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yowandbm on 28 February 2020

Category: Reproductive health

Replies: 9

Last updated: 10 May 2020

Stopping nilotinib treatment, fathering on nilotinib
by yowandbm (May 10)

I listened to the presentation, it is a valuable resource for patients.
Once more I see that my case is too specific as no patients as myself were selected for any of the studies.
I concluded that

by cdw5000 (May 9)

I'm currently on 150mg twice per day.
When my first child was conceived I was on 300mg twice per day.
I reduced my dose in half due to very low and stable PCR results - maintained a MMR4+ on 1/2

by Karthikeyan (May 8)

Hello cdm5000, please share your dose details.

by AlastairC (May 7)

Suggest you watch this presentation by Prof Clarke at the CMLSG patient day 2019. Most up to date info on options for stopping treatment. His previous papers convinced me to follow the Destiny Trial
Category: Reproductive health

Replies: 9

Last updated: 10 May 2020
philmc on 5 May 2020

Category: Treating CML

Replies: 6

Last updated: 8 May 2020

Not responding quickly enough – switch TKI?
by philmc (May 8)

Thanks all for your responses. Very useful to hear about your experiences.

by Tbrand (May 7)

I like Imatinib, it’s the first CML agent. People have been on imatinib over 20 years without issues. If it works for you without side effects, why change? Your almost there! Plus the price is

by israel (May 6)

I take Imatinib and also didn’t reach the optimal standards in the first two years after diagnosis. Long story short, in the first two years I was feeling very well with little to no side

by sandy craine (May 6)

Hi Phil,
There are many people who do not reach 'optimal' PCR ratios at 3; 6 or 12 months, yet they often go on to respond 'optimally' in the end, but it takes them a little more
Category: Treating CML

Replies: 6

Last updated: 8 May 2020
POPPY on 5 May 2020

Category: Treating CML

Replies: 2

Last updated: 5 May 2020

Lowered Dose Dasatinib 70mg
by scuba (May 5)

Hi Alex,
It is not that lower dose dasatinib is "more effective" per se. It is that each of us who are prescribed dasatinib have a unique dose threshold beyond which more is not more

by alexmcpee (May 5)

Their is a lot of evidence that lower dose Dasatinib is more effective. It sounds counter intuitive but from what I understand it is a threshold drug so you will no doubt see better results on lower

by POPPY (May 5)

Hey All,

I've written on another thread before.
My boyfriend switched to Dasatinib (prev Nilotinib) in Feb 2020.
Below are his bcr abl counts:
Dec 2019 - 0.05%
Mar 2020 - 0.10% (on
Category: Treating CML

Replies: 2

Last updated: 5 May 2020
teddyb on 3 February 2020

Category: Treating CML

Replies: 13

Last updated: 5 May 2020

Going from Imatinib to Sprycel
by yowandbm (May 5)

Philip,
After BMT I developed serious hemorrhagic gastritis on Sprycel. Dr told me this is a common issue with it.
Discuss on it thoroughly.

by Ray Sell (May 4)

Hey Phillip How long were you on imatinib, and what dose? What dose Sprycel are you on? Blood draw was today, and results in 2 weeks. Thinking I might change to Sprycel. Oncologist

by teddyb (May 2)

My first Sprycel results are back, after switching from 400mg Glivec to 50mg Sprycel
Month ABL1
1 76
2 17
3 3
6 0.1
9 0.02
12 0.03
15 0.04
18 0.01
21 0.

by scuba (Feb 20)

Ray - it's good you increased your vitamin D level. You started out where I did - 16 ng/ml.
Looking at your numbers, my thinking is you are at a plateau and switching to sprycel could very well
Category: Treating CML

Replies: 13

Last updated: 5 May 2020
shayner on 14 April 2020

Category: About CML

Replies: 7

Last updated: 5 May 2020

GP letter and blood testing advice please!
by nilotinib (May 5)

Hello,I was out and about doing all the normal things before the lockdown. I must admit that I used to get a lot of colds before I started with CML .Now I rarely catch colds and flu.
Keith

by shayner (Apr 14)

Peter thanks so much for coming back on that, I think you are spot on and makes total sense that you’ve had such a time of getting over infections - you’ve sure had more than your fair

by Dustylloyd (Apr 14)

