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MartinZA on 7 August 2019

Category: Treating CML

Replies: 3

Last updated: 7 August 2019

Going to start fasting on imatinib
by Sueso (Aug 7)

Hi and good luck in your fasting.
I take my imatinib 400 mg after my last meal at 8 pm and this couple days I`m suffering from acid reflux and stomach pain from imatinib and im taking 40 mg

by MartinZA (Aug 7)

Hi scuba
Thanks a lot for the detailed information! I'm so glad I asked as I didn't know that there was a limit as to how many Brazil nuts to eat. I'm going to eat four a day

by scuba (Aug 7)

Hi Martin,
No nausea taking imatinib on an empty stomach? Lucky you!
8 brazil nuts a day could be too many.They are loaded with selenium. Each nut averages 50 ug - some nuts as high as 100 ug. For

by MartinZA (Aug 7)

Hi everyone
After reading the many interesting and informative posts by scuba and others on fasting, selenium, curcumin, Vitamin D and imatinib, I have decided to try my own experiment. I am
Category: Treating CML

Replies: 3

Last updated: 7 August 2019
Trevorp93 on 7 August 2019

Category: Treating CML

Replies: 2

Last updated: 7 August 2019

Next Step after pcr results need advice
by AlastairC (Aug 7)

Hi Trevor. While you have an upward trend the overall level is still pretty low. If your next test result is upwards again, I think mutation testing might be a plan. From the results of that you and

by ColoradoGuy (Aug 7)

I can't speak to all of your questions but I went from 0.111 to 1.2 then switched from Sprycel to Tasigna. First results are 0.36 so it can come back down. Of course I want below 0.1 soon. I know

by Trevorp93 (Aug 7)

Hi everyone, My PCR result went up 0.03 from 0.054 to 0.088 Can anyone give me ideas on what's my next step is? ive been on sprycel for 18 months now. Should i be concerned on my test results
Category: Treating CML

Replies: 2

Last updated: 7 August 2019
Ontasigna on 28 July 2019

Category: Treating CML

Replies: 7

Last updated: 1 August 2019

Missed a dose
by Ontasigna (Aug 1)

Yes, I was dx last dec. It's been 7 months now.

My 6th month PCR is 0.0065.
My joint and muscle pains are still the same. Have to hit gym or get doc appointment to get some relief :-)

by AlastairC (Jul 29)

Hi, Have you been on Tasigna for 6 months or more - I see you have been using the site for 6 months.? If so, and you've not had this issue before, and it has not got better 3 days after your

by Ontasigna (Jul 29)

Yes, I am on Tasigna 400 mg BD. Does missing a dose have any effect on my PCR?
It's been like 3 days after my missed dose. I still have joint point.

by AlastairC (Jul 29)

Hi, if the joint pain goes within 1-2 days of taking your normal dose, it could well related to the missed dose. If it goes on after that I think it probably has another cause. The half life
Category: Treating CML

Replies: 7

Last updated: 1 August 2019
saifur360 on 17 March 2019

Category: Treating CML

Replies: 5

Last updated: 31 July 2019

chronic myeloid leukemia
by Shekhar (Jul 31)

Hi vikram,
This was the toughest for all time. We went to the doctor and rest he explained all about the CML. We knew each other, and she was well know about all this. Explaining to her family was

by Vikram (Jul 26)

Hi shekhar
How to explain your wife and her family before Married about cml, treatment and risk..

by David Fitz (Jul 25)

Alex,
You're right - the consensus is that it's fine to father a child on imatinib. There are several presentations and videos on this site by Jane Apperley which can be found using the

by Shekhar (Jul 25)

Hi, I had no problem in getting married. I have been taking Imatinib 400mg from 2004 and got married in 2013. We have a child of 4yrs. We are spending a normal life. As per my doctor, CML want be
Category: Treating CML

Replies: 5

Last updated: 31 July 2019
Ontasigna on 19 February 2019

Category: Treating CML

Replies: 2

Last updated: 24 July 2019

Need advice : urgently
by David Fitz (Jul 24)

45 days is not a long time, with your spleen receding again there's all sorts of movement going on inside you - especially when it was large at diagnosis.
It will settle - it's really common

by alexmcpee (Jul 24)

Hey,
I too had 22cm Spleen at diagnosis and went back to normal after about 6weeks. I had some pain in that area as it returned to its normal size but it was felt in my back rather than the front.

by Ontasigna (Feb 19)

Hi all,
Need your advice/suggestions.
I have pain in my left upper abdomen since last 4 days. My wbc count is normal- 5300.
I had enlarged spleen 22 cm at dx - 45 days back and i am currently on
Category: Treating CML

Replies: 2

Last updated: 24 July 2019
mayita on 12 July 2019

Category: Treating CML

Replies: 6

Last updated: 19 July 2019

Milk Thistle, Dandelion Tea, Multivitamin
by mayita (Jul 19)

Correct, I stopped Milk thistle (I was also overdosing), and the chemo pills too (doctor requested). The oncologist did a Resistant Panel Mutation test to rule out mutation. He said the Bosulif is

by israel (Jul 19)

Interesting find Mayita.
So:
Concomitant use with a strong or moderate CYP3A inhibitor increased bosutinib Cmax and AUC compared to BOSULIF alone/[see Clinical Pharmacology (12.3)]/which may

by mayita (Jul 18)

Hi Israel,
see under "Drug interactions"; from the link you sent. It says:
DRUG INTERACTIONS
•Strong and Moderate CYP3A Inhibitors: Avoid concomitant use with BOSULIF.

by Sunny (Jul 15)

Hello Mayita,
Thanks for the info.
If I understand correctly from your post, 1- Bosulif metabolizes via enzyme CYP3A4.
Category: Treating CML

Replies: 6

Last updated: 19 July 2019
Ontasigna on 15 July 2019

Category: Treating CML

Replies: 4

Last updated: 17 July 2019

Need Help : Feeling cold all the time
by scuba (Jul 17)

Have your thyroid checked and verify TSH, T4, T3 levels (total and free) are normal.
TKI's can impact the thyroid especially during TKI withdrawal (treatment free remission). It did mine

by Tanya Cuffe (Jul 17)

I have had chills pre diagnosis and also now still.It is most unpleasant however I believe it is just one of the symptoms of CML and can also continue on meds.I find it’s just something I

by Ontasigna (Jul 17)

Have chills sometimes. Feel cold most of the times

by alexmcpee (Jul 15)

Hi there,
I am on Tasigna for 15 months not at MMR yet I defo feel the cold more than I used to. When you say chills do you mean you sometimes have the shakes?
Alex
Category: Treating CML

Replies: 4

Last updated: 17 July 2019
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