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S Davis on 27 October 2019

Category: Side effects

Replies: 7

Last updated: 11 November 2019

Looking for treatment options for bumpy red rash from Dasatimib
by domonthebay (Nov 11)

one temporary relief I recently found to itching skin/rash from Dasatinib is Dr. Bronner Pure Castile Peppermint Soap - I am not sure if you can get it everywhere but likely on the web... (see

by S Davis (Nov 10)

The dose of Dasatinib I am on is 80 mg. The bumpy rash is persisting, but not worsening and is otherwise not symptomatic. Keeping skin well moisturized seems to help. Remarkably,

by Rosiem (Nov 9)

Since my dose of Dasatinib was increased to 70 mg, I have an itchy, scaly rash in both eyes and around the left eye. I moisturise the ears with tea tree cream twice a day and that seems to control

by S Davis (Nov 6)

Thank you for sharing your experience. After two weeks, the widespread bumpy, red rash seems to be dissipating a bit. It is not itchy or burning. I too think just keeping my skin
Category: Side effects

Replies: 7

Last updated: 11 November 2019
chrissie on 27 February 2018

Category: Side effects

Replies: 14

Last updated: 9 November 2019

Higher creatine level (kidneys)
by chrissie (Nov 9)

Hi Richard
Thank you for your thought. No problem with kidneys now - and I can't remember what the outcome was back in 2018- so I guess all was OK
Funnily enough I had my latest results back

by Richd478 (Nov 9)

Hi,
I wanted to follow up with you to see if your doctor ever found out the cause of the elevation. Currently I’ve been on Gleevec for 8 years with no issues and full MMR remission. However,

by chrissie (Mar 3)

Thanks for your reply Isla .I printed off the article for my GP .David also gave me the link. Thanks also for your reassurance,
Hope you are doing well
Best
Chrissie

by Isla D (Mar 2)

Hi Chrissie
My creatinine levels have increased and my eGFR levels have decreased since starting dasatinib so I've done a fair bit of panicking and research on TKIs and kidney health myself.
In 2016
Category: Side effects

Replies: 14

Last updated: 9 November 2019
vholly on 25 October 2019

Category: Blood tests

Replies: 3

Last updated: 9 November 2019

Rising BCR-ABL
by Amackerness (Nov 9)

The same thing has happened to me gone up to 0.026 from 0.009. First increase and being 're tested next month I have felt so much better and I really don't want to change medication.

by vholly (Oct 30)

Thank you kat73 - great to have reassurance from you. Much appreciated!
victoria.

by kat73 (Oct 25)

Absolutely of no concern whatsoever. Completely statistically insignificant. Well within lab error range, sample error range. As Scuba likes to call it, the "noise" of

by vholly (Oct 25)

Hi all,
apologies for repeating a common thread but I can’t find info that contains similar numbers to mine so I want to put a question out there.
I’m just over 2 year since diagnosis -
Category: Blood tests

Replies: 3

Last updated: 9 November 2019
vonnie on 8 November 2019

Category: Uncategorised

Replies: 2

Last updated: 8 November 2019

Diarrhoea
by vonnie (Nov 8)

thanks Alex very much for your reply
Vonnie

by alexmcpee (Nov 8)

Hi there.
Ive been on treatment for 19months and get bouts of the above and constipation from time to time. I’ve recently been having probiotics as recommended by someone else and my “

by vonnie (Nov 8)

Hello everybody have not been on line for quite a while but i would love some advice if at all possible,i experiencd a sudden bout of the above during the night and i am trying to find a cause for
Category: Uncategorised

Replies: 2

Last updated: 8 November 2019
scuba on 8 November 2019

Category: Uncategorised

Replies: 0

Last updated: 8 November 2019

2019 ASH Conference Abstracts
by scuba (Nov 8)

https://ash.confex.com/ash/2019/webprogram/start.html
Category: Uncategorised

Replies: 0

Last updated: 8 November 2019
JohnFromChicago on 6 November 2019

Category: Uncategorised

Replies: 1

Last updated: 6 November 2019

New Basophils (1% and absolute value of .1) but with decreasing PCR 0.008
by scuba (Nov 6)

