CML Horizons Conference Report: Lisbon Portugal May 17th - 19th 2019

Early results of lower dose dasatinib (50 mg daily) as frontline therapy

TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

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Lorilyn316 on 19 June 2019

Category: Uncategorised

Replies: 0

Last updated: 19 June 2019

Blast phase Treatment
by Lorilyn316 (Jun 19)

My husband has blast phase CML and started Sprycel to put him in remission. His doctor said he would need to do a Stem Cell Transplant 8 to 10 months from now because the Sprycel will stop working.
Category: Uncategorised

Replies: 0

Last updated: 19 June 2019
Sarah63 on 16 April 2019

Category: About CML

Replies: 7

Last updated: 19 June 2019

How common is this...(?)
by Sarah63 (Jun 19)

The link above will still work. You have to go there and click another internal link.
Prabhu and Paulson are now applying with FDA for human trials on Sodium Selenite, after finding similar

by Sarah63 (Apr 21)

Scuba,
They include 1) Misoprostol; 2) EPA (only) fish oil; 3) Sodium Selenite. All have cured CML in mice by killing stem cells. The theory is that CML people have dysfunction in the

by scuba (Apr 20)

Sarah ... what are the substances?
"Since February I have added substances known to obliterate leukemia stem cells in mice"

by David Fitz (Apr 20)

Fab! My doctor has been willing, but not as aggressive as I have wanted to reduce my dose. I’m down to 20 now and to be honest my pushing, and her resisting sort of met in the middle at the
Category: About CML

Replies: 7

Last updated: 19 June 2019
r06ue1 on 18 June 2019

Category: Treating CML

Replies: 2

Last updated: 19 June 2019

Non-Detectable (0.000%) and potential cure for CML
by Sarah63 (Jun 19)

I had the same experience on Misoprostol!
After developing mutation Phe311Leu, discovered December 2018, I had to change to something other than Gleevec. My PCR in Nov. 2018 was 32% (IS).

by scuba (Jun 18)

Ro6ue1 - Fantastic!
I applaud your tenacity and experimentation. I was not familiar with Misoprostol and now I am.
Although what you did is not "statistical" in a clinical trial sense - I

by r06ue1 (Jun 18)

Received my test results yesterday evening and finally hit ND (0.000%) after 3 years and 9 months.
Results of all tests since diagnosis:

I want to highlight two area in the above
Category: Treating CML

Replies: 2

Last updated: 19 June 2019
Gian P on 19 June 2019

Category: Side effects

Replies: 0

Last updated: 19 June 2019

Sprycel and brown urine?
by Gian P (Jun 19)

Does anyone have had a brown urine that gives a burning sensation afterwards?
i am taking 50 mg Sprycel and my platelets are at 55 right now, i don’t think this drug works for me, BCR Abl 8%
Category: Side effects

Replies: 0

Last updated: 19 June 2019
israel on 17 June 2019

Category: Treating CML

Replies: 6

Last updated: 19 June 2019

Looking to reduce dosage of Imatinib 600mg to 400mg
by israel (Jun 19)

Hi Poppert!
I didn’t have any PCR tests in between February 2015 and February 2016. My national healthcare system isn’t able to provide the optimal PCR test frequency, so big gaps

by israel (Jun 19)

Hi Scuba!
Thank you for the information and the words of encouragement.
I have been researching about possibilities to reduce my Imatinib dose for some time. This forum has been very, very helpful

by israel (Jun 19)

Hey Lucas!
Yes, I’m Brazilian! I live in Florianópolis, where I have been under treatment since my CML diagnosis.
I know of Abrale and think this organisation does an amazing job of raising

by Lucas (Jun 18)

Hi, Israel! Are you brazilian? If you are, i have some thoughts about your treatment. First of all, you're doing very well. Second: there aren't many good labs for pcr tests in brazil. I
Category: Treating CML

Replies: 6

Last updated: 19 June 2019
kali on 14 June 2019

Category: Uncategorised

Replies: 2

Last updated: 17 June 2019

Sprycel Reduction Update
by Karinne (Jun 17)

This is such a wonderful news. Celebrate.

by Chuckster (Jun 17)

Great News!!!
Very happy for you!!!!!

by kali (Jun 14)

PCR today was 0.0000!
Soooo happy 😊
Category: Uncategorised

Replies: 2

Last updated: 17 June 2019
Karinne on 13 June 2019

Category: Uncategorised

Replies: 7

Last updated: 17 June 2019

Update on my pcr
by chrissie (Jun 17)

Brilliant news. Grapefruit maybe? (I think i am obsessed with the stuff as it's been soooo long without one).
Seriously, well done,
Best
Chrissie

by Chuckster (Jun 16)

Congrats!
Great news for you!!!

by VickyK. (Jun 14)

Congratulations!!!

by kali (Jun 14)

