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sandy craine on 28 August 2021

Category: Other conditions

Replies: 10

Last updated: 17 September 2021

vitamin D and melatonin, and how they may help with COVID-19.
by scuba (Sep 17)

If you are going to take 12,000 IU's weekly, best to spread it out during the week (2,000 IU's per day) rather than taking at one time on one day. Any level much above 10,000 per day is not

by sbp03 (Sep 17)

Thanks Scuba, her vitamin D is in its 40s, she really tests twice a year and supplement with 12.000 IU weekly. Our concern was related to an eventual complication in her chronic portal vein

by scuba (Sep 8)

You can absolutely take vitamin D without K2, but just need to be aware of dose and D base level. Vitamin K2 is a sort of safety valve for D. Take in too much D and the k2 helps mop it up. I did

by sbp03 (Sep 7)

Hi Scuba, would it be of concern on taking vitamin D without K2 as my wife is also taking warfarin (vitamin k antagonist) and her doctor advised it against vka and K2 interaction, but not against
Category: Other conditions

Replies: 10

Last updated: 17 September 2021
Zzyzxuk on 12 October 2020

Category: Uncategorised

Replies: 14

Last updated: 16 September 2021

Just found out... :(
by jonnie turpie (Sep 16)

It has worked! Your diary has been sent using the envelope messaging function. I see it is very extensive with a great title: A High Powered Mutant of My Own Making
I will begin reading

by jonnie turpie (Sep 16)

OK Thanks.

I have send a message using the envelope icon.

by AlastairC (Sep 15)

The forum does have private messaging - see the envelope icon on the right hand side of the ribbon at the top of the page.

by EvaH (Sep 15)

Sure.
I somehow thought this forum had private messages but seems not...
Category: Uncategorised

Replies: 14

Last updated: 16 September 2021
JacqJohn on 11 September 2021

Category: Side effects

Replies: 11

Last updated: 15 September 2021

CML & Imatinib - frequent burst of blood vessel in the eye
by AlastairC (Sep 15)

When I was on 400 mg imatinib I used to have one or two eye bleeds per year. When I reduced to 200mg the bleeds stopped, and other side effects (cramps, bastric issues) were much reduced.

by JacqJohn (Sep 14)

Hi Buzz,
thanks for the feedback. I’ll talk to my hematologist and see… thank you again !~

by Buzzm1 (Sep 13)

JacqJohn, in an effort to eliminate your eye issue, it would be worth trying to have your onc reduce your dosage down to 300mg. You are far enough below CCyR, 1.0, that it shouldn't be a

by EvaH (Sep 13)

Ahh ok, very different to my experience.

I think imatanib is only known for bleeds into the eyeball (which are not visible) but I'm not sure.
Category: Side effects

Replies: 11

Last updated: 15 September 2021
vonnie on 12 September 2021

Category: Uncategorised

Replies: 2

Last updated: 12 September 2021

Abdominal cramps
by vonnie (Sep 12)

Hi John, thank you for your prompt and informative reply.. Regarding your IBS query. I was diagnosed with IBS in 2012 and initially was given mebeverine, an antispasmodic to help with muscle

by johnw1001 (Sep 12)

Hi Bonnie,
You dont say which tki you are on .I have been on imatinib for 15 years and have always found that it leads to rapid bowel movements and this is a common side effect.Looking at the list

by vonnie (Sep 12)

Hi all. I would very much appreciate advice regarding a problem I currently have As well as my CML I have been diagnosed with IBS some years ago. I have over the past month been suffering with
Category: Uncategorised

Replies: 2

Last updated: 12 September 2021
ruddoug09 on 9 September 2021

Category: Food & fitness

Replies: 3

Last updated: 12 September 2021

Fueling exeercise
by sorin real (Sep 12)

Actually, I think I have the same problem. I'm on Tasigna myself , 600mg/day and lately after taking 6 grams/day of L-Glutamine for my IBS, my BCR-ABL has increased from 0.115 to 0.872.
I

by snowman 35 (Sep 9)

Hi!

I work-out too. I do crossfit so my muscles are often very sore and tired. I feel the need too take supplements too help me but my doc told it is better not to take protein, creatine etc

by snowman 35 (Sep 9)

Hi!

