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Johannah on 17 November 2009

Category: Uncategorised

Replies: 3

Last updated: 17 November 2009

New Member
by Johannah (Nov 17)

Hi, thank you for your replies and welcomes. I didn't have an enlarged spleen. My platelets are now 3.27, wbc 5.19 and rbc 3.69 (which I believe is low). Hb level is 13.1. I feel so much better

by michael (Nov 17)

Hi Johannah did you have a enlarged spleen when you were dx in

August,can cause breathlessness as it can get pretty cramped in the rib cage.Oh and welcome to the group.

Michael

by kurt (Nov 17)

Hi Johannah, what is your red blood cell count? Mine was quite low at one stage, still is not where it should be, but it also causes me to run out of breath, as they increase I feel better.

I

by Johannah (Nov 17)

Hi, my name is Johannah, I am 55 and I was diagnosed with CML in August. Since then I have been taking Gleevec 400mg and my bloods have now stabilized. My red platelets especially were extremely
Category: Uncategorised

Replies: 3

Last updated: 17 November 2009
kestrel on 17 November 2009

Category: Uncategorised

Replies: 5

Last updated: 23 November 2009

Post-BMT chromosome abnormalities
by kestrel (Nov 23)

Thanks for replies. For me as Rio's carer, this post-transplant period is harder in some ways than the transplant - but I do believe we will get there one day. We can only keep on keeping on in the

by skiinglaketahoe (Nov 20)

Hi Kestrel
It was nice to hear how Rio is getting along. I know that you posted a short while ago and I meant to reply to you but never quite got there.
Anyway, I am glad that the PCR is slowly

by sandy craine (Nov 19)

Hi Kestral,
I know they like to see a rash or some evidence of low level GVHD which points to GVL ... but I never had any sign at all... by the 4th (I started with 2.5 million and ended with 50

by kestrel (Nov 18)

Hi Sandy,

Rio has had 2 DLIs so far and is due the 3rd in early Dec. I know the first dose was very very low. We haven't seen any GvHD, tho I would find a rash reassuring!! Apparently (I
Category: Uncategorised

Replies: 5

Last updated: 23 November 2009
amanda1977 on 15 November 2009

Category: Uncategorised

Replies: 5

Last updated: 17 November 2009

myeloidysplasia
by Annie Kennedy (Nov 17)

Amanda

I have no experience of Ninewells but the leading centre for CML in Scotland is Glasgow (Tessa Hollyoake) which is highly regarded. I attend the Western General in Edinburgh which I'm

by amanda1977 (Nov 17)

Pennie, thanks for sharing that link i will go have a look at it now, im being treated in ninewells hospital, dundee
Barbara, i have a bone marrow biopsy done every 3 months, i get blood tests done

by Barbs (Nov 16)

Hi Amanda

are you sure that you really have signs of myelodysplasia in your CML cells?

Some of us get chromosomal abnormalities in philadelphia negative cells & can show signs of

by Pennie (Nov 16)

Hi again Amanda
I have been thinking a lot about you over the weekend. I wonder if you have looked at Elizabeth Rees diary - look on this sites home page, scan down till you find the link. She is
Category: Uncategorised

Replies: 5

Last updated: 17 November 2009
sandy craine on 13 November 2009

Category: Uncategorised

Replies: 14

Last updated: 18 November 2009

NICE ACD- nilotinib/dasatinib this coming Monday.
by sandy craine (Nov 18)

Dear Richard,

firtsly I want to reassure you that you are more than likely to continue to have a good response to imatinib. The majority of CML patients respond very well and hold that

by sandy craine (Nov 18)

Dear Phil,
I am absolutely in accord with your points. I hope that others will be able to make the same or similar arguments about the inappropriate model that NICE is using and the points about the

by Sarah R (Nov 18)

Dear Phil and Sandy
I have just sent of letters of protest to the Secretary and Ministers for Health, the Chief Medical Officer, my PCT and our GP on behalf of my 17 year old son with CML. I have

by Richard42 (Nov 18)

I'm quite new to this (Dx May 09) but was shocked to read the summary in the NICE report. Every consultant I've seen (and I've seen about half a dozen) has said that if imatinib doesn't work there
Category: Uncategorised

Replies: 14

Last updated: 18 November 2009
drjamespotter on 12 November 2009

Category: Uncategorised

Replies: 3

Last updated: 19 November 2009

New member
by maryb (Nov 19)

Hi James,
I have only just joined the support group after hearing about it at the Nottingham Seminar last week. I too live near Derby. I was diagnoed a year ago and am on Imatinib. I suffer a few

by Richard42 (Nov 13)

Hi James
I'm new to the group too. Diagnosed in late May - like you after routine blood screen.
I had high platelets but only moderatly raised WBC at diagnosis - which is unusual but apparently I

by Vangogh (Nov 13)

Hi James

Welcome to our very exclusive club. I wish you every success with your treatment.

Tony

by drjamespotter (Nov 12)

Hello,
I am James and I live near Derby. I was diagnosed with CML 2 weeks ago after a routine blood test for a minor chest problem. Been on Imatinib 2 weeks with no side-effects and my white blood
Category: Uncategorised

Replies: 3

Last updated: 19 November 2009
Vangogh on 12 November 2009

Category: Uncategorised

Replies: 1

Last updated: 12 November 2009

Latest Results
by sandy craine (Nov 12)

Dear Tony....... great result. Enjoy your extra G&T.
best wishes,

Sandy

by Vangogh (Nov 12)

Hi

Just got my latest results of my bone marrow tests from Kings, very uncomfortable this time, but not painful. I just have a local jab, don't fancy being put right out. Anyway after 15
Category: Uncategorised

Replies: 1

Last updated: 12 November 2009
chrissbb on 12 November 2009

Category: Uncategorised

Replies: 4

Last updated: 14 November 2009

Nottigham Seminar
by bobosbo (Nov 14)

Have just got home from the seminar, & what a great day it was.

Very informative, with speakers who made it all very easy for the layman to understand. It was nice to finally speak with

by Barbs (Nov 14)

I hope that you all have a good day- look forward to hearing all about it

Barbara

by chrissbb (Nov 12)

Thanks for that Sandy. Its a shame you can't make the seminar, it would have been nice to meet you. I hope you make a speedy recovery from the nasty bug. Hope the websites get some feedback after

by sandy craine (Nov 12)

Hi Chris,

sorry to hear you are having strange effects from Glivec. I am sure you will be able to talk to one of the clinicians at the Seminar and get some kind of feedback and understanding
Category: Uncategorised

Replies: 4

Last updated: 14 November 2009
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