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Karinne on 10 September 2023

Category: Uncategorised

Replies: 2

Last updated: 11 September 2023

CML forum from LLS in the US
by Karinne (Sep 11)

Thanks

by RC Kirk (Sep 11)

https://community.lls.org/s/
You might have to create a new log in.

by Karinne (Sep 10)

Hello everyone,

Did anybody knows anything about the CML forum on the US site from LLS?

I used to have access and I cannot find it any longer?!

Best,

Karinne
Category: Uncategorised

Replies: 2

Last updated: 11 September 2023
suvankardas on 11 September 2023

Category: Children & young people

Replies: 1

Last updated: 11 September 2023

BCR ABL IS on the rise
by scuba (Sep 11)

Change drugs.

(Same thing happened to me with imatinib. It didn't work, so I was switched to sprycel which did work (and on a very low dose as well).

by suvankardas (Sep 11)

Since my detection in last November, I am on Imatiniv. Due to serious side effects doc had to reduce my dose from 400 to 300. I am on it till today. Last month my BCR ABL IS has increased from 1.28
Category: Children & young people

Replies: 1

Last updated: 11 September 2023
snowman 35 on 8 September 2023

Category: Other conditions

Replies: 4

Last updated: 8 September 2023

Sprycel stability
by snowman 35 (Sep 8)

Thank you very much Scuba!!

by scuba (Sep 8)

As long as the sprycel pills are intact, it's not an issue.

by snowman 35 (Sep 8)

Hi Scuba

A cylidrical white thing that contains really small pellets to absorb humidity in the bottle..

by scuba (Sep 8)

Unless the pill is decomposed into a granular mush (i.e. no more pill), it is fine. Dasatinib is manufactured as a salt for stability and to help it dissolve easily when ingested. If exposed to high
Category: Other conditions

Replies: 4

Last updated: 8 September 2023
bendicco on 10 August 2020

Category: Side effects

Replies: 12

Last updated: 30 August 2023

Can't live like this!
by Harriet (Aug 30)

Hi,I had issues with Gleevec, even on 200mg, I just couldn't function anymore,bone pain, joint Pain no energy whatsoever, I got changed to Sprycel 20mg which was pretty awful to begin with but

by bendicco (Aug 12)

You are so right! I have read that all TKI meds have this issue but I imagine that they affect each of us differently. I will have that discussion with him! I am so happy for you in that all

by bendicco (Aug 12)

Hi. Yes I am going to have that conversation with him regarding lowering the dose! Although that does frighten me a bit, but I guess we could always go up again. Thank you for your help!

by Nimbus2 (Aug 12)

Consultants have a mantra that goes, "you cannot blame imatinib for all of your ills". I accepted that the side-effects from imatinib were the cost of achieving a cytogenetics response.
Category: Side effects

Replies: 12

Last updated: 30 August 2023
alexmcpee on 29 August 2023

Category: Uncategorised

Replies: 4

Last updated: 30 August 2023

Diabetes drug to combat cml
by alexmcpee (Aug 30)

Yes mate I was told this by my doc when I was diagnosed here in the UK. We certainly are a unique bunch haha. Hope you’re well mate

by Buzzm1 (Aug 29)

Peter, The American Cancer Society's estimates for chronic myeloid leukemia (CML) in the United States for 2023 are: About 8,930 new cases will be diagnosed with CML (5,190 in men and 3,740 in women

by Dustylloyd (Aug 29)

Hi Alex,
The article is interesting, in a roundabout way it also bought home to me how lucky we are for the discovery of tki medication, any additional help from other medicines is welcoming news,

by RC Kirk (Aug 29)

I'm copying and pasting this just in case the original link becomes outdated in the future.
Diabetes drug may offer new treatment hope for chronic myeloid leukaemia
Published: 17 August 2023
A drug
Category: Uncategorised

Replies: 4

Last updated: 30 August 2023
cmhall604 on 18 July 2023

Category: Uncategorised

Replies: 3

Last updated: 28 August 2023

PCR Increase After Dose Reduction
by scuba (Aug 28)

Hi Chris,
That is great news!

by cmhall604 (Aug 28)

Hi Scuba,
Thanks so much for your informative reply. We spoke to another doctor in the meantime who made the same recommendation as you to consider a switch to dasatinib. However, her most recent

by scuba (Jul 18)

Her doctor is following protocol at three consecutive increases (one log) to establish a trend when a patient is already in MMR.

