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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
carmeplas on 18 April 2017

Category: Side effects

Replies: 4

Last updated: 25 April 2017

Generic IMATINIB
by carmeplas (Apr 25)

thank you. It is being very useful, since some docs does not believe that generic may doing that.

by carmeplas (Apr 25)

It is nice to see, because our doc... does not care so much about the fact that some generic give harder troubles to patients...

by iffat (Apr 23)

i used gleevec for six months then switch to teva imatinib which is a generic drug.it seems that the side effects get more noticible for me,more puffy eyes,joint pain which i never had with gleevec.

by EvaH (Apr 19)

I had more nausea on Veenat, which is an indian generic, having taken imatanib before. I tend to like Sandoz imatanib over Teva, not sure why really...Zentiva Imatanib tabs are quite large for some
Category: Side effects

Replies: 4

Last updated: 25 April 2017
Jyellak on 12 April 2017

Category: Blood tests

Replies: 6

Last updated: 23 April 2017

Question about PCR plateau
by cmljax (Apr 23)

By the way, if you stay at MMR or better, you will most certainly die from something other than CML. Since you are better than MMR and PCR numbers continue to decline, why switch? It

by cmljax (Apr 23)

As long as your PCR's continue to improve, it would be premature to switch medicine and take on a whole new side effect profile. The newer TKI's (Tasigna and Sprycell) are stronger and

by EvaH (Apr 19)

I've had a very quick response so I cant really say much but have you watched this video?
http://www.cmlsupport.org.uk/videos/how-should-cp-phase-cml-management-b...
I found it very informative

by Jyellak (Apr 13)

Sorry I made a typo it's a 0.126 for the April number. Thank you for answering
Category: Blood tests

Replies: 6

Last updated: 23 April 2017
Greetje on 21 April 2017

Category: Treating CML

Replies: 2

Last updated: 23 April 2017

reducing dosage within a year after diagnose
by cmljax (Apr 23)

See my response to the post titled
Have you reduced your dosage due to deep response? Share your experience

by nigel (Apr 21)

First of all well done on some great results and the speed they have come, really good. A couple of points I would make; first of all it is a little early for does reduction in my view as yet,

by Greetje (Apr 21)

Hi, this is my first post. I'm diagnosed in october 2016. Start with Imatinib 400 at 22%, after 3 months 0.27%, now after 6 months 0.012%. I would like to ask my docter to reduce my
Category: Treating CML

Replies: 2

Last updated: 23 April 2017
Stacy.Langdon on 15 April 2017

Category: Treating CML

Replies: 2

Last updated: 23 April 2017

Diagnosed with CML @ 6 weeks pregnant
by Stacy.Langdon (Apr 23)

Update! 4 days interferon alpha 2b treatment complete and so far zero side effects other than some fatigue (which could also possibly be related to growing a human!! Feeling like myself and excited

by EvaH (Apr 19)

Welcome to the forum - keep the updates coming and I'm sure some of the pre-imatanib patients here will be able to relate the the interferon treatement.
All the best and stay positive!

by Stacy.Langdon (Apr 15)

Hi All!

New to the forum. Last week I was diagnosed with CML at 6 weeks pregnant. Routine Prenatal Bloodwork detected a high whiteblood cell count. Thankfully for a group of fast acting
Category: Treating CML

Replies: 2

Last updated: 23 April 2017
Avril Dailly on 19 April 2017

Category: Uncategorised

Replies: 4

Last updated: 21 April 2017

Wheat intolerance
by Avril Dailly (Apr 21)

Thanks Richard. Have been on imatinib since June and had terrible problems from the start. Was told it was side effect of treatment. However had macaroni at lunch one day followed by urgent need and

by Richard42 (Apr 21)

Hi Avril
Regarding diarrhoea, I experienced this - or at least "urgency" - while I was on imatinib. Usually a few hours after taking it. I did not experience it before and I have

by Avril Dailly (Apr 21)

Has anyone tried cutting out wheat to see if it stops their diarrhea?

by David Fitz (Apr 19)

Hi Avril,
No, I haven't and I haven't heard this from anyone else.
It is easy to blame ailments on CML or a response to TKIs. And while this is often right, and sometimes very serious
Category: Uncategorised

Replies: 4

Last updated: 21 April 2017
remw on 23 January 2017

Category: Treating CML

Replies: 4

Last updated: 21 April 2017

Destiny trial - successful so far
by Richard42 (Apr 21)

