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Douglas G on 6 November 2009

Category: Uncategorised

Replies: 2

Last updated: 10 November 2009

treatment not working
by Douglas G (Nov 10)

Sandy

Thanks for the response.
Some history-As I said, I was diagnosed in Jan of '09. For about 7 or 8 mos, I was on Glivec and my blood counts stayed in line. A couple of months ago, they

by sandy craine (Nov 6)

Hello Doug,
It would be good if you could indicate the reasons your doctor gave for:

a. imatinib (Glivec) not working: resistant mutation? or some other reason?

b. dasatinib (Sprycel)

by Douglas G (Nov 6)

Hello people-I was diagnosed with CML Jan '09. Was on Glyvec for 7 mos before it quit working. After about a month on Sprycell, it's apparently not working and my Oncologists is about to put me on a
Category: Uncategorised

Replies: 2

Last updated: 10 November 2009
sal on 4 November 2009

Category: Uncategorised

Replies: 4

Last updated: 5 November 2009

Progression rates
by sal (Nov 5)

Thanks everyone for your quick and encouraging replies. We both feel much better now we have a greater understanding of what a great place CCR is to be.Rob's previous drs have always given the

by zaviemiller (Nov 4)

Hi Sal,
Maintaining CCR for a couple of years is as good achieving MMR.
These are not my words but the words of Dr. Druker.
I am always upset when doctors push their patients by increasing doses or

by Pennie (Nov 4)

Hi Sal,

I switched to Nilotinib 18 months ago, after 6 and half years on gleevec. My last PCR was ZERO ! It has been a long hard road since diagnosis in 2001, but I have got there. Tell Rob

by sandy craine (Nov 4)

Dear Sal,

It is my understanding that there are no data that show a significant difference between a stable CCyR and MMR over time. The longer a stable CCyR is maintained (and it seems to be
Category: Uncategorised

Replies: 4

Last updated: 5 November 2009
Basil from RSA on 3 November 2009

Category: Uncategorised

Replies: 1

Last updated: 4 November 2009

Still undetectable after six months off Gleevec
by sandy craine (Nov 4)

Hi Basil...... great news! hoping you see many many more 'undetectables'.
Enjoy your celebrations
Sandy

by Basil from RSA (Nov 3)

Hi all,

I would like to share my good news with the forum, Des and those who follow this thread.
I received the results of my last PCR today and the results are fantastic.

BCR-ABL 9-22
Category: Uncategorised

Replies: 1

Last updated: 4 November 2009
carmeplas on 2 November 2009

Category: Uncategorised

Replies: 5

Last updated: 16 November 2009

H1N1 flu
by Pennie (Nov 16)

Advice from both family doctor and hospital here in UK - to have the vaccine. As cancer patient in UK suggestion is to have 2 shots 3 weeks apart. Had my first today, no side effects so far.

by carmeplas (Nov 16)

Dear All,
H1N1 vaccine just arrived to Spain. Any of you have been vaccinated against this A flu?
David's oncologist is saying is not necessary, but his family doctor is advising him to do it, since

by sandy craine (Nov 5)

Dear Carmen..... I will contact you about a CML specialist in Barcelona.
I would say the it is more important to have the 'pneumovax' vaccine as it protects from the majority of pneumonia strains

by carmeplas (Nov 4)

Dear Sandy,
thank you for the information.

David suffered from severe bronchitis the past two weeks (he was scared as some bleeding appeared). Doctor never mentioned the possibility of
Category: Uncategorised

Replies: 5

Last updated: 16 November 2009
patriciamanning on 2 November 2009

Category: Uncategorised

Replies: 1

Last updated: 3 November 2009

new to the site
by sandy craine (Nov 3)

Hello Pat...... good to hear you are able to access the site again and that Brian is still doing so well.
I am not able to tell you if you should have heard from Nottingham with a confirmation..but

by patriciamanning (Nov 2)

My husband was diagnosed with CML IN 2002 and was treated first line with Glivec, he responded very well and his PCR's are all zeros and have stayed that way for this long.(600mg daily), he is well
Category: Uncategorised

Replies: 1

Last updated: 3 November 2009
sharon morris on 1 November 2009

Category: Uncategorised

Replies: 4

Last updated: 4 November 2009

CML in Yorkshire
by sue (Nov 4)

susan dickerson

Hi Sharon I totally agree with Chris and Sandy about Dr Graham Smith being the best cml specialist near Harrogate based at ST James Hospital Leeds. I see him myself and have

by sandy craine (Nov 3)

Hello Sharon,

so lovely to hear from you. How are your children?
I agree with Chris that Graham Smith at Leeds would be the best specialist near to Harrogate.

Prof. Hochhaus will be a

by sue (Nov 2)

susan dickerson

Hi Sharon and welcome to this site, I have noticed that Chris B has posted details of the Yorkshire Region Support Group web page I am involved with the running of this group

by chrissbb (Nov 1)

Hi Sharon,

I can give you details of the CML Support Group in Yorkshire, Sandy has our link listed on this site under the links tab on the left. But it is www.cmlyorkshire.webs.com All the
Category: Uncategorised

Replies: 4

Last updated: 4 November 2009
Anonymous (not verified) on 31 October 2009

Category: Uncategorised

Replies: 3

Last updated: 5 November 2009

CML in pregnancy and breastfeeding
by PhilB (Nov 5)

Congratulations on the pregnancy / commiserations on the CML

I'm afraid their are very good reasons why everyone wants you off the leukapheresis and onto the drugs as soon as possible. The

by sandy craine (Nov 3)

dear Anna,
Congratulations on your pregnancy. I understand that it might be tempting for you to extend the holding position of Leukopheresis so that you can breastfeed but I advise you to listen to

by sharon morris (Oct 31)

Hi Anna,
I was not able to breastfeed either of my babies. My consultant urgently recommended that I started Glivec straight after delivery which I did. In my second pregnancy, I lost my complete

by Anonymous (Oct 31)

Hi,

I've been recently diagnosed with CML during my pregnancy. Currently I'm 25 weeks with my 4th baby and can't start gleevec before the baby is born. T the moment to manage the situatiopn
Category: Uncategorised

Replies: 3

Last updated: 5 November 2009
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