, Mg and Ca. Na and K are very easy to obtain through diet, sometimes too much and are not usually a problem - but Mg is more difficult to

by AliceN (Dec 20)

Hello and thank you,
My vitamin D is ok, it has been on the low side from time to time but mostly ok. I think you are correct in that vitamin D is an important contributor to Calcium levels.

by RC Kirk (Dec 20)

Hi Alice,
I looked back at my test results and calcium levels seem to have been stable for me.
Do you know what your vitamin D level is? If it's low, I've heard it can cause problems

by AliceN (Dec 19)

I was diagnosed in 2017 and been on imatinib since then. I'm tolerating the imatinib pretty well but my gp is concerned about low calcium levels. Does anyone have any experience or problems with
Category: Treating CML

Replies: 3

Last updated: 20 December 2019
DKurup on 29 July 2019

Category: Treating CML

Replies: 1

Last updated: 17 December 2019

No more Sandoz, Others cause side effects, Whats next?
by Julia.K (Dec 17)

Hi there, I am in the same situation, after discontinuation of Gleevec in 2014, I have been taking various generics, now I've lost MMR, no way to get Sandoz in my country though. What do you

by DKurup (Jul 29)

Hi,
Quick background: I had CML since May 2015, now, 39 yrs, was on Glivec 400 initially, gained MMR within 4 months, reduced side effects after first 6 months.
After first 2+ yrs on Gleevec, NHS
Category: Treating CML

Replies: 1

Last updated: 17 December 2019
StuartK on 12 December 2019

Category: Treating CML

Replies: 4

Last updated: 13 December 2019

Just started Imatinib
by StuartK (Dec 13)

Hi Alex
Mine is more of a rash, not raised or dot like and it's pretty much everywhere on my torso legs and now arms. More alike to a heat rash without the heat, however so far it's not

by alexmcpee (Dec 12)

Hi Stuart,
I’ve been on treatment for 20months and I have small red raised pimples at the hair follicle on my upper arms, upper legs and some other parts. It’s Folliculitis and you can

by StuartK (Dec 12)

Hi David
Thanks for replying. I think it's just a reaction rash and should fade, its mentioned in my imatinib fact sheet. It doesn't look like any of the pictures I looked at, even for mild

by David Fitz (Dec 12)

Hey Stuart, there are no frauds when it comes to CML. If you have it, I'm afraid to tell you that you are not a fraud! You really have CML, you really have cancer and that's the end of that
Category: Treating CML

Replies: 4

Last updated: 13 December 2019
anonimouse on 14 February 2018

Category: Treating CML

Replies: 41

Last updated: 24 November 2019

Has anybody been able to reduce their dosage of Sprycel?
by kali (Nov 24)

Hello to all,
in response to this thread, I have been on 20 mgm of Sprycel as well for several months and still undetectable!! No side effects and all blood work is normal.
My onc says I am

by Sunny (Nov 24)

Thank you Scuba. You are very knowledgeable, and your responses are always illuminating and very informative.
Especially where I am concerned as I am on Dasatinib myself.
Too bad I can't follow

by anonimouse (Nov 23)

It's been nearly a year since I originally posted and also, stopped taking Sprycel (after a tapering off period of months) after this post at the end of December 2018. I am happy to say

by anonimouse (Nov 23)

It's been nearly a year since I originally posted and also, stopped taking Sprycel (after a tapering off period of months) after this post at the end of December 2018. I am happy to say
Category: Treating CML

Replies: 41

Last updated: 24 November 2019
Sharon7 on 19 November 2019

Category: Treating CML

Replies: 9

Last updated: 22 November 2019

Frequency of blood tests for newly diagnosed
by Sharon7 (Nov 22)

Hi there,
Thanks so much for the Tasigna info and references. I had a gut feeling that leaving his blood test for a month was too long and I decided to just book him in with our GP to get bloods

by Sharon7 (Nov 22)

Hi Kat,
I wouldn't have thought to ask about how low the specialist would be prepared to go before he stops meds. As you said, that will save us worrying even more if his numbers continue to fall

by RC Kirk (Nov 21)

