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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
Karinne on 27 September 2019

Category: Uncategorised

Replies: 8

Last updated: 30 September 2019

Undectable status
by AlastairC (Sep 30)

Sarah, at these really low levels the repeatability of the PCR process has quite a wide scatter. Processes vary; if your actual level is 0.0083% the test results could be anywhere between about 0.

by Sarah63 (Sep 30)

Scuba,
I think I understand you saying <0.01 is equivalent to “undetectable.”....
So, in my case (0.0083), my PCR would be equivalent to undetectable (?) right?
My doc

by kat73 (Sep 29)

Ditto Karinne. Johns Hopkins went to a more sensitive test about 2 years ago and its limit of detection is 0.002. I take that to mean they are confident of accuracy up to that point.

by Karinne (Sep 28)

But you know that there are on the market, tests that are way more sensitive than 0.01%. For example, my lab is sensitive to MR4.7 or 0.002% and below that, they just say detected but below
Category: Uncategorised

Replies: 8

Last updated: 30 September 2019
sheikhcml88 on 26 September 2019

Category: About CML

Replies: 2

Last updated: 29 September 2019

Tasigna - Nilotinib
by sheikhcml88 (Sep 29)

Dear Alastair,
Thank you for your valuable words, definitely i will discuss with my doctor and share here as well and thanks for the Prof Clark presentation.

by AlastairC (Sep 26)

Hi Sheikh
there is no general answer to your question about how long you need to take nilotinib (Tasigna). There have been a range of studies that show that there is a good chance of remaining in

by sheikhcml88 (Sep 26)

I hope and pray all are ok with good health and spirit.
My question is abut how long i have to take the tasigna ? .Currently i am fit and more healthy .I am using tasigna for last 4 years my test
Category: About CML

Replies: 2

Last updated: 29 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
koralia.pappi on 27 September 2019

Category: Food & fitness

Replies: 1

Last updated: 27 September 2019

Workout and tasigna
by Snowman35 (Sep 27)

Hi koralia!

No problem at all!. I often go for training 0.5-1 hour after I take my pill!

by koralia.pappi (Sep 27)

Hi all,
Diagnosed 4 months ago, on Tasigna 2x300, my latest PCR is 0.32% (yeahhhhh ) and I'm trying to get my routine back to normal.
I'm not the fittest of people, but I want to add some
Category: Food & fitness

Replies: 1

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
rsgiles on 24 September 2019

Category: Blood tests

Replies: 12

Last updated: 26 September 2019

Rising PCR test
by rsgiles (Sep 26)

Ok thank you so much. My doctor that I’ve had from the beginning in 1998 retired. I still speak to him and take him out fishing once in a while and it has been years since he retired. He

by kat73 (Sep 26)

I think you're probably all right. (One thing you can count on is that there is no significant difference between the 14 and the 26.) The worry comes in as to trend, but probably

by rsgiles (Sep 26)

I am still taking gleevec and I don’t think the test changed. The only thing I did notice was that it only had the number for the international scale and that was 0.0026%. The test before this

by AlastairC (Sep 26)

Good call Kat - I've seen a number of these type of posts over the years when a lab has a new more sensitive test system and results appear to be increasing, but it is just the shiny new kit
Category: Blood tests

Replies: 12

Last updated: 26 September 2019
Wendi Englehart on 26 September 2019

Category: Drug-food interactions

Replies: 8

Last updated: 26 September 2019

CML counts going up on Sprycell
by Wendi Englehart (Sep 26)

Thank you all retest is scheduled with a new Bone Marrow Biopsy this month.

by scuba (Sep 26)

Wendi,
Your numbers are suspect. I think it may be lab error or misreporting of some kind.
Ask for an immediate re-test. Also - at 2.45 (if it were real), you would see CML cells under the

by ColoradoGuy (Sep 26)

I have switched from 100mg Dasatinib to Nilotinib. There are a couple of threads in the forum where people have switched from Dasatinib even though tolerating it well.
I would definitely get a

by Snowman35 (Sep 26)

Did you talk with your doctor? Maybe you have to try another tki! Maybe sprycel is not for you!
Category: Drug-food interactions

Replies: 8

Last updated: 26 September 2019
scuba on 26 September 2019

Category: Uncategorised

Replies: 3

Last updated: 26 September 2019

Hot off the press ...
by scuba (Sep 26)

"Why all doctors do not follow the same line?"
... because the practice of medicine is more art than science. We are all different and yet same. Our genetics come from two parents and

by Snowman35 (Sep 26)

Here in Greece they insiste that 100mg if you don't have side effects is the best dose you have to take..... Why all doctors doaesn t follow the same line?

by sheikhcml88 (Sep 26)

WOW Great news

by scuba (Sep 26)

I have been saying this for years ...
https://www.docwirenews.com/docwire-pick/hem-onc-picks/update-on-dasatin...
A recent study found evidence supporting the use of dasatinib 50 mg in chronic‐phase
Category: Uncategorised

Replies: 3

Last updated: 26 September 2019
jriccoboni on 12 September 2019

Category: Uncategorised

Replies: 12

Last updated: 25 September 2019

Achieved MMR but lost it
by Sueso (Sep 25)

Thanks a lot.

by scuba (Sep 25)

I take the one made by "bestvite". Physician naturals is another source - same ingredients.

by Sueso (Sep 24)

Hi
I don`t want to bother you but I can not find a brand for curcumin c3 complex + bioperine give a good amount of curcum ,may I know wich brand
are you using.
Thank you

by Sueso (Sep 21)

Many thanks for your information you have shared.I was taking turmeric over three years ,and I did`not get any benefit from it.Now I know why.
Category: Uncategorised

