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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David Fitz on 12 October 2019

Category: Uncategorised

Replies: 4

Last updated: 16 October 2019

PinnedVideos of UK CML Patient Day now available
by Mick E (Oct 16)

Thanks for taking the time to put it together and posting! 👍🏻😁

by Sunny (Oct 15)

Very helpful, thank you very much David.
Sunny.

by Nazia (Oct 14)

Thanks, david

by Nimbus2 (Oct 13)

Thank you, David, I appreciate but this must have been a lot of work for you. Even having attended the conference, I am viewing the videos again. The 10:55 presentation by Jane Apperley and the 11:
Category: Uncategorised

Replies: 4

Last updated: 16 October 2019
Vikram on 13 October 2019

Category: Blood tests

Replies: 9

Last updated: 17 October 2019

Cbc report
by Vikram (Oct 17)

Thank for reply......

by scuba (Oct 16)

I understand Vikram's question differently.
Now that his CML is under control and "undetected". His question (to me) is, does he have CML?
The answer is "maybe". Odds are he

by David Fitz (Oct 16)

Vikram,
As everyone has said, you cannot diagnose CML from a plain old blood test (e.g. full blood count, biochemistry etc.).
Blood tests are not as simple as running one and seeing everything. You

by Vikram (Oct 16)

Please reply......
Category: Blood tests

Replies: 9

Last updated: 17 October 2019
lupus on 16 October 2019

Category: Blood tests

Replies: 2

Last updated: 16 October 2019

Understanding my PCR results
by David Fitz (Oct 16)

If your doctor is not being helpful, just ask for a copy of the lab report. You’re entitled to it and it will tell you what you need to know and we can help you interpret it.
David.

by RC Kirk (Oct 16)

Hi Tomas,
It might be helpful for you to get copies of your BCR/ABL1 PCR reports. If you're correct and your three month PCR score was 1.4% IS (International Standard), then you're

by lupus (Oct 16)

Hello everyone,
could you please help me understand my pcr results as my physician is kind of enigmatic about this particular matter. Today (after 4 months), I finally succeded in convincing (we had
Category: Blood tests

Replies: 2

Last updated: 16 October 2019
Mixail on 16 October 2019

Category: Blood tests

Replies: 2

Last updated: 16 October 2019

Has anyone seen this article from October 15th. Is this be real. Thank you.
by Mixail (Oct 16)

Thank you David.

by David Fitz (Oct 16)

Not necessarily not “real” - but it’s a mouse study, so a long way away from common in clinic.
All the same, there are upcoming trials that will look to combine other drugs (

by Mixail (Oct 16)

http://newsroom.ucla.edu/releases/antibody-eradicates-leukemia-stem-cells
Category: Blood tests

Replies: 2

Last updated: 16 October 2019
RC Kirk on 16 October 2019

Category: Treating CML

Replies: 1

Last updated: 16 October 2019

Precision dosing using concentration-controlled dosing of TKIs for CML could maximize the clinical benefit and minimize toxicity
by David Fitz (Oct 16)

Seems like “common sense”, but I imagine it’s a lot harder to manage a large number of patients in a clinic environment like this.
I now here in the UK this is sometimes done

by RC Kirk (Oct 16)

This makes a lot of sense to me. I wonder if it will ever become a standard practice in the treatment for CML?

[Management using the plasma concentration of tyrosine kinase inhibitors
Category: Treating CML

Replies: 1

Last updated: 16 October 2019
SamandRich on 16 October 2019

Category: Treating CML

Replies: 1

Last updated: 16 October 2019

Myelostat
by David Fitz (Oct 16)

Hi there,
I don’t have any experience with this medication, but others may know it better by it’s other names - Omacetaxine or Synribo, but if I’m reading things right this is an

by SamandRich (Oct 16)

Hi guys, hope you are all doing well. I've just had my medication changed to myelostat and read that it has severe nausea and hair loss as some of the side effects , has anyone else experienced side
Category: Treating CML

Replies: 1

Last updated: 16 October 2019
ipmaki on 29 April 2019

Category: Treating CML

Replies: 40

Last updated: 16 October 2019

Sprycel - Lack of Response
by kat73 (Oct 16)