I had a couple of blips during the trial but they always went away, and some, when reviewed, were wrong anyway. Most peculiar - my consultant said they may have been "artefact".
I

by remw (Apr 19)

Just read my post and realised I did actually mean one year on half dose. I have about another 5 months left to go on the trial off Imatinib. One very minor blip in the figures this month, but

by sandy craine (Feb 1)

Thanks for posting your update - it is very good to hear that your have managed to maintain TFR, and hopefully will continue to do so. It is also good to know that you felt so good on half dose TKI

by Richard42 (Jan 25)

Hi there
Congratulations on great results.
I was a bit puzzled by your trial schedule though - I'm also on Destiny but for me (and I thought, everyone), it's been 12 months on half dose,
Category: Treating CML

Replies: 4

Last updated: 21 April 2017
EvaH on 20 April 2017

Category: Side effects

Replies: 0

Last updated: 20 April 2017

Anemia research paper
by EvaH (Apr 20)

I've been reading up on anemia, as mine appears to be persistent. Although its thought to be "simply" a side effect of imatanib, this paper from Czech republic suggests that post
Category: Side effects

Replies: 0

Last updated: 20 April 2017
Lynette on 15 April 2017

Category: Uncategorised

Replies: 4

Last updated: 18 April 2017

Facebook
by EvaH (Apr 18)

Do check if closed groups show up on your profile ie your friends will certainly not be able to see your posts in the group on fb but they very well might be able to see that you are part of

by Lynette (Apr 15)

Thanks Nigel - thanks for processing my request so promptly - I'm in! LB

by Lynette (Apr 15)

Good morning Nigel, thank you for your reply - I'll search for the closed page and apply to join up. Have an awesome Easter, Lynette

by nigel (Apr 15)

Hi Lynette, there are several CML support groups on Facebook, most are “closed” meaning only members will be able to see what is posted, so most feel happy to perhaps be a little more
Category: Uncategorised

Replies: 4

Last updated: 18 April 2017
EvaH on 7 February 2017

Category: Side effects

Replies: 4

Last updated: 18 April 2017

Update on my eye issues and side effects with Veenat
by EvaH (Apr 18)

I've now had an avastin injection in both eyes, leftie about one month ago and rightie one week ago. Vision problems seem to have completely cleared in the left, I still have some residual in

by EvaH (Mar 9)

Thanks Sandy!

I have since learned that high blood counts cause VEGF a protein which leads to neovessel proliferation in the retina - basically the starving retina grows its own vessels but

by sandy craine (Mar 9)

Good luck with the eye issues Eva... Please let us know how this additional therapy works,
Sandy

by EvaH (Mar 4)

Update 2: We ve moved on from lasers to treat my retina problems to an off-label use of Avastin injection to kill off all the abnormal vessels at once. At least I hope it will!
Category: Side effects

Replies: 4

Last updated: 18 April 2017
johnw1001 on 20 January 2017

Category: Treating CML

Replies: 5

Last updated: 18 April 2017

High Dose Glivec
by EvaH (Apr 18)

Curious about 61.4 WBC on diagnosis, is this the same as 614,000 /ml I wonder? What are the normal range of WBC using your measure (61.4)?
I ask because I try to figure out how badly off I was

by johnw1001 (Mar 24)

600mg Glivec leads to rapid regain of MMR and deep remission-update
Hi All,
Thanks to Eva and Bee for your responses and for the information on the impacts of higher dose Glivec.Just to update a few

by Bee (Feb 9)

Ted was on 800 mg of Imatinib for at least 2 years. He responded very slowly to 400mg for the first few years, never getting into single figures, but 800 mg sorted him out and brought his PCR

by EvaH (Feb 7)

ps: I also had 10 hours flying after diagnosis (with 2.5 million platelets) but no one thought to give me heparin....I wish they had, might have made my flight a little less nervewrecking :(
Category: Treating CML

Replies: 5

Last updated: 18 April 2017
cmljax on 19 February 2017

Category: Side effects

Replies: 9

Last updated: 10 April 2017

Skin Cancer - 7 and counting in 4 months
by David Fitz (Apr 10)

That must all feel encouraging - an excellent response to CML in a relatively short period of time.
Keep us up to date!
David.

by cmljax (Apr 10)

I am happy to report that after approximately 1 month on reduced Tasigna dose (from 600 to 450 MG), my PCR improved again from .006% to <.003%. The incidence of skin lesions has also

by cmljax (Mar 13)