I work-out too. I do crossfit so my muscles are often very sore and tired. I feel the need too take supplements too help me but my doc told it is better not to take protein, creatine etc

by ruddoug09 (Sep 9)

Hi all
Ages since I've posted on here but i'm after a bit of advice that I'm struggling to get information on elsewhere. I've read a few threads on here but only picks out
Category: Food & fitness

Replies: 3

Last updated: 12 September 2021
Damian Gabilondo on 9 September 2021

Category: Uncategorised

Replies: 5

Last updated: 10 September 2021

Tasigna - Curcuma ?
by scuba (Sep 10)

Hi Damian,
"what the Doctor told me at some point was that if I take my medication wrong, it could generate some type of resistance or mutation".
Your doctor is min-informed.

by Damian Gabilondo (Sep 9)

Thank you very much, your knowledge helps, what the Doctor told me at some point was that if I take my medication wrong, it could generate some type of resistance or mutation, from the beginning he

by scuba (Sep 9)

I now take "curcumin" in all kinds of forms. The medical part are as capsules (2 grams per day) C3 complex Curcumin with bioperine (pepper). But I also now take Turmeric root (ground as a

by Damian Gabilondo (Sep 9)

Thanks for the answer SCUBA you are a great reference, in what way do you recommend me to consume turmeric? capsules - root? . My doctor does not agree with the reduction very much but if with TFR,
Category: Uncategorised

Replies: 5

Last updated: 10 September 2021
Tanya Cuffe on 7 September 2021

Category: Uncategorised

Replies: 6

Last updated: 8 September 2021

Should I attempt TFR?
by Tanya Cuffe (Sep 8)

Thank you and all the best!

by EvaH (Sep 8)

MMR since feb 2017

Dose reduction started July 2021
Just had my first test a few weeks ago, still undectable. Id have done it sooner but my docs were not keen and covid times weren't conducive

by Tanya Cuffe (Sep 8)

Thank you Alistair I will take a look

by AlastairC (Sep 8)

Tanya, it might be useful to look at this video from the CML SG Patient day 2 years ago. The title is "Reducing or stopping treatment - who and when?" Yes it is two years old, and some
Category: Uncategorised

Replies: 6

Last updated: 8 September 2021
Kathyp on 5 September 2021

Category: Uncategorised

Replies: 2

Last updated: 8 September 2021

Anxious with dose reduction
by chrissie (Sep 8)

I have been on 300mgs for several years now and reached 0.000% on this dosage for the first time - and am holding it 15months later. I have tried 200mgs twice - but both times my PCRs started rising

by Kathyp (Sep 8)

Thank you John that was really helpful, I hope your doing well

by johnw1001 (Sep 8)

Hi,
After 15 years I had to discontinue for 14 weeks back in November 2019 and then continued again as soon as I lost MMR. Before the event my consultant told me that if I lost MMR then

by Kathyp (Sep 5)

Hi all , just started my glivec dose reduction , just doing it a 100 mg at a time but I’m feeling so anxious about it, it’s been my safety net for the last 18 years ,do you guys feel the
Category: Uncategorised

Replies: 2

Last updated: 8 September 2021
Christine R on 7 September 2021

Category: Uncategorised

Replies: 5

Last updated: 7 September 2021

Breast/prostate cancer link to Leuakaemia
by johnw1001 (Sep 7)

On a very general level if one asks the question what causes CML there are no definitive answers except there seem to be three headings of types of influences-1.exposure to radiation,2 exposure to

by sandy craine (Sep 7)

Sorry I misunderstood your post. Alastair is right, there is a link from exposure to ionising radiation - including via radiotherapy for other cancers- and the development of Leukaemia (including

by AlastairC (Sep 7)

Christine have you had radiotherapy at any stage? There is a known link between high dose radiation and an increased risk of leukaemias, including CML. I believe the radiotherapy I had for a

by Christine R (Sep 7)

Thanks Sandy. I was intending on asking that in a couple of weeks when i have an appointment. I seem to be adding it to a long list.
I did ask if even if it was genetic was there anything they could
Category: Uncategorised

Replies: 5

Last updated: 7 September 2021
Danmason11 on 1 September 2021

Category: Drug-food interactions

Replies: 16

Last updated: 7 September 2021

Cough medicine and vitamins
by Danmason11 (Sep 7)

That’s great, thank you all so much for your help and advice.

