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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
nigel on 6 January 2017

Category: Uncategorised

Replies: 14

Last updated: 18 March 2017

Generic Imatinib now being issued in the UK
by David Fitz (Mar 18)

Hi Nigel,
Digging up an oldish topic here, but in clinic the other day my doctor and I got talking on the topic of generic imatinib. At Barts they are still prescribing branded Glivec because of the

by David Ryner (Jan 25)

Just a brief word on pricing for generic imatinib to add to that already set out in the previous posts. I'm not an expert on what's called the 'dark art' of pricing but what follows

by ruddoug09 (Jan 23)

I've just received my first delivery of the new Imatinib, made by Sandoz. I'm in North East England but get my deliveries from Alcura.

The tablets look almost the same as the

by Olivia (Jan 22)

Thanks Sandy. I see from earlier in this thread that Sandos is part of Novartis, so I assume it's good news and there won't be much if any difference? Apart from price, that is.
Category: Uncategorised

Replies: 14

Last updated: 18 March 2017
MartinZA on 12 December 2016

Category: Treating CML

Replies: 9

Last updated: 16 March 2017

How important is MMR?
by David Fitz (Mar 16)

Hi Karen,
At CML Horizons last year, two doctors (Steve O'Brien and Giovanni Rosti) both spoke about 1% being a good rule of thumb as a "safe" spot. For example, if they had a patient

by karen (Mar 16)

Hi Martin
If it's any help there is a lot of thinking that anything below 0.5 is 'safe', certainly David Marin has suggested that is the better figure to be more concerned about.
I have

by MartinZA (Mar 16)

Hi David
Thank you so much for the reassurance! I am sure that I will get lower, but I fear I will never truly relax until I reach that 0.1%, which seems so arbitrary yet is so very important

by David Fitz (Mar 13)

Hi Martin,
I understand you're disappointed, but the reduction from 0.36 to 0.24 is a 33% drop. You've wiped a full third off your previous result. Not to be sniffed at!
David.
Category: Treating CML

Replies: 9

Last updated: 16 March 2017
chrissie on 10 March 2017

Category: Side effects

Replies: 4

Last updated: 14 March 2017

Bone density
by chrissie (Mar 14)

Thanks, Sandy. I shall definitely look into this.
Best Chrissie

by sandy craine (Mar 11)

Hi Chrissie... sorry to hear you are having ongoing problems since you broke your arm. Not sure how to respond other than to suggest you take a look at natural progesterone cream and the link

by chrissie (Mar 11)

Thank you, Olivia. I think that as well as sex education in schools, they should teach kids what getting old is like so they, at least, are prepared!!
Best
Chrissie

by Olivia (Mar 11)

Hi Chrissie
I haven't had any breakages - I just wanted to say that I'm sorry you have had all this to cope with. I'm sure you will let us all know how you get on.
Best
Olivia
Category: Side effects

Replies: 4

Last updated: 14 March 2017
sprycml on 27 February 2017

Category: Side effects

Replies: 7

Last updated: 11 March 2017

Itching in ... sensitive places?
by sprycml (Mar 11)

Thanks everyone! Glad to know I'm not the only one. Will definitely be trying some of these remedies.

by davewell (Mar 10)

Sprycml, I had exactly the same problem, same exact areas. I am on 140mg Sprycel.
For, ahem, the front:
One thing that helped me a lot was using 100% cotton underwear; I believe because

by sandy craine (Mar 9)

Hi Adolfo,
I am not surprised that the cream you used has helped with the itching you have experienced as a side effect of taking nilotinib as it is a (synthetic adrenocorticosteroid for

by Adolfo (Mar 6)

I had these problems on my anus. I was getting crazy. I used several products recommended by doctors and nothing worked. One day, after taking a shower, I decided to use a cream that I use for the
Category: Side effects

Replies: 7

Last updated: 11 March 2017
Tasha on 10 March 2017

Category: About CML

Replies: 8

Last updated: 10 March 2017

Enlarged spleen from CML
by davewell (Mar 10)

On my hospital hematology area, monday is CML day; most people come in as a father/mother son/daughter couple, and usually the elderly is the patient. With me and dad, it's the opposite.

by Tasha (Mar 10)

I am 29 and also in the same phase as you were when diagnosed. The sprycel seems to be working so far. When they put my dose back up to 140mg I will have to figure out how to cope with the side

by Tasha (Mar 10)

I am 29 and also in the same phase as you were when diagnosed. The sprycel seems to be working so far. When they put my dose back up to 140mg I will have to figure out how to cope with the side

by davewell (Mar 10)

I actually am at 140mg Sprycell, because CML was diagnosed in the accelerated phase, on April 2016.
I believe it was borderline chronic/accelerated, but of course doctors tend to err on the
Category: About CML

Replies: 8

Last updated: 10 March 2017
EvaH on 11 December 2016

Category: About CML

Replies: 9

Last updated: 10 March 2017

Hello Everyone
by David Fitz (Mar 10)

Hi Eva,
ALT is an enzyme made in the liver, also called SGPT. Elevated levels may be a sign of liver toxicity (hepatotoxicity).
You'll notice that in posts on this forum some words are in blue

by EvaH (Mar 9)

Thanks for that. What does ALT mean?