Hi Shayner, felt I had to come back to you on your reply to Alex, I totally agree with you about the non high risk of Cml, in the 5 years since my diagnosis I have had 2 stays in hospital once with

by shayner (Apr 14)

Hi Alex, thanks for sharing your situation - bloods is always a nightmare around holidays. I always fall due on New Years Day - those bloods are not representative of my usual composition! What a
Category: About CML

Replies: 7

Last updated: 5 May 2020
sandy craine on 14 April 2020

Category: Other conditions

Replies: 4

Last updated: 5 May 2020

COVID-19 symptom tracker - you can use this to help collect data
by nilotinib (May 5)

Hello, I have been using this app for a few weeks and it does reassure you. So far both myself and my wife have free from the virus, as far as I know.
Keith

by sandy craine (Apr 21)

COVID Symptom Tracker Science Update
Webinar
Doctors and clinical researchers Claire Steves and Tim Spector share an update on the insights they're learning from COVID Symptom Tracker and

by sandy craine (Apr 15)

Try this... https://covid.joinzoe.com
You can also go to the home page and click on the first feature box
Sandy

by Dennis (Apr 14)

Link doesn’t work for me Sandy.
Category: Other conditions

Replies: 4

Last updated: 5 May 2020
nilotinib on 1 May 2020

Category: Uncategorised

Replies: 8

Last updated: 5 May 2020

Appointment and blood tests
by nilotinib (May 5)

Hello , I have just been watching the corona virus update on TV and it was said when the lockdown is eased that we the 1.8 million most vulnurable must stay in even longer to be protected.
What do

by AlastairC (May 5)

I'm 20 months into TFR. Due to have bloods taken and see consultant Wednesday 13th. Text message yesterday to say it will be a telephone consult and not to come to hospital. Fine with the phone

by nilotinib (May 4)

Hello and thank you Sandy for putting my mind at ease.
I will get my bloods both my samples at once,even though the molecular response will not be available to my consultant.
I still have a few

by sandy craine (May 3)

I am sure your clinic will be taking the necessary precautions when taking bloods. Your white cell count is in normal range and you have a DMR (Deep Molecular Response). If you are very worried
Category: Uncategorised

Replies: 8

Last updated: 5 May 2020
Judithmary on 29 April 2020

Category: Uncategorised

Replies: 5

Last updated: 4 May 2020

Should I work during this lockdown
by MLD (May 4)

My other half has CML and received the NHS letter but he's still working. He's been in MMR for eight years with a BRC-ABL of 0.001% and when we spoke to his consultant she said he was low

by KeriF (May 2)

I am a nurse anesthetist in a relatively hard hit area and working on the front lines. I have intubated many patients with COVID. I haven’t taken any time off. Granted, I always have full PPE

by Judithmary (May 1)

That’s terrible. I am sorry to hear that.
I’ve just had another letter saying shield till July 24 ! It’s not from my consultant so I’m going to try and get in touch with

by Ade (Apr 30)

Hi I've been diagnosed 18 months now and I'm self employed as a motorcycle mechanic. I've had no choice but to go to work during this lockdown even if it's just to sit in an empty
Category: Uncategorised

Replies: 5

Last updated: 4 May 2020
Hannah Geddes on 26 April 2020

Category: Side effects

Replies: 5

Last updated: 3 May 2020

FATIGUE!
by alexmcpee (May 3)

Thank you very much. It feels like a long time coming hopefully the 2 year mark will put me there!

by Karthikeyan (May 3)

Hi alex, i wish you good luck. i hope your pcr result will put you in mmr this time. hannah, if we take high dose of tki,fatigue will be part of our life.

by alexmcpee (May 3)

Hey Hannah
I should have the result on the 22nd of May. I can’t say you ever get used to worrying about tests but they are there for our protection I tell myself over and over. Hopefully

by Hannah Geddes (Apr 30)

Hey Alex,
so nice to hear from you. Wow MMR.. I love those words! When will you find out?
Im exactly the same, even as soon as I wake up I feel like I haven't even slept and i'm in
Category: Side effects

Replies: 5

Last updated: 3 May 2020
SarahHarrington on 8 March 2020

Category: About CML

Replies: 6

Last updated: 3 May 2020

Eye bleed - has anyone had a similar issue?
by SarahHarrington (May 3)

Thank you very much for your responses. His eyes have cleared now luckily and he can read again. It took a few weeks to clear this time though! Hope all are keeping safe.