At this stage given that she remains in MMR (PCR < 0.1%),

by cmhall604 (Jul 18)

Hello all,
Haven't checked in in a while but I wanted to get your thoughts on some recent trends with my wife's test results.
She has been taking nilotinib for 3.5 years without any noticeable side
Category: Uncategorised

Replies: 3

Last updated: 28 August 2023
Alex1981 on 23 August 2023

Category: Blood tests

Replies: 6

Last updated: 25 August 2023

Results have gone up 3 times in a row
by Alex1981 (Aug 25)

That’s Great!! Ok , let me see if I can catch you up 😁 sounds like you are doing very well and that fills me with hope

by RC Kirk (Aug 25)

My results have been trending down over the last couple of years. I'm back on original Gleevec and currently 200mg per day.
2022 0.1290%, 0.0671%, 0.0264%, 0.0268%
2023 0.010% (new lab - Quest

by Alex1981 (Aug 24)

Hello . :) 2012 was the year. . I remember the olympics being on when I just found out. Wondering what would be , my son was 2 years old , very worrying time . What are your results like now ? The

by Alex1981 (Aug 24)

Thanks for the reply . It’s kind of reassuring . I don’t take any supplements , I just try and live clean , I use to smoke cigarettes and marijuana , I was never a big drinker . I now do none of
Category: Blood tests

Replies: 6

Last updated: 25 August 2023
Ontasigna on 15 February 2019

Category: Treating CML

Replies: 3

Last updated: 23 August 2023

Turmeric and Nilotnib
by scuba (Aug 23)

CYP3A4 is an enzyme produced by the liver to breakdown toxic substances found in the body especially medications. Medications are designed and tested along absorption, peak concentration and then

by igennem (Aug 22)

Just out of curiosity when you have asked Novartis if curcumin is safe to take have they also confirmed black pepper and piperine?

As I read piperine is a strong CYP3A4 inhibitor whatever that

by sorin real (Feb 25)

Even I have CML and I have asked the same question as yourself. After a lot of research on the net where I did not find anything, I decided and wrote an email to Novartis ,the company that produced

by Ontasigna (Feb 15)

Hi there,
I am planning to start with Turmeric & black Pepper once a day. I have read posts of scuba about it.
My question - is it safe to take turmeric/black pepper with Nilotnib.
Thank you
Category: Treating CML

Replies: 3

Last updated: 23 August 2023
ASJ on 7 August 2023

Category: Treating CML

Replies: 3

Last updated: 22 August 2023

Chances of TFR
by igennem (Aug 22)

but he already has an increasing bcr-abl since 2020

by Buzzm1 (Aug 10)

Tasigna 800mg for 7 years sounds like abuse.
In my opinion, based on your results, your doctor should have reduced your dosage after the first year of Tasigna 800mg.
If you can't first reduce your

by scuba (Aug 7)

May I ask which country you live? I am curious regarding the health plan which restricts your choice (doctor prescribing) of TKI. I am surprised you are tested annually instead of every three months

by ASJ (Aug 7)

Hi,
This is my first post in this forum although I was diagnosed with CML in Feb 2016 and have been on Tasigna 800mg(2pills morning and 2 evening) daily since then. Its been 7 years on this journey
Category: Treating CML

Replies: 3

Last updated: 22 August 2023
ThomasS on 17 October 2017

Category: Side effects

Replies: 3

Last updated: 20 August 2023

Sprycel Side Effects
by ThomasS (Aug 20)