Sorry to hear about your other troubles. I read that Imantib can make you more sensitive to sun, dont know if the same is true of Tasigna but if so it

by cmljax (Feb 19)

I quit drinking long before CML Dx (9-2016) and I wouldn't get anywhere near it while I'm on Tasigna. I was MMR in 83 days and I attribute that to very good fortune, strict adherence to

by EvaH (Jan 12)

I've been using TasiTrack which was designed for Tasigna

Thanks, I decided to slip the schedule as I was in Asia for a month. Then I had a retinal hemohrage and the doc said to
Category: About CML

Replies: 9

Last updated: 10 March 2017
sg3 on 21 February 2017

Category: Uncategorised

Replies: 3

Last updated: 4 March 2017

Travel holiday insurance
by fehr (Mar 4)

I have an HSBC Gold MasterCard which includes annual multi-trip travel insurance (I think Aviva) including skiing at a charge of £150 per year. No need to use the card for

by Helenabrown (Feb 21)

World First ,my husband has cml ,on nilotinib dx 18mths ago, not quite at mmr yet. We have full cover year worldwide for good price

by Dennis (Feb 21)

Hi, there is a post further down this page about travel insurance without screening.

by sg3 (Feb 21)

Hi does anyone have any insurance company recommendations for a winter sports holiday flying from the uk to europe for a week.

Gleevec started may 2016 changing to tasagnia jan 2017 .2nd stage
Category: Uncategorised

Replies: 3

Last updated: 4 March 2017
sandy craine on 22 January 2017

Category: Uncategorised

Replies: 5

Last updated: 2 March 2017

Good news - NHS England have reversed their initial refusal to fund second transplants
by johnw1001 (Mar 2)

Hi Sandy,
Just had a mail from Change.org expanding on the news that NHS England have reversed their decision re. second transplants.Apparently 167,000 people signed the petition and donations were

by Richard42 (Feb 27)

Really good news.

by David Ryner (Feb 27)

NHS England have just put up a media release on their website announcing they have reversed their decision to withdraw funding for second allogeneic stem cell transplants. There were some news

by chrissie (Jan 25)

Much better new for Sasha. Just had an email from Change and the hospital are booking her in for a BMT in 4 weeks. She is still around £40k short of the £130k but whether she will need
Category: Uncategorised

Replies: 5

Last updated: 2 March 2017
jilu on 21 November 2016

Category: Blood tests

Replies: 5

Last updated: 2 March 2017

understanding BCR-ABL levels
by jilu (Mar 2)

HI Sandy,
Thanks for your quick response .

I started dasatinib 3 months back , is exactly when I had my PCR test . I am doing PCR tests every 3 months.
Regards,

Jilu

by sandy craine (Mar 1)

Hi Jilu,
Well you have obviously responded to dasatinib as your Bcr/Abl level has reduced considerably. If this result is from a sample given 1 month ago (2 months from starting dasatinib?)

by jilu (Feb 27)

Hi all,
Here is my latest bcr-abl results . Initially I was on imatinib 400mg but changed to dasatinib 100mg daily 3 months back due to severe bone and muscle pain. Latest bcr-abl shows 4.9781% on

by EvaH (Dec 11)

This primer is JUST was I was looking for, thanks Sandy!
Category: Blood tests

Replies: 5

Last updated: 2 March 2017
carolinephilips76 on 27 February 2017

Category: Treating CML

Replies: 1

Last updated: 27 February 2017

DIGNOSIS OF CML
by David Fitz (Feb 27)

Hi Caroline,
Without getting too technical, the PCR test was likely performed on your brothers blood, whereas the biopsy would have been on bone marrow.
These days blood tests are very

by carolinephilips76 (Feb 27)

my brother has been dignosed cml 18 days ago on the basis of PCR test. onward bone merrow aspiration and biopsy done .what is difference between PCR TEST AND BIOPSY.
Category: Treating CML

Replies: 1

Last updated: 27 February 2017
Richard42 on 27 February 2017

Category: Uncategorised

Replies: 0

Last updated: 27 February 2017

Brighton Marathon for Hammersmith
by Richard42 (Feb 27)

https://www.justgiving.com/fundraising/Richard-Willoughby
Hi all
A little while ago Sandy posted about the new Blood Fund at the Hammersmith Hospital, supporting the haematology department that
Category: Uncategorised

