You are here

Forum

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
Mo on 30 May 2014

Category: Uncategorised

Replies: 2

Last updated: 30 May 2014

PCR
by Mo (May 30)

No not PCRU all this time , I was when on 600, but even on 400 alway's had good results , just wish I had said no to the 300. Will have to wait until Monday to see what is suggested.
Mo

by Thomaskk (May 30)

Thanks to new generation TKIs. No need need worry about any immediate danger. Have you been PCRU all these years ?

by Mo (May 30)

I have been on Glivec for 13yrs and have done very well with no side affects, back in March 2013 my Dr reduced me from 400 down to 300 , I was not happy with this but went along with the decision,
Category: Uncategorised

Replies: 2

Last updated: 30 May 2014
rsgiles on 29 May 2014

Category: Uncategorised

Replies: 8

Last updated: 1 June 2014

pcr test results changed
by rsgiles (Jun 1)

Thanks i needed that I its hard to get back to my regularly happy self and I dont even feel like eating sometimes.

by Thomaskk (Jun 1)

According to my onc you have crossed the bridge. ( he belives that if you can cross the 10 year mark resonsblely well, your cml is history provided you take the tki for maintenance. )
Relax. You

by rsgiles (May 30)

Once again thank you, everyone tells me not to worry and I am really trying to.

by karen (May 30)

I think everyone worries about their results and any changes in them - i should imagine that doesn't change however long you have been diagnosed. Your consultant doesn't seem too worried and
Category: Uncategorised

Replies: 8

Last updated: 1 June 2014
sandy craine on 23 May 2014

Category: Uncategorised

Replies: 1

Last updated: 24 May 2014

Memorial: Professor John Goldman
by karen (May 24)

It sounds like an amazing day to celebrate the life of an amazing man. We will all be thinking of him today.

Karen

by sandy craine (May 23)

CML patient advocates as well as patients will attend tomorrow's memorial for Prof. Goldman at the Wolfson Theatre, Royal College of Physicians, Regents Park, London. Many of you will know how
Category: Uncategorised

Replies: 1

Last updated: 24 May 2014
Lucas on 21 May 2014

Category: Uncategorised

Replies: 3

Last updated: 22 May 2014

New Milestones and anxiety
by Lucas (May 22)

Thanks for your reply - sandy and chris
It was just my anxiety. I'm doing good. i feel good. I heard about the diference between recomendations and guidelines. I think it's to early to chance tki

by sandy craine (May 22)

Hi Lucas, Chris has said it all really. The only thing I would add is this... you need to put the NCCN guidelines and the ELNet recommendations into context. They are an 'overall picture' of how to

by cdw5000 (May 21)

Hello Lucas,
The medical opinion is deeper, earlier is better; however there are many people who don't meet the milestones who live quite normal lives. At 3.5 years in I still bounce in and out of

by Lucas (May 21)

I had some free time this afternoon and i watched the CML Horizons 2014 videos. In one of them, a professor said that they now want the patients to achieve the milestones earlier than before (CCR by
Category: Uncategorised

Replies: 3

Last updated: 22 May 2014
johnmakus on 15 May 2014

Category: Uncategorised

Replies: 2

Last updated: 16 May 2014

New to CML
by johnmakus (May 16)

Thank you for the info. It has been hopeful.

by sandy craine (May 16)

I am so sorry that your child has been diagnosed with CML- and at such a young age. Over the years there have been quite a few young people and children who's parents or carers have posted on this

by johnmakus (May 15)

Hi everyone.
This seems to be the best site to find information as well as discuss with other people that are living with CML.

My son was diagnosed about 1 month ago with CML. He is 2.5 years
Category: Uncategorised

Replies: 2

Last updated: 16 May 2014
David Fitz on 13 May 2014

Category: Uncategorised

Replies: 6

Last updated: 17 May 2014

Just when I thought I understood PCRs!
by sandy craine (May 17)

The problem is that at diagnosis it is very likely that every cell in the sample will be positive. At this stage q-PCR testing is unreliable, apart from as a qualitative(rather than quantitative)

by Lucas (May 15)

Congrats for the good result, david!! I got confused with my results too! i saw 25% ratio first and thought it was bad, then i looke ate "international scale convertion" and it was 14.4%. When you

by karen (May 15)

