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Vmexican1 on 1 July 2017

Category: Organising your life

Replies: 2

Last updated: 6 July 2017

Recently diagnosed
by Thompsog (Jul 6)

Hi Victor, I've just recently been diagnosed (3 weeks ago today), I started Imatinib tablets 2 weeks ago and so far so good, my blood test showed a reduction in my White Blood Cell by half in

by sprycml (Jul 2)

Hi Victor -
Welcome to the forums!
The short answer is, maybe. Right now standard practice is lifelong medication, but many tests are underway at the moment which seem to suggest that a

by Vmexican1 (Jul 1)

Hello, my name is Victor i literally was diagnosed the 27th of June. My most pressing concern is, am I doomed to take pills forever
Category: Organising your life

Replies: 2

Last updated: 6 July 2017
sandy craine on 27 June 2017

Category: Uncategorised

Replies: 3

Last updated: 6 July 2017

Your (first) name in lights?
by grells (Jul 6)

Hi there. I have just emailed the organisers as I'd be happy to take part. I might even go along since it's just down the road!

by sandy craine (Jun 29)

Hi David,
I'll add you to the list.... so far 3 so 7 places to fill. I can update that the organisers have now said that it is not essential that people need travel to London to have their

by David Fitz (Jun 27)

Sandy,
I'd be happy to, and of course already in London. But if we find more people than spaces, I'll happily drop off.
David

by sandy craine (Jun 27)

Janssen, a large pharmaceutical company with an interest in blood cancers, are supporting a public awareness event about this group of cancers at a major London visitor attraction at the end of this
Category: Uncategorised

Replies: 3

Last updated: 6 July 2017
MartinZA on 28 June 2017

Category: Side effects

Replies: 4

Last updated: 4 July 2017

Neck lump issues
by johnw1001 (Jul 4)

Hi Martin,
I may be able to add to what you are experiencing in that I commenced Glivec in 2007 and in 2012 experienced a swollen lymph node "a small posterior triangle lymph node but there was

by MartinZA (Jun 30)

Dear Sandy and Philip
First, thank you once again for replying to my posting and for the very good advice you gave. Sandy, I decided to go under the knife after all because I felt it was the

by Philip (Jun 30)

Hi Martin: I have been on dasatinab for a little over 8 years now. I did have some sensitivity in the lymph node areas especially under my arms. I've not experienced the degree which you have

by sandy craine (Jun 28)

Martin,
This must have been really worrying for you and it is good that you didn't have to wait around too long for the results of your biopsies. Very reassuring that they were negative and I assume
Category: Side effects

Replies: 4

Last updated: 4 July 2017
David Fitz on 4 July 2017

Category: Uncategorised

Replies: 0

Last updated: 4 July 2017

Art exhibition near Old St (London) by CML patient in aid of Bloodwise.
by David Fitz (Jul 4)

I might pop along after work and thought others in London might be interested. 50% of all sales go to Bloodwise.
http://curiousdukegallery.com/exhibition_show.php?ExhibitionID=125
Category: Uncategorised

Replies: 0

Last updated: 4 July 2017
David Ryner on 28 April 2017

Category: Uncategorised

Replies: 2

Last updated: 29 June 2017

Ponatinib: NICE publish their final recommendations
by David Ryner (Jun 29)

NICE have published final guidance on ponatinib today (see link below). The recommendation is as I posted in late April since there was not a successful appeal or indeed an appeal against that

by chrissie (Apr 28)

More good news. Thanks for posting, David. It does feel comforting to have 5 TKIs these days.
best
Chrissie

by David Ryner (Apr 28)

NICE have today published their final recommendations for ponatinib for adult patients being treated in the NHS in England.
We are very pleased to report that they have modified their initial
Category: Uncategorised

Replies: 2

Last updated: 29 June 2017
Naj on 24 June 2017

Category: Uncategorised

Replies: 6

Last updated: 29 June 2017

Newly diagnosed and sharing some experience with Tasigna
by cmljax (Jun 29)

I'm not even close to the 38 group (I am 64), but have been on Tasigna since Dx in October 2016. Response has been very rapid - MMR in 80 days; >MR 4.5 in 6 months. Side effects have been

by Naj (Jun 27)