My history mirrors David's, except it took me 22 months to reach MMR way back when. But I'm in the same place now, on 20 mg Sprycel. (The 22 months were on Gleevec, so perhaps

by ipmaki (Oct 16)

Busaboy, David, and ColoradoGuy. Thanks for sharing your experiences. I feel much less anxious when I hear about similar trends. Sometimes I think it would be better not to know the milestones set

by David Fitz (Oct 15)

I was just looking at my own results, it took me 19 months to achieve MMR some years back. I wasn't the fastest responder.
I got my most recent result today (on 20mg of Sprycel, after an 18

by ColoradoGuy (Oct 15)

Thank you for posting your positive results for those of us who are around the same age and seeing very similar trends. Very encouraging.
Category: Treating CML

Replies: 40

Last updated: 16 October 2019
Nazia on 14 October 2019

Category: Treating CML

Replies: 9

Last updated: 16 October 2019

Currently diagnosed CML
by David Fitz (Oct 16)

Don't just accept the suffering ... if it continues, or gets worse talk to your doctor about trying a different TKI.
In the meantime, experiment with heat (hot water bottles, hot bath) or cold (

by Nazia (Oct 16)

Thanks David,

My pain is constant not as cramps

Its nor too sharp neither mild it is moderate but keeps me restless

I really want to get rid off it because it has disturbed my

by David Fitz (Oct 16)

Hi again Nazia,
Is the pain constant, or does it come and go? When I had sharp pains at the start of my treatment, they would be not too bad and then suddenly for a very short time extremely painful

by David Fitz (Oct 16)

Well, it’s just plain old codeine - a simple opiate. It works well on pain. Addiction problems with opiates happen when taken for a long time, and in the absence of actual pain to deal with. I
Category: Treating CML

Replies: 9

Last updated: 16 October 2019
Sd on 12 October 2019

Category: Uncategorised

Replies: 6

Last updated: 15 October 2019

Thinning hair
by Sd (Oct 15)

Hi Vicky,
I never have had eyebrows, so no loss there. None the less, all these messages are encouraging. I don't intend to be vain. I am just curious about what others have experienced.
Thanks

by VickyK. (Oct 15)

Hi!

I had the same problem but with nilotinib.The first 3 months I was loosing a lot of head hair and my eyebrows almost disappeared but now after one year are much better.Hope the same for

by Sd (Oct 13)

Actually menopause took care of my leg hair and already started contributing to thinning hair on my head.
May I ask if you took imatinib initially? If so why are you now taking nilotinib?

by Sd (Oct 13)

Thank
S th

Thanks so much for the info.
Category: Uncategorised

Replies: 6

Last updated: 15 October 2019
jmonzione on 14 October 2019

Category: Children & young people

Replies: 2

Last updated: 15 October 2019

Small rise in PCR ABL test
by jmonzione (Oct 15)

Thanks for sharing your experience with this! It’s so stressful! Are you a sprycel patient as well?

by Antibody Boy (Oct 15)

Your last two qPCR values, 0.08% and 0.18%, are not significantly different based on the error of the method (typically taken to be around +/- 0.5 log). These numerical blips occur frequently

by jmonzione (Oct 14)

Quick question to the group - I have been taking 100mg of sprycel for the past 18 months. I have always had a downward trend in my PCR ABL number. In May I got my MMR and believe my number was .08
Category: Children & young people

Replies: 2

Last updated: 15 October 2019
Aeje10327 on 11 October 2019

Category: Blood tests

Replies: 2

Last updated: 15 October 2019

Neutropenia when starting gleevac
by kat73 (Oct 15)

Yes, a lot of us get that low, and some of us stay there. If it drops down to .5 the docs begin to get nervous. When I was on Gleevec, it took me some months (and a couple of breaks,

by Crfharris (Oct 12)

My neutrophils dropped to 1.3 after 30 days on imatinib. Doctor said they didn't want to see it drop below 1 and this was not unusal. He wasn't sure if it had already dropped to the lowest

by Aeje10327 (Oct 11)

I have been on 400 mg of gleevac for around a month. I just went for follow up and my WBC count was 1, 0% neutrophils. I know people have mentioned that their counts dropped when first starting
Category: Blood tests

