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leslie chambers on 19 July 2007

Category: Uncategorised

Replies: 2

Last updated: 1 August 2007

18 weeks off imatinib
by Belinda Whitting (Aug 1)

hi everyone, hope that you are all doing ok? my husband has been on gleevac for exactly a year. his last bone marrow tests showed that he is in complete molecular remission. can anyone explain what

by Elizabeth Rees (Jul 22)

Hi Les

Thanks for the update. I can see you carry on being a 'problem'. It is a very unusual situation, well for me anyway, your PcR is undetectable and yet you have all these other problems

by leslie chambers (Jul 19)

visited HH yesterday (18th) its been 18 weeks since being taken off imatinib & not much has changed,blood levels about normal for me ,but platelets at 157 are down from the dizzy hights of 185.(
Category: Uncategorised

Replies: 2

Last updated: 1 August 2007
hcy0da on 18 July 2007

Category: Uncategorised

Replies: 26

Last updated: 11 September 2007

New Member on Working
by derren (Sep 11)

Rob,
I am at James Cook University Hospital in Middlesbrough under Dr Millar and I have been having treatment for three weeks now and the blood levels are all starting to return to normal levels and

by mariansy (Sep 9)

Hi Helen
You ask what exercise I do - well I try and get to a bodypump (weights) class once a week, although college hours may well put paid to that and I do lots of walking. My previous job was

by cmlblogger (Sep 6)

Derren - hope all is going well and the holiday went ok, are you on any treatmnent yet? where are you being treated?
rob - http://cmlblog.spaces.live.com

by derren (Sep 4)

Rob,
Just read your comments and I find myself in exactly the same situation.
Was DX early last month (Aug 07) after attending a blood donor session. I gave blood on the Monday evening, Tuesday
Category: Uncategorised

Replies: 26

Last updated: 11 September 2007
technician69 on 17 July 2007

Category: Uncategorised

Replies: 2

Last updated: 18 July 2007

Mouth Ulcers
by technician69 (Jul 18)

Hi Sandy, thank you for that. I have contacted Beckys consultant and they are going to send a prescription through the post for something. I really get panicky about these things. Thanks for

by sandy craine (Jul 18)

mouth ulcers can be a sign of a low immune response. one way of helping ofset this is by encouraging Becky to supplement her diet with vitamins and minerals. Vit C is good and beta carotine too, for

by technician69 (Jul 17)

Hi everyone, I need some information please if anyone can help me. Becky has been on Glivec now for 5 weeks and she is okay, but she has developed a mouth ulcer. I went to the doctor to see if he
Category: Uncategorised

Replies: 2

Last updated: 18 July 2007
ivanbert on 16 July 2007

Category: Uncategorised

Replies: 4

Last updated: 18 July 2007

6-7 Month PCR Results
by sandy craine (Jul 18)

Ivan,

this is wonderful news for you and i must thank you for sharing your obvious elation with all of us.

so often we forget the fact that this drug has, and is still, saving a lot of

by zaviemiller (Jul 17)

Y A H O O O ! ! ! Y I P P E E E ! ! !
Number 1076 in the Zero Club
Zavie
Zavie Miller (age 69)

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

Gleevec since MAR/27/01 (400

by Elizabeth Rees (Jul 17)

Well Ivan you are a text book result of Glivec therapy. You have done extremely well. You can get on with your life and leave CML in the background.

You are having similar weather to us in

by Patricia Ormrod (Jul 17)

Ivan,

Congratulations, that is lovely news.

Trish.x
Category: Uncategorised

Replies: 4

Last updated: 18 July 2007
Patricia Ormrod on 14 July 2007

Category: Uncategorised

Replies: 27

Last updated: 25 September 2008

Children with CML
by Michelle H (Sep 25)

Hello all,
Our son who is nearly 3 years old was diagnosed with CML 3 weeks ago. He is a fit and healthy toddler and I only took him to the doctor because my mum noticed he had a firm tummy. I now

by kestrel (Sep 10)

Hi Mary,

I can identify with what you say about your son not wanting to talk about cml - Rio hates talking about it too, so we try to keep it all very low key. I sometimes think he would

by kestrel (Sep 10)

Hi Juanita,

I know Mary has registered with Jayne's new site - I think that makes 5 of us so far, but we're getting going! - have you got the details? It's childrenwithcml.org.uk.