Dan

by sandy craine (Sep 7)

Hi Scuba,
My suggestion for Dan to start supplementing with high dose for a few weeks is because he has an active COVID infection. If I were him I would want to raise by level as much as

by scuba (Sep 6)

Additional information:

https://www.youtube.com/watch?v=ha2mLz-Xdpg (nice video summary on D3 impact and importance in the body, Covid and related)
https://www.youtube.com/watch?v=dAkaVjKNXJs (

by Danmason11 (Sep 6)

That’s really helpful, thank you all.
That’s right Sandy, I don’t know my plasma levels unfortunately. Therefore, is there any suggestions on what I should start at? And is there a
Category: Drug-food interactions

Replies: 16

Last updated: 7 September 2021
nicolaclubb on 25 August 2021

Category: Treating CML

Replies: 15

Last updated: 7 September 2021

Asciminib
by sandy craine (Sep 7)

Hi John,
Just to add, the MHRA is still the body that licenses all drugs for use in UK, NICE HTAppraisals asses the cost benefit of drugs/technologies for use in the NHS. The NICE HTA of

by David Fitz (Sep 6)

Nicola,
Asciminib is quite different to the other TKIs for CML. It targets a completely different part of the kinase domain.
In the picture below, you can see where nilotinib binds, and this is

by johnw1001 (Sep 6)

Thanks for the reply
If you Google "Jorge Cortes Asciminib" you will see a number of papers and references listed and also a video;apparently the drug has a different binding mechanism

by nicolaclubb (Sep 4)

Hi thanks for the info John.

The ball is being rolled for the approval on compassionate grounds for Asciminib. As I have failed 3 TKIs including Ponatinib.
But for me I
Category: Treating CML

Replies: 15

Last updated: 7 September 2021
Kathyp on 5 September 2021

Category: Uncategorised

Replies: 9

Last updated: 7 September 2021

Anxious with dose reduction
by Buzzm1 (Sep 7)

Kathyp, no I am not a Dr. or consultant. However I did keep track of everyone who attempted TFR and/or dose reduction, including my own gradual dosage reduction and successful TFR, over the

by Kathyp (Sep 6)

Hi Buzz just out of interest are you a dr/ consultant ?
why would you not want extra monitoring while reducing meds?

by Buzzm1 (Sep 6)

EvaH, no, I meant it exactly as stated. It has nothing to do with cost.

by EvaH (Sep 6)

Sure, of course you should!
I think buzz was considering cases where the patient needs to pay for bcr/Abl test ($1000 usd where i live) and was offering another way forward in case cost was a
Category: Uncategorised

Replies: 9

Last updated: 7 September 2021
MANNI OBEROI on 6 September 2021

Category: Uncategorised

Replies: 1

Last updated: 6 September 2021

International scale 0.02
by chrissie (Sep 6)

Yep, very good. You are in MMR. Please see Page 14 of this booklet on this site to explain blood results. https://cmlsupport.org.uk/node/20097
Best
Chrissie

by MANNI OBEROI (Sep 6)

Is this good or not
Category: Uncategorised

Replies: 1

Last updated: 6 September 2021
Humberto on 19 July 2021

Category: Treating CML

Replies: 4

Last updated: 4 September 2021

BCR Rising?
by Humberto (Sep 4)

Just to let you know, my BCR level has gone down to 0,77 after 8 weeks with Imatinib.
So, after the first 2 weeks it raised from 2,7 to 5,4, and after 6 more weeks it has gone down to 0,77.
I'm

by Nimbus2 (Jul 21)

You have some complicating factors here, but my consultant advised me that a three month elapsed time is required before testing is performed after a change of TKI. Your consultant's approach

by Humberto (Jul 20)

Thank you Alastair. Crossing fingers :-)

by AlastairC (Jul 19)

Hi
I think two weeks is likely too short a time to see any difference, but not 100% sure. The first check after any change for me (in UK) has been 1 month after the change and another 1 month later
Category: Treating CML

Replies: 4

Last updated: 4 September 2021
snowman 35 on 27 August 2021

Category: Drug-drug interactions

Replies: 7

Last updated: 3 September 2021

Possible interactions Phizer vaccine with Sprycel?
by An (Sep 3)

Everything will be fine....drink lots of water,my husband is taking 100 mg sprycel and had both doses,both of us had sore arms for 2 days,long term effect we don't know ,I am from India and having

by snowman 35 (Sep 3)

Today I ll do my first dose! Hope a everythung will be fine! Thank you all for your replies!!

by hannibellemo (Aug 28)

snowman, I take 150mg Tasigna 2x/day. I've had the Moderna vaccinations and a booster last week. (I thought better safe than sorry.) I was far more afraid of having Covid and possibly having

by snowman 35 (Aug 28)

Thank you all for your replies!!

