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Ontasigna on 19 February 2019

Category: Treating CML

Replies: 4

Last updated: 19 February 2019

Need advice : urgently
by Ontasigna (Feb 19)

Thanks so much Eva. Appreciate your support and suggestions

by Evelinka89 (Feb 19)

Your Hb is fine then ( I suppose it is quite recent result). If you won't get yellowish or feeling worse, it it is ok to wait until friday. It is quite uncommon during therapy, but could happen

by Ontasigna (Feb 19)

Thanks Eva.
Yes, my indirect bilirubin is 4.8 mg/dl. Urine and eyes are normal in color.
I infact all of a sudden have lost appetite since 4 days n feel full after eating a little. Hemolysis?

by Evelinka89 (Feb 19)

The best and most accurate way is to do an abdominal ultrasound. Physical examination is quite useless as it can detect just enlarged spleen and only if it is at least twice as normal size.
I
Category: Treating CML

Replies: 4

Last updated: 19 February 2019
Ontasigna on 17 February 2019

Category: Treating CML

Replies: 4

Last updated: 19 February 2019

CBC report - Increased indirect bilirubin,Basophils and Eosnophils
by Evelinka89 (Feb 19)

I do not know which bilirubin units are used in your country. I suppose something else than micromoles per liter, because in these units 4,8 is pretty low 😊. I checked various units and if it is mg/

by Ontasigna (Feb 18)

Looking for some suggestions urgently. Pls help.
My indirect bilirubin jas spiked up to 4.8. Is it harmful?

by Ontasigna (Feb 17)

Yes, Neutrophils - 45% and lymphcytes - 43%.
My indirect bilirubin has climed up till 4.8 now.

by AlastairC (Feb 17)

Do your test results show a number for neutrophils?
Category: Treating CML

Replies: 4

Last updated: 19 February 2019
POPPY on 19 October 2018

Category: Treating CML

Replies: 10

Last updated: 14 February 2019

To proceed with Allo SCT or no?
by Job Guerra (Feb 14)

I would not be overly concerned about 12% at this point. I was at 23% after 3 months (which is not good), 1.8% at 6 months, and still going down. Not everybody responds the same. I

by POPPY (Feb 14)

Hi All! His first PCR test showed 12% (he was on 400mg twice daily). We were told that 10%-20% is the warning zone and anything that falls below 10% is in the safe zone. Now his dose has

by RC Kirk (Nov 28)

Thanks for the update with the good news!

by POPPY (Nov 28)

Hi Kirk,
After 2 months (diagnosed on Sept) , his bloodwork is now normal. His basophils reduced from 22% to 2% then increased to 4% and then decreased to 0.7%. Finally, good news after several
Category: Treating CML

Replies: 10

Last updated: 14 February 2019
Maxmillan Maxmillan on 11 February 2019

Category: Treating CML

Replies: 5

Last updated: 13 February 2019

Swollen leg, pain, weakness and nausea.
by kat73 (Feb 13)

Has he even Googled hydroxyurea? He needs to see a doctor. Period. Glad his Gleevec dosage has been put right, but the hydroxyurea is just nuts. Also, a guy who falls, faints

by Maxmillan Maxmillan (Feb 13)

My friend has started one day with his normal dosage of 400mg of Gleevic (reduced from 800mg) the lightening pain in his legs has significantly subsided. He did take 500mg of hydroxyurea

by Evelinka89 (Feb 12)

I cannot see any connection between oedema and possible rise of WBC. Yes, there is a little physiological rise after trauma but not so high to cause this. It has to be really high to develop

by AlastairC (Feb 12)

I am also not a medical professional but feel that this does not stack up. I can't see the trauma of the fall leading to a WBC that made hydroxurea a good idea, and I'm not at all sure what
Category: Treating CML

Replies: 5

Last updated: 13 February 2019
MartinZA on 21 December 2018

Category: Treating CML

Replies: 3

Last updated: 12 February 2019

Fasting and imatinib
by Ray Sell (Feb 12)

Martin I'm wondering how your fast went after Christmas. I to am on Imatinib and would like to do the fast. Thank You Ray

by MartinZA (Dec 24)

