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Eltoumy on 31 October 2009

Category: Uncategorised

Replies: 9

Last updated: 1 November 2009

Young CML and 6 weeks pregnancy
by sharon morris (Nov 1)

Hi again,
Unfortunately, I wasn´t able to breastfeed as I went back on Glivec straightaway as my consultant recommended. I am no longer taking interferon, just Glivec.
My babies say thank you for

by Hannah Bracegirdle (Nov 1)

Hi Weaam,
I am 28 Years old, I was dx with CML while I was pregnant with my third child two years ago. I had leaukepheresis once every two weeks until baby was born, at 35 weeks, then my

by Eltoumy (Nov 1)

Thanks for your information and i believe god only can lead me through this and will make me to deliver a healthy baby
my best wishes
Weaam

by Eltoumy (Nov 1)

Thanks very much for your answer and really i am happy to hear that about your babies, you make me feel better than before i hope that my baby will be healthy , i would like to ask you do you still
Category: Uncategorised

Replies: 9

Last updated: 1 November 2009
Olivia on 31 October 2009

Category: Uncategorised

Replies: 4

Last updated: 8 November 2009

Spirit 2 Trial, newly diagnosed
by jacqui from Colchester (Nov 8)

Hi Olivia
I am too on the Spirit II trail on dasatinib I have just started my 3rd month on the tablets and I am still coming to terms with it - although I find keeping positive helps and as many

by sandy craine (Nov 6)

Dear Olivia,

If you need any advice at all do not hesitate to ask here.

It might be a little early for you but there is a CML Patient and Carer Day on Saturday 14th November at

by Olivia (Nov 5)

Thanks for your response, Sandy
I have now signed up for Spirit 2, and been assigned to the imatinib group. I have just picked up the prescription and take the first dose tonight...

I am very

by sandy craine (Nov 3)

Dear Olivia,

I am sorry you have been diagnosed with CML, but you will do fine. It will take some time for you to learn all there is to know but gradually you will begin to understand.
I am
Category: Uncategorised

Replies: 4

Last updated: 8 November 2009
jmuir on 31 October 2009

Category: Uncategorised

Replies: 3

Last updated: 5 November 2009

glivec and bad teeth
by kestrel (Nov 5)

Rio, who was on Glivec for 2 yrs prior to having a BMT, had to have 8 baby teeth removed due to decay - and I know his diet did not include high levels of sugary stuff and that he cleaned his teeth

by Hannah Bracegirdle (Nov 1)

Hi Janice,
I cant believe this, I read your email last night and thought nope this hasnt affected me. However, just today while eating popcorn!! my tooth chiped. I never have any problems with my

by sue (Oct 31)

susan dickerson

Hi Janice I suppose gleevic could be the cause of yellowing teeth because of the colour and whats in the tablet. I always suffered with bleeding gums but in general my teeth

by jmuir (Oct 31)

hi i was wondering if anyone is experiencing bad teeth, my teeth have yellowed and broken down and chipped easily since i have been on glivec
janice

nz
Category: Uncategorised

Replies: 3

Last updated: 5 November 2009
lloyd152 on 29 October 2009

Category: Uncategorised

Replies: 9

Last updated: 16 November 2009

Dasatinib SPIRIT 2 Trial / Young CML patients
by technician69 (Nov 16)

Hiya, Becky seems ok on Dasatinib.. She really had enough of Glivec, was really fed up of the side effects, fingers crossed she will be ok now.. xxx

by kestrel (Nov 12)

Hi Dawn,

Good to hear news of you and Becky. I hope she feels a lot better on dasatinib. Rio used to get stomach cramps on imatinib too.

Thinking of you!

Take care,

kestrel

by technician69 (Nov 9)

Hi, my daugher 17 is going to be taking Dasatinib from today as Glivec was making her have terrible stomach cramps. I am not sure whether she is on a trial. Will find out later today when I see

by Eltoumy (Oct 31)

hi
I am 22 years old i got CML before 2 month after i got married and now i am pregnant

Im taking interferon (roferon-a) but i stopped the treatment until reach my fourth month

and i
Category: Uncategorised

Replies: 9

Last updated: 16 November 2009
jacqui from Col... on 29 October 2009

Category: Uncategorised

Replies: 9

Last updated: 1 November 2009

Flu Jab
by Vangogh (Nov 1)

Hi I had my flu jab 2 weeks ago, no side effects at all, apart from a sore arm for a couple of days.

Seeing my consultant tomorrow at Kings for a BMB will ask about swine flu.

Tony

by michael (Oct 31)

Never had a problem with the flu jab and this is my ninth year,(if you cant tolerate eggs tell the doctor as egg free jabs on request)

by bobosbo (Oct 31)

Jacqui,

I had my flu jab 2 weeks ago with no side effects, but this could just be good luck on my part.

