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devenavani on 25 September 2018

Category: Uncategorised

Replies: 23

Last updated: 19 October 2018

Running out of options
by David Fitz (Oct 19)

If you put the DOI (digital object identifier) into http://www.sci-hub.tw you can usually get the full paper.
For example, the DOI for the latest DESTINY data is 10.1016/S2352-3026(17)

by LabNoir (Oct 19)

Hi Kirk
Thanks. I have actually come across this paper and showed it to my doc (who was not aware of it..), it is just counterintuitive that a lower dose would lead to better response. I do have to

by RC Kirk (Oct 19)

Hi Vince,
Welcome to CML Support.
There was a study titled: "Early Results of Lower Dose Dasatinib (50 mg Daily) as Frontline Therapy for Newly Diagnosed Chronic-Phase Chronic Myeloid Leukemia"

by LabNoir (Oct 18)

Hi Scuba
may be you have explained this elsewhere but can you elaborate on why 100mg should not be used initially ? I understand the probability of PE been the main issue but could there be
Category: Uncategorised

Replies: 24

Last updated: 19 October 2018
POPPY on 19 October 2018

Category: Treating CML

Replies: 3

Last updated: 19 October 2018

To proceed with Allo SCT or no?
by Tbrand (Oct 19)

I would get a second opinion from a specialist. I was diagnosed borderline accel/ blast phase. Prior to the availability of a specialist they wanted to transport me to an advanced cancer

by RC Kirk (Oct 19)

Poppy, I'm wondering if he's been taking the nilotinib twice a day?
Thanks, Kirk

by RC Kirk (Oct 19)

Hello Poppy,
My first comment is that it seems a little too early to tell if his CML is progressing from what you've said so far. When you said his bad white cells are at 2%, do mean blast

by POPPY (Oct 19)

Greetings All.
My boyfriend (age 28) has been diagnosed with CML on 30/09/18. He has been taking Nilotinib 200mg ever since then up till 16/10/18.
On his doctor's appointment on 16/10/18, his bad
Category: Treating CML

Replies: 4

Last updated: 19 October 2018
ian hinley on 17 October 2018

Category: Treating CML

Replies: 3

Last updated: 19 October 2018

Starting TFR in November after 9 years of daily drugs
by kat73 (Oct 19)

Yes, it will I'm sure - the key to the lock is in the immune system - there's obviously something different about the immune response of someone coming off Sprycel at DMR and zooming back to the

by ian hinley (Oct 18)

Hi Kat, good to hear from you :) No plural effusions for me and have tolerated sprycel really well. I had to push for TFR myself as everything is going well but wanted to try and see, also

by kat73 (Oct 17)

That's great, Ian! Can't wait to continue your story. So far, that story is exactly the same as mine, except nobody is talking TFR to me. That's OK. I'm willing to wait

by ian hinley (Oct 17)

Hi, my name is Ian and I haven't posted on here for a good few years as treatment has been uneventful, thank goodness!
My story in a nutshell is cml diagnosed 9 years ago at 65% with
Category: Treating CML

Replies: 4

Last updated: 19 October 2018
chrissie on 19 October 2018

Category: Blood tests

Replies: 6

Last updated: 19 October 2018

Frequency of PCR testing
by chrissie (Oct 19)

Thanks, looking good for you
Best
Chrissie

by chrissie (Oct 19)

Thanks, another one at 6 weeks.
Best
Chrissie

by chrissie (Oct 19)

Thanks David. 6 weeks seems a sensible period in between or even 2 months. Not too happy leaving it at 3 months but, providing my hospital are prepared to pay for more frequent PCR testing, and my

by RC Kirk (Oct 19)

Hi Chrissie,
For what it's worth, most of my PCR tests have been at 3 month intervals.
Gleevec 400mg/day - 2014 000.174%, 000.088%, 000.064% 2015 000.049%
Gleevec 200mg
Category: Blood tests

Replies: 7

Last updated: 19 October 2018
Alaina on 13 October 2018

Category: Uncategorised

Replies: 18

Last updated: 19 October 2018

Tasigna and Supplements
by Alaina (Oct 19)