Hi David
Thank you so much, as always, for your quick and helpful reply. I'm going to give it a try over this festive season and start fasting after Christmas. Will let everyone know

by David Fitz (Dec 21)

Hi Martin.
The advice to take imatinib with food is down to the fact that a fair amount of people feel nauseous if it's taken on an empty stomach. I know I certainly did feel a bit squiffy

by MartinZA (Dec 21)

Hi everyone
I have read with a great deal of interest the exceptionally interesting posts by scuba regarding fasting on dasatinib and the possibility of hitting the quiescent CML cells hard.
Category: Treating CML

Replies: 3

Last updated: 12 February 2019
MartinZA on 11 February 2019

Category: Treating CML

Replies: 6

Last updated: 12 February 2019

Bobbing about in MMR
by fiona vaughan (Feb 12)

I’m still waiting to feel grateful but I am not there yet. I was only diagnosed 3 months ago and at the time it didn’t really sink in and I just took the meds as I was told and carried

by kat73 (Feb 11)

Came in late here and never saw the deleted post. Am guessing, but I suspect there was some understandable venting of despair and anger. Whenever you hear the word "leukemia"

by MartinZA (Feb 11)

That is such a great response. Thank you so much for making me feel better and bringing some support to this support forum! Don't we all have bad days?!

by Damian Gabilondo (Feb 11)

Dear, I see that he is a man of numbers, me too, but I realized that not everything is a matter of numbers, statistics, percentages, answers, surveys and studies. The cure is in ourselves and how we
Category: Treating CML

Replies: 6

Last updated: 12 February 2019
Ontasigna on 7 February 2019

Category: Treating CML

Replies: 6

Last updated: 7 February 2019

Help!! Unable to sleep due to anxiety
by Felix (Feb 7)

Hi,cut out caffeine and chocolate ,they keep me awake at night .Worth a try .

by Ontasigna (Feb 7)

Thanks so much Jax and Lukas. I am feeling positive now. Appreciate your support.
Jax- Is Ativan safe to take along with tasigna? Or Should be taken after couple of hrs?

by kali (Feb 7)

Great suggestions!
You can also tighten and relax each muscle group from head to toe. When finished focus on deep breathing and visualize the medicine attacking the cancer and as you breathe in

by scuba (Feb 7)

CML causing your anxiety?
I found that by taking 250 mg magnesium (as magnesium citrate or magnesium taurate) at bed time, it relaxed me and I sleep much better - back to normal. It also took care
Category: Treating CML

Replies: 6

Last updated: 7 February 2019
Ontasigna on 1 February 2019

Category: Treating CML

Replies: 4

Last updated: 6 February 2019

ECG - tasigna - dropped heart rate
by Ontasigna (Feb 6)

Thanks so much Eva.

by cmljax (Feb 3)

My QT and QTc both went up about the same as yours when I first started on 600 mg/day Tasigna in Oct 2016 - QTc went from 420 - 445 and is now 426 and I am not worried. This is not an

by Evelinka89 (Feb 2)

Hi,
tyrosinkinase inhibitors sometimes prolong QTc. Prolongation to 408 ms is harmless if you are otherwise ok, without any symptoms and could be a side effect of Tasigna. Usually normal

by Ontasigna (Feb 1)

Look for help. Kindly look into it.
Category: Treating CML

Replies: 4

Last updated: 6 February 2019
Sarah63 on 30 January 2019

Category: Treating CML

Replies: 3

Last updated: 31 January 2019

Brand new
by scuba (Jan 31)

Alistair,
Thank you so much for posting the link. I had a very good time listening to the "experts" response regarding fasting, dose and related.
For those who want to listen to the key

by AlastairC (Jan 31)

Sarah the question of fasting was discussed at the CML patient day last September. The clinicians' discussion is on this link, about 5 mins 45 seconds into the video. The question was

by David Fitz (Jan 31)

Hi, and welcome. The search box should return you the right result if you enter “fasting” into it.
David.

by Sarah63 (Jan 30)

Hello, I’m a brand new member, needing help to navigate this site. ATM, I am mainly interested in prolonged fasting and was following a thread by “Scuba” on the subject. I joined
Category: Treating CML

Replies: 3

Last updated: 31 January 2019
flanders2 on 11 January 2016

Category: Treating CML

Replies: 8

Last updated: 30 January 2019

Blast Crisis CML
by Ros77q (Jan 30)

Hi there i was diagnoses in chronic phase and later develop to bp. I achieve second cp with dasatinib and in cytogenetic remission now. I am about to have my bmt very soon. Hope it goes well and

by darley (Jan 17)

^ Couldn't agree more with some of the sentiments expressed in your post Sandy.

