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Pennie on 2 August 2012

Category: Uncategorised

Replies: 5

Last updated: 7 August 2012

Elusive zero
by skiinglaketahoe (Aug 7)

Hi Pennie
Just wanted to say hello and it was nice to hear how you are doing. It is so nice being off TKI's. I found it quite scary to realise how bad I felt on them. Take care and I know that you

by Pennie (Aug 6)

Yep tried dose reduction, and changing around dasatinib/nilotinib. Having time out is OK but scary. I cant tolerate Interferon, but people who can often get decent reduction in PCR hope this

by Ali Loram (Aug 6)

Hi Pennie,

Sorry to hear you are having problems still. We seem to be so alike, although my counts are high, hence the wait for a BMT! Its good they are keeping a close eye on you.

Im

by Pennie (Aug 4)

Hi Lynn I think I have replied on the 'girls' group, but it might have got lost on the way!! Brain not in gear really. Speak soon I hope

Pennie
Category: Uncategorised

Replies: 5

Last updated: 7 August 2012
sandy craine on 1 August 2012

Category: Uncategorised

Replies: 1

Last updated: 16 August 2012

Brian Druker MD wins another prestigious science award
by gizmos mum (Aug 16)

Thank goodness we have people like Brian Duker in this world, who we owe our lives to.

by sandy craine (Aug 1)

Prize is Pitt School of Medicine’s most prestigious annual award
Brian J. Druker, MD, is the recipient of the 2012 Dickson Prize in Medicine from the University of Pittsburgh School of Medicine. Dr
Category: Uncategorised

Replies: 1

Last updated: 16 August 2012
Spitfire on 31 July 2012

Category: Uncategorised

Replies: 4

Last updated: 4 August 2012

New recruit!
by tony morgan (Aug 4)

Hi to all , just read your comment sue on felling weak and balance not quit right, to put you in picture , I was dx i14th dec 2009,started treatment jan 6th 2010. About aug 2009 I started a slight

by lynnsch (Aug 4)

Hi Sue and welcome to our club,
I was dx's in April 2009 and similarly to you responded well to Glivec but stuggled with the side effects. I took Glivec for about a year and a half and whilst the

by Spitfire (Aug 2)

Many thanks Sandy for your reply. I think it's been hard for me to make sense of what's going on and it's reassuring that you think the side effects seem difficult, as I have certainly been

by sandy craine (Aug 1)

Hi Sue,

thank you for posting your story so far. You have responded very well to imatinib as you are well within the latest research by D. Marin et al that cites for and optimal response less
Category: Uncategorised

Replies: 4

Last updated: 4 August 2012
ni2i on 23 July 2012

Category: Uncategorised

Replies: 1

Last updated: 24 July 2012

chewing gum
by sandy craine (Jul 24)

Hi Naomii,
Fingers crossed that your next pcr has lots of zeros.
Re: fasting and chewing gum. Given that gum is not a food as such and has no fat content....high fat foods present the biggest issue

by ni2i (Jul 23)

Hi All
Hope everyone is well. I have been on Nilotinib now for 6 wks with no side effects thankfully. I have not had any pcr results yet so don't know where i stand on that front. Anyway my question
Category: Uncategorised

Replies: 1

Last updated: 24 July 2012
jacqui from Col... on 18 July 2012

Category: Uncategorised

Replies: 2

Last updated: 22 July 2012

Lung Tap
by jacqui from Colchester (Jul 22)

Thanks Julie, Hope is all going well for you x

by gizmos mum (Jul 20)

Hi Jacqui

Sorry I do not know any thing about this but just to say hope it all goes ok and it was good and reassuring to speak to you the other day, and i wish you all the best

Julie

by jacqui from Colchester (Jul 18)

Hi

I have just had a lung Tap done (which wasnt too painful even without anesthetic). The liquid they drained from my pleural effusion in the lining of my lung was very cloudy it look liked
Category: Uncategorised

Replies: 2

Last updated: 22 July 2012
sandy craine on 14 July 2012

Category: Uncategorised

Replies: 1

Last updated: 16 July 2012

Travel FAQ
by sandy craine (Jul 16)

Please see updated Travel FAQ- I have added the world first as recommended yesterday.
If you have a recommendation please send it to me so I can continue to keep the Travel FAQ up to date.
thanks,

by sandy craine (Jul 14)

Thanks to Marsy's spreadsheet I have updated the Travel FAQ and included 2 new companies.

