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sandy craine on 14 August 2014

Category: Uncategorised

Replies: 8

Last updated: 17 December 2015

Dom
by MekaMa (Dec 17)

You bring about a valid point. I guess the flip side is that we are operating under unknown condition. Issues can and do arise ALL OF THE TIME when individuals are not on these medications. I mean

by Dom (Aug 31)

Hi Chris

Thanks for taking the time to provide this info. Much appreciated. I see my consultant tomorrow and I know he's not going to offer any guarantees but everything I've read from people

by cdw5000 (Aug 26)

Hi Dom,
My wife and I are considering family and have been through a similar journey. I was fortunate enough to talk directly to Prof Apperley at the 2013 CML patient day - she also held a sidebar

by Dom (Aug 23)

Hi Jenni, thanks for sharing this info. Sandy has been very reassuring with the research evidence she has provided. Of course we are all naturally very careful over this and want to speak to as
Category: Uncategorised

Replies: 8

Last updated: 17 December 2015
Gst on 9 December 2015

Category: Getting help

Replies: 2

Last updated: 14 December 2015

SCT my journey so far
by sandy craine (Dec 14)

Well done for reaching the 100 day milestone. As for temp spikes- this happens and they really need to keep you monitored just in case! I know it must be frustrating ( I was lucky and didn't

by darley (Dec 11)

Yep! Been there. Done that. I remember saying I felt a bit like a kid having been given an ice cream to then have it snatched away. Just when I thought I

by Gst (Dec 9)

Hello everyone,
Well what a journey so far and it cotinues. I had my SCT on in August and was discharged about 10 weeks after this after an up and down few months. I have been readmitted about 5
Category: Getting help

Replies: 2

Last updated: 14 December 2015
mrobinson on 12 December 2015

Category: Side effects

Replies: 2

Last updated: 14 December 2015

Support level needed for treatment
by sandy craine (Dec 14)

Hi Mike,
Like Darley has said, it is difficult for those of us based in UK/Europe to advise on the US healthcare system as it is based on the level of private health insurance plan you have.

by darley (Dec 13)

Hi and sorry to hear the news about your son.
I seem to be first to respond to your post so need to say that this forum is prodominently UK based members. Hence we have different challenges

by mrobinson (Dec 12)

Hi,
My son Jonathan, age 28, appears to have CML. He lives in Texas, we are in Maryland.
We are helping to enroll him in healthcare plans with a Dec 15 deadline looming. If we enroll him
Category: Side effects

Replies: 2

Last updated: 14 December 2015
ed hokaj on 8 December 2015

Category: Side effects

Replies: 2

Last updated: 12 December 2015

severe fluid retention
by ed hokaj (Dec 12)

Sandy
thanks for your reply
i will be off SPRYCEL for the nexxt 3 weeks and we may be using nilotinibl(TASIGNA)

the fluid came very quickly the last time
the thoracentesis was done at a local

by sandy craine (Dec 9)

Where are you being treated? If it is a specialist haematology centre- and therefore experienced in treatment of CML with TKIs - they should know that one of the adverse events caused by dasatinib (

by ed hokaj (Dec 8)

I have been on SPRYCEL for 6 months at this time. I have had 2 THORACENTESES in three weeks.a total of 4.4 liters of fluid was extracted.
shortness of breath has come back and it looks
Category: Side effects

Replies: 2

Last updated: 12 December 2015
johnw1001 on 8 December 2015

Category: Treating CML

Replies: 1

Last updated: 8 December 2015

A new TKI on the horizon-Radotinib approved by Korean FDA
by sandy craine (Dec 8)

Hi John,
thanks for this post.... there is link to ASH abstract re: a phase 3 comparative trial here:
476 Efficacy and Safety of Radotinib Compared with Imatinib in Newly Diagnosed Chronic

by johnw1001 (Dec 8)

Hi All,
Have just been looking at what papers on CML are being presented at the ASH Conference in Orlando this week and note the topical issue of the potential for a new TKI Radotinib (IY5511HCL) to
Category: Treating CML