Particularly "Survival often depends on getting the right information and that is not always as

by sandy craine (Jan 15)

Hi Courtney,
My knowledge of US geography is not that good...but MD Anderson Cancer Centre in Houston is one of the premier centres- including for CML and the Acute Leukaemias - it is also a premier

by Lucas (Jan 13)

Courtney, first of all, i'm sorry about your dad and i wish very good luck for him. Second: there's a great forum in the US with good people that are able to help you. here's the link:
Category: Treating CML

Replies: 8

Last updated: 30 January 2019
Ros77q on 26 January 2019

Category: Treating CML

Replies: 3

Last updated: 29 January 2019

Cml blast phase
by Job Guerra (Jan 29)

It depends on how long you were taking Gleevec. If you only recently (3 months or less) started taking Dasatinib then 25% is probably not the worst result. However, If you have

by Ros77q (Jan 27)

Hi scuba thanks for reply.
my doc said i m in remission. May be i am back to chronic phase. Bone marrow report says no marrow fibrosis no atypical cell.

by scuba (Jan 26)

Need more information ...
You were diagnosed in June 2018 and imatinib failed you. You started dasatinib and was successful in returning to chronic phase (blasts ~ 1%) which is good. Your latest

by Ros77q (Jan 26)

Hi there i was diagnosed in june 2018 and started imatinib. But it did not respond well and cml reached to blast phase. I started dasatinib along with chemo therapy and came back to chronic. My
Category: Treating CML

Replies: 3

Last updated: 29 January 2019
Ontasigna on 28 January 2019

Category: Treating CML

Replies: 0

Last updated: 28 January 2019

Tasigna: Optimal response @ 3 months
by Ontasigna (Jan 28)

Hi all,
Is there anybody who have not achieved optimal response < 10% and still continuing tasigna?
I could see most of them achieve it.
--Ontasigna
Category: Treating CML

Replies: 0

Last updated: 28 January 2019
bendicco on 27 January 2019

Category: Treating CML

Replies: 4

Last updated: 28 January 2019

Gleevec and antidepressants
by Gitel (Jan 28)

You are correct David, thanks. Gitel

by David Fitz (Jan 27)

QT Interval, perhaps?
https://en.m.wikipedia.org/wiki/QT_interval

by bendicco (Jan 27)

Thanks for your response. Yes my oncologist and the pharmacist both at Sloan know I’m on it. The Gleevec does enhance the efficacy of the Cymbalta but I have not had any issues!

by Gitel (Jan 27)

Did the physician who prescribed the anti depressant know you were on Gleevec? I used to be on Gleevec, was switched to Sprycel because of resistance. In each case, pharmacologist told
Category: Treating CML

Replies: 4

Last updated: 28 January 2019
ian hinley on 27 January 2019

Category: Treating CML

Replies: 1

Last updated: 27 January 2019

Vitamin D in cancer interview
by scuba (Jan 27)

Link to summary of the VITAL study concluding little impact of vitamin D on Cancer:
https://www.vitalstudy.org/findings.html
The study is flawed. The test subjects were given too little vitamin D

by ian hinley (Jan 27)

http://www.cancernetwork.com/article/does-vitamin-d-have-role-cancer-pre...
Category: Treating CML

Replies: 1

Last updated: 27 January 2019
piyush sharma on 23 January 2019

Category: Treating CML

Replies: 3

Last updated: 24 January 2019

Increase in bcr-abl1% from 0.02548 to 0.0431
by AlastairC (Jan 24)

The increase between the last two results is not significant, and well within the range of accuracy of the test technique. I agree that another test in 3 months to out your mind at rest would be a

by RC Kirk (Jan 23)

Yes, I agree with Justine. But, if it were me, I would ask for another PCR test in three months just to be sure.

