Cessation of nilotinib in patients with CML who have kept deep molecular responses for 2yrs

Combining Asciminib with Ponatinib Suppresses Emergence Highly Resistant BCR-ABL1 Mutants

Long‐term follow‐up of lower dose dasatinib (50 mg daily) as frontline therapy in newly diagnosed chronic CML

CML: the concepts of resistance and persistence and the relationship with BCR-ABL1

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Tanya Cuffe on 12 September 2019

Category: Uncategorised

Replies: 19

Last updated: 15 December 2019

Non detectable-Yay!Now what?
by scuba (Dec 15)

Zero side effects you can "feel" is good. We don't know what side effects are going on that you do not feel.
It is worth bringing up with your doc on the new data suggesting lower

by Felix (Dec 15)

Hi,my Doc was very insistent I go on 100 mg Dasatinib at the start but having read what Scuba had to say and all the information he provided I stuck to my guns and said no I wanted a lower dose .She

by jhorne1 (Dec 15)

Scuba,
With all that I've seen about 50 mg of Sprycel might be the new norm, is it worth bringing up with my Doc to adjust my dosage after the 1 month mark? I'm currently taking 100 mg

by Felix (Dec 14)

Hi Tanya, just got my latest bloods and I am undetectable now yippee ,hoping I can reduce dose soon to see if bone pain in my hip and shoulder goes away.I have had my hip xrayed and I have got very
Category: Uncategorised

Replies: 19

Last updated: 15 December 2019
Tanya Cuffe on 13 December 2019

Category: Uncategorised

Replies: 2

Last updated: 13 December 2019

Quick question,friends
by Tanya Cuffe (Dec 13)

Thanks,Kat,however am really feeling crook but probably the mind isn’t helping!Am not going to take pill until usual dose tonight..Thanks heaps for your quick response.Its great to be able

by kat73 (Dec 13)

Doubt seriously travails are due to missed pill. Mind games, I fear! The mind is VERY strong, and you feel shock, remorse, shame, and fear over your mistake. But it's just one

by Tanya Cuffe (Dec 13)

I missed my nightly dose of Sprycel for the first time and following day cannot believe how unwell I feel.Shocking headache,nausea,sweats and fatigue,just from one missed pill!Why is this and is
Category: Uncategorised

Replies: 2

Last updated: 13 December 2019
StewartOC on 9 August 2019

Category: Side effects

Replies: 3

Last updated: 13 December 2019

Bosulif / Bosutinib - Mobility Issues
by Julia.K (Dec 13)

Hi Stewart, I am about to being switched to Bosutinib (Imatinib seems to stop working one me), and I am scared of it...., how long have you been taking Bosutinib?'

by StewartOC (Aug 12)

Hi Pat,
My heart seems to be fine. I'm monitored pretty regularly due to intolerance issues and slow responses in the blood work. For me, bosutinib has actually been an improvement over imatinib

by hannibellemo (Aug 12)

Hi, Stewart,
This is totally off the top of my head, but...how long were you on nilotinib? I ask because peripheral vascular side effects have become a concern. Could this be a side effect from

by StewartOC (Aug 9)

Hi all!
I'm new to forum but was diagnosed two and a half years ago when I was 29.
After failing imatinib and nilotinib I've been placed on bosutinib and although I have less cognitive side
Category: Side effects

Replies: 3

Last updated: 13 December 2019
StuartK on 12 December 2019

Category: Treating CML

Replies: 4

Last updated: 13 December 2019

Just started Imatinib
by StuartK (Dec 13)

Hi Alex
Mine is more of a rash, not raised or dot like and it's pretty much everywhere on my torso legs and now arms. More alike to a heat rash without the heat, however so far it's not

by alexmcpee (Dec 12)

Hi Stuart,
I’ve been on treatment for 20months and I have small red raised pimples at the hair follicle on my upper arms, upper legs and some other parts. It’s Folliculitis and you can

by StuartK (Dec 12)

Hi David
Thanks for replying. I think it's just a reaction rash and should fade, its mentioned in my imatinib fact sheet. It doesn't look like any of the pictures I looked at, even for mild

by David Fitz (Dec 12)

Hey Stuart, there are no frauds when it comes to CML. If you have it, I'm afraid to tell you that you are not a fraud! You really have CML, you really have cancer and that's the end of that
Category: Treating CML

