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sandy craine on 20