You are here

Forum

Pennie on 3 October 2008

Category: Uncategorised

Replies: 6

Last updated: 6 October 2008

3 log reduction !
by sandy craine (Oct 6)

Hi Pennie,

I am due to attend the upcomong ELNet conference in Cannes on 17th... it is specifically for CML and I am pretty lucky to be able to get access to this medical conf.

I will

by Pennie (Oct 5)

Hi Sandy ... Yep the tests for diabetes were done last week, and I am having a repeat 'starving' blood test tomorrow am. There seems to be some evidence that Gleevec keeps cholestrol and blood

by sandy craine (Oct 5)

Dear Pennie... that is really good news! Blood sugar levels can be effectively controlled by changing your diet..... did your doctor check for diabetes? I hope you can continue with Tasigna as it

by SwanValleySue (Oct 5)

the reason to keep of shellfish prawns etc is that they have a very high sodium level
You can have any fish with gills but not that of Salmon and Tuna as they are aslo high in sodium
If you look at
Category: Uncategorised

Replies: 6

Last updated: 6 October 2008
tadlaw on 1 October 2008

Category: Uncategorised

Replies: 8

Last updated: 7 October 2008

Reduced Intensity Conditioning Transplant
by tadlaw (Oct 7)

That's great information. I'll be visiting Hutch in a week. We're not making any decision on bmt yet, so I'll have plenty of time to head over to Minnesota as well! :-)
Much thanks.
Regards,

by sandy craine (Oct 6)

Hi Tracey,

There is a high level translant centre at University of Minnesota... see link below... who are at the cutting edge and have been doing both RIC sct's and umbilical cord as source of

by tadlaw (Oct 5)

Thanks for sharing your story Susan. I will keep praying that "cured" is the word to describe you, even if your consultant won't make that pronouncement just yet.
The information about the mini

by skiinglaketahoe (Oct 1)

Hi Tracey,
So sorry to hear about your son, I hope that the treatment goes really well.
I have had a reduced intensity transplant, almost 1 year ago and for me it was a very easy procedure with
Category: Uncategorised

Replies: 8

Last updated: 7 October 2008
chattena on 30 September 2008

Category: Uncategorised

Replies: 1

Last updated: 30 September 2008

Support Group
by sandy craine (Sep 30)

Hi Alison,

good to see another support group being set up. I agree it is important that should groups should be patient led.
Sandy

by chattena (Sep 30)

Update for Yorkshire Cancer Network CML patients.

I have now completed the Indepenent Nurse Prescribing course and my next project is to facilitate the development of a CML support group.
Category: Uncategorised

Replies: 1

Last updated: 30 September 2008
sandy craine on 27 September 2008

Category: Uncategorised

Replies: 8

Last updated: 30 September 2008

2 Year Old Son with CML chronic phase- post from another thread
by Michelle H (Sep 30)

Cell count down to 82.3. Relief for another week.

by Michelle H (Sep 30)

Hi Tad,
Sorry to hear about Ben. It must be incredibly hard supporting Ben through the various procedures and helping him deal with this emotionally.
If an expert in the field is happy with his

by jaynelister (Sep 30)

Hi Tadlaw,
Im so sorry to hear that Ben has been diagnosed with CML.
I think that what you are doing at the moment is exactly the right thing to do. Take as much advice from as many different people

by Michelle H (Sep 29)

Hi Jayne,
Thank you for your reply and completing my registration for the Children with CML support.
I'm hoping the white cell count will be down again tomorrow.
I don't know when we will take out
Category: Uncategorised

Replies: 8

Last updated: 30 September 2008
sue on 25 September 2008

Category: Uncategorised

Replies: 2

Last updated: 26 September 2008

new oncology unit at st james leeds
by cmlblogger (Sep 26)

St James (aka Jimmys) :)
sorry I can't help though
rob - http://cmlblog.spaces.live.com

by Pennie (Sep 26)

Hi Sue,
Sorry about the problems you are having setting up the support group. Could I suggest a temporary approach - that may put pressure on 'someone' is to have your first meeting in the clinic

by sue (Sep 25)

Does anyone go to the new oncology unit at st james leeds. I understand that all haematology services have gone over there now from the L G I. Also does anyone have any contact with the haematology
Category: Uncategorised

