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

You are here

Forum

Justine on 16 April 2019

Category: Other conditions

Replies: 4

Last updated: 21 April 2019

Frequent cold sores
by Philip (Apr 21)

Justine, after my initial diagnosis, I found I was prone to colds. One after another. Once we found a dosage that was right for me, the serial colds stopped. I had wound-up in the hospital with

by David Fitz (Apr 17)

Don’t feel bad about asking your doctor, but it might be a more appropriate question for your GP / primary care doctor at least at first. Cold sores are generally caused by herpes viruses, and

by Justine (Apr 17)

Thanks Tbrand. Glad yours have gotten less frequent and smaller!

by Tbrand (Apr 17)

I have had those since I was a little kid. I’ve had my entire lips covered. They pop up one after the other. They suck, you can get Acyclovir 400mg prescribed, but is more effective at the
Category: Other conditions

Replies: 4

Last updated: 21 April 2019
Philip on 20 April 2019

Category: Blood tests

Replies: 4

Last updated: 21 April 2019

Recent Blood Work
by Philip (Apr 21)

Think that's what I've been thinking after having a few hours to think about it if ya know what I mean. I was taking 50mg of Sprycel for years. Went undetected until I stopped TKI therapy 3

by scuba (Apr 21)

Philip,
I take 20 mg sprycel and remain PCRU ('undetected'). Consider starting at that does and see if you PCR plummets which I suspect it will. You can always increase dose.

by Philip (Apr 21)

Hey David, thanks for the quick reply! I decided to discontinue TKI and try TFR after having a Complete Molecular Response for 8 going on 9 years. Was really hopeful that TFR would work for me.

by David Fitz (Apr 20)

You didn’t take your own life. But it would seem that trying to stop the drugs didn’t work out as you had hoped.
You’ll start to take your TKI again, and your PCR will go back down
Category: Blood tests

Replies: 4

Last updated: 21 April 2019
Reetz88 on 21 April 2019

Category: About CML

Replies: 1

Last updated: 21 April 2019

CML Blast Crisis
by Philip (Apr 21)

I was somewhere between the accelerated phase and acute phase in 2009. Can't remember the percentage of blast cells I had. Rather than a stem cell transplant, I was given a traditional chemo

by Reetz88 (Apr 21)

My husband was diagnosed with CML BLAST Crisis in August. He had a bone marrow transplant on Feb 27, 2019, from unrelated donor. Would love to hear from others who have had the blast
Category: About CML

Replies: 1

Last updated: 21 April 2019
Ontasigna on 17 April 2019

Category: Treating CML

Replies: 6

Last updated: 21 April 2019

Nilotnib and PPI
by David Fitz (Apr 21)

Ranitadine is a H2 agonist, and is a long-acting drug like omeprazole or esomeprazole (which are PPIs). So that's out, too, unfortunately.
Gaviscon is short acting - only a few hours. If you

by Ontasigna (Apr 21)

Yes, Doctor told me it might be bcoz of an stomach ulcer or I digestion or reflux.
My symptoms are similar to indestion and ulcer. No weight gain as such.
It's been like 5 days I have been on PPI

by David Fitz (Apr 21)

It's not a good idea as a long-term solution. The esomeprazole will reduce that 800mg of nilotinib to what is effectively a lower dose. I can't say to exactly what, but it's not

by Ontasigna (Apr 21)

Hi David,
My stomach burning has not reduced. Doctor has advised me to take PPI Twice a day. I take my TKI at 06.30 AM 06.30 PM and PPI at8. 30 AM & 08.30 PM. Is this ok. Kindly suggest.
I
Category: Treating CML

Replies: 6

Last updated: 21 April 2019
Nimbus2 on 20 April 2019

Category: Uncategorised

Replies: 2

Last updated: 21 April 2019

Is a transcript type different from a mutation?
by Nimbus2 (Apr 21)

I presume that medical students must learn some basics which are not addressed in the various scientific papers. I surmise that the "transcript type" is associated with breakpoints in the

by Poppert (Apr 21)

Good question. And what is the difference between a ”transcript type” and a mutation?

by Nimbus2 (Apr 20)

My transcript type is e13a2. Since this number does not occur in the mutation list provided elsewhere in this forum, I rather presume that "transcript type" is different from a
Category: Uncategorised

Replies: 2

Last updated: 21 April 2019
scuba on 15 April 2019

Category: Treating CML

Replies: 8

Last updated: 21 April 2019

Fasting impact on immune system
by Vijay Kumar Verma (Apr 21)

I am going to try 40+hours fast.