Karen,
I'm not sure if you remember me but I sent you a message way back in 2017 asking about Bosutinib. I'm still on 40 mg of Sprycel but having some PE issues. My Dr wants to switch to Bosutinib.

by ThomasS (Oct 18)

Karen, thanks for the reply. The main issues I'm having are joint soreness, low energy, bad ringing in my ears and no sleep. It's really a difficult decision whether I should try switching or not.

by karen (Oct 18)

Hi Tom
I have been on Bosutinib for about 4 years after trying all the others. From my point of view it has been one of the best - I have had a couple of liver issues and I still have some skin

by ThomasS (Oct 17)

I am posting from Atlanta, Ga. I was diagnosed several years ago. Was on Gleevec for several years and Sprycel now for a couple of years. Some of the side effects of Sprycel are difficult and I am
Category: Side effects

Replies: 3

Last updated: 20 August 2023
alexmcpee on 16 August 2023

Category: Side effects

Replies: 1

Last updated: 17 August 2023

Joint pain - later on in treatment
by David Fitz (Aug 17)

Forgive the title of the paper linked below, but red light therapy can possibly help with joint pain. It sounds a bit nuts, but there is quite a lot of evidence behind it. Medics in my family are

by alexmcpee (Aug 16)

Hi everyone,
I posted not so long ago about my joint pain.
My question was not so much who had joint pain as that’s a common side effect of TKI but how many of you started experiencing joint pain
Category: Side effects

Replies: 1

Last updated: 17 August 2023
Sd on 14 August 2023

Category: Side effects

Replies: 1

Last updated: 15 August 2023

changes in mucous membranes
by Buzzm1 (Aug 15)

Sd, since you have been undetectable on Imatinib 200mg since December 2022, you should be able to reduce your Imatinib 200mg dosage down to Imatinib 100mg to see if that solves your mucous membrane

by Sd (Aug 14)

For about the past 6 weeks my usual dry mouth is now worse, mostly because the mucous membranes L and R are very rough. They have the same texture that happens when eating a lime or lemon. Any one
Category: Side effects

Replies: 1

Last updated: 15 August 2023
Danmason11 on 23 July 2023

Category: About CML

Replies: 10

Last updated: 12 August 2023

Heart palpitations
by Roza (Aug 12)

Hi,
Also, ask your doc to double check your thyroid levels at your next blood test just to eliminate any thyroid related issue.
ATB.

by Danmason11 (Jul 24)

Great, thank you very much. Fingers crossed it helps, must admit the heart palpitations have been impacting my mental health a little bit so hoping it helps in the same way it has you 😊

by scuba (Jul 24)

Any magnesium supplement which provides easy to absorb magnesium is fine. Avoid magnesium oxide ("milk of magnesia" types) as these supplements are not easily absorbed, which is why they serve as

by Danmason11 (Jul 24)

I do go to the gym pretty regularly but I wouldn’t say I exercise heavily and sweat profusely to be honest. Diet includes lots of veggies too.
Will give the supplements a go, if you have any
Category: About CML

Replies: 10

Last updated: 12 August 2023
nilotinib on 27 July 2023

Category: Drug-food interactions

Replies: 8

Last updated: 9 August 2023

Reflux problems
by David Fitz (Aug 9)

Ah, OK. You’re right, omeprazole isn’t great to take long-term as it can cause osteoporosis.
You can take something like gastrocote to relieve intermittent reflux symptoms. It works really well.
I’

by nilotinib (Aug 7)

I stopped Omeprazole because I read that continuous use isnt recommended.

