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vonnie on 16 May 2020

Category: Drug-drug interactions

Replies: 3

Last updated: 18 May 2020

amoxicillin
by David Fitz (May 18)

Amoxicillin is not the strongest of antibiotics around, so if it didn't work the first time it might not do much the second time for the same infection.
Amoxicillin and metronidazole are

by onekayaker (May 17)

Sometimes a stronger string of antibiotics are needed. This has happened to me in life life twice and the second one cleared me up. I was treated for respiratory infection and the Amox

by johnw1001 (May 16)

Hi,
Presume that you are on one of the tkis and that the mouth infection is related to a tooth.Amoxycillin is the standard approach from dentists for infections of the mouth.A while back I had

by vonnie (May 16)

Hi not been on for a while but would really appreciate if someone can tell me if i can take two courses of amoxicillin in a month as i had one prescription for a mouth infection but it doesnt seem
Category: Drug-drug interactions

Replies: 3

Last updated: 18 May 2020
onekayaker on 17 May 2020

Category: Uncategorised

Replies: 7

Last updated: 18 May 2020

Blue cheeses......
by David Fitz (May 18)

You'd want to ear a lot of pomegranate to cause a problem - there's a reason it's not on the patient insert leaflets. Seville oranges are very bitter, and you wouldn't want to eat

by onekayaker (May 17)

Hey David ,
I did see where someone pregnant is at risk. Feta was also on the lists of cheeses to avoid. I had been caving in on those cheeses so ergo this thread. I did know

by David Fitz (May 17)

It’s nonsense. We are perfectly able to eat those things.
People get freaked about food and CML - in my opinion it’s because if they feel they control what they eat or do not eat then

by onekayaker (May 17)

The strawberries are at their best. One covers the palm of my hand and deep red and juicy. Sugar is not needed. I took pictures and sent them to friends in WV.....they are
Category: Uncategorised

Replies: 7

Last updated: 18 May 2020
David Fitz on 17 May 2020

Category: Uncategorised

Replies: 0

Last updated: 17 May 2020

Chronic myeloid leukemia and the use of tyrosine kinase inhibitors in the days of COVID-19 pandemic
by David Fitz (May 17)

Very interesting journal letter that our friends at CML Advocates Network shared today.
It is short on data, but suggests that from what is known patients in chronic phase CML taking TKIs are not at
Category: Uncategorised

Replies: 0

Last updated: 17 May 2020
koralia.pappi on 12 May 2020

Category: Uncategorised

Replies: 11

Last updated: 17 May 2020

Undetectable!
by onekayaker (May 17)

Grats Kora!

Steff

by mamodei (May 14)

Wonderful news!
Maria

by koralia.pappi (May 13)

Thanks, snowman!

by snowman 35 (May 13)

That's wonderful news koralia!! I am so happy for you!
Category: Uncategorised

Replies: 11

Last updated: 17 May 2020
Rick B on 6 August 2018

Category: Uncategorised

Replies: 22

Last updated: 16 May 2020

Newly Diagnosed and Have to Already Stop Imatinib
by AlastairC (May 16)

Hi Sally; this was so long ago the other TKIs were not yet fully released. It was the way I was; imatinib hadn't caused the neutropenia.

by Sally Martin (May 14)

Thanks for your reply Alistair. Did you ever try a different drug to see if this would raise your neutrophils? My haematologist said that I’m someone who seems very sensitive to imatinib and

by AlastairC (May 12)

Sally, you'll find my history with WBC and neutrophils half way up this thread. One of the haematologists who investigated my WBC pre CML and my first CML consultant both said that low WBC is

by Sally Martin (May 12)

Hi there. I have been reading with interest the posts regarding imatinib and low neutrophils. I was diagnosed with CML last November. I had an initial optimal response to imatinib (400mg) but after
Category: Uncategorised

Replies: 22

Last updated: 16 May 2020
Sandrahervieux on 13 May 2020

Category: Treating CML

Replies: 6

Last updated: 16 May 2020

Side effect of Imatinib?
by kat73 (May 16)

Don't know how I missed this - sorry. Yes, yes, yes, to all your feelings and symptoms. I did, indeed, have them on imatinib. All comments you've received are great.

by Felix (May 13)

Hi Sandra ,I had most of those side effects plus really bad diarrhoea ,hooded eyelids and a rash.I thought that was just how it was going to be on Imatinib.Some did subside over time .I was changed

by johnw1001 (May 13)

Sandra,
I found the first six months after diagnosis to be quite challenging.The bone pain led to some sleepless nights but as one medic said to me the drug is doing its job and your bone marrow is

by AlastairC (May 13)

Hi Sandra, at 3.5 months a lot of the imatinib side effects (bone pain, fatigue etc), drop off to an acceptable level for many patients.Some have to change to another TKI. Despite these not being
Category: Treating CML

Replies: 6

Last updated: 16 May 2020
David Fitz on 14 May 2020

Category: Treating CML

Replies: 4

Last updated: 16 May 2020

Case report of CML and COVID-19, dasatinib (and imatinib) may be protective
by kat73 (May 16)

Now we're talkin"! All right! This would please me no end - we have a superpower!

by alexmcpee (May 14)

