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Ontasigna on 1 October 2019

Category: Treating CML

Replies: 0

Last updated: 1 October 2019

dextromethorphan wit Nilotnib
by Ontasigna (Oct 1)

Hi All.,
Has anyone tried taking dextromethorphan when on Nilotinib. I had a check on Drug interaction - Found it to be moderate.
--KY
Category: Treating CML

Replies: 0

Last updated: 1 October 2019
Ontasigna on 28 September 2019

Category: Treating CML

Replies: 3

Last updated: 30 September 2019

RT PCR slightly increased
by Ontasigna (Sep 30)

Hi Scuba/Alastair,
Thanks so much for your valuable information and suggestion.
Regards

KY

by scuba (Sep 28)

Any value less than 0.01% has little meaning. It's in the noise of the test.
For information: They could run two identical tests from one sample of blood and measure PCR one log apart. That is a

by AlastairC (Sep 28)

Hi
The difference between 0.0065% and 0.0078% is not statistically significant. The variabilty of the PCR test process at that very low level is around +/-50% of the measured value. The two results

by Ontasigna (Sep 28)

Hi all,
Today I received my PCR report. There is a slight increase in RT PCR.
I just have missed a single dose. Is it the effect of missing a dose. Am I doing anything wrong?

Please suggest.
Category: Treating CML

Replies: 3

Last updated: 30 September 2019
RC Kirk on 18 September 2019

Category: Treating CML

Replies: 2

Last updated: 27 September 2019

TFR - You Can Do This At Home If You Read The Instructions
by Karinne (Sep 27)

Thank you so much for this article. It is interesting to read about the suggestion for monitoring:
“monitoring of peripheral blood transcripts every 4-6 weeks for 6-8 months, then bimonthly

by johnw1001 (Sep 27)

Hi All,
I think that this article is worth a few comments on several bases.It is fairly well recognised by most clinicians that to be a candidate for TFR and discontinuation then one needs a fairly

by RC Kirk (Sep 18)

I saw this on Facebook and thought the title was catchy.
Discontinuation Of Tyrosine Kinase Inhibitors In Patients With Chronic Myelogeneous Leukemia – You Can Do This At Home If You Read The
Category: Treating CML

Replies: 2

Last updated: 27 September 2019
Sd on 25 September 2019

Category: Treating CML

Replies: 4

Last updated: 26 September 2019

Need some info and a little hope
by Sd (Sep 26)

Hi Vicky,
I appreciate your encouragement. I have always been focused on nutrition, but particularly now. I lost 18# so it is critical that I consume healthy calories. I have always take a multi

by VickyK. (Sep 26)

Hi Sd,

It will get better I promise!!!I am on nilotinib and had some side effects including muscle pain headaches hair loss etc but after third month of medication I started feeling better.

by Sd (Sep 25)

Thanks for your reply. I have done extensive reading, and also consult with the docs about my questions. I have a health care background, which helps with reading the information. It is so wonderful

by AlastairC (Sep 25)

Hi and welcome to the club no-one asked to join. The range and duration of side effects of the drugs varies hugely between people. Many people on Glivec/Gleevac/Imatinib do at least ok and a
Category: Treating CML

Replies: 4

Last updated: 26 September 2019
Snowman35 on 21 September 2019

Category: Treating CML

Replies: 12

Last updated: 24 September 2019

Does anyone has this fear?
by kat73 (Sep 24)

You are very welcome. We are ALL crazy in our own ways.

by Snowman35 (Sep 23)

Ahahaha no Kat73 I don't wash them!I do exactly what you say but some times you say if this if that(this is OCD) Your answers was very helpful!Every time I have this fear I ll read your comments! I

by kat73 (Sep 23)

This seems like a very specific and narrow and therefore EASY problem to fix. Your concern about actually introducing an appreciable amount of water into the pill container is legitimate.

by Snowman35 (Sep 22)

Kat73 I worry if while I take the pill from the bottle the other pills in the bottle get wet from my hands! I am not worried about the pill I take that time....Sorry for writing this again but I
Category: Treating CML

Replies: 12

Last updated: 24 September 2019
Snowman35 on 24 September 2019

Category: Treating CML

Replies: 2

Last updated: 24 September 2019

Is limejuice forbidden?
by Snowman35 (Sep 24)

Thanks David for your quick response!!

by David Fitz (Sep 24)

Really, just avoid grapefruit when it comes to fruit. Pharma companies are very risk averse, so if there was risks with lemons or limes they would be stated stated in the patient information leaflet

by Snowman35 (Sep 24)

Hi again!

