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David on 25 May 2012

Category: Uncategorised

Replies: 6

Last updated: 6 June 2012

Information, please
by David (Jun 6)

Ali
Thank you so much for your offer of contact. I have given Val your contact details and I anticipate she will be in touch. It is very kind of you. All the very best to you too.
Regards
David

by Ali Loram (May 30)

David Hi,

I have been on ALL of the available drugs, so changing has been a large part of my treatment! I started on Glivec & been through all of them! I seem to be intolerant to all on

by sandy craine (May 26)

Hi David,
As you know I have no experience of any TKI apart from imatinib, but I would advise that Val follows the advice of her doctors from HH- an expert centre- who have experience in treating

by sandy craine (May 26)

Dear Lynn....
I am sure your story will be of great encouragement to others.... especially those suffering severe IM side effects.

Very best of luck for your triathlon tomorrow!
Sandy
Category: Uncategorised

Replies: 6

Last updated: 6 June 2012
ni2i on 20 May 2012

Category: Uncategorised

Replies: 2

Last updated: 21 May 2012

confused again
by ni2i (May 21)

Hi Nigel
Thanks for the reply, I'm sorry you are confused as well, I think my confusion is I am unsure which test is which, and that the results always seem similar, basically do the 2 tests measure

by nigel (May 20)

Hi Ni, Like you i am quite confussed, as 3 months ago i was told i was 35% PH+ 6 weeks later PCR 14%, then bone marrow result this week again another 6 weeks later( thus 3 months since the last bone

by ni2i (May 20)

Hi All
Since Thursday when my nurse rang me and told me i am stuck at 5%pcr i have been doing some research and have now managed to confuse myself more (not hard to do i know) Ok here it is, when i
Category: Uncategorised

Replies: 2

Last updated: 21 May 2012
sharito on 20 May 2012

Category: Uncategorised

Replies: 1

Last updated: 21 May 2012

Bone pain
by sandy craine (May 21)

hi Sharon,
You should ask for your plasma levels to be tested to see if you have normal levels of Magnesium, Vit D3 and Vit B12.
You can supplement with all the above.. but best to get your doctor

by sharito (May 20)

Hi,

Just after some advice, in the past week or so I've had really bad bone pain a couple of times in one of my legs to the point where i can't even walk. Then the next day, it's died down
Category: Uncategorised

Replies: 1

Last updated: 21 May 2012
EmChops on 19 May 2012

Category: Uncategorised

Replies: 6

Last updated: 20 May 2012

Anyone know how to work out the international score/ scale for PCR ?
by cdw5000 (May 20)

Thanks for the reply Sandy.
I'm going to write to my previous onc this week to see if she can shed any light on why/how i can have such differing results. It's not that i particularly want to get

by sandy craine (May 20)

Hi Chris,
well I am confused too!

In my previous post to Emma, when I said that all UK labs have converted to the IS I should have said...all labs that are attached to the expert centres.... i

by Janet (May 20)

Hi Sandy, Emma and all...
I'm not sure that all the labs in the UK are anything like converted to the IS. I still get my results in log reductions...and the lab doesn't give any figures at all to my

by cdw5000 (May 19)

not meaning to hijack the thread, however, my question is relevant:
Per one of my previous posts, i have found myself in a peculiar situation. In the US, my labs (non-IS)were giving a result of BCR-
Category: Uncategorised

Replies: 6

Last updated: 20 May 2012
jacqui from Col... on 6 June 2012

Category: Uncategorised

Replies: 14

Last updated: 12 June 2012

Feeling great off the drugs
by gizmos mum (Jun 12)

Hi Terry, sorry for late reply, only just saw your comment. I will give you a call in a few days, thanks

by gizmos mum (Jun 12)

Hello Sandy

Thank you for you very informative and reassuring comments. I am now taking the tablet with my evening meal and lots of water, so at least i am not feeling ill all day, just for 3

by terryhickmott (Jun 9)

Hi,
I'm happy to chat. 01745 334202. On Imatinib 6+ years now. Terry.

by sandy craine (Jun 8)

Karena,
I will be attending the EHA (European Haematology Association) conference in Amsterdam next week and will find out more about the side effect profile of ponatinib. I will let you know what
Category: Uncategorised

