TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

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Lyndsey on 21 July 2011

Category: Uncategorised

Replies: 13

Last updated: 28 July 2011

Newly diagnosed
by Lyndsey (Jul 28)

Thank you so much for taking the time to reassure me. This site has been a life line to me and in a short space of time I have learned lots about cml. It truly is amazing that this drug has not been

by keith Pratt (Jul 28)

Hello Lyndsey
I agree, it sure it some sort of shock being dx with such a thing when you feel so fit and well. Same happened to me in 1996, I was training 10 hours a week in the gym, but still got

by Olivia (Jul 27)

Hi Lyndsey
I was diagnosed nearly 2 years ago, and like yourself have had spells of doom & gloom - in spite of my consultant (in Edinburgh) saying "If I had to have leukaemia, this is the kind

by Lyndsey (Jul 21)

Thank you do much for reply this forum really has been helping especially after the last couple of days can't really pull myself out of this doom and gloom outlook. My consultant has been nothing
Category: Uncategorised

Replies: 13

Last updated: 28 July 2011
Basil from RSA on 23 July 2011

Category: Uncategorised

Replies: 3

Last updated: 27 July 2011

Still "undetectable"
by sandy craine (Jul 27)

HI Basil, Hi Barb,
Thanks to you both for your updates on your progress towards a 'cure'. It is particularly exciting to read about Basil's ongoing pcr's which even when

by Basil from RSA (Jul 24)

Hi Barbs,

I am very happy that you have decided to follow this path.

What is amazing in may case is that from a few positive results in-between, I have now had two PCRU's. Please let me

by Barbs (Jul 24)

I'm so happy for you Basil & I'm hoping to follow in your footsteps. I've had 2 negative PCR's since stopping my Glivec at the beginning of May - will be having my third test done on Thursday

by Basil from RSA (Jul 23)

Hi to all.

I just thought it important to let you know of my continuing good fortune.

I was diagnosed with CML in 2003. At first was put on Inteferon A but has to discontinue after a
Category: Uncategorised

Replies: 3

Last updated: 27 July 2011
Steven Davies on 22 July 2011

Category: Uncategorised

Replies: 1

Last updated: 24 July 2011

Disgusting people
by sandy craine (Jul 24)

hi

steven.... this is the worst attack of spam ever... i have just spent 3 hours deleting it all.. not the best way to end my holdiay ;o/
best,

Sandy

by Steven Davies (Jul 22)

What type of low life, crash this site as they have done and left sales messages over so many postings.
My suggestion is to to as I have done and leave a message on there website teliing them of
Category: Uncategorised

Replies: 1

Last updated: 24 July 2011
Diana Green on 17 July 2011

Category: Uncategorised

Replies: 3

Last updated: 19 July 2011

Can these aches and pains really be Glivec...five years in?
by fehr (Jul 19)

It may be that this has nothing to do with Glivec. It is likely to be spinal - the nerves feeding your legs run through the lower spine and wear can cause inflamation of the nerves and result in

by Diana Green (Jul 19)

Thanks very much for the tip, Stuart. I shall certainly try the juice. If it helps with all the other side effects too, it will be money well spent! I will report back.
Regards,
Diana

by Stuart Johnston (Jul 18)

in response to your side effects of glivec, i too was experiencing most that you described. i have been on glivec since may 2009.

whilst the effects were managable they are a bit of a

by Diana Green (Jul 17)

After nearly five years on Glivec I've started to get tiresome and debilitating aches and pains in my legs/lower back, and I wonder if this can be a new side effect after all this time.
I've always
Category: Uncategorised

Replies: 3

Last updated: 19 July 2011
ni2i on 14 July 2011

Category: Uncategorised

Replies: 6

Last updated: 19 July 2011

PCR result
by david_a (Jul 19)

Hi Naomii,

Well done! The drugs are working!

I think your results are good.

Just to give you an idea mine were as follows:-

diagnosed 55%

3 months 14%

6 months 0.

by ni2i (Jul 16)

Thank you everyone, i assumed it was good news but was a little unsure as i didn't know what rate was expected. You have all made me feel great.
Thanks again
Oh and good luck Emma with your biopsy

by tommy c (Jul 15)

sounds that all is going well, when i was dianosed 2007 prof clark at liverpool royal explained it like this, your around 100% at start of treatment at twelve months in you would want to be around 1

by EmChops (Jul 15)

i think that is good news.