Thanks Scuba for great information

by scuba (Apr 17)

I have done many 40 hour fasts. It is great for metabolic restoration (prevents diabetes type 2) and weight management, but probably of no use for stem cells in terms of CML. The body needs time to

by Vijay Kumar Verma (Apr 17)

Hi scuba,

Some thoughts on 40 hrs fasting+moderate exercise.

by POPPY (Apr 17)

Hey Scuba! Thanks for your insight on this. The month of Ramadhan (fasting month for Muslims) is a few weeks away & my friend who has CML will be trying his best to fast throughout the month. He
Category: Treating CML

Replies: 8

Last updated: 21 April 2019
Poppert on 21 April 2019

Category: Side effects

Replies: 0

Last updated: 21 April 2019

Imatinib effect on vision?
by Poppert (Apr 21)

For some time now I have been feeling my vision has become worse. Especially after I moved up to 600 mg Imatinib. I went to my optician last week and she was quite surprised of the change. I have
Category: Side effects

Replies: 0

Last updated: 21 April 2019
Sarah63 on 16 April 2019

Category: About CML

Replies: 6

Last updated: 21 April 2019

How common is this...(?)
by Sarah63 (Apr 21)

Scuba,
They include 1) Misoprostol; 2) EPA (only) fish oil; 3) Sodium Selenite. All have cured CML in mice by killing stem cells. The theory is that CML people have dysfunction in the

by scuba (Apr 20)

Sarah ... what are the substances?
"Since February I have added substances known to obliterate leukemia stem cells in mice"

by David Fitz (Apr 20)

Fab! My doctor has been willing, but not as aggressive as I have wanted to reduce my dose. I’m down to 20 now and to be honest my pushing, and her resisting sort of met in the middle at the

by Sarah63 (Apr 20)

David and Scuba
Thanks for this info and the support. In fact my doc reduced me to 50 mg before we even got the last PCR result (.0542 IS). I had asked him to take me down to 20 but he declined. I
Category: About CML

Replies: 6

Last updated: 21 April 2019
Dustylloyd on 20 April 2019

Category: Other conditions

Replies: 2

Last updated: 20 April 2019

Philosophy on life
by Dustylloyd (Apr 20)

Thank you David for a perfect view and comment on my question, I think confidence took a bit of a knock when I was diagnosed, and it’s when you get other people’s views on your

by David Fitz (Apr 20)

Maybe finding a new philosophy on life would mean admitting that CML has changed you (nothing wrong with that, either). But perhaps just going on as you always have is a sign of strength that you

by Dustylloyd (Apr 20)

Hope this doesn’t seem strange, but I was just wondering how many “members” have got, and stuck to a new philosophy on life, when I was diagnosed January 2015 I promised myself
Category: Other conditions

Replies: 2

Last updated: 20 April 2019
nicolaclubb on 19 April 2019

Category: Organising your life

Replies: 5

Last updated: 20 April 2019

New diagnosis and complications
by scuba (Apr 20)

During this phase it is on again off again. He should not take ANY nilotinib until his Neutrophil count is above 1.0. He should stop taking nilotinib when his neutrophil count falls below 0.4
He

by Anna.h (Apr 20)

Thanks for sharing all this informatoin here I hope he gets better soon. My father is almost in the same condition and I am going to tell him about taking D3 and curcumin. After 10 days of no

by scuba (Apr 19)

Be very careful. Any sign of a fever - temperature above 99 degrees F (37.2 C) - go to the emergency room. You will need emergency attention. You do not want to take any fever reducer and wait until

by nicolaclubb (Apr 19)

Thank you for your reply. I had mentioned my Vitamin D the other day and they totally dismissed me?
Just got a copy of my blood results today and my neutrophil has now gone down to 0 which is
Category: Organising your life

