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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
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
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