Replies: 1

Last updated: 8 December 2015
Dennis on 27 November 2015

Category: Uncategorised

Replies: 6

Last updated: 8 December 2015

Glivec and pain killers
by Dennis (Dec 8)

Hi John, thanks for that. I agree that there will be many GP's etc that aren't up to date with drug interactions based around TKI's. Heck, my GP openly says that I know more about

by johnw1001 (Dec 7)

Avoid Ibuprofen-evidence now available
Hi Dennis,
In the light of available evidence your consultant appears to be entirely correct and up to date in suggesting that CML patients undergoing TKI

by Dennis (Nov 28)

Thanks David. My consultant told me NOT to use Ibuprofen, hence the use of co dydramol. Seems like there's no steadfast rules on the use of pain killers.

by David Fitz (Nov 27)

Every now and then, paracetamol or ibuprofen will be fine ... that's the message I was given by my doctors.
But habitual use os paracetamol especially is not great, as it's tough on the
Category: Uncategorised

Replies: 6

Last updated: 8 December 2015
stemeltony on 30 November 2015

Category: Side effects

Replies: 4

Last updated: 3 December 2015

Bitter taste/strain in lower left abdomen (lymph node)
by stemeltony (Dec 3)

Thanks Sandy.
will update once I have seen my doc on the 7th.
cheers
stephen

by sandy craine (Dec 2)

Hi Stephen, and welcome to this forum/website. I may be coincidental but if the symptoms only appeared after you changed the time you took dasatinib (Sprycel) then try going back to you previous

by stemeltony (Dec 1)

Thanks John.
spoke to my nurse and he told me to see GP if the pain is unbearable. At the moment I am fine. My appointment is next week so I will be informing my doc about this. Hopefully it goes

by Parklife (Nov 30)

Hi Stephen.
I had pain in the inside of my groin/leg (lymph node area) whilst on Imatinib in the first few months. This was looked and turned out to be nothing. It also went away.
However we are not
Category: Side effects

Replies: 4

Last updated: 3 December 2015
Ivan on 1 December 2015

Category: Treating CML

Replies: 2

Last updated: 1 December 2015

Greetings
by Ivan (Dec 1)

Thank you, for the welcome, Sandy. I've already read quite a lot, but I still have to learn much more and actually experience it first hand.
Ivan

by sandy craine (Dec 1)

Hi Ivan,
Welcome to this forum and website. I suggest you do not try to learn too much too fast, so best to visit our CML facts page to start with:
http://www.cmlsupport.org.uk/section/10-facts-

by Ivan (Dec 1)

Hello everyone,
My name is Ivan and I'm 30 years old and I've been diagnosed with CML on Oct. 26. I just went for a routine check up and they found, that my WBC was 52000. I'm waiting to
Category: Treating CML

Replies: 2

Last updated: 1 December 2015
seanreed79 on 22 November 2015

Category: Side effects

Replies: 5

Last updated: 29 November 2015

Just a few questions for a newbie...
by darley (Nov 29)

Yep! We can most definitely confirm that's rubbish!

I was told I wouldn't see out 3 months. That was over 20 years ago. That was rubbish too :)

by seanreed79 (Nov 29)

Thanks Sandy, Nigel and Darley
Much appreciated for advise; Tonic water and bananas on the diet now, leg pain miraculously went early this week so 10 days of it, did 5k race Saturday and it

by darley (Nov 24)

Hi Sean,
Welcome to the club no one wants to join. ;) Hang in there mate. You will be going through a period of adjustment and shock!
I was 42 when diagnosed.

by nigel (Nov 23)

Hi Sean. welcome the the new world of being a CML patient. sorry you have had to join us. I was diagnoised at 45, and put on Imiatinib. I was a keen squash played before diagnosis, playing to a
Category: Side effects

