TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

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sandy craine on 5 July 2012

Category: Uncategorised

Replies: 8

Last updated: 3 November 2017

ibuprofen (Neurofen) contra-indicated with imatinib.
by Richard42 (Nov 3)

Its interesting that there may be a very good reason to avoid ibuprofen with imatinib. When I was first diagnosed and treated I had the cramps and bone pain that we all seem to get. My

by AlastairC (Oct 30)

Matt, I had some joint and bone pain when I started taking imatinib (over 10 years ago). It did die down over 3-4 months. I have used both ibuprofen and paracetamol occasionally over the last 0

by Olivia (Oct 30)

Going back to a slightly earlier part of this thread, I went to my GP with sciatica a bit over a year ago. Apart from pain-killers, she suggested that the best treatments were likely to be

by Matt McBrayer (Oct 29)

I know this is an older post, but thought it worth stating that, when I linked to a more detailed report of the study, Naproxen was one of the NSAIDs included in the experiment. However, it did not
Category: Uncategorised

Replies: 8

Last updated: 3 November 2017
K Rivera on 2 November 2017

Category: Side effects

Replies: 2

Last updated: 2 November 2017

Help dealing with CML Sprycel medication side effects! Diarrhea (sorry for tmi)
by David Fitz (Nov 2)

That sounds terrible. Dasatinib isn't massively associatd with diarrhoea - it's usually bosutinib that causes that. However your husband wouldn't be the first to experience bowel problems on

by alliswell (Nov 2)

sorry to hear about side effects that your husband having .
during my mothers diagnosis period , not cml but use of gleevec ( imatinib) and its side effect scared me most . espically pain but we

by K Rivera (Nov 2)

Hello, I am writing here on behalf of my husband. He is only 26 but last week we found out he has CML and he was put on Dasinitab (Sprycel).. Ever since he has horrible diarrhea and cannot keep his
Category: Side effects

Replies: 2

Last updated: 2 November 2017
dadbags on 31 October 2017

Category: About CML

Replies: 1

Last updated: 2 November 2017

decreased dosage
by sandy craine (Nov 2)

Good news Steven,
Thanks for updating this forum.
Sandy

by dadbags (Oct 31)

well like i said before dr changed dosage from 600mm to 200mm its been a year now----still 5600 wbc--all functions liver,kidney etc normal and the best for last NO LONGER ANEMIC----i passed 16years
Category: About CML

Replies: 1

Last updated: 2 November 2017
starente on 24 October 2017

Category: Treating CML

Replies: 4

Last updated: 2 November 2017

New to this with questions
by starente (Nov 2)

Very helpful. Thanks again for your insight!

by David Fitz (Oct 31)

The pain onset pretty quickly, within a week of taking it I remember. It was pretty sudden. For me, it was focused on my legs and arms - particularly the upper half of my legs. It totally nailed me

by starente (Oct 27)

Thank you so much David! A few additional questions if you have time.

How long after starting imatinib did you start experiencing pain?
Was the onset of pain sudden?
Did the pain move

by David Fitz (Oct 27)

Hi there,
Some patients do find dasatinib / Sprycel is hard on their joints. Of course, as we all get older I suppose joint problems are more frequent! However, it this has onset suddenly and is
Category: Treating CML

Replies: 4

Last updated: 2 November 2017
JacqJohn on 28 October 2017

Category: Organising your life

Replies: 1

Last updated: 31 October 2017

Advice prior to start of TKI
by David Fitz (Oct 31)

Hi again,
I know it's frustrating, but the TKIs do all the heavy-lifting in terms of fighting CML. Wouldn't it be great if we knew that eating this or that, and exercising so much would push back

by JacqJohn (Oct 28)

Hi everyone,
My husband will be starting with TKI nilotinib next week. I've been reading about a lot of side effects of this medication. Also I got to know that one of my friends mom recently passed
Category: Organising your life

Replies: 1

Last updated: 31 October 2017
JacqJohn on 27 October 2017

Category: Treating CML

Replies: 5

Last updated: 31 October 2017

New with CML
by David Fitz (Oct 31)

