TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

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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
J. HY Wong on 31 August 2018

Category: Side effects

Replies: 5

Last updated: 3 September 2018

Chest pain (50 mg of Sprycel)
by J. HY Wong (Sep 3)

Just for an update!
The X-ray chest scan turned out very clean, so clean that my doctor gave me weird look for it. I have no idea what was going on, but I am sure 1. the pain sensation was real and

by J. HY Wong (Sep 1)

Thanks scuba, Ian and Kirk for all the information!
I am also suspecting PE, but just worried because the symptoms was a bit off from an usual PE (mainly about feeling strong heart beats). Its

by RC Kirk (Sep 1)

Hi Josiah,
If you haven't seen this post from earlier this year, check it out.
https://www.cmlsupport.org.uk/thread/12264/pressure-chest-when-standing

by ipmaki (Aug 31)

Hi Josiah,
What you describe is something I also experienced when I started taking Sprycel. I had several tests done including a CT scan and an ultrasound, but there was nothing discovered to
Category: Side effects

Replies: 5

Last updated: 3 September 2018
DawnD on 14 August 2018

Category: Blood tests

Replies: 50

Last updated: 3 September 2018

WBC level at diagnoses
by Chuckster (Sep 3)

Great Story!
Thank You Dennis!!

by Dennis (Sep 3)

Well that’s great DawnD.
if it helps others, that’s all I want.

by DawnD (Sep 3)

Amazing story of survival!!!!! Inspirational for a newbie like me!

by Chuckster (Sep 3)

Feb 12 2018- The day I was told by my Oncologist all tests verified I had CML: 19,800.
From March 2018 to Aug 22nd- latest blood test- decreased from 19.800 to 7,800. ( From 100mg then
Category: Blood tests

Replies: 50

Last updated: 3 September 2018
trusamandfive on 30 August 2018

Category: Blood tests

Replies: 16

Last updated: 3 September 2018

Six week PCR result
by sandy craine (Sep 3)

FISH/cytogenetics; Qualitative PCR; Quantitative PCR etc... is confusing for all of us but especially when newly diagnosed. I think you may find our downloadable Q-PCR booklet helpful.
Q-PCR Primer

by cmljax (Sep 3)

I think I love Romo too, but cannot agree with continuing a dishonest relationship with your oncologist. If he/she isn't up to date on the latest with respect to dose titration of TKI's, it is

by DawnD (Sep 1)

Love it!!

by trusamandfive (Sep 1)

Hahahaha Romo I think I love you, this made me laugh. Im glad your letting your Oncologist hold onto his genius dream. Mine looked concerned the other day when I had so much to say about
Category: Blood tests

Replies: 16

Last updated: 3 September 2018
gillianmays on 24 August 2018

Category: Side effects

Replies: 13

Last updated: 2 September 2018

What reason would there be to be withdrawn from treatment due to being unwell and a rash?
by AlastairC (Sep 2)

Hi Gillian, just a quick thought on the question of dissolving imatinib tablets. There has been some discussion on here in the past about dissolving imatinib in apple juice - might be worth a try?

by gillianmays (Sep 2)

Thank you for replying to me. After reading some of the responses, I feel that maybe I haven't allowed Imatinib to be given a chance? After being advised that I will get 'some' side effects, I just

by AlastairC (Aug 28)

Gillian, can you let us know where your are seeing your consultant, and any other test results. It sounds to me like you need to be seen at a centre of excellence for CML, and that may not be case

by onekayaker (Aug 27)

Kat is exactly right. Said what I was fumbling to say in earlier post. I am Very lucky to be in Houston with a doctor at MD Anderson Center. Weekly blood draws
Category: Side effects

Replies: 13

Last updated: 2 September 2018
Tanya Cuffe on 31 August 2018

Category: Uncategorised

Replies: 3

Last updated: 1 September 2018

Dropping Glivec already...
by trusamandfive (Sep 1)

Hi Tanya,
Sorry to hear your having such a hard time. Are you seeing someone to manage your mental health? I know a lot of people struggle after diagnosis whether its the diagnosis or

by scuba (Aug 31)

Change drugs.

by AlastairC (Aug 31)

Hi Tania, sorry to hear Glivec is causing you these side effects. I think the folks on here need a little more information to help. Please can you tell us:
How is your CML doing? Do have FISH or BCR

by Tanya Cuffe (Aug 31)

