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David Fitz on 29 July 2014

Category: Uncategorised

Replies: 6

Last updated: 8 August 2014

Drugs to avoid when on TKIs (article)
by sandy craine (Aug 8)

Hi Louisa,

Our policy is to protect our forum members privacy so we do not encourage posting private email addresses here as it is an open forum and anyone could access and use the email

by Luisa (Aug 7)

Sandy is right, I can access and download for free many "pay for" papers through the university but I cannot share the links.I don't know what the policy of this forum is regarding giving members

by sandy craine (Aug 5)

If you buy the PDF of a published document of this kind (with restrictions on use) you can't publish it or share it on a public platform like this. That is why I could not put it on our home page, I

by nithisevaguru (Aug 5)

Hi Luisa can you kindly share the document that talks about the drugs to avoid?
Category: Uncategorised

Replies: 6

Last updated: 8 August 2014
vickiep on 1 September 2014

Category: Uncategorised

Replies: 2

Last updated: 8 September 2014

Cholesterol
by vickiep (Sep 8)

Thank you Gerry, very Helpful. Any evidence to suggest that TKI's increase levels of Cholesterol in the first place?

Thanks

Vickie

by Gerry (Sep 2)

My experience with the statin Lipator and Glivec, was that the statin appeared to hang around in the liver for longer. My cholesterol went into the low end 3.1

I had gone down to the lowest

by vickiep (Sep 1)

What information, if any, do we have to support muted "evidence" that TKI's increase the level of Cholesterol? Also, I have seen a posting from the US suggesting that Sprycel increases the
Category: Uncategorised

Replies: 2

Last updated: 8 September 2014
ashu1103 on 27 July 2014

Category: Uncategorised

Replies: 1

Last updated: 31 July 2014

Probable cause of CML
by RodM (Jul 31)

Interestingly, I had both an X-Ray to find a kidney Stone about 30 months before diagnosis, and a further CT-Scan (which did find it) 24 months before DX. I was 15x normal white cells at DX and a

by ashu1103 (Jul 27)

HI all,

i am CML patient from India. In october i had donated blood at that time my CBC report were normal, but during a routine test in december my TLC was 96000 i have been a kidney stone
Category: Uncategorised

Replies: 1

Last updated: 31 July 2014
DanRosewarne on 25 July 2014

Category: Uncategorised

Replies: 14

Last updated: 30 July 2014

Recently Diagnosed from New Zealand
by Gerry (Jul 30)

Grapefruit affects your CYP3A4 concentrations - which can make your Gleevec etc hang around in your liver for longer. This means there is a potential that your side effects will increase.

http

by David Fitz (Jul 28)

A glass of grapefruit juice affects CYP3A4 concentrations for about 3 days - so needs to be avoided entirely, really. Seville Orange juice is nearly as potent (in CYP3A4 interaction terms) as

by David Fitz (Jul 28)

.

by ginger (Jul 28)

Dear Sandy,
I appreciate all that you write. I was diagnosed (shockingly as everyone else) in January, 2014 and am on Sprycel 100mg. Went from 100% to 20% to .385% to .365% in 6 mos and am now on a
Category: Uncategorised

Replies: 14

Last updated: 30 July 2014
Lucas on 18 July 2014

Category: Uncategorised

Replies: 13

Last updated: 14 August 2014

pcr-6 months
by ginger (Aug 14)

Dear Sandy,

Thank you for your information. It really helps me with clarity.

