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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onekayaker on 28 February 2019

Category: Uncategorised

Replies: 3

Last updated: 28 February 2019

Results on bone marrow 3 months on Bosulif 300mg
by onekayaker (Feb 28)

Thanks guys! I will look at that link Ala. She did explain that each step takes longer because you are lowering such a small number, then even smaller and so on.

Steff

by scuba (Feb 28)

Excellent!

by AlastairC (Feb 28)

Hi Stephanie
These are really good results - you should be feeling a bit more relaxed.
Just in case you want to make sure you understand the MR3, MR4 etc, there is a good explanation on this link.

by onekayaker (Feb 28)

PCR 0.0595%. My doctor called this MR 3. MR 3 are numbers that are <0.11%. She thinks I will be at MR 4 in 3 months time which is at least <0.011%. The next goal will
Category: Uncategorised

Replies: 3

Last updated: 28 February 2019
kali on 24 February 2019

Category: Uncategorised

Replies: 11

Last updated: 28 February 2019

Treatment Free Remission update
by AlastairC (Feb 28)

Kali, glad it was useful. Best wishes Alastair

by kali (Feb 28)

Alastair,
I watched Professor Clarke’s talk about the Destiny Trial. It was excellent! Thanks for suggesting it.

by kali (Feb 25)

Thanks Alastair! I will watch Professor Clarke’s talk. I appreciate the opportunity to learn.

by AlastairC (Feb 25)

Kali, yes my PCR jumped around a bit. The second last result during the year on half dose imatinib was about .02%, having been .0.000% for most of that period. Three months into attempting TFR my
Category: Uncategorised

Replies: 11

Last updated: 28 February 2019
johnw1001 on 26 February 2019

Category: Treating CML

Replies: 1

Last updated: 27 February 2019

ASH 2018 San Diego-whats new in CML?
by kali (Feb 27)

Thank you for this post about the ASH conference. It is great to have this summary of the main highlights.

I saw videos by Dr. Savage from Vanderbilt and from Dr. Mauro from Sloan Kettering

by johnw1001 (Feb 26)

Hi All,
I have been looking to see if anything new or interesting came out of the proceedings of the American Society of Hematologists held in San Diego last December and came across a video online
Category: Treating CML

Replies: 1

Last updated: 27 February 2019
Lucky Utubor on 24 February 2019

Category: Uncategorised

Replies: 5

Last updated: 27 February 2019

Supplements interaction
by Lucky Utubor (Feb 27)

Thanks a lot for your advice. Would do exactly that.

by Lucky Utubor (Feb 27)

Thank a lot I will do my own research .

by scuba (Feb 25)

Do your own online research on vitamin K2.
It's benefit is in calcium mobilization from soft tissue to bone. This is well known. Other claims regarding cancer and K2 are not well established.

by Nimbus2 (Feb 25)

I continue to worry about these apparent medical authorities for various vitamins and supplements. Here we have reference to a dentist who is making all sorts of unsubstantiated claims about
Category: Uncategorised

Replies: 5

Last updated: 27 February 2019
Jessicajewel on 27 February 2019

Category: Children & young people

Replies: 1

Last updated: 27 February 2019

Initial blood test results
by bendicco (Feb 27)

Please have the bloods run again and if the same or similar find a good oncologist! Frightening I know but if you do have CML or any other blood cancer you must be treated by an oncologist not you

by Jessicajewel (Feb 27)

Hello, based on some recent blood test results I am wondering if I might have early stages of CML. Could anyone tell me if they had similar results?
my eosinophils were 2666 (range 50-500)
my
Category: Children & young people

Replies: 1

Last updated: 27 February 2019
Tanya Cuffe on 2 February 2019

Category: Uncategorised

Replies: 2

Last updated: 26 February 2019

Bone pain/depression
by sorin real (Feb 26)

I repeat the answer given to Riggered :

I have CML and arthritis in the spine. My wife has knee arthritis.

