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Dustylloyd on 25 March 2020

Category: Uncategorised

Replies: 3

Last updated: 26 March 2020

High risk, moderate risk.
by alexmcpee (Mar 26)

Hey Peter, not at all. These are anxiety inducing times. I am not always calm it takes a lot of work haha. Stay safe and stay busy.
All the best mate
Alex

by Dustylloyd (Mar 25)

Hi Alex, thanks for your spot on reply, your comments on Cml Support group are always interesting and I probably need a dose of your calmness. Hope I didn’t come over as a “hothead

by alexmcpee (Mar 25)

I agree Peter. I am sorry if my other post caused anxiety. As I said to friend this eve “it’s as much accepting that our treatment is that good over accepting that CML is that bad

by Dustylloyd (Mar 25)

Hi everyone, I’m just trying to work out if I’m on my own in the belief that we may all have Cml in title, but, some of us will have good reactions,and some will have hiccups to
Category: Uncategorised

Replies: 3

Last updated: 26 March 2020
shelly on 19 March 2020

Category: Side effects

Replies: 6

Last updated: 25 March 2020

Can anyone help please stuck on Cruise Ship in Hawaii
by Felix (Mar 25)

Hi, been thinking about you ,how are you doing ,any developments.

by sandy craine (Mar 20)

That seems like a very high dose of dasatinib. Can you communicate with your husbands clinician by email?
Sandy

by Felix (Mar 20)

Hi Shelley ,most of us take 50 mg even 20 mg ,less is more ,but I don't know your husbands situation .It will be better I think to take a lower dose everyday than run out and not take any

by shelly (Mar 20)

Thanks Denise yep. We are in discussions re reduction.

We have another 60 days in Australia but can't seem to get it here. Even with commercial flights leaving from Sydney everyday till 22nd.
Category: Side effects

Replies: 6

Last updated: 25 March 2020
alexmcpee on 25 March 2020

Category: Uncategorised

Replies: 11

Last updated: 25 March 2020

Testing and results during COVID UK
by alexmcpee (Mar 25)

Completely understand Peter the situation certainly isn’t a joke. And this is only adding to our already “difficult” diagnosis.
I am sure things will go back to normal (well our

by alexmcpee (Mar 25)

Exactly thanks Sandie.

by sandy craine (Mar 25)

I am sure what your consultant meant was the 'nonsense' that CML patients who have a good response to TKI therapy (no matter what TKI) should not be included in the 'high risk'

by Dustylloyd (Mar 25)

Hi Alex, probably the whole situation is getting to me already, I need to calm down, but I read the situation like this, everyone is high risk, the corona virus isn’t bothered who gets it, but
Category: Uncategorised

Replies: 11

Last updated: 25 March 2020
Fillette on 20 March 2020

Category: Uncategorised

Replies: 3

Last updated: 25 March 2020

Imatinib and Coronavirus
by Richard (Mar 25)

I have had a few nasty diseases in my 70 years, but I have never had influenza. I may be one of those few, those lucky few, who are naturally immune to the Coronavirus family. I am also taking

by sandy craine (Mar 21)

Be cautious here. I asked about the general thinking on this and got this answer ...
" They used 10 uM of imatinib in their experiments. Probably an off-target effect and not clinically

by alexmcpee (Mar 20)

Wow that is super interesting. Only the other day I had the thought “I wonder if being on TKI blocks the way Coronavirus works” May be that’s fictional and not correct on my part

by Fillette (Mar 20)

I just found a scientific paper that suggests Imatinib may be effective in defense against Coronaviruses. It's not specific to COVID-19, but still
https://www.ncbi.nlm.nih.gov/pubmed/29557770
Category: Uncategorised

Replies: 3

Last updated: 25 March 2020
scuba on 19 March 2020

Category: Uncategorised

Replies: 9

Last updated: 24 March 2020

Coronavirus solution?
by teddyb (Mar 24)

"
However - if I am on my death bed and can't breath and I am offered Cholorquine - sign me up. Worth a try if nothing else is working and there is at least "some" evidence it

by scuba (Mar 24)

