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Lucas on 17 August 2015

Category: Treating CML

Replies: 9

Last updated: 26 August 2015

just want to share good news
by wshi2001 (Aug 26)

Lucas,I am so happy for you as you finally found the best medication for your problem. This is already MMR4.5. Inspiring news for everyone.

William

by Lucas (Aug 21)

thanks, david! yes! i'm in MMR4!! still can't believe in it!! hope you're doing great!

by Lucas (Aug 21)

thank you so much, sandy. i had 2 pcrs in a 15 day gap (2 different labs) just to see how good i was and to find out what was the sensibility of my local lab). in my local lab i was pcru and in the

by sandy craine (Aug 21)

Dear Lucas,
so good to hear you're doing so well on nilotinib/Tasigna..... great per result and the bonus is that your Q of L is good. After a shaky start with imatinib you must be so relieved to
Category: Treating CML

Replies: 9

Last updated: 26 August 2015
Moirah on 16 August 2015

Category: Side effects

Replies: 3

Last updated: 22 August 2015

Left side tummy, back pain spleen/kidney?
by David Fitz (Aug 22)

Just to reassure you, in the early days of treatment your body is probably breaking down a lot of the disease with the help of your medication. That means there's a lot of 'waste' to get rid of,

by Moirah (Aug 18)

Thank you Lucas x

by Lucas (Aug 17)

probably your spleen getting to the normal size. try not to worry much, it happens a lot. :)

by Moirah (Aug 16)

Hi Please can I ask I've been on imatinib now coming up to 1 month and yesterday I've started to feel some pain in my left side front & back but more back, I'm thinking spleen or
Category: Side effects

Replies: 3

Last updated: 22 August 2015
Moirah on 13 August 2015

Category: Getting help

Replies: 6

Last updated: 15 August 2015

Newly DX Liverpool
by nigel (Aug 15)

Hi just wanted to add a hello, as others have said the out look is excellent for us. I am diagnosed 4 years next month and they fly by. Work full time, play sport and live normal life. Takes a

by darley (Aug 14)

You will still be going through an emotional roller coaster. But indulge yourself. Get it over and done with and then take deep breaths and consider that as you were diagnosed merely through a

by Moirah (Aug 14)

Thank you Chris x

by cdw5000 (Aug 13)

Hi,
It's early days so far and every slight change or unusual occurrence will set your mind into a state of mild panic. Over time this will settle down - as you have more blood tests you should
Category: Getting help

Replies: 6

Last updated: 15 August 2015
chrissie on 7 August 2015

Category: Getting help

Replies: 3

Last updated: 10 August 2015

DESTINY - happy me
by sandy craine (Aug 10)

Hi Chrissie... that is good news and underlines that it is for a good reason that they (labs) always retest with a different blood sample. Grapefruit aside, you must be feeling pretty wonderful!

by chrissie (Aug 9)

... and I love grapefruit!

by darley (Aug 9)

You're obviously just "an odd one" ;)
I wonder if something is affecting your dose? You're not eating 5 grapefruits and a load of marmalade every day are you :)

by chrissie (Aug 7)

Hi All Just had a call from my local Exeter hospital who had been called by HH regarding my re-test after I appeared to have had a relapse. Apparently I'm back down to 0.055 PCR (IS) to my great
Category: Getting help

Replies: 3

Last updated: 10 August 2015
wshi2001 on 1 August 2015

Category: Treating CML

Replies: 5

Last updated: 4 August 2015

Would Imatinib work again for me?
by David Fitz (Aug 4)

Hi William,
I am not 100% sure on the time it takes for dasatinib to completely wash out of your system, but when I dropped imatinib my consultant and I calculated the half lives of the drug, and

by wshi2001 (Aug 4)

Thanks Sandy, your support means a lot to me. My heart pounding problem has improved a lot, I would say 70% of symptom went within 2 days, and I can finally sleep well at night. I will make an

by sandy craine (Aug 2)

Hi William,
sorry to read of your experience.... especially as you were responding well to imatinib... as David has said in his post - ELNet recommendations are for 12 months not 6, and even then a

by wshi2001 (Aug 2)

