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Ontasigna on 12 July 2019

Category: Treating CML

Replies: 6

Last updated: 17 July 2019

Nilotnib & Electrolyte
by David Fitz (Jul 17)

Check with your doctor if you're at all concerned, but its hard to see a problem with that.

by Ontasigna (Jul 17)

occasionally. Probably once in 2 months for re-hydration.

by David Fitz (Jul 16)

Are you talking about taking them occasionally, to keep hydrated through a bout of diarrhea or something? Or more habitual usage?

by Ontasigna (Jul 16)

Yes. Like Dioralyte. I read somewhere "sodium citrate" in Dioralyte reduce Nilotnib absorption? Is that true?
Category: Treating CML

Replies: 6

Last updated: 17 July 2019
Nimbus2 on 15 July 2019

Category: Treating CML

Replies: 1

Last updated: 15 July 2019

Diagnosed young versus diagnosed old
by David Fitz (Jul 15)

Was that Gianantonio? I’ve spoken to him before and that was along the lines of his opinion.
I did chat with my haematologist about TFR in older patients, and she said that there tended

by Nimbus2 (Jul 15)

I have viewed the medical presentations for CML Horizons 2019 provided at the link below:
https://cmlsupport.org.uk/article/cml-horizons-2019-presentations-and-vi...
One of the presenters states
Category: Treating CML

Replies: 1

Last updated: 15 July 2019
Andy on 4 July 2019

Category: Treating CML

Replies: 3

Last updated: 6 July 2019

Side effect - Pain
by johnw1001 (Jul 6)

Hi Andy,
As a a long term CML patient of over 13 years and always having been on the branded Glivec I have lots of experience of musculoskeletal issues as side effects and very much emerging

by sandy craine (Jul 5)

Hi Andy,
You could try supplementing with magnesium (muscle cramps etc) to see if that helps. Mag Citrate is one of the more bio-available forms and you can also try a topical magnesium oil to see

by AlastairC (Jul 5)

Hi Andy, sorry to hear this and it does sound a bit unusual. With imatinib bone and joint pain is a common side effect when you start the medication, but for most people it gets much easier in the

by Andy (Jul 4)

Hi,
I have been on imatinib for 2 years now. And i started to have sharp pain for last 2 weeks on tendons and ligaments where there are strain while walking / running or playing. Now the pain
Category: Treating CML

Replies: 3

Last updated: 6 July 2019
Ontasigna on 5 July 2019

Category: Treating CML

Replies: 4

Last updated: 5 July 2019

Is it safe to take K2 with D3 when on Nilotnib
by scuba (Jul 5)

Key is to avoid sunburns. Sunburning is what can lead to skin cancer. Tanning is the body's way of protecting against sun burns. Studies on vitamin D protecting against skin cancer are mixed.

by Karinne (Jul 5)

On 100mg Sprycel I could not tan either. But on 50mg, I had no problem. Not that it matters (tan or no tan) but I thought that it was weird and even dangerous. People reported more skin cancer

by scuba (Jul 5)

Interestingly .... I found that when I was on Gleevec initially at diagnosis, I could not develop a tan. When I switched to sprycel and especially very low dose sprycel, I was able to tan again. I

by cmljax (Jul 5)

I take 4,000 iu's per day of D3 and have my blood levels checked every 6 months - most recent level was 63 and I'm pretty happy with that. Herre's what I take:
https://www.vitacost
Category: Treating CML

Replies: 4

Last updated: 5 July 2019
charron on 13 June 2019

Category: Treating CML

Replies: 3

Last updated: 15 June 2019

New parent with a daughter diagnosed with CML
by David Fitz (Jun 15)

Hi Charron,
It’s really important to remember that patients who are doing really well, and suffer no / little side effects (and there are a lot of them!) don’t tend to post to online

by charron (Jun 14)

Thank you will keep you posted

by VickyK. (Jun 13)

Dear Charron,

I hope all the best for your daughter!I know this feeling but trust me everything will get better!I am 31 years old diagnosed 9 months ago with CML. I started with nilotinib

by charron (Jun 13)

Hi All,
My daughter 24 was diagnosed with CML last 2 weeks ago not sick just went for a blood test for women problems. She is in Australia and is an Australian. We are still waiting on
Category: Treating CML

Replies: 3

Last updated: 15 June 2019
stefanolucas on 3 June 2019

Category: Treating CML

Replies: 4

Last updated: 5 June 2019

TP 53 mutation
by scuba (Jun 5)

Regarding Prima-1
https://academic.oup.com/biohorizons/article/doi/10.1093/biohorizons/hzv...

by Sarah63 (Jun 5)

I don’t know if this link will work, but here is information on P-53 that I have been studying over the past 6 months.

https://genomediscovery.org/2018/11/cancer-therapy-targeting

by stefanolucas (Jun 5)

Thank you scuba for your response !
i read about this TP53 mutation and i saw there exist a molecule named PRIMA-1 that can solve our problem ! Does anyone know something about this molecule ?

by scuba (Jun 3)

TP53 mutation is associated with both chronic phase and blast phase of CML. It could very well explain her early difficulty. The good news is that her CML reverted to chronic phase and is
Category: Treating CML

Replies: 4

Last updated: 5 June 2019
saifur360 on 3 June 2019

Category: Treating CML

Replies: 2

Last updated: 5 June 2019

Is it possible to turn from cml to aml?
by saifur360 (Jun 5)

