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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Harriet on 27 February 2019

Category: Getting help

Replies: 22

Last updated: 12 March 2019

Tumeric/curcumin
by scuba (Mar 12)

I buy the formulation - Curcumin C3 complex with bioperine - 1 gram caplets. It's the formulation used in clinical studies.
There are several manufacturers. Do an on-line search and usually you

by jriccoboni (Mar 11)

Hey Scuba what brand of tumeric/curcumin do you take? I think I am finally going to give it a try.

by sorin real (Mar 8)

Two problems with the turmeric powder that your doctor recommended :

1. Turmeric curcumin content is 2-6%.

Do the math yourself, how many dozens of turmeric spoons do you have to take

by scuba (Mar 8)

Yes.
https://nutritionfacts.org/2015/02/05/why-pepper-boosts-turmeric-blood-l...
Category: Getting help

Replies: 22

Last updated: 12 March 2019
Gagan Bansal on 11 March 2019

Category: Blood tests

Replies: 2

Last updated: 11 March 2019

Understanding BCR-ABL1 Quantitative Gene Fusion Analysis
by scuba (Mar 11)

... it also means his father will never die from CML. His results are in the 'noise' of the test - almost indistinguishable from "undetected".

by David Fitz (Mar 11)

Hi,
You can read our PCR Primer for Patients, which will help you learn about PCR tests and how to interpret them.
https://www.cmlsupport.org.uk/node/20097
Your fathers results are very good. Both

by Gagan Bansal (Mar 11)

Hi All,
I need to understand BCR-ABL1 Quantitative Gene Fusion Analysis.
My father got it tested it three time over last three years but i dont understand the parameters defined.
Can some one
Category: Blood tests

Replies: 2

Last updated: 11 March 2019
ponce71 on 8 March 2019

Category: Uncategorised

Replies: 5

Last updated: 11 March 2019

Anyone with these symptoms? Behavioural changes with gleevec?
by David Fitz (Mar 11)

And nothing else with it? Even supplements?
If just imatinib / Gleevec then as you probably have read, depression is a known but unusual side effect. From the small bits of scientific information

by ponce71 (Mar 11)

Tanya thank you for sharing. Hopefully, in this forum, we can learn more from others about the subject and be able to understand the possible changes.
Thanks :)

by ponce71 (Mar 11)

gleevec

by Tanya Cuffe (Mar 9)

Have been on Glieevev for 1 year and half.Have become deeply depressed (as it also put me into early menopause),as well as having changed my former bubbly personality into a somewhat depressed
Category: Uncategorised

Replies: 5

Last updated: 11 March 2019
Phuong Phuong on 10 March 2019

Category: Reproductive health

Replies: 3

Last updated: 11 March 2019

CML and Sperm quality
by Phuong Phuong (Mar 11)

Thanks David and Kirk. The info is so optimistic for male patients.
it is said that the sperm morphology is hard to be improved. We are considering to see doctor for man issue after several months

by David Fitz (Mar 10)

My sperm was "banked" back when I was diagnosed. I don't have any statistics to hand, but there were no particular concerns about quality and I wasn't told that CML could affect it

by RC Kirk (Mar 10)

I don't have any personal experience. My youngest is almost 20 and I started Gleevec in 2012.
Here is a quote from a research study: Impact of Imatinib on the Fertility of Male

by Phuong Phuong (Mar 10)

My boyfriend was diagnosed in may 2018 with cml. He has just got the semen analysis which shows the mobility progressive is 11% (normal is >32%); morphology is 2% ( normal is >4%). Other
Category: Reproductive health

Replies: 3

Last updated: 11 March 2019
Phuong Phuong on 23 February 2019

Category: Blood tests

Replies: 3

Last updated: 11 March 2019

Red blood cell count has been falling down
by Phuong Phuong (Mar 11)

Hi Scuba
How is your breathing? My boyfriend is sufferring shortness of breath that makes me so worried, especially at night. What should he do? Will the breathing come to normal over the time?

by Phuong Phuong (Feb 24)

Thanks Scuba, I feel much relieved. His hemoglobin number is 133, that means near normal.
His doctor also said not very many patients get that such early respond and wait for the test on June to

by scuba (Feb 23)

CML drugs can cause minor myelosuppression (blood counts - particularly platelets, neutrophils and red blood cells). This is normal for many patients. My RBC level, for example, is a near constant 3

by Phuong Phuong (Feb 23)

