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Sarah63 on 7 April 2019

Category: Treating CML

Replies: 0

Last updated: 7 April 2019

What ever happened to Fish Oil Trials?
by Sarah63 (Apr 7)

Anyone here familiar with the preclinical trials on fish oil and derivatives that cured leukemia in mice by killing the Leukemia Stem Cells?
Category: Treating CML

Replies: 0

Last updated: 7 April 2019
bendicco on 1 April 2019

Category: Treating CML

Replies: 20

Last updated: 6 April 2019

And the anxiety builds AGAIN!
by cmljax (Apr 6)

YAY!!!! As Scuba would say, you are not going to die from CML - that is a tremendous number. next stop MR4.5 or better and probably as soon as the next PCR, which will still make you anxious :).

by Harriet (Apr 5)

yes it feels good,but the brain never stops he mentioned a slight elevation in s-albumin level and s-alat plus kalsium,but he said it was nothing to worry about,but the brain latches on to these

by bendicco (Apr 4)

So happy Harriet!!!!

by kat73 (Apr 4)

Great news, Harriett! Onward and downward!
Category: Treating CML

Replies: 20

Last updated: 6 April 2019
muhammedmahmoud on 24 March 2019

Category: Treating CML

Replies: 5

Last updated: 25 March 2019

Tasigna vs. SPRYCEL?
by scuba (Mar 25)

John - nice summary.
Just reminds me of why I want to get off these toxic man made chemicals that are poison to our bodies - that just so happen - saved our lives.
Our goal - all of us - is to get

by johnw1001 (Mar 25)

Hi there,
One in 5 chance of pleural effusions with dasatinib and interacts with other drugs such as aspirin to cause bleeding etc.Professor Jane Apperley at Hammersmith in a blog suggested that if

by Naj (Mar 25)

Although I am taking Tasigna..I agree with David...Sprycel is much more convenient.
regards

Naj

by muhammedmahmoud (Mar 24)

Thank you.
Category: Treating CML

Replies: 5

Last updated: 25 March 2019
Ontasigna on 16 March 2019

Category: Treating CML

Replies: 6

Last updated: 18 March 2019

HLA typing : SCT
by scuba (Mar 18)

Davids reference on HLA is good and explains it very well.
Given your blast percentage (borderline AP), you should consider switching to dasatinib right away. Nilotinib (tasigna) works similar to

by Ontasigna (Mar 18)

Thanks David. I understand it is pretty complex subject.
Another doubt - I had, i got my Bone marrow slides reviewed at other hospital. The report shows mine as CML-CP (8% BLAST). However my current

by David Fitz (Mar 18)

I am no expert in HLA matching. I know that there is a 1/4 chance of a sibling being a full HLA match (my sister is, I am fortunate).
HLA matching is pretty complicated. Testing is usually

by Ontasigna (Mar 17)

Hi David/Sandy/Scuba. Appreciate your inputs
Category: Treating CML

Replies: 6

Last updated: 18 March 2019
r06ue1 on 27 February 2019

Category: Treating CML

Replies: 2

Last updated: 18 March 2019

CML Drug Prices in the US - Update for 2019
by r06ue1 (Mar 18)

Basically what we have is a cartel, owned by a few wealthy families who are siphoning money from everyone else like leeches.

by scuba (Feb 27)

It is an outrage and this is what is truly wrong with the government-pharmaceutical industry complex. I am all for a new discovery benefiting from patent protection in order to cover the R&D

by r06ue1 (Feb 27)

Insurance company paid $7422.98 to Teva (Israeli company) for the generic brand of Imatinib.

