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Felix on 30 June 2019

Category: Side effects

Replies: 7

Last updated: 1 July 2019

Dasatinib any eye or pain problems
by David Fitz (Jul 1)

Your body your rules, as far as I’m concerned. I’ve had that discussion with my doctor a few times - she’s fab, probably at the more cautious end of the spectrum but fully respects

by Felix (Jul 1)

Hi David, on Scubas recommendation I am taking 50 mg ,my Doc and Consultant don't agree with me taking this lower dose of course they say 100 mg but I decided on lower dose cos it's my body

by David Fitz (Jul 1)

That is a good low number, heading down to MR4 soon - hopefully.
Assuming you are taking 100mg of dasastinib, perhaps you could discuss a dose reduction with your doctor. Scuba has explained many

by Felix (Jun 30)

Last one was 0.04 6 weeks ago had a test this week so hoping it's gone down a bit more .
Category: Side effects

Replies: 7

Last updated: 1 July 2019
Jerry123 on 25 June 2019

Category: Uncategorised

Replies: 4

Last updated: 30 June 2019

Diagnosed with CML
by Jerry123 (Jun 30)

Hi, I will mention this drug to my oncologist and see if this maybe another alternative if in fact the sprycel is the culprit.
Take care. Jerry

by Krimmy17 (Jun 28)

Just wanted to say good luck! I also am being treated for CML with Roswell though I am on gleevec and have not had any issues with my taste and smell. Hopefully they will come back soon!

by Jerry123 (Jun 25)

Hi David, thanks for the article apparently they don't really no what's causing smell and taste issues yet. This started 3 days after I started taking the sprycel. When I get up in the morning I

by David Fitz (Jun 25)

Hi Jerry,
I think there could be a few factors at play here. A CML diagnosis is a big thing to take in, and often people find that they least their appetite and just feel off their for for a while.
Category: Uncategorised

Replies: 4

Last updated: 30 June 2019
Jadey on 28 June 2019

Category: Uncategorised

Replies: 3

Last updated: 29 June 2019

Slight increase in bar abl in MMR
by chrissie (Jun 29)

The lower our PCRs fall the more they bounce around (think of looking for needles in a haystack!). If there is an upward trend of more than 3 tests, then levels may be starting to rise - but not

by kat73 (Jun 28)

Jade - Yes, we've all had such changes. It could be a blip, but more probably, the 0.004 was the anomaly and you really are settling in around 0.01 for the time being. That is a

by onekayaker (Jun 28)

Jade same thing here. Just had a blood draw today. I went to .0595% in a month and a half while taking just 300mg of bosulif and fully expected to me at MR4 a month ago. Instead I

by Jadey (Jun 28)

Hi does anyone know if it’s normal to have a slight increase in BCR ABL when in MMR my results dropped from 0.37 (then started Nilotinib from Imatinib) to 0.02 to 0.01 to 0.004 and then rose
Category: Uncategorised

Replies: 3

Last updated: 29 June 2019
Damian Gabilondo on 27 June 2019

Category: Uncategorised

Replies: 3

Last updated: 28 June 2019

PCR 12 Months
by onekayaker (Jun 28)

Awesome for you!!

Steff

by ColoradoGuy (Jun 28)

Congratulations on your response. I believe you can safely say that reducing your dose is in order. If I'm not mistaken the recommended starting dose is 400mg so at a minimum you can

by scuba (Jun 27)

Yes - you are a perfect candidate for dose reduction.
Your PCR level has dropped in one year of treatment to statistically "undetected" (i.e. PCR < 0.01%). Third and fourth decimal

by Damian Gabilondo (Jun 27)

Hello everyone, I pass the report of 12 months of treatment with Tasigna 600 daily.
03/13/2018 PCR 58 IS DX
08/21/2018 PCR 0.028 IS
04/02/2019 PCR 0.022 IS
06/06/2019 PCR 0.0098
Category: Uncategorised

Replies: 3

Last updated: 28 June 2019
jmonzione on 13 June 2019

Category: Side effects

Replies: 4

Last updated: 27 June 2019

Sprycel and pain/discomfort/fatigue
by Chuckster (Jun 27)

Thanks!
Chuck.

by onekayaker (Jun 25)

Awesome Chuckie!

Steff

by Chuckster (Jun 25)

Going back on meds after being off of the 50 MG daily of Sprycel since May 24th.
I got my oncologist to agree with lowering the dosage of Sprycel to 20 MG Daily!
Starting the new dosage beginning

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
Category: Side effects

Replies: 4

Last updated: 27 June 2019
ColoradoGuy on 26 June 2019

Category: Blood tests

Replies: 0

Last updated: 26 June 2019

21 Month PCR Update Sprycel to Nilotinib
by ColoradoGuy (Jun 26)

I wanted to update everybody on my PCR results after switching from Dasatinib to Nilotinib. I can no longer log on using my Google account for some reason so there are other threads under my
Category: Blood tests

Replies: 0

Last updated: 26 June 2019
Liamsdad on 25 June 2019

Category: Uncategorised

Replies: 4

Last updated: 25 June 2019

Stem cell transplant
by Liamsdad (Jun 25)

Thanks, I was already in 20 mg of Sprycel and was admitted to ER twice.

by scuba (Jun 25)