Iknow that some people can suffer some mild flu like symptoms. I saw my

by jacqui from Colchester (Oct 30)

Hi Lloyd
After reading other peoples comments I am going to ask my consultant again about this on Tuesday - as my doctors are keen to give me the flu jab. My concern is that although my immune
Category: Uncategorised

Replies: 9

Last updated: 1 November 2009
karashan on 26 October 2009

Category: Uncategorised

Replies: 5

Last updated: 28 October 2009

no taste
by sandy craine (Oct 28)

As you live in North Wales you could get a referral to Liverpool Royal. The CML specialist there is Prof. Richard Clark.

I did not mean a cancer specialist I meant a CML expert clinician who

by Bhiru (Oct 28)

When my husband was first diagnosed we came across a booklet for cancer patients with information about diet and nutrition. One of the things it included was recipes for people who found they

by michael (Oct 27)

If at night hes drinking lots of water and going to the toilet alot Diabetes? has he got a enlarged spleen?

please get refered to a CML specialist centre,You could go back to your GP for

by karashan (Oct 27)

w davies we live in north wales we have asked the cancer specialist at the hospital and he said his sweating is nothing to do with his C M L but hes never sweated like this before hes been diagnosed
Category: Uncategorised

Replies: 5

Last updated: 28 October 2009
bobosbo on 23 October 2009

Category: Uncategorised

Replies: 4

Last updated: 29 October 2009

Falling platelet count
by michael (Oct 29)

Dasatinib and Sprycel are the same drug

by lloyd152 (Oct 29)

Hi Bob,
I'm on Dasatinib not Sprycel but within a month of starting my medication my platelet count was extremely up and down. It went from 3500 down to 32 within a few weeks! It has now reached a

by bobosbo (Oct 24)

Hello Michael,

Thanks for your reply, I will see what friday brings & go from there.

I have spoken with Jerry Mayfield, who was in the initial trial for Sprycel, in the USA.

by michael (Oct 23)

My platelet count has allways been low on Sprycel,dont worry to much about the 50 cut off,If your doing well in every other way you can drop lower,I have reached platlet counts of 39 with no
Category: Uncategorised

Replies: 4

Last updated: 29 October 2009
Bee on 23 October 2009

Category: Uncategorised

Replies: 19

Last updated: 21 January 2010

Glivec for only one month at a time?
by fehr (Jan 21)

My local Boots has now given me the remaining two months of my 3 month prescription in one go. It seems Novartis' problems are over.
John

by philcowtan (Jan 19)

It is a long time since my last post but thought I should mention my position regarding supply of Glivec.
Worcester Royal Infirmary have arranged my delivery of Glivec at 3 month intervals via BUPA

by vickiep (Nov 26)

I'm not able to access Boots as I live rurally and so use my local independent chemist. My oncologist gives me three separate monthly prescriptions as the local chemist can't finance all three at

by fehr (Nov 26)

I get 12 weeks' supply with no problems from my local Boots pharmacy. My hospital advised the crazy VAT situation a couple of years ago, so the hospital sends Boots the prescription and they get it
Category: Uncategorised

Replies: 19

Last updated: 21 January 2010
sandy craine on 22 October 2009

Category: Uncategorised

Replies: 1

Last updated: 22 October 2009

Devon PCT to recommend dasatinib and nilotinib in CML
by Ali Loram (Oct 22)

Hi Sandy, thanks for the information, this is really good news! And thanks for your involvement and the time you spent in providing the information the PCT invited you to put forward. Hopefully now

by sandy craine (Oct 22)

Good news for chronic and accelerated stage CML patients resistant to or intolerant of imatinib and who live in the South West........ let's hope that NICE will follow suit and give a positive
Category: Uncategorised

Replies: 1

Last updated: 22 October 2009
Hannah Bracegirdle on 21 October 2009

Category: Uncategorised

Replies: 6

Last updated: 22 October 2009

Dermatitus
by sandy craine (Oct 22)

Hi Hannah,

I meant my consultant not my GP. If you have questions about your results you need to ask your consultant as they often think that if you don't ask it means you don't want to know.

by Hannah Bracegirdle (Oct 22)

Whats the Zero club? Sounds good though!

by Hannah Bracegirdle (Oct 22)

Thanks for your replies everyone. Yeah the Doctor has prescribed a few creams, right now I am on Fucibet but can only really use it for ten days then have to come of it. But as soon as i stop

by zaviemiller (Oct 22)

Y A H O O O !!! Y I P P E E E !!!
Number 1280 in the Zero Club
Zavie
Please write me at zmiller@sympatico.ca
Thanks
Category: Uncategorised

Replies: 6

Last updated: 22 October 2009
sandy craine on 20 October 2009

Category: Uncategorised

Replies: 12

Last updated: 30 October 2009

CML and Fertility?
by kestrel (Oct 30)

Thanks Martyn.