Thanks David, I guess symptons and side effects varies from one to the other. Heart pumping is the main reason for me to switch back to Imatinib. And with Imatinib, I don't really have too much of
Category: Treating CML

Replies: 5

Last updated: 4 August 2015
Kerrie on 31 July 2015

Category: Blood tests

Replies: 2

Last updated: 1 August 2015

New to Forum
by David Fitz (Aug 1)

Hi Kerrie,
Those are good numbers for him, at this stage. It took me over 2 years to get to anything below 0.05%, and I'm doing very well now.
Leukaemia Net suggests that anything above 0.1% after a

by cdw5000 (Jul 31)

Hi Kerrie,
Welcome to the forum. I'm sorry to hear your husband was diagnosed with CML, but I'm really pleased to see he had a fantastic response to the Tasigna. He has easily achieved a Major

by Kerrie (Jul 31)

Hi - my hubbie was diagnosed in Feb 2015 in the Chronic stage - he is current on Nilotinib (Tasigna) Got the results today for his BCR-ABL test - its at 0.046% - consultant is happy :-) Is there
Category: Blood tests

Replies: 2

Last updated: 1 August 2015
Richard on 24 July 2015

Category: Other conditions

Replies: 2

Last updated: 26 July 2015

Wish me luck!
by chrissie (Jul 26)

Wishing you lots of good luck for your forthcoming op. It sounds as if you've been through the mill so I wish you plain sailing ( as far as is possible) from now on. Will be thinking of you on Sat

by Olivia (Jul 25)

I hope the operation eventually goes ahead, that all goes smoothly for you, and that your pain is relieved. It sounds as though you have had a very difficult time getting this far.

Good luck

by Richard (Jul 24)

I am due to go into hospital on 1st August for a discectomy and two decompressions on my spine. After two years of leg pains, then bilateral sciatica, then numbness and cramps, the hospital decided
Category: Other conditions

Replies: 2

Last updated: 26 July 2015
Gst on 23 July 2015

Category: Treating CML

Replies: 13

Last updated: 8 August 2015

Delaying a SCT
by darley (Aug 8)

I hope everything goes as well as possible.

by sandy craine (Aug 4)

Hi G,

I am glad you are planning a reduced intensity SCT. This is the protocol I had but with post transplant TKI therapy to ensure effective control of any residual disease and keep it at a

by Gst (Aug 3)

Hello again,
I'm good thanks but still very anxious as it's not long now before I'm admitted. Your thread has made me think about it all this evening and the fact that the SCT will be life changing

by Gst (Aug 3)

Hi,
I am planning for a reduced intensity SCT.
Category: Treating CML

Replies: 13

Last updated: 8 August 2015
robert mcadie on 23 July 2015

Category: Side effects

Replies: 11

Last updated: 13 August 2015

dasatinib
by robert mcadie (Aug 13)

Quick update, I am starting on 100mg bosutinib next Monday. Raigmore hospital did not have a license to dispense it but applied for one and got it. My consultant is starting me off on 100mg but she

by David Fitz (Aug 6)

I've been having a few problems with elevated pulse and a pounding heart recently too. Not too bad, but enough to warrant it to be checked out.
Chest x-ray, CT and EKG all were pretty normal.

by robert mcadie (Aug 4)

Thanks for advice Sandy. Still waiting for phone call from hospital but am very short of breath when I do anything physical- stairs, washing car etc. Will defo ask for a second opinion in Glasgow.

by wshi2001 (Jul 31)

hi, Rab,

I've just stopped dasatinib 3 days ago, the symptoms of heart has improved a lot, I can finally have a good night of sleep. I'm not sure why you have to take 800mg Imatinib at this
Category: Side effects

Replies: 11

Last updated: 13 August 2015
Olivia on 21 July 2015

Category: Getting help

Replies: 2

Last updated: 22 July 2015

Article in Daily Telegraph
by sandy craine (Jul 22)

I too hid my diagnosis from most people in the first few weeks.... especially my parents and my daughter. I suppose the shock of it all, due to the fact that I was obviously about to enter

by cdw5000 (Jul 21)