Replies: 2

Last updated: 15 October 2019
scuba on 12 October 2019

Category: Uncategorised

Replies: 2

Last updated: 15 October 2019

Food (or lack thereof) for thought ...
by scuba (Oct 15)

You need to be fasting more than two days to get the autophagy benefit. Autophagy ramps up when your body enters ketosis. I verify using ketone strips.
Staying in ketosis for a period of time allows

by Antibody Boy (Oct 15)

Cool insights regarding potential immune cell trafficking. I have been intermittent fasting regularly for nearly a year now with an eating window of 6-8 hours per day. The purpose of this is

by scuba (Oct 12)

https://www.wbur.org/commonhealth/2019/08/23/intermittent-fasting-immune...
'Magic Soup': How Intermittent Fasting May Enhance The Immune System
Category: Uncategorised

Replies: 2

Last updated: 15 October 2019
ian hinley on 17 October 2018

Category: Treating CML

Replies: 65

Last updated: 12 October 2019

Starting TFR in November after 9 years of daily drugs
by ian hinley (Oct 12)

Yes am taking 4 Brazil nuts daily and also supplementing vitamin d. Hopefully just bouncing and next month will be a key result 🤞

by scuba (Oct 12)

Ian - There does seem to be a trend, but it is still below the "resume" threshold.
Are you taking selenium? (200 mcg per day). Recent research suggests selenium interferes with leukemic

by ian hinley (Oct 12)

Results today not so good up to 0.084 from 0.030 last month but still below 0.1 so have couple of months drug free at least ahead. 11 months TFR now, so will make it over a year drug free but still

by scuba (Sep 19)

You are in the noise of the test. You are looking very stable.
Also - we don't know if your levels are now the result of normal bcr-abl formation that happens naturally in normal population. In
Category: Treating CML

Replies: 65

Last updated: 12 October 2019
labros on 9 October 2019

Category: About CML

Replies: 4

Last updated: 11 October 2019

3-months results reveal that I achieved MMR in the peripheral blood but not CCyR in the bone marrow
by ColoradoGuy (Oct 11)

I had a strange result about a year ago too but probably the opposite from this example. My BMB showed 0.11 while blood pcr was around 0.3.....Dont fully understand it but don't really want another

by labros (Oct 11)

Thank you both for your answers. I've called the lab that did the analysis of the bone marrow, since I was curious as well. They've informed me that more than 20 molecules have been tested (

by alexmcpee (Oct 11)

I always wondered about this correlation of PCR <1% and CCYR through bone marrow. I always wondered why if the <1% PCR do they even do a bone marrow test if that is the correlation. I realise

by David Fitz (Oct 10)

Hi,
You are right - it means you are in an unusual situation where your PCR is below 0.1% but you have not yet achieved CCyR. CCyR is usually roughly proxied to a PCR of about 1%.
You may well be
Category: About CML

Replies: 4

Last updated: 11 October 2019
Tanya Cuffe on 12 September 2019

Category: Uncategorised

Replies: 13

Last updated: 11 October 2019

Non detectable-Yay!Now what?
by Felix (Oct 11)

Hi Alastair, my eyesight has changed slightly need reading glasses now they changed quite quickly after starting Dasatinib and I had only just had my eyes tested and there wasn't any change then

by AlastairC (Oct 11)

Denise great news. Any side effect issues?

by Mick E (Oct 11)

Bit of good news to brighten up a rainy day! 😁

by Tanya Cuffe (Oct 10)

That’s great Denise,and a relief for you!Am happy for you🙂Am going see Doc again in November,she was going to discuss me going to 20mg with her colleagues as she has never had anyone on that
Category: Uncategorised

Replies: 13

Last updated: 11 October 2019
Mick E on 11 October 2019

Category: Uncategorised

Replies: 2

Last updated: 11 October 2019

Discontinuation of 3rd Tki
by Mick E (Oct 11)

Thanks for the reply 😁
good to hear you are responding well!!👍🏻
it’s reassuring to hear it may not exacerbate heart/lung conditions!
hopefully they may start at lower dose if that option is

by cmljax (Oct 11)

