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Harsh on 5 March 2017

Category: Treating CML

Replies: 3

Last updated: 11 June 2017

Bcr abl and bone marrow transplant
by Harsh (Jun 11)

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by Harsh (Mar 6)

Thank you for your detailed response and advice !!.I will enquire about Ponatinib and ABL001 clinical trials ,will wait for next pcr test results for SCT decision but will try to get HLA

by sandy craine (Mar 5)

Good news... you have responded well to nilotinib within the guidelines of less than 10% within 3 months. You next PCR result may well show a further drop so hopefully MMR (0.1%) before 6 months. As

by Harsh (Mar 5)

Hi sandy,

After your advice I spoke to my oncologist about BMT .He told to wait for for my 3rd month pcr test.If Iam in 2nd chronic phase we may go for BMT and if the blasts are less than 10%
Category: Treating CML

Replies: 3

Last updated: 11 June 2017
ayaz ahmad magray on 7 June 2017

Category: Uncategorised

Replies: 1

Last updated: 9 June 2017

By
by Philip (Jun 9)

I have been on dasatinib - sprcyel since February of 2009. My platelates have always run low since taking the therapy. I did not consider reducing dosage for years even though my

by ayaz ahmad magray (Jun 7)

Would decreased dose of dasatinib increase platelates in intial 2 months.
Category: Uncategorised

Replies: 1

Last updated: 9 June 2017
Karinne on 6 June 2017

Category: Treating CML

Replies: 3

Last updated: 8 June 2017

Stopping (or not) the medication?
by nigel (Jun 8)

Hi Karinne, Thanks for the post I would comment as follows.
Yes it seems 50% of patients will go back on treatment but of those so far 100% responded to treatment once more, that is many

by simy99 (Jun 8)

Hi
Diagnosed in 2003. 1st in Wales prescribed Glivec off trial
Nilotunib about 6 years ago down to 150g.
Went to HH nearly 3 years ago. Came off all drugs in Jan 2015.
Latest PCR (HH) is 0

by Philip (Jun 7)

I think that would be a great discussion

by Karinne (Jun 6)

Hello everyone,
I would like to open a discussion about stopping the TKIs outside of clinical trials.
I am amazed and worried at the number of entries about CML patients wanting to stop their
Category: Treating CML

Replies: 3

Last updated: 8 June 2017
EvaH on 5 June 2017

Category: Treating CML

Replies: 4

Last updated: 7 June 2017

Buying Imatanib in UK when you are outside NHS
by johnw1001 (Jun 7)

Hi Eva
I would suggest the following .Most private hospitals have a private GP service usually same day at a charge of about £75 minimum Why not discuss the validity of your Swiss

by David Fitz (Jun 6)

Be aware that there could be a VAT implication of importing medicine from Switzerland to the UK.
If you imported £5,000 worth of imatinib you could be liable for about £1000 of VAT

by EvaH (Jun 6)

Thanks, I'll check him out. I'm looking at a possibility to ship stuff out from switzerland but thought its better to have a back up plan and its great to have a name.
I've been

by David Fitz (Jun 5)

Eva,
Neither an A&E doctor or a GP would not be able to prescribe imatinib for you in any case. It can only be prescribed by someone with a specialism in the appropriate area - i.e. a
Category: Treating CML

Replies: 4

Last updated: 7 June 2017
MartinZA on 6 June 2017

Category: Side effects

Replies: 3

Last updated: 7 June 2017

Lumpy and grumpy
by MartinZA (Jun 7)

Hi Davide and Lucas
Thank you both so much for your detailed replies and for your reassurance. It's weird how I am like a different person in the week or so before I have to go for the

by Lucas (Jun 7)

Hey, Martin.
I have some words: as you know, i had problems with my response too and i had many "scaries" during my first two years. I have too had/have a lump and was really afraid

by davewell (Jun 6)

Hello Martin.
I was diagnosed in april 2016, in what they call "advanced phase", here in Italy at least: no real marker of the accelerated phase, so technically chronic, but a number of

by MartinZA (Jun 6)

Hi everyone

My 18 month PCR test is being done tomorrow, and this last week I've been experiencing two things that I hope are side effects and nothing more sinister. I would be
Category: Side effects

Replies: 3

Last updated: 7 June 2017
ayaz ahmad magray on 6 June 2017

Category: Uncategorised

Replies: 1

Last updated: 6 June 2017

Blood counts decrease
by David Fitz (Jun 6)

Hi there,
Dasatinib / Sprycel works very well on white cells, as you know. White cells are one type of "myeloid" cell, other main types being red blood cells and platelets. As the "M

by ayaz ahmad magray (Jun 6)

To start treatment for cml cp for newly diogonesed pateient with dasatinib/sprecel why all cell count decreases. It targets only wbc why rbc and platelets decreases. Any can explain me.
Category: Uncategorised