Replies: 4

Last updated: 13 December 2019
VioS on 12 December 2019

Category: Reproductive health

Replies: 2

Last updated: 12 December 2019

CML and Fertility
by VioS (Dec 12)

Yes, exactly whatt i was loking for, Gianatonio Rosti, many jokes in his spech,thank you very much David!!!

by David Fitz (Dec 12)

That sounds like Gianantonio Rosti. Lovely guy and always very funny in person - a real CML expert. I'll see what I can dig out. I don't recall him doing a speech about fathering children on

by VioS (Dec 12)

Helo David, you send my into a previous post a coment with a link to a video where a italian CML specialist speaks about fathering child on TKI, please if you still have it put it here, i need
Category: Reproductive health

Replies: 2

Last updated: 12 December 2019
nk_godvani on 12 December 2019

Category: Uncategorised

Replies: 1

Last updated: 12 December 2019

PCR fluctuating
by David Fitz (Dec 12)

Totally normal.
You are at MR4, virtually. PCR is not an exact science, and if you test the same blood twice you will get two different results.
You're doing great!
David.

by nk_godvani (Dec 12)

Hello

I am on imatinib since diagnosis. Recent PCR is 0.013 IS @42 months
@18 month-undetactable

21 month - 0.022

24 month - undetactable

27 month - undetectable

33
Category: Uncategorised

Replies: 1

Last updated: 12 December 2019
RB on 12 December 2019

Category: Food & fitness

Replies: 4

Last updated: 12 December 2019

Xmas Food!
by RB (Dec 12)

Haha! Thank you! Merry Xmas and happy new year to you too!

by Felix (Dec 12)

Hi, only 6 mince pies ,you on a diet ,haha ,go for it and enjoy every last crumb.Merry Christmas and Happy New Year .

by RB (Dec 12)

Hi David,
Thanks very much for your message. Very helpful information. I think, when first diagnosed, I felt that so much of my life and course of my illness was out of my control that it felt

by David Fitz (Dec 12)

Hi RB,
People overthink this one all the time. Stick clear of grapefruits and grapefruit juice.
You'd have to eat an emornous amount of pomegrante to cause a problem. Stick clear of 100%
Category: Food & fitness

Replies: 4

Last updated: 12 December 2019
Ron M on 12 December 2019

Category: Uncategorised

Replies: 1

Last updated: 12 December 2019

Confused!!!
by cmljax (Dec 12)

The increase in November is surprising. I think your doc increased your dose to 70 mg too quickly - should have done one more PCR this month to confirm rising trend. Dosing is very much an

by Ron M (Dec 12)

Hello All,
One of my friend suggested me to post my situation in this forum. I am new to this. Diagnosed in April 2018, Started Sprycel 100 mg. Got MMR in 12 months. Then the the problems started,
Category: Uncategorised

Replies: 1

Last updated: 12 December 2019
Mick E on 11 December 2019

Category: Uncategorised

Replies: 0

Last updated: 11 December 2019

Nilonotib update
by Mick E (Dec 11)

Due to major stomach problems and feeling very unwell, I asked to drop to 300mg once a day to help alleviate the problems eating. That was still causing problems with diarrhoea if I
Category: Uncategorised

Replies: 0

Last updated: 11 December 2019
Ontasigna on 11 December 2019

Category: Treating CML

Replies: 8

Last updated: 11 December 2019

High WBC - cml progressing??
by scuba (Dec 11)

Not really - it is, however, very possible for WBC's (leukocytes) to jump dramatically in the presence of an infection including pregnancy for women. 16,000 - 18,000 is not unusual in those

by Ontasigna (Dec 11)

Ohh okay. My CBC couple of weeks back was good around 8800. Is it possible to lose response so quickly.

by scuba (Dec 11)

Your white blood cell count is showing a sharp rise which could easily be caused by an infection you may be fighting.
You could be losing response, but given that you PCR from a few months ago was

by Ontasigna (Dec 11)

Kindly help me with your suggestions. I am really worried.
Category: Treating CML

Replies: 8

Last updated: 11 December 2019
Iyadede on 3 December 2019

Category: Blood tests

Replies: 3

Last updated: 11 December 2019

Imatinib not working
by David Fitz (Dec 11)

Oh my goodness ... that is a massive difference. Congratulations - I’m thrilled for you. I know availability of TKIs other than imatinib is very difficult in Rwanda so I am so happy for you to

by Iyadede (Dec 10)