Replies: 5

Last updated: 29 November 2015
david_a on 28 November 2015

Category: Uncategorised

Replies: 2

Last updated: 29 November 2015

Relapse and quick MMR recovery on destiny trial
by sandy craine (Nov 29)

Hi David,
thanks for the update... as Darley suggested it would be good if you could copy your post into the DESTINY thread pinned to the top of the page- that way we can all keep abreast of what

by darley (Nov 29)

David,
Glad your results are back to o.k.
There's a pinned post at the top of the Forum re DESTINY updates. Would be really good for you to copy and past up there. This is the link

by david_a (Nov 28)

Hi All.
Just an update on my progress after my relapse on the DESTINY trial.After 2 months back on full dose of glivec 400mg my PCR reduced from 0.297% back down to 0.023% on the I/S so I'
Category: Uncategorised

Replies: 2

Last updated: 29 November 2015
On Fire on 28 November 2015

Category: Side effects

Replies: 2

Last updated: 29 November 2015

anger issues
by Parklife (Nov 29)

Hi
I would personally be inclined not to rule out your TKI causing or at least contributing to your symptoms. I believe if you Google low mood or depression and Nilotinib (Tasigna) in the side

by darley (Nov 29)

Frankly, I don't think it's the medication and I think it would be wrong to try to look purely at that as an explanation.
Cancer diagnosis is a BIG thing to deal with and you are you

by On Fire (Nov 28)

Hi all
Its been a while since logging in. It's now a year 2mths since cml diagnosis. All is going well and I'm responding very well to treatment. However I feel sad at time I don't know why. In
Category: Side effects

Replies: 2

Last updated: 29 November 2015
Sarah_143 on 26 November 2015

Category: Uncategorised

Replies: 0

Last updated: 26 November 2015

Colouring your Hair
by Sarah_143 (Nov 26)

Morning,
The consultant I had whilst in hospital said it was ok to dye my hair but the consultant that I now see in the outpatients clinic said no to dying of hair unless it's a natural one and
Category: Uncategorised

Replies: 0

Last updated: 26 November 2015
Ecorrigan on 7 June 2014

Category: Uncategorised

Replies: 9

Last updated: 25 November 2015

Life insurance
by Tusken Raider (Nov 25)

Hi everyone, first time poster here, thought I'd finally get myself round to registering after seeing this post, this website has been an extremely valuable resource to me!
The reason it stood

by darley (Nov 19)

^The prices and conditions are broadly similar to ones I found and which I decided wasn't worth it.

by derren (Nov 18)

Hi All,

I have been looking into Life Insurance again and a broker managed to find me a policy with AIG to give life cover until the age of 65(currently 44) for the small price of £197

by Richard42 (Oct 16)

That's useful info Matt. Like Darley, I no longer have life insurance other than a general group policy at work, for which I do not have to make any medical declaration. I used to
Category: Uncategorised

Replies: 9

Last updated: 25 November 2015
Triumphant on 23 November 2015

Category: Treating CML

Replies: 2

Last updated: 24 November 2015

What to do next?
by Triumphant (Nov 24)

Thank you Sandy. His last wbc was 102,000. He had the enlarged spleen on Imatinib but it even worsened in the first weeks of taking Nilotinib. The side pains stopped on its own but the headaches,

by sandy craine (Nov 23)

Hi, I am sorry to hear of your husbands problems getting access to nilotinib (Tasigna). I assume you are treated in the US as you use the brand name Tylenol for paracetamol/pain killer.
To

by Triumphant (Nov 23)

My husband was diagnosed in 2011 with CML, started on gliveec , 400 mg. later increased to 600 mg.
After 3 years, they said he had developed a resistance to the drug and should switch to
Category: Treating CML

Replies: 2

Last updated: 24 November 2015
wshi2001 on 17 November 2015

Category: Uncategorised

Replies: 6

Last updated: 23 November 2015

BCR-ABL increased after switching from Dasatinib to Imatinib
by sandy craine (Nov 23)