Hi My name is Tanya I live in Australia and have taken 400 mg glivec for 8 months now dropped to 300 mg and I want keep dropping it as my mental health has been impaired badly by this drug as well
Category: Uncategorised

Replies: 3

Last updated: 1 September 2018
alexmcpee on 31 August 2018

Category: Children & young people

Replies: 5

Last updated: 1 September 2018

Hope for newly diagnosed CML
by trusamandfive (Sep 1)

That's brilliant Alex, exactly where you want to be at 3 months, what a great feeling!
I'm about six weeks behind you in treatment and heading down quickly too. We are so lucky with the

by alexmcpee (Aug 31)

Thank you Dawn not long ago I was yourself just starting the process. I absolutely believe the mind plays a massive part in your body and especially fighting a disease. You too will be fine I

by DawnD (Aug 31)

So happy for you Alex and you are an inspiration for us early birds!! Gonna try that book. The mind is so important in fighting dis- ease. Have a great weekend! Dawn

by alexmcpee (Aug 31)

Thank you Jason I am defo on a high today ;-) what a rollercoaster hey!
Category: Children & young people

Replies: 5

Last updated: 1 September 2018
DawnD on 30 August 2018

Category: Uncategorised

Replies: 2

Last updated: 31 August 2018

Frequency of labs needed
by DawnD (Aug 31)

Thank you David. I think I am on overload :)

by David Fitz (Aug 30)

Hi Dawn,
European LeukemiaNet recommend RQ-PCR every 3 months until MMR has been achieved, then every 3 to 6 months. The "first year" is not relevant to the testing schedule in these guidelines.

by DawnD (Aug 30)

I read so much conflicting information on how often the labs need to be performed in the first year. Can someone give me a guideline so I can speak to my hemo next week. Thanks in advance, Dawn
Category: Uncategorised

Replies: 2

Last updated: 31 August 2018
vholly on 29 August 2018

Category: Side effects

Replies: 3

Last updated: 29 August 2018

Sprycel & bruise-like pain
by vholly (Aug 29)

Thanks Gitel & Alex. Happen to have an appointment with haematologist tomorrow so hopefully I’ll get clarity on what’s going on.
Take care,
Victoria.

by Gitel (Aug 29)

You might want to check with your Onc, reporting the cough and the chest pain. Better to check than worry.

by alexmcpee (Aug 29)

Hi Victoria,
Not on Sprycel I am on Nilotinib but did got lots of aches and pains in various places when I first started. I still get the odd twinge now and again but it’s minor. What side is the

by vholly (Aug 29)

Hi all,
I'm in week 2 of Sprycel, having moved from Imatinib due to sub-optimal response. I'm experiencing the same fatigue & I'm hoping that this fades over time. However, I'm also
Category: Side effects

Replies: 3

Last updated: 29 August 2018
Justine on 3 August 2018

Category: Blood tests

Replies: 27

Last updated: 29 August 2018

Amazing PCR result
by kat73 (Aug 29)

Can't wait to hear what he says, Justine! November will be here before you know it. Do give us a full report.

by Justine (Aug 29)

Appointment with Dr. Druker scheduled for early November. The scheduler said he sets aside two hours for a new patient visit. Two hours, imagine! Will let you know how it goes. As I've indicated

by Gitel (Aug 11)

Of course it makes more sense to have the BCR ABL available when one sees the Onc at the three month visits. That’s how I learned I was Imatinib resistant and needed To be checked for

by kat73 (Aug 10)

Yes, Gitel, I have indeed spoken up! I went up the chain of command to the top of IT. They assured me that everyone in the higher administration was aware of the problem and trying to
Category: Blood tests

Replies: 27

Last updated: 29 August 2018
Chuckster on 28 August 2018

Category: Blood tests

Replies: 8

Last updated: 29 August 2018

Lastest Blood Test Results: On 50MG of Sprycel Daily.
by Chuckster (Aug 29)

Hi!
Check with the lab that is drawing your blood/and testing.
Depending on what tests your Doctors/ Oncologist is ordering, you should request and receive a copy of ALL of your blood work/

by Felix (Aug 29)

Hi Chuckster ,great news on all your zeros well done. Everybody seems to get so much information about their blood results FISH ,PCR ,and every other abbreviation connected to CML .When I get

by LouiseS (Aug 29)

Great news Chuck ! Hope you are felling pretty much back to normal now :)
louise

by Chuckster (Aug 29)