Its

by juanitac (Sep 10)

Hi Mary,

No, my son isn't back at school yet, hoping to phase him back in from next week, then it will be almost 3 months since diagnosis. His back is getting slowly better, he is still quite
Category: Uncategorised

Replies: 27

Last updated: 25 September 2008
skipd on 14 July 2007

Category: Uncategorised

Replies: 2

Last updated: 19 July 2007

pancreatitus and Nilotinib(AMN107)
by skipd (Jul 19)

Thank you Elizabeth

I have restarted at 400mg a day. I have read of three others with the same effect here is example of some of the email

quote

Hi Skip, I'm the Ruth that Anjana

by Elizabeth Rees (Jul 16)

Hi Skip

Sorry to hear of your problems. Thank you for alerting us to this possible side effect of Nilotinib/AMN 107/Tasigna - I had not heard of this and will check it out with Novartis to

by skipd (Jul 14)

Good Morning/evening to all.

I thought that I would post this to anyone starting AMN107 (Nilotinib) trials. I would warn you that it can cause pancreatitus which is rather painful. I was put
Category: Uncategorised

Replies: 2

Last updated: 19 July 2007
v hird on 13 July 2007

Category: Uncategorised

Replies: 1

Last updated: 13 July 2007

calcium levels
by Elizabeth Rees (Jul 13)

Hi

Glad you found us and sorry that you had to. Calcium levels has been a problem for some patients. A good Calcium/Magnesium supplement helps and also helps with the cramps. I would say

by v hird (Jul 13)

Hi,

I am logging on for the first time although I was DX back in 2002 and have been on glivec for 5 years now. It's been going very very well - all tests clear for some time.
But for a year
Category: Uncategorised

Replies: 1

Last updated: 13 July 2007
Coyney on 10 July 2007

Category: Uncategorised

Replies: 3

Last updated: 15 July 2007

My son has measles. Any advice??
by mariansy (Jul 15)

Hi Martyn
How is Reece doing - measles is horrible - I had it as a child. Hope that you're okay too.
Thinking of you all
Marian

by Parmjit (Jul 10)

Martyn

Like Marian unable to provide a definitive answer, but would suggest that you seek medical advice from your BMT hospital. The protocol from our hospital for post BMT children is that

by mariansy (Jul 10)

Not sure here Martyn- but a few years back when James was 6 he had chickenpox and gave it to Tony. He was really very ill with it. I don't know if measles is worse for an adult than a child, but

by Coyney (Jul 10)

Hello all,
My 4 year old son woke up this morning covered in a rash which we think is measles. I just wondered if anyone thinks I should stay clear of him or not? I'm now 18 months post transplant,
Category: Uncategorised

Replies: 3

Last updated: 15 July 2007
cmlblogger on 9 July 2007

Category: Uncategorised

Replies: 1

Last updated: 9 July 2007

Elizabeth trying to email you
by Elizabeth Rees (Jul 9)

Our tech guy is away and I will ask him to have a look as soon as he returns.

E.

by cmlblogger (Jul 9)

but keep getting errors back, saying your inbox is full
this was to info at cmlsupport.org.uk, is that the best way to get in touch
rob - http://cmlblog.spaces.live.com
Category: Uncategorised

Replies: 1

Last updated: 9 July 2007
Steven D on 8 July 2007

Category: Uncategorised

Replies: 2

Last updated: 9 July 2007

Reply to my MP from the Minister of State (Reposted 27/09/07)
by David (Jul 9)

Stephen
Thank you for posting this letter here. As Elizabeth says, it is helpful.
I have a few additional comments.
A lot of the letter re-iterates what we already knew but there are many helpful

by Elizabeth Rees (Jul 8)

This is a good letter from Rosie Winterton and will give some ammunition to those seeking funding for Dasatinib. Thank you Steven.

Is there anyone out there having trouble with Dasatinib

by Steven D (Jul 8)

Please find copy of the wording received my my MP and forwarded to me.
Quote

"Thank you for your letter of 29 May to Patricia Hewitt enclosing correspondence from your constituent about the
Category: Uncategorised

Replies: 2

Last updated: 9 July 2007
Elizabeth Rees on 6 July 2007

Category: Uncategorised

Replies: 10

Last updated: 13 July 2007

Travel Insurance - Rob
by Des (Jul 13)

I was diagnosed in 2003 and for the last 2 years had annual cover with JD Consultants, underwritten by Fortis insurance.

