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Sindi on 12 June 2017

Category: Uncategorised

Replies: 1

Last updated: 13 June 2017

New to forum- a few q's
by Harsh (Jun 13)

Hi harsh here,

I diagnosed with cml in blast phase in last week Nov 2016 and started on nilotinib 800mg/day.During the first 2 months I had rashes on my body like leg,around my neck, arms and

by Sindi (Jun 12)

Hi there,
I'm new to this forum so thought I'd say hi and thank you for all the helpful comments.
I was diagnosed in Dec 16 as an off chance blood test, I'm 31 years old and always been
Category: Uncategorised

Replies: 1

Last updated: 13 June 2017
David Fitz on 28 February 2017

Category: Uncategorised

Replies: 11

Last updated: 13 June 2017

Petechia - red dots on skin
by davewell (Jun 13)

Hey folks,
just an update on Petechia and clay.
I went to my GP for other Sprycel related issues, and since I was there I showed him my ankle.
He said that calendula-based ointments are good,

by davewell (Jun 12)

I hope compress it the exact term.
Basically, first you need to get the clay; I believe any clay might do, but the one that's usually sold for aesthetic/medical purposes is solum follonum.

by Philip (Jun 12)

Hi David: I have those red dots too. Glad to know the formal name now. Had them since being put on dasatinib - Sprcel since 2009. Mostly on my arms. Little bit on my chest. Does

by Sindi (Jun 12)

Where did you get the clay compress from? I've never heard of it. If you see my post above I'm keen to try anything! Glad it's helping :-)
Category: Uncategorised

Replies: 11

Last updated: 13 June 2017
Harsh on 11 June 2017

Category: Other conditions

Replies: 2

Last updated: 13 June 2017

PCR and leg pain
by Harsh (Jun 13)

Thanks Ellie Regina Grey for the wishes and the link to pcr

But still worried about my leg .There is swelling in my ankle without pain as I started to work from past days.I am again getting an

by Ellie Regina Grey (Jun 12)

Hello there,
I'm terribly sorry to hear about your bone pain predicament. I experienced similiar pain with sporadic itchiness (particularly in the stretch of bone of my shins) which thankfully only

by Harsh (Jun 11)

Hi everyone,

I had my 6th month PCR last week.My bcr abl reduced to 0.317% from 2.2 % from my 3rd month test.I am apprehensive that as per guidelines for 6 months is0 0.1%,but my onc told that
Category: Other conditions

Replies: 2

Last updated: 13 June 2017
ayaz ahmad magray on 10 June 2017

Category: Uncategorised

Replies: 3

Last updated: 11 June 2017

Platelets
by alliswell (Jun 11)

my mother had a similar situation with gleevec , her values was better( no neutropenia or no trompocitopenia ) but speed of dropping was so fast doctor decreased her daily dosage from 400 mg to 300

by ayaz ahmad magray (Jun 10)

Sandy thanks your adivice give me lot of suport when my platelets was very low.

by sandy craine (Jun 10)

Obviously, your doctor is, rightly, being cautious because you have only just started therapy. I think alternating the dose between 50mg one day and 100mg the next day is a rational approach until

by ayaz ahmad magray (Jun 10)

With decrease of dose of sprecel from 100 mg to 50mg my plateles increase in a one week from 15 to 50. And doctor advise me take one 50mg and next day 100mg fo two weeks and repeat cbc . Any one
Category: Uncategorised

Replies: 3

Last updated: 11 June 2017
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)

.

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