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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
RC Kirk on 9 October 2018

Category: Treating CML

Replies: 1

Last updated: 9 October 2018

Interview with Dr. Ehab Atallah - discontinuation of treatment for patients with CML
by Rebecca Bonnell (Oct 9)

The Emphasis being on: " and reduce cost." !!!

by RC Kirk (Oct 9)

Treatment-Free Remission Feasible in Select Patients With CML
Angelica Welch
Published Online:4:14 PM, Fri October 5, 2018

Due to significant advancements in the treatment landscape of
Category: Treating CML

Replies: 1

Last updated: 9 October 2018
Nimbus2 on 7 October 2018

Category: Uncategorised

Replies: 6

Last updated: 8 October 2018

Low lymphocyte count
by Nimbus2 (Oct 8)

Thank you, Justine, all of this reassurance is helpful. Regards, Stephen

by Justine (Oct 8)

My lymphocyte % was low at diagnosis and for the first three months on imatinib, but went into normal range and has stayed normal since. It may be normalizing for you soon.

by Nimbus2 (Oct 8)

I appreciate your responding, Jason. I have quite a regular complete blood count record from 2011 onwards related to various other complaints and investigations. I notice that my lymphocyte

by Nimbus2 (Oct 8)

Thank you, Scuba, for preparing such a plausible explanation. There appears to be a rebalancing exercise taking place within the blood system and it is helpful that you too noticed an impact
Category: Uncategorised

Replies: 6

Last updated: 8 October 2018
Toml on 9 August 2018

Category: Treating CML

Replies: 10

Last updated: 7 October 2018

Help!! PAH and Sprycel onc recommends switch to tasigna
by chigi (Oct 7)

Hi Toml - how are you coming along on Tasigna? Any improvements with PAH? Any fluid retention issues ?
i seem to be in a similar situation. Was on Dasatinib for 5 years. Switched to Bosutinib 6-8

by Toml (Aug 15)

Thanks Sandy. I just started the tasigna but will speak to onc re Bostunib. That sounds like a good option for me since I have had PAH. Perhaps my “plan B” if tasigna doesn’t do

by sandy craine (Aug 14)

Bostunib (Bosulif) may be an answer for you. You could ask your oncologist. UK CML clinicians- amongst others - are positive about this TKI as a good alternative to nilotinib/dasatinib/ponatiib re:

by alison (Aug 12)

You may want to discuss lower starting dose or reducing once your numbers are good enough.
Category: Treating CML

Replies: 10

Last updated: 7 October 2018
Alaina on 5 October 2018

Category: Uncategorised

Replies: 10

Last updated: 6 October 2018

Inquiry about Tasigna reduction
by Alaina (Oct 6)

Thank you for these articles. I saved them to my phone so that I can share them with my doctor. You have been an excellent resource.

by cmljax (Oct 6)

I don't know about my doctor but I have heard that more and more oncologists who treat CML are beginning to recognize that TKI treatment is about fining the least amount of dose that will acceptably

by Alaina (Oct 5)

Has your experience and excellent response encouraged your doctor to attempt dose reduction for other patients as well?

by cmljax (Oct 5)

43%. By the way, there is virtually no risk to try a dose reduction given your current PCR level. If your PCR starts to rise, you just go back to full dose again. Testing frequency
Category: Uncategorised

Replies: 10

Last updated: 6 October 2018
Romo on 5 September 2018

Category: Uncategorised

Replies: 3

Last updated: 6 October 2018

The Dream Clinic.
by RC Kirk (Oct 6)

I had a dream that Romo returned to us when I was going through posts and saw that he had posted this on the 5th, which happens to be today. Then the dream turned to the nightmare when I saw

by Isla D (Sep 6)

Hang in there Thomas. There are a few people on the US site attempting cessation after a few years of 100mg/80mg Sprycel. If you can tough it out it might be worth it. The side effects were too hard

by ThomasS (Sep 5)

I've been having crazy bizarre dreams ever since I started on 100mg Sprycel several years ago. I keep telling my Dr about it trying to get her to drop to 50 mg to see if the vivid dreaming will stop

by Romo (Sep 5)

I was sleeping last night and had a a dream.
I dreamed that my clothes dryer was on fire.
In my dream my clothes dryer was in a narrow closet
that I had to enter with my fire extinguisher
Category: Uncategorised

Replies: 3

Last updated: 6 October 2018
Jason Graves on 6 October 2018

Category: Uncategorised

Replies: 1

Last updated: 6 October 2018

Finally home
by RC Kirk (Oct 6)

Jason, it's good to hear things are settling down. I think your family has had enough matrimonial and medical adventures for this year!
Everyone is different, but some CML patients aren't good

by Jason Graves (Oct 6)

It seems we are on the right path now. My wife cml is being managed from home. She is on glevec with some side effects in the beginning but those are starting to fade. This has been a scary
Category: Uncategorised

Replies: 1

Last updated: 6 October 2018