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Andy Parkin on 11 November 2009

Category: Uncategorised

Replies: 3

Last updated: 12 November 2009

Dr Brian Druker Interview with NY Times
by sandy craine (Nov 12)

Dear Andy and Dennis,
I agree with all you have said. We are so fortunate to have been able to benefit by the research that Brian Druker drove forward. I was treated by him in the initial trials of

by Dennis (Nov 11)

Sorry - double post.

by Dennis (Nov 11)

Very good article Andy. Pre Glivec days were very bleak indeed. Apart from the Flu-like symptoms of Interferon, there was a much wors side effect, - depression. It was a well known and accepted side

by Andy Parkin (Nov 11)

Sandy, I know you posted this as a story, but having read the article felt i had to post a comment. For those of us diagnosed post inmatinib , its an article like this, that reminds one of the
Category: Uncategorised

Replies: 3

Last updated: 12 November 2009
Pennie on 11 November 2009

Category: Uncategorised

Replies: 6

Last updated: 16 November 2009

H1N1 vaccine question
by skiinglaketahoe (Nov 16)

I haven't had any side effects from the vaccine, slightly sore arm but compared to my other pains it is nothing.
Susan

by kestrel (Nov 14)

Rio (17 months post-BMT) had the first of his shots on Weds and no side effects! Next shot is booked for 3 weeks after the first. His Consultant said he should have it.

kestrel

by skiinglaketahoe (Nov 12)

Hi
I have just had the vaccine at work - I work in the hospital where I am treated. As I am post BMT I thought it wise to get a letter from my haem. saying that I was able to have the vaccine.
The

by Ali Loram (Nov 12)

Hi Pennie, just returned from a visit to the consultant today. He recommends it as a single dose following discussion with the microbiologist. It would seem that although there is a slight reduction
Category: Uncategorised

Replies: 6

Last updated: 16 November 2009
hcy0da on 10 November 2009

Category: Uncategorised

Replies: 1

Last updated: 10 November 2009

Immune System
by sandy craine (Nov 10)

Take a look at wikipedia for an explanation of the common cold. .... see link below.
www.en.wikipedia.org
symptoms of cold/flu etc are signs that your body is mounting a defence against pathogens

by hcy0da (Nov 10)

I am a little confused about how the immune system works and was wondering if anyone out there knows the answer to the following.
I had a transplant back in May and was on immunosupressants for
Category: Uncategorised

Replies: 1

Last updated: 10 November 2009
hcy0da on 10 November 2009

Category: Uncategorised

Replies: 2

Last updated: 12 November 2009

Immune System
by kestrel (Nov 12)

Hi My son Rio had his BMT in June 2008 and has had colds lately. I guess it's just that time of year. Your immunity will build up gradually, but it's got a way to go after being completely wiped out

by skiinglaketahoe (Nov 10)

Hi

I am 2 years post SCT and whilst I can't answer your questions technically I can at least share my experiences.
I never suffered from colds pre transplant but have had 2 or 3 'whoppers'

by hcy0da (Nov 10)

I am a little confused about how the immune system works and was wondering if anyone out there knows the answer to the following.
I had a transplant back in May and was on immunosupressants for
Category: Uncategorised

Replies: 2

Last updated: 12 November 2009
jacqui from Col... on 8 November 2009

Category: Uncategorised

Replies: 2

Last updated: 9 November 2009

Rashes - Dasatinib
by jacqui from Colchester (Nov 9)

Hi Ali
It is claming down now and you are right I think it is definiteyly a reaction - I also had the flu jab that week which may of contributed

by Ali Loram (Nov 9)

Hi Jacqui when my meds were changed from Glivec to Nilotinib I had a very bad skin reaction all over. The worst was on my face & my skin was very red & raised. The drugs are so powerfull

by jacqui from Colchester (Nov 8)

Hi I am on the Spirit II trial and have been taking dasatinib for two months and although I feel fine I have had some strange things happend to me - my consultant thinks that i may be sensitive to
Category: Uncategorised

Replies: 2

Last updated: 9 November 2009
kurt on 7 November 2009

Category: Uncategorised

Replies: 8

Last updated: 7 May 2010

Red blood cell encouragement
by yogiB (May 7)

Hi Kurt

My HB has been low since starting Gleevec and I have looked into promoting it naturally - powdered greens are good.

Look on line for Barley or Wheat green powder. My HB went up when I

by kurt (May 6)

Aplogies, haven't been here for a while, I see the layout has changed...

Anyway, my progress thus far is I am now at a PCR of 0.55%, down from 39% at Dx. I have changed oncologists, had

by kurt (Mar 10)

My 2nd BMB tomorrow..not looking forward to it...

Me latest fbc showd my HB at 14....wonderful! And my platelets are up a bit from last time too, and my white cell are staying pretty constant

by kurt (Feb 8)

My HB has improved quite radically, it went from 8.3 in December, to 12.4 a month ago, to 13.1 today.

My platelets yo-yo a bit, but not low enough to warrant any action.

I'm not sure if
Category: Uncategorised

Replies: 8

Last updated: 7 May 2010
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