Replies: 14

Last updated: 12 June 2012
ni2i on 17 May 2012

Category: Uncategorised

Replies: 7

Last updated: 22 May 2012

Advice please
by ni2i (May 22)

Thanks Sandy i am treated at the North Wales Cancer Centre but they liase with prof Clark I have met him once and luckily he is only an hour away should i need to go back.
Thanks again

by sandy craine (May 22)

Dear Naomii,
At least things are now more clear for you and it is possible that you need to change therapy. Prof. Clarke is really good and very patient friendly- Liverpool Royal is an CML expert

by ni2i (May 22)

Ok i have now been for my blood test and found out that i'm not stuck at 5% i have actually gone upto 7% so not happy, I had a good chat with my nurse and they are now sending my bloods to the

by sparkypcl (May 20)

Hi, just to say that I hadn't reached ccr so my Consultant changed my Glivec to 600mg per day and that did the trick. That was in 2004 and I still take 600mg daily as it seems to suit me and keeps
Category: Uncategorised

Replies: 7

Last updated: 22 May 2012
Lyndsey on 16 May 2012

Category: Uncategorised

Replies: 1

Last updated: 17 May 2012

Panic attacks
by sandy craine (May 17)

Dear Lynne,
First of all I must congratulate you on your very quick response to therapy. MMR in 10 months is excellent and you should be very reassured by that.
As for anxiety/panic attacks. I think

by Lyndsey (May 16)

Hi there.

I was wondering if anyone suffered from panic attacks? This is something that came along after my diagnosis 10 months ago and each night I wake up in a panic that I I'm dying or a
Category: Uncategorised

Replies: 1

Last updated: 17 May 2012
sandy craine on 14 May 2012

Category: Uncategorised

Replies: 2

Last updated: 14 May 2012

4.5 week checkup, so far so good Submitted by teddyb on Mon, 14/05/2012 - 16:27.
by teddyb (May 14)

Thank you Sandy :)

by sandy craine (May 14)

Good results... normal blood counts and a normal spleen, This is just what you want to see at this point. Well done.
Sandy

by sandy craine (May 14)

WBC at 5.4 (Down from 77 2.5 weeks ago)

Hemoglobin 12 (Up from 11,4 2.5 weeks ago)

Platlets normal
My Onc smiled and said it was a good result, so im happy :)

He then tried really
Category: Uncategorised

Replies: 2

Last updated: 14 May 2012
chrissie on 14 May 2012

Category: Uncategorised

Replies: 8

Last updated: 14 June 2012

Loss of appetite on Imatinib
by skiinglaketahoe (Jun 14)

Hi Peter

When I had these problems I did get checked out for plantar fascitis, I definitely didn't have that. There is a particular 'hot spot' present if you have that condition. My problems

by pstacey (Jun 14)

I also have problems with sore feet, particularly first thing in the morning. From trawling the web I have worked out that it is probably Plantar Fasciitis and I have used recommended stretching

by chrissie (Jun 13)

Hi Susan

I have definitely come to the conclusion along with my GP and, (having had a hospital appt today), with my haematologist also, that the burning feet is a side effect of Imatinib. The

by skiinglaketahoe (Jun 13)

Hi Chrissie

I was very interested to read about your foot issue. When I was on both glivec and dasatanib I had the most terrible problems with my feet. It started off as having very painful
Category: Uncategorised

Replies: 8

Last updated: 14 June 2012
JeffMowatt on 12 May 2012

Category: Uncategorised

Replies: 1

Last updated: 15 May 2012

Tasigna and BPH symptoms
by sandy craine (May 15)

I am not quite sure how to answer, can you tell me what you mean by BPH symptoms. Is it to do with benign prostate disease?

Best wishes,

Sandy

by JeffMowatt (May 12)

It could be coincidence, given that I'm the right age for BPH but it wasn't something I'd noticed until after taking Tasigna for a few weeks.
I thought at first it was having a diuretic effect on me
Category: Uncategorised

Replies: 1

Last updated: 15 May 2012
Pennie on 10 May 2012

Category: Uncategorised

Replies: 1

Last updated: 10 May 2012

iphone App
by sandy craine (May 10)

Hi Pennie.. see previous post on this with links etc.
http://www.cmlsupport.org.uk/node/7348
Best... Sandy

by Pennie (May 10)

Hi Can you tell me what the app is called? Being a techno phobe I can't find it = probably looking in the wrong place!