HI William,
Low HGB may well be the cause of your heart increase heart rate- although is this an increase that has been measured by your clinician or is it something you 'feel'? I am not

by wshi2001 (Nov 23)

hi, Sandy,
I forgot to mention my HGB is hopping around the lower limit 120-130. My white cell is quite low between 1.8-3. My potassium and magnesium level are at normal range

by wshi2001 (Nov 23)

hi, Sandy,
I went through the presentation for side effects as well as some others, they are really helpful to me. However, I notice heart problem is not really emphasized in the

by sandy craine (Nov 19)

William, do take a look at Dr. Milojkovics' presentation/slides outlining the side effects caused by the different TKIs. see link here : www.mpdmeetings.org/london-conference-2015/
Her
Category: Uncategorised

Replies: 6

Last updated: 23 November 2015
Frenchguy on 18 November 2015

Category: Uncategorised

Replies: 3

Last updated: 23 November 2015

Changing sprycel box for « fewer » side effects ?
by Daphne123 (Nov 23)

Hi, nice to be here~~~

White Evening Gowns

by Frenchguy (Nov 20)

Hi William,

Thanks for your answer. I have already changed of TKI on last June and was on Nilotinib before but felt worse than on dasatinib with a less good response. For my case, I

by wshi2001 (Nov 19)

hi, Frechguy,
I also suffered from heart pounding, sleeping difficulty due to sprycel. My doc gave me tranquilizer to help me sleep, but not too much useful. It doesn't get better

by Frenchguy (Nov 18)

Hi every one, hope you are fine in these difficult days... I wanted to share some news and need advices according to what happened to me last days.

One month ago, when I switched on new
Category: Uncategorised

Replies: 3

Last updated: 23 November 2015
Andy Parkin on 15 November 2015

Category: Uncategorised

Replies: 1

Last updated: 19 November 2015

UK Patients and Carers Day conference
by sandy craine (Nov 19)

Hi Andy... I agree, the day was particularly we run and organised. I thought all the clinical presentations were well pitched and informative and the patient stories were not only moving and well

by Andy Parkin (Nov 15)

Just to say many many thanks for another excellent conference yesterday. I've attended 9 of these now and each one has been so informative, and provides such a positive story . Thanks to all who
Category: Uncategorised

Replies: 1

Last updated: 19 November 2015
Sarah_143 on 19 November 2015

Category: Uncategorised

Replies: 2

Last updated: 19 November 2015

Recently Diagnosed...
by Sarah_143 (Nov 19)

Hi Karen,
Thanks for the info.
I've been told that I can take ibuprofen, which I do take if my legs ache, haven't got cramp yet though so look forward to that bout if I get it lol...
I'm

by karen (Nov 19)

Hi Claire
Welcome to the site. Side effects can be a bit of a mixed bag - some people get the straight away and with others it takes time. When I was on Imatinib it took a while for the cramps to

by Sarah_143 (Nov 19)

Morning All,
I was recently diagnosed on the 28th of October and found your CML Support group a couple of days ago and so decided to join as looking through the threads there seems to be a lot of
Category: Uncategorised

Replies: 2

Last updated: 19 November 2015
sandy craine on 18 November 2015

Category: About CML

Replies: 1

Last updated: 19 November 2015

Prof. Tessa Holyoake wins award for her research
by darley (Nov 19)

I read that elsewhere. Well done and good that she gets acknowledgement for her work and efforts.

by sandy craine (Nov 18)

http://www.eveningtimes.co.uk/news/14035804.Glasgow_cancer_doctor_wins_t...
Category: About CML

Replies: 1

Last updated: 19 November 2015
nigel on 18 November 2015

Category: Uncategorised

Replies: 0

Last updated: 18 November 2015

SPIRIT 2 - Dasatinib continuation at end of trial
by nigel (Nov 18)

Following the excellent patients conference at Hammersmith Hospital on Saturday I thought I would update on a conversation I had with Professor Steve O'Brien who runs the SPIRIT 2 trial.
Category: Uncategorised

Replies: 0

Last updated: 18 November 2015