Replies: 2

Last updated: 26 September 2008
tadlaw on 24 September 2008

Category: Uncategorised

Replies: 6

Last updated: 30 September 2008

Pediatric CML & Concern about MRD
by tadlaw (Sep 30)

Dear Julie,
Thanks so much for your reply. You know, the issue with school is a big one for us too! In our case, Ben was diagnosed last year when he was preparing for an elective surgery on his

by julie hubbard (Sep 30)

Hi, my son was 9 when he was diagnosed. I have to admit that as the information out there was all quite bleak as it was for adults I hid my head in the sand so to speak and just concentrated on

by tadlaw (Sep 27)

It's so good to finally hear from someone with a child with CML. The forums on the children's site are a little bit old, though I've tried to make contact.
Anyway, the hem/onc feels that while my

by Parmjit (Sep 26)

Tad
My young son was diagnosed with CML at the age of 10. That was five years ago. As Sandy has suggested you may wish to post on the children's CML where you may find that you connect with other
Category: Uncategorised

Replies: 6

Last updated: 30 September 2008
L0U on 24 September 2008

Category: Uncategorised

Replies: 9

Last updated: 27 September 2008

Hi there ...
by L0U (Sep 27)

Hi Pennie ,

Would love to meet for a chat on the 6th , my appt is at 10.15 , so I will be in clinic from about 9.45ish.

Look forward to seeing you !
Best Wishes

Louise

by Pennie (Sep 26)

Hi Louise
I am at Kings for an appointment in another clinic on Monday 6th at 11am Could see you then if you want to? Good luck with all the info gathering !
Pennie

by sandy craine (Sep 26)

hi Lou,

don't worry about CML or MPD being hereditary... the sort of damage to the stem cell that most researchers think is the cause of these diseases is an aquired damage.... but nobody is

by L0U (Sep 26)

Hi Pennie

Thanks for your reply & Yes I am sure Prof Mufti & his team will do all they can to sort this out.

I will ask Janet when I next see her about the support group etc .
Category: Uncategorised

Replies: 9

Last updated: 27 September 2008
sandy craine on 24 September 2008

Category: Uncategorised

Replies: 4

Last updated: 30 September 2008

predict response to imatinib in chronic myeloid leukemia.
by sandy craine (Sep 30)

Good luck for Thursday Ali. I am sure all be go well. It is great that you have the chance to get to a specialist cml doctor.

Great to hear you are coming to the seminar. See you there ;o)

by Ali Loram (Sep 28)

Sandy, thanks for that. Both my husband & myself will be coming to the seminar and its a good excuse for a weekend in London!

I see my heamatologist this coming thursday when I shall be

by sandy craine (Sep 27)

Hi Ali,

yes it take time to learn the techinical stuff but it is worth trying ;o)

I do hope you will be able to attend the UK Seminar in London. It is a great chance to ask questions of

by Ali Loram (Sep 26)

Thanks sandy for posting the last 2 posts. I am sure (when i have translated them into a less technical language)they will be of great interest to me & others!

All the best Ali.
Category: Uncategorised

Replies: 4

Last updated: 30 September 2008
sandy craine on 24 September 2008

Category: Uncategorised

Replies: 1

Last updated: 24 September 2008

Pharmacologic markers and predictors of responses to imatinib
by sandy craine (Sep 24)

Blood.

2007 Dec 1;110(12):4064-72.

Epub 2007 Aug 30.
Most CML patients who have a suboptimal response to imatinib have low OCT-1 activity: higher doses of imatinib may overcome the

by sandy craine (Sep 24)

Pharmacologic markers and predictors of responses to imatinib therapy in patients with chronic myeloid leukemia.

Clark RE, Davies A, Pirmohamed M, Giannoudis A.
University Department of
Category: Uncategorised

Replies: 1

Last updated: 24 September 2008
Janet on 24 September 2008

Category: Uncategorised

Replies: 4

Last updated: 26 September 2008

PCR International Scale
by sandy craine (Sep 26)

Hi Zavie,

yes I agree, another good topic for this years Seminar in London. Are you attending this year?