Hi again,
Losing weight prior to diagnosis is really common - I lost several kilos prior to being diagnosed. So as long as this stabilises post-diagnosis there is nothing to worry about.
Hydroxyurea

by alliswell (Oct 27)

hello JacqJohn
for the post Fri, 27/10/2017 - 7:07pm
questions about hydroxyurea , i think it will be better if david answers them. but you seem to be right.
i just wanted to write about fish

by JacqJohn (Oct 27)

Hello David,
thanks for the feedback. He was actually losing weight about 2-3months prior to CML diagnosis. Based on physical examination, he had no enlargement of the spleen/any sort of pain at the

by sue. R (Oct 27)

When I was first diagnosed I was put on hydroxeura as well. It reduced my white count, but also reduced my platelets, red blood and neutrophils to the point where I had to be hospitalized,
Category: Treating CML

Replies: 5

Last updated: 31 October 2017
sue. R on 26 October 2017

Category: Side effects

Replies: 4

Last updated: 30 October 2017

Off spyrcel 100 for 10 days
by sue. R (Oct 30)

Back on spyrcel 100 for 4 days now, blood test in two days. Side effect, all over body itch with tiny red bumps, looks more like measles, but it's not, had that as a child. Not sure of

by sue. R (Oct 27)

Thanks, will look it up. Also will let otter know in a week after on tablet what happens.

by alliswell (Oct 26)

ok it seems like there is a problem with my first link .
google sprycel tablets fda
in my country second link that starts with
https://www.accessdata.fda.gov/drugsatfda.../

by alliswell (Oct 26)

i am copying my post from your other thread
Hi sue,
my mother has a similar situation with imatinib / gleevec at the start of her treatment . her Neutrophils and platelets werent at the danger zone
Category: Side effects

Replies: 4

Last updated: 30 October 2017
sharriott7379 on 20 October 2017

Category: Side effects

Replies: 2

Last updated: 29 October 2017

One year in- looking towards the future- will I ever feel better?
by sharriott7379 (Oct 29)

Hi Naj. Thanks for responding! I started off on 300mg twice a day. Had tons of skin issues- a full body rash and tons of fatigue. My doc lowered my dose to 300 once a day which makes the fasting so

by Naj (Oct 21)

Hi,
Sorry to hear about the side effects you are having with Tasigna . I was diagnosed on Jan 2017 and have been taking Tasigna 300mg twice a day. for the first 3 months I had no side effects at

by sharriott7379 (Oct 20)

Hi all! Just found this support group site and I am so happy! I was diagnosed with CML in August of 2016 just 4 months after giving birth to my daughter. I was put on Tasigna
Category: Side effects

Replies: 2

Last updated: 29 October 2017
David Fitz on 7 January 2015

Category: Uncategorised

Replies: 13

Last updated: 26 October 2017

Ciprofloxacin and dasatinib
by alliswell (Oct 26)

another source for multi-drug interactions
https://reference.medscape.com/drug-interactionchecker

by Karinne (Oct 9)

Hi Eva,
I don't know anything about Trimethoprim but you are right, the drug interaction checker (https://www.rxlist.com/drug-interaction-checker.html) says it is OK with Sprycel.

by EvaH (Oct 9)

Hi Karinne: Side conversation here, but is it not ok to take Trimethoprim with CML meds?

by Karinne (Sep 23)

Thanks David. You, sharing your experience is so helpful.
My hematologist finally answered me and said that the combination was okay for a short period 5-7 days. I am waiting for one more result to
Category: Uncategorised

Replies: 13

Last updated: 26 October 2017
sue. R on 24 October 2017

Category: Side effects

Replies: 3

Last updated: 26 October 2017

Diagnosed June 2017
by alliswell (Oct 26)

Hi sue,
my mother has a similar situation with imatinib / gleevec at the start of her treatment . her Neutrophils and platelets werent at the danger zone but they were falling too fast.

by sue. R (Oct 26)

Thanks David. I'd be glad when it settle down. Now I am off the tablet because all blood counts were down. After two days of not taking the tablet, tiredness seem to go away.

by David Fitz (Oct 24)