Replies: 1

Last updated: 6 June 2017
sg3 on 5 June 2017

Category: Uncategorised

Replies: 0

Last updated: 5 June 2017

turmeric/curcumin update
by sg3 (Jun 5)

Has anyone got up to date info as to whether this works? Can you take it with Nilotinib?
Category: Uncategorised

Replies: 0

Last updated: 5 June 2017
jenjen10 on 11 May 2017

Category: Getting help

Replies: 12

Last updated: 4 June 2017

New Diagnosis
by Philip (Jun 4)

Hi JenJen10: I was diagnosed with CML on 23 February 2009. I was in the accelerated phase. Like you, I was put on Sprycel, 100mg. By October of 2010, I had achieved CMR. CMR means

by jenjen10 (May 15)

Thank you so much! That hope is what I need right now.

by jenjen10 (May 15)

Thank you for going into so much detail. I feel like, even after 3 months, I really know nothing about this disease at all!!
Thanks for the US link, as well. As it turns out, my doctor, Dr.

by chrissie (May 13)

Hi Jen
There have been several CML pregnancies and one patient on the CML UK Facebook site has recently posted that she has now had what she calls 3 "cancer babies" - all healthy and
Category: Getting help

Replies: 12

Last updated: 4 June 2017
ayaz ahmad magray on 4 June 2017

Category: Uncategorised

Replies: 1

Last updated: 4 June 2017

Help
by Philip (Jun 4)

Hello: I replied to your other post on this question. Philip

by ayaz ahmad magray (Jun 4)

I was diagonosed cml cp in 20th april 2017 and doctor give me dasatinib 100mcg. After taking dasatinib a month my blood count is heamoglabin 9.9 wbc 5.4 and platelets drop two low 14000 and doctor
Category: Uncategorised

Replies: 1

Last updated: 4 June 2017
Philip on 4 June 2017

Category: Uncategorised

Replies: 0

Last updated: 4 June 2017

CMR Response and Discontinuation of Treatment
by Philip (Jun 4)

Hi All! Here’s my story.
I was diagnosed with CML on 23 February 2009 at age 48. I was in the accelerated phase well on my way to the acute phase. My WBC was, 354,000.00.
Category: Uncategorised

Replies: 0

Last updated: 4 June 2017
micheller on 20 May 2017

Category: Uncategorised

Replies: 1

Last updated: 3 June 2017

side effects of glivec
by sandy craine (Jun 3)

Hi,
I am not sure that loss of feeling in both legs and dizziness could be attributed to imatinib, especially as such symptoms could be caused by other health issues. I suggest you contact

by micheller (May 20)

I have been on glivec almost five years and recently lost the feeling in both legs it has returned however I am experiencing dizzy spells. Has anyone else had these experiences on glivec?
Category: Uncategorised

Replies: 1

Last updated: 3 June 2017
David Fitz on 25 May 2017

Category: Uncategorised

Replies: 1

Last updated: 25 May 2017

CML Horizons conference 2017: call for questions
by nigel (May 25)

Thanks David, looking forward to it. Additionally, I have heard today Professor Jane Applerley from the Hammersmith will also be speaking on fertility and a couple of other topics.
As David

by David Fitz (May 25)

Nigel Deekes and I are both attending the CML Horizons conference this year, which takes place this weekend (26-28th May). CML Horizons is a conference for patient advocacy groups (like CML Support
Category: Uncategorised

Replies: 1

Last updated: 25 May 2017
Steven Davies on 17 April 2017

Category: Getting help

Replies: 1

Last updated: 23 May 2017

Hammersmith CML Patient Carer Group Meeting Saturday 10th June 2017
by EvaH (May 23)

Hi
ID Like to attend, as I'm passing through London ...I sent an email but didn't get a response yet.
Thanks

by Steven Davies (Apr 17)

EVERYONE WELCOME to the LEUKAEMIA PATIENTS SUPPORT GROUP, The CATHERINE LEWIS CENTRE Reception Area (entrance at rear of main Hospital)
HAMMERSMITH HOSPITAL,
Du Cane Road,
London, W12 OHS.
Category: Getting help

Replies: 1

Last updated: 23 May 2017
Mitraa on 20 May 2017

Category: Organising your life

Replies: 2

Last updated: 21 May 2017

getting back to 'normal'?
by Mike B (May 21)

Hello Mitraa,
Having just been diagnosed 6 months ago and with a 2 year old of our own I understood this is a huge shock. I think David gives a great response. Education about how the medicine works

by David Fitz (May 20)

Hi Mitraa,
I think in the early days - and three months since diagnosis is certainly in the early days - it's totally normal to be stressed out quite a lot! I think it would be a bit strange to

by Mitraa (May 20)

hello to every one
im so happy to hear success stories from people trying to fight CML.
my husband was diagnosed with CML 3 months ago and since then i really try to manage my stress
i have a 3 year
Category: Organising your life