Hi everyone
please give me advice for red blood cell count falling down:
May 2018(At diagnosis): 3.15
Sep 2018 (after 3 months on Imatinib): 4.95
Dec 2018: 4.59
Jan 2019: 4.23
Feb 2019: 4.15
My
Category: Blood tests

Replies: 3

Last updated: 11 March 2019
AF on 9 March 2019

Category: Treating CML

Replies: 5

Last updated: 11 March 2019

Sprycel Reduction to 20mg After 15 Months
by AF (Mar 11)

Thanks for the reassuring words, Scuba. We will test that option with my husband’s hematologist.

by RC Kirk (Mar 10)

I've seen advice that recommends reducing dose six weeks before your next PCR test as that provides timely feedback of the effect of the reduction.

by jaideepdoc (Mar 10)

hi
I have been diagnosed with CML in Dec 2017 and have been on complete molecular remission since March 2018. My doctors insist on continuing on 100 mg spycel daily. i have been reading

by scuba (Mar 10)

No need to compromise.
He has had an OUTSTANDING response. Your intuition of dropping to 20 mg is smart.
The lower the dose, that works, the better when it comes to sprycel. His CML is getting
Category: Treating CML

Replies: 5

Last updated: 11 March 2019
jriccoboni on 10 March 2019

Category: Children & young people

Replies: 5

Last updated: 11 March 2019

6 month pcr
by Tbrand (Mar 11)

I stayed at .2 to .7 at 6 thru 11 month and .02 at 12 month. Same or less since. Diagnosed 1/1/2016.

by RC Kirk (Mar 10)

Yes. https://www.cmlsupport.org.uk/article/bcr-abl1-levels-increase-periphera...
"The BCR-ABL1 transcript level increased significantly following exercise"
Here is a link to the full

by jriccoboni (Mar 10)

Can working out before a blood draw raise your PCR? I am very active and ran a 5 k the morning of my draw.

by jriccoboni (Mar 10)

thank you for the quick response that makes me feel better. Hope the TFR continues to go well.
Category: Children & young people

Replies: 5

Last updated: 11 March 2019
Mike B on 13 February 2018

Category: Treating CML

Replies: 10

Last updated: 10 March 2019

Switch TKI thoughts?
by Nimbus2 (Mar 10)

Unusually, for Internet forums, this forum has an excellent search engine (whether I use the inbuilt search engine or raw Google). These historic postings can be very helpful.
I seem to be following

by Mike B (Feb 15)

Thank you all for the input. After a very long discussion we have gone to a trial of 800 mg dosage. We will check for toxicity in a few weeks and a PCR check in 6 weeks and again in 3 months. She

by AlastairC (Feb 15)

Mike, My reduction on 400mg was similar after diagnosis (11 years ago!), and extended by a period on 200mg as my chronic low wbc worried my Consultant. Then boom at 18 months I went from about .7%

by nigel (Feb 15)

Hi Mike, my results were similar to your, perhaps a little slower, I also have no side effects off Imatinib, and did consider changing TKI, but did not. It took me over 18 months to get to MMR, back
Category: Treating CML

Replies: 10

Last updated: 10 March 2019
Bill Miller on 20 February 2019

Category: Treating CML

Replies: 23

Last updated: 11 April 2019

At an early crossroads, would love your thoughts
by Bill Miller (Mar 10)

Thanks Gitel and Alastair. I am grateful for the kindness. I’ll try to share more information as I go through a tough stretch over these coming months.

by AlastairC (Mar 9)

Bill, I'me very sorry to hear this, and I'm afraid your blast % is well outside my experience, and I think the experience of most of us. The further tests which you describe sound

by Gitel (Mar 9)

I was diagnosed at, and use Mayo in Rochester. The great advantage is that the physicians work in teams and consult, so you never have to worry if one person is missing something. Their hospitals

by Bill Miller (Mar 9)

Shortly after finding about the blasts I was given a unit each of platelets and blood. My numbers were so critically low (9 and 7.4 respectively). While doing that my Mayo Clinic hematologist called
Category: Treating CML

Replies: 23

Last updated: 11 April 2019
donnanally on 27 February 2019

Category: Uncategorised

Replies: 4

Last updated: 9 March 2019

10 mg Sprycel?
by donnanally (Mar 9)

Thanks! I take 400mg of magnesium every night and have for years. I take Vital Plan's Prevention Plus which has lots of vitamins and 200mcg of B12 and another 100mg of magnesium.

by scuba (Mar 8)