This year however, Fortis revoked the cover and would not cover CML as

by fehr (Jul 12)

Age Concern turned me down flat.
John

by Steven D (Jul 10)

Thanks Janet,
I am looking into it. Our holiday this week is covered however there is a dispute about any further cover. They are looking into it for me.
I will keep you posted
Regards
Steven D

by Janet (Jul 9)

Hi Steven
I have one of these accounts as well, and took your advice a few months ago to get a letter in writing from them. However - I'm not sure if you are aware but the terms and conditions have
Category: Uncategorised

Replies: 10

Last updated: 13 July 2007
demagruder on 5 July 2007

Category: Reproductive health

Replies: 15

Last updated: 26 July 2015

CML during and after pregnancy
by demagruder (Jul 26)

Hello all, it has been quite a while since I originally posted my story. I never got back on here after posting it, but I now see a few people have commented since I told my story in 2007. Just 3

by sandy craine (Jun 19)

Hi,

I hope I can give you some encouragement. The known effects on the foetus from imatinib

(there is less data on the new TKIs but it is assumed that they carry the same level of risk)

by mgrattan (Jun 18)

Hi there, I have CML and was diagnosed in June of 2003 at the age of 14. I have been taking Gleevec/Imatinib since the day I was diagnosed. I am now 26 and thinking of my future and would like to

by francineb (Nov 21)

I am so happy that you had a success with both pregnancies. I have been diagnosed May 2006 with CML. I terminated a pregnancy in 2010 because I was on dasatinib and the Onc doctor did not recommend
Category: Reproductive health

Replies: 15

Last updated: 26 July 2015
fehr on 5 July 2007

Category: Uncategorised

Replies: 4

Last updated: 8 July 2007

Liquid intake - plain water
by fehr (Jul 8)

Thanks folks.

Point taken that plain water is best, although I guess when the water hits the stomach, it mixes with everything else in there anyway. Don't drink coffee and tea only if it's

by wkeeping (Jul 7)

John,
Plenty of liquid is definitely desirable. Water is best as obviously it has no toxins or anything to adversely affect liver, etc. However, if you really cannot get accustomed to that, I

by sandy craine (Jul 5)

hi Bil and John,

i do agree that it is quite hard to get into the habit of drinking plain water...... as opposed to all other liguids like juice tea coffee etc.

BUT it can be done... as

by Bill (Jul 5)

Hi John,
From experience I can tell you no matter how hard it is...drink the water...

I started off drinking water and found it AWFUL, in fact the high water consumption

made me nauseous
Category: Uncategorised

Replies: 4

Last updated: 8 July 2007
Bill on 5 July 2007

Category: Uncategorised

Replies: 5

Last updated: 9 July 2007

Cytotoxic?
by Bill (Jul 9)

Hi Rob,
Sorry it it took me so long to get back to your message, I missed it on the last log ins.
I got my insurance through the Post Office. It was really easy to do, I called their 0800 number

by sandy craine (Jul 6)

no, glivec is not considered to be a cytotoxic drug.

sandy C ;o)

by cmlblogger (Jul 6)

I am struggling to get insurance, probably due to holiday planned to the USA :(
rob - http://cmlblog.spaces.live.com

by carmeplas (Jul 5)

Hi all,

well Chemotherapy is refer to any chemical drug you use for treat cancer. From this definition, yes, Gleevec is chemotherapy.

The most important point of Gleevec, is that it was
Category: Uncategorised

Replies: 5

Last updated: 9 July 2007
carmeplas on 5 July 2007

Category: Uncategorised

Replies: 4

Last updated: 5 July 2007

Information
by Andrew A (Jul 5)

Hello Carmen,
I can relate to your dilemma, when I was first diagnosed, I done the typical bloke thing after being bombarded by all this advice and soldiered on, after all I was not feeling “unwell

by Bill (Jul 5)

Hello Carmen,
Side effects will vary from person to person, I have some slight fluid retention around the eyes and have had some pigmentation changes, but neither of these has been really

by Paul Cooke (Jul 5)

Hi Carmen,
I see from your earlier posts that it's your husband who has cml.

I am in a similar position in that it's my wife who has cml - diagnosed in September 2003, and is doing quite well

by Elizabeth Rees (Jul 5)

Hi Carmen

Fluid retention is a common effect of Glivec and if severe can be alleviated with a diuretic but your consultant will advise. Glivec also tends to affect the haemoglobin levels but
Category: Uncategorised

Replies: 4

Last updated: 5 July 2007
suzzie on 5 July 2007

Category: Uncategorised

Replies: 3

Last updated: 18 August 2007

low platelet counts
by skipd (Aug 18)

Hi Suzzie

Suzzie if your Hem Doc does not worry nor should you, Seriously I mean I have very low platelets, (118 would be wonderful if I could reach that level) My doc does not take me off

by suzzie (Jul 11)

Hi Elizabeth:

Thank You for your information. You put my mind at ease. It was just that I did not have any reduction in Platelets until now.