I was 100% at diagnosis; 20% IS a month later; .385% IS at 3 mos and .365%IS at 6 mos. I thought Sprycel

by sandy craine (Aug 5)

Dear Akash,
very good to hear you PCR result has continued to drop. I am sure you will see further reductions in BCR-ABL1 percentages as the months go on and will reach MR3 -0.1%- soon.

by ashu1103 (Aug 5)

hi sandy

i was very concerned after my 6 months pcr which was 1.4 , doc told me that it should be below 1 bcoz at 3 months it was 5.876, but i am relieved bcoz after 7month it is 0.781.

by Lucas (Jul 29)

hi ginger.
MCYR (less than 35% ph+) is the amount of ph+ in the marrow. A MMR is a pcr of 0.1% or less. Sprycel is a very good medication and you probably will hit MMR sooner than i. Good luck!!!
Category: Uncategorised

Replies: 13

Last updated: 14 August 2014
sandy craine on 15 July 2014

Category: Uncategorised

Replies: 9

Last updated: 22 July 2014

Prognosis for patients with CML and >10% BCR-ABL1 after 3 months of imatinib depends on the rate of BCR-ABL1 decline
by Lucas (Jul 22)

Well, i think this paper correlates with this one:
http://www.cancernetwork.com/chronic-myeloid-leukemia/bcr-abl-cutoffs-3-...
We all want to be fast responder but, as everyone says: it's a marathon

by sandy craine (Jul 22)

Thanks for your very helpful view on this Luisa, insightful as usual.
Sandy

by sandy craine (Jul 22)

I am really not that clear what the authors mean, but thinking about it- and I am no expert, baselines generated from samples taken at diagnosis often vary because it depends on how many normal ABL

by Lucas (Jul 21)

the response is individual. some people has great prognosis but fail and some people has a bad prognosis but get good responses. i think this paper show us another information: the importance to
Category: Uncategorised

Replies: 9

Last updated: 22 July 2014
sandy craine on 10 July 2014

Category: Uncategorised

Replies: 2

Last updated: 19 July 2014

Do you have questions about blood tests?
by sandy craine (Jul 19)

Ashu,

If you need an answer from the Susan LeClair, then you must click on the link in the above post.
However, I will try to help as far as I can.
I am not able to tell you what the 'EAN

by ashu1103 (Jul 17)

hi i am a cml patient

my pcr 3 months back was 5.876

recently it showed pcr 2.23 & below it was written IS-NCN 1.40 (europe against cancer )EAN standard scale

what does this

by sandy craine (Jul 10)

This is a great initiative from Patient Power. It's from their 'ask the expert' series- here you can ask Dr Susan Leclair questions about blood tests .....
Sandy
http://us2.campaign-archive1.com/?u=
Category: Uncategorised

Replies: 2

Last updated: 19 July 2014
Lucas on 8 July 2014

Category: Uncategorised

Replies: 2

Last updated: 10 July 2014

BCR-ABL Cutoffs at 3 Months Could Influence CML Treatment
by Lucas (Jul 10)

Hi, thomas! I read about your results!! amazing!! congrats!! i'm envy :p heheh.
I'm fine. my results by 3 months weren't optimal - not by the recent guidelines, but if we were in 2010 they were fine

by Thomaskk (Jul 10)

Hello Lucas
How are you doing with the world cup and CML ? Hope your side effects are minimum now and things are getting back to normal. Do keep in touch
Thomas

by Lucas (Jul 8)

For those, who like me, missed the 10% cut off at 3 months: There is hope. If you were a half log down from your baseline at 3 months, your prognostic is very good too:
Measuring changes in levels
Category: Uncategorised

Replies: 2

Last updated: 10 July 2014
David Fitz on 29 June 2014

Category: Uncategorised

Replies: 3

Last updated: 29 June 2014

Antihistamines and TKIs
by David Fitz (Jun 29)

Thanks Sandy - I'll give that a try. The way I view homeopathic remedies is that the worst they can do is nothing at all! So always worth a shot.

by sandy craine (Jun 29)

I suggest that you give homeopathic remedies a try. The following are often prescribed for hay-fever or pollen related allergy etc.
If the reaction is mainly centred on the eyes- itchy and/or sore

by chrissie (Jun 29)

Since taking imatinib (5 years this Sept) I have developed what was finally diagnosed as bad hayfever which, 2 years ago, prevented me from eating so bad had my nose become. I actually lost one and

by David Fitz (Jun 29)

At this time of year, I suffer from a bit of hay fever. Claratin (loratadine) has always been my "go-too" OTC drug in the past.
So, this year I've been getting the itchy eyes and runny nose more
Category: Uncategorised

Replies: 3

Last updated: 29 June 2014
sandy craine on 27 June 2014

Category: Uncategorised

Replies: 2

Last updated: 29 June 2014

CML Patients UK National Meeting The Sage Gateshead- 11/10/14
by sandy craine (Jun 29)

Look forward to meeting up again Olivia.
For those who are interested, Prof. O'brien may be able to offer travel and/or accommodation grants. If you think this might help you attend the meeting

by Olivia (Jun 27)

I've just booked, and am looking forward to it. Hope to meet a lot of you there.