Thanks

Pennie
Category: Uncategorised

Replies: 1

Last updated: 10 May 2012
sparkypcl on 9 May 2012

Category: Uncategorised

Replies: 6

Last updated: 27 May 2012

Hay Fever
by RachaelB (May 27)

Hi everyone..following on this theme, does anyone know if there are any interactions with hayfever/anti allergy drugs and dasatinib? This is the first year I have ever had hayfever :-( It's rotten

by teddyb (May 26)

Glad to hear, and good luck with the Hay Fever, mine is almost at an end now as Birch "season" is almost over, thank god :)

by ruddoug09 (May 25)

I double checked with the hospital pharmacy yesterday and Loratadine (an antihistamine) is absolutely fine to take whilst on Imatinib.

by sparkypcl (May 10)

Hi Sandy and teddyb thanks for your comments, not sure if Benedryl is doing much for me so may go back to Piriton as I know it suits me - I do wish they would stop growing Oil Seed Rape around here
Category: Uncategorised

Replies: 6

Last updated: 27 May 2012
ruddoug09 on 9 May 2012

Category: Uncategorised

Replies: 5

Last updated: 10 May 2012

Where should I be after 18 months?
by ruddoug09 (May 10)

Many thanks Sandy, no doubt there will be a discussion with my doc in a few months but hopefully there will be an additional 0 in there! I only saw the registrar last time and he was quite happy

by sandy craine (May 10)

Hi Chris..
I bet you were surprised! All I can say is that this is a big problem for US patients. Labs there are not standardised with one another or use the IS.
The quest for international

by sandy craine (May 10)

First- your pcr track looks pretty good to me and shows a consistent downward trend, apart from March result which shows a slight rise on the previous result. I would say that you should discount

by ruddoug09 (May 10)

Thanks Chris for the reply. That seems very strange to see your results at 0.000% in the USA but then to be 0.17% in the UK.
I was 31 when I was diagnosed so I'm more relaxed to know that you are
Category: Uncategorised

Replies: 5

Last updated: 10 May 2012
tartancaddy on 8 May 2012

Category: Uncategorised

Replies: 4

Last updated: 10 May 2012

Digestion problems
by tartancaddy (May 10)

Thanks Sandy
This sounds really promising. I'll be heading to the local health food shop asap.
Thanks again
Gary

by sandy craine (May 9)

Hi Gary and Richard... there was a previous discussion on this.

I found the Apple Cider Vinegar totally dealt with the problem for me.... details in previous thread post below
http://www.

by tartancaddy (May 9)

Thanks for you comments Richard. I suppose i have to count my blessings in terms of side affects as it's manageable.
Thanks again
Gary

by Richard42 (May 8)

Hi Gary
I suffer these - not so bad now (3 years in) but still there. Both indigestion - which I take omeprazole for (and it works for me); and what I have heard rather euphamistically called "
Category: Uncategorised

Replies: 4

Last updated: 10 May 2012
sandy craine on 8 May 2012

Category: Uncategorised

Replies: 3

Last updated: 14 May 2012

Alexandra's post re pregnancy: reposted from below
by technician69 (May 14)

Hi Alexandra, My daughter was 28 weeks pregnant when she found out she was expecting. She was taking Dasatinib throughout, although she did say she was vomiting up the tablet as soon as she took

by cousineg (May 13)

Hi Alexandra,

You can obtain information at http://www.cmleukemia.com/cml-and-pregnancy.html. Pregnancy with CML is a big responsibility for a doctor. I hope that your hematologist is a

by sandy craine (May 8)

Alexandra,
I can understand why you are worried about conceiving whilst on TKI therapy- in your case Tasigna (nilotinib). The advice from the various drug companies is not to conceive before

by sandy craine (May 8)

Im Pregnant

Submitted by alexandra2012 on Sat, 05/05/2012 - 00:09.