Replies: 5

Last updated: 20 April 2019
Nimbus2 on 20 April 2019

Category: Uncategorised

Replies: 0

Last updated: 20 April 2019

Kinase Donain Mutation Testing
by Nimbus2 (Apr 20)

My consultant has stated, "I have asked the cytogenetic laboratory to initiate a KD mutation testing". With Googling, I can see that KD means "kinase domain".
What would I expect
Category: Uncategorised

Replies: 0

Last updated: 20 April 2019
LouiseS on 12 April 2019

Category: Uncategorised

Replies: 7

Last updated: 20 April 2019

Husband has reached undetectable
by Sarah63 (Apr 20)

This is amazing news! WOW!

by LouiseS (Apr 16)

Thanks for the good wishes. Each time he has cut down by 10 mg he has felt such a difference so really hoping a cut to 40 will help a lot.
Unfortunately his doctor wants him to stay on 60 mg

by scuba (Apr 13)

Hi David,
And now for something completely different.
Taking dasatinib can be good for you apart from CML!
https://www.sciencedaily.com/releases/2019/01/190107112944.htm
https://www.

by David Fitz (Apr 13)

Scuba, this is my opinion too. The DESTINY trial supports this too - depth of molecular response isn’t good enough to predict successful TFR, time at depth is important too. So there’s
Category: Uncategorised

Replies: 7

Last updated: 20 April 2019
Anna.h on 18 April 2019

Category: Getting help

Replies: 2

Last updated: 19 April 2019

Low platelet and wbc while on Nilotinib
by Anna.h (Apr 19)

Thanks alot for your reply.

He experienced pain for some months before the fracture, but unfortunately no doctor recognized it was because of a tumor, even his oncologist!

The only

by Job Guerra (Apr 18)

Naturally it is necessary to get back on the medication as soon as possible but I was wondering what they decided to do about the tumor? Did they call this a chloroma or myeloid sarcoma?

by Anna.h (Apr 18)

Dear all,

Hi,
My father was diagnosed with cml 12 years ago and was on Imatinib, but 8 months ago he had a fracture in his right tibia due to a tumor. Doctors guessed his tumor might be
Category: Getting help

Replies: 2

Last updated: 19 April 2019
VioS on 17 April 2019

Category: About CML

Replies: 9

Last updated: 18 April 2019

Tasigna after imatinib, i can not reach Mr 4, please to advised me
by Lucas (Apr 18)

Hi, vios. Hope you're fine. First of all: i would like to have another pcr before any change if i were you. Your pcr's still lower than your last pcr on imatinib and maybe the 0.011% was a

by David Fitz (Apr 18)

I’d get a new doctor if I were you. Nilotinib is tough on the heart, especially at high dose. I’d take pleural effusion over that, any day. Have a search on this site for pleural

by scuba (Apr 18)

Kat - Excellent summary from someone who has had pleural effusions and is successfully taking low dose dasatinib with continued great response. Look forward to you reporting your "6"

by kat73 (Apr 18)

Definitely get a second opinion, from a CML expert. If dasatinib were that dangerous I don't think so many of us would be taking it successfully. And yes, some of us with pleural
Category: About CML

Replies: 9

Last updated: 18 April 2019
Ontasigna on 15 April 2019

Category: Side effects

Replies: 5

Last updated: 17 April 2019

Severe stomach pain
by David Fitz (Apr 17)

My other post provides more detail, but yes it will reduce your absorption of nilotinib. However, for 10 days only I would not be concerned. Long term use is the problem.
David.

by onekayaker (Apr 17)

My understanding is that it interferes with absorption of TKIs. There is a time span between taking them. Pull up the info of your drug on line or the paperwork supplied with the

by Ontasigna (Apr 16)

Hi all,
Visited GE today, he says pain may be due to bacterial imbalance.
He prescribed me to take antacid for 10 days and live -Probiotics for 10 days.
Question - would taking antacid (

by Felix (Apr 15)

Hi, if pain is in the lower right hand side of your abdomen it could be your Appendix ,please don't wait any longer if it is ,Good Luck ,Denise.
Category: Side effects