Sandy

by Janet (Sep 25)

Hi Sandy
Yes it would definately be a good question to ask at the seminar. Great idea!
And yes, my husband and I are both going - wonderful excuse for a night in London at a nice hotel!! :-)

by zaviemiller (Sep 25)

Hi,
In addition to getting an international standardized PCR test established (which is still a long way off) it would be very useful if they could also standardize how the PCR results are reported

by sandy craine (Sep 24)

Hi Janet,

I am sure the UK CML clinicians that belong to the European Leukaemia Network (ELN) have been involved in this project to get a standarised test set up. I know that the Hammersmith
Category: Uncategorised

Replies: 4

Last updated: 26 September 2008
cmlblogger on 24 September 2008

Category: Uncategorised

Replies: 1

Last updated: 24 September 2008

Free presciptions in England for all cancer patients?
by sandy craine (Sep 24)

Hi Rob,

I really welcome this move.... prescription charges have been scrapped in Wales ... and soon to be in Scotland....

Thanks for posting the link to this article. Brown seems very

by cmlblogger (Sep 24)

Mr Brown trying to win Votes?
http://news.bbc.co.uk/2/hi/health/7631775.stm
assume that will include CML
so good news if he gets in, not sure what the other parties plans are
Rob - http://cmlblog.
Category: Uncategorised

Replies: 1

Last updated: 24 September 2008
KennyD on 22 September 2008

Category: Uncategorised

Replies: 2

Last updated: 5 October 2008

Face Ache!
by SwanValleySue (Oct 5)

Kenny
I do not get face aches
But at times I have a jaw ache, when I have back cramps or bone pain
I think for me it maybe a trigger from the body being

at stress from cramps so try and think

by sandy craine (Sep 24)

Hi Kenny, maybe this could be neuralgic pain caused by say, a small hole in one of your teeth or for some other reason that is not obvious?

I suffered this when I was younger... pre CML... and

by KennyD (Sep 22)

Hi All - does anyone else suffer from aching down one side of the face? I get it on average every 6 weeks or so, and it's usually accompanied by an uncomfortable swelling of the gums which lasts
Category: Uncategorised

Replies: 2

Last updated: 5 October 2008
alan hampson on 19 September 2008

Category: Uncategorised

Replies: 2

Last updated: 22 September 2008

Pensions
by alan hampson (Sep 22)

David,
That is just what was being discussed, and at the time of the conference last Nov it sounded as though CML would still be considered as an illness which could reduce life expectancy. I'll

by David (Sep 22)

Alan - were you thinking of the possibility of getting a higher pension (from the same fund) by reason of people with health problems that might reduce their life expectancy? I am not sure how

by alan hampson (Sep 19)

At the CML conference in Edinburgh last November, the topic of pensions came up during discussion with fellow patients. I can't recall the details, but it did sound as though there was some form of
Category: Uncategorised

Replies: 2

Last updated: 22 September 2008
Phil Poole on 14 September 2008

Category: Uncategorised

Replies: 5

Last updated: 22 September 2008

Fifth CML Anniversary.
by jaynelister (Sep 22)

Hi there, This is a heartwarming story and I am so pleased for you Phil. Having inner strength really does help too.
Aaron (my Son - 15 yrs at diagnosis) was also diagnosed 5 years ago and we have

by sandy craine (Sep 15)

Dear Annie,

Good to hear you are doing so well and will also be marking a 5 year anniversary. Lots of luck with the half marathon... and fast recovery from your hamstring injury!
Best,

by sandy craine (Sep 15)

Hi Phil,
Thanks for telling this story. As time goes on the story of CML since the Glivec era gets better and better, and I hope that in the near future those diagnosed with other cancers will also

by Annie Kennedy (Sep 15)

Congrats Phil - my story is very similar. In fact I don't know my exact anniversary date as I did not want to remember it at the time - I also received the pre-Glivec era 3-5 years life expectation
Category: Uncategorised

Replies: 5

Last updated: 22 September 2008
fehr on 13 September 2008

Category: Uncategorised

Replies: 7

Last updated: 28 September 2008

Eyes
by fehr (Sep 28)

Thanks all for your responses. It turned out that the infection was not bacterial, but was adenovirus.
It was treated with strong prednisolone drops at 2 hour intervals and NSAID drops. The

by sandy craine (Sep 24)

Hi John,

hope your eyes are better?