I accidentally read to webmd that lime should be avoided. I have asked my doctor several times and told me that the only fruit I should avoid is grapefruit...what is your opinion
Category: Treating CML

Replies: 2

Last updated: 24 September 2019
Jenny9391 on 21 September 2019

Category: Treating CML

Replies: 8

Last updated: 21 September 2019

Second drug to fail... worried mum
by ColoradoGuy (Sep 21)

I was not aware that was the case. Probably for the possible side effects I would imagine but maybe a trial on low dose with required approvals is an option. In any case mutation testing will help

by David Fitz (Sep 21)

Ponatinib doesn’t hold an indication for paediatric CML - so it is not as simple as an adult case.
That’s not to say it doesn’t work in children with T315i, it’s just

by scuba (Sep 21)

It's interesting some doctors are now more aware of vitamin D's role in the immune system and blood development. Bone and blood go together. They are from the same embryonic cells driven

by Jenny9391 (Sep 21)

Theres been no mention about a growing number of blast cells. They have mentioned the vitamin d to me and she now takes a supliment daily. I didnt understand the full extent of why it was important
Category: Treating CML

Replies: 8

Last updated: 21 September 2019
Ontasigna on 17 September 2019

Category: Treating CML

Replies: 1

Last updated: 17 September 2019

Chronic Cough - Antibiotic/Tasigna
by David Fitz (Sep 17)

General advice would be to temporarily stop nilotinib if there is no alternative to this particular antibiotic. Is your doctor aware of the cardiac related potential interaction?
David.

by Ontasigna (Sep 17)

Hi All,
It's been 2 weeks that I have wet cough. I had been to doctor. He has prescribed me Antibiotics (AZithromycin) and montelukast.
It looks like azthromycin should not be taken when on Tasigna
Category: Treating CML

Replies: 1

Last updated: 17 September 2019
Sarah63 on 15 September 2019

Category: Treating CML

Replies: 0

Last updated: 15 September 2019

Selenium -
by Sarah63 (Sep 15)

Hello All of you
Category: Treating CML

Replies: 0

Last updated: 15 September 2019
DKurup on 23 August 2019

Category: Treating CML

Replies: 2

Last updated: 25 August 2019

Stopped Imatinib under Self Prescription.
by DKurup (Aug 25)

Thank you Alaistair.
I did explore the option to ask for Wockhardt, but the pharmacist kept pushing for Accord (not sure why).
Eitherways, here I am and looking for my first blood test in 2

by AlastairC (Aug 23)

I wonder if it might have been worth trying 200mg of the generic which gave you the least side effect - ?Wockhardt. That would put you on the Destiny protocol which gave a higher chance of

by DKurup (Aug 23)

This one is in continuation to my previous question- https://cmlsupport.org.uk/thread/13192/no-more-sandoz-others-cause-side-... - however thought it is worth a new thread.
After
Category: Treating CML

Replies: 2

Last updated: 25 August 2019
Ontasigna on 19 August 2019

Category: Treating CML

Replies: 4

Last updated: 19 August 2019

Hemoglobin dropping consyantly
by Nimbus2 (Aug 19)

Here at the centre of England the range for men is 13.3 to 16.6 g/dL.
I understand that the range for women the top and bottom figures are lower.

by Sueso (Aug 19)

Hi
Hemoglobin Standard Range 11.7 - 16.1 g/dL
Sue

by Ontasigna (Aug 19)

No, I am not sure.
Also I am not aware of "very mild normocytic normochromic anaemia"
Anything to be worried about?

by Nimbus2 (Aug 19)

My HGB has dropped to 111 g/L. My haematologist is virtually certain it is not iron deficiency. Described as "very mild normocytic normochromic anaemia".
Are you sure that your anaemia is
Category: Treating CML

Replies: 4

Last updated: 19 August 2019
JacqJohn on 16 August 2019

Category: Treating CML

Replies: 3

Last updated: 17 August 2019

18months into Glivec (Imatinib) - PCR >0.1%
by JacqJohn (Aug 17)

Hi,
im fairly tolerating well in terms of side effects on Glivec (just typically daily loose stools and the standard normal tiredness). Otherwise I’m quite ok. And yes, I’ve

by scuba (Aug 16)

Tasigna and Glivec work the same way in terms of how the drug binds to the active site in CML leading to cell death. Tasigna binds more tightly and is generally more effective than Glivec because of

by AlastairC (Aug 16)

Hi,
How are you doing with side effects on Glivec/Imatinib? I plateaued at about 0.3% for a few months and then got to less than 0.1% in a big jump. I issed the guideline but I didn't know - the

by JacqJohn (Aug 16)

Hi All,
I’ve been on Glivec 400mg for the past 18 months after discovering intolerance to Tasigna during initial diagnosis of CML.
My BCR-ABL results went from 1.4% —> 0.4% and after
Category: Treating CML

Replies: 3

Last updated: 17 August 2019
Eda on 25 July 2019

Category: Treating CML

Replies: 13

Last updated: 12 August 2019

Tasigna - very low pallet count, low white cells count and granulocytes count
by Eda (Aug 12)

Hi Chris,
I did not realise that your wife was also treated in Poland and I am glad to hear that the treatment she received was good.
My mum is being treated by a haematologist who apparently did

by gof (Aug 12)

Dear Edyta,
you can find more deep explanation of the CML in Polish in this Ph.D. thesis: http://www.wbc.poznan.pl/dlibra/plain-content?id=157731
We cannot say bad word for my wife's

by Eda (Aug 11)

Hi David,
Thank you for sharing that with me. She has had two biopsies so far so one would hope that any additional abnormalities would have been discovered... However, during my dad's very long

by Eda (Aug 11)

Hi Chris,
Thank you very much for your response & for the links. It is really really helpful.
I was waiting for my mum to obtain a copy of her latest molecular test results (QPCR). It was done
Category: Treating CML

Replies: 13

Last updated: 12 August 2019
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