Six years in and i still feel that i struggle to understand all the types of results and the fact that you have to be able to adjust them for the International Scale. Still fantastic results for you

by sandy craine (May 15)

Hi David, not just you- I asked my doctor about how it was possible to be more than 100% positive at diagnosis and she explained it like this:
"With respect to the 300% this is not uncommon. The
Category: Uncategorised

Replies: 6

Last updated: 17 May 2014
Thomaskk on 8 May 2014

Category: Uncategorised

Replies: 3

Last updated: 8 May 2014

They say "it is cured" ..see who ?
by Basil from RSA (May 8)

I concur with your statement and conclusion Sandy. TFR can never be seen as a "cure", but merely the Bodies Immune system being able to suppress the effect of the Philadelphia Syndrome. After all

by sandy craine (May 8)

Well there has been a lot of reaction to this on various F/book pages and I can see why people would be upset. I think though that the word 'cure' (and we have had this discussion before) is being

by Lucas (May 8)

well, if we think in that way, diabetes is "cured" too heheh

by Thomaskk (May 8)

Enjoy :)

https://onedown.org/?utm_source=kci_homepage_banner&utm_medium=referral&...
Thomas
Category: Uncategorised

Replies: 3

Last updated: 8 May 2014
Barryphilipallsop on 25 July 2014

Category: Uncategorised

Replies: 2

Last updated: 27 July 2014

DESTINY TRIAL 3Month Results
by Barryphilipallsop (Jul 27)

Hi Sandy
I have not had side effects for many years - not after the first three months on Glivec.

I notice no difference on the reduced 200mg dose.

Many thanks for your ongoing guidance

by sandy craine (Jul 25)

Hi Barry,

thanks for taking time to update us all on your experience so far of the DESTINY study. I do hope you continue to hold your current MMR as you have obviously had 3 stable results- at

by Barryphilipallsop (Jul 25)

I have not posted here for a very long time but thought it would be useful to share my results on the DESTINY trial.

I am one of the very few, six I think, patients involved at Hammersmith.
Category: Uncategorised

Replies: 2

Last updated: 27 July 2014
Lucas on 5 May 2014

Category: Uncategorised

Replies: 4

Last updated: 6 May 2014

sub-optimal, but good
by Lucas (May 6)

Hi everyone,
I went to an appointment today. it was ok. my doctor wasn't so impressed with my PCR, but wasn't too disappointed too. She told me that heard about few cases of lost of reponse with

by RodM (May 6)

Hi
You just can't tell what's going to happen - I had a fast drop below 10% in 3 months, but after 12 months I got to 0.2% and stayed right there for nearly a year (worryingly above MMR) until the

by sandy craine (May 6)

Hi Lucas,

congratulations, a good result for you... even if it is not what you hoped for it is pretty much very near the 3m 10% IS mark. The next 'goal' is CCyR (1.5% - 0%) at 6 months.

by David Fitz (May 5)

Hey Lucas,
That's not a bad result at all. There's a lot of talk about a marker of 10% at 3 months, but it's more individual than that really. If it's any help, I started off with a 321% PCR and
Category: Uncategorised

Replies: 4

Last updated: 6 May 2014
Thomaskk on 5 May 2014

Category: Uncategorised

Replies: 2

Last updated: 6 May 2014

PCRU after 13 years
by sandy craine (May 6)

It's always reassuring to hear such news. Thanks for sharing it.

Congratulations to your friend.
Sandy

by Lucas (May 5)

great! I'm glad to hear good news :)

by Thomaskk (May 5)

Hi
I just want to share a good news. A cml buddy of mine has achieved PCRU today after 13 gleevec years. Party to begin shortly. .....
Thomas
Category: Uncategorised

Replies: 2

Last updated: 6 May 2014
Wellfi on 7 July 2014

Category: Uncategorised

Replies: 23

Last updated: 10 July 2014

Husband diagnosed....terrified
by Dennis (Jul 10)

I was diagnosed at the age of 45, and have now reached 65. I'm as well today as I was just before diagnosis.