Thank you very much to all!
*Re Vit B supplement +Iron etc. I will be seeing my oncologist today
I will ask about it as I already take a Multi Vitamin Suppl but it has no IRON in it.
Category: Blood tests

Replies: 8

Last updated: 29 August 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
Karinne on 11 January 2018

Category: Side effects

Replies: 8

Last updated: 28 August 2018

Pleural Effusion on Sprycel
by David Fitz (Aug 28)

That sounds like a really good outcome. Thanks for following up and letting us know how it went. It's so helpful for other patients to read stories with the follow-up details too!
David

by kat73 (Aug 28)

Karinne - For what it's worth, the powers that be are letting me walk around with a very small residual PE (on 20 mg Sprycel) and don't seem worried about it for the future. I can check in

by Karinne (Aug 28)

I wanted to give you all, an update on what happened after my PE. I took a drug vacation for 2 months and during this time my pcr was still below 0.0032%IS. I resumed Sprycel at 50 mg at the

by scuba (Jun 8)

Hi Tom,
The joint pain is related to your stopping Tasigna. It is a withdrawal symptom and will fade in time. It could take several months for that to occur.
Also - keep an eye on your thyroid as
Category: Side effects

Replies: 8

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
Nimbus2 on 22 July 2018

Category: Food & fitness

Replies: 11

Last updated: 28 August 2018

CML >>> physical fitness
by Nimbus2 (Aug 28)

That is very interesting, Rick, because your observations are consistent with my own. You sound like a great swimmer. For my part, I was just about able to achieve 2,500 metres in an hour a year ago

by Rick B (Aug 28)

I swam in college and competed on the national level; thus, swimming has always been my prime exercise. In the months before being diagnosed with CML, I began to find it harder and

by Nimbus2 (Aug 28)

Hello, and thank you for your response.
I take Imatinib 40 in a couple of hour's time, so you are ahead of me.
I swim with a sophisticated watch which records all sorts of clever things such as time

by trusamandfive (Aug 28)

We must be pretty close in our start dates for TKI's, today is day 41 for me.
One of my symptoms was a decline in exercise ability which I blamed on age, to be honest when I found out I had CML I
Category: Food & fitness

Replies: 11

Last updated: 28 August 2018
trusamandfive on 25 August 2018

Category: Uncategorised

Replies: 4

Last updated: 28 August 2018

Hi everyone....
by trusamandfive (Aug 28)

Nope I'm still not convinced, I'll avoid all drills coming near me for as long as possible

by Nimbus2 (Aug 27)

At my bone biopsy, they deployed the "electric drill":
https://www.teleflex.com/usa/product-areas/interventional/bone-access/ar...
The manufacturers claim the following amongst other benefits

by trusamandfive (Aug 27)

Hahahaha three times - I think your ONC is a bit sadistic. I was pretty happy about no big needles. I think that with the blood works now they get enough information that they need to

by RC Kirk (Aug 27)

Welcome to the CML club. How come they didn't stick the big needle in your hip? Is this a new way of diagnosing CML? I want a do over, my onc stuck that big needle in me three
Category: Uncategorised

Replies: 4

Last updated: 28 August 2018
Rosiem on 26 August 2018

Category: Uncategorised

Replies: 0

Last updated: 26 August 2018

Side effects
by Rosiem (Aug 26)

Sprycel GCSF and Cholesterol
I was on 20 mg of Sprycel but only two months out of three as my neutrophil counts would drop too low. My consultant has put me on gcsf injections weekly (granulocytic
Category: Uncategorised

Replies: 0

Last updated: 26 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
Romo on 18 August 2018

Category: Uncategorised

Replies: 6

Last updated: 24 August 2018

Any Good Stories.
by r06ue1 (Aug 24)

Aren't we ALL a good story? Since the discovery of these amazing medications, we now have a chance, before these medicines... well, you know.

Embrace every day as if it were

by MJP (Aug 24)

Decided to get intraocular implants so i wouldn’t have to wear glasses anymore. Eye surgeon required my general practitioner to sign that I was healthy enough for the procedure (

by Romo (Aug 24)

I guess there are only a few good stories.
It’s not easy being CML.
Romo

by Tbrand (Aug 18)

Almost 3 years ago, I went to my Doctor for a swollen knee issue, blood test and then told probably leukemia. Told the Onc that there is a relationship with my knee and CML. He laughed, but when the
Category: Uncategorised

Replies: 6

Last updated: 24 August 2018