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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
Avril Dailly on 22 August 2017

Category: Uncategorised

Replies: 6

Last updated: 28 September 2017

Taurine supplements
by Tidal-Life (Sep 28)

Ajuvedic medicine is way, way older than school medicine (thousands compared to 100s) so it has a lot of good remedies...only hard thing is to find a good Ayuveda Doc - India or elsewhere.
Anyway, I

by Amit (Sep 19)

I am not sure how much anyone of you believe in Aurvedic oils and how much its available in the UK but the aurvedic oil that i got from kerala india helped me loads and now i don't have any cramps

by Avril Dailly (Aug 28)

Hi Chrissie,

Hadn't heard of magnesium oil. Will look out for that in Holland Barret. Thankyou.

by Avril Dailly (Aug 28)

Thank you John. I haven't tried it yet. Just been reading about it. I had posted before asking if anyone else had noticed they were wheat intolerant since taking imatinib. Since I cut wheat out my
Category: Uncategorised

Replies: 6

Last updated: 28 September 2017
alangent on 14 June 2017

Category: Treating CML

Replies: 7

Last updated: 28 September 2017

Alternatives to imatinib
by AlastairC (Sep 28)

Stewart, just wanted to pick up on your point on whether previous radiotherapy could be a cause of CML. I was Dx 11 years ago with CML, and 30 years ago had 3 weeks of radiotherapy after a diagnosis

by sandy craine (Sep 24)

Hi Stewart,
Yes all the posts on this forum can be viewed by others.
Re: diabetes and nilotinib. There are lots of studies that confirm the connection with nilotinib and diabetes type 2 -

by Stewart Bliss (Sep 22)

Hello Sandy,
I not sure if this post is going to be viewed by other CML patients/sufferers or not...
Briefly I was diagnosed November 2014, and have been on Nilotinib ever since, now a 'young' 73

by sandy craine (Jul 3)

Hi John,
Just a note on diabetes and TKIs.... I think the issue is with nolotinib and diabetes, not with bosutinib.
Sandy
Category: Treating CML

Replies: 7

Last updated: 28 September 2017
Kathyp on 22 September 2017

Category: About CML

Replies: 3

Last updated: 26 September 2017

14 years on glivec
by Kathyp (Sep 26)

Hi, I was 400 for months but it wasn't getting the desired results so i was put on 600, which has worked a treat for 14 years x

by Kathyp (Sep 26)

Hi, I was 400 for months but it wasn't getting the desired results so i was put on 600, which has worked a treat for 14 years x

by sandy craine (Sep 24)

Hi and welcome,
Why are you on the higher dose of imatinib (glivec) ? Do you have access to your test results?
Sandy

by Kathyp (Sep 22)

Hi, not been on this group for along time , I was dx back in 2003 , I'm on 600 mg glivec and I'm doing great , other than this constant fatigue ,weak muscles ,I thought after 14 years that I'd
Category: About CML

Replies: 3

Last updated: 26 September 2017
gordyboy on 25 September 2017

Category: Uncategorised

Replies: 0

Last updated: 25 September 2017

spironolactone
by gordyboy (Sep 25)

Has anyone any information on this water tablet either using,have used,know about it Regards
Category: Uncategorised

Replies: 0

Last updated: 25 September 2017
Basil from RSA on 22 September 2017

Category: About CML

Replies: 2

Last updated: 24 September 2017

A time for reflection
by Basil Jacobs (Sep 24)

Hi Chrissie
I am not the longest survivor off aTKI. There sre others who have been off longer. Holding a record is not important at all but what is important is that it can point to the future for

by chrissie (Sep 22)

A truly inspirational and heartfelt post from you, Basil. I guess you currently hold the record for being TF and holding it. Many congratulations and yes, today my thoughts have turned to CML

by Basil from RSA (Sep 22)

Hi we are again able to celebrate life on this very special day, 22 September.
This year I am going to mainly devote my day on thoughts to those very brave CML warriors who lost the fight against
Category: About CML

Replies: 2

Last updated: 24 September 2017
JulieK on 19 September 2017

Category: Side effects

Replies: 2

Last updated: 23 September 2017

Nilotinib and hair loss
by cdw5000 (Sep 23)