Only my boss and head of HR know I have CML. Admittedly I've move companies since dx, but nobody is any the wiser. A bizarre sense of 'wanting to carry on as normal' kept me in the job I was in when

by Olivia (Jul 21)

This article appeared yesterday (20 July). Although the writer doesn't say as much, I suspect her husband has cml... http://www.telegraph.co.uk/lifestyle/11738594/I-kept-my-husbands-cancer-...
Category: Getting help

Replies: 2

Last updated: 22 July 2015
chrissie on 21 July 2015

Category: Treating CML

Replies: 17

Last updated: 8 September 2015

DESTINY update
by chrissie (Sep 8)

I'm into the 11th month now. Just got my PCR back from HH for Month 10 after a 3 week wait - still hanging in there at 0.034% IS after a couple of earlier blips. I guess as we're tested every 4

by darley (Aug 30)

Check up last week and all remains well and good so far. After 15 years on imatanib if all remains well then this could be my last month on it :)

by darley (Aug 19)

I'm a month behind you. I go to Leeds next Wednesday and if everything is good that will be me stopping glyvec after 15 years on it.

by chrissie (Aug 18)

..... with your treatment free "new" life. You've certainly got nice low PCRs well sustained over the past year. We shall all be watching with interest, so please keep us posted.
Grapefruit for
Category: Treating CML

Replies: 17

Last updated: 8 September 2015
chrissie on 10 July 2015

Category: Uncategorised

Replies: 1

Last updated: 10 July 2015

DESTINY and HH results
by darley (Jul 10)

I've just completed month 10. Managed from Leeds. No delays.
So far so good :)

by chrissie (Jul 10)

Hi
I'm in month 9 of DESTINY but am finding my PCR results from HH are very slow in coming through. Blood is taken at my local hospital (Exeter) every 4 weeks on the trial and sent to HH but I
Category: Uncategorised

Replies: 1

Last updated: 10 July 2015
Citron on 13 July 2015

Category: Blood tests

Replies: 3

Last updated: 21 July 2015

Byopsis 3 Months tasigna?
by wshi2001 (Jul 21)

hi, there,

I did not have any biopsy after the initial diagnosis. As the others said, nowadays, they just do the blood test (pcr). Its not necessary to done bone marrow biopsy, because

by Lucas (Jul 13)

hi, i'm brazilian and i can understand your english :)
your husband's doctor is right. the time to measure cytogenetic and molecular response is 3 months after start therapy. it's not common

by darley (Jul 13)

Why are they having to do a bone marrow biopsy at all? Doesn't the hospital he's treated at have the facilities (or access to them) to do the full blood counts and including PCR and Bcr-Abl

by Citron (Jul 13)

Hello, My husband (27 years) has been diagnosticated with CML on the 9th April. He started with Tasigna (600mg/day) on the 24 April but after 2 weeks he had to stop it because the platelets were
Category: Blood tests

Replies: 3

Last updated: 21 July 2015
imatinib fatigue on 10 July 2015

Category: Side effects

Replies: 4

Last updated: 13 July 2015

been on imatinib 5 months
by darley (Jul 13)

Having had it for 22 years and gone through hell and back in the "old days" before TKI's when treatment options were severely limited, I can absolutely confirm that taking the likes of imatanib is a

by darley (Jul 13)

Rather than just adjusting things and reducing your medication, I'd strongly advise you to talk this through with your consultant. Believe me, you REALLY don't want to run the risk of your

by sandy craine (Jul 13)

You should not under any circumstances reduce your daily dose- You do not say which TKI your are taking 400mg of--- I assume it is imatinib? Fatigue is a side effect but as you go on you will find

by imatinib fatigue (Jul 10)

the adhd drug really helps with my energy and makes me feel normal, but im sure this is not good long term. but at the same time i feel its the only way to go out and enjoy a day out at times.
has
Category: Side effects

Replies: 4

Last updated: 13 July 2015
soupy on 13 July 2015

Category: Getting help

Replies: 1

Last updated: 13 July 2015

link for Carers/patients day?
by sandy craine (Jul 13)