Consider returning to sprycel low dose no more than 20 mg.
It will likely be more effective than 300 mg gleevec and you may avoid side effects that you can feel at that dose.
It is much more

by Liamsdad (Jun 25)

PCR 1.2

Gleevec- gastro, skin, bleeding, fatigue weight loss

Sprycel - chest pains, dizziness, gastro, pleurisy,

Tasigna - enzyme issues, anemia, numbness in legs

Bosulif -

by scuba (Jun 25)

What were the side effects you were experiencing?
What is your current status (PCR/ blood counts)
Category: Uncategorised

Replies: 4

Last updated: 25 June 2019
Tanya Cuffe on 11 June 2019

Category: Uncategorised

Replies: 1

Last updated: 25 June 2019

Melatonin and other sleeping aids?
by johnw1001 (Jun 25)

Hi Tanya,
I have taken melatonin before to counteract jet lag only.Apparently it is taken for a range of conditions in the medical field but whether it works or not is to be queried.My search

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: 1

Last updated: 25 June 2019
Gian P on 19 June 2019

Category: Side effects

Replies: 6

Last updated: 24 June 2019

Sprycel and brown urine?
by Tbrand (Jun 24)

I’m glad it was something that can be effectively managed. Best to you.

by Gian P (Jun 23)

As it turns out i have a kidney stone 1 cm at my right side.
I will see a urologist Monday, and drinks a lot of water. In the scheme of things, that was not a bad news. Thank you all.
g

by Gian P (Jun 20)

Thank you Ian
i appreciate that you share your story, i just did a ct scan and waiting for results, the doctor found some small particle of blood and also prescribed antibiotics.will keep you guys

by ipmaki (Jun 20)

Hi Gian,
I actually had something similar about 6 months ago. I have been on Sprycel 100mg for the last 16 months or so. I had a urinalysis that came up with nothing. The color went away after a
Category: Side effects

Replies: 6

Last updated: 24 June 2019
Jenny9391 on 19 June 2019

Category: Uncategorised

Replies: 1

Last updated: 21 June 2019

12
by David Fitz (Jun 21)

Hi Jenny,
As an admin, I can see you edited your post. It was originally much longer - and now only a couple of characters.
Did you meant do that? Or, did you want to delete it?
David.

by Jenny9391 (Jun 19)

12
Category: Uncategorised

Replies: 1

Last updated: 21 June 2019
Rashmi Agarwal on 20 June 2019

Category: Reproductive health

Replies: 2

Last updated: 21 June 2019

male fertility with imatinib 400
by David Fitz (Jun 21)

Hi Rashmi,
For fertility, it’s much better to be a man with CML than a woman. Especially on imatinib where the data shows that it’s safe to father a child while taking imatinib.
Have a

by AlastairC (Jun 20)

Hi, have a look at this thread from earlier in the year. Hope it helps

by Rashmi Agarwal (Jun 20)

heloo everyone, my husband is diagnosed with cml, and is on imatinib 400 since 9months, we both are 30yrs and were trying for pregnancy when this was diagnosed. now as his reports are stable, we
Category: Reproductive health

Replies: 2

Last updated: 21 June 2019
Mick E on 15 June 2019

Category: Uncategorised

Replies: 5

Last updated: 20 June 2019

Dasatinib (sprycel)
by Diane CW (Jun 20)

Hi Mick
I know exactly what you mean about side effects etc sending you mad. I have been on such a rollercoaster of emotions since diagnosis in Nov 2017. I just begin to think I have cracked it and

by Mick E (Jun 20)

Hello Diane :-)
Hope you get you numbers back down on liver function! All a bit frustrating the side effects of these meds as you never know what’s happening and the causes of the

by Diane CW (Jun 20)

Hi Mick and Mike
I am currently on 400mg Bosutinib but it is also affecting my liver, also my last bcr test showed an increase from 4.5% to 5.4% which worried me.
Dr has said wait and see what bcr

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.
Category: Uncategorised

Replies: 5

Last updated: 20 June 2019
Lorilyn316 on 19 June 2019

Category: Uncategorised

Replies: 5

Last updated: 19 June 2019

Blast phase Treatment
by Tbrand (Jun 19)

At diagnosis PCR was 46, WBC was 96,000, normal spleen and other blood counts were good. No other therapy. No side effects either. I hope the drugs work well. Best to your husband.

by Lorilyn316 (Jun 19)

Very interesting. Thank you for sharing. Do you recall what your PCR was at diagnosis? Have you done any other therapy’s along withthe Gleevac? Glad you are doing well!

by Lorilyn316 (Jun 19)

Hi Scuba, thank you for your response. His CML expresses itself very strange. Very rare! It’s almost like Myeloma. He’s never had high white counts. In fact, when diagnosed it was

by Tbrand (Jun 19)

My diagnosis 3.5 years ago was blast phase, that’s what my medical record says. BMT never came up from my ONC. Put on 600mg Gleevec and zero blasts or mutations at 6 month BMB. MMR at 12 month
Category: Uncategorised

Replies: 5

Last updated: 19 June 2019
Sarah63 on 16 April 2019

Category: About CML

Replies: 8

Last updated: 19 June 2019

How common is this...(?)
by r06ue1 (Jun 19)

Going to reply under my post.

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"
Category: About CML

Replies: 8

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
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
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
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
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