There has been a list of companies on the FAQ for some years, but I rarely get feedback on how the
Category: Uncategorised

Replies: 1

Last updated: 16 July 2012
teddyb on 13 July 2012

Category: Uncategorised

Replies: 2

Last updated: 14 July 2012

CX-5461 treatment for CML?
by teddyb (Jul 14)

Thank you Sandy.
Hope everything is well with you.
My 3,5 month checkup is coming up in 12 days, and i can feel myself getting a bit anxious as im hoping for a good response. Not easy to enjoy the

by sandy craine (Jul 14)

Hi Teddyb,

yes that is fine. see further posts about this below.
best wishes,

Sandy

by teddyb (Jul 13)

Some interesting news the last few days regarding CX-5461:
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=29700

http://www.abc.net.au/news/2012-07-10/newbreakthrough-gives-hope-to-
Category: Uncategorised

Replies: 2

Last updated: 14 July 2012
Ali Loram on 12 July 2012

Category: Uncategorised

Replies: 1

Last updated: 13 July 2012

Interferon pen problems
by sandy craine (Jul 13)

Hi Ali,
sounds difficult! It's stressful enough learning the techniques of self-injection without the technology being faulty or difficult to use as well. I suppose the fact that interferon is not

by Ali Loram (Jul 12)

Hi, I am using a Roferon pen to inject the interferon & am having terrible trouble with it. Its not just me as the hospital had trouble with putting in a new cartridge last week when trying to
Category: Uncategorised

Replies: 1

Last updated: 13 July 2012
cousineg on 10 July 2012

Category: Uncategorised

Replies: 1

Last updated: 13 July 2012

New blood cancer treatment to be tested
by sandy craine (Jul 13)

Yes I have seen this..... it is not yet in clinical trial but seems it will be in phase 1 later this year.
Cancer Cell Article Demonstrates First Definitive Evidence for Targeting of Pol I as New

by cousineg (Jul 10)

New blood cancer treatment to be tested

http://www.adelaidenow.com.au/technology/sci-tech/new-blood-cancer-treat...
Other link: Cure possible for Chronic Myeloid Leukemia (CML) ?
Category: Uncategorised

Replies: 1

Last updated: 13 July 2012
chrissie on 6 July 2012

Category: Uncategorised

Replies: 3

Last updated: 18 July 2012

WIN trial
by sandy craine (Jul 18)

Hi Bryan... disappointing for you I am sure.. but as you say, it might need a little longer to see the results. Hopefully over the next few months there might be a residual effect. I know when I had

by chrissie (Jul 18)

Hi Bryan
Many thanks for posting. So sorry the news wasn't more positive for you or, indeed, for the other 3 people at HH. It will be interesting to hear the results overall from Southampton.

by bc (Jul 18)

Just had my follow-up this morning on the WIN trial where they look at the results over the last 6 months of vaccines and see whether there is any value in continuing. Unfortunately I haven't

by chrissie (Jul 6)

Hi everyone
Just wondering if any of you lucky enough to have had the injections on the above trial have any news. I still trot along to the hospital regularly to give blood and get prodded and
Category: Uncategorised

Replies: 3

Last updated: 18 July 2012
sandy craine on 3 July 2012

Category: Uncategorised

Replies: 2

Last updated: 4 July 2012

Reminder for all those who took part in the recent Survey
by sandy craine (Jul 4)

Hi Chris,

thank you for donating your payment to us, it is very much appreciated. The easiest way to do it is is to ask Denise to transfer your payment directly to CMLSg account- bank details

by cdw5000 (Jul 3)

Sandy,
I got the email; however, I would like to donate the money directly to CML support. Can you advise the best way to do this? or would it be easiest to simply accept the payment from Denise and

by sandy craine (Jul 3)

Denise of 'Denise Salinger Research Services' has asked me to remind those of you who took part in the survey and have not already sent on your bank details, to send them to her so that she can
Category: Uncategorised

Replies: 2

Last updated: 4 July 2012
jacqui from Col... on 3 July 2012

Category: Uncategorised

Replies: 12

Last updated: 15 July 2012

What will happen to me now
by sandy craine (Jul 15)

Hi Jacqui... don't worry it is very easy to forget that this is an open access site. many people throughout the world read it (average number of individual visitors is upwards of 6500 per month

by jacqui from Colchester (Jul 14)

Thanks Sandy, hadden thought - sorry jacqui

by gizmos mum (Jul 13)

Thats brilliant, i will call you over the weekend, Julie

by jacqui from Colchester (Jul 13)

Hi Julie
It is nice to hear from someone who is local to me. Would love to meet up my mobile number is :::::
Jacqui
Note: for your personal protection please do not give out personal phone numbers
Category: Uncategorised

Replies: 12

Last updated: 15 July 2012
Adolfo on 27 June 2012

Category: Uncategorised

Replies: 2

Last updated: 30 June 2012

Rash with Nilotinib, from Portugal.
by RodM (Jun 30)

Hi, I started with Dasatinib and for the first 2-3 months had problems with skin rashes particularly on skin exposed to the sun. Keeping out of the sun definitely helped.
I also experienced what I

by sandy craine (Jun 28)

Hi Adolfo, and welcome to this forum. Please do not apologise for your English, it is excellent and certainly better than my Portuguese!.
Many people find that a skin rash is one of the side

by Adolfo (Jun 27)

Hello,
I'm from Portugal, and there are about 4 months I was diagnosed CML. I initially started treatment with Imatinib, but had a lot of muscle pain. Right now I'm with Nilotinib, there are already
Category: Uncategorised

Replies: 2

Last updated: 30 June 2012
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