I suspect nothing to worry about at all. The fact your PCR is below precision limit of the test (i.e. PCR < 0.01%) suggests your CML is no longer an issue. Basophills rise and fall as the body

by JohnFromChicago (Nov 6)

I recently had my lowest PCR yet 0.008 and on just 50mg which I was very very happy about. However my oncologist contacted me today wants me to return in a three weeks for another CBC and a
Category: Uncategorised

Replies: 1

Last updated: 6 November 2019
alison on 4 November 2019

Category: Uncategorised

Replies: 2

Last updated: 5 November 2019

Update: return to meds after TFR fail (good news)
by alison (Nov 5)

@kat73 That is exactly why I posted this info. There is little on the boards about Bosulif and have never heard of anyone on only 100 mg. I’m really hoping this isn’t too good to

by kat73 (Nov 4)

That is such good news, congratulations! And thanks for sharing the info. This adds to the picture that TFR attempts are not so risky. Good news also on the Bosutinib being

by alison (Nov 4)

Sharing my husband’s experience returning to meds after 2nd TFR attempt:
Everyone likes to hear good news! After only 5 weeks on 100 mg Bosulif (very low dose) my husband’s BCR-ABL is .
Category: Uncategorised

Replies: 2

Last updated: 5 November 2019
scuba on 31 October 2019

Category: Uncategorised

Replies: 8

Last updated: 4 November 2019

Emerging importance of vitamin K2
by scuba (Nov 4)

No harm in taking too much K2 - although for practical and cost reasons, you don't want to go much above 800 mcg per day.
I take about 400 mcg per day between natto and supplements. I keep my K2

by jriccoboni (Nov 4)

Hey scuba I recently had my vitamin d and k checked before taking supplements. My doctor mistakenly checked my vitamin k1 levels and they came out above normal. Does k2 effect my k1 levlels.

by scuba (Nov 2)

Here is a resource list:
https://bodynutrition.org/vitamin-k2/
The one I take is from Innovix Labs (number 4 on the list).

by Mick E (Nov 2)

Scuba
where do you get your K2 mk5 from please.
its been very useful reading your post, thank you! 👍🏻
Category: Uncategorised

Replies: 8

Last updated: 4 November 2019
David Fitz on 12 October 2019

Category: Uncategorised

Replies: 10

Last updated: 1 November 2019

Videos of UK CML Patient Day now available
by Fillette (Nov 1)

Thanks David for sharing. The videos are very informative

by David Fitz (Oct 22)

Thanks! I don’t think there are similar events in the US, at least not as coordinated. You could get in touch with Joannie and Jerry Clements at CML Busters in the US who are clued into US

by domonthebay (Oct 22)

Thanks for posting this content... I am in the US, not sure if there are events like this here (likely there are) but I am only 3 months into my journey with CML so still in heavy discovery mode...

by Mixail (Oct 19)

Thank you for posting. The videos where very informative.
Category: Uncategorised

Replies: 10

Last updated: 1 November 2019
mbrit on 30 October 2019

Category: Getting help

Replies: 4

Last updated: 31 October 2019

(Somewhat) newbie asking for some guidance
by mbrit (Oct 31)

I have read the general info about CML but I have not been able to find blogs like the one you mentioned. It has so much great information, thank you very much!

by kat73 (Oct 30)

Also, see the resources on this site (at the top) in Patient Info and About CML. Everything you could possibly want to know is contained in treyscml.blogspot.com.

by mbrit (Oct 30)

Thank you so much for taking the time to answer!

I feel alot more at ease now and will start researching all the new information.