Hi,
this is a known side effect, but I have found side effects to be cyclical - some months my hair is thicker than others. I went to half dose recently (300mg/day) after a long and sustained

by cmljax (Sep 22)

On 600mg Tasigna my hair stopped growing but did not appear to be thinning. When I reduced my dose to 450 mg and then later to 300 mg, the hair started growing again on my head, but not my

by JulieK (Sep 19)

I was diagnosed with CML in June 2017, and started Nilotinib on the 7 July. So far treatment appears to be going well and I am suffering minor side effects (tiredness and intermittent muscle
Category: Side effects

Replies: 2

Last updated: 23 September 2017
Kym on 27 August 2017

Category: Blood tests

Replies: 6

Last updated: 21 September 2017

New to cml could do with advice please
by Kathyp (Sep 21)

Hi, I was diagnosed back in 2003 and it took me along time to come to terms with it and I to had a slow response to glivec , I was put on 600 mg and that has worked its magic . Hope you are ok too I

by Justine (Sep 3)

Hi Kym, I was diagnosed in April. I think denial is a perfectly appropriate response to this disease! As lucky as we are, that this once-fatal disease is now manageable, it is a strange in-between

by johnw1001 (Sep 2)

Hello Kym,
I will not add to what other members of this forum have contributed but perhaps would wish to comment on the issues of "coping" and "support" when diagnosed with a condition like CML.A

by EvaH (Aug 30)

I agree with David. I was 41 at diagnosis last year, my 3 month results were "sub optimal" but my 6 month results were fine and I achieved undectectable very fast (10 months).
There are about 5
Category: Blood tests

Replies: 6

Last updated: 21 September 2017
asifinf on 13 April 2016

Category: Treating CML

Replies: 5

Last updated: 19 September 2017

Nilotinib to Dasatinib switch
by davewell (Sep 19)

For another perspective...
I am on dasatanib. I started out on 140mg, now I am on 100mg.
When starting dasatinib I had a headache that manifested itself for a couple of hours every day. Nothing too

by filawong (Sep 18)

Hi,
Good to find your post here, how are you recently? Can you share any update for us?
I am 34 years old male staying in Macau, my situation is very similar to you, having Nilotinib for

by David Fitz (Apr 16)

Hi again!
Sorry for the short-ish reply. I'm on my phone replying so typing not great.
Pleural effusion is zero issue for me. It does effect some people, but when it does happen it's

by asifinf (Apr 15)

Thank you very much or the prompt response David.
Yea, the mutation test has just been done; I am awaiting the result now.
One important thing I would like to know about Dasatinib is the side
Category: Treating CML

Replies: 5

Last updated: 19 September 2017
matthew.hulbert on 3 August 2017

Category: Drug-drug interactions

Replies: 4

Last updated: 13 September 2017

Malaria
by RodM (Sep 13)

I used Doxycycline as an alternative, for a trip to Indonesia, I had no issues with it.

by EvaH (Aug 17)

Many may not agree, but I really have doubts about taking malaria prophlaxis at all and especially for a short trip. I lived in malaria zones for years (on and off) and indeed was in one when I was

by MartinZA (Aug 16)

Hi Matthew
I took Malarone myself when on dasatinib and had no serious side effects; however, there was a rash that appeared all over my body two days into using the Malarone. It was not

by David Fitz (Aug 3)

Malarone is fine. I've taken it myself with dasatinib, but there is no issue with it and imatinib either.
https://www.drugs.com/interactions-check.php?drug_list=1321-0,278-129
Category: Drug-drug interactions

Replies: 4

Last updated: 13 September 2017
David Fitz on 5 September 2017

Category: Treating CML

Replies: 7

Last updated: 13 September 2017

Dropping to 70mg
by Karinne (Sep 11)

Congratulations on your decision!!!!
Let us know about your progress. How often are you going to do your pcr test?

by alliswell (Sep 8)

Congratulations . very good news indeed .
i hope you can keep your score at same level .
will be following , keep us updated ..
Good luck

by chrissie (Sep 8)

Wow. Great news, David. Hopefully, after 2 years om MR4 you will hold it. Keep us posted.
Best
Chrissie

by MartinZA (Sep 7)

That's wonderful news, David! Well done.
Category: Treating CML

Replies: 7

Last updated: 13 September 2017