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scuba on 15 April 2019

Category: Treating CML

Replies: 13

Last updated: 3 May 2019

Fasting impact on immune system
by Damian Dl system (May 3)

Totally, I think I went into ketosis, I did not have to check it, but if I had strong breath with extreme tiredness and urinated a lot, I think if I was not there or I was very close. The next I

by scuba (May 3)

Hi Damian,
First time is tough. What helps is drinking Himalayan salt water (1/4 teaspoon in an 8 oz. glass) first thing in the morning and then again in the afternoon. All other times need to drink

by Damian Dl system (May 3)

Hello, first attempt of fasting failed, I only achieve 48 hours of fasting, I hope it works for something, I felt very tired this morning and I had no strength and some dizziness, I had to suspend

by scuba (Apr 28)

Great link - here is an additional one cited in the article:
https://blog.terapiametabolica.com/rehabilitacion-metabolica
There is no doubt in my mind that fasting coupled with an alternating
Category: Treating CML

Replies: 13

Last updated: 3 May 2019
Ontasigna on 29 April 2019

Category: Treating CML

Replies: 5

Last updated: 30 April 2019

Spleen still enlarged after 4months
by David Fitz (Apr 30)

Spleen size is best seen by ultrasound, but a good clinician with a well placed finger can tell a lot just by prodding.
If your bloods are otherwise good, your spleen should reduce in size

by Ontasigna (Apr 30)

Thanks David. I started feeling discomfort again below left lower rib cage. Worried if spleen started to increase.
Is keeping a tab on wbc good enough to monitor spleen?

by David Fitz (Apr 29)

My spleen was 14cm palpable at diagnosis, and looking back at my notes it took a good month before it retreated back into the rib area. I don't have any further notes as to how long it actually

by Ontasigna (Apr 29)

My spleen @ dx was 22 cm and on Feb 22(usg) it was 14.4 cm as of today it's 13.6cm.
Ideally, I was hoping it to be @normal size. I have been checking WBC count every 2 weeks they are well within
Category: Treating CML

Replies: 5

Last updated: 30 April 2019
Mike B on 9 April 2019

Category: Treating CML

Replies: 11

Last updated: 30 April 2019

MMR Finally at 29 months
by RC Kirk (Apr 30)

Hi Eric, If I'm reading the study correctly, then only two people weren't able to make it to the end of the study. I think the staggered entry of people into the study makes it

by Eric Dril (Apr 27)

The study results are very reassuring. But isnt most international guidelines (except for MDACC's inhouse guideline) still saying 100mg. Also still a little cautious that the study you quoted only

by Diane CW (Apr 14)

Yes I think mutation testing was done with my second bone marrow biopsy last May. But I was never told the result and I didn’t ask (I think I was still in shock at the time and didn’t

by Job Guerra (Apr 11)

Diane - Did you ever have mutation testing done? It could be possible that you have a mutation that would respond favorably to Dasatinib. I think the SCT conversation is because it takes
Category: Treating CML

Replies: 11

Last updated: 30 April 2019
Ontasigna on 17 April 2019

Category: Treating CML

Replies: 12

Last updated: 24 April 2019

Nilotnib and PPI
by Felix (Apr 24)

Hi, it is ok to take certain Antibiotics but beware they can make your BCR- ABL rise.Mine did even tho my doctor said it wouldn't .Think my Doc panicked and sent me to a more specialist

by Ontasigna (Apr 24)

Great!! Thanks so much!

by David Fitz (Apr 23)

In general, yes antibiotics are usually absolutely fine. But there are a small set of them that are not - e.g. erythromycin and clarithromycin. These are called macrolides and you generally identify

by Ontasigna (Apr 23)

Is it ok to take antibiotics while on nilotnib?
Thanks for sharing the knowledge. It helps a lot.
Category: Treating CML

Replies: 12

Last updated: 24 April 2019
Adelaide Gomes on 14 April 2019

Category: Treating CML

Replies: 1

Last updated: 15 April 2019

Heart Issues
by David Fitz (Apr 15)

Hi Adelaide,
Are your doctors certain this has happened since your were diagnosed? Or, is it possible you've had this left atrium enlargement for some time before?
It's not an issue I have

by Adelaide Gomes (Apr 14)

Hi Everyone, I am a CML patient, and was diagnosed with left atrium enlargement. Does anyone here have heart issues? I have taken Gleevec 300 mg. for 5 years, our miracle drug. Is this reversible?
Category: Treating CML

Replies: 1

Last updated: 15 April 2019
Ontasigna on 12 April 2019

Category: Treating CML

Replies: 2

Last updated: 12 April 2019

Nilotnib & Lemon
by Ontasigna (Apr 12)

Thanks David!! I mean not full glass of lemon juice (90% water and 10% lemon).
Some studies say - to avoid citrus fruits while on Nilotnib. Has any one tried lemon?

by David Fitz (Apr 12)

Yes, absolutely fine.
My question would be why you would want to in the first place!! 🤢 I don't think I could stomach a glass of lemon juice!
David.

by Ontasigna (Apr 12)

Hi all,
Is it ok to drink Lemon juice while on Nilotnib?
Kindly suggest.
Category: Treating CML

Replies: 2

Last updated: 12 April 2019
Vijay Kumar Verma on 5 April 2019

Category: Treating CML

Replies: 5

Last updated: 7 April 2019

PCR@21 MONTHS
by Vijay Kumar Verma (Apr 7)

Side effect:- fatigue,swelling (moderate).sometime calf muscle stiffness with high decree of pain.6/4/2019 cbc report:-hg 11.20,rbc 3.30,pcv 32.50,mcv 98.50,mch 33.90,mchc 34.40,rdw 15.50,absolute

by Vijay Kumar Verma (Apr 6)

IRMA mutation test jan 2019,no mutation detected.

by Job Guerra (Apr 5)

Have you had mutation testing? Just wondering because our numbers are similar and I switched to Nilotinib from Dasatinib. Not a lot of research for 2nd gen TKI to another 2nd gen as most people

by Vijay Kumar Verma (Apr 5)

Next visit on 8th april.i was on nilotinib for 9 months, from june 2017 to feb 2018.3rd month pcr was 4.15%,6th month pcr was 1.77%,12th month pcr was 1.108%,18th pcr 1.016%, CML CP
Category: Treating CML

Replies: 5

Last updated: 7 April 2019
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