Hi Sue,
I'm glad you found us. The first few months are often very tough on people. It was for me, I know. Often things settle down - but sometimes they don't, or everything but one important thing

by sue. R (Oct 24)

Glad I found this site. Very useful forum, lots of interesting advise. Let me introduce my condition, age 59, female, healthy, exercise, lives in Canada. Was treated for knee pain etc,
Category: Side effects

Replies: 3

Last updated: 26 October 2017
vonnie on 17 October 2017

Category: Uncategorised

Replies: 4

Last updated: 25 October 2017

post bone marrow
by vonnie (Oct 25)

hi David thanks for your concern and yes much better episodes getting fewer
thank you
vonnie

by David Fitz (Oct 24)

How are you doing now? Hopefully a little better, at least.

by vonnie (Oct 18)

Thanks David for your reassuring reply much appreciated
Vonnie

by David Fitz (Oct 17)

Hi Vonnie,
I've had a few bone marrow aspirations over the years, and have indeed found myself a bit sore in the muscles around the area for a while after. Takes a couple of weeks to settle down, in
Category: Uncategorised

Replies: 4

Last updated: 25 October 2017
Tidal-Life on 24 October 2017

Category: Organising your life

Replies: 2

Last updated: 24 October 2017

Holiday / Travel Insurance for CML
by johnw1001 (Oct 24)

HI,
There have been a number of threads here on this site in the past and yes basically if insurers can do so they will try to avoid paying out especially if there is any element of non disclosure

by sue. R (Oct 24)

I think if you have a blood test the week before you leave you should pretty well know if it's ok or not if its ok to travel. Yes, in Canada we have the same about travel insurance. Hope all

by Tidal-Life (Oct 24)

Just wanted to share my experience on looking for "travel insurance" as I did just investigate:
I'm diagnosed & on Imatinib since 2 months, good response, and have a holiday booked next week,
Category: Organising your life

Replies: 2

Last updated: 24 October 2017
IvanOpinion on 17 October 2017

Category: Uncategorised

Replies: 1

Last updated: 22 October 2017

Generic version of Dasatinib coming?
by Richard42 (Oct 22)

I understand there are other patents for the drug (the one revoked covered the active compound itself not the actual product and I think there is another one for specific use - I haven't looked but

by IvanOpinion (Oct 17)

As I understand it, the European patent for Dasatinib has been revoked and the patent owner's appeal was rejected earlier this year. Does anyone know if this means we will be seeing generic versions
Category: Uncategorised

Replies: 1

Last updated: 22 October 2017
ThomasS on 17 October 2017

Category: Side effects

Replies: 2

Last updated: 18 October 2017

Sprycel Side Effects
by ThomasS (Oct 18)

Karen, thanks for the reply. The main issues I'm having are joint soreness, low energy, bad ringing in my ears and no sleep. It's really a difficult decision whether I should try switching or not.

by karen (Oct 18)

Hi Tom
I have been on Bosutinib for about 4 years after trying all the others. From my point of view it has been one of the best - I have had a couple of liver issues and I still have some skin

by ThomasS (Oct 17)

I am posting from Atlanta, Ga. I was diagnosed several years ago. Was on Gleevec for several years and Sprycel now for a couple of years. Some of the side effects of Sprycel are difficult and I am
Category: Side effects

Replies: 2

Last updated: 18 October 2017
cndlew on 17 October 2017

Category: Reproductive health

Replies: 0

Last updated: 17 October 2017

Egg harvesting and going off Gleevac twice
by cndlew (Oct 17)

Hello- I am a mother of a 2 year old son. I was in complete CMR, and I went off of Gleevac to conceive, give birth, and breast feed my son. Unfortunately the CML came back while I was
Category: Reproductive health

Replies: 0

Last updated: 17 October 2017
Parklife on 5 October 2017

Category: Side effects

Replies: 5

Last updated: 14 October 2017

Increased cramps/spasms
by Parklife (Oct 14)

Hi Eva/John
Many thanks for your responses.
I will raise the tests you have both stated in your kind replies. I did raise any tests that may show over saturation of TKI at the last appointment with

by johnw1001 (Oct 10)

