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MartinZA on 12 November 2018

Category: Treating CML

Replies: 2

Last updated: 15 November 2018

Likelihood of adverse events
by MartinZA (Nov 15)

Hi Alastair
Thank you so much for the response - I agree that you are lucky in the UK to have the NHS! (Thanks also for your presentation on the Patient Day - I watched it live here in

by AlastairC (Nov 12)

Hi Martin, a couple of questions. How long have you been in MMR - was losing MMR one of the reasons for your change? Apologies if you have written about that and I've forgotten. Also what dose of

by MartinZA (Nov 12)

Hi everyone
This is a bit of a strange question, and I'm not sure if I should even ask, but any advice would be helpful.
I live in South Africa and am on a private medical aid scheme that has
Category: Treating CML

Replies: 2

Last updated: 15 November 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
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
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
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
Poppert on 1 October 2018

Category: Treating CML

Replies: 0

Last updated: 1 October 2018

Nobel prize
by Poppert (Oct 1)

Apparently this year’s nobel prize in medicine goes to James P. Allison and Tasuku Honjo for their work on finding a way to ”unleash” the body’s immune system to attack cancer.
It
Category: Treating CML

Replies: 0

Last updated: 1 October 2018
chloe870 on 28 September 2018

Category: Treating CML

Replies: 0

Last updated: 28 September 2018

Bring Awareness to Blood Cancer
by chloe870 (Sep 28)

Hi everyone, I have recently been diagnosed with CML and was in complete shock for the first few weeks. I never knew much about blood cancer or the signs/symptoms. When I was waiting for my
Category: Treating CML

Replies: 0

Last updated: 28 September 2018
ramesh kadaru on 27 September 2018

Category: Treating CML

Replies: 1

Last updated: 27 September 2018

BCR-ABL1IS-QUANTITATIVE TEST RESULT
by sandy craine (Sep 27)

Hi Ramesh,
I have some questions:
Given your father has had CML for 25years, can I ask how he has been treated before he was given imatinib (6 months back)?
I assume the PCR test result you quote as

by ramesh kadaru (Sep 27)

Hi My Dad was diagnosed CML 25 years back, he is now 73 years old. He was using Imatinib 6 months back and during the BCR-ABL1IS-QUANTITATIVE TEST RESULT BCR-ABL1 IS -NCN
Category: Treating CML

Replies: 1

Last updated: 27 September 2018
jriccoboni on 26 September 2018

Category: Treating CML

Replies: 7

Last updated: 27 September 2018

PCR test after 1 month of treatment
by sandy craine (Sep 27)

Give yourself and your body some time. You only started therapy 4 months ago and looks like your response is good, so you can at least comfort yourself with the knowledge that you have responsive

by J. HY Wong (Sep 27)

50mg, I have started on 100mg, but because of the immunosuppression my doctor authorized me with 50mg -- and I keep taking 50 to this date. I have been keeping up the exercises, but still not

by scuba (Sep 27)

What dose are you on currently?

by J. HY Wong (Sep 27)

I started four months ago and I got 6% after two months, I think you are in great shape. But even sprycel 50mg is still causing fatigue, I wonder if 20mg could work.
Category: Treating CML

Replies: 7

Last updated: 27 September 2018
autadesiddharth on 21 September 2018

Category: Treating CML

Replies: 1

Last updated: 26 September 2018

Managing thrombocytopenia
by David Fitz (Sep 26)

Hi there,
I’m really sorry nobody has been able to give you any good answers. Food and blood counts are really not that related. We’d all like to earn some special food to boost our blood

by autadesiddharth (Sep 21)

My mother has been in the Blast Crisis for 6 months now. She was currently taking 50mg Dasatinib on an alternate day after few rounds of chemotherapy failed to get her into remission.
She has also
Category: Treating CML

Replies: 1

Last updated: 26 September 2018
autadesiddharth on 12 September 2018

Category: Treating CML

Replies: 3

Last updated: 21 September 2018

Questions about blast crisis in CML
by Poppert (Sep 21)

I’ve sufflerad from low thrombocytes, but in chronical phase. Paus and start again was the protocol then. Beeing able to keep on medication longer and longer sounds like good news. I hope it

by autadesiddharth (Sep 21)

Thank you for your response. I'll follow up on the VitD levels and check with the Doctor.
She has also started experiencing low platelet counts and they dont seem to increase. We are taking 2

by scuba (Sep 12)