We both use curcumin supplements for arthrosis and we both feel extraordinarily

by Ray Sell (Feb 6)

Hi Tanya. Your not alone. Having CML is depressing. If I have to have cancer, I'm thankful this is the one I have. I've had tremendous leg cramps, finger cramps, and

by Tanya Cuffe (Feb 2)

Hey friends!Can anyone offer advice on bone pain relief?Am hoping Sprycel switch will help but been using OxyContin,Panadeiene forte and now Targin...Pain relief also aids depression I find...
Category: Uncategorised

Replies: 2

Last updated: 26 February 2019
Chuckster on 30 November 2018

Category: Blood tests

Replies: 5

Last updated: 26 February 2019

Latest Blood Work Results: BCR/ABL-1 Gene, QN PCR
by AlastairC (Feb 26)

Good numbers. Very happy for you.

by Chuckster (Feb 26)

Just back from my Oncologist : Dr. Waina Cheng , Sparta New Jersey. (USA).
She is very happy with my blood test results, achieving MMR!
Diagnosed with CML Feb 12 2018 @ 100.00 and now- Feb 22,

by Chuckster (Feb 23)

*FISH Results from NOV- 2018- 0.000 Not Detected.
Chest X-Ray- no fluid in lower right lung- All Clear.
No Plural Effusion.

Latest Results from this past Monday- Feb 18th 2019
ABL

by Chuckster (Dec 1)

Thank You!
Category: Blood tests

Replies: 5

Last updated: 26 February 2019
Damian Gabilondo on 26 February 2019

Category: Uncategorised

Replies: 0

Last updated: 26 February 2019

LMC and antiboitics
by Damian Gabilondo (Feb 26)

Hello, I wanted to ask the experts who think about the publication I found, I have been reading about these antibiotics in conjunction with TKI for a long time
Thank you
https://spa.
Category: Uncategorised

Replies: 0

Last updated: 26 February 2019
Damian Gabilondo on 25 February 2019

Category: Uncategorised

Replies: 4

Last updated: 26 February 2019

PCR 9 months doubts
by Damian Gabilondo (Feb 26)

Thank you very much Alastair, the truth is that I should be happy about the results, but I let myself be carried away by anxiety, I should be more attentive to this, my oncologist told me that I

by AlastairC (Feb 25)

Damian as David says your progress is great. Trials have shown that sustained period on TKI therapy improves the chance of successfully achieving TFR. First step when you and your oncologist are

by Damian Gabilondo (Feb 25)

Thank you very much for the prompt response, I hope to go ahead and reach 4.5 at some point to try TFR that is my personal goal and that of my doctor at some point, having found 0.028 PCR at three

by David Fitz (Feb 25)

Hi there.
Achieving 0.028% after less than 6 months is an exceptionally good result. An “optimal” result (cf. European Leukaemia Net) would be 0.1% at that time, so you have blown that
Category: Uncategorised

Replies: 4

Last updated: 26 February 2019
sandy craine on 14 January 2018

Category: Other conditions

Replies: 18

Last updated: 26 February 2019

Alternative/Complimentary Therapy
by Ontasigna (Feb 26)

Hi Sandy
Quick question - does taking tumeric along with tasigna causes myelosupression or low wbc?
Is it safe to consume turmeric on tasigna treatment

by sorin real (Feb 25)

In brief: turmeric is the plant. Curcumin is a compound (along with several other hundreds) of that plant, about 2-6% of the plant. In a way, curcumin represents the "power" of turmeric.

