TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

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AlastairC on 6 October 2017

Category: Treating CML

Replies: 52

Last updated: 6 March 2019

Imatinib Dose Reduction Starts
by kali (Mar 6)

Alastair,
That is great news! I am hoping for continued success with your plans!

by Ray Sell (Mar 6)

Such great news. I'm elated for you. Fingers crossed here as well

by Bill Miller (Mar 6)

That's awesome! Cheering for continued success : )

by kat73 (Mar 6)

I ditto Chrissie and Scuba, Alistair. On the edge of my seat!
Category: Treating CML

Replies: 52

Last updated: 6 March 2019
Ontasigna on 6 March 2019

Category: Treating CML

Replies: 6

Last updated: 6 March 2019

Good read - Turmeric causing Iron deficiency.
by sorin real (Mar 6)

It is not possible that 6oo gm will produce a drop in iron. And you say you made a 7-month break. Repeat: it's not possible! Otherwise, we consumers of curcumin will die like flies.

I take

by Bill Miller (Mar 6)

This is interesting. Prior to my CML diagnosis in 10/2018, I was taking 600mg Turmeric Curcumin from about 1/2018-8/2018. This was strictly due to joint pains following a tough bout of pneumonia,

by scuba (Mar 6)

Additional reading - This study goes back to 2008
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2615657/
from the abstract, "These results demonstrate that curcumin has the potential to affect

by scuba (Mar 6)

Thanks for posting this. Good to be aware. Study is not definitive (need more data), but I will be sure to separate my iron supplement from Curcumin and not take them together as I have done from
Category: Treating CML

Replies: 6

Last updated: 6 March 2019
Jason Graves on 26 August 2018

Category: About CML

Replies: 19

Last updated: 6 March 2019

My wife was recently diagnosed with cml.
by bendicco (Mar 6)

Yes indeed good advice!

by kali (Mar 6)

Jason and Crystal,
Congratulations to you both on your new marriages!
Thankfully CML is very treatable with an excellent track record of good results with the TKI’s. It is reassuring to know

by Pearl (Mar 5)

I have had CML for 13 years now and have been on 400g of glivec, I am doing so well that they have reduced my medication to 300g and hopefully further after 6 months.

by cmljax (Sep 6)

My stats for CML were the odds in a given year so I mistated that it was for a lifetime. See below:
https://www.cancer.org/cancer/chronic-myeloid-leukemia/about/statistics....
the chance of getting
Category: About CML

Replies: 19

Last updated: 6 March 2019
Jason Graves on 4 March 2019

Category: Uncategorised

Replies: 10

Last updated: 6 March 2019

Help understanding?
by RC Kirk (Mar 6)

Jason, I'm listing your previous posts so that those unfamiliar with your journey can look back at what has transpired so far.
https://www.cmlsupport.org.uk/thread/12527/my-wife-was-

by RC Kirk (Mar 5)

Hello Denise,
Dasatinib usually works if imatinib hasn't. Are they going to do a mutation analysis for you?
There are a lot of variables when it comes to response to a particular TKI.

by David Fitz (Mar 5)

Hi Felix,
I switched from imatinib to dasatinib too, and also without a cytogenetic test to check for mutations. The line of reasoning my doctor and I took was that dasatinib covers the vast

by scuba (Mar 5)

I think you will be all right. Most patients where imatinib stops working, sprycel takes over and works very well. That happened to me. When imatinib failed to continue working, I was switched to
Category: Uncategorised

Replies: 10

Last updated: 6 March 2019
bendicco on 6 March 2019

Category: Drug-drug interactions

Replies: 0

Last updated: 6 March 2019

Curcumin and other meds?
by bendicco (Mar 6)

Anyone have an opinion about how to space the timing of taking Curcumin with Bioperine so that it doesn’t interfere with the absorption of Gleevec and other meds? Thanks!
Category: Drug-drug interactions

Replies: 0

Last updated: 6 March 2019
JohnFromChicago on 2 March 2019

Category: Uncategorised

Replies: 6

Last updated: 6 March 2019

Facial Edema Sprycel
by JohnFromChicago (Mar 6)