Awesome news!!!
Category: Uncategorised

Replies: 7

Last updated: 17 June 2019
DJ on 14 June 2019

Category: Side effects

Replies: 9

Last updated: 17 June 2019

Is Sprycel bad for side effects?
by alliswell (Jun 17)

these are the treatment options we have at this point i guess , but i dont think you can say lets try this before taking other health problems in account.
https://cmlsupport.org.uk/facts/

by alliswell (Jun 17)

double post couldnt delete this one.

by DJ (Jun 17)

Hi all,
Thank you for your replies.
She is having side effects but she's going to take it and watch it a little longer. She says she feels sick on it though.
Oh, she just had a

by alliswell (Jun 16)

one month diarreah + water pill ...
if they hadn't check it yet , i think they really check her sodium and electrolytes levels.
it seem like drug-induced diarreah but they should perform a
Category: Side effects

Replies: 9

Last updated: 17 June 2019
jmonzione on 13 June 2019

Category: Side effects

Replies: 2

Last updated: 16 June 2019

Sprycel and pain/discomfort/fatigue
by Chuckster (Jun 16)

Hope you can get down to at least 50 MG !
CML confirmed Feb 2018.
I lasted not even 3 weeks on the 100 mg with side effects of real bad shortness of breath, fatigue, and loss of appetite.
Reduced

by kali (Jun 14)

Hopefully you can reduce to 50 mgm when you ask. I know when I reduced from 100 mgm my fatigue was way better!

by jmonzione (Jun 13)

Does anyone have any advice about management of pain and general feeling of fatigue while taking sprycel. I take 100mg a day and have an appointment with my doctor in late July where I plan to
Category: Side effects

Replies: 2

Last updated: 16 June 2019
charron on 13 June 2019

Category: Treating CML

Replies: 3

Last updated: 15 June 2019

New parent with a daughter diagnosed with CML
by David Fitz (Jun 15)

Hi Charron,
It’s really important to remember that patients who are doing really well, and suffer no / little side effects (and there are a lot of them!) don’t tend to post to online

by charron (Jun 14)

Thank you will keep you posted

by VickyK. (Jun 13)

Dear Charron,

I hope all the best for your daughter!I know this feeling but trust me everything will get better!I am 31 years old diagnosed 9 months ago with CML. I started with nilotinib

by charron (Jun 13)

Hi All,
My daughter 24 was diagnosed with CML last 2 weeks ago not sick just went for a blood test for women problems. She is in Australia and is an Australian. We are still waiting on
Category: Treating CML

Replies: 3

Last updated: 15 June 2019
Mick E on 15 June 2019

Category: Uncategorised

Replies: 2

Last updated: 15 June 2019

Dasatinib (sprycel)
by Mick E (Jun 15)

Thanks for the reply 🙂
the side effects do worry me as although the other treatments have worked they have been extremely difficult to live with.

by Mike B (Jun 15)

I also had to stop Bosutinib due to liver values and was switched to Dasatinb. 100mg is standard dosage. There is some good evidence that lower doses such as 50mg might be more appropriate. The

by Mick E (Jun 15)

I have had Bosutinib stopped due to liver problems. I now have to go onto Dasatinib, what’s the normal dosage to be prescribed? Do you start low and go higher or the reverse to
Category: Uncategorised

Replies: 2

Last updated: 15 June 2019
Rick B on 14 June 2019

Category: Uncategorised

Replies: 2

Last updated: 14 June 2019

Question about TFR
by Rick B (Jun 14)

Very helpful and hopeful! Thank you!

by AlastairC (Jun 14)

Rick, I am 7 months in to trying TFR. I was in MMR on 400mg imatinib for 10.5 years, then a year on 200mg, and stopped in early November last year. Still MMR so far. The view of the UK CML

by Rick B (Jun 14)

Dx on June 14, 2018 with 12.66% bcr-abl. Started treatment on July 5, 2018 f 400 mg Imatinib daily. Last blood draw was June 3rd. Here is report from my hematologist, Winship
Category: Uncategorised

Replies: 2

Last updated: 14 June 2019
Diane CW on 13 June 2019

Category: Side effects

Replies: 0

Last updated: 13 June 2019

Bosutinib and BCR-ABL Issues
by Diane CW (Jun 13)

I am currently on 400mg Bosutinib. After diagnosis I started taking Nilotinib but my onc decided to switch due to low platelet count. So began with 100mg Bosutinib but my bcr-abl results were
Category: Side effects

Replies: 0

Last updated: 13 June 2019
AlastairC on 6 October 2017

Category: Treating CML

Replies: 61

Last updated: 12 June 2019

Imatinib Dose Reduction Starts
by AlastairC (Jun 12)

Hi Chrissie, I was worried about my 0.03 a couple of months ago but have gone back to 0.01 this time, so hope you go the same way.
Best
Alastair

by chrissie (Jun 12)

Thanks, Scuba. Hope you are doing OK
Best
Chrissie

by scuba (Jun 12)

Chrissie - consider switching drugs if you have to go back. Low dose dasatinib is a good alternative (i.e. < 40 mg).
Data suggests that rotating TKI drugs may do more to increase TFR success than

by chrissie (Jun 12)