John,
Have you had a blood test for CK- Creatine Kinase,as inflammation of the muscles known as myositis is a possible cause of some musculo- sketelal issues associated with TKI s and an elevated CK

by EvaH (Oct 9)

I had a routine test done last year, it was checking how much TKi I was left in my system after 24 hours. They said the result was good ie most was eiliminated. You could ask them to test for that.

by Parklife (Oct 7)

Hi Alastair
This is all interesting stuff.
Thanks for your input and mention of Prof Flanagan, I shall look at this further.
If anyone else have any thoughts I would be interested to hear them too.
Category: Side effects

Replies: 5

Last updated: 14 October 2017
Shirrleyannmarie on 12 October 2017

Category: Uncategorised

Replies: 4

Last updated: 14 October 2017

Newly diagnosed
by Shirrleyannmarie (Oct 14)

Thanks for replying Nigel

Yes I have had a bone morrow biopsy, before I was put on any treatment. I will have another chat with the specialist nurse, and see if I will be allowed to change the

by nigel (Oct 14)

Hi thanks for your post Shirley sorry to hear that you have had to join us, cml is generally very treatable now, but a lot to get your head round. Allopurinol is quite normal to reduce a high white

by Shirrleyannmarie (Oct 13)

Thank you for your prompt reply!

by davewell (Oct 13)

It really depends on your condition at diagnosis.
When diagnosed I was borderline accelerated-phase and I had myelofibrosis. I was anemic and with an enlarged spleen .
Sprycel had a huge impact
Category: Uncategorised

Replies: 4

Last updated: 14 October 2017
Tanya Cuffe on 21 September 2017

Category: Uncategorised

Replies: 9

Last updated: 14 October 2017

New to this,need all advice I can get!
by Tanya Cat (Oct 14)

No ones ever mentioned and i font know bout white blood counts in fact she said it was my platelet count was rising and only when they found Philadelphia chromosome did she get the gleevac ball

by Tanya Cat (Oct 14)

Wow that was so quick getting you on Tasigna.It took 3 minths for me to ginally get on gleevac and have heard tasigna is better!Where are you if you dont mind me asking?thank you for responses.

by EvaH (Oct 9)

Could it be that her blood counts are not too high? Not an excuse of course but could explain why they wont give her meds yet
3 months before diagnosis, a had a blood test that showed 50,000 wbc

by April (Sep 25)

Hi Tanya,
I’m living in Australia and your age too. I’ve been diagnosed in July and started with Tasigna a week after diagnosis. It took less than a week for getting PBS approval after my
Category: Uncategorised

Replies: 9

Last updated: 14 October 2017
ayaz ahmad magray on 12 October 2017

Category: Uncategorised

Replies: 1

Last updated: 12 October 2017

Child
by David Fitz (Oct 12)

Hi! I think we've chatted before on Facebook.
For the males it is indeed much simpler than for females, however there is not massively clear data or consensus on the issue for males.
I spoke

by ayaz ahmad magray (Oct 12)

Is any restriction while keep taking dasatinib and trying for child for male.
Category: Uncategorised

Replies: 1

Last updated: 12 October 2017
vonnie on 9 October 2017

Category: Uncategorised

Replies: 4

Last updated: 11 October 2017

tiredness
by vonnie (Oct 11)

Hi John
thanks for your reply its so reassuring to know that these are normal side effects to a wonderful treatment
thanks Vonnie

by johnw1001 (Oct 10)

Vinnie,
The first six months of treatment for CML is usually quite challenging physically and mentally.Tiredness is normal as your body is adjusting to a new drug of molecular therapy /

by vonnie (Oct 10)

hi Andrew thanks for your reply very reassuring i can manage all these side effects knowing it is normal and my husband said he can put up with the flatulance
cheers vonnie

by AlastairC (Oct 9)

Hi Vonnie. Glad to hear your white cell count has come back to normal. On side effects, if you click on the Living heading above and then select side effects, you will see links to the information
Category: Uncategorised

Replies: 4

Last updated: 11 October 2017