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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
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
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
coco on 5 October 2017

Category: Side effects

Replies: 2

Last updated: 10 October 2017

Looking for Tasignia patient to share symptoms
by Arthur (Oct 10)

Hi Coco,
I was diagnosed with CML on June 8, 2015. I was on Gleevec until September 30, 2017 (ten days ago), when the doctors decided I had developed resistance to imatinib and had to move to

by Harsh (Oct 7)

I am on 800mg per day nilotinib from past 10 months.In the first month i had skin rashes which subsided later on,but didn't have other 2 symptoms.Pls check with ur oncologist.

by coco (Oct 5)

Hi,
I was taking Gleevec for 1yr and Dr. Just switched me to Tasignis. I am experiencing blood in sputum, not too much every other day, but I am very concerned. I feel something in my throat
Category: Side effects

Replies: 2

Last updated: 10 October 2017
CarrieF on 31 July 2016

Category: Blood tests

Replies: 4

Last updated: 5 October 2017

Blood work results that prompted investigation
by stashhunter43 (Oct 5)

Hi, I have an appt with my general doctor tomorrow and have been researching my blood test results. My platelets were high 540, up from 425 from a blood test 2+ years ago. This time my

by David Fitz (Jul 31)

Carrie,
Though high white cell and neutrophil counts are a CML marker, that's not the only reason you would see them elevated. A routine bacterial infection would also see elevated levels of

by CarrieF (Jul 31)

Hi David

Thank you for replying. I am being treated for an autoimmune disease so I have lots of routine blood work.

Over the last 4 months my platelets and WBC count has been rising and

by David Fitz (Jul 31)

Hi Carrie,
Almost always, it's an elevated white blood cell count (neutrophils, particularly) is the marker than is seen in blood that causes further investigation, leading to a CML diagnosis.
Category: Blood tests

Replies: 4

Last updated: 5 October 2017
Job Guerra on 26 September 2017

Category: Uncategorised

Replies: 3

Last updated: 4 October 2017

Aches and pains
by elenauxbridge (Oct 4)

Hi job
My name is Elena, I'am 31 years old and i was diagnosed with cml the last 3 weeks .My doctor gave me nilotinib for my treatment but i feel lucky because I dont

by sandy craine (Oct 1)

Hi Job,
Welcome to this forum and website. I agree with David's point that it is very early days for you.... you will experience aches and pains and it does depend on the individual how this kind of

by David Fitz (Sep 28)

Hi Job,
I'm pretty much the same age as you. Only a month in to dasatinib is still pretty early days - your body is adjusting to lots of stuff. For example, it's having to work extra hard to process

by Job Guerra (Sep 26)

New to this. 37 years old and diagnosed one month ago (one week before my birthday). WBC was 252...then 129...then 33...and after a month on dasatinib 4.8. This is great and I am thankful for that
Category: Uncategorised

Replies: 3

Last updated: 4 October 2017
nick_italy on 26 September 2017

Category: Uncategorised

Replies: 1

Last updated: 1 October 2017

Muscular / Limb problems
by sandy craine (Oct 1)

Hi Nick,
I had a very similar reaction for the first 12 weeks of taking imatinib. It did disappear exactly at 3 months just as predicted, but that doesn't help your Mum much. All I can advise

by David Fitz (Sep 26)

ADMIN NOTE: I moved this post to a new thread. Actual author is "Nick_Italy", not me.
------------------
Hi everybody,
this is my first post here.
My mum is 59 and she was diagnosed with CML on
Category: Uncategorised

Replies: 1

Last updated: 1 October 2017
Belinda Whitting on 2 September 2014

Category: Uncategorised

Replies: 4

Last updated: 30 September 2017

Nose bleeds
by Linda Hall (Sep 30)

Hi, my husband also has CML and he has nosebleeds and he is currently in hospital. Last week for six days. He had a transfusion of platelets on the day the pack came out and a follow up five

by Belinda Whitting (Sep 7)

Thankyou for your comments. It has helped.

by karen (Sep 5)

Hi Belinda
It would be worth your husband getting his bloods checked to see if the TKI is affecting the way his blood is clotting, this is probably more the case rather than his CML progressing. It

by cdw5000 (Sep 5)

Hello Belinda,
while i can't offer any specific advice about the nose bleeds themselves, I do have sinus and ENT problems brought about (I think) by my TKI. What I can say is that the PCR results
Category: Uncategorised

Replies: 4

Last updated: 30 September 2017
Simon D on 16 September 2017

Category: Side effects

Replies: 2

Last updated: 28 September 2017

Dasatinib side effects
by Simon D (Sep 28)

Hello Sandy
I'm back on Nilotinib for the moment... need to decide whether to try Dasatinib again, will be seeing the specialist on Tuesday about it. In my mind it was definitely a direct reaction

by sandy craine (Sep 24)

Hi Simon,
I was wondering if the effect you had was to do with a reaction to dasatinib or it turned out to be another issue entirely. I hope all is well and you have resumed therapy?
Sandy

by Simon D (Sep 16)

Hello, wondering if anyone has had a similar experience to me when switching to Dasatinib. Having been on Imatinib, then Nilotinib for over 3 years our consultant discussed with us the option to
Category: Side effects

Replies: 2

Last updated: 28 September 2017