Take care,

kestrel

by Coyney (Oct 29)

Hi,
Thanks for the replies. The appointment went well and it is ICSI we'll be going for in the new year as expected with a 30% chance of success, so fingers crossed!
Yes I remeber Rio well Kestrel.

by kestrel (Oct 28)

Hi Martyn

You probably aren't aware that you are a sort of 'beacon' for me! You might remember Rio, who went thru a BMT last year when he was 14 - you contributed to his guest book. He is

by sandy craine (Oct 28)

dear Martyn,

Good to hear from you and that you are doing well. Good luck with the ICSI consultation today. It is unfortunate that you have to pay. I know how strong the desire to have a child
Category: Uncategorised

Replies: 12

Last updated: 30 October 2009
chris murphy on 12 October 2009

Category: Uncategorised

Replies: 2

Last updated: 13 October 2009

dasatanib/rectal bleeding
by maccack (Oct 13)

Hi Chris
Has your husband suffered from hemorrhoids in the past?

It could be straining whilst having diarhhea has irritated it. With being on Dasatinib does he also have a lowish platelet

by sandy craine (Oct 12)

Dear Chris,

I am sure you are not overly 'sensitive' on the subject of blood evident in the stool... whether that be a small amount on the tissue paper used or more obvious signs.

I

by chris murphy (Oct 12)

Hi All

My husband has taken Glivec and dasatanib over the last three years. In that time he has always had a very upset stomach. He is now getting slight amount of bright red blood when going
Category: Uncategorised

Replies: 2

Last updated: 13 October 2009
chrissbb on 9 October 2009

Category: Uncategorised

Replies: 6

Last updated: 16 October 2009

Hi Everyone
by zaviemiller (Oct 16)

Y A H O O O !!! Y I P P E E E !!!
Number 1279 in the Zero Club
Zavie
The criteria for getting into the Zero Club is to achieve CCR (Complete Cytogenic Response). This means 0/20 pH+ cells via a

by lynnsch (Oct 15)

Congrats Chris!
I am a little confused with what the zero club means and would be grateful if someone could enlighten me please.
I was dx in May this year and started off with 56.4%, after 3 months

by zaviemiller (Oct 10)

Y A H O O O !!! Y I P P E E E !!!
Number 1278 in the Zero Club
Zavie
Please write me at zmiller@sympatico.ca

by zaviemiller (Oct 10)

Y A H O O O !!! Y I P P E E E !!!
Number 1278 in the Zero Club
Zavie
Please write me at zmiller@sympatico.ca
Category: Uncategorised

Replies: 6

Last updated: 16 October 2009
ypoulton on 9 October 2009

Category: Uncategorised

Replies: 16

Last updated: 8 November 2009

bmb
by fehr (Nov 8)

Each time I have had a BMB, I have asked for Entonox, a BOC breathing mixture of oxygen and nitrous oxide. It works well and reduces the pain to a slight discomfort. It gets out of the system

by Olivia (Nov 6)

I must have been very lucky - had my first one last week with local anaesthetic only, and though it was a bit uncomfortable for a few minutes I came away thinking "I've had worse fillings". No pain

by leslie chambers (Oct 14)

hi,all

I was dx 1995 but I only started keeping records in 2000, since then I have had over 20 bone marrow & aspirates. All the early ones were done with just a local anaethetic, but in

by kurt (Oct 13)

When I had my first BML I asked the doctor if this is ever done without anasthetic, he replied no, it would be considered assault, he reckoned no-one would lie there and take that without an
Category: Uncategorised

Replies: 16

Last updated: 8 November 2009
Pennie on 8 October 2009

Category: Uncategorised

Replies: 5

Last updated: 12 October 2009

PCR result help needed to interpret please.
by kestrel (Oct 12)

Fantastic news Pennie - has it sunk in????