Does anyone of you fear possible health issues because o lf the vaccine in the future or I am the only? I have to admit that I do not fill very good with my
Category: Drug-drug interactions

Replies: 7

Last updated: 3 September 2021
mil on 30 August 2021

Category: Uncategorised

Replies: 2

Last updated: 31 August 2021

bilirrubins
by JPD (Aug 31)

1.7 is barely high at all. I would not overly stress about it. If your other liver markers were in the green especially.

by cmljax (Aug 31)

My total bili hit 1.9 about 2.5 months after initiation of treatment with 600 mg/day Tasigna (9/2016). My doc and I both think it was the Tasigna that caused it. Fortunately, it resolved on it's

by mil (Aug 30)

Hi guys, i am in my almost one year and a half treatment with Imatinib 400mg, i never had any problem with my lab tests, but three weeks ago i changed my imatinib from one brand to another one due
Category: Uncategorised

Replies: 2

Last updated: 31 August 2021
Crfharris on 16 August 2021

Category: Uncategorised

Replies: 14

Last updated: 13 September 2022

COVID-19 Booster
by Tel (Aug 25)

Thanks Scuba very useful information, test scheduled.

by scuba (Aug 25)

The rate at which our bodies manufacture and use vitamin D is unique to the individual. One dose for one person may be inadequate to enable a D level above 50 ng/ml and for someone else too much.

by Tel (Aug 25)

Thanks Scuba, very informative. To achieve 50ng/ml what dosage of Vitamin D is required to achieve this? how many mcg?

by scuba (Aug 18)

Additional information on Covid, vaccines and ADE:
https://davidson.weizmann.ac.il/en/online/reasonabledoubt/ade-and-corona...
"In the Emergency Use Authorization that the FDA has
Category: Uncategorised

Replies: 14

Last updated: 13 September 2022
Dr Sarang Tamhne on 22 August 2021

Category: Side effects

Replies: 5

Last updated: 24 August 2021

How to manage side effects of anti-CML tyroisne kinase inhibitors?
by Ismo (Aug 24)

You are quite right to focus on achieving MMR while maintaining the best quality of life your mother can manage while taking TKIs other people will tell you their experience some will be quite

by Dr Sarang Tamhne (Aug 24)

Dear EvaH,
Many thanks for your reply and suggestions.
When on Imatinib she was taking Gleevec as the generic medicine and fortunately did well from Nov 20 till May 21 with no major concerns.
I will

by kat73 (Aug 23)

1) First she must get to MMR, which is 0.1% IS. After that, she is much, much safer and it isn't so very imperative to get any lower, factoring in the possibility of intolerable side

by Ismo (Aug 23)

I have to endorse @Evah's comments unfortunately TKIs come with side effects. I am someone who struggled with Imatinib for a long time and still do occasionally (nearly 10 years later) not
Category: Side effects

Replies: 5

Last updated: 24 August 2021
SS86 on 12 August 2021

Category: Side effects

Replies: 16

Last updated: 23 August 2021

Facial Swelling with Dasatinib
by SS86 (Aug 23)

Thank you David. Will try to share this with the doctor and convince.

by David Fitz (Aug 23)

Here is one study, with fairly long-term data that supports 50mg dasatinib:
https://acsjournals.onlinelibrary.wiley.com/doi/full/10.1002/cncr.32504
This is the same study, I believe, with

by SS86 (Aug 23)

Thanks. have consulted 3 docs and all had the same dose recommendation. While i was hopeful that the dose would reduce that doesnt seem to be the case. One of them was of the opinion that dose would

by SS86 (Aug 23)

Hi,
Thanks for the revert. have consulted 3 hematologists and all had the same opinion. Can you share some links which I can discuss with my doctors next time.
Thanks
Category: Side effects

Replies: 16

Last updated: 23 August 2021
Jmbnccyn on 27 July 2021

Category: Uncategorised

Replies: 10

Last updated: 21 August 2021

Various questions, leukocytes, Vit D, creatinine, supplements ..
by kat73 (Aug 21)

OK, you're being generally steered in the right direction here. One thing no one has mentioned is that imatinib can "artificially" raise your creatinine level. It often

by Jmbnccyn (Aug 3)

correction I just checked the exact creatinine figure and it's 1.8 I don't know why I had 2.5 in mind, in any case it's still high, but not as much as I thought

by Jmbnccyn (Aug 3)

Hello, I am 23 years old, diagnosed 9 months ago, my creatinine is approximately 2.5 I do not know the exact figure at the moment, I already mentioned it in my previous comment, yes, I exercise

by snowman 35 (Aug 3)

Do you excercise with weights? Usually except winter my creatinine is a little bit higher than normal although I drink about five liters of water. My last test of creatinine before one month was 1.
Category: Uncategorised

Replies: 10

Last updated: 21 August 2021