On again - off again pulsing of Dasatinib is a standard protocol for dealing with myelosuppression (neutropenia, etc.). Her doctors don't want to give her neupogen ("stimulation" shots) in order to

by autadesiddharth (Sep 12)

Hi,
My mother(52y) was diagnosed with CML in March 17 and was started on imatinib immediately. After 8 months on imatinib she started experiencing evening fevers and chill and body aches. Bone
Category: Treating CML

Replies: 3

Last updated: 21 September 2018
Felix on 10 September 2018

Category: Treating CML

Replies: 7

Last updated: 11 September 2018

What colour is your Imatinib tablet?
by Felix (Sep 11)

Oo don’t like the sound of eye bleeds ,don’t want them !!

by chrissie (Sep 11)

Yes good old generics! I am now on the 4th kind and am wondering what hey will send me next month. I take 300mgs so I have to take 3x100tablets at a time. Intrapharm (white) and Wockhardt (brown)

by sandy craine (Sep 11)

It may be helpful to read our booklet on generic imatinib, you can download it via the homepage. As Alastair has said, for those in the UK, the MHRA has to give a license to any brand of

by Felix (Sep 11)

Thank you Alastair ,you are so knowledgeable on all aspects of CML ,great for us newbies to read .Hope you are keeping well on your lowered dosage . Regards ,Denise.
Category: Treating CML

Replies: 7

Last updated: 11 September 2018
Aamir Gauri on 6 September 2018

Category: Treating CML

Replies: 2

Last updated: 7 September 2018

CML VARAINT TRANSLOCATION t(4;9;22)(p16;q34;q11) BCR-ABL NEGATIVE . IMATINIB AND DASATANIB RESISTANT. PLS AVDICE WHAT TO DO
by r06ue1 (Sep 7)

"BCR/ABL negative or atypical chronic myeloid leukemia (CML) is a rare hematologic malignancy with an estimated incidence of 1–2% of BCR/ABL positive CML. Clinical features of BCR/ABL negative CML

by David Fitz (Sep 6)

Hi Aamir,
You've posted a lot of information, but not much questions. Is there something particular you're worried about or want to talk about?
It is very normal to take hydroxycarbamide for a while

by Aamir Gauri (Sep 6)

DAIGNOSIS: CML
DAIGNOSIS ON 24/05/2018 DUE TO HIGH TLC.
DATE: 24/05/2018 TCL: 147500/CUB.MM
HYDROXYUREA START FROM 25/05/
Category: Treating CML

Replies: 2

Last updated: 7 September 2018
MartinZA on 3 September 2018

Category: Treating CML

Replies: 5

Last updated: 6 September 2018

How to get a haematologist to listen?
by MartinZA (Sep 6)

Hi everyone
Thank you so much to you all for your detailed responses to my question. You have all answered so openly and sincerely, and this has given me so much food for thought. I will

by scuba (Sep 4)

Martin -
1. You are in command of your body - not your doctor.
2. You know most about how you feel - not your doctor.
3. You are surrounded by people (on this forum) who share your disease -

by Romo (Sep 3)

Every few months when I go into my Cancer Clinic
to see my Onc and review my latest PCR results
I sit in the lobby and wait for my name to be called.
It’s a small clinic with 3 DRs and a

by sandy craine (Sep 3)

Hi Martin,
I am sorry to hear you are having a hard time trying to get your doctor to listen. When I was first (officially) diagnosed back in Jan 1999 I was very fortunate to be under the care of
Category: Treating CML

Replies: 5

Last updated: 6 September 2018
Tidal-Life on 5 September 2018

Category: Treating CML

Replies: 1

Last updated: 5 September 2018

Anyone on or been on the Asciminib aka ABL001 Trial?
by LukeW (Sep 5)

Why are you on the trial if you don’t mind me asking? What results exactly did your other TKIs bring? I ask only because I’m in my third TKI in 2 years, so knowing new trials on new drugs are being

by Tidal-Life (Sep 5)

Hi everyone!