That would be since 1998, and then on

by Elizabeth Rees (Jul 5)

Hi Suzzie

You are one of the long standing Glivec patients. I am not too sure when you say your PCR is at log 5 what you mean. Is it 5.0 or 0.5 - hope it is the latter. Have you had a 5 log

by suzzie (Jul 5)

I wanted to know if anyone is having or has had a problem with low platelet count. Mine is dropping steadily, but my Oncologist has not said anything yet.
My recent PCR is a log 5

I do not
Category: Uncategorised

Replies: 3

Last updated: 18 August 2007
Paul Cooke on 4 July 2007

Category: Uncategorised

Replies: 5

Last updated: 8 July 2007

pcr testing
by Diana Green (Jul 8)

Diana G
Hi, Janet,
May I suggest that when those blood doctors pool (pun intended) their resources, they become a Coagulation of Haematologists?
Regards,
Diana

by zaviemiller (Jul 6)

Hi Paul,
Using the same blood draw or bone marrow draw I have the qualitative PCR come back as negative and the quantitative PCR as a 3 log reduction
This is pretty common.
Zavie
Zavie Miller (age

by Janet (Jul 4)

Hi Paul
It is a coincidence that you are enquiring about PCR testing since I also had some questions following my recent appointment at Llandough - I would be interested to know if Anne's experience

by mariansy (Jul 4)

On peripheral blood mine are suppose to be done every 3 months, but one got lost and one failed, so not an even run. Also they actually fall every 4 months - for example I had a BMB beginning of
Category: Uncategorised

Replies: 5

Last updated: 8 July 2007
carmeplas on 3 July 2007

Category: Uncategorised

Replies: 3

Last updated: 16 July 2007

echinacea
by valandi (Jul 16)

Anybody read anything about acai berries? I read an article about them in the weekend gloosy magazines as the next super food and was wondering if they were ok for people with CML?
My wife Val was

by carmeplas (Jul 3)

Hi Bil,
that's great. Actually I found that both places (Uk and US) are really informative, specially for those of us that have recently enter on this CML's world

We got the diagnostic for CML

by Bill (Jul 3)

Hello Carmen,

I post at this site mostly as it is UK based as am I.
Memorial Slone Kettering Cancer Center has a great website that you

can refer to. St. John's Wort is known to be

by carmeplas (Jul 3)

Hi all,
Echinacea is an herb native to prairie habitats in the United States. This herb is sometimes used as a natural antibiotic and immune system stimulator, helping to build resistance to colds,
Category: Uncategorised

Replies: 3

Last updated: 16 July 2007
Bill on 1 July 2007

Category: Uncategorised

Replies: 5

Last updated: 5 July 2007

leptomycin B
by fehr (Jul 5)

Interesting. My latest blood test showed raised urea and creatinine. However, I am also on Naproxen, which, I understand, can also cause this. I don't drink much and hate neat water. Time

by Bill (Jul 3)

Hi Sandy and Elizabeth,

Thank you for the update on this from the German conference. I have upped the water intake (it's amazing intitially how hard this was to do) but now it goes Ok. I have

by sandy craine (Jul 3)

i remember some excitement surounding this some years ago. apparently it kills cml cells very efficiently... in the test tube.... but the problem was possible unacceptable toxicity in humans......

by Bill (Jul 2)

Hi Elizabeth and Folks
Have a look at this:
http://bloodjournal.hematologylibrary.org/cgi/content/full/107/4/1591
Category: Uncategorised

Replies: 5

Last updated: 5 July 2007
carmeplas on 1 July 2007

Category: Uncategorised

Replies: 10

Last updated: 5 July 2007

Bone pain
by Andrew A (Jul 5)

Elizabeth,
SPIRIT is going fine, a bit of a roller coaster at the begining of the year as my whole system settled to the dual medication. I tend to fluctuate into Grade I bordering Grade II

by Elizabeth Rees (Jul 5)

Seems like the potassium in your banana helps. You could try also a good calcium/magnesium supplement.

You could try your multivit every day. Again people react differently to various methods

by fehr (Jul 5)

Hi Trish,
I have been on Glivec for approaching three months. I found that 30/600 co-codamol (Solpadol) worked well with leg pains. I also had a DVT, have bursitis and a hernia, all on the same

by suzzie (Jul 5)

For anyone suffering with bone pain. I had it real bad in the beginning. It would go into my groin area. It still comes and goes, but its not that bad anymore. I would get spasms in my feet that
Category: Uncategorised

Replies: 10

Last updated: 5 July 2007