Sandy

by skiinglaketahoe (Sep 17)

Hi John
I hope that you get sorted out today.
Susan

www.caringbridge.org/visit/susanleigh

by fehr (Sep 16)

Hi Susan,
Saw the eye man yesterday. Seems it's quite nasty. He took a swab and the result should be in tomorrow. In the meantime, he suggested doing nothing. I now have preservative-free
Category: Uncategorised

Replies: 7

Last updated: 28 September 2008
hcy0da on 12 September 2008

Category: Uncategorised

Replies: 1

Last updated: 15 September 2008

G-CSF
by sandy craine (Sep 15)

Hi Helen,

sorry to hear of your struggles with Glivec and low counts...
GCSF has been used for many years to support low white cell counts... I am sure it will help you continue to take

by hcy0da (Sep 12)

Does anyone have any experience with G-CSF and Dasatinib?
I was taken off Glivec because it wasn't working on the cancer [FISH 76% and PCR 30.1% after 1 year of treatment on Glivec] and my blood
Category: Uncategorised

Replies: 1

Last updated: 15 September 2008
Janet on 11 September 2008

Category: Uncategorised

Replies: 2

Last updated: 12 September 2008

Radiation in the workplace
by Janet (Sep 12)

Dear Paul
Thank you so much for your quick and reassuring response - I will email you if that is OK, and I would be very grateful if you could email me a copy of the risk assessment.
You have also

by Paul Ralph (Sep 12)

Hello Janet, Hopefully I can put your mind at rest as well as suffering from CML, I am a local authority Health and Safety Adviser in Scotland. During the school holidays I researched this subject

by Janet (Sep 11)

Dear All
I am hoping someone can help me with this one. I work in a school which is a single-storey building, and on the roof about 5m above my head a strange 'mast' has appeared over the summer
Category: Uncategorised

Replies: 2

Last updated: 12 September 2008
amanda1977 on 9 September 2008

Category: Uncategorised

Replies: 6

Last updated: 7 October 2008

New Member
by julie hubbard (Oct 7)

Hi Tracey my email address if you want to get in touch is julie@mason67.fslife.co.uk
Julie

by tadlaw (Sep 25)

Helo Julie,

You're the first person I've seen with a young child with CML. My father just attended a conference in Boston, Mass sponsored by the European Hematologic Society on CML and none

by kathy (Sep 12)

Hi amanda,i was diagnosed at 26 im now 31 i also have a little boy who is 6 in november,if you would like to ask me anything then email me on kathy.prudence@homecall.co.uk .hope your ok its alot

by sandy craine (Sep 10)

Hello Amanda,

I am glad you have found this site so soon after your diagnosis. I am sure you will take some time to get to grips with it all and take on board all the information about CML.
Category: Uncategorised

Replies: 6

Last updated: 7 October 2008
SwanValleySue on 8 September 2008

Category: Uncategorised

Replies: 5

Last updated: 9 September 2008

Blood Test - Now PCRU
by sandy craine (Sep 9)

Hi Sue,

my pcr's have been negative for around 18 months now... but that is how it should be as I had a sib matched stem cell transplant (mini allo + glivec + DLI study at hammersmith) in

by SwanValleySue (Sep 9)

Thanks Sandy
I will add if you do not mind to the Australia Chat Group
A few other people have just made PCRU before me and also

maybe interested in this knowledge to discuss with their

by sandy craine (Sep 9)

Hi Sue,

IFN is an acronym for interferon.... sorry I should have explained. Interferon was used as front line treatment for chronic phase CML before Glivec and is self administerd by injection

by SwanValleySue (Sep 9)

Sandy
What is IFN and this type of treatment
Sue
Category: Uncategorised

Replies: 5

Last updated: 9 September 2008
Pennie on 5 September 2008

Category: Uncategorised

Replies: 3

Last updated: 8 September 2008

7 years since diagnosis
by sandy craine (Sep 8)

Hi Pennie,

Your post is very encouraging indeed and it is obvious that Tasigna has made a big difference to your quality of life. I am really happy to hear that you are responding to this 2nd

by johnh (Sep 6)

Thank you Pennie for your post. I'm about three years behind you and I have found your post very encouraging. I also found it very interesting that you changed to Tasigna after 5 years of Glivec.
So

by Janet (Sep 6)

Congratulations Pennie!
7 years and counting - here's to many more!! And I hope those zeros return for more lengthy stays as well.
Hugs, Janet

by Pennie (Sep 5)

Hi everyone,
As I sat this evening with the family I began to wonder just how far I will manage to get from that dreadful day of diagnosis. So far 7 years feels like a pretty good milestone to
Category: Uncategorised

Replies: 3

Last updated: 8 September 2008