Scuba,

You need to be a registered consulant or paid educator. My mind is blown with the amount of knowledge you (and others) have and give on these threads. THANK YOU! I'll admit I am

by Alaina (Oct 19)

Denise, Thank you for the advice! I did not know this!

by scuba (Oct 19)

Hi Alaina,
Your vitamin D level is dangerously low. Vitamin D is often thought of as the bone vitamin and that is true - but what vitamin D really does is activate our bone marrow - bone cells and

by Felix (Oct 19)

Hi, best not to take Vitamin D at night ,it raises your Melatonin which is a sleep hormone.You will probably have a restless night .Best to take it in the morning .Denise.
Category: Uncategorised

Replies: 19

Last updated: 19 October 2018
Felix on 18 October 2018

Category: Side effects

Replies: 1

Last updated: 19 October 2018

Mouth problems on Imatinib
by David Fitz (Oct 19)

Hi Denise,
I spoke to my sister, who's a dental surgeon, and she said that lines along the inside of the cheek that go from back to front roughly where the two sets of teeth meet are very common in

by Felix (Oct 18)

Hello all,I am a bit worried.A few weeks ago I bit the inside of my cheek when eating I haven’t done that for years and within a few seconds I had bitten the other side .When I looked to see what
Category: Side effects

Replies: 2

Last updated: 19 October 2018
LabNoir on 18 October 2018

Category: Drug-drug interactions

Replies: 0

Last updated: 18 October 2018

Very high Eosinophil
by LabNoir (Oct 18)

Hi Everyone
Thanks David for letting me join.
Today is 6 month since I took Dasatinib and I went for a routine 6 month consultation but they found my Eosinophil have skyrocket to 2 (
Category: Drug-drug interactions

Replies: 1

Last updated: 18 October 2018
Nana Simone on 16 September 2018

Category: Side effects

Replies: 19

Last updated: 18 October 2018

CML & Depression
by EvaH (Oct 18)

Just to say that I agree meditation can help and if you are in the uk and resources are few, vipassana meditation offers donation based residential courses in meditation, although you must comit to

by Nana Simone (Sep 19)

Hi Dawn,
Thank you for your input, it’s reassuring to hear other people’s truth whether we have differences or not.
From what I gather it seems I need to find the right support, but it’s

by Nana Simone (Sep 19)

Yes it’s a crazy thought but who knows, I don’t know why it wouldn’t be valid, the way my therapist put it with panic attacks and CBT strongly resonated in my ears too! I carry that cross. Although

by Nana Simone (Sep 19)

Thank you for your insight, I sometimes feel so ungrateful for the little white pill that keeps me alive and sometimes I feel angry that I am depending on it for good health.
I will try to find the
Category: Side effects

Replies: 20

Last updated: 18 October 2018
Mona Gard on 10 October 2018

Category: Uncategorised

Replies: 6

Last updated: 18 October 2018

Nausea
by EvaH (Oct 18)

I second the advice about carb heavy meals, i also shifted away from taking imatanib at lunch time because occasional nausea interfered with my work day and so night time was less intrusive. I also

by Richard42 (Oct 17)

I had bad nausea when taking imatinib, until I worked out food timings to avoid it. I found a large ish meal with a good quantity of carbohydrates eg pasta, potato, rice (muesli and oats would also

by Mona Gard (Oct 10)

Yea I work 2nds so I take it at night too. I don't drink much water, I know I should.

by r06ue1 (Oct 10)

I take it at night, sleep through most of the side effects. Be sure to take it with food still in your stomach, taking it on empty is a sure fire way to throw up. Also be sure to take
Category: Uncategorised

Replies: 7

Last updated: 18 October 2018
r06ue1 on 9 May 2018

Category: Uncategorised

Replies: 7

Last updated: 17 October 2018

Generic drugs don't always push prices down
by Richard42 (Oct 17)

If it's private non commercial use, then in most countries importation into a patent protected area is not infringement. Regulatory issues may make personal importation more difficult, however...

by David Fitz (Oct 10)

I won't give the exact figure, but as I understand it the NHS has negotiated a supply of generic imatinib from a supplier that is at a very significant discount to the price quoted there. It's of

by Nimbus2 (Oct 9)