Consider adding some magnesium to your diet (I take supplements) for general muscle aches and pains and for good sleep. I also take a B+ vitamin along with extra B12 now and then when I am feeling

by donnanally (Mar 8)

Hi! Thanks for responding! I asked if he could lower it from 50mg to 20mg since my numbers were so good and had been good from the beginning. My numbers continued to stay low so he

by scuba (Feb 27)

You should stay on 20 mg until your PCR falls below 0.01% (M.D. Anderson scale) at a minimum. And remain on it for two more years before trying to stop altogether. Interesting they lowered your dose
Category: Uncategorised

Replies: 4

Last updated: 9 March 2019
cmljax on 3 March 2019

Category: Uncategorised

Replies: 5

Last updated: 9 March 2019

Heart Arrhythmia
by cmljax (Mar 9)

Thnaks for the additional thought Bill. My HGB has been between 15 - 16 for over 2 years now. It did drop to 13 once during early treatment in late 2016, but onyl stayed there briefly.

by Bill Miller (Mar 8)

Another thing to consider is anemia. Over the past few weeks I’ve dropped from 11.7 into the 10s, then 9s, then 8s, and now 7s for HGB. When I was in the 10s and 11s I was usually not having

by cmljax (Mar 6)

Thanks Bill and RC: Update after being on Metroprolol for a week now, the quantity of PAC's/PVC's had diminished. but I don't know if it's the new medicine or just the "normal

by Bill Miller (Mar 5)

I've had arrhythmia issues before, during, and after Sprycel. I was on beta blockers 3 years before my CML diagnosis, although I now wonder what was going on in my blood back then. After about 4
Category: Uncategorised

Replies: 5

Last updated: 9 March 2019
scuba on 6 March 2019

Category: Uncategorised

Replies: 16

Last updated: 9 March 2019

Fasting 2019
by scuba (Mar 9)

The only liver cleanse I know of is what you eat or don't eat that is natural. I don't know anything about liver cleanse kits. Real food or zero food is my approach. Listen to your body when

by donnanally (Mar 8)

Hi Scuba! I tried a 3 day water fast about a month ago. On day 3, I didn't have the energy to raise my hands over my head to wash my hair and was extremely out of breath. I

by scuba (Mar 8)

Wanted to pass this along ...
https://news.harvard.edu/gazette/story/2019/02/exercise-fasting-shown-to...
Exercise, fasting help cells shed defective proteins

by scuba (Mar 8)

Won't continue past day 3 - no need. Start off with an orange (get some potassium) to 'break' the fast and some almonds. Wait several hours until later in the day and resume eating
Category: Uncategorised

Replies: 16

Last updated: 9 March 2019
kate169 on 6 May 2010

Category: Uncategorised

Replies: 7

Last updated: 8 March 2019

Behavioural changes with gleevec?
by ponce71 (Mar 8)

Hello Paul
How are you doing today? My son is been fitting CML for 15 years since he was 13.

by sandy craine (Dec 6)

It might be that you mother is suffering extreme menopausal symptoms?

Sandy

by anni (Dec 1)

My mom was diagnosed with CML seven years ago.,she is now 55 years old...she immediately started Gleevec treatment but after four years she had to stop coz of fluid in heart....she continued

by Paul C (May 8)

I was on Glivec for about 5 years and noticed that I was getting low moods and mood swings (which my wife kindly pointed out!) which got me to a point where I was looking for the nearest
Category: Uncategorised

Replies: 7

Last updated: 8 March 2019
Harriet on 26 February 2019

Category: Other conditions

Replies: 11

Last updated: 8 March 2019

Diagnosed Nov 2017 cml ph
by bendicco (Mar 8)

Hi I sent you an email but maybe I got ur address wrong. I am
bendiccoj@gmail. com

by Harriet (Mar 7)

hi Bendicco please send me your private mail again i cannot find it.

by Harriet (Mar 7)

Hi Bendicco,

Yes I have been reading about this and wondering, I took curcumin some years back before CML my chiropractor swears by it,but to be honest I never really felt anything better or

by bendicco (Mar 5)

Hi Harriet wondering what you think about all this back and forth conversation about Curcumin?
Category: Other conditions

Replies: 11

Last updated: 8 March 2019
Tanya Cuffe on 8 March 2019

Category: Uncategorised

Replies: 0

Last updated: 8 March 2019

HRT when on treatment?
by Tanya Cuffe (Mar 8)

Hi again!this ones for the woman on the group.Firstly I could not tolerate Sprycel so back on 300 mg Glivec and hope to God it’s doing what it needs to...Question is this,does anyone else take
Category: Uncategorised