Thanks all for the replies I have an appointment with my PCP tomorrow hopefully get this figured out quickly :)

by bendicco (Mar 4)

You got it Kat, and that the Gleevec causes celluar fluid buildup has caused a 5 lb. weight gain that I cannot lose!! Oh well this is a small price to pay for staying alive!

by kat73 (Mar 4)

John - No, nothing has ever made a difference (beyond not overdoing on salty food). It is just so very, very much better on Sprycel than on imatinib that I was enormously grateful to have

by bendicco (Mar 4)

Thought I’d chime in, I have been on Imatinib for almost three years and have puffy eyelids from it. I have tried many products that claim to reduce puffiness but to no avail . It’s one
Category: Uncategorised

Replies: 6

Last updated: 6 March 2019
John J on 3 March 2019

Category: Side effects

Replies: 1

Last updated: 5 March 2019

Losarton recall
by johnw1001 (Mar 5)

I believe that just one of the many generics of Losartan has been recalled.I used to take a version of Losartan but on seeing the article by Haouala et al "Drug interactions with the tyrosine

by John J (Mar 3)

Last weeks Losarton (blood pressure) recall got me thinking. I have been taking Losarton for 2 years, I was diagnosed with CML last May, could there be a link between the two ? My Losarton is
Category: Side effects

Replies: 1

Last updated: 5 March 2019
bendicco on 5 March 2019

Category: Uncategorised

Replies: 3

Last updated: 5 March 2019

Curcumin follow up From oncology pharmacist re the articles Scuba references
by scuba (Mar 5)

Bravo Kat! Excellent summary.

by bendicco (Mar 5)

I agree

by kat73 (Mar 5)

Bendicco - Thanks for pointing this out. You will never sway proponents of supplements, particularly curcumin, from their beliefs, however. There could very well be benefits, but there

by bendicco (Mar 5)

Who do I believe? Driving me nuts!😱
This data was interesting as an early proof of concept.
Of note, this analysis is ex-vivo. Essentially this concept/theory arose from studies in a petri
Category: Uncategorised

Replies: 3

Last updated: 5 March 2019
Bill Miller on 3 March 2019

Category: Side effects

Replies: 2

Last updated: 5 March 2019

Electrolytes
by Bill Miller (Mar 5)

Thanks David. Yes, over the past 6 months I've had probably 20 EKGs. Last fall when the CML diagnosis happened, it began with tachycardia, then a- fib and a flutter. I had an SVT ablation this

by David Fitz (Mar 5)

Hi Bill,
I am absolutely no expert in this area - but I had a bit of a look around and have one line of thinking that may be worth discussing with your doctor.
Some CML drugs can cause issues with

by Bill Miller (Mar 3)

I’m curious if there’s any known connection between CML and/or TKIs with electrolytes. I’ve had fairly pronounced heart rhythm issues for over three years, which I’m sure
Category: Side effects

Replies: 2

Last updated: 5 March 2019
Ontasigna on 5 March 2019

Category: Treating CML

Replies: 1

Last updated: 5 March 2019

Symptoms of bcr abl breakdown
by David Fitz (Mar 5)

Hello,
After early symptoms of CML start to go away when you respond to your TKI (reduced spleen, perhaps vision improving, reduced / no bone pain, reversal of weight loss, no night sweats, etc. etc

by Ontasigna (Mar 5)

Hi there/experts,
Just wanted to understand if there would be any signs or symptoms that indicates bcr abl reduction/breakdown?
Many thanks
Category: Treating CML

Replies: 1

Last updated: 5 March 2019
mozart8 on 1 March 2019

Category: Drug-drug interactions

Replies: 4

Last updated: 4 March 2019

circumin and sprycel
by bendicco (Mar 4)

Thanks for the links! One common theme in the info is that Curcumin works well in drug resistant CML. My numbers are good the Gleevec seems to be responsible for that, although there is still

by scuba (Mar 4)

