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Libby on 6 September 2018

Category: Uncategorised

Replies: 2

Last updated: 7 September 2018

Troubles with Dasatinib
by Libby (Sep 7)

I don't have a heart condition nor pleural effusion. It appears that the toxicity of Dasatinib has caused significant heart problems. My query is has anyone else had this and what

by cmljax (Sep 6)

Do you really have a heart condition or is the high blood pressure due to what sounds like a possible pleural effusion (not uncommon with Sprycel) or stress due to side effects. You need a complete

by Libby (Sep 6)

I've been on 100 dasatinib for 10 months and have just reached 0.124% - that is the good news.
The bad news is that i've had to stop taking Dastinib because 1) I got shortness of breath, 2) CT scan
Category: Uncategorised

Replies: 2

Last updated: 7 September 2018
gaby on 6 September 2018

Category: Uncategorised

Replies: 2

Last updated: 6 September 2018

My cml
by David Fitz (Sep 6)

Ruxolitinib is highly unusual for treating CML. There are some early stage combination studies, but there are no conclusive results.
I am sure your story is very interesting. Monotherapy with a

by RC Kirk (Sep 6)

Hi Gaby,
I've never heard of anyone taking Jakafi for CML. Do you have polycythemia vera or myelofibrosis with your CML? Or are you in a clinical trial?
Glad to hear that it's working for you

by gaby (Sep 6)

I was diagnosed with CML in February 2015. I am on Jakafi which has been working good for me. I started out with 5mg twice daily and about a year ago increased to 10 mg twice daily My main
Category: Uncategorised

Replies: 2

Last updated: 6 September 2018
LukeW on 4 September 2018

Category: Uncategorised

Replies: 6

Last updated: 6 September 2018

My slightly rocky CML road!
by onekayaker (Sep 6)

Good news indeed Luke!
Steff

by Isla D (Sep 6)

Great to hear that the Bosutinib is kicking in and working well. Really appreciate you posting your story!

by LukeW (Sep 4)

Glad to hear the site is helping you too. Hope you’re results come back with good news.

by DawnD (Sep 4)

Hi Luke, Thanks so much for sharing your story. I feel like we are all part of a little family. I am new here but this site is really helping me every day stay strong. Mornings are my worse time. As
Category: Uncategorised

Replies: 6

Last updated: 6 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
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
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
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