Replies: 5

Last updated: 17 April 2019
gbatalha on 16 April 2019

Category: Blood tests

Replies: 3

Last updated: 17 April 2019

bcr-abl 12 months
by gbatalha (Apr 17)

Thank you both for your feedback.
G

by Job Guerra (Apr 16)

I would not be worried at all and in fact be pretty excited about 0.15%. Your trend is good and I would be thinking 0.0# is coming soon for you. Compare others numbers on the forum that have been

by AlastairC (Apr 16)

Simple answer from me is no you should not be worried. The trend is still downwards. The difference between your result and the guideline is within the repeatability of the test process. The

by gbatalha (Apr 16)

Hi everyone,
Just got the results for my 12 month bcr-abl and it came 0,15% vs. <=0,10% per ELN guidelines for 12 months.
I am on Imatinib 400mg daily. Values are dropping, 2,2% at 3 months
Category: Blood tests

Replies: 3

Last updated: 17 April 2019
Karinne on 12 April 2019

Category: Uncategorised

Replies: 6

Last updated: 17 April 2019

Follow-up on Sprycel related pleural effusion
by onekayaker (Apr 17)

Great!!!

by Karinne (Apr 13)

I want to thank you all for your support and tons of informations. It really helps me to be comfortable during this period of uncertainty.
I don’t know how long I could stay off the drug but I

by kat73 (Apr 13)

Hurray, Karinne!

by kali (Apr 13)

Karinne,
Great news!!! That is wonderful that your BCR ABL1 has stayed low.
I am happy to hear no plueral effusion!
Category: Uncategorised

Replies: 6

Last updated: 17 April 2019
Mixail on 15 April 2019

Category: Drug-drug interactions

Replies: 3

Last updated: 16 April 2019

Clinical trials in UK
by Mixail (Apr 16)

Thank you fingers crossed.

by Mixail (Apr 16)

Thank you fingers crossed.

by r06ue1 (Apr 16)

I believe that University of Glasgow is doing trials now, not sure what drug/drug combination they are using but the results looked very promising in mice.

by Mixail (Apr 15)

Hello all, I read a post from City of Hope saying that there where clinical trials of a drug similar to Miristen in the UK this year. Does anyone know anything about this it was posted on city of
Category: Drug-drug interactions

Replies: 3

Last updated: 16 April 2019
Sando on 16 April 2019

Category: Uncategorised

Replies: 4

Last updated: 16 April 2019

What information do I need to ask for from consultant?
by Sando (Apr 16)

Thank you!

by scuba (Apr 16)

Here is a very good reference on CML:
https://www.nccn.org/patients/guidelines/cml/index.html

by Sando (Apr 16)

Thats great David thank you.
We did ask about further bone marrow tests and he said not normally.
We also know that her platelets and red blood cells were normal (suppose the meds could alter that

by David Fitz (Apr 16)

Hi Lisa,
The bone marrow tests are the ones you should focus your questions on. Here's what I'd ask:
What form of CML is it and was any mutation testing done?
Likely answer is
Category: Uncategorised

Replies: 4

Last updated: 16 April 2019
fiona vaughan on 14 April 2019

Category: Uncategorised

Replies: 3

Last updated: 15 April 2019

Running
by Vijay Kumar Verma (Apr 15)

Wow,just amazing. Are you using runtastic apps?i would like to connect with runners with cml.i recently started running.

Wishing you all the best.

Vijay

by Alaina (Apr 14)

This is just amazing to me. My mind is blown. Congratulations!! Can u share how you trained? If I could get back to jogging 3 miles a day while on TKI, I'd consider it a miracle.

by David Fitz (Apr 14)

Wow, congratulations Fiona - that’s amazing.
I’d be impressed with myself running for the bus these days, so a half-marathon is incredible.
David.

by fiona vaughan (Apr 14)

5 months on treatment with nilotinib and four months post stress fracture of my pelvis following my bone marrow biopsy I have just completed a half marathon in Vienna this weekend. It was a
Category: Uncategorised

Replies: 3

Last updated: 15 April 2019