by bendicco (May 2)

Yes, I have had eye blood spots covering the entire white of my eye 2 times since on Gleevec. Looks really freaky but resolves itself in a few days.

by AlastairC (Mar 14)

During the 11 years I was on 400mg imatinib, I guess I had about one eye bleed a year; they all resolved themselves w/out any loss of vision within a couple of weeks. Have not had one since I

by Edward Cooper (Mar 10)

Sarah,
Just to recount my experience of eye bleeds into the white of the eye (sub-conjunctival haemorrhage), I have had these to both eyes over a long period (since 2012) but the occurrence
Category: About CML

Replies: 6

Last updated: 3 May 2020
kat73 on 1 May 2020

Category: Uncategorised

Replies: 2

Last updated: 2 May 2020

Has anybody on this forum actually gotten COVID-19?
by kat73 (May 2)

Hi, Scuba - Happy to hear of your friend's experience, but I'd really like to hear from any of us with CML on TKIs who have had it.

by scuba (May 2)

I know of only one person (friend) who had Covid-19. He was in France beginning of the year and came back with the infection.
He thought it was a flu and was "bed ridden" for 3-5 days

by kat73 (May 1)

. . . and lived to tell the tale? I would be very curious and interested to hear the details.
Category: Uncategorised

Replies: 2

Last updated: 2 May 2020
gbatalha on 29 April 2020

Category: Blood tests

Replies: 3

Last updated: 29 April 2020

BCR ABL 24 Months
by scuba (Apr 29)

This is why blood testing is so important, because it can guide you how much vitamin D you need on a personal basis. I presume you meant "IUs" daily.
To double your blood level (from 30

by gbatalha (Apr 29)

4000 DUs daily.
My levels are at low 30s ng/ml with the daily supplement.
PS - My skin is very dark, quasi-northern african

by scuba (Apr 29)

How much vitamin D3 do you take per day? Do you know your vitamin D blood level?

by gbatalha (Apr 29)

Hi everyone,
Just wanted to share my recent results to give everyone some level of comfort around variations of BCR-ABL levels (42 years old/400mg Imatinib daily/low risk at diagnosis):
12M - 0,150
Category: Blood tests

Replies: 3

Last updated: 29 April 2020
sandy craine on 14 April 2020

Category: About CML

Replies: 1

Last updated: 29 April 2020

Expert Opinion from the NCRI CML Subgroup, updated 23rd March 2020
by sandy craine (Apr 29)

EHA: Recommendations for specific hematologic malignancies
https://ehaweb.org/covid-19/covid-19-recommendations/recommendations-for-specific-hematologic-malignancies/
CML, TKI treatment and COVID-19

by sandy craine (Apr 14)

The latest UK government updates are listed here:
https://www.nhs.uk/conditions/coronavirus-covid-19/ and https://www.gov.uk/government/publications/covid-19/guidance
According to the above
Category: About CML

Replies: 1

Last updated: 29 April 2020
Sd on 27 April 2020

Category: Side effects

Replies: 2

Last updated: 28 April 2020

Propolis
by Sd (Apr 28)

Thanks Vicky. I am going to try it in my mouth. I will post my results.

by VickyK. (Apr 28)

Hi SD,

I don't know much about propolis but I use a propolis spray when I have sore throat and I haven't faced any problem so far. By the way I'm on nilotinib.

Take care,

Vicky

by Sd (Apr 27)

I have been having problems with stomatitis since late January. When I am off the imatinib, they subside. I really do not want to change drugs because the imatinib is working so well with my
Category: Side effects

Replies: 2

Last updated: 28 April 2020
Aeje10327 on 27 April 2020

Category: Uncategorised

Replies: 4

Last updated: 28 April 2020

Sprycel Reduction Question
by Tater1 (Apr 28)

Hi
Sorry I should have mentioned the name. I’m in N.J. and now see Dr Mauro at Memorial Sloan Kettering.

wishing you all the best!
Renee

by Aeje10327 (Apr 28)

I hope your numbers continue to drop on the lower doses. 3% is great. I was at 11% after 3 months.
Where do you get your care if you don't mind me asking? Are you in the US by any chance?

by Tater1 (Apr 28)

Hi.
I was diagnosed November 2019 and started on 100mg sprycel. My counts tanked and I had to stop taking it for several weeks, then was put back on 70mg. Again I was severely

by scuba (Apr 27)