Thank you again!

by scuba (Oct 30)

Mbrit -
Congratulations on reaching 0.02% in less than a year. Any level below 0.1% is major molecular remission AND you will never die from CML. Over 95% survival rate for patients attaining this
Category: Getting help

Replies: 4

Last updated: 31 October 2019
johnw1001 on 29 October 2019

Category: Food & fitness

Replies: 1

Last updated: 6 June 2022

Lifestyle after cancer
by israel (Oct 31)

This book seems to be an entertaining read. Admittedly, I have a hard time reading books longer than 100 pages (I might not sound smart by saying that) but chapters 15 and 16 have topics that are of

by johnw1001 (Oct 29)

Hi All,
I have come across a publication by Professor Robert Thomas titled "Lifestyle After Cancer". The author is a practicing oncologist in the UK and has done innovative research into
Category: Food & fitness

Replies: 1

Last updated: 6 June 2022
Frenchguy on 28 November 2015

Category: Uncategorised

Replies: 6

Last updated: 30 October 2019

Has anyone experienced brain zaps
by mamjo (Oct 30)

HI Francis,
What happened with your brain zaps? I have been on Sprycel for 2 years and have been experiencing them for about 9 months. They only happen when I am trying to fall asleep.

by sandy craine (Dec 2)

Hi Francis... given your clinicians have suggested a trapped nerve then you might try seeing a cranial osteopath. It is worth a try?
Sandy

by Frenchguy (Nov 29)

Yes, I can't blame tki but no doctor (and I have seen a lot of specialist) knows where it comes from. Most of the time, they told me that it is nerve of my neck which irradiate on the top

by darley (Nov 29)

If you had them even before diagnosis then it can't be Sprycel.
Go back to your doctor and make sure he understands how it affects you and push for diagnosis.
Category: Uncategorised

Replies: 6

Last updated: 30 October 2019
SwanValleySue on 23 March 2008

Category: Uncategorised

Replies: 10

Last updated: 30 October 2019

For the Gals - (Glivec) Heavy Bleeding during periods
by kat73 (Oct 30)

Sounds like perimenopause - a little early, usually in your 40's - can be a decade of this - possibly early because of imatinib? Or it could be fibroids.

by Nshah (Oct 28)

Hi Sue,
Thanks for raising this topic.
I am 35 yrs old, and while I was expecting my third child I got diagnosed with CML in June 2019 during the routine delivery tests, but thankfully everything

by SwanValleySue (Apr 18)

Hi Ladies:
I am glad I lodged a new topic For The Gals - Glivec.
I have been asking "Us Gals" from different chat groups if ladies are having this problem with clotting blood and periods and the

by donnaberry (Mar 26)

I had a surgery performed here in the US called an endometionic ablasion, it is a simple surgery where they burn away the lining of the womb. It has put an end to those awful monthly's. I wonder
Category: Uncategorised

Replies: 10

Last updated: 30 October 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
ckquinn on 28 October 2019

Category: Drug-food interactions

Replies: 3

Last updated: 29 October 2019

Flu vaccine
by johnw1001 (Oct 29)

Hi,
Never had any problems with any of the flu jabs over the last ten years.The most that happens is a sore arm for a while.
My haema-oncologist warned me never to have any live vaccines though eg

by David Fitz (Oct 28)

Nope, no issues. I got mine a couple of weeks ago. It’s not a live vaccine
David.

by gbatalha (Oct 28)

I got mine last week. Doc said it was ok.

by ckquinn (Oct 28)

Any issues with getting the flu vaccine, thanks.
Category: Drug-food interactions

Replies: 3

Last updated: 29 October 2019
jasonswife1686 on 24 October 2019

Category: Uncategorised

Replies: 8

Last updated: 29 October 2019

Reason for transplant
by cmljax (Oct 29)

Life is so unfair. I have been so fortunate to have had a fast and deep response to Tasigna, but had to reduce my dose 3 times (currently on 150 mg/day once per day) because of bizarre side

by jasonswife1686 (Oct 25)

