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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
rsgiles on 7 June 2014

Category: Uncategorised

Replies: 2

Last updated: 10 June 2014

side effects
by sandy craine (Jun 10)

Please see my post to Mo regarding magnesium deficiency. It is not possible to tell if you are deficient from a blood test so you would have to give the oil or lotion a trial to see if it helps with

by Lydia (Jun 8)

The general opinion seems to be that whatever side effects you get when you first start taking Glivec get better with time. In our experience, you can get new ones. After being on Glivec for many

by rsgiles (Jun 7)

Is it possible that you could get new side effects you've never had before even after many years on gleevec? I've had a slight headache like in the back and top of my head and my legs hurt like you
Category: Uncategorised

Replies: 2

Last updated: 10 June 2014
Steven Davies on 3 June 2014

Category: Uncategorised

Replies: 1

Last updated: 4 June 2014

Soya milk.
by sandy craine (Jun 4)

Hi Steven,
I think there is some research that points to uncultured soy being of no nutritional benefit (or even worse). I have read that it is not good to include soy if you have thyroid problems

by Steven Davies (Jun 3)

Can anybody help with this question.

Soya milk. Is it ok to take soya milk. Is there any indication about drinking soya milk and cancer.

Thanks.
Category: Uncategorised

Replies: 1

Last updated: 4 June 2014
sandy craine on 4 June 2014

Category: Uncategorised

Replies: 3

Last updated: 5 June 2014

Francis- 'French Guy'- feeling desparate
by Frenchguy (Jun 5)

Thank you Sandy for these precious informations. To be more precise in my illness and as I forgot to say I am ph masked but with the bcr abl fusion, and I saw in some old articles in the net that

by sandy craine (Jun 5)

Hi Francis,

Yes you are right... many people do not adhere strictly to therapy. It has been shown that between 20-40% of CML patients miss some doses on a regular basis. This can be the basis

by Frenchguy (Jun 4)

Thanks again Sandy for your support.

Today, my onc told me that I was in hematologic response.

I was happy to see that tasigna is a good drug for me. I haven't done

by sandy craine (Jun 4)

Hello; yesterday I had to go

new

Submitted by Frenchguy on Tue, 03/06/2014 - 18:04.

Hello; yesterday I had to go to hospital because of quite big pain on my thorax. They haven't
Category: Uncategorised

Replies: 3

Last updated: 5 June 2014
Mo on 3 June 2014

Category: Uncategorised

Replies: 11

Last updated: 9 June 2014

Nilotanib
by Mo (Jun 9)

Hi Lydia,
The reason I was taken off of Glivec amd put onto Nilotanib was due to mutations it can just happens I was told ,they don't know why after so many yrs being on Glivec ,now been on

by Lydia (Jun 8)

Mo, so sorry to hear this.
I do hope things go well for you with the swap to Nilotinib.
After 11 years on Glivec that must have been a huge shock. Especially if you've free of the side effects

by Steven Davies (Jun 8)

When I was taking the tablets twice a day I was taking them at 6 am and 6pm. So fasting during the night and the I could have breakfast after 7 and likewise I would fast from 4 pm and couls eat

by Smahmood (Jun 8)

Hi Sandy,
Apologies for the late reply and thank you very much for the information.
I think I do not want to reduce the dose just yet; I will wait for a bit more before I take any decision.
Shahid
Category: Uncategorised

Replies: 11

Last updated: 9 June 2014
Thomaskk on 3 June 2014

Category: Uncategorised

Replies: 4

Last updated: 5 June 2014

My Six month PCR . thank you all
by sandy craine (Jun 5)

Hi Thomas,

well yes at least MR4.5- as this is equal to 0.032% (IS) but your result is 0.002% so is virtually at MR5/0.001% (IS). By anyone's calculation this is a good result at 6 months.

by Thomaskk (Jun 5)

Hi Sandy
Thank you for kind words. Are you saying that I have reached 4.5 log now (.002 %) ? I am happy even with an MMR :)

by Sarah Bo (Jun 3)

That is a great result, celebrate!!
Sarah :)

by sandy craine (Jun 3)

Hi Thomas.... wow, well done. You can dance and dance on in celebration.
0.1% is MMR according to the international standard (IS)- so you are well below that-
MR4
Category: Uncategorised

Replies: 4

Last updated: 5 June 2014