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dadbags on 23 October 2018

Category: Uncategorised

Replies: 3

Last updated: 26 October 2018

gleevac free 6mo
by cmljax (Oct 26)

Way to go - happy for you. Like Kat, I would like to know your PCR history for at least the last 3 years prior to stopping. Also, the protocol for PCR testing is every month for at least

by chrissie (Oct 26)

Brilliant news. Congratulations. I won't mention grapefruit!
best
Chrissie

by kat73 (Oct 23)

This is great! What encouraging news. Were you and are you at PCRU? Just curious. I think you must have the record on this forum - 17 years! Holy Cow. Congrats.

by dadbags (Oct 23)

hi everyone-well here i am 6mo no gleevac-all blood counts normal-liver,kidneys,bp,etc all normal-well its been over 17years since july3,2001-blood counts normal since 2003-still giving me blood
Category: Uncategorised

Replies: 3

Last updated: 26 October 2018
Felix on 18 October 2018

Category: Side effects

Replies: 3

Last updated: 24 October 2018

Mouth problems on Imatinib
by David Fitz (Oct 24)

Family dentists, as opposed to hospital dental surgeons, of course don't see as much of the medical spectrum just by virtue of who presents. They're being cautious, which is the right thing.
The

by Felix (Oct 20)

Hi David ,thank you so much for your reply.It is as your sister says between my upper and lower teeth .My dentist has never treated anyone with CML before so I am really hoping she is being over

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: 3

Last updated: 24 October 2018
LabNoir on 18 October 2018

Category: Drug-drug interactions

Replies: 1

Last updated: 22 October 2018

Very high Eosinophil
by RC Kirk (Oct 22)

Hi Vince,
Sorry, I don't know anything about eosinophils. I was just curious about the venetoclax. Are you in a trial study? You had mentioned in another post that your doc wasn't

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: 22 October 2018
derren on 15 July 2008

Category: Uncategorised

Replies: 14

Last updated: 21 October 2018

Travel Insurance Good news
by David Fitz (Oct 21)

Perhaps this one?
https://www.cmlsupport.org.uk/section/travelling-cml

by DKurup (Oct 21)

Hi Sandy,
This link is not working anymore, and has possibly moved.
http://www.cmlsupport.org.uk/faq_travelfaq
Could you pls update with the latest link ?
Thank you,
K

by sandy craine (Aug 8)

Hi Richard..... have you or others tried any of the companies from the recently updated list on our Travel FAQ and if so do you have feedback? I try to keep the companies on the travel FAQ list

by Richard (Aug 7)

Hi Derren
This is Medici Travel again.
They will not cover me for CML, even though I have been in complete remission, on Glivec, for 7 years. They also declined to cover me for IHD, MI and angina,
Category: Uncategorised

Replies: 14

Last updated: 21 October 2018
devenavani on 25 September 2018

Category: Uncategorised

Replies: 25

Last updated: 20 October 2018

Running out of options
by RC Kirk (Oct 20)

Thanks David,
I put "Early Results of Lower Dose Dasatinib (50 mg Daily) as Frontline Therapy for Newly Diagnosed Chronic-Phase Chronic Myeloid Leukemia" and it returned the original article

by David Fitz (Oct 19)

Is it really counterintuitive that a lower dose leads to a better response?

We are basically interested in a sort of homeostasis. If we have a bacterial infection, we take antibiotics.

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
Category: Uncategorised

Replies: 25

Last updated: 20 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: 6

Last updated: 19 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: 7

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: 1

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: 6

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: 1

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: 5

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: 14

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: 13

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: 1

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: 1

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: 18

Last updated: 14 October 2018
Felix on 8 October 2018

Category: Uncategorised

Replies: 4

Last updated: 13 October 2018

Alastair,can you recommend please.
by AlastairC (Oct 13)

Thanks Sandy
Denise I have just sent you an e-mail - hope that's of use.
Alastair

by sandy craine (Oct 13)

Alastair and Denise,
I will put you in touch by email.
Denise, it is not acceptable that your heamatologist does not know what a PCR test is! You can request a referral to another centre that

by Felix (Oct 10)

Thank you Alastair ,I have just sent an email ,Denise.

by AlastairC (Oct 10)

Hi Denise sorry I haven't been around for a few days. In terms of the PCR question, PCR is the analytical method by which the BCR-ABL results are determined. There is booklet which explains how it
Category: Uncategorised

Replies: 4

Last updated: 13 October 2018
HKBails on 11 October 2018

Category: Treating CML

Replies: 8

Last updated: 12 October 2018

Recently diagnosed with cml
by HKBails (Oct 12)

Thank you all so much I feel much more reassured. I want to enjoy the wedding and have so much to do before then. Hopefully speaking to the consultant Wednesday so I’ll know the plan then, thanks

by kat73 (Oct 12)

HKBails - You are absolutely safe to not start imatinib until after the wedding. The doctors would not have let you do so if you were in danger. I am assuming therefore that you are in

by sandy craine (Oct 12)

Hi and welcome,
It's not a great time for you to have this diagnosis- but then it never is a great time. I was diagnosed just before Xmas 1998 (pre-imatinib era) but managed to get through to the

by chrissie (Oct 12)

Welcome to the group of special people! This is the best place to come for good information about CML. We all remember the roller coaster and shock of diagnosis - you are not alone. I have been
Category: Treating CML

Replies: 8

Last updated: 12 October 2018
pc on 8 October 2018

Category: Side effects

Replies: 1

Last updated: 10 October 2018

developed varicose veins as a side effect of imatnib
by David Fitz (Oct 10)

Hi there,
Over the years, people have reported varicose veins as an issue with imatinib, so there's a chance it could be related but of course also a chance it's to do with something else. Gender,

by pc (Oct 8)

I was diagnosed with CML in feb 2018.I was put on imatnib since beginning of march 18.. After 6 months on imatnib,my both limbs starts paining heavily and developed rashes. My hematologist told me
Category: Side effects

Replies: 1

Last updated: 10 October 2018
jab on 8 October 2018

Category: About CML

Replies: 1

Last updated: 9 October 2018

Pleural Effusion, Chemo Holiday! How long has everyone been taken off Sprycel for Pleural Effusion
by kat73 (Oct 9)

Ideal is to stay off Sprycel until pleural effusion is 100% gone. Longest I was able to stay off was 11 weeks; still had very minimal but present fluid. PCR had gone from <0.01% IS to

by jab (Oct 8)

I was wondering how long everyone who had pleural effusion resulting from medication where taken off of Sprycel.? I was on 100mg 1 time per day since 2011. I got almost every side effect but
Category: About CML

Replies: 1

Last updated: 9 October 2018