Very interesting read. I am on Nilotinib and as far as I understand very similar (more powerful) than imatinib. It did mention it against SARS in this doc too.

by Nimbus2 (May 14)

Thank you for posting, David. I understand that dasatinib is a broad-based kinase inhibitor. It appears here that the inhibiting of Abl1 and Abl2 pathways may be helpful. Perhaps it is early

by Dustylloyd (May 14)

Hi David,
in February this year my wife who I’ve been married to for 36 years was totally flattened by some virus and had to take 2 weeks off work, she was having really bad headaches, very
Category: Treating CML

Replies: 4

Last updated: 16 May 2020
vonnie on 16 May 2020

Category: Uncategorised

Replies: 0

Last updated: 16 May 2020

amoxicillin
by vonnie (May 16)

Hi not been on for a while but would really appreciate if someone can tell me if i can take two courses of amoxicillin in a month as i had one prescription for a mouth infection but it doesnt seem
Category: Uncategorised

Replies: 0

Last updated: 16 May 2020
jriccoboni on 12 May 2020

Category: Uncategorised

Replies: 4

Last updated: 15 May 2020

Dentist
by KeriF (May 15)

Can you require all of your patients to be COVID tested prior to treatment? Are you able to wear a PAPR or at least a fit tested N95 while at work? I’m asking because I don’t know

by Busaboy (May 13)

Hi, I'm not a dentist but I'm a repair tech i.e; schein, benco, patterson guy, and I've continued to work in mechanical rooms, work on op floors, handle equipment for the past 7 years with no

by jriccoboni (May 13)

In the US and I am the employer

by alexmcpee (May 12)

Hi if you are based in the UK you are in the high risk group and I doubt an employer would except you back anyway.
All the best
Alex
Category: Uncategorised

Replies: 4

Last updated: 15 May 2020
AlanG on 14 May 2020

Category: Uncategorised

Replies: 5

Last updated: 15 May 2020

Ponatinib for blast crisis
by AlanG (May 15)

Hello.
Thanks for the response, and good to hear that this drug works for someone else.
Regards,
Alan

by AlanG (May 15)

Dear Nicola,
There were no mutations detected, which my consultant said was good, but I wonder about that, as presumably it means that they don't know why I went into blast phase. IT was all

by nicolaclubb (May 15)

So sorry to hear you have gone into blast crisis. Do you know if it was due to a mutation?

Im currently on Ponatinib 15mg, due to mutation. I was previously on Nilotinib.

by ColoradoGuy (May 15)

I do know of someone who developed T315I and has been on Ponatinib for 7 years all around PCR 0.02.
Category: Uncategorised

Replies: 5

Last updated: 15 May 2020
Ontasigna on 10 May 2020

Category: Treating CML

Replies: 2

Last updated: 13 May 2020

Intermittent Fasting and acidity
by Ontasigna (May 13)

Thanks Scuba!

by scuba (May 10)

I have had zero acid reflux during fasting. I do get the "rumbles" as our bodies are trained to expect food at certain times of the day and begin secreting digestive enzymes in

by Ontasigna (May 10)

Hi Scuba
I have read many of your posts on intermittent fasting and its benefits.
I read an article which states- one of the side effect of IF is increase in stomach acid causing acid reflux and
Category: Treating CML

Replies: 2

Last updated: 13 May 2020
Tricky109 on 8 May 2020

Category: Uncategorised

Replies: 8

Last updated: 12 May 2020

Shielding (Sorry!)
by Tricky109 (May 12)

Thank you David I agree always best to be on the safe side.

by David Fitz (May 12)

Tricky one ... but it will never be 100% safe, so you need to work out your own risk tolerance.
My kids aren't school-age yet, but if the question to me was would I send them to nursery on the

by Tricky109 (May 10)

Thank you for your replies, can I add to my question? Im shielding until safe 100% what are your opinions on as I have 2 young primary age children when the goverment announce tonight schools

by Dustylloyd (May 10)

Just watched the video David recommended and as far as I’m concerned the thoughts of professor Steve o Brian nailed the questions of shielding, should I, shouldn’t i, like Steve says he
Category: Uncategorised

Replies: 8

Last updated: 12 May 2020
Kathrynk on 1 May 2020

Category: Side effects

Replies: 8

Last updated: 11 May 2020

Just diagnosed this week, wondering about side effects of desatinib
by lloyd152 (May 11)

Hi,
I'm sorry to hear you've been diagnosed with CML but hope you can take comfort from the stories on CML Support. I'm 32 and have been on Dasatinib since I was diagnosed at 21. I

by DanielSingapore (May 10)

I am 54 and I was diagnosed with CML (Advanced Phase) on Sept 2019 and have since been on Dasatinib.
I have also achieved Cytogenetic Remission in Feb/March 2020 and have commenced back at

by snowman 35 (May 2)

Everything is gonna be just fine! I think you will start at 50-75mg .keep us informed about your progress!

by KeriF (May 1)

Hi Kathryn, I was diagnosed a year ago at 29. It was a shock to me as well (especially since I had lost health insurance four days before but that’s a story for another day).
I haven’t
Category: Side effects

Replies: 8

Last updated: 11 May 2020
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