Chloroqine also is associated with eye retina detachments. Personally I avoided it after learning about its side effects when I was in Africa and switched to "deet". Thankfully I never had

by teddyb (Mar 24)

Found this to be very interesting, even though it was a limited study.
https://techcrunch.com/2020/03/19/french-study-finds-anti-malarial-and-a...
https://www.cdc.gov/coronavirus/2019-ncov/hcp/

by scuba (Mar 24)

Overdosing on just about any drug can poison you. Our own TKI's are very toxic. Overdosing on them can poison you as well. Taking non-pharmaceutical grade drugs like fish tank cleaner* is also
Category: Uncategorised

Replies: 9

Last updated: 24 March 2020
Jacqueline Allmark on 23 March 2020

Category: Drug-food interactions

Replies: 4

Last updated: 24 March 2020

Drug interactions
by Nimbus2 (Mar 24)

I was taken off simvastatin on the day of diagnosis and had this replaced by pravastatin. My consultant was not keen on statins but delegated the decision to the GP.

by johnw1001 (Mar 23)

You need to think about going on to Candesartan if you wish to avoid any interaction between the tki and the statin;with all the other statins the tki increases the uptake and effect of the statin

by Jacqueline Allmark (Mar 23)

Thank you Chrissie I will speak to my GP Keep well

by chrissie (Mar 23)

Hi Jacqui
I was on simvastatin some years ago ( as well as imatinib). I had dreadful pain on the soles of both feet for about 2 years - like walking on broken glass. I was tested for neuropathy,
Category: Drug-food interactions

Replies: 4

Last updated: 24 March 2020
Kosmo126 on 23 March 2020

Category: Side effects

Replies: 1

Last updated: 24 March 2020

Post Viral Syndrome
by sandy craine (Mar 24)

It may be that you have developed Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS).
According to information about ME/CFS on the NHS inform website:
'It’s estimated

by Kosmo126 (Mar 23)

I was diagnosed 14 years ago with CML and came off Glivec, (courtesy of Destiny Trial), four years ago. Since diagnosis in 2006, I have been experiencing a very odd thing which I absolutely
Category: Side effects

Replies: 1

Last updated: 24 March 2020
johnw1001 on 23 March 2020

Category: Organising your life

Replies: 0

Last updated: 23 March 2020

Register for Corona virus support as an extremely vulnerable person
by johnw1001 (Mar 23)

I have just registered for corona virus support as being extremely vulnerable-the government site i is now up and it will help if you know your NHS number. There may be separate registration
Category: Organising your life

Replies: 0

Last updated: 23 March 2020
johnw1001 on 22 March 2020

Category: Organising your life

Replies: 4

Last updated: 22 March 2020

Major new measures to protect people most at risk from Corona Virus
by scuba (Mar 22)

Perspective on flu vs Covid-19
https://www.livescience.com/new-coronavirus-compare-with-flu.html
https://www.the-scientist.com/news-opinion/scientists-compare-novel-coro...
"The new coronavirus

by johnw1001 (Mar 22)

Hi Diane,
I am not sure of what the precise advice would be but if one you was infected with the Corona virus then I am sure that the strict isolation procedures and the separate living arrangements

by Diane CW (Mar 22)

I am currently working from home and not going out. I live with my husband and we are keeping our distance from one another at all times. We now have separate bedrooms and bathrooms and he goes out

by Dustylloyd (Mar 22)

Hi John, I finished work last Tuesday morning on the advice of my manager, and placed myself on 14 days self isolation, on Friday I was informed by my works I would more than likely be on 12 weeks
Category: Organising your life

Replies: 4

Last updated: 22 March 2020
Karthikeyan on 19 March 2020

Category: Uncategorised

Replies: 3

Last updated: 22 March 2020

Anyone taking just 150 mg nilotinib per day.please share details
by cmljax (Mar 22)

Yes. I have been on 150 mg per day since Sep 2017, so 2 1/2 years now. I was Dx in Sep 2016 and started on 300 mg 2x per day or 600 mg total. I started reducing 150 mg at a time in

by Karthikeyan (Mar 20)

Hi

Anybody taking nilotinib 150 mg per day more other 1 year.

by nicolaclubb (Mar 19)

Hi
I was taking Nilotinib 150mg once a day from October 19’ till 5 weeks ago.