Your oncology pharmacists is wrong. You should ask her for scientific research, articles, links, videos that lead her to tell you such nonsense.
Curcumin ENHANCES gleevec, not the other way around:

by bendicco (Mar 4)

As I have posted at an earlier time, I have begun taking Curcumin for about a week or so and it has almost completely resolved the arthritis I have in my thumb joint. I asked my oncologist about the

by David Fitz (Mar 2)

Hi,
I did take curcumin with 100mg of dasatinib. It didn’t cause me to feel “weird” at all, but I think it did give some moderate relief with some joint pain I have. I have
Category: Drug-drug interactions

Replies: 4

Last updated: 4 March 2019
Ontasigna on 4 March 2019

Category: Treating CML

Replies: 0

Last updated: 4 March 2019

Smear report : Myelocyte and Metamyelocyte seen
by Ontasigna (Mar 4)

Hi all,
Need your suggestions asap
I got my smear report today.
There are few % of Melocytes 7% and metamyelocytes - 5%.
Is my cml progtessing to next phase?

I am on Tasigna 800 mg since 2
Category: Treating CML

Replies: 0

Last updated: 4 March 2019
Dshyam Prasad on 3 March 2019

Category: Treating CML

Replies: 1

Last updated: 3 March 2019

severe side effects of Dasatinib within 3 doses
by scuba (Mar 3)

I saw your other thread and post. It was clear that you did have good response on imatinib and only 300 mg as well. But you report developing severe leg pain. All TKI's - especially

by Dshyam Prasad (Mar 3)

hi i am shyam patient of cml since 7 years. Past 6 weeks ago as I had tremendous side effects of imatinib 300mg , my doctor told me to stop it . Recently i have gone through bcr abl test
Category: Treating CML

Replies: 1

Last updated: 3 March 2019
Dshyam Prasad on 16 February 2019

Category: Side effects

Replies: 4

Last updated: 3 March 2019

please go through my report and help me in understanding it
by Dshyam Prasad (Mar 3)

thank u so much for u r response if possible go through my next post as i had side effects of dasatinib too within 3 doses

by Dshyam Prasad (Mar 3)

thank u so much for u r response if possible go through my next post as i had side effects of dasatinib too within 3 doses

by Job Guerra (Feb 17)

Unless I misunderstood something you are saying that you went from bcr/abl 0.02% to 64% and that is not good. Is it possible that the medication was already not working when your doc told you to

by RC Kirk (Feb 16)

Hello Shyam,
There are several other tyrosine kinase inhibiting (TKI) medications that may work better for you than imatinib. Ask your doctor which one he thinks would be best for you.
Category: Side effects

Replies: 4

Last updated: 3 March 2019
saifur360 on 1 March 2019

Category: About CML

Replies: 6

Last updated: 3 March 2019

chronic myeloid leukemia
by bendicco (Mar 3)

Yes indeed! Do you take supplements and if so which and how much? Just started adding curcumin, and magnesium to my multi and probiotic and D3.

by scuba (Mar 3)

To be honest, CML saved my life.
It was only after my diagnosis that I dove head first into the science of CML and overall health. I went and had a top to bottom physical exam (not related to CML)

by bendicco (Mar 3)

It is probably one of the most frightening thing to get diagnosed with any type of cancer but as my oncologist says if you have to get one CML is the one to get! But I understand how it affects you

by saifur360 (Mar 3)

Thank you very much, for your kind information. Pray for me
Category: About CML

Replies: 6

Last updated: 3 March 2019
Rick B on 28 February 2019

Category: Uncategorised

Replies: 3

Last updated: 3 March 2019

CML/Imatinib and Rising PSA
by Rick B (Mar 3)

Thanks for the responses.

by Bill Miller (Feb 28)

My dad was diagnosed with prostate cancer about 14 years ago. He had surgery and radiation and is now cancer free, but has a lot of side effects from the radiation. He was 61 at the time, I'm 48

by David Fitz (Feb 28)

There was a study done quite a long time back to see the effect of imatimib on PSA - I guess in the hope that it could be used to manage prostate cancer.
https://www.ncbi.nlm.nih.gov/pubmed/16796694

by Rick B (Feb 28)