Hi Evah,

Good to know there is someone from Rwanda on this platform and Thank you for reaching out.
After an investigation with the doctors and the pathologists, it turns out the

by EvaH (Dec 6)

hey there
I was diagnosed in Rwanda too and was recently out the hospital in Eastern Province! I know that some of the machines in Rwanda arent very sensitive to high counts or high PCR, or at least

by Iyadede (Dec 3)

Hi Everyone,
I went to the Doctor last 2 weeks and he suggested that I reduce the dose to 200mg (I normally take 400mg Glivec) because my WBC was low. He also sent me to the Lancet
Category: Blood tests

Replies: 3

Last updated: 11 December 2019
Tater1 on 4 December 2019

Category: About CML

Replies: 14

Last updated: 11 December 2019

Introduction and Thank You
by David Fitz (Dec 11)

Wow, that’s amazing to hear. I have no idea how many people have seen that video but I’m really pleased to hear it gave you some comfort.
If you want to read about other CML patients

by kat73 (Dec 11)

Thank YOU. My best Christmas present, to know any words of mine have helped.

by Tater1 (Dec 11)

Believe it or not, this video comforted me in the hospital the night I was diagnosed. It must have been 3 am when I saw it and was able to put my phone down and sleep. Thank you!

by Tater1 (Dec 11)

Hi kat73,
Yes, yes, all of what you said! I asked my husband to read your response because it is so accurate to how I’m feeling. Thank you so much. I’ll come back to
Category: About CML

Replies: 14

Last updated: 11 December 2019
jhorne1 on 1 December 2019

Category: About CML

Replies: 11

Last updated: 11 December 2019

Recently diagnosed. Many questions.
by David Fitz (Dec 11)

A bit of expansion on (3) ... the PCR test can be a range of values at diagnosis. Some people are as low as around 10% and others well above 100% (mine was over 300%).
So your PCR result at

by RC Kirk (Dec 11)

Hi Jon,
In regard to your questions:
1) Immunity system - Is it compromised at all? Either with CML or Sprycel?
Sprycel can cause immunosuppression, especially at higher doses. If you read the

by jhorne1 (Dec 7)

All,
Thanks for all the great info. I'll def be asking a lot of questions at my next appt 23DEC.
Another few questions for the group:
1) Immunity system - Is it

by Cdonohue95 (Dec 4)

Hey Jon,
I was just like you where it happened out of no where. I was at 450k WBC. I was admitted to MUSC in Charleston, SC. They took very good care to me and put me right away on Sprycel 100mg. I
Category: About CML

Replies: 11

Last updated: 11 December 2019
gbatalha on 11 November 2019

Category: Uncategorised

Replies: 9

Last updated: 11 December 2019

18 months result
by gbatalha (Dec 11)

Need wisdom!
Just got my 19 months results … BCR-ABL and the 0,074% is now 0,078% (which at 32000 samples is ~1 cell).
The lab did not perform mutational analysis given that the

by kat73 (Nov 18)

You did not mention the 35 bp insertion before. That does indeed call for more monitoring, as you have undoubtedly read amongst the studies a Google search will bring up. Your doctor

by RC Kirk (Nov 18)

Hopefully your 18 month PCR result isn't a sign of a problem and your doctor is just being cautious. My PCR scores have also wandered a bit through the years.

2012 118.683%,

by gbatalha (Nov 18)

Hi everyone,
Apologies in coming back to this topic, given the rise in bcr abl my doc ordered me to urgently (today) do a blood test and a new quantification of bcr-abl combined with a new
Category: Uncategorised

Replies: 9

Last updated: 11 December 2019
Vikram on 12 November 2019

Category: Uncategorised

Replies: 6

Last updated: 10 December 2019

IMTINIB (GLEEVEC) and generic
by MartinZA (Dec 10)

Hi all
Very interesting and informative discussion!
My two cents' worth: I have been on several different generics of imatinib and am currently on Mivesta. According to my doctor, this is the

by EvaH (Dec 6)

I have been on generic imatanib made by Teva, Sandoz and one other (I forgot the name)
I had NO difference in results with any of them but I preferred Sandoz because the Teva pills are huge and the

by Nimbus2 (Nov 16)

I raised this matter using the United Kingdom Medicines and Healthcare Products Regulatory Agency (MHRA) Yellow Card scheme. Here is an extract from the MHRA response. My main problem was with the

by Vikram (Nov 15)