I found that most of my side effects went or subsided. I found it a lot easier to fast

by Karthikeyan (Mar 19)

Hello everyone,at present im taking 300 mg nilotinib per day.is there any chance that i would reduce it to 150 mg per day.if someone is taking is taking only 150 mg per day please share your
Category: Uncategorised

Replies: 3

Last updated: 22 March 2020
Karthikeyan on 20 March 2020

Category: Uncategorised

Replies: 1

Last updated: 21 March 2020

Is changing drugs normal.question to scuba.
by scuba (Mar 21)

Your doctor is incorrect. Changing drugs - even rotating TKI's (start with one drug, change then rotate back) has been shown to provide deeper remission than one drug alone. Theory on this is

by Karthikeyan (Mar 20)

Hi scuba and others.im taking nilotinib for for two years.i asked my onco about changing to dasatinib.he said exposing to different drugs is not good.just want to go with nilotinib since im taking
Category: Uncategorised

Replies: 1

Last updated: 21 March 2020
sandy craine on 17 March 2020

Category: About CML

Replies: 7

Last updated: 21 March 2020

NCRI CML Subgroup Recommendations re: COVID-19
by Crfharris (Mar 21)

Very understandable. I’m just nine months from diagnosis; it’s all still new and rather confusing at times. This site has been most informative. Thank you.

by sandy craine (Mar 21)

Just to try and be as clear as possible in what is a very confusing time for all of us. There may be a difference between 'medical opinion' about the risks of infection with CV-19 for

by Crfharris (Mar 21)

This is very interesting. My oncologist is Dr. Harry Erba at Duke University in North Carolina; his name is mentioned frequently in the research articles posted at this site. He said that CML does

by Nimbus2 (Mar 20)

Thank you, Sandy.
At my GP's Patient Online Service, the following has been added to my record:
Coded entry High risk category for developing complications from COVID-19 infection (Y228a)
I
Category: About CML

Replies: 7

Last updated: 21 March 2020
Trevorp93 on 21 March 2020

Category: Treating CML

Replies: 1

Last updated: 21 March 2020

Need advice on treatment!
by Felix (Mar 21)

Hi ,with those results which are brilliant ,no way would I take that dose ,there is no need for it .When I changed from Imatinib to Dasatinib my Doc wanted me to start on 100 mg but I said no way

by Trevorp93 (Mar 21)

Hi everyone! I had two question regarding treatment.
First. Does anyone know the effects of being on 140 mg Sprycel for long periods of time?
Second I had questions of why I was put on such a
Category: Treating CML

Replies: 1

Last updated: 21 March 2020
johnw1001 on 18 March 2020

Category: Drug-drug interactions

Replies: 3

Last updated: 20 March 2020

Avoid ibuprofen
by johnw1001 (Mar 20)

In response- the source of my information is the research that was undertaken at University of Adelaide -"Contrasting Effects of diclofenac and ibuprofen on active imatinib uptake into

by Nimbus2 (Mar 20)

I asked my local village pharmacist a question concerning my use of dasatinib. To my surprise, he telephoned me early one morning and discussed drug interactions for about 20 minutes. He talked

by Jacqueline Allmark (Mar 20)

Does the same apply to naproxen I take it for osteoarthritis

by johnw1001 (Mar 18)

Currently there is a debate as to whether those who develop a fever either via Corona Virus or seasonal flu take Paracetomol often known as Acetimenophin or Ibuprofen/neurofen. The latter is an
Category: Drug-drug interactions

Replies: 3

Last updated: 20 March 2020
scuba on 17 March 2020

Category: Uncategorised

Replies: 8

Last updated: 20 March 2020

CML personal update
by Jacqueline Allmark (Mar 20)

Should I request immunisation against pneumonia from my GP I had flu vaccine last year I had this thought as Corona virus symptoms can develop into a bacterial pneumonia immunisation might be useful

by onekayaker (Mar 18)