Presumably, buying a drug in an area where patent protection does not apply and shipping it to an area where patent protection does apply would infringe the area patent. Clearly, in any territory,

by Nimbus2 (Oct 9)

NICE in the UK indicates £1,946.67 for Novatis imatinib 400 mg, 30 tablets. Could be £23,684 a year without pharmacy cut.
The cheapest generics on the list are priced at £199.98 for the same.
Category: Uncategorised

Replies: 8

Last updated: 17 October 2018
FiremanRock on 17 October 2018

Category: Side effects

Replies: 1

Last updated: 17 October 2018

Sebopsoriasis
by sandy craine (Oct 17)

Hi Andy,
As if you needed yet another complication. If the supplements you were taking before your diagnosis were making a difference to your overall health then keep on with them. The old chestnut

by FiremanRock (Oct 17)

I presented to my GP on the 27th December 2017 and got confirmation on the 9th January this year. Imatinib, all good. However, I also have Vitiligo and unbeknownst to me the three way clash between
Category: Side effects

Replies: 2

Last updated: 17 October 2018
Naj on 12 October 2018

Category: Drug-food interactions

Replies: 6

Last updated: 17 October 2018

Tasigna and ibuprofen
by Naj (Oct 17)

Cmljax,
Thank you !!

by cmljax (Oct 14)

My oncologist told me the same thing as Sandy has told you - no ibuprofen, but ok to take acetaminophen/tylenol occasionally. Ditto also on the magnesium taurate.

by Naj (Oct 12)

Sandy,
Thank you !! I will do as you have suggested !!

by sandy craine (Oct 12)

Naj,
Best to take paracetamol rather than ibuprofen but only occasionally as TKis are also metabolised by the liver. To alleviate the muscle spasms/cramps you describe it may be a good idea to try a
Category: Drug-food interactions

Replies: 7

Last updated: 17 October 2018
Tbrand on 16 October 2018

Category: Blood tests

Replies: 1

Last updated: 16 October 2018

Best results
by RC Kirk (Oct 16)

Congratulations!

by Tbrand (Oct 16)

Diagnosed 1/2016, MMR 1/2017, .03 or so until last result from 07/2018 gotten today is .000 I feel great! Finally! On Imatinib.
Category: Blood tests

Replies: 2

Last updated: 16 October 2018
Nimbus2 on 15 October 2018

Category: Uncategorised

Replies: 6

Last updated: 16 October 2018

In the United Kingdom, does a CML diagnosis preclude a person from leaving his/her body for organ donation or for medical research?
by Nimbus2 (Oct 16)

Thank you, Nigel. I think, having read these postings, that organ donation is a virtual no-go (save for eyes) for those diagnosed with CML. I loosely used the term "medical research" in the

by nigel (Oct 15)

I actually made this enquiry some years ago, I’ll have a look if I still have the email. I was told that technically yes, we can still donate as the issue is in the blood, not the tissue, however

by Nimbus2 (Oct 15)

That is useful, David. Thank you. I will make enquiries at Birmingham. Perhaps, my body may be more useful now for research than for organ donation. I understand that the eyes may still be usable. I

by Nimbus2 (Oct 15)

Thank you, Alastair. The link is broken, but I managed to find the underlying article. Regards, Stephen
Category: Uncategorised

Replies: 7

Last updated: 16 October 2018
LouiseS on 13 October 2018

Category: Uncategorised

Replies: 5

Last updated: 15 October 2018

Good news one year in
by cmljax (Oct 15)

Go for 50 even if it means a few more PCR's

by kat73 (Oct 14)

Great news, Louise! Your husband is in a perfect position to ask this burning question of his onc at the next visit: "Do you think, now that I'm below MMR, that a further reduction down

by DawnD (Oct 14)

So very happy for you and your husband Louise. I will do my 3 mo PCR soon and hope I get good results too. Be well and again so happy for you both.

by onekayaker (Oct 13)

Congrats!!!! Always good to read posts like this
stephanie
Category: Uncategorised