There is no link set up as yet. Details will follow over the next month or so.
sandy

by soupy (Jul 13)

Help! I can't find the link for the booking details for this year's day. Please could it be put up again? Thanks.
Category: Getting help

Replies: 1

Last updated: 13 July 2015
AnthonyI on 5 July 2015

Category: Uncategorised

Replies: 1

Last updated: 7 July 2015

Itchy Rash on Arms
by sandy craine (Jul 7)

Hi,

I think a lot of people experience some kind of rash when taking a TKI - some more that others - I certainly did when I first took imatinib (Glivec/Gleevec) but it was treated successfully

by AnthonyI (Jul 5)

Hello All,
I hope all is well with everyone on here. I am inquiring if anyone knows about an itchy rash that would develop on one's arms and chest shortly after starting Gleevec. My mother has
Category: Uncategorised

Replies: 1

Last updated: 7 July 2015
Max on 5 July 2015

Category: Reproductive health

Replies: 2

Last updated: 26 July 2015

Fathering while taking bosutinib
by Max (Jul 26)

Thanks a lot for your answer!

I'll try to find out more about bosutinib.

by sandy craine (Jul 7)

Hi Max,

over the years there have been lots of discussions about this subject. We know that there is a risk for women being treated with TKIs and the advice is for them not to get pregnant

by Max (Jul 5)

Hi all
I would like to know any information about becoming a father while taking bosutinib.

Has anybody become a father without discontinuation of taking it?
Thanks in advance!
Best regards
Category: Reproductive health

Replies: 2

Last updated: 26 July 2015
sandy craine on 3 July 2015

Category: Getting help

Replies: 2

Last updated: 4 July 2015

UK Patient/Carer Education Day
by Parklife (Jul 4)

Top of my head...
Long term or irreversible effects of prolonged TKI use. Seems to be an increaseing confusion each time I ask the question, although I am finding some people slowing down young,

by cdw5000 (Jul 3)

Off the top of my head:
Clinician's view of NICE/CDF review of TKIs

Current view on long term prognosis

New developments - i.e. any new TKIs, T-Cell trials etc.

TKIs long term

by sandy craine (Jul 3)

As some of you already know, this years UK CML Patient Education Day will be on November 14th at Hammersmith Hospital Du Cane Road, West London. If you have suggestions for topics that you would
Category: Getting help

Replies: 2

Last updated: 4 July 2015
sandy craine on 26 June 2015

Category: Food & fitness

Replies: 1

Last updated: 27 June 2015

Magnesium vs Calcium levels
by johnw1001 (Jun 27)

Hi Sandy,

This is very useful information as we are not quite sure of the effects of long term use of tkis on bone health.Currently am on a calcium/magnesium supplement for muscle cramps and

by sandy craine (Jun 26)

The following articles may be of interest to those of us who may want to supplement magnesium to counter some side effects of TKIs and ... and quite frankly, life in general! Sandy http://www.
Category: Food & fitness

Replies: 1

Last updated: 27 June 2015
Parklife on 14 June 2015

Category: Uncategorised

Replies: 6

Last updated: 6 July 2015

Any opinions greatly appreciated.
by Parklife (Jul 6)

Interesting!
First of all many thanks for taking the time to get in touch.
I say interesting because whenever I raise these issues in clinic I am met with raised eyebrows and have even been told

by vickiep (Jul 6)

Oh that old chestnut! Absolutely ditto with your symptoms as many of us are and in exactly the same places. Sandy's advice is good and I followed all of her advice, but still consumed a great deal

by Parklife (Jun 17)

Hi Sandy,
Thanks, as always, for getting back to me. I'm really at my wit's end with the pain, as you can probably tell. I'm scared to move for fear of making the pain worse or injuring myself. The

by sandy craine (Jun 17)

Hi John,
re: pcr vs bmb. I think the current thinking is that it is not worth doing a bmb unless there is a good reason. PCR from peripheral blood has proven to be a less invasive way of
Category: Uncategorised

Replies: 6

Last updated: 6 July 2015