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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
Jclmal on 22 October 2019

Category: Treating CML

Replies: 6

Last updated: 22 October 2019

Gleevec 11+years knee pain
by Jclmal (Oct 22)

Thanks, take magnesium and potassium supplements. Try to remember to stretch. Even with CML busy life. Not quitting, like a little less pain and more energy. Appreciate the help

by Vijay Kumar Verma (Oct 22)

One more thing check ur posture , flat feet etc.mineral deficiency like mag, potasium, calcium.

David, Scuba will guide you much better.

Just a little bit of things from my side.hope you

by Vijay Kumar Verma (Oct 22)

Hi,

It may be due to tight hamstring .Do some strech and yoga.i'm sure ur knee feel happy after 2 or 3 session.if it help plz update.

by Jclmal (Oct 22)

Thanks for reply, I walk a lot at work. It seemed strange that just last few months when I rise up from sitting great pain in the knees. If I drive more than 20 minutes hurts. I played basketball a
Category: Treating CML

Replies: 6

Last updated: 22 October 2019
Ontasigna on 20 October 2019

Category: Treating CML

Replies: 1

Last updated: 21 October 2019

Nilotinib - feeling very exhausted
by David Fitz (Oct 21)

Hi there,
I'm sorry to hear you're not feeling so good. Fatigue can be difficult to manage.
Firstly, this isn't a sign of your CML making a comeback or anything - so I hope you

by Ontasigna (Oct 20)

Hi there,
It's been 9 months since I am on Tasigna 400 mg BD and am on MMR(25-sep).
Since couple of days I am feeling very low and exhausted. Very lathergic n fatigue.
I almost have the same
Category: Treating CML

Replies: 1

Last updated: 21 October 2019
RC Kirk on 16 October 2019

Category: Treating CML

Replies: 6

Last updated: 20 October 2019

Precision dosing using concentration-controlled dosing of TKIs for CML could maximize the clinical benefit and minimize toxicity
by AlastairC (Oct 20)

Hi
This is the link to Prof Flanagan's team's paper on Pubmed.

by mamodei (Oct 19)

Interesting. I had quite a few side effects on the nilotinib, was switched to dasatinib after 2 months, and after 2 months on that my dose was lowered to 50 mg due to side effects. I

by RC Kirk (Oct 19)

Thanks Alastair, I had the plasma level checked once when I was taking 200mg/day. I guess my result was pretty much in line with the dose. Here's the result from that test:

by AlastairC (Oct 18)

I asked a question about therapeutic drug monitoring at last year's patient day, in I think the last Q&A session. Through my work some years earlier in toxicology I was aware of work
Category: Treating CML

Replies: 6

Last updated: 20 October 2019
SamandRich on 16 October 2019

Category: Treating CML

Replies: 3

Last updated: 18 October 2019

Myelostat
by David Fitz (Oct 18)

Sam,
Bosutinib often works for patients who have had issues with other TKIs. The evidence seems to suggest it is somewhat more gentle in terms of side effect profile. Omacetaxine just isn't

by SamandRich (Oct 18)

Hi David

Sorry for the late reply, also nilotab, both not able to tolerate and started getting signs of toxicity.

Thanks for reply

Sam

by David Fitz (Oct 16)

Hi there,
I don’t have any experience with this medication, but others may know it better by it’s other names - Omacetaxine or Synribo, but if I’m reading things right this is an

by SamandRich (Oct 16)

Hi guys, hope you are all doing well. I've just had my medication changed to myelostat and read that it has severe nausea and hair loss as some of the side effects , has anyone else experienced side
Category: Treating CML

Replies: 3

Last updated: 18 October 2019
Nazia on 14 October 2019

Category: Treating CML

Replies: 9

Last updated: 16 October 2019

Currently diagnosed CML
by David Fitz (Oct 16)

Don't just accept the suffering ... if it continues, or gets worse talk to your doctor about trying a different TKI.
In the meantime, experiment with heat (hot water bottles, hot bath) or cold (

by Nazia (Oct 16)

Thanks David,

My pain is constant not as cramps

Its nor too sharp neither mild it is moderate but keeps me restless

I really want to get rid off it because it has disturbed my

by David Fitz (Oct 16)

Hi again Nazia,
Is the pain constant, or does it come and go? When I had sharp pains at the start of my treatment, they would be not too bad and then suddenly for a very short time extremely painful

by David Fitz (Oct 16)

Well, it’s just plain old codeine - a simple opiate. It works well on pain. Addiction problems with opiates happen when taken for a long time, and in the absence of actual pain to deal with. I
Category: Treating CML

Replies: 9

Last updated: 16 October 2019
ian hinley on 17 October 2018

Category: Treating CML

Replies: 65

Last updated: 12 October 2019

Starting TFR in November after 9 years of daily drugs
by ian hinley (Oct 12)

Yes am taking 4 Brazil nuts daily and also supplementing vitamin d. Hopefully just bouncing and next month will be a key result 🤞

by scuba (Oct 12)

Ian - There does seem to be a trend, but it is still below the "resume" threshold.
Are you taking selenium? (200 mcg per day). Recent research suggests selenium interferes with leukemic

by ian hinley (Oct 12)

Results today not so good up to 0.084 from 0.030 last month but still below 0.1 so have couple of months drug free at least ahead. 11 months TFR now, so will make it over a year drug free but still

by scuba (Sep 19)

You are in the noise of the test. You are looking very stable.
Also - we don't know if your levels are now the result of normal bcr-abl formation that happens naturally in normal population. In
Category: Treating CML

Replies: 65

Last updated: 12 October 2019
Cdonohue95 on 10 October 2019

Category: Treating CML

Replies: 2

Last updated: 10 October 2019

5 months with CML
by Cdonohue95 (Oct 10)

Thank you for that and I will deffently talk to my doctor. my question is how much the 50mg seems to be more effective then 70 or 100mg? They keep telling me that I am the youngest patient that they

by scuba (Oct 10)

Ask your doctor to lower your dose further to 50 mg - perhaps lower to 40 mg and monitor bcr-abl progress. There is excellent liklihood you will continue to trend lower (perhaps even faster than you

by Cdonohue95 (Oct 10)

Hello all.
My name is Chris, I was 23 when I was told the news. just a few months before my birthday. I am 24 now and had 240k WBC since then my WBC is floating between 4 to 6k. my latest BCR ABL as
Category: Treating CML

Replies: 2

Last updated: 10 October 2019