Just had my annual physical. PSA last year at this time was 3.6. Now it is 6.9. The annual physical last year first discovered elevated wbc and immature cells that ultimately led
Category: Uncategorised

Replies: 3

Last updated: 3 March 2019
bendicco on 2 March 2019

Category: Treating CML

Replies: 5

Last updated: 3 March 2019

Possible contraindication between Imatinib and Curcumin?
by bendicco (Mar 3)

THANK YOU Scuba!!

by scuba (Mar 2)

I have been taking and continue to take Curcumin since early in my treatment - starting with imatinib beginning in 2010 - for almost nine years. I was then changed to sprycel, first at 70 mg which

by bendicco (Mar 2)

Affect of imatinib therapy with and without turmeric powder on nitric oxide levels in chronic myeloid leukemia.
Randomized controlled trial
Ghalaut VS, et al. J Oncol Pharm Pract. 2012.

by Gitel (Mar 2)

Mayo Clinic pharmacologists told me to avoid it when on Sprycel. Gitel
Category: Treating CML

Replies: 5

Last updated: 3 March 2019
Sandra Djureholt on 28 February 2019

Category: Side effects

Replies: 6

Last updated: 2 March 2019

Side effects Imatinib / depression
by Sandra Djureholt (Mar 2)

Thank you! I will keep that in mind!
See, even if it's not the drugs then changing the drugs would still help due to the placebo effect. I'm guessing I must seem very strange to you :P

by David Fitz (Mar 2)

Sandra,
One last thing. When you stop taking imatinib, it takes about 5-7 days to “wash out” of your system (give or take). So if imatinib is causing you these problems, you’d hope

by Sandra Djureholt (Mar 1)

Thank you for your answer!
I understand why you would think I haven't processed this. Trust me I have and I'm fine with it. The CML diagnosis is not the cause of my depression and anxiety. I

by kat73 (Mar 1)

Sandra - Wise words from David. Certainly, there are multifactorial elements for depression and anxiety, not the least of which is unprocessed reaction to the diagnosis and its lifelong
Category: Side effects

Replies: 6

Last updated: 2 March 2019
bendicco on 16 February 2019

Category: Drug-food interactions

Replies: 9

Last updated: 2 March 2019

FATIGUE and supplements
by bendicco (Mar 2)

Got it thanks! I have done some research on Dr. Google(Ha) and other sites that discuss how Tumeric (curcumin) helps destroy leukemic cells along with the TKI's. If this is really true,

by sorin real (Mar 2)

I replied but I wrote the answer (excuse me, it is my mistake!) In the topic opened by Riggered on February 17 and entitled "Dasatinib and strained back muscle." Try to find it there .

I also

by bendicco (Mar 1)

Curious to know which brand of Curcumin you use, I have started Doctors Best Meriva.

by bendicco (Feb 27)

Thank you so much for your response and information! I have purchased Curcumin, magnesium asporatate, zinc which I will add to my multi vit, vit d with k2 ( could not locate with K3) and b complex.
Category: Drug-food interactions

Replies: 9

Last updated: 2 March 2019
Riggered on 17 February 2019

Category: Drug-drug interactions

Replies: 7

Last updated: 1 March 2019

Dasatinib and strained back muscle
by sorin real (Mar 1)

The problem that we have with curcumin is it stays a little in the human body and is absorbed even less. To counteract this, over the course of time, researchers invented about 8 major curcumin

by bendicco (Mar 1)

Good information, how much Curcumin do you take and how long does it take until it feels like it’s making a difference?

by sorin real (Feb 26)

I have CML and arthritis in the spine. My wife has knee arthritis.

We both use curcumin supplements for arthrosis and we both feel extraordinarily well.

Use curcumin supplements, not

by bendicco (Feb 21)

I cannot take NSAIDS because l had gastric bypass surgery in 2012. Tylenol and TKIS don’t really go well together. Recently had a bad muscle pull and my oncologist prescribed Tramadol. Works
Category: Drug-drug interactions

Replies: 7

Last updated: 1 March 2019