Davide and Harsh
Thank you very much for sharing your experience . Knowing that people similar to my age are managing the CMl with positive results provides me good hope.
Good luck to all of us.

by Harsh (Jun 26)

Hi ,

I am 38 years old,diagnosed in last year NOV end and immediately started on nilotinib 400mg 2 times/day.I was dx with 31% blast cells ,345000 wbc count,45%bcr- abl.My prospects very

by davewell (Jun 26)

Hello!
Here's another member of the "diagnosed at 38" club, writing from Italy; not the best club to be in, but it's nice to have company :)
I was also diagnosed last year, April 2016; blasts at 5
Category: Uncategorised

Replies: 6

Last updated: 29 June 2017
markmcd on 25 June 2017

Category: About CML

Replies: 3

Last updated: 2 September 2022

Educational resources for children
by sandy craine (Jun 28)

Hi,
This is an interesting issue and I will attempt to highlight this as an unmet need at a meeting I will attend on Monday with CML clinicians- including one clinician who treats children with CML

by markmcd (Jun 27)

Thanks for taking the time to reply David - much appreciated - I'll keep on searching. Best regards, Mark

by David Fitz (Jun 26)

Hi Mark,
That's a great question. I am not sure there are many child-friendly materials around. Most of the material is geared towards adults, as they're the main patient group. The stuff that takes

by markmcd (Jun 25)

Hi everyone. I realise I may be going over old ground, but haven't managed to find anything suitable by searching the site or the web. I was diagnosed with CML 3 years ago (I have the T315i mutation
Category: About CML

Replies: 3

Last updated: 2 September 2022
ayaz ahmad magray on 27 June 2017

Category: Uncategorised

Replies: 1

Last updated: 27 June 2017

Reduced dose
by David Fitz (Jun 27)

I take Sprycel, and my counts a couple of years ago were very similar to your ones, thought your platelets were lower than mine.
But don't worry too much: WBC of 4.5 is within the normal range, if

by ayaz ahmad magray (Jun 27)

After taking sprycel from last 15 days with one day 50 mg and other day 100 mg. My count is hb 12.10 wbc 4500 and platelets 100000 and my doctor advise me to take now full dose 100mg each day. Any
Category: Uncategorised

Replies: 1

Last updated: 27 June 2017
iffat on 6 April 2017

Category: Uncategorised

Replies: 5

Last updated: 17 June 2017

slow response to imatinib
by David Fitz (Jun 17)

That's good news. Sometimes slow and steady can win the race!

by iffat (Jun 14)

hello David

i got my latest pcr and it was 0.6 pretty good enough to stay on imatinib.

Thanks for your support
Iffat

by EvaH (Apr 18)

I had a sub optimal response at 3 months (we switched to Tasigna but changed back to Imatanib after a few weeks due to eye bleeds) and a very good one by 6 months.
From a video on this forum, I

by iffat (Apr 6)

hi David

thanks for replying, your answer was very clear and relaxing that i am gonna do it one day :)

i will ask my dr about the international scale next time and send you my latest pcr
Category: Uncategorised

Replies: 5

Last updated: 17 June 2017
alliswell on 21 April 2017

Category: Blood tests

Replies: 8

Last updated: 14 June 2017

18th month PCR RESULT , A Blip and Next Step ?
by David Fitz (Jun 14)

Congratulations - that result is well into MMR territory! Excellent news.
David.

by alliswell (Jun 13)

i got the last result for PCR test today. and i guess the test of april was just a technical or lab sourced raise . not so good but definetely not bad. we are on track again .
29/05 gave sample for

by alliswell (May 23)

we made a small change to our program .
23/05 meeting with doctor (was today)
23/05 or 29/05 PCR test - as soon as i convince my mom to go to hospital again.
12/06 PCR Result and

by alliswell (Apr 28)

david hi and thanks again
yeap , your last message summarize all our history and dilemma.
not having MMR ( 18 month or later ) but if your trend is going down this is not an issue . on the
Category: Blood tests

Replies: 8

Last updated: 14 June 2017
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