Replies: 2

Last updated: 21 May 2017
Mike B on 16 May 2017

Category: Blood tests

Replies: 4

Last updated: 18 May 2017

Stay course or switch TKI
by David Fitz (May 18)

Sounds like a sensible plan. Best of luck!

by Mike B (May 18)

Thanks for the comments. After meeting with my oncologist we are staying on Imatinib for now. She did say a case could be made to switch. We will check again in 6 weeks and again at my 9 month mark

by Olivia (May 17)

Hello and welcome, Mike
Personally, if you are doing OK on imatinib - and it sounds as if you are - I'd stick with it. I've been on it nearly 8 years now and have had no problems apart

by David Fitz (May 17)

Hi Mike,
There's no concensus on this really. Some studies suggest that reaching 10% (on the International Scale) by 3 months is desirable, and correlated with good outcomes. Others are of the
Category: Blood tests

Replies: 4

Last updated: 18 May 2017
Justine on 11 May 2017

Category: Treating CML

Replies: 5

Last updated: 12 May 2017

Newly diagnosed
by Justine (May 12)

Thank you, David. I just met a lady who "tolerated" Gleevec for three years but was miserable. She switched to a different one and had a much better experience after that. It is good to

by Justine (May 12)

And good luck to you! And to all of us! :-)

by Justine (May 12)

Thanks, I appreciate your words. Justine

by David Fitz (May 11)

Hi Justine,
As already mentioned, these are not uncommon side effects. For many people, they pass in their own time. For others, they don't.
I'm one of the others. Imatinib (Gleevec) didn
Category: Treating CML

Replies: 5

Last updated: 12 May 2017
David Fitz on 10 May 2017

Category: Treating CML

Replies: 0

Last updated: 10 May 2017

New Generic Imatinib Leaflet
by David Fitz (May 10)

CML Support have recently published a new leaflet on the topic of generic imatinib.
We will distribute this at patient CML clinics, so reaching a much wider audience of patients than are just
Category: Treating CML

Replies: 0

Last updated: 10 May 2017
Walkereyles on 27 April 2017

Category: Side effects

Replies: 4

Last updated: 5 May 2017

Bone Pain
by johnw1001 (May 5)

Hi Garry,
Yes have had a number of episodes like this and have been on Glivec for over ten years.First some years ago it was drug interaction Glivec and antibiotic Ciprofloxacin but it

by David Fitz (May 4)

Hi Garry,
Though of course as others point out, not every ailment can be CML or TKI related I do have some experience in this regard that was very much related.
A few years back, when I was

by Olivia (May 4)

I was suffering from sciatica, too, and my GP recommended Pilates as an alternative to physio. For me, it works a treat - and I didn't have the 12-week wait for NHS physio which is the

by sandy craine (May 3)

Hi Gary and welcome,
I am not sure that changing TKI from imatinib to dasatinib would effect your replacement hip. TKIs work in a very selective way and only target the abnormal cells by shutting
Category: Side effects

Replies: 4

Last updated: 5 May 2017
patriciamanning on 27 April 2017

Category: Uncategorised

Replies: 3

Last updated: 4 May 2017

new to the Forum
by johnw1001 (May 4)

Hi Patricia,
Regarding your husbands experience of a 600mg imatinib dose and musculo- skeletal issues with muscular pain my history and situation might be of some interest and use.
First you do not

by sandy craine (Apr 30)

Hi Patricia,
Firstly congratulations to your husband for maintaining his excellent response to imatinib. However, I do agree with David's point about 600mg being his dose over such a long

by David Fitz (Apr 27)

Hi Patricia,
Congratulations to your husband for maintaining all the zeros!
600mg of imatinib is a high dose. The usual dose is 400mg. Perhaps it's worth talking to his doctor about

by patriciamanning (Apr 27)

Hi
My husband wad diagnosed with CML in July 2002 and was lucky enough to recieve Glivec straight away. All these years later he is still taking 600mg daily and PCR testing is showing all the
Category: Uncategorised

Replies: 3

Last updated: 4 May 2017
chrissie on 24 April 2017

Category: Uncategorised

Replies: 3

Last updated: 25 April 2017

Different generics
by chrissie (Apr 25)

Hi Margaret
I'm hoping to go down to 300mgs in June. Pleased things are going well for you,
best
Chrissie

by MRB (Apr 25)

Chrissie - thank you for the reassuring information on generics from H@H. I received Intrapharm first, then Wockhardt! I have been reduced to 300mg - the 100 mg generic tablets are minute- much

by chrissie (Apr 24)

Just had an answer from both my haematologist and the cancer pharmacist at the hospital. What amazing care!!
All OK with either generic - and for those with H@H they apparently will send one of

by chrissie (Apr 24)

I have been taking Imatinib 400mgs from Wockhardt for the past month - my first month on the generic, and all has been fine. Healthcare at Home have just delivered my next month's supply and on
Category: Uncategorised

Replies: 3

Last updated: 25 April 2017