After a lot of discussion with a lot of different people, some on this site and some on the LLS site, I decided to press my oncologist for a dose reduction from 600mg - 450mg after just 5 months on

by sandy craine (Mar 5)

I have sent you a private message today. It seems that there is some evidence of nilotinib and SCC but it is rare. You have a really good response to TKi therapy so you can be confident that
Category: Side effects

Replies: 9

Last updated: 10 April 2017
nozadze on 7 April 2017

Category: Uncategorised

Replies: 8

Last updated: 9 April 2017

Hope
by nozadze (Apr 9)

Thank you Sandy and all of you.
I hope everything will be ok. I wish you good health .

by sandy craine (Apr 9)

You should start therapy with imatinib as soon as possible after diagnosis. It depends on your fathers test results and whether he is in chronic stage or one of the later stages of this disease.

by sandy craine (Apr 9)

Hi,
I am sorry to hear your father has been diagnosed with CML - however, as Olivia and Chrissie have already said, imatinib is highly effective in treating CML and many of us on this forum have

by Olivia (Apr 9)

Hello
I don't think one month would make too much difference, but it is as well to get started on imatinib as soon as possible.
In the UK we are very lucky, we are given it by the NHS,
Category: Uncategorised

Replies: 8

Last updated: 9 April 2017
Daphne Lynn on 5 April 2017

Category: Blood tests

Replies: 2

Last updated: 6 April 2017

13 week test result
by Daphne Lynn (Apr 6)

Thank you Nigel for your reply. Following your information regarding the conversion rate and some more research this afternoon I feel confident that I now have the questions that I need to ask my

by nigel (Apr 5)

Hi Daphne, sorry to hear your numbers are not as low as recommended, however the first thing to find out is is this 24% raw number, or is it on the International Scale. For example the Hammersmith

by Daphne Lynn (Apr 5)

I was diagnosed with CML in December 2016 and was immediately prescribed Imatinib (400mg per day). I have just received my first molecular test result and following my research of CML I was
Category: Blood tests

Replies: 2

Last updated: 6 April 2017
blueyes74 on 17 March 2017

Category: About CML

Replies: 11

Last updated: 2 April 2017

Generic Imatinib
by chrissie (Apr 2)

That is an appalling error on the part of one of the hospital staff. To have caused you so much anxiety is not right and they should be made aware of this. Doesn't give you much confidence that

by David Fitz (Mar 30)

Wow - that is a large difference. So was it a clerical error somewhere, or were you just told the 0.2% figure verbally and someone misread the lab report?
Either way, good news and I am sure you

by blueyes74 (Mar 29)

It turns out the 0.2 was actually 0.029. I finally got a paper copy from the hospital.

by sandy craine (Mar 23)

Good news! - you must be very relieved.
As Nigel has already said, the move from the HH lab to another is most probably the reason for such a big change in your percentages! Nevertheless I agree
Category: About CML

Replies: 11

Last updated: 2 April 2017
jameskp on 19 March 2017

Category: Blood tests

Replies: 1

Last updated: 23 March 2017

CML patient for past 7 years last blood results shows Alpha-fetoprotein too high.
by sandy craine (Mar 23)

Hi Jams,
From a brief skim of the internet I have found the following information on raised levels of AFP and what that might mean. I hope the following is helpful.
Sandy
See links here

by jameskp (Mar 19)

Dear friends, My father diagnosed CML on 2010 and on imatinib til this date. He is 79 years old and 300mg imatinib worked fine for him so far. Apart from some digestion problem and nausea he is
Category: Blood tests

Replies: 1

Last updated: 23 March 2017
keithlatham55 on 18 March 2017

Category: Treating CML

Replies: 2

Last updated: 21 March 2017

cml re
by keithlatham55 (Mar 21)

yes and i understand that , i have spent many hours in waiting rooms looking round at people who have not been as lucky as me . my journey as been long and hard at times but the support i have had

by David Fitz (Mar 21)

Welcome, Keith!
Whilst unfortunately it's not the case for every patient, it's always great to hear from people who've been through a long and ultimately successful journey with CML.

by keithlatham55 (Mar 18)

hi just letting everyone know i'm a newbie on here and would like to share my experience regarding cml
i was diagnosed in 2002 .
Category: Treating CML

Replies: 2

Last updated: 21 March 2017