You

by Diane CW (Feb 16)

Sorry if I am being a bit daft but do you take Curcumin in tablet form or a powder? I have been searching the internet and can’t find anything that comes in a dosage of grams. Can anyone help

by Phuong Phuong (Feb 16)

Hi Scuba
do you have any information about curcumin with imatinib? is it ok to take curcumin when you are on imatinib?
thank you
Category: Other conditions

Replies: 18

Last updated: 26 February 2019
Ontasigna on 15 February 2019

Category: Treating CML

Replies: 1

Last updated: 25 February 2019

Turmeric and Nilotnib
by sorin real (Feb 25)

Even I have CML and I have asked the same question as yourself. After a lot of research on the net where I did not find anything, I decided and wrote an email to Novartis ,the company that produced

by Ontasigna (Feb 15)

Hi there,
I am planning to start with Turmeric & black Pepper once a day. I have read posts of scuba about it.
My question - is it safe to take turmeric/black pepper with Nilotnib.
Thank you
Category: Treating CML

Replies: 1

Last updated: 25 February 2019
Skeltonn on 20 February 2019

Category: Treating CML

Replies: 4

Last updated: 25 February 2019

Sprycel and weight gain
by Chuckster (Feb 25)

No. Just the opposite.
I have experienced weight- loss of approx 20 lbs: From 195 lbs to around 175 lbs.
From Feb 2018 to Feb 2019
Holding around 175 lbs for the last 3 months.
Had to stop the 100mg

by Bill Miller (Feb 21)

Yes and yes. I had terrible fatigue on 140mg. I also waxed and waned between diarrhea and constipation, which amplified the fatigue. And I was only on at that dose for 3.5 weeks. I did also gain

by Skeltonn (Feb 21)

Thank you for the reply. I have gained about 30 pounds in the last 12 months. I am 12 months from first being diagnosed and still trying to navigate this disease.

by Dustylloyd (Feb 20)

Hi Skeltonn I put 2 stone in the first 12 months and to be honest 4 years later haven’t really chipped much of that off! but it hasn’t gone up any more, just seemed to have levelled off
Category: Treating CML

Replies: 4

Last updated: 25 February 2019
Carol on 24 February 2019

Category: Uncategorised

Replies: 0

Last updated: 24 February 2019

Hammersmith CML Support Group Meeting at Hammersmith Hospital Saturday 18th May 2019
by Carol (Feb 24)

Hammersmith CML Patient/Carer Support Group Meeting at Hammersmith Hospital EVERYONE WELCOME
CATHERINE LEWIS CENTRE RECEPTION HAMMERSMITH HOSPITAL Du Cane Road London W12 OHS.(rear of hospital)
The
Category: Uncategorised

Replies: 0

Last updated: 24 February 2019
bendicco on 24 February 2019

Category: Side effects

Replies: 2

Last updated: 24 February 2019

ABCESS RELATED TO GLEEVEC?
by bendicco (Feb 24)

Thanks Eva, last bloods in January were all good. Never had any issues like this before, not pleasant but hoping it isn’t related to the Gleevec. But as we all know when we have anything like

by Evelinka89 (Feb 24)

Hello,
abscesses are formed if phagocytosis does not work properly (mainly neutrophils, NK cells) or in case of presence of agressive pathogenic bacteria. What pathogen is causing this ? I

by bendicco (Feb 24)

Hi all. I have been on Gleevec for almost 3 yrs and recently have had an issue with an abccess on my inner thigh beginning 6 weeks ago . It was lanced 2x, antibiotics for almost 3 weeks.
Category: Side effects

Replies: 2

Last updated: 24 February 2019
Alaina on 13 October 2018

Category: Uncategorised

Replies: 20

Last updated: 24 February 2019

Tasigna and Supplements
by cmljax (Feb 24)

see this link:
https://www.vitacost.com/vitacost-root2-turmeric-extract-curcumin-c3-com...

by Alaina (Feb 22)

Hi Cmljax,
Can you share with me the brand of Curcumin supplement you take? And is Curcumin the same thing as Tumeric spice used in Mediterranean food?

by Alaina (Oct 19)

Scuba,

You need to be a registered consulant or paid educator. My mind is blown with the amount of knowledge you (and others) have and give on these threads. THANK YOU! I'll admit I am

by Alaina (Oct 19)

