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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
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