As I said it is only occasionally when I get reflux problems.

by David Fitz (Jul 31)

Why did you stop taking omeprazole? Imatinib is the only TKI that you can take with a proton pump inhibitor without interaction.
David.

by Nimbus2 (Jul 31)

I take dasatinib 100mg. My lansoprazole is strictly limited to 30mg. I am also prescribed Gaviscon Advance (available in the UK). It has taken many years to get my GORD under control. I have worked
Category: Drug-food interactions

Replies: 8

Last updated: 9 August 2023
Danmason11 on 3 August 2023

Category: Reproductive health

Replies: 1

Last updated: 6 August 2023

TKI impact on male fertility
by David Fitz (Aug 6)

Have a search for videos from Prof Apperley at CML Horizons conferences where she discusses fertility. From memory, TKIs don’t seem to have any impact on sperm counts or motility but maybe there’s

by Danmason11 (Aug 3)

Hi all
Is anyone aware of any research or evidence that suggests Imatinib (or any TKI) has an impact on male factor fertility? My fiancée and I are planning a cycle of IVF and I can’t seem to find
Category: Reproductive health

Replies: 1

Last updated: 6 August 2023
sandy craine on 2 August 2023

Category: Treating CML

Replies: 0

Last updated: 2 August 2023

iCMLf publications
by sandy craine (Aug 2)

Please find below a selection of interesting articles on CML from peer-reviewed journals. Recent publications include:
Clinical papers
Immune modulation in chronic myeloid leukemia patients treated
Category: Treating CML

Replies: 0

Last updated: 2 August 2023
Diane CW on 1 August 2023

Category: Uncategorised

Replies: 2

Last updated: 2 August 2023

Undetected
by Buzzm1 (Aug 2)

Hi Diane; Congratulations on your first undetected result; especially after five and a half years.
Your doctor will likely want to see at least a few more undetected results before initiating

by scuba (Aug 1)

Congratulations!
You could certainly consider a dose reduction, but if you are not experiencing side effects, consider staying the course for one more test to confirm your new status. After that,

by Diane CW (Aug 1)

Hi everyone
Just wanted to share a personal milestone with you all. After diagnosis five and a half years ago, I have just had an ‘undetected’ blood result!!!

I know it’s only one but it
Category: Uncategorised

Replies: 2

Last updated: 2 August 2023
alexmcpee on 13 July 2023

Category: Uncategorised

Replies: 6

Last updated: 28 July 2023

Joint pain - sciatica?
by alexmcpee (Jul 28)

Hey Pete mate good to hear from you and hope you worked out the diabetes scare?
Yeah my question was more had anyone experienced it much later in treatment because until now it’s not really been an

by Dustylloyd (Jul 14)

Hi Alex,
In fairness to the medication ( Nilotinib) it does state muscle and joint pain are common, but like you I’ve respected the benefits of the medication, it’s a lifesaver, but there’s got to

by Felix (Jul 14)

Hi Alex,yes plenty of joint pain ,I am 6 years in .Just had both my hips xrayed left one is worse than right one ,shoulder and neck pain ,back pain is worse .I have to take Zapain to keep going .

by Polineczka (Jul 14)

Hi, I also take Tasigna 3 years and my joints hurt, especially the left hip.
Category: Uncategorised

Replies: 6

Last updated: 28 July 2023
scuba on 4 May 2018

Category: Uncategorised

Replies: 84

Last updated: 26 July 2023

Could Fasting + TKI 'cure' CML?
by igennem (Jul 26)

jeeeez those are like 60 USD in my country

actually the 1000 MG and 120 pcs is 100 USD.

by scuba (Jul 26)

Curcumin is the active ingredient in turmeric. Turmeric is a root and used to spice up food. Curcumin is what makes it yellow.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4686230/
I take Sabinsa's

by igennem (Jul 26)

Scuba,
I have consulted with my doctor and he is ok taking turmeric and/or curcumin extract with nilotinib.

So I will try if it has any nice effect on my BCR-ABL levels.
When you say you take

by igennem (Jul 20)

what mess?
Category: Uncategorised

Replies: 84

Last updated: 26 July 2023
Alan Locke on 23 July 2023

Category: Uncategorised

Replies: 0

Last updated: 23 July 2023

Eczema on the genitals
by Alan Locke (Jul 23)

I have read threads on this forum, where members have experienced the side effect of eczema in a sensitive area of their body.

I have been diagnosed with eczema on my testicles and penis. The
Category: Uncategorised

Replies: 0

Last updated: 23 July 2023