Thank you

by David Fitz (Jun 3)

CML can progress to "blast crisis", which is similar to AML in many ways. But this is not that common really and usually occurs when someone has been diagnosed very late when the disease

by saifur360 (Jun 3)

My diagnosis is Chronic Myeloid Leukemia in Chronic Phase.
At first my blast was 5% but now it is 00%
My pcr is 0.033
Is it possible to turn AML or other leukemia?
Category: Treating CML

Replies: 2

Last updated: 5 June 2019
Sarah63 on 25 May 2019

Category: Treating CML

Replies: 2

Last updated: 25 May 2019

WBC low after 2 wk break from sprycel
by Job Guerra (May 25)

Apologies about Mayo clinic I was thinking of another thread. Still same comment regarding the rest though.

by Job Guerra (May 25)

Sarah - I'm not sure how long it takes for WBC to rebound/start climbing again after no TKI but I can say that many of my WBC have come in at 2.9 or around there and I continue taking them without

by Sarah63 (May 25)

It worries me that my WBC count remains low (3.3), after 2 week break from Sprycel. HGB also low (11.8) but RBC and PLT good. Why isn’ WBC bouncing back? Also, I still feel
Category: Treating CML

Replies: 2

Last updated: 25 May 2019
Sarah63 on 23 May 2019

Category: Treating CML

Replies: 5

Last updated: 24 May 2019

Any problem cutting tablets?
by RC Kirk (May 24)

I concur with David and Kat. I've done it and lived to tell about it.
I've even quartered 100mg tablets, but it takes patience to get them lined up just right in the pill splitter.
I

by kat73 (May 24)

(Head nodding in agreement - good idea.)

by David Fitz (May 23)

I agree with you Kat, against the manufacturers guidance. Maybe the best way to do it would to be to make sure to take each half of a pill on consecutive days, ensuring you at least are getting the

by kat73 (May 23)

I did it. Nobody told me not to. I got a pill-cutter box at the pharmacy and it was easy. I did try hard to align each pill correctly in the box so as to make an exact half cut; I
Category: Treating CML

Replies: 5

Last updated: 24 May 2019
Philiptibbs on 29 March 2018

Category: Treating CML

Replies: 20

Last updated: 22 May 2019

Very Scared and Confused...
by Philiptibbs (May 22)

I'm seeing my Doctor June 3rd and asking to be switched to Sprycel .

by cmljax (May 21)

Have you talked to your doc about switching TKI's. Sprycel would be my first choice because Tasigna is more like Gleevec than Sprycel, so Tasigna might cause the same pain. Also, if

by Philiptibbs (May 16)

They also say opioids are bad and I agree but no one has an answer for why my muscles hurt so bad and how to get rid of the bone pain and my ribs hurt and lower back and mt legs are very weak . They

by Philiptibbs (May 16)

I felt better when I was taking the pain pills but know they are no good for me and thats why I reduced the amount I'm taking . If my back and ribs and legs didnt hurt so much Id get off them
Category: Treating CML

Replies: 20

Last updated: 22 May 2019
bp3 on 7 May 2019

Category: Treating CML

Replies: 5

Last updated: 21 May 2019

Bosutinib and fasting
by bp3 (May 21)

Brc-abl bounces from .6 to 1.1 or so for the last year and a half. Tested every 3 months.

by bp3 (May 21)

Thanks for the link!

by RC Kirk (May 8)

How have your PCR numbers been since a year ago? Are you still taking 500mg Bosulif?
https://www.cmlsupport.org.uk/thread/12160/pcr-risingneed-advice

by RC Kirk (May 8)

Or you could take it without food for a few days and it probably wouldn't cause any problems.
Here's a quote from a review article about bosutinib:
"The effect of food was studied among
Category: Treating CML

Replies: 5

Last updated: 21 May 2019
Ontasigna on 9 May 2019

Category: Treating CML

Replies: 1

Last updated: 9 May 2019

Lymphocyte - 66℅
by scuba (May 9)

It's not percentages that matter (for the most part) - it is the absolute numbers which tell the story.
At any given time, your body will produce/release more lymphocytes and/or neutrophils in

by Ontasigna (May 9)

Hi there,
I go my Blood report today. My lymphocyte is at 66℅ and Neutophil at29℅
Lymphocyte is bit high. Anything to be worried about.
Please suggest.
Category: Treating CML

Replies: 1

Last updated: 9 May 2019
Roland on 2 May 2019

Category: Treating CML

Replies: 3

Last updated: 7 May 2019

Sprycel after effects
by Roland (May 7)

Thanks for the reply. I have noticed mine is more noticeable in the morning also. I am experiencing higher weigh as well. I will take this up with my Oncologist my next visit. I was diagnosed PH+CML

by dlb65 (May 6)

Yes I too experience numbness in my hands in the distribution of the median nerve. It is worse in the mornings and it seems to be related to fluid retention in that when I’m up in my weight

by David Fitz (May 2)

Hi Roland,
It is listed as a "common" side effect of dasatinib in combination with traditional chemotherapy in children, but it's not something I have commonly seen adults complain of

by Roland (May 2)

I have developed numbness in my hands after approx. one year use. Anyone experience this?
Category: Treating CML

Replies: 3

Last updated: 7 May 2019
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