Excellent! I will be following your progress. When stop your tki I hope the withdrawls are slim to none. Such a low dose hoping for zero issues.
Steff

by Vijay Kumar Verma (Mar 18)

Hi SCUBA ,I really loved ur Phd's and upper &bottom one.wisdom coated in humor.wishing u health & happiness .you have transcended from the plane of knowledge to wisdom.keep it up,waiting for

by Felix (Mar 18)

Hi Nimbus ,yes I remember it very well being on Imatinib,what a nightmare that was ,I couldn't go out anywhere without taking our friend Imodium.Dasatinib is so much better ,take care and Keep
Category: Uncategorised

Replies: 8

Last updated: 20 March 2020
shelly on 19 March 2020

Category: Side effects

Replies: 0

Last updated: 19 March 2020

Can anyone help please stuck on Cruise Ship in Hawaii
by shelly (Mar 19)

Hi all

Husband is on 140mg sprycel per day.

We have been stuck on this cruise ship for 3 weeks and not allowed into any ports on the Norwegian jewel. We are on route to Hawaii now but
Category: Side effects

Replies: 0

Last updated: 19 March 2020
onekayaker on 18 March 2020

Category: Uncategorised

Replies: 0

Last updated: 18 March 2020

Question about magnesium
by onekayaker (Mar 18)

I was on bestvite's website comparing prices to order some vits and I saw magtein magnesium L-threonate. Higher price. Anyone use this or just regular magnesium supplements? I
Category: Uncategorised

Replies: 0

Last updated: 18 March 2020
mahamud41 on 15 March 2020

Category: Side effects

Replies: 1

Last updated: 17 March 2020

Dasatinib and Pulmonary Hypertension
by sandy craine (Mar 17)

You could contact the Max Foundation and ask if your brother qualifies for assistance/advice with access to nilotinib or bosutinib.
Sandy

by mahamud41 (Mar 15)

Hellow, I am Dr Mahamud from Bangladesh.

My 21year old younger brother is sufferi g from CML from 2009. He is facing following problem regarding his treatment.
1)Imatinib(Gleevec) was
Category: Side effects

Replies: 1

Last updated: 17 March 2020
Dustylloyd on 16 March 2020

Category: Uncategorised

Replies: 6

Last updated: 17 March 2020

Corona virus
by sandy craine (Mar 17)

Please read the current advice from NCRI CML Subgroup pinned at the top of this page which I will update later today. We are certainly entering an era of profound behavioural change. There will be

by MLD (Mar 17)

Hi, I'm a newcomer to the forum! My husband has had a MMR for nearly eight years now, but obviously we were very concerned when we saw the advice last night, as he's also a teacher! We

by Dustylloyd (Mar 17)

Just to say a massive thanks to you all for giving me your take on this strange, stressful situation every one is in, but yesterday’s broadcast by are prime minister with his advisers when

by scuba (Mar 16)

As a free society where our freedoms have long been tested by enemies we can see, it is hard to fight against an enemy you can not see. The Caronavirus is not new in and of itself. We have been
Category: Uncategorised

Replies: 6

Last updated: 17 March 2020
BDT on 29 February 2020

Category: Uncategorised

Replies: 13

Last updated: 15 March 2020

Recently Diagnosed
by Jacqueline Allmark (Mar 15)

Has anyone else got debilitating mouth and throat ulcers?

by Patch (Mar 13)

Hi Pigeon.
Thank you for your reply and the extra advise. Its great having this site to be able to connect to people who are helping one another with all this help, advise and support. I like other

by Sunny (Mar 8)

Hello Patch,
As far as I know, pomegranate is also prohibited to consume for us CMLers, same as grapefruit.
I was told so by both my CNS and oncologist.
Other 'prohibited' fruits are Seville

by Patch (Mar 8)

Hi,
I am 65 and was diagnosed in August 2017 I was advised by my consultant to take imatinib Accord 400mg x1 a day at the same time with food and a pint of water, to also stand up for 30 minutes so
Category: Uncategorised

Replies: 13

Last updated: 15 March 2020