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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Reetz88 on 21 April 2019

Category: About CML

Replies: 2

Last updated: 21 April 2019

CML Blast Crisis
by Tbrand (Apr 21)

I was diagnosed borderline blast phase on NewYears eve 2015. Months before felt under the weather, a few weeks of bone pain when walking. It all went away and went to the Dr. for a knee issue. Took

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: 2

Last updated: 21 April 2019
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
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
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
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
Adelaide Gomes on 14 April 2019

Category: Treating CML

Replies: 1

Last updated: 15 April 2019

Heart Issues
by David Fitz (Apr 15)

Hi Adelaide,
Are your doctors certain this has happened since your were diagnosed? Or, is it possible you've had this left atrium enlargement for some time before?
It's not an issue I have

by Adelaide Gomes (Apr 14)

Hi Everyone, I am a CML patient, and was diagnosed with left atrium enlargement. Does anyone here have heart issues? I have taken Gleevec 300 mg. for 5 years, our miracle drug. Is this reversible?
Category: Treating CML

Replies: 1

Last updated: 15 April 2019
Damian Gabilondo on 10 April 2019

Category: Uncategorised

Replies: 3

Last updated: 15 April 2019

Hepatic toxicity Nilotinob
by David Fitz (Apr 15)

Try that link again - I've edited it to correct it.
Fasting is indeed a difficult one. For that reason, I oped for dasatinib over nilotinib since they are otherwise roughly as effective as each

by Damian Gabilondo (Apr 14)

Thanks David for your answer, the link you shared seems not to work, if you can send it again I would appreciate it.
I am in RMM PCR 0.022 9 months after the diagnosis with Tasigan 300 mg, my

by David Fitz (Apr 12)

Your English is fine!
All TKIs carry hepatoxicity risk, but ponatinib is the one with by far the highest risk. There are some interesting statistics here:
https://www.ncbi.nlm.nih.gov/pmc/

by Damian Gabilondo (Apr 10)

Hello, sorry for my English, I wanted to consult with the experts, in May it will be 1 year after starting my treatment with Nilotinib 300, my PCR February 2019 was 0.022, the liver values went up
Category: Uncategorised

Replies: 3

Last updated: 15 April 2019
Sando on 14 April 2019

Category: Uncategorised

Replies: 6

Last updated: 15 April 2019

Mum newly diagnosed
by Sando (Apr 15)

Thank you very much for your response and I hope you are doing well.

by Felix (Apr 14)

Hi Sando,sorry to hear about your Mum but try not to worry hopefully the worst bit is over the dreaded bone marrow test that is the worst bit for me. ,I know it's a huge shock when the word

by Sando (Apr 14)

Thank you for your reply, hoping and praying this is the case.

by David Fitz (Apr 14)

Routine tests are the best way to discover you have CML, because it usually means it’s caught well before it becomes symptomatic. In all likelihood, the imatinib will get it under control nice
Category: Uncategorised

Replies: 6

Last updated: 15 April 2019
Felix on 4 March 2019

Category: Uncategorised

Replies: 12

Last updated: 13 April 2019

Scuba 50 or 70 Dasatinib
by Felix (Apr 13)

Yes I am going to do just that ,print some off and show her on my next visit ,thank you .

by scuba (Apr 13)

Show your doctor the literature and research articles you have seen posted here on the new findings regarding dose.
Remind her biology of cancer is not the same as biology of bacteria or virus

by Felix (Apr 13)

Hi, my Doc was horrified when I told her I was only taking 50mg instead of 70 she subscribed ,her gob dropped haha,I can just imagine her face when I suggest 20 mg in the future,she will throw me

by Felix (Apr 13)

Hi Kat ,that is so good to hear,thank you very much ,Denise.
Category: Uncategorised

Replies: 12

Last updated: 13 April 2019
David83 on 30 January 2019

Category: Uncategorised

Replies: 9

Last updated: 13 April 2019

An Unconventional Nilotinib Reduction
by David83 (Apr 13)

Thanks for the info Kat and Buzz.
I think I’m pretty set on requesting a switch to sprycel and seeing how that works. It was discussed briefly but the decision was delayed so more research and

by Buzzm1 (Apr 12)

David, Sprycel 50mg, at most; if Sprycel is going to work for you it will work at 50mg. or less. Easier on the counts too.

by kat73 (Apr 11)

Well, that's another point in Sprycel's favor. I was doing OK on Gleevec (CML-wise) but I was definitely a turtle. When I switched to Sprycel, my PCR zoomed down quite a bit,

by David83 (Apr 11)

Thanks Kat, it’s difficult to know what the best way forward is but my concern is that I’m somewhat time limited work wise. I work in an industry that requires strict medical checks and
Category: Uncategorised

Replies: 9

Last updated: 13 April 2019
kali on 23 March 2019

Category: Uncategorised

Replies: 45

Last updated: 13 April 2019

Update on Plueral Effusion and break from Sprycel
by kali (Apr 13)

Good response😊

by scuba (Apr 13)

Where do I send the invoice?

by kali (Apr 13)

Update:
I have been taking 20 mgm. for quite a few days with no side effects.
My doctor reached out to Dr. Cortes on my behalf and he shared that 20 mgm of Sprycel is often used in cases like mine.

by kali (Apr 2)

Thanks for the explanation. I have an analytical mind and the details you just put forth makes a lot of sense. Probably why I ask so many questions!
The analogy to lock and key is helpful,
Category: Uncategorised

Replies: 45

Last updated: 13 April 2019
Ontasigna on 12 April 2019

Category: Treating CML

Replies: 2

Last updated: 12 April 2019

Nilotnib & Lemon
by Ontasigna (Apr 12)

Thanks David!! I mean not full glass of lemon juice (90% water and 10% lemon).
Some studies say - to avoid citrus fruits while on Nilotnib. Has any one tried lemon?

by David Fitz (Apr 12)

Yes, absolutely fine.
My question would be why you would want to in the first place!! 🤢 I don't think I could stomach a glass of lemon juice!
David.

by Ontasigna (Apr 12)

Hi all,
Is it ok to drink Lemon juice while on Nilotnib?
Kindly suggest.
Category: Treating CML

Replies: 2

Last updated: 12 April 2019