Thank you for your reply
Category: Uncategorised

Replies: 6

Last updated: 10 December 2019
jhorne1 on 9 December 2019

Category: Uncategorised

Replies: 2

Last updated: 10 December 2019

Fibrosis
by sisyphus (Dec 10)

Just to offer something of a counter narrative: in my case, it has paid dividends to examine information and ask probing questions.
Had I not noticed and researched the acronyms 'MPD and CML

by Tater1 (Dec 9)

Hi
I did exactly the same thing with fibrosis. My result report stated grade 1 so thought “well if it is a grade at all it’s serious”. But I found nothing on the

by jhorne1 (Dec 9)

All,
Just a reminder to speak to your doctor before you try to interpret labs yourself. Was able to look at my bone marrow biopsy before the doc called me this morning to chat about it. It did
Category: Uncategorised

Replies: 2

Last updated: 10 December 2019
Vijay Kumar Verma on 22 October 2019

Category: About CML

Replies: 10

Last updated: 10 December 2019

PCR@27MONTHS
by David Fitz (Dec 10)

Hi, I would agree that it's not necessarily a good idea to change dose. If you really want to get to MMR ASAP changing drug would probably be the quickest way to do that. But that doesn't

by Felix (Dec 10)

Hi, I wouldn't increase the dose it will only increase the side effects and it's you who has to cope with them not your doc.Why are some docs in such a hurry ,as long as the trend is

by JacqJohn (Dec 10)

Actually I'm also in the same situation. I'm now at 27months into Imatinib and my latest PCT results is still at 0.2% (IS).
It is "steadily" dropping but really at a slow rate.

by ColoradoGuy (Oct 22)

David - That is correct it is on International Scale. I, and everybody else hanging out in CCyR is hoping to eventually cross that 0.1 barrier but I too have read from a number of sources that
Category: About CML

Replies: 10

Last updated: 10 December 2019
jhorne1 on 9 December 2019

Category: Uncategorised

Replies: 3

Last updated: 9 December 2019

TKIs and supporting vitamins
by alexmcpee (Dec 9)

No probs Jon.
I’ve only recently cut out red meat because I used to eat a lot of it and from a digestion point of view it’s hard on the stomach and I know TKIs are tough on the gut so I

by jhorne1 (Dec 9)

Alex, thanks for the info. I've really only cut out red meat and alcohol right now from the diet. I've also been doing smoothie way more to make sure I'm getting the good

by alexmcpee (Dec 9)

Hey,
My specialist said don’t bother, if you get a proper balanced diet you’ll get it all from food.
I’ve seen a long list on this site over the last couple of years.
Circumin (

by jhorne1 (Dec 9)

All,
What additional vitamins are you taking along with your TKIs and why? All I've seen is Vitamin D and Magnesium. What about green tea? I keep reading conflicting info.
Category: Uncategorised

Replies: 3

Last updated: 9 December 2019
Vikram on 24 November 2019

Category: Uncategorised

Replies: 11

Last updated: 9 December 2019

Drug stop working ..... Chances???
by Vikram (Dec 9)

Thanks for reply......
SORRY MY ENGLISH NOT GOOD....
(Age 27)

(diagnosed 2008)(early)

(1,80,000 wbc in cbc) (400 mg dose)

(in 2010) (600 mg dose)

(in 2011 pcr UNDETACTABLE

by AlastairC (Dec 7)

Hi Eva, I understand that doctors are reluctant to deviate from established practice in their different countries. However, there is a significant improvement in my sense of well-being have so far

by MartinZA (Dec 6)

Hi EvaH
Very, very true - I am in South Africa and it is really hard to have these sorts of dosage reduction discussions as there is a great deal of resistance and reluctance to switch patients. I

by EvaH (Dec 6)

Side note to allstair : Docs outside the UK are very very reluctant to do dosage reduction unless there are severe life limiting side effects. I've asked in a few different countries.
Category: Uncategorised

Replies: 11

Last updated: 9 December 2019
starente on 9 December 2019

Category: Getting help

Replies: 0

Last updated: 9 December 2019

Sprycel financial assistance
by starente (Dec 9)

Hi folks
is anyone aware of the maximum adjusted gross income that a patient can have to get assistance from BM? I remember seeing it at one point but can’t find it now. TIA!
Category: Getting help

Replies: 0

Last updated: 9 December 2019