Hi Debra!

like you I was diagnosed when I was 28 weeks preganat of my first baby, as soon as I gave birth, I
Category: Uncategorised

Replies: 3

Last updated: 14 May 2012
Vonnie46n2 on 6 May 2012

Category: Uncategorised

Replies: 1

Last updated: 7 May 2012

Brother dx with CML about a year ago. Need information.
by sandy craine (May 7)

Hi and welcome.
It is difficult to know exactly where to start. I cannot comment specifically about your brothers case as it is obviously complex,but I can try and give an overview- first of CML and

by Vonnie46n2 (May 6)

My brother was diagnosed with CML about a year ago when he was 18 (no health problems). He immediately started Gleevec, he has been taking it for awhile until recently. He had to go for two blood
Category: Uncategorised

Replies: 1

Last updated: 7 May 2012
sandy craine on 5 May 2012

Category: Uncategorised

Replies: 3

Last updated: 17 September 2012

fundraising Pages-JustGiving.com
by sandy craine (Sep 17)

Dear Rachael,
please pass on congratulations to Ian for
1) completing the run with a personal best time ;o)

and

2) Choosing CMLS Group to raise funds for.
I hope you and the kids

by RachaelB (Sep 16)

Thanks everyone for your support. Ian completed the Great North Run in 2 hours 4 minutes (personal best). Hot bath when we got home & awaiting the stiff muscles tomorrow :-)

by RachaelB (Sep 15)

Ian and I have arrived in the North East in readiness for the Great North Run tomorrow! Ian's running for the CML Support Group. He's just had a lovely pasta dinner and lots of water in preparation

by sandy craine (May 5)

Ian is running in support of CMLSg. Racheal (Ian's wife) is an active member of CMLSg and helped appeal the NICE FAD which refused dasatinib in 2nd line therapy.
Ian's page- http://www.justgiving.
Category: Uncategorised

Replies: 3

Last updated: 17 September 2012
Patricia Ormrod on 3 May 2012

Category: Uncategorised

Replies: 5

Last updated: 4 May 2012

Frequency of Hospital Appointments
by sandy craine (May 4)

Dear Trish,
I absolutely understand why you would feel nervous that Jack's appointment schedule is changing... I would feel the same if my daughter were the one with CML. However, given that you say

by Richard42 (May 4)

Hi Andy
My two BMAs were pretty hard work for me and the doctors involved: I have hard bones apparently, and the whole thing was very unpleasant. And with the second test two years ago, when I was "

by blueyes74 (May 4)

Hey Richard,

Great news on the three year anniversary. I had mine back in March.
I remember the first BMA as clear as day. They said "It hurts just a little bit." What liars! After the

by Richard42 (May 4)

Hi Both
I'm just coming up to my 3rd CML anniversary. At first, like everyone, I was seen frequently. After about 6 months this went to every 3 months and now it is every 4. My translocation is/
Category: Uncategorised

Replies: 5

Last updated: 4 May 2012
Debs on 2 May 2012

Category: Uncategorised

Replies: 2

Last updated: 4 May 2012

Hi All
by Lyndsey (May 4)

Hi Debs,

Just wanted to say hi and welcome to the forum and sorry about your recent diagnosis which must have come as a huge shock. I'm glad you have found the site and I'm sure you will find

by sandy craine (May 3)

Dear Debs... thanks for sharing your experience. Good luck for a continued good response to dasatinib and best wishes for a lovely holiday in Canada.
I am really glad that you have found this site

by Debs (May 2)

Just wanted to say hello, and thank you for this website/forum and all the useful information - its been invaluable.
A brief history: I'm 41 and was diagnosed 7 weeks ago after donating my usual
Category: Uncategorised

Replies: 2

Last updated: 4 May 2012
Alastair C on 2 May 2012

Category: Uncategorised

Replies: 1

Last updated: 2 May 2012

Anniversaries
by sandy craine (May 2)

Congratulations on all those milestones/anniversaries...actually maybe not the first one ;o) but especially the 3 years stable MMR at 0.00%.
Best of luck for a win with your league tennis match

by Alastair C (May 2)

Just back from my latest check-up at Durham, and noted a few anniversaries with my specialist I thought I would share.
It is 5 years since my diagnosis, just after my 50th birthday.
It took me 18
Category: Uncategorised

Replies: 1

Last updated: 2 May 2012