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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
keith Pratt on 28 June 2011

Category: Uncategorised

Replies: 4

Last updated: 13 July 2011

Possible eye problem with Nilotinib?
by Bee (Jul 13)

The lasering off of the membrane was easy peasy today. No drops, no pain, no flashing lights and a near miraculous return to clear vision immediately! Something called a YAG laser was used for this

by keith Pratt (Jul 5)

Spot on there Bee, took near on a week of arguing with receptionists, visiting Eye Casualty at Reading Hospital, where they did not have any doctors available, but eventually found a very nice young

by Bee (Jun 29)

Hi Keith
Although I'm not the one with CML (that's Ted) I've had cataracts and had the lens replaced - and now, 2 years later I've a membrane growing on the plastic lens giving me cloudy vision.....

by tommy c (Jun 28)

hi keith

read with intrest your eye issue, have cml since sept 07 and take 800mg glivic,had most of the usuall side effects which have subsided over time, i was 6 months in when my eye problem
Category: Uncategorised

Replies: 4

Last updated: 13 July 2011
chrissie on 28 June 2011

Category: Uncategorised

Replies: 2

Last updated: 29 June 2011

Same response from Earl Howe to my MP. At least Mr Burstow heard the question!!
by chrissie (Jun 29)

Yesterday I emailed my MP regarding both responses to his PQ pointing out that Paul Burstow's answer was highly ambiguous and giving him a list of possible meanings for sentences 2 and 3 and

by sandy craine (Jun 29)

I have written the following letter to Earl Howe after receiving a rather irritating reply similar to yours. see below:
I think that the FAD will be published at some time in early July, we have a

by chrissie (Jun 28)

On June 22 I received exactly the same letter from Earl Howe to my MP as others on this site so I shan't bother posting the contents. This reply doesn't answer my question which my MP submitted (
Category: Uncategorised

Replies: 2

Last updated: 29 June 2011
EmChops on 27 June 2011

Category: Uncategorised

Replies: 5

Last updated: 5 July 2011

questions i feel silly asking my consultant...
by EmChops (Jul 5)

Thank you everyone for taking the time to write reply's to my questions.

I really do appreciate all your help as I try to understand and come to terms with having CML.

Could not get by

by Richard42 (Jun 28)

Your questions are excellent and reflect the experience of many - I don't think there are any particular answers to any of them (except perhaps cytogenic remission, which is as Sandy says somewhere

by sandy craine (Jun 28)

Q. At what percentage are you in cytogenetic remission?

A. Depends on which lab does your pcr. There is no standardisation of labs as yet- this has

been an ongoing project for some

by Jojo (Jun 28)

Hi Emma

I'd just thought I'd chip in, not that I'm an expert or anything. My consultant never uses the word remission, he talks about levels of response. He also talks about 'log reduction' -
Category: Uncategorised

Replies: 5

Last updated: 5 July 2011
michelle on 26 June 2011

Category: Uncategorised

Replies: 3

Last updated: 22 August 2013

dasatanib - itchy acne like skin
by RodM (Aug 22)

Hi
I also got the spots/rash and itchy skin, but 17 months after starting Dasatinib, it has mostly gone away, with things calming down after about 6 months.
I definitely still get spots,

by marsy (Jun 26)

Hi Michelle,
I'm on the Spirit 2 trial and after a few weeks the only side effect I have is the acne spots. I started on the trial last September and at first was getting some rashes on the body(

by Jojo (Jun 26)

Hi Michelle

Yes I do think there can be skin problems with the TKIs including dasatinib. In my case it was being monitored by my consultant and nurse as part of the Spirit 2 trial. It is

by michelle (Jun 26)

Hi, I have only been on dasatanib for 3 weeks. Made switch from glivec which I had been taking since 2003. I have had some awful headaches. But now i have started getting acne like skin. But my skin
Category: Uncategorised

Replies: 3

Last updated: 22 August 2013
JONESYGEEZ on 21 June 2011

Category: Uncategorised

Replies: 1

Last updated: 21 June 2011

Chemotherapy
by sandy craine (Jun 21)

See my post below

by JONESYGEEZ (Jun 21)

Hi All,
Just a real quick and direct question, can chemo cure or remission CML?
My dads got 7 days starting this friday then they said they'd monitor him? I thought it was chemo then transplant not
Category: Uncategorised