Is anyone in here who has been, or is currently signing up for the Asciminib aka ABL001 Trial?
I started the Trial Medication recently and right now I'm curious about blood count
Category: Treating CML

Replies: 1

Last updated: 5 September 2018
Felix on 1 September 2018

Category: Treating CML

Replies: 6

Last updated: 4 September 2018

What’s this new drug?
by r06ue1 (Sep 4)

There is at least a few which should be making it into early trials this year or next. One such example comes from Universities of Glasgow and Manchester:

https://www.

by AndrewRego (Sep 4)

I know they’re currently recruiting for a phase 3 trial in the UK
https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-st...

by Poppert (Sep 3)

What’s the status of ABL001? Has it been tested on humans yet?

by Romo (Sep 2)

There is no end in the parade of new drugs
..that cure diseases.
Especially incurable diseases.
Sometimes researchers in medicine develop
a therapy that gives life to those previously doomed.
Category: Treating CML

Replies: 6

Last updated: 4 September 2018
mrowleym on 28 August 2018

Category: Treating CML

Replies: 1

Last updated: 28 August 2018

What is a Rudga 21 score?
by David Fitz (Aug 28)

Short for Rutgeerts Score, perhaps? It's a Chron's thing, not CML. That's what my quick Google turned up anyway.
David

by mrowleym (Aug 28)

Hi all
On behalf of my mum does anyone know what this is? She has a hospital letter that mentions this but I can't find out what it means and she has CML and Crohns Disease. Thank you - hope
Category: Treating CML

Replies: 1

Last updated: 28 August 2018
trusamandfive on 28 August 2018

Category: Treating CML

Replies: 6

Last updated: 28 August 2018

Dasatinib/Sprycel dosage help please
by LouiseS (Aug 28)

Thanks Scuba . He is taking curcumin and Vit D ...and Quercitin and Vit K2 :) Fingers crossed he will be able to try and reduce again soon.
Louise

by scuba (Aug 28)

Hi Louise - He might try adding Curcumin to his diet and making sure his vitamin D level is in the 50-70 ng/ml range. This may help his Sprycel work more effectively (on lower dose) by helping

by trusamandfive (Aug 28)

It's hard isn't it, I would generally go along with what Drs tell me, but the last month has proved that with something like this unless you are dealing with a Dr who has a lot of experience you do

by trusamandfive (Aug 28)

Thank you so much for that information, it makes perfect sense and I was thinking today as I had the injection, great lets throw out more white cells good and bad, then six hours later taking
Category: Treating CML

Replies: 6

Last updated: 28 August 2018
r06ue1 on 20 August 2018

Category: Treating CML

Replies: 5

Last updated: 24 August 2018

Bride D‌ie‌s of C‌an‌ce‌r Moments Before Her Wedding in the Hospital
by Romo (Aug 24)

If they shipped the order on a flying carpet, I would order the
goods, throw the order in the trash, put my wiener dog on the
flying carpet, and watch the carpet take to the skies.
All the

by Tbrand (Aug 24)

Sure, and promised shipment on a flying carpet.

by Romo (Aug 23)

I also know that Quality Dasatnib was manufactured in India.
https://timesofindia.indiatimes.com/city/mumbai/Interesting-turn-in-Dasa...

And later denied:
https://economictimes.indiatimes.com/

by r06ue1 (Aug 21)

It is true there are a lot of fake, brand name labels in China but isn't that free market economics without restriction?

There was a movie in China that went viral just recently
Category: Treating CML

Replies: 5

Last updated: 24 August 2018
Clarek on 30 July 2018

Category: Treating CML

Replies: 5

Last updated: 14 August 2018

BCR results
by David Fitz (Aug 14)

Hi Clare,
One set of targets which is often discussed as a good indicator is reaching 10% by 3 months. Then 1% at 6 months, and 0.1% by 12 months. These would be considered "optimal" responses

by ColoradoGuy (Aug 14)

I would say as long as you are trending in the right direction you are still good. Mine looked like the following:
64%, 23% (6 months), 1.8% (9 months), 12 month at the end of this month.

by Clarek (Aug 14)

Hi,
I asked about my PCR tests and apparently I've had 3. The results of the 1st one in February was 82%, then May was 22% and this months went down to 2.4%, and I still don't know if this is ok.

by David Fitz (Jul 30)

Hi Clare,
It's common not to have a PCR test (which tests for the existence of BCR-Abl, the fusion protein that drives CML) until 3 months after diagnosis. However, that means you ought to
Category: Treating CML

Replies: 5

Last updated: 14 August 2018