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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
skiinglaketahoe on 19 August 2021

Category: Uncategorised

Replies: 3

Last updated: 20 August 2021

Ponatinib
by Buzzm1 (Aug 20)

Susan, you might want to ask your onc to first start you on 15mg to gauge your reaction to the Ponatinib. Ponatinib is not known to be an easy TKI to take.
What is your CML history that

by skiinglaketahoe (Aug 20)

Hi
I think I was on 400mg. I've given the pills back now so can't check. It was one pill/day.
I believe I'm starting on 30mg of Ponatinib next week.
Susan

by Buzzm1 (Aug 19)

What dosage of Bosutinib were you on? Oncs typically start CML patients on lower dosages of Bosutinib, i.e. 200mg, and then increase the dosage.
What dosage of Ponatinib have you been

by skiinglaketahoe (Aug 19)

Hi
Is anyone on Ponatinib? I'm starting this next week and would be interested in other people's experiences.
I didn't do well on Bosutinib. I had a rash after 2 days, I stopped it and
Category: Uncategorised

Replies: 3

Last updated: 20 August 2021
Betty8 on 5 August 2021

Category: Treating CML

Replies: 9

Last updated: 25 August 2021

Not responding to treatment 1 year on
by Ismo (Aug 19)

Useful info thanks! yes the side effects profile do seem a little more serious with these two TKIs but of course they are said to be more effective than Imatinib, all about risk benefit analysis I

by Ismo (Aug 19)

I dont know yet still waiting tests from Kings I sincerely hope not.

by EvaH (Aug 19)

For info, I have no experience with NHS guidelines either. From what i have seen advice for CML varies between countries /continents especially depending if you or your insurance pays for treatment

by David Fitz (Aug 18)

Second line decision between dasatinib and nilotinib is generally down to issues such as previous heart problems, or potential for lung problems. Both drugs are perfectly approved for second line (
Category: Treating CML

Replies: 9

Last updated: 25 August 2021
scuba on 12 August 2021

Category: Uncategorised

Replies: 0

Last updated: 12 August 2021

The sun, vitamin D and where you live
by scuba (Aug 12)

https://gml.noaa.gov/grad/solcalc/azel.html

Above is a link to a solar elevation calculator based on time of year and where you live.
As you know by now, vitamin D is vital for good immune
Category: Uncategorised

Replies: 0

Last updated: 12 August 2021
scuba on 8 February 2018

Category: Other conditions

Replies: 7

Last updated: 9 August 2021

TKI's affect kidney function
by Sunny (Aug 9)

David, what a wonderful website Sci-Hub is, thank you .

by Mick E (Aug 9)

Only just read this post!
im having problems with muscle loss and a big decrease in exercise capacity since treatment with Nilonotib started. Is there any way of reducing the effect it has on

by Nimbus2 (Aug 9)

Thank you, David. My GFR fluctuates wildly. Four weeks ago it was 64 and today it is 54. I was wondering whether this is a dasatinib issue.

by David Fitz (Aug 9)

You're right - it seems Sci Hub has moved to https://sci-hub.tf/
I've edited my comment.
David.
Category: Other conditions

Replies: 7

Last updated: 9 August 2021
FirefighterCML on 21 July 2021

Category: Uncategorised

Replies: 4

Last updated: 9 August 2021

I NEED HELP / New Results and Questions about dose reduction
by Maddie (Aug 9)

I started on 50 mg. From Dana farber
june 20. 37
sept. .00126
Nov. .0055
march. .0187. Went o bit up after surgery
MAY. UNDETECTABLE

Dr

by SueAngel (Jul 24)

Hi. Here are some links. I have read many of the posts on this site and saved articles along the way. Hope this helps.

https://zero.sci-hub.se/6751/889c75a25a79cc4c23c0cfb6548a0680

by AlastairC (Jul 23)

Hi
Congrats on your excellent response.
You might find it useful to view this video which is Prof Richard Clarke talking about dose reduction and TFR in relation to the UK Destiny Trial at the CMLSG

by ColoradoGuy (Jul 23)

Regarding the bug bites I had a similar situation two and a half years ago. I got bit near my ankles and it did not go away for over a year. Even when it did I was left with a little bruise like
Category: Uncategorised

Replies: 4

Last updated: 9 August 2021
Heidi Kuyper on 3 August 2021

Category: About CML

Replies: 2

Last updated: 4 August 2021

UPDATE (Successful pregnancy and healthy babies on Sprycel and Bosulif)
by David Fitz (Aug 4)

Wondeful! Congratulations.
More and more it seems men have nothing to worry about having kids with TKIs.
David.

by EvaH (Aug 4)

Fantastic update heidi!!

by Heidi Kuyper (Aug 3)

Just an update for those who may be in the same situation. My husband was diagnosed with CML in 2017 and since then has taken every TKI but Tasignia. We currently two healthy children one born while
Category: About CML

Replies: 2

Last updated: 4 August 2021
sandy craine on 4 August 2021

Category: Uncategorised

Replies: 0

Last updated: 4 August 2021

CML treatment and Pregnancy - Reminder
by sandy craine (Aug 4)

Managing Pregnancy during CML treatment. iCMLf conversation detailed in post pinned to the top of this page
sign in tomorrow 5th August.
Sandy
Category: Uncategorised

Replies: 0

Last updated: 4 August 2021
ADJL on 23 June 2010

Category: Uncategorised

Replies: 32

Last updated: 3 August 2021

Fertility on Dasatinib
by Heidi Kuyper (Aug 3)

I know this is an older post but just an update on my own situation with my husband who was diagnosed. We've both had two successful pregnancies and healthy babies while he was on Sprycel, for

by MekaMa (Dec 17)

Hi,
I saw your post and would love to know how you ended up proceeding. Did you conceive through IVF or the good ole fashion way? If the good ole fashion way, how is the baby?

by sarahz (Mar 8)

Hi all
I was diagnosed of cml 9 years ago at the age of 25 i was married then & i didn't have kids , I'm asking about pregnancy while on sprycel because all the comments I read are concerning

by sarahz (Mar 8)

Hi all
I was diagnosed of cml 9 years ago at the age of 25 i was married then & i didn't have kids , I'm asking about pregnancy while on sprycel because all the comments I read are concerning
Category: Uncategorised

Replies: 32

Last updated: 3 August 2021
scuba on 16 July 2021

Category: Uncategorised

Replies: 15

Last updated: 3 August 2021

Treatment Free Remission (TFR) update:
by snowman 35 (Aug 3)

So happy for you Scuba!!

by scuba (Jul 27)

I take 800 mg per day in the morning on an empty stomach.
It is a strong anti-histamine on its own and great during allergy season (pollen) - no sneezing.

by Felix (Jul 27)

Hi Scuba ,I am interested in Quertecin. Could you tell me how much you take and how often ,and can you take it long term .Thank you ,Denise.

by scuba (Jul 27)

I was told by M.D. Anderson researchers that TFR can be maintained as long as PCR values are < 0.1%. Given that I am "undetectable" three months into my TFR experiment, if I do become
Category: Uncategorised

Replies: 15

Last updated: 3 August 2021