by Justine (Jan 23)

Your results are great!
As someone with CML who did not achieve MMR until 21 mos. after diagnosis, I will say that your trend is wonderful.
My understanding is that small changes like this are

by piyush sharma (Jan 23)

Hi,
I am little worried as my bcr-abl1 IS% slightly increased in the recent test result . Please help me understanding if i need to consider change in therapy.
I am on Imatinib 400 mg since
Category: Treating CML

Replies: 3

Last updated: 24 January 2019
Justine on 23 January 2019

Category: Treating CML

Replies: 0

Last updated: 23 January 2019

Recent publication on TFR from US Leukemia & Lymphoma Society
by Justine (Jan 23)

Just ran across this very recent document.
http://www.lls.org/sites/default/files/National/USA/Pdf/Publications/FS3...
It is helpful to understand CML basics and where we stand with TFR
Category: Treating CML

Replies: 0

Last updated: 23 January 2019
bendicco on 14 January 2019

Category: Treating CML

Replies: 12

Last updated: 22 January 2019

CML USA meetup
by Jason1435 (Jan 22)

Well hopefully everything is under control now. This is all new to me and I'm learning as much as I can. Its great your cml is under control. Since I started back on my meds I've had no side effects

by Jason1435 (Jan 22)

Had my testicle removed. I had chemotherapy no radiation.

Chemo didn't work, so had the lipnodes removed that were infected with cancer. Was cancer free for over 10 years until this.

by RC Kirk (Jan 19)

Jason, have you considered going to a lower dose of Sprycel? It could possibly give better results, since you had low platelets.
I was DX after giving a blood donation to the Red Cross.

by AlastairC (Jan 18)

Hi Jason,

Interested to read that you have a CML diagnosis some years after testicular cancer, which is exactly my experience. Did you have radiotherapy for your testicular cancer? I
Category: Treating CML

Replies: 12

Last updated: 22 January 2019
Tedro on 18 January 2019

Category: Treating CML

Replies: 1

Last updated: 18 January 2019

missed my dose
by David Fitz (Jan 18)

No, just take it again at 4pm as normal and don’t worry.
David.

by Tedro (Jan 18)

Hello,
I take Sprycel 100mg once a day at 4pm. I missed it today and took it when I remembered at 1am, 9 hrs late.
Should I, then, take my next dose 4.5hrs later (8:30pm) and then the next day back
Category: Treating CML

Replies: 1

Last updated: 18 January 2019
Ben C on 15 January 2019

Category: Treating CML

Replies: 3

Last updated: 15 January 2019

West London Treatment for a Newbie
by johnw1001 (Jan 15)

Hi Ben,
I have 13 years experience of both NHS and private healthcare funded on insurance and in addition was initially dx overseas in Bangkok so had the issue of whether it was safe to fly home as

by AlastairC (Jan 15)

If you're in West London the Hammersmith is a no brainer. Prof Jane Apperley's team are very highly respected. Dr Dragana Milojkovic is one the consultants there; she did a talk at the

by Nimbus2 (Jan 15)

The NHS can act very quickly. When I was diagnosed in July, I visited the GP surgery for tests on a Monday and got results and a telephone call from the GP on the Tuesday. I visted the hospital

by Ben C (Jan 15)

It’s been very uplifting reading a lot of these threads. The positivity and support from you all has been amazingly heartwarming to one another and really assured us on certain concerns. That
Category: Treating CML

Replies: 3

Last updated: 15 January 2019
pc on 26 December 2018

Category: Treating CML

Replies: 12

Last updated: 14 January 2019

Blast crisis
by LabNoir (Jan 14)

I am very sorry to hear about this and my thoughts are with you. I had a friend who went to blast and then failed a BMT so I feel for you l. First, thank you for your tips and I totally agree with

by Justine (Jan 12)

Thanks Ray.

by Ray Sell (Jan 9)

Hi Justine Sorry for the delay in answering. My blood draw was 2 Jan 2019, I will have results next week. I have 3 Dr appointments next week. FUN one, get to see my

by Justine (Jan 7)

Hi Ray, did you get your latest blood results? How is it going?
Category: Treating CML

Replies: 12

Last updated: 14 January 2019