Well I just got my results from May 20th and yep I am now on 0.03% so still in MMR but no longer MR4. We have decided to hang in there on 200mgs and see what happens in the next few months - but I
Category: Treating CML

Replies: 61

Last updated: 12 June 2019
Trevorp93 on 3 June 2019

Category: Children & young people

Replies: 6

Last updated: 12 June 2019

Need advice on pcr results
by Stuart Johnston (Jun 12)

regarding PCR results
the Best bit of guidance I was given by my Hematologist is that the PCR blood test is like playing darts you either get bulls eye or you miss the board altogether. Plus

by scuba (Jun 4)

David - in fact patients achieving CCyR, complete cytogenetic remission (PCR ~ 1.0 %) can expect a normal lifespan.
MMR is truly a very deep response at the molecular level.
I agree with you,

by David Fitz (Jun 4)

I've never been undetectable. It's not necessarily a realistic goal. As PCR technology improves, lower and lower amounts of residual disease may be found and those who were "

by scuba (Jun 4)

Trevor,
As crazy as it sounds - you are likely to have a faster result downward by LOWERING your dose from 100 mg currently to 70 mg or even 50 mg. I'll explain.
Dasatinib (sprycel) is a
Category: Children & young people

Replies: 6

Last updated: 12 June 2019
Stuart Johnston on 12 June 2019

Category: Side effects

Replies: 0

Last updated: 12 June 2019

Generic Imatinib side effects (WOCKHARDT BIO AG)
by Stuart Johnston (Jun 12)

Hi all
I hope you are keeping well.
My question is has anybody else had a side effect to the generic imatinib?
I was put onto WOCKHARDT BIO AG imatinib 400mg and after 15 tablets was unable to
Category: Side effects

Replies: 0

Last updated: 12 June 2019
Mick E on 10 June 2019

Category: Uncategorised

Replies: 2

Last updated: 12 June 2019

Yeast infection in gut
by Mick E (Jun 12)

I was asking the question as I’m interested to how the drugs affect the digestive system and if they are harmful to the bacteria that keeps yeast infection proliferating.
I personally

by EvaH (Jun 11)

Two things you could try is a course of B12 (injections maybe?)
Or if you really think yeast is the issue, its likely that it predates the TKIs. Most folk on "western" diets have too much

by Mick E (Jun 10)

Have any of you had a yeast infection in your gut as a consequence of taking TKI’s?
Im trying to understand what can be causing constant fatigue and lethargy even though my bloods don’t
Category: Uncategorised

Replies: 2

Last updated: 12 June 2019
Poppert on 21 April 2019

Category: Side effects

Replies: 3

Last updated: 11 June 2019

Imatinib effect on vision?
by EvaH (Jun 11)

hi again
Very similar story and stats to me , i did not get eye problems till 6 months after diagnosis.
It likely isnt the same as what i had but if you are experiencing floaters or a

by Poppert (Apr 22)

15 months on Imatinib (whereof last 3 on 600 mg). WBC 323 at diagnosis on the scale where 3.5-8.8 is normal. I’m 45 and I already have had bifocals for 2-3 years.
Eyesight was ok at diagnosis

by EvaH (Apr 22)

How long have you been on imatanib?
How high was your white cell count at diagnosis?
What age are you?

Generally short sightedness will not get worse as you age, but you can need bifocals.

by Poppert (Apr 21)

For some time now I have been feeling my vision has become worse. Especially after I moved up to 600 mg Imatinib. I went to my optician last week and she was quite surprised of the change. I have
Category: Side effects

Replies: 3

Last updated: 11 June 2019
Rick B on 26 April 2019

Category: Uncategorised

Replies: 4

Last updated: 11 June 2019

Imatinib and alcohol
by EvaH (Jun 11)

I cant drink as much as I used to ...i find it gives me disproportionate hangovers
Im very happy to have CML as an excuse to drink in moderation :)

by Philiptibbs (May 25)

I'm taking Imatinib and I drink Lime alcohol seltzer drinks and they seem to be better for me. If I drink a margarita or alcohol drink as my first drink I get a little tired but after 3-4 I

by LisaLisa (May 20)

I have noticed the same thing. Alcohol just makes me feel...weird sometimes. I hardly drink at all now. But Guinness is usually ok. No idea why. But I can actually have 2 of them and stay awake!

by David Fitz (Apr 26)

I can't think of any particular reason why that might be. Low blood counts wouldn't really impact your blood alcohol concentration - that is blood volume, rather than content.
David.
Category: Uncategorised

Replies: 4

Last updated: 11 June 2019
Tanya Cuffe on 11 June 2019

Category: Uncategorised

Replies: 0

Last updated: 11 June 2019

Melatonin and other sleeping aids?
by Tanya Cuffe (Jun 11)

Hi all! Sleep question.Sleep is a problem so am taking Melatonin and an antihistamine otc sleep aid.Are these ok to take with our disease and on Sprycel?Also just wanted to add am feeling better on
Category: Uncategorised

Replies: 0

Last updated: 11 June 2019