Hi Sharon, Here's a quote from the prescribing information for Tasigna: https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=2ahU...
5 WARNINGS

by kat73 (Nov 21)

That's good news, Sharon. Be prepared for the numbers to go even lower for awhile. A good thing to do in order to forestall anxiety is to ask your onc what the parameters of safety
Category: Treating CML

Replies: 9

Last updated: 22 November 2019
MarkP66 on 20 November 2019

Category: Treating CML

Replies: 10

Last updated: 20 November 2019

Advice on reaching CMR
by MarkP66 (Nov 20)

Many thanks Scuba. I really appreciate it for taking the time to explain the details.
Hopefully I will have the latest results by Friday and will report on the PCR results.
Have a great

by scuba (Nov 20)

When you have your labs in front of you, report what it says regarding "bcr-abl" (PCR) and/or FISH. Your CBC blood counts look fine (which is why you are not "sick").
During

by MarkP66 (Nov 20)

Hi
I’m not local to home at the moment but from memory the PCR was 38%. I am not sure if the FISH test ? I had a BCR Abl test from bloods at the start of my diagnosis which seems to take

by scuba (Nov 20)

Hi Mark,
What are your lab results in terms of PCR and FISH?
Reporting your actual lab results here can better inform us on what you should expect.
FISH is reported as a percentage of cells under
Category: Treating CML

Replies: 10

Last updated: 20 November 2019
Simon Allchin on 18 November 2019

Category: Treating CML

Replies: 2

Last updated: 19 November 2019

What are the highs and lows of a stem cell transplant?
by Simon Allchin (Nov 19)

Thanks, will read the link this evening. Haven’t given up on TKIs yet, still part of an Asciminib trial and will also try Basutinib if the former is too unkind. Already been pulsing for two

by scuba (Nov 19)

No sugar coating:
https://www.nature.com/articles/s41409-019-0624-z
"Death after hematopoietic stem cell transplantation: changes over calendar year time, infections and associated factors

by Simon Allchin (Nov 18)

Looking increasingly likely none of the TKIs are going to be kind enough to my good blood cells to allow me to continue treatment with them so was just wanting to hear the experiences of anyone who
Category: Treating CML

Replies: 2

Last updated: 19 November 2019
r06ue1 on 15 November 2019

Category: Treating CML

Replies: 2

Last updated: 15 November 2019

Researchers find potential new treatment for chronic myeloid leukemia
by Vikram (Nov 15)

Amazing......
Finger cross.....
But.....
Mice trial and human trial different....
Miristen 126 cure Cml in mice..... Reserch continue......
No update and news...... About miristen 126 ..... Last

by Mick E (Nov 15)

That is an amazing discovery! 😁
lets hope that it works as successfully in humans and that it will also help improve the understanding of other disease characteristics!🤞

by r06ue1 (Nov 15)

Sounds like a cure to me.

When they combined the antibody and TKI treatments, the CML cells could not grow at all, Chute added.
“The combination of this antibody with
Category: Treating CML

Replies: 2

Last updated: 15 November 2019
Mick E on 17 October 2019

Category: Treating CML

Replies: 23

Last updated: 29 October 2019

Nilotinib side effects
by Mick E (Oct 29)

I’m not sure what the PCR figure is now as it has risen over the last few months due to inconsistency of treatment. He mentioned it was at a stage where mutations can occur.
Got to agree

by cmljax (Oct 29)

When I was taking nilotinib twice per day, I took it at 0830 and 2030. I only eat twice a day at around 1200 and 1800, so that was outside the forbidden eating windows, so I was OK there.

by Mick E (Oct 29)

Thanks for the reply!
pleased to hear you have managed to get side effects to a tolerable level!!
very useful to know you are still training as exercise has always been my main life

by David Fitz (Oct 29)

I can also really recommend Carmellose Sodium drops. They are ever slo slightly viscous, so stay in your eyes better than something very watery and really lubricate your eyes.
I bought these
Category: Treating CML

Replies: 23

Last updated: 29 October 2019