Replies: 1

Last updated: 21 June 2011
chrissie on 20 June 2011

Category: Uncategorised

Replies: 1

Last updated: 20 June 2011

Reply to my MP's PQ from Paul Burstow, Min. of State for Care Services at DoH
by Alastair C (Jun 20)

What I sincerely hope this means is that they are wondering if spending a lot of money with various health statisticians at for example Exeter, Souhampton and West Midlands is value for money

by chrissie (Jun 20)

My MP has submitted a written PQ to both Paul Burstow and Andrew Lansley. Below I have posted the question and Paul Burstow's reply. Nothing yet from Lansley, but my MP has asked me to contact him
Category: Uncategorised

Replies: 1

Last updated: 20 June 2011
Smahmood on 19 June 2011

Category: Uncategorised

Replies: 2

Last updated: 20 June 2011

Glivec
by Smahmood (Jun 20)

Hi sandy
Thanks for the help/info.
Regards
Shaz

by sandy craine (Jun 20)

I am sure that it is OK to take supplements whilst taking TKI therapy. Take vitamin supplements with food- maybe with a different meal than imatinib (Glivec).
check that there is nothing in the

by Smahmood (Jun 19)

Hello everyone
Does anyone know if I can take wellman support supplement whilst on glivec 400mg daily?
Thanks

Shaz
Category: Uncategorised

Replies: 2

Last updated: 20 June 2011
jackieb38 on 18 June 2011

Category: Uncategorised

Replies: 3

Last updated: 20 June 2011

Now in Blast phase
by Jojo (Jun 20)

Hi Jackie

I'm so sorry and shocked to hear of the change in your cml - when I saw the post about your platelets dropping I meant to msg you as mine did that on dasatinib(went down to 12) and

by michael (Jun 19)

Quite a few people jump from the chronic stage straight to the blast stage( bypassing the accerated stage that would show blasts in the peripheral blood).

Jackie I Spend a couple days a week

by sandy craine (Jun 19)

Dear Jackie... I am sorry to hear this and I am amazed you had 40% blasts in your marrow without evidence in you peripheral blood- surely there must have been blasts in your blood?
- but I am glad

by jackieb38 (Jun 18)

Hi all,

Just a progress report on me!

I was admitted to hospital Thursday as, after two weeks off dasatinib, my platelets still hadn't recovered and my white count had shot up, so they
Category: Uncategorised

Replies: 3

Last updated: 20 June 2011
Steven Davies on 17 June 2011

Category: Uncategorised

Replies: 5

Last updated: 19 June 2011

Now a letter from Earl Howe, Parlimentary Under Secretary of Stae for Quality (Lords)
by sandy craine (Jun 19)

We intend to answer the letter from Earl Howe (and Andrew Lansley) asking for answers to the original points contained in our letter. These answers are of course authored by an official- so we will

by David (Jun 19)

I too have received the same letter from Andrew Lansley via my MP - almost exactly word for word.
It doesn't, of course, answer any of the points I made, such as the Scottish question, the

by sandy craine (Jun 18)

We have also had a reply from Howe which is the same apart from a first paragraph which stresses that Howe is replying on behalf of Andrew Lansley as well has himself. A second para acknowledges the

by irenekallison (Jun 18)

My MP forwarded the same letter - which arrived here today and included the letter from Sir Andrew Dillon.
Category: Uncategorised

Replies: 5

Last updated: 19 June 2011
Apryl on 17 June 2011

Category: Uncategorised

Replies: 5

Last updated: 20 June 2011

FEELING VERY DOWN
by Ali Loram (Jun 20)

Hi Apryl,

I asked my consultant at my local hospital to refer me to HH. I think its polite to do it this way as your consultant has been treating you & can also pass on all your patient

by Sarah R (Jun 19)

Dear Apryl
My son is under the sole care of the Hammersmith which is his choice. He got there simply by making his wishes clear to his GP who wrote to Professor Applerley requesting it. Give it a

by Apryl (Jun 19)

Thanks for your replies Ali & Sandy

I was not aware that you could have joint care, its certainly something I will look into.

I must admit, I did feel very short changed after my

by sandy craine (Jun 18)

Apryl, as long as you respond to therapy (in this case nilotinib) you should be guaranteed continuation no matter what the outcome with NICE is.

However, I would encourage you to change your
Category: Uncategorised

Replies: 5

Last updated: 20 June 2011