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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
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
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
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
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