Replies: 6

Last updated: 15 October 2018
Poppert on 14 September 2018

Category: Blood tests

Replies: 14

Last updated: 15 October 2018

Is it ”safe” to rely only on PCR test?
by RC Kirk (Oct 15)

Hi David,
It sounds like you're eager to get back to work. You had mentioned you would be able to return when you have achieved a cytogenetic remission. I was curious what criteria will

by David83 (Oct 14)

Alastair/Sandy,
I wasn’t sure if Nilotinib was the chosen TKI for reasons I wasn’t aware of, or if it was just traditionally the second one tried if Imatinib failed. I’ll be sure to have a good chat

by sandy craine (Oct 14)

Hi David,
I agree with Alastair's suggestion that dasatinib (or even bosutinib) may be a better option for you given your working schedules as a pilot and the need to strictly adhere to the fasting

by AlastairC (Oct 13)

Hi David, I'm not really qualified to talk about nilotinib as an alternative for you - I've been lucky that imatinib worked for me and I have not had to learn about the other TKIs. Have you shared
Category: Blood tests

Replies: 15

Last updated: 15 October 2018
jason77 on 30 September 2018

Category: Uncategorised

Replies: 13

Last updated: 14 October 2018

red cell distribution width (RDW
by scuba (Oct 14)

I had a similar result initially and now my hemoglobin is ~14 .... low normal range.
I raised my hemoglobin by taking "heme" based iron supplements along with a B-vitamin complex that has folate. I

by jason77 (Oct 14)

Hemoglobin was 11.2

by Nimbus2 (Oct 12)

I have bookmarked a very good UK explanatory table explaining the various blood tests in tabular form. It is from a website of our CLL "cousins" but still helpful. I have not seen a CML equivalent.

by LouiseS (Oct 11)

Hi Jason
i just had a look at my husband Paul’s results and at 5 months after ex his RDW was at his highest at 21 ( should be less than 16.4) Now at a year it’s in norm range again. He
Category: Uncategorised

Replies: 14

Last updated: 14 October 2018
Trang Phung on 14 October 2018

Category: Treating CML

Replies: 1

Last updated: 14 October 2018

Buy brand sprycel 50mg
by sandy craine (Oct 14)

Dear Trang,
Please contact the Max Foundation here - they can advise your mother where she can access TKI therapies in your country.
Sandy

by Trang Phung (Oct 14)

Dear,

Please tell me where I can buy brand Sprycel 50mg without take my mother to go abroad, I am at Viet Nam. I know it is a prescription medicine, but my mother can not go to abroad for some
Category: Treating CML

Replies: 2

Last updated: 14 October 2018
J. HY Wong on 14 October 2018

Category: Blood tests

Replies: 1

Last updated: 14 October 2018

Great results, but what next?
by sandy craine (Oct 14)

Josiah, congratulations on your optimal response to dasatinib (50mg) .... reducing further may be best kept for the future, when you are certain of the stability of your molecular response.

by J. HY Wong (Oct 14)

Three months in 50mg dasatinib, and the numbers are looking good!
19 June 23.3881%
21 July 9.5966%
07 September 0.4610%
Very excited, could be achieving MMR very soon. But my WBC counts remain low,
Category: Blood tests

Replies: 2

Last updated: 14 October 2018
sandy craine on 30 August 2018

Category: Uncategorised

Replies: 18

Last updated: 14 October 2018

UK Patient Seminar/meeting 22/09 Birmingham.
by cmljax (Oct 14)

Thanks very much David - I will email Prof Clark and see if he responds

by David Fitz (Oct 10)

I'd imagine the only way to get that information would be to email Richard Clark (DESTINY chief investigator) and ask.
https://www.liverpool.ac.uk/translational-medicine/staff/richard-clark/
David.

by Alaina (Oct 10)

Jax, if you are able to obtain this information, would you be so kind as to share it? I'm also interested in knowing if the amount of years on treatment before weaning to TFR requires full dose

by cmljax (Sep 27)

Thanks so much David. I'm still not sure I understand why this data would not be available. For each DESTINY participant, length of treatment prior to study and depth of response are
Category: Uncategorised

Replies: 19

Last updated: 14 October 2018