This is a complete outrage, everyone that has private insurance in America should be
Category: Treating CML

Replies: 2

Last updated: 18 March 2019
Ontasigna on 16 March 2019

Category: Treating CML

Replies: 0

Last updated: 16 March 2019

HLA typing : SCT
by Ontasigna (Mar 16)

Hi all,
I got my HLA typing report with my sibling as Donor.
The report shows 6/10 match. Is this an good match for sct?
Category: Treating CML

Replies: 0

Last updated: 16 March 2019
stefanolucas on 7 March 2019

Category: Treating CML

Replies: 7

Last updated: 13 March 2019

Imatinib&nilotinib failure ! Please advice !
by stefanolucas (Mar 13)

Thank you so much !

by Ontasigna (Mar 13)

Thanks David!

by AnnieKennedy (Mar 13)

Hi - I don't often check or post on here now as I was diagnosed over fifteen years ago. I know that people have high expectations of a rapid response to TKIs and that this is generally the case

by stefanolucas (Mar 12)

Hi David ,
thanks for your response and Yes you did understand good , she doesn’t has any mutations but the Imatinib and Nilotinib didn’t brought her below from 20% BCR-ABL in fast 9
Category: Treating CML

Replies: 7

Last updated: 13 March 2019
Ontasigna on 11 March 2019

Category: Treating CML

Replies: 1

Last updated: 12 March 2019

Tasigna : severe Joint, bone and muscle pain
by johnw1001 (Mar 12)

Hello,
I do not have experience of Tasigna but have been on long term use of imatinib and suffer from the symptoms that you describe;many of the tki s especially if you are on a high dose will

by Ontasigna (Mar 11)

Hi there,
It's been a week I started to get severe joint,bone and muscle pain. I have been on Tasigna 800mg since 21/2 months.
Is this side effect of Tasigna? Will it subside?
Category: Treating CML

Replies: 1

Last updated: 12 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
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
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
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
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
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
johnw1001 on 26 February 2019

Category: Treating CML

Replies: 1

Last updated: 27 February 2019

ASH 2018 San Diego-whats new in CML?
by kali (Feb 27)

Thank you for this post about the ASH conference. It is great to have this summary of the main highlights.

I saw videos by Dr. Savage from Vanderbilt and from Dr. Mauro from Sloan Kettering

by johnw1001 (Feb 26)

Hi All,
I have been looking to see if anything new or interesting came out of the proceedings of the American Society of Hematologists held in San Diego last December and came across a video online
Category: Treating CML

Replies: 1

Last updated: 27 February 2019
Ontasigna on 19 February 2019

Category: Treating CML

Replies: 2

Last updated: 24 February 2019

Symptoms of Pleural effusion
by Ontasigna (Feb 24)

Hi Sarah,
Had been to Onc on Friday. Went through Blood test, LFT, Ultrasound and chest x-ray.
Ulteasound showed an reduces spleen of 14 cm (22 cm @dx). No Pleural effusion, lever and pancreas

by Sarah63 (Feb 24)

Any news or update? How you doing? Did you tell your doc?

by Ontasigna (Feb 19)

Hi all,
I have tightness on left lower abdomen since 4 days.
Worrying if it can be Pleural effusion. Please help me with symptoms of pleural effusion.
Apart from tightness/fullness i dont have any
Category: Treating CML

Replies: 2

Last updated: 24 February 2019
Ros77q on 18 February 2019

Category: Treating CML

Replies: 10

Last updated: 21 February 2019

Stopping dasatinib
by scuba (Feb 21)

Best time is morning to mid day. Avoid taking in the evening as it may interfere with sleep (which makes sense since we evolved to make vitamin D (skin) when the sun is shining).
I wish you all the

by Ros77q (Feb 21)

Thanks scuba
what Would be the best time to take vitamin d3 supplements and with what food. I usually take dasatinib around 6 pm.

by Ros77q (Feb 21)

Hi scuba
when i did my blood test it showed 24% blast Doctor is planning me to ponatinib. Currently im on dasatinib 100 mg. I am so confused right now. I am having my bmt soon.

by scuba (Feb 20)

What is your blast cell percentage currently? As long as your blast cell count is less than 5% you have some time to work through this. Bone marrow transplant is a last resort before trying other
Category: Treating CML

Replies: 10

Last updated: 21 February 2019