I have just had my biopsy this week, will get results in 2 weeks, i hope mine look as good as yours!!

Well done

em x
Category: Uncategorised

Replies: 6

Last updated: 19 July 2011
chrissie on 13 July 2011

Category: Uncategorised

Replies: 4

Last updated: 23 August 2011

Uncomfortably tingling feet and hands
by chrissie (Aug 23)

Have now had my appt to have my nerve endings checked and, of course, the pins and needles had more or less stopped by the time the appt came through. All seems OK according to technician.
Also

by skiinglaketahoe (Jul 16)

Hi Chrissie
Electrophysiology tests are to do with nerve conduction tests, ie see how well the nerves are working. The reason for doing these tests is that rarely pins and needles can be assosciated

by chrissie (Jul 15)

Hi Susan
Thank you for your reply. I had a call from the hospital today to tell me I have an appt at the Electrophysiology Dept (whatever that is)to have a look at my feet. Goodness knows what they'

by skiinglaketahoe (Jul 14)

Hi Chrissie
Sorry to hear that you are suffering with pins and needles. I suffered very badly with this whilst I was on both glivec and dasatanib. Not only did I have pins and needles in my hands
Category: Uncategorised

Replies: 4

Last updated: 23 August 2011
chrissie on 27 July 2011

Category: Uncategorised

Replies: 5

Last updated: 16 August 2011

Imatanib and simvastatin
by fehr (Aug 16)

I am on imatinib 400mg. After a cholesterol test, on the instruction of an endocrinologist, I changed from Pravastatin 20mg to Simvastatin 40mg. I also made some modest

by Vangogh (Aug 5)

Hi
I was on Simvastatin when dx 3 years ago. Dr. Ho at Kings said that should I still need to take a statin I should change to Pravastatin as it was tolerated by Glivec. Luckily enough my

by chrissie (Aug 1)

Thank you for your replies, Sandy and Andy.
I still cannot believe how much better I feel now I've stopped taking simvastatin. One possible downside to stopping is that while digging around on

by Andy Parkin (Jul 31)

Chrissie,
I was taking simavastatin before being diagnosed with CML in Feb 2007. My cholestoral readings were high and hence the prescription for simavastatin. I was prescribed Imatinib for the CML
Category: Uncategorised

Replies: 5

Last updated: 16 August 2011
sandy craine on 11 July 2011

Category: Uncategorised

Replies: 4

Last updated: 13 July 2011

Holiday for me ;o)
by karen (Jul 13)

Have a fantastic break and have a glass or two of wine as well!

K

by Jojo (Jul 13)

Hi Sandy

Just to say have a well deserved break and come back refreshed.

Best wishes

Joanna

by Peter Miles (Jul 12)

Have a wonderful holiday Sandy - a much deserved rest! Crete is beautiful - first visted there in about 1980 when I was "bumming" around the Greek Islands during the summer vacation.

We are

by Don Adkins (Jul 12)

Hi Sandy,
Have a great vacation! Relax your body and mind.
Regards,

Don
Category: Uncategorised

Replies: 4

Last updated: 13 July 2011
robforrest on 9 July 2011

Category: Uncategorised

Replies: 7

Last updated: 11 July 2011

CML, Glivec and Alcohol
by vickiep (Jul 11)

We could wrap ourselves in cotton wool, or we could get on with enjoying life as much as we can...?!!!!
I too am at a stuck point with my results, but I really don't attribute that to drinking

by vincentkeunen (Jul 11)

Hello Rob,
Alcohol in general is not very good for cancer. It contains a lot of sugar and has a rather high impact on your glycemia, which has a number of influences on your body, making it more

by sandy craine (Jul 11)

Hi Rob,

stability of pcr ratios is the key rather than the actual numbers. Yes you have a good response to imatinib.