Sorry to hear about this Mick. I started on 600 mg/day of nilotinib 3 years ago at Dx. While I had a slew of nasty side effects that led to 3 successive dose reduction to 150 mg/day,

by Mick E (Oct 11)

Hello to all 😁
I have now had to stop Dasatinib due to worsening cardio respiratory problems.
I had an undiagnosed problem prior to being diagnosed with luekemia which now looks like it
Category: Uncategorised

Replies: 2

Last updated: 11 October 2019
Cdonohue95 on 10 October 2019

Category: Treating CML

Replies: 2

Last updated: 10 October 2019

5 months with CML
by Cdonohue95 (Oct 10)

Thank you for that and I will deffently talk to my doctor. my question is how much the 50mg seems to be more effective then 70 or 100mg? They keep telling me that I am the youngest patient that they

by scuba (Oct 10)

Ask your doctor to lower your dose further to 50 mg - perhaps lower to 40 mg and monitor bcr-abl progress. There is excellent liklihood you will continue to trend lower (perhaps even faster than you

by Cdonohue95 (Oct 10)

Hello all.
My name is Chris, I was 23 when I was told the news. just a few months before my birthday. I am 24 now and had 240k WBC since then my WBC is floating between 4 to 6k. my latest BCR ABL as
Category: Treating CML

Replies: 2

Last updated: 10 October 2019
Nimbus2 on 10 October 2019

Category: Uncategorised

Replies: 2

Last updated: 10 October 2019

PROTAC
by kat73 (Oct 10)

Sounds great for those who stop responding to imatinib (or don't respond well initially), but then, we already have options of different TKI's for that. Of course, the more the merrier

by scuba (Oct 10)

Fascinating ...
I wonder if a natural "protac" mechanism can achieve the same thing:
https://www.ncbi.nlm.nih.gov/pubmed/16815497
This is the mechanism I believe may be at work when a

by Nimbus2 (Oct 10)

Has anyone heard of any PROTAC trials yet?
https://massivesci.com/articles/protac-cancer-melting-proteins-chronic-m...
A team of chemical biologists from Yale University and Oregon Health and
Category: Uncategorised

Replies: 2

Last updated: 10 October 2019
scuba on 1 October 2019

Category: Uncategorised

Replies: 14

Last updated: 10 October 2019

Every other day dosing can be successful (dasatinib)
by scuba (Oct 10)

Finding the best drug and ideal dose which works best is more art than science at this point in CML treatment. There are very few clinical studies being conducted in this area of dose matching to

by alison (Oct 10)

I am very interested in this thread and you all may be interested in my husband’s experience. Diagnosed 2012 (was very fit 68 y.o. At time of dx) with low disease load and became

by hannibellemo (Oct 4)

Karinne,
I had actually thought about that this summer. At that time I thought my option would be to go to bosulif and because its effectiveness for me was unknown I decided not to bring it up

by Karinne (Oct 3)

Dear Pat, so good to hear from you. And especially that your PE is reducing little by little. I like option 2 but what about stopping Sprycel for 2 months and hope that your lung would clear, now
Category: Uncategorised

Replies: 14

Last updated: 10 October 2019
WendyAR on 8 October 2019

Category: Uncategorised

Replies: 10

Last updated: 9 October 2019

New to CML Support
by kat73 (Oct 9)

Joan Rivers' Great Hair Day. Covers your bald spots (not for covering the gray hair roots).

by WendyAR (Oct 9)

Yes, mine are too but they were thinning before the Sprycel. I began working with a dermatologist a year before my CML diagnosis for thinning hair. Treatments seemed to be improving my situation but

by WendyAR (Oct 9)

Hello kat73. Thank you. I DO feel like I'm being brushed off. My doctor is an Oncologist/ Hemotolgist at NYU Perlmutter Cancer Center. My mom is a retired nurse practitioner who said, "you

by ColoradoGuy (Oct 9)

When I was taking 100mg Sprycel I did notice that my eybrows started to thin. I took some time before I noticed it but I would say it was related to the Sprycel as I had never had this issue
Category: Uncategorised

Replies: 10

Last updated: 9 October 2019