Olivia

by sandy craine (Jun 27)

You can book your place here:

www.mpdmeetings.org
Category: Uncategorised

Replies: 2

Last updated: 29 June 2014
sandy craine on 23 June 2014

Category: Uncategorised

Replies: 4

Last updated: 27 June 2014

Interesting Article for those who take calcium supplements
by Gerry (Jun 27)

Interesting discussion, you usually find it happening the other way, (when an author talks about taking an additional supplement rather than getting it through their food intake). :-)

by darley (Jun 24)

No comparison!
I'm very disappointed to see junk science somewhere like this.
I'm VERY clear that it's the genius of innovative medical science that's kept me alive and about to celebrate 20

by sandy craine (Jun 24)

Hi, sorry you are disappointed, but if we only read peer reviewed articles and waited for the scientific community to catch on, then I don't think many of us would be here-

given the

by darley (Jun 23)

That's just written by a self proclaimed health "expert".
It's not a proper peer group reviewed scientific nor medical article.
The credibility (and even the authenticity) of the author is a bit
Category: Uncategorised

Replies: 4

Last updated: 27 June 2014
martin1960 on 19 June 2014

Category: Uncategorised

Replies: 1

Last updated: 20 June 2014

Targets
by nigel (Jun 20)

Hi Martin,
I like you am on imatinib, 2.5 years now. My results were slower than yours, 24% at 3 months and 15% at 6 months. We discussed a change but as I was / am very well and no side effects and

by martin1960 (Jun 19)

Hi everbody;

It would be good to get some feedback on the following
Today I was given my results as follows

At DX BCR ABL 66.5%

At 3 months 10.9%

At 6 months 5.1 %
Category: Uncategorised

Replies: 1

Last updated: 20 June 2014
Bee on 18 June 2014

Category: Uncategorised

Replies: 5

Last updated: 19 June 2014

!3 years today
by karen (Jun 19)

13 years is great - let's hope he has many many more to go
Kx

by sandy craine (Jun 19)

Hi Bee,
good to hear Ted is still doing so well. Thanks so much for the update and congratulations to you both on a wonderful outcome from an amazing drug. I think many may not be aware of just how

by Bee (Jun 18)

Absolutely!!

by Thomaskk (Jun 18)

Incredible. See you after another 13 years :)
Category: Uncategorised

Replies: 5

Last updated: 19 June 2014
sandy craine on 17 June 2014

Category: Uncategorised

Replies: 7

Last updated: 20 June 2014

2014 CML Patient meeting
by Thomaskk (Jun 20)

Hi
Immunotherapy and personalised therapy are the two fast emerging techniques in lukeimia. Can we get some update and directions on this ?
Thomas

by sandy craine (Jun 20)

Thanks David, Karen and Olivia. I think it will be a more successful conf. if it is designed around what patients want to know about. Your suggestions are good and I have sent them on to Prof. O'

by Olivia (Jun 20)

That is a really good idea. At the Glasgow event a couple of years ago there was a session billed (I think) as a discussion of side-effects, but which turned out to be a presentation by one fairly

by karen (Jun 19)

Not sure but how about a session on transplants? I know there are other forums but people often have it at the back of their minds and an overview may be of interest?