I have had mutation testing and have came up negative.
We will def keep in touch. I do have a Facebook page and caring bridge set up as well :)

by ColoradoGuy (Oct 24)

Praying for you and I second what other members have already said that a silver lining is that a transplant is the only known cure. Very stressful and I cannot relate but sympathize with you.
I

by Hcs1604 (Oct 24)

This is my first post on the forum but I am struck by how similar your story is to mine, so if I can offer any advice I will happily do so.
I was diagnosed in November 2016 at age 23. I was started
Category: Uncategorised

Replies: 8

Last updated: 29 October 2019
Mick E on 28 October 2019

Category: Uncategorised

Replies: 3

Last updated: 29 October 2019

Nilonotib twice daily
by Mick E (Oct 29)

I’ve never even heard of the term “pharmacokinetics”! I will also have to Google that!
thanks for the reply

by Ben K (Oct 29)

I’m sure if you were interested enough you could locate the data on the pharmacokinetics of Nilotinib. Dose frequency is not a measure of effectiveness. The dose will be determined

by Dustylloyd (Oct 28)

Hi Mick E, I’ve been on Nilotinib just over 4 years on 400 mg twice a day (800 mg) I’ve mentioned this before on Cml Support before and was surprised that a lot of people are on similar

by Mick E (Oct 28)

Why if Nilonotib is more effective than Imatinib is it required twice daily?
i have been looking for information online and as of yet haven’t seen the reasoning for it.
regards
Category: Uncategorised

Replies: 3

Last updated: 29 October 2019
Nshah on 23 October 2019

Category: Blood tests

Replies: 27

Last updated: 27 October 2019

New CML
by Nshah (Oct 27)

Happy Diwali and happy new year to You too.

by Vikram (Oct 27)

Happy diwali and Happy new year.....
Skin whiting.... Problem side effects of IMTINIB......
After 2-3 year diagnosis
Skin whiteing problem normal... (normal skin less whiteing.....)
Don't worry

by Nshah (Oct 25)

Yes exactly.

by Vijay Kumar Verma (Oct 25)

In the word of SCUBA even Cml is boon for us not bane,when we deeply see our underlying health (physical &psycological) issues in relation with cml then we come to realise that it is a message
Category: Blood tests

Replies: 27

Last updated: 27 October 2019
Ben K on 26 October 2019

Category: Uncategorised

Replies: 5

Last updated: 27 October 2019

CML Support Facebook site
by Ben K (Oct 27)

Thanks David :)

by David Fitz (Oct 27)

Thanks Ben,
If it were up to me it would already be deleted but I don’t actually have access to that Facebook account.
Leave it with me and I’ll see what I can do in short time.

by Ben K (Oct 26)

The link is here https://www.facebook.com/pg/CMLSupportGroup/posts/ and the post is a share of a post by Liz Watkins Barton (whoever she is) of a video of "Dr Suzanne Humphries"

by David Fitz (Oct 26)

Can you post me a link to the post? It’s not a page I control but I’ll see what I can do.
David.
Category: Uncategorised

Replies: 5

Last updated: 27 October 2019
mozart8 on 25 October 2019

Category: Drug-drug interactions

Replies: 3

Last updated: 25 October 2019

turmeric not advised with dasatinib
by kat73 (Oct 25)

Supplements are notorious for not being regulated - there could be other things in the capsule. I'm well aware of Scuba's advocacy of it. It has not been put to a good study,

by Vijay Kumar Verma (Oct 25)

Just ask to SCUBA .he will give you solution with the science.

by kat73 (Oct 25)

Just a thought, but maybe your stomach issues are due to the turmeric supplement?

by mozart8 (Oct 25)

hello, i've read a number of posts here about turmeric and dasatinib and what i've read seems positive, especially scuba's posts. i went to see dr mauro (cml specialist) for a
Category: Drug-drug interactions

Replies: 3

Last updated: 25 October 2019