Replies: 12

Last updated: 25 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
Aeje10327 on 23 September 2019

Category: Uncategorised

Replies: 3

Last updated: 24 September 2019

Symptoms prior to diagnosis
by dobh (Sep 24)

Mine was at 180k, I was also put in Hydroxyurea, After a month my count was 80k, then moved to Gleevec and in about 2.5 week they went back to normal

by Crfharris (Sep 23)

I started taking 400 mg. gleevec on August 12. Two weeks later my blood counts were normal. I started out with a WBC of 20k. Of course there are so many other markers they are watching. At my most

by Rick B (Sep 23)

Welcome to a club you probably did not want to belong to. Based on my experience, I was diagnosed in June 2018 and on July 5 started 400 mg Imatinib daily. Not only did the WBC return to

by Aeje10327 (Sep 23)

Hi everyone, I was diagnosed with CML 2 weeks ago after a post partum visit. Several weeks prior to my diagnosis I started having tingling in my lips in addition to a strange metallic taste with
Category: Uncategorised

Replies: 3

Last updated: 24 September 2019
Tedro on 22 September 2019

Category: Side effects

Replies: 3

Last updated: 23 September 2019

Skin and Dasatinib?
by Tedro (Sep 23)

Thank you!
I pretty much just do what they say, PCR?
I know this: my resukts went from 100 to 10 to 1 or something, pretty much cured. my cll keeps my wbc up, not much maybe 20,000.
I will ask.

by kat73 (Sep 23)

I had something similar to that, only it didn't itch and never affected my scalp. Still, it was bumpy and mysterious. It came and went (several months of it) a couple of times (so, a

by Snowman35 (Sep 23)

I have a friend that had exactly the same problem at the start of her therapy(she take tasigna) after a few months all the skin oumos where gone. I think when you will get used to the drug all thw

by Tedro (Sep 22)

I've been taking 100mg Sprycel qd.
CML is pretty much gone. I also have CLL, which is not being treated and perhaps never will.
I have itch bumps on my back, upper arm(s), abdomen, neck... head
Category: Side effects

Replies: 3

Last updated: 23 September 2019
thomas.c on 23 September 2019

Category: Blood tests

Replies: 2

Last updated: 23 September 2019

1.3 log increase on dasatinib after mr4.5
by Felix (Sep 23)

Hi Thomas, you had an infection that could do it .I have had an infection twice ,an infected insect bite and a scratch on my ankle from a bramble.I left them for a few days to see if they would get

by AlastairC (Sep 23)

Hi Thomas, there are a few posts a year like yours where PCR results seem to take a big jump. Many of them prove to be an anomaly in the test process and the next result goes back to the previous

by thomas.c (Sep 23)

Hello everyone,
I was hoping to ask for your opinion... i am 33 yo, and have been undergoing treatment with 100mg dasatinib for the past 2 years. My cml was noticed quite early. Everything went
Category: Blood tests

Replies: 2

Last updated: 23 September 2019
scuba on 20 September 2019

Category: Uncategorised

Replies: 5

Last updated: 23 September 2019

Big decision coming up ...
by israel (Sep 23)

Hi Scuba,
Congratulations on being more than two years undetected (on low TKI dose)
I'm writing to wish you the best in achieving your TFR goal. You made numerous contributions to the internet

by cmljax (Sep 21)

As you know from my recent post, I too am contemplating the same decision, except I don't have the quite as long on treatment or durable DMR. In my case, I am also dealing with

by Karinne (Sep 20)

Hi Scuba,
I really understand your ambivalence with the choice. For me, it was easier because I had to stop for my lung to recover from pleural effusion. No hesitation right?
I don’t

by scuba (Sep 20)

That's my plan - to decide after I meet with the new oncologist. I'll keep taking my 20 mg dasatinib until my meeting. I am eager to try, however, as I will have a 50-50 shot given current
Category: Uncategorised

Replies: 5

Last updated: 23 September 2019
scuba on 22 September 2019

Category: Uncategorised

Replies: 6

Last updated: 23 September 2019

Latest observations on TFR success with those who have kinase mutations
by cmljax (Sep 23)

Scuba:
I thought you have been on treatment a lot longer than 3 years, which should be in your favor. Good luck. I know you will keep us informed.

by Snowman35 (Sep 22)

I know how you feel. I feel exactly the same! I want to know if i can live without tki! But I will push my self and take them two more years and I will try tfr..!

by scuba (Sep 22)

CMLJAX answered your question in terms of data. Dr. Cortes also mentioned to me personally that 5 years CMR is ideal for trying with two years being the minimal start point. The improvement over two

by Snowman35 (Sep 22)

I ve read exactly the same! I am Mmr4.5 2.5 years. I reached mmr 4.5 after nine months of treatment with sprycel. I have decided to try tfr after five years+ of treatent
Category: Uncategorised

Replies: 6

Last updated: 23 September 2019
JeremyP on 21 September 2019

Category: Uncategorised

Replies: 4

Last updated: 22 September 2019

UK CML patient conference
by JeremyP (Sep 22)

Great!

Thanks again David

by David Fitz (Sep 22)

In the meantime, you could look at some of the videos from last year:
https://cmlsupport.org.uk/uk-cml-patient-conference-2018

by JeremyP (Sep 22)

Thanks very much David, that's great. I learnt an awful lot from watching the feed but, as I said, I missed some of it and other parts were a lot to take in for a CML newbie and it'll be good to go

by David Fitz (Sep 22)

I will try to get recordings up in the next few weeks. It is quite a job, so hard to find the time. But we will do it.
Category: Uncategorised

Replies: 4

Last updated: 22 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