Love kestrel

by skiinglaketahoe (Oct 9)

Nice news Pennie.
Keep going!
Susan

by Pennie (Oct 9)

Hi everyone
just got this email from my Oncologist.
'Good afternoon Pennie,

Yes, this is 0.000 , with a good sensitivity of more than 100,000

Best wishes.
All I can say is Wow, and

by zaviemiller (Oct 9)

Hi Pennie,
You need to now what the sensitivity of the PCR test is for it to have meaning.
If the sensitivity is 1 in 1,000 and you are PCRU it doesn't mean that you are PCRU if the sensitivity is
Category: Uncategorised

Replies: 5

Last updated: 12 October 2009
rebecca on 7 October 2009

Category: Uncategorised

Replies: 2

Last updated: 31 October 2009

When to stop taking Glivec before transplant?
by zaviemiller (Oct 31)

Hi Rebecca,
I asked Dr. Olavarria your question on your behalf and this is his response. I hope that it helps.
Zavie
zmiller@sympatico.ca
Hi Zavie,

Unfortunately, I do not check this email

by sandy craine (Oct 9)

As far as I know I think you can take Glivec pretty much up to the day you are admitted... but that would depend on your blood counts and how you are responding, and also on the transplant protocol

by rebecca (Oct 7)

I am hopefully having a cord blood transplant early November and was wondering how long do people stop taking Glivec before a transplant? I am currently on 800mg/day,
Thanks,
Rebecca
Category: Uncategorised

Replies: 2

Last updated: 31 October 2009
kurt on 6 October 2009

Category: Uncategorised

Replies: 15

Last updated: 1 November 2009

Recently diagnosed CML
by kurt (Nov 1)

Thanks Marian, good to know. I never read the 'grapeFRUIT' part, just saw 'grapes'. I heve never enjoyed grapefruit, so this will be no loss to me.

Wine in moderation, that's good. Thanks for

by mariansy (Oct 31)

It is grapefruit juice you need to avoid not grapes or their juice. As for wine I still drink it with my oncs knowledge. Just don't over do it as Glivec can be pretty tough on the liver, as is wine

by kurt (Oct 30)

I see grape juice is a big no-no, what about wine? Comes from grape juice so it could also be a no-no...

by kurt (Oct 25)

I need to start doing exrercise again, but being short of HB makes it difficult. I don't smoke, gave it up 8 years ago, and dring very little, maybe a beer a month, and dislike grapejuice anyway. I
Category: Uncategorised

Replies: 15

Last updated: 1 November 2009
Pesty on 5 October 2009

Category: Uncategorised

Replies: 4

Last updated: 7 October 2009

The contraceptive pill, Mayday, jabs and Glivec
by Pesty (Oct 7)

Hi all
I have just returned from an overnight stay at the hospital! I had the pneumonia and flu jabs on Monday afternoon at my GPs and by yesterday my temp was up to 39.4! After a quick check to

by Pennie (Oct 6)

Hi I live in Morden - and am treated at Kings College hospital. The dept is great and the Drs also. Share care should be a possibility if the journey is to much for regular visits. The PCR tests

by sandy craine (Oct 6)

You might want to read up on the latest EMEA guideline'S for vaccines regarding protection against complications of H1N1 flu virus. Look under Newswire.
I am sure the contraceptive pill is not

by karen (Oct 5)

HI there
Welcome to the wonderful world of CML!

Stopping/ changing taking the pill was never mentioned once to me and I have taken it throughout Glivec and now on Dasatanib. I too used to get
Category: Uncategorised

Replies: 4

Last updated: 7 October 2009
sandy craine on 4 October 2009

Category: Uncategorised

Replies: 2

Last updated: 12 October 2009

post by new member- from previous thread.
by kestrel (Oct 12)

I posted on the end of the previous thread, but now see it has been made into a new thread. Regarding DLA - it would be worth asking to speak to the hospital social worker. We did that and she

by Cathy Thomas (Oct 6)

Hi Karashan and welcome to the CML family.
My goodness you do have a lot on your plate! I do feel for you as I have come to realise that the families of CML sufferers often have as tough a time of

by sandy craine (Oct 4)

Hii am new to this site my

Submitted by karashan on Sat, 2009-10-03 07:50.
Hii am new to this site my husband is a CML sufferer to as a carer i find it very difficult to understand my husband
Category: Uncategorised

Replies: 2

Last updated: 12 October 2009
sandy craine on 2 October 2009

Category: Uncategorised

Replies: 2

Last updated: 4 October 2009

Pandemic influenza (H1N1)- EMEA website
by sandy craine (Oct 4)

dear Don...... thanks for your update and also for outlining how this pandemic is of an 'ordinary type' flu. I am glad... firstly that your grandkids have got through it without complication and

by Don Adkins (Oct 3)

Hi Sandy,
As I sit at home right now with a case of H1N1, I think how timely this article is. My case started Monday night after babysitting the grand-kids over the weekend. They were both

by sandy craine (Oct 2)

Please note the link under Newswire, to the EMEA (European Medicines Evaluation Agency) Pandemic influenza (H1N1) website
Category: Uncategorised

Replies: 2

Last updated: 4 October 2009