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jamesashwell on 23 June 2012

Category: Uncategorised

Replies: 17

Last updated: 18 August 2012

2 years gleevec 400mg and whats going on
by chrissie (Aug 18)

After dx sept 2009 I reached 0.04 within 6 months. Since then my PCRs have fluctuated between 0.1 and 0.07 which i find somewhat frustrating. Like you I am loathe to move onto 600mg IM or Nilotonib

by karen (Aug 16)

Hi Sandy

I have to say David Marin is lovely, always happy to have an appointment with him!

K

by sandy craine (Aug 15)

Congratulations on the extra zero! You must be so relieved. I understand completely why you do not want to change to another therapy if imatinib suits your life-style and is -gradually- getting your

by teddyb (Aug 15)

I read in another forum that someone had contacted Dr Druker, and he said no more than 4 hours apart each day, but i would never take my pill 4 hours apart each day on a regular basis. (Gleevec)
Category: Uncategorised

Replies: 17

Last updated: 18 August 2012
Coyney on 22 June 2012

Category: Uncategorised

Replies: 5

Last updated: 2 July 2012

Penicillin - Post transplant
by sandy craine (Jul 2)

Hi Martyn,
Being 'Asplenic' just means you have had your spleen removed for one reason or another. Many people who have damaged spleens...i.e through road traffic accidents etc.... have to have them

by Coyney (Jun 30)

Hi Jo,
Thanks for the response; I hope your doing well.
As I said in my response to Sandy I also feel that my body will start to rely on it and I've done well so far without it. Don't get me wrong I

by Coyney (Jun 30)

Thanks for the response Sandy,
I'm the same, as I said in my initial post haven't taken Penicillin and have been fine with no infections for years. No I didn't have TBI which is why one of the

by sandy craine (Jun 25)

Hi Martyn,
I had my spleen removed at diagnosis and was told that I had to take antibiotics for life. I was not happy to do this and had quite a few disagreements with medical staff. I did agree to
Category: Uncategorised

Replies: 5

Last updated: 2 July 2012
ni2i on 13 June 2012

Category: Uncategorised

Replies: 12

Last updated: 23 July 2012

nilotinib
by sandy craine (Jul 23)

Hi Paul,
I think your lack of side effects might be because they are generally not the same on the different TKIs. So you will see the main side effects from imatinib disappear on nilotinib. You

by paul orourke (Jul 19)

Hi Sandy

just had second visit whith temp consultant.Still have trouble understanding her lingo.She sais that i am doing fine from my blood count, but i thought the only way that the can tell

by sandy craine (Jul 3)

Hi Paul,
I can understand your frustration and disappointment. It is hard to deal with a diagnosis of CML in the first place and made even harder when you are not responding fast enough to therapy

by cdw5000 (Jul 1)

Paul,
Welcome to the group. It seems like you're very frustrated and maybe a touch angry? I get the impression you're having difficulty understanding all the information being thrown at you, and
Category: Uncategorised

Replies: 12

Last updated: 23 July 2012
HAYLEY88 on 12 June 2012

Category: Uncategorised

Replies: 2

Last updated: 13 June 2012

PCR Results
by HAYLEY88 (Jun 13)

Sandy,

Thank-you for the advice ,we will talk to Dr at our local hospital at next appt on Mon 18th June. Appt at HH is not until 16th July ,do you think we should wait until then or try and

by sandy craine (Jun 12)

Dear Mary,
It look like he has a sub-optimal response as he is taking so long to get to the required low molecular levels ...a 3 log reduction from diagnosis.
As your husband has taken a full 12

by HAYLEY88 (Jun 12)

Hi , can anybody help and explain about PCR results to my husband and I ?

Try as we do we still find it a challenge to understad them.He was diagnosed in Nov 2010 and went onto imatinib 400mg
Category: Uncategorised

Replies: 2

Last updated: 13 June 2012
Ali Loram on 12 June 2012

Category: Uncategorised

Replies: 6

Last updated: 5 July 2012

BMB/SCT, bad news
by sandy craine (Jul 5)

Hi Lori,

good to hear your reaction to IFN is not too bad, and I hope as the dose is increased that this remains so. It might well be that IFN knocks your bcr/abl back to lower levels. I am

by teddyb (Jul 5)

I wish you the best of luck Ali.
When/if you are up for it, please report back after you have had your transplant and tell us how it`s going.

by Ali Loram (Jul 5)

Just to let you know I am now on interferon injections x 3 weekly and its not too bad! I know I,m on a fairly low dose but alls well. It will increase over the next few weeks/ months until a donor

by skiinglaketahoe (Jun 13)

Hi Ali
So sorry to read your latest update and to hear that you are still not responding to and unable to tolerate the drugs. I just wanted to wish you well if you go the transplant route. I, too,
Category: Uncategorised

Replies: 6

Last updated: 5 July 2012
HAYLEY88 on 21 June 2012

Category: Uncategorised

Replies: 16

Last updated: 23 April 2013

Travel Insurrance
by johnw1001 (Apr 23)

Hi Mary

Try Rothwell and Towler also known as World First who will accept CML as a condition for a reasonable surcharge.They have a website as World First.Suggest call them and do the medical

by David Fitz (Apr 22)