Things have changed dramatically since the advent of Glivec and hopefully you'll

by Wellfi (Jul 9)

Thanks everyone for your replies. Have taken some time to read through some CML blogs and am feeling more positive. Sounds like life goes on as long as the medication is working.
It has just broken

by RodM (Jul 9)

Hi
I can only echo what everyone else has said on this forum, but in my opinion, if I was forced somehow to pick one cancer to have out of all the different forms of it, this is the one I'd pick -

by cmlblogger (Jul 9)

On the subject of Private vs NHS - I too am covered by a very generous company private policy, but I decided to go with the NHS as was referred to the Hammersmith where I think a lot of the
Category: Uncategorised

Replies: 23

Last updated: 10 July 2014
Jcab on 4 July 2014

Category: Uncategorised

Replies: 15

Last updated: 11 August 2014

Fathering a child on Imatinib
by Jcab (Aug 11)

Hi all, I just wanted to say thanks again for all the information sent over. We finally saw our GP this morning, and shes writing a letter to Prof Apperley to request a referral. Fingers crossed

by sandy craine (Jul 24)

Hi David... I suffer from these too. You might find the following article interesting- I have not yet had time to read but it might have some useful info. Mine do improve when I consistently use an

by David Fitz (Jul 24)

Yeah, I have loads of floaters too. I try to count them, but as soon as you start to they move so it makes it impossible!! I reckon it's around the 15-20 mark. It's worst in the summer as they show

by Jcab (Jul 23)

His sight is ok. All of the haemorrhages repaired leaving no lasting damage. I'd say the big thing is the anxiety it brought with his eyes. He has floaters (which most people do even me) and he now
Category: Uncategorised

Replies: 15

Last updated: 11 August 2014
shafagh12 on 30 June 2014

Category: Uncategorised

Replies: 3

Last updated: 1 July 2014

PCR results after 1 year
by sandy craine (Jul 1)

You should be celebrating your mothers 2 PCR results. The first - 6 months ago- (so only 4 months after she started therapy) is an optimal results to say the least! 0.002% on the IS means her level

by chrissie (Jun 30)

Hi Shafagh
A wonderful result for your mother again. She has reacted very well to imatinib to achieve such good results so quickly and to hold it. The extra .00099 don't mean anything as far as I

by David Fitz (Jun 30)

Hi,
That's an awesome result!
Major Molecular Response, MMR or MR3, is usually considered the "safe haven" level, when it comes to PCR tests. MMR is 0.1%. Once a patient is below (and maintains

by shafagh12 (Jun 30)

Hi everybody.

My mother was diagnosed with CML about 10 months Ago and she is on imatinib 400 and today we got her PCR examination results and it was 0.00299 but the previous one (about 6
Category: Uncategorised

Replies: 3

Last updated: 1 July 2014
tartancaddy on 30 June 2014

Category: Uncategorised

Replies: 1

Last updated: 1 July 2014

Hypokalemia
by sandy craine (Jul 1)

Hi Gary,
Hypomagnesemia can cause hypokalemia. Magnesium is required for adequate processing of potassium. It is hard to assess whether you are deficient in magnesium as only about 1% is in the

by tartancaddy (Jun 30)

Hi Guys
Anyone else have experience of borderline levels of potassium in their blood? Just had a blood test and this has been noticed. Just had a quick google to see what it means and Hypokalemia
Category: Uncategorised

Replies: 1

Last updated: 1 July 2014
sandy craine on 29 April 2014

Category: Uncategorised

Replies: 18

Last updated: 16 July 2014

Updates on DESTINY trial- Thomas
by sandy craine (Jul 16)

Hi David,
It's great that your side effects have 'pretty much disappeared' on the reduced dose of imatinib. My fingers are crossed too in the hope that the next PCR shows that your BCR-ABL1

by david_a (Jul 15)

Hi all, 2 weeks in and my side effects have pretty much disappeared on half dose of glivec. I feel much better mentally, more alert, no brain fog. No fatigue. I thought my side effects were pretty

by sandy craine (Jul 3)

Wishing you the best of luck- hopefully you will maintain you MR on the reduced dose without problems. Thanks for sharing your experience here, I look forward to hearing how you get on.
Sandy

by david_a (Jul 2)

Hi all, this is day 1 for me on the DESTINY trial. My dose of glivec has reduced from 400mg to 200mg. I'll keep you all updated on progress and side effect reductions.
Category: Uncategorised

Replies: 18

Last updated: 16 July 2014