Replies: 0

Last updated: 8 March 2019
Debbie Viggiano on 5 March 2019

Category: Drug-food interactions

Replies: 2

Last updated: 8 March 2019

Tasigna and dermal fillers
by Tanya Cuffe (Mar 8)

Hi there!Im on Glivec and asked my haematologist about fillers and she said they are all ok!Not that I have gotten round to getting it yet but it’s still good to know!Check with your doc first

by kali (Mar 6)

I have had Radiesse once a year for the last four years while on Sprycel with no issues. I can’t speak for Tasignia since I haven’t taken that drug.
Hope that helps with your

by Debbie Viggiano (Mar 5)

Hi, I’m in major molecular remission and thrilled. Still on Tasigna though and no suggestion to stop yet. Whilst I am so grateful for the joy of life this therapy brings, the downside is that
Category: Drug-food interactions

Replies: 2

Last updated: 8 March 2019
onekayaker on 7 March 2019

Category: Uncategorised

Replies: 4

Last updated: 7 March 2019

Has anyone heard about Nilotinib helping people with Parkinson's and Lewy body dementia
by kat73 (Mar 7)

John, I'm so sorry about your partner. What a hard road. My father-in-law is declining with what I guess is Alzheimer's. My in-laws have elected not to know, so we don'

by johnw1001 (Mar 7)

Hi All,
The research is currently being undertaken by Georgetown Medical University ,Washington DC and currently they are in mid trials of administering a dose (less than for CML?) of nilotinib to

by Felix (Mar 7)

Hi David ,I know it's not a TKI ,but I recommended Turmeric to my Sister for inflammation because of joint pain ,and to her surprise it has cleared up her Psoriasis which she has had for years .

by David Fitz (Mar 7)

There's a huge amount of research into what else TKIs can be effective for, and what things they can be mixed with for better results.
I think it goes to show that while the marketing
Category: Uncategorised

Replies: 4

Last updated: 7 March 2019
Ontasigna on 6 March 2019

Category: Treating CML

Replies: 9

Last updated: 7 March 2019

Pls help : Spleen : discomfort
by pc (Mar 7)

Don't see the blood reports..immediately report to a Hameotologist...anything extramedullary is not a good sign...

by Ontasigna (Mar 7)

ANC was always in the range of 2.5 since i started nilotnib. Almost 65 days now. Todays report shows increase to 4.52 for the first time.

by AlastairC (Mar 7)

Normal range for neutrophils is between 2 and 7.5, so both are in range. What was time between these readings? It may well be your WBC and neutrophils were lowered (myelosuppression as David talked

by Ontasigna (Mar 7)

Sure. I will keep counts watching. One more thing i noticided is absolute neutrophill count.
ANC was 2.56 on 3rd march

Today it is 4.52.
Is this normal?
Category: Treating CML

Replies: 9

Last updated: 7 March 2019
AeRoSpaceman on 7 March 2019

Category: Treating CML

Replies: 1

Last updated: 7 March 2019

Help understanding results
by David Fitz (Mar 7)

Hi Aero,
Those numbers look excellent. They show "<0.0032" which is their way of saying that the result is lower than MR4.5. That's a great place to be.
0.1%, whcih is MMR or MR3 is

by AeRoSpaceman (Mar 7)

Hello All. New member here. Was diagnosed in July 2017. I am still having a hard time figuring out what my results of my BCR-ABL test mean even after reading thru the guide(and Yes I will read thru
Category: Treating CML

Replies: 1

Last updated: 7 March 2019
Parklife on 25 October 2014

Category: Side effects

Replies: 25

Last updated: 7 March 2019

Joint and Muscle pain?
by scuba (Mar 7)

Take 400 mg magnesium citrate or magnesium taurate (avoid magnesium oxide) - split 200 at night before bed and 200 in the morning.
Good chance your muscle cramps will disappear. You'll know the

by bendicco (Mar 7)

My oncologist agreed that muscle cramps in my calves and fingers can be from the Gleevec.

by Philiptibbs (Mar 6)

I feel your pain . I was on Tasigna but could not take the rashes and itchyness all the time. I went back on Gleevec and the bone pain and joint pain has returned so bad and everytime I get hurt it

by LouiseS (May 17)

Hi Harriet
so sorry to hear about your pain. Restarting see if your doctor will agree to 50 mg instead of a 100. Def less side effects and hopefully just as effective with the CML. What helped
Category: Side effects

Replies: 25

Last updated: 7 March 2019