'ideally' a log reduction of 3 is considered (in general) place to be

by robforrest (Jul 10)

I think part of the problem is that I haven't seen my consultant since this last test came back meaning that we haven't had chance to discuss the available options and concerns. Do you really think
Category: Uncategorised

Replies: 7

Last updated: 11 July 2011
sandy craine on 11 July 2011

Category: Uncategorised

Replies: 1

Last updated: 16 July 2011

Single stem cell -discovery breakthrough
by JulianaF (Jul 16)

Neurodegenerative problems like Alzheimer's and Parkinson's disease deprive millions of their quality of life. Remedies elude the best scientific minds, but a recent breakthrough may change that,

by sandy craine (Jul 11)

For the first time since stem cells were discovered here 50 years ago, scientists have isolated a human blood stem cell in its purest form – as a single stem cell capable of regenerating the entire
Category: Uncategorised

Replies: 1

Last updated: 16 July 2011
Ali Loram on 10 July 2011

Category: Uncategorised

Replies: 2

Last updated: 13 July 2011

Rising PCR & Bosutinib
by Jojo (Jul 13)

Hi Ali - so sorry to hear you're having on-going problems. Is there a chance they would reconsider you for the PACE trial if your results are rising? It must be a real worry. Yes maybe the milk

by sandy craine (Jul 11)

Hi Ali... you liver is obviously complaining loud and clear! The only thing I can suggest is that you consider taking a liver supporting supplement- many are available in good chemists etc- but

by Ali Loram (Jul 10)

Hi all, just to let you know whats happening. I have now had three rising PCRS, having gone from virtually undetectable to 1.6 in the last four weeks. I was refused the pace trial as I was too well
Category: Uncategorised

Replies: 2

Last updated: 13 July 2011
EmChops on 7 July 2011

Category: Uncategorised

Replies: 2

Last updated: 8 July 2011

finally back on Nilotanib!
by Jojo (Jul 8)

Hi Em - just give yourself time and hopefully things will settle. It is hard, I understand - my nurse used to say I needed to be a patient patient, and some people's body's (excuse the grammer) just

by marsy (Jul 7)

Keep going Emma. As you say there are people in a lot worse situation to our group. We are in a relatively good place with the medication available.
Take Care
Dave M

by EmChops (Jul 7)

5 weeks it took for my platelets and neutrophils to get up to a level a could start taking the Nilotanib again, 5 weeks of nothing! I have a bone marrow biopsy next week, just hoping i will have
Category: Uncategorised

Replies: 2

Last updated: 8 July 2011
Jojo on 8 July 2011

Category: Uncategorised

Replies: 4

Last updated: 8 July 2011

update on me...
by Jojo (Jul 8)

Thanks for your message Sandy -and the comments about my young age :)I was offered the chance to join the PACE trial - well I went for an initial meeting - but for various reasons I decided not to

by Jojo (Jul 8)

Hi Jackie - have added you on Facebook so we can compare notes and experiences. I hope plans are progressing well for your transplant and you are able to rest whilst at home with your family. Been

by jackieb38 (Jul 8)

Hi Joanna,
I am due to have a transplant in the QE in Birmingham soon as I stopped responding to Glivec, went onto Dasatinib but then went quickly to blast phase and they found I now have AML too.

by sandy craine (Jul 8)

Hi Joanna, I am not surprised that you have opted for the traditional transplant given you have the 'multi-drug resistant mutation' T135i. However, I am surprised that you have not been offered to
Category: Uncategorised

Replies: 4

Last updated: 8 July 2011
karen on 5 July 2011

Category: Uncategorised

Replies: 4

Last updated: 13 July 2011

Lung Infection
by karen (Jul 13)

Thank you for all the comments - went back to the hospital on Friday after a week of the most awful side effects from the drugs (although on the plus side i did lose 9lbs!) to be told they think

by vickiep (Jul 11)

Hi Karena,

So sorry to hear you have this horrible complication, don't spose you do a lot of gardening do you? I only ask because a friend of mine was diagnosed with this and, although she was

by Jojo (Jul 6)

Hi Karena

No real knowledge of this really, just wanted to say hope you start feeling better soon. I do remember when I started on Dasatinib that pleural effusion was one of the possible side-

by sandy craine (Jul 5)

hi Karena,

I am sorry to hear this- you are right it is quite rare and only usually seen in patients such as those going through transplant or heavy duty chemotherapy. Do keep taking the anti
Category: Uncategorised

Replies: 4

Last updated: 13 July 2011
sandy craine on 5 July 2011

Category: Uncategorised

Replies: 3

Last updated: 21 July 2011

IM intolerant + IM resistant CML: 2 FADs will now become 1
by sandy craine (Jul 21)