I'm not sure if this will help anyone, but I had my travel insurance with PruHealth before DX - and they have continued to provide cover for me, which includes CML cover with no additional cost.

by MikeAndreson (Apr 22)

Most of the travel insurance cover insurance for CML patients about £130.00. My wife had diagnosed in 2012 and we had a cover about £120.00 when we flew to UK for a month. I think if you really want

by jacqui from Colchester (Jul 15)

Hi

I have found a company called Rothwell and Towler 0845 9080171 As a family we went on a Carribbean cruise and it only cost £135.00 for the whole family. I have used them a few times
Jacqui
Category: Uncategorised

Replies: 16

Last updated: 23 April 2013
Ali Loram on 7 June 2012

Category: Uncategorised

Replies: 3

Last updated: 8 June 2012

Interferon
by chrissie (Jun 8)

Hi Ali
Sorry to hear that IM at a low dose isn't helping you. Lots of luck with the interferon and also here's hoping you can go to Italy next week.

Thinking of you, Ali,
best

Chrissiex

by Ali Loram (Jun 8)

Thank you Sandy, unfortunatley HH have said no to pegelated & advise alpha interferon. I think due to the intolerences I am having.
My BMB results are worse than expected & we are awaiting a

by sandy craine (Jun 8)

Hi Ali,
You could try asking if you can be treated with pegylated interferon rather than IFN Alpha.
Peg IFN is a more tolerable form of IFN and has a longer half life so you do not need to inject

by Ali Loram (Jun 7)

Hi,

it looks as if I am going to have to start on interferon in the next few weeks. I ve been on a reduced dose of Imatinib (due to intollerance, as usual for me) but its not controlling the
Category: Uncategorised

Replies: 3

Last updated: 8 June 2012
Ruth11 on 30 May 2012

Category: Uncategorised

Replies: 3

Last updated: 1 June 2012

White blood cell count 16
by sandy craine (Jun 1)

Dear Ruth,
I hope you find some support to enable you to go forward in a positive way. Relationships with those closest to us can sometimes be hard to maintain, especially when we feel under

by Ruth11 (May 31)

Hi sandy,

My stay in hospital was related to a mental Heath issue which was triggered by that appointment landing on my door mat. My life is in a bit of a mess now. I really don't think that

by sandy craine (May 31)

Dear Ruth,

I understand exactly how your feel, but first let me reassure you that you discharge sheet showing you wbc at 16 is not that high.... in the normal run of life, cold, flu virus and

by Ruth11 (May 30)

Hi All

I've had cml for 8 years and been in remisson on glivec for about 7 years. Feb 11 I changed to Nilotinib due to side effects. My last pcr was about 0.013 feb 12.

I saw my local
Category: Uncategorised

Replies: 3

Last updated: 1 June 2012
ni2i on 30 May 2012

Category: Uncategorised

Replies: 2

Last updated: 2 June 2012

Imatinib resistance
by ni2i (Jun 2)

Thanks Sandy I feel a bit better now, just hate all the waiting as i am sure we all do
Ni x

by sandy craine (May 31)

Hi Naomii,
T315i is the ultimate multi-drug resistant mutation and if you had it I am sure it would have been identified already.

There are other IM resistant mutations- which is why nilotinib

by ni2i (May 30)

Hi All
Me again and sorry for asking lots of questions recently, i promise i will be quiet soon ha ha. Ok as i posted previously my last bone marrow was showing that i was still at 20% and my last
Category: Uncategorised

Replies: 2

Last updated: 2 June 2012
Kate Obuffrey on 30 May 2012

Category: Uncategorised

Replies: 4

Last updated: 1 June 2012

CMML
by Simon Clayson (Jun 1)

My wife was diagnosed with CML eight years and one week ago (the date is ingrained in my memory) and has been taking Gleevec for almost all of that time with what seem to be the inevitable side

by cousineg (Jun 1)

There will be a clinical trial in Canada for CMML.

‘’He and oncologist Dr. Caroline Hamm of Windsor Regional Hospital are submitting their application to Health Canada for approval of a Stage

by sandy craine (May 31)

I am not sure where you are being treated but I hope it is at a specialist haematology centre?
CMML is a myeloproliferative disorder see list below. First of all it seems that a small number of

by Richard42 (May 30)

Hi Kate

I don't have it (I have CML) but my mother has CMML. I don't know your age but it's rare in younger people - my mother is 76 and I gather it is not that rare above the age of 70.
Category: Uncategorised

Replies: 4

Last updated: 1 June 2012
sandy craine on 24 May 2012

Category: Uncategorised

Replies: 1

Last updated: 24 May 2012

Patient preference for treatment of chronic phase CML: Phase ll Quantitative Survey- Reminder
by Debs (May 24)

Hi Sandy,
I spoke to Denise on Monday afternoon and completed the survey on Tuesday morning. It was all pretty simple and straightforward. Denise was very nice and the survey was nothing intrusive

by sandy craine (May 24)

This survey has recruited 15 participants so far, another 7 are needed to fill the initial quota.

Recruitment closes on 30th May so if you are interested in participating then please contact
Category: Uncategorised

Replies: 1

Last updated: 24 May 2012
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