Denise, Thank you for the advice! I did not know this!
Category: Uncategorised

Replies: 20

Last updated: 24 February 2019
Sarah63 on 23 February 2019

Category: Uncategorised

Replies: 3

Last updated: 24 February 2019

Why no PCR tests with these numbers?
by scuba (Feb 24)

PCR is a measure of bcr-abl activity by CML cells. The more cml cells, the more PCR generally
Blasts are actual cells. There are normal blast cells and leukemic ones. The key is that blast cells

by Sarah63 (Feb 23)

This is very helpful info, Scuba, I’m not panicking at least. My last PCR was 11/28/18 at .32 International Standard. I guess the “Blast” percent is something else (not PCR

by scuba (Feb 23)

HI Sarah,
I followed a similar path to you with imatinib not working for me and then switch to Dasatinib and severe myelosuppression followed. I did not have a mutation test, but my doctor

by Sarah63 (Feb 23)

I changed oncologists last Summer. August PCR was 55%. He increased Gleevec. October was 29%, he was encouraged. November went to 32% along with significant myelosupression so he took me off Gleevec
Category: Uncategorised

Replies: 3

Last updated: 24 February 2019
Ontasigna on 19 February 2019

Category: Treating CML

Replies: 2

Last updated: 24 February 2019

Symptoms of Pleural effusion
by Ontasigna (Feb 24)

Hi Sarah,
Had been to Onc on Friday. Went through Blood test, LFT, Ultrasound and chest x-ray.
Ulteasound showed an reduces spleen of 14 cm (22 cm @dx). No Pleural effusion, lever and pancreas

by Sarah63 (Feb 24)

Any news or update? How you doing? Did you tell your doc?

by Ontasigna (Feb 19)

Hi all,
I have tightness on left lower abdomen since 4 days.
Worrying if it can be Pleural effusion. Please help me with symptoms of pleural effusion.
Apart from tightness/fullness i dont have any
Category: Treating CML

Replies: 2

Last updated: 24 February 2019
chigi on 23 February 2019

Category: Uncategorised

Replies: 1

Last updated: 24 February 2019

My Journey
by Sarah63 (Feb 24)

Hi Chigi,
Thanks for sharing your journey and especially this juncture. I feel myself walking beside you. Following this thread to learn what will come your way in practical response.
Sarah63

by chigi (Feb 23)

Hi Everyone - thought I would give my update incase anyone has any similar experiences to share. It has been a journey for me.
Some history:
Was diagnosed in late summer 2012 at age 38 and was on
Category: Uncategorised

Replies: 1

Last updated: 24 February 2019
Justina on 23 February 2019

Category: Side effects

Replies: 1

Last updated: 23 February 2019

Side Effects
by kat73 (Feb 23)

Yes, unfortunately, Gleevec does significantly lighten skin. It has to do with Gleevec's untargeted effect on melanocyte production (through c-KIT, I think). Nothing to be done about

by Justina (Feb 23)

Good afternoon,

I just want to find out, has anyone experienced hypo pigmentation whilst taking Gleevac?
I take 400mg but I can see that I am becoming lighter.

Even my friends have
Category: Side effects

Replies: 1

Last updated: 23 February 2019
VickyK. on 22 February 2019

Category: Side effects

Replies: 2

Last updated: 23 February 2019

Tasigna hair loss
by VickyK. (Feb 23)

I have a lot of hair loss and to be honest with you I am pretty worried....thank you for sharing your experience!I hope it will stop eventually.

by Ontasigna (Feb 23)

Hi Vicky,
Its been 2 months i am on tasigna 800 mg.
I do have a bit of hair loss but not significantly though.

by VickyK. (Feb 22)

Hello!Its the first time I am writing to the forum.I am Vicky, 31 years and been diagnosed with cml on October 2018.I started Tasigna 600mg on a daily basis and achieved MMR on my 1st test.I know
Category: Side effects

Replies: 2

Last updated: 23 February 2019