There seems to be a further delay in the date of publication of the FAD. I will update here when I can work out the likely date.
Sandy

sent from an internet cafe in Loutro- south west coast of

by sandy craine (Jul 5)

Hi Alistair... yes you are right. CMLSg as an official consultee will be notified on 18th July- and are subject to strict confidentiality agreements and therefore have to sit on our hands (and shut

by Alastair C (Jul 5)

Sandy, I assume that those of us who commented on the original ACD are not counted as consultees - it is only those organisations such as CMLSg who will get the document prior to public release.
I

by sandy craine (Jul 5)

I have just heard that both the appraisal for dasatinib; nilotinib; HD-imatainb in IM resistant CML will now be combined with appraisal for dasatinib;nilotinib in IM intolerant CML. The committee
Category: Uncategorised

Replies: 3

Last updated: 21 July 2011
Smahmood on 2 July 2011

Category: Uncategorised

Replies: 3

Last updated: 3 July 2011

Hammersmith Hospital
by Smahmood (Jul 3)

Thanks for the info/help.

Regards

Shaz

by michael (Jul 3)

Dr Ho has returned to Singapore to head up his own CML unit,He was at Kings for fifteen years and will be hard to replace.

Shaz why not go to one of the Hammersmiths surport group meetings?

by sandy craine (Jul 3)

Hi Shaz,
you are obviously disappointed that you dr. has moved on. Unfortunately this happens to most of us over time. I have been treated at Hammersmith since 1998 and have had several doctors who

by Smahmood (Jul 2)

Hi

I am a patient at the kings for the past one year. My consultant (Dr Ho) left last year. In my previous three visits to the hospital I was seen by different doctors and all of them had
Category: Uncategorised

Replies: 3

Last updated: 3 July 2011
John M on 30 June 2011

Category: Uncategorised

Replies: 1

Last updated: 1 July 2011

Confirmed GVHD after second DLI
by sandy craine (Jul 1)

Dear John... this is a good sign given you have only needed 2 DLI's to produce signs that you have had an immune response- i.e graft versus leukamia (GVL).

I do hope the GVHD is not too

by John M (Jun 30)

Just sharing some good news received today. I have GVHD (skin and mouth). Since I relapsed last year this is good news.
Best from me to all forum members!
John
Category: Uncategorised

Replies: 1

Last updated: 1 July 2011
JONESYGEEZ on 30 June 2011

Category: Uncategorised

Replies: 2

Last updated: 12 July 2011

Update on my dad - with a little more info
by ricaluanna (Jul 12)

praying for your father's recovery.
__________________________________

Best info about:mastercard prepaid debit card,transfer money abroad,green car insurance.

by sandy craine (Jul 1)

Hi Nick,

just one question - have they already identified a matched donor?
If his white count was only 23? then that is good- can you find out what his blast cell count was? it is the blast

by JONESYGEEZ (Jun 30)

Hi All,
I'm glad I found this site, even the little snippets of info you all gave me helps give my dad hope. Like today he's been told he'll be admitted to Hammersmith in 2/3 weeks and I could
Category: Uncategorised

Replies: 2

Last updated: 12 July 2011
Vangogh on 30 June 2011

Category: Uncategorised

Replies: 2

Last updated: 30 June 2011

BCR/ABL Test Results
by Don Adkins (Jun 30)

Great news Tony! Go out and celebrate..
Regards,

Don

by sandy craine (Jun 30)

Many congratulations, you must be feeling great ;o)
Sandy

by Vangogh (Jun 30)

Hi

Just received my lastest test results. I have been hovering around 0.037% for a year now, and thought that was going to be about it. But todays results are...UNDETECTABLE !!! I am really
Category: Uncategorised

Replies: 2

Last updated: 30 June 2011
sandy craine on 29 June 2011

Category: Uncategorised

Replies: 1

Last updated: 29 June 2011

Life saving Cord blood stem cells- donations needed
by michael (Jun 29)

Yes I agree its outstanding work,Kings was the NHS hospital to take part having a large black and mixed race communitie,Some of the donating cord blood has already helped older sibblings.

by sandy craine (Jun 29)

All those placentas that are discarded after birth contain life giving stem cells for use in stem cell transplants... see link below which explains why donating cord blood is so crucial: in
Category: Uncategorised

Replies: 1

Last updated: 29 June 2011