Replies: 0

Last updated: 27 February 2017
chrissie on 25 February 2017

Category: Uncategorised

Replies: 0

Last updated: 25 February 2017

2nd transplants
by chrissie (Feb 25)

Good to hear that at last the NHS has agreed to fund 2nd transplants. Sad for those for whom this decision has sadly come too late.
Best to all
Chrissie
Category: Uncategorised

Replies: 0

Last updated: 25 February 2017
cmljax on 23 February 2017

Category: Uncategorised

Replies: 3

Last updated: 24 February 2017

Direct communication with Members
by David Fitz (Feb 24)

Hi there,
Yes - this should be pretty easy, though it's a little hidden. We are going to try to work on improving this in the future when we make updates to the site.
To send a direct message to

by cmljax (Feb 23)

Thanks Sandy. Actually I was hoping to ask you to look at and comment on my post Skin Cancer 7 and counting. I want to know if you have heard of this type of outbreak associated with CML

by sandy craine (Feb 23)

Hi,
at the moment this is not possible but we will be working on this as a extra in the near future. If you wish to PM a particular member of this forum ... and they agree.... we can put you in

by cmljax (Feb 23)

I am new to this site and just wanted to know if there is a personal messenger capability that allows members to communicate directly with one another?? Thanks
Category: Uncategorised

Replies: 3

Last updated: 24 February 2017
Lucas on 18 February 2017

Category: Treating CML

Replies: 3

Last updated: 23 February 2017

some - good - news and reassurance
by sandy craine (Feb 23)

HI Lucas,
thanks for your positively uplifting post.... so glad you continue to have such a low PCR result -
my best wishes as always,
Sandy

by Lucas (Feb 20)

Hey, Martin!! Thanks for the kind words. I know that most of us wait for that big fat 0.1% to live life, but it doesn't have to be like that. Life is happens all the time. If you're feeling

by MartinZA (Feb 20)

Hi there Lucas

Muito obrigado for your excellent post and your reassuring advice. It's such good news that your PCR is now so low - I read all your posts about your problems with

by Lucas (Feb 18)

Hey, guys, hope everyone's fine.

I don't post here for a long time but i'm always reading the threads. This is a great group and i'm so greatful to have found cml support when
Category: Treating CML

Replies: 3

Last updated: 23 February 2017
DJ on 11 February 2017

Category: Side effects

Replies: 3

Last updated: 20 February 2017

What will happen if mom takes Tasigna 9 hours apart instead of 12?
by DJ (Feb 20)

Thanks you guys. She took it once and it about knocked her out - she's very sensitive to it - so she decided to go back to taking it before bed because it's so strong for her it's

by sandy craine (Feb 16)

Hi,
You should advise your mother that if she eats a meal within 1 hour of taking her nilotinib the she is risking an increase in the levels of nilotinib in her blood and therefore an increase in

by Ben K (Feb 13)

Hi,
I can't tell from your post if your mum wants to take her Tasigna always 9 hours apart or if she is just trying to adjust her dose times.
I recently travelled overseas and needed to adjust

by DJ (Feb 11)

She's trying to adjust her eating schedule in the evening. She is in remission now. She just took one (it's right before dinnertime) but says she is feeling dizzy.
Category: Side effects

Replies: 3

Last updated: 20 February 2017
David Ryner on 13 February 2017

Category: Treating CML

Replies: 1

Last updated: 20 February 2017

Update on the NICE evaluation of ponatinib
by David Ryner (Feb 20)

Following the publication of the NICE Appraisal Consultation Document (ACD) NHS England (NHSE) have now updated the National Cancer Drugs Fund (CDF) List to include ponatinib treatment for both

by David Ryner (Feb 13)

NICE have today published their Appraisal Consultation Document (ACD) on the evaluation of ponatinib. ACD publication is a significant milestone event in the evaluation process. The provisional
Category: Treating CML

Replies: 1

Last updated: 20 February 2017
SamLG on 18 February 2017

Category: Uncategorised

Replies: 2

Last updated: 18 February 2017

New to the forum, newly diagnosed and wanted to say hi
by SamLG (Feb 18)

Thanks Lucas :) Great to hear you're well, its so nice to see so many positive people on here, and thank you for the heads up on the meeting, i'll drop them a line

by Lucas (Feb 18)

Hi, sam. hope you're fine. My name is Lucas and i'm 35 - so, about your age. i was diagnosed almost 3 and a half years ago and i'm doing great. I know that there are some meet up in

by SamLG (Feb 18)

Hi all,
I'm a 34 year old female who was diagnosed three weeks ago following a routine blood test as I was having problems conceiving a child. So far I’ve been on imatinib for a few weeks
Category: Uncategorised

Replies: 2

Last updated: 18 February 2017