Your doctor is misinformed.I was started at 70 mg initially and dropped to 20 mg after a week where I remained for many years. There is a great deal of data on sprycel efficacy at lower dose. In
Category: Uncategorised

Replies: 4

Last updated: 28 April 2020
scuba on 26 April 2020

Category: Uncategorised

Replies: 1

Last updated: 28 April 2020

On Switching to dasatinib from imatinib
by Nimbus2 (Apr 28)

Thank you, Scuba, for this. I am not sure how an "early switch" is interpreted in the context of the article. I am nervously awaiting the results of my shift from imatinib to dasatinib.

by scuba (Apr 26)

https://www.oncnet.com/news/early-switch-dasatinib-first-line-imatinib-m...
"Early Switch to Dasatinib From First-Line Imatinib May Benefit Patients With Ph+ CML"
Results reinforce the
Category: Uncategorised

Replies: 1

Last updated: 28 April 2020
Barbs on 30 January 2018

Category: Uncategorised

Replies: 12

Last updated: 28 April 2020

Zavie Millers zero Club
by Barbs (Apr 28)

Hello! did you manage to find your number? what's your name, maybe i could find it for you...

by Richard42 (Apr 25)

I’ve sent you a message directly. Thanks Barbs.

by Barbs (Apr 24)

hello. Did you find your number? maybe I have it listed; but I'd need your name

by Barbs (Apr 24)

Thanks for sharing this info.
Category: Uncategorised

Replies: 12

Last updated: 28 April 2020
Ontasigna on 27 April 2020

Category: Drug-drug interactions

Replies: 2

Last updated: 27 April 2020

Nilotinib | Multi vitamin and Minerals | Interacction
by alexmcpee (Apr 27)

Pineapple is fine. Just avoid grapefruit. In terms of vitamins many do take them. I try to get as much from food as possible although the vit d is harder. I eat eggs and the suns been out so need

by ColoradoGuy (Apr 27)

I am taking all of the above and have seen drops in BCR/ABL so I think it is fine. Not a lot of research done on my part so if you find out that it is a bad idea please post. I think it

by Ontasigna (Apr 27)

Hi All.,
Is it ok to take Multivitamin (A, B, C , Zinc, Magnesium etc) while on nilotinib? any interactions?
secondly, Is it ok to consume pineapple?
Category: Drug-drug interactions

Replies: 2

Last updated: 27 April 2020
POPPY on 17 December 2019

Category: Uncategorised

Replies: 19

Last updated: 26 April 2020

Poor Response in Nilotinib
by POPPY (Apr 26)

Hey All,
It's been 2 months since he switched from Nilotinib to Dasatinib 100mg. It's much more tolerable than Nilotinib.
We received his blood results and his platelets had gone down further to 59

by ColoradoGuy (Apr 11)

Well I think a month may not be long enough to make a determination but if it does turn out that Dasatinib does not work for him I would keep in mind that he reached MMR on Nilotinib and try to find

by POPPY (Apr 11)

After over a month of 100mg Dasatinib, his platelets decreased from 100+ to 82. With an increase in PCR and decrease in Platelets after a month on Dasatinib, could this be a sign of disease

by ColoradoGuy (Apr 7)

I believe that is a half log increase and the upper limit of lab error. It would be interesting to note whether he took any time off between medications while waiting for the next to arrive.
Category: Uncategorised

Replies: 19

Last updated: 26 April 2020
pat preston on 12 December 2009

Category: Uncategorised

Replies: 4

Last updated: 26 April 2020

More ideas for Nice petition
by Barbs (Apr 26)

Hello Pat am trying to contact all the members of Zavie's zero club

by annette ward (Dec 13)

One idea I had, is to send the website address for the e petition on a slip of paper with all my Christmas cards to friends, as this is a way to reach more people and get them to sign up.
My Mum has

by sandy craine (Dec 13)

Dear All,
I have arranged with Pat to send some text for her to use as we agreed to use the signatures to support our letter to the DH ministers.

However I am sure the same signatures could be

by Pesty (Dec 12)

Hi Pat, Thanks for all your work!
I have just taken a look at the e-petition site and you can still submit paper signatures under the same petition - see below. It may add weight if we use the same
Category: Uncategorised

Replies: 4

Last updated: 26 April 2020