Also a session for those
Category: Uncategorised

Replies: 7

Last updated: 20 June 2014
David Fitz on 12 June 2014

Category: Uncategorised

Replies: 1

Last updated: 14 June 2014

Interesting article about developments of "personalised" medicine for CML
by cdw5000 (Jun 14)

Thanks for posting David; I find these articles uplifting and it's yet another potential path to an even more effective treatment.
C

by David Fitz (Jun 12)

"THE “game-changing” discovery of a new way to kill leukaemia cells is the first major breakthrough at the $200 million South Australian Health and Medical Research Institute.
The results will bring
Category: Uncategorised

Replies: 1

Last updated: 14 June 2014
Mo on 12 June 2014

Category: Uncategorised

Replies: 2

Last updated: 14 June 2014

Red cheeks
by Mo (Jun 14)

Hi Chris
Thank you for getting back to me, and an update on my cheeks they got very red, hot and burning, am now off of Nilotanib for four days to see if this is the reason ,if so they will reduce

by cdw5000 (Jun 12)

Mo,
I sometimes have burning cheeks - ensure you drink lots of water; at least 1-2 litres a day. I've found most side effects I get with nilotinib are cyclical in that they will come and go and over

by Mo (Jun 12)

I switched to Nilotanib on 5th June , by Sunday I had glowing red cheeks by Tuesday they were burning no itching just hot, also realy tired, been in touch with HH waiting for them to get back, is
Category: Uncategorised

Replies: 2

Last updated: 14 June 2014
HAYLEY88 on 11 June 2014

Category: Uncategorised

Replies: 3

Last updated: 12 June 2014

Immunisations
by nigel (Jun 12)

Hi Tony, I visited last year and had all the recommended jabs ( no live ) no issues, On Imatinib, enjoy, wonderful place. Nigel

by wkeeping (Jun 12)

Hi Tony,
I agree with Richard. There are non-live versions of all the vaccines required for Thailand, so you should have no concerns about getting all relevant inoculations. Note that I added Hep B

by Richard42 (Jun 12)

Hi Tony
It is my understanding that the concern about live vaccines relates to your immune status, not treatment for CML. So, if your treatment is going well and your blood counts normal, I don't

by HAYLEY88 (Jun 11)

I am travelling to Thailand in July but a little worried as to whether I should have any vaccinations. I understand that I should not have any live vaccines but trying to weigh up the pros and cons
Category: Uncategorised

Replies: 3

Last updated: 12 June 2014
sandy craine on 9 June 2014

Category: Uncategorised

Replies: 9

Last updated: 11 June 2014

TKI's and pregnancy- new thread
by sblan (Jun 11)

I had a brief moment to look at sandys blog and plan on reading more soon. Thanks for the info.
Sasha

by karen (Jun 11)

Hi Sasha
It may be worth you taking a look at the 'Blogs and Journals' link on the website as Sandy's story is on there and would give you some background.
Good luck with everything
K

by sblan (Jun 11)

Thank you for getting back to me with the Hammersmith information, I am excited to check it out. I also emailed one of the professors in hopes of getting some additional advise.

by sblan (Jun 11)

Thank you again for the information.
Category: Uncategorised

Replies: 9

Last updated: 11 June 2014
Mo on 8 June 2014

Category: Uncategorised

Replies: 1

Last updated: 10 June 2014

Tiredness
by sandy craine (Jun 10)

Hi Mo,

consider using magnesium oil (the new one is called 'ultra' and doesn't sting). So many of us are deficient in this important mineral, a deficiency that can cause many problems,

by Mo (Jun 8)

Hi
Have been put on 150mg capsules of nilotanib two twice a day. Started on Thursday but am so tired,
Anyone else had this problem ? I never felt this way on Imatanib,
Am concerned so any feed
Category: Uncategorised

Replies: 1

Last updated: 10 June 2014
rsgiles on 7 June 2014

Category: Uncategorised

Replies: 1

Last updated: 7 June 2014

New CML news
by Steven Davies (Jun 7)

As far as I know it's still in trial in Italy. Not heard anything lately

by rsgiles (Jun 7)

Has anyone heard any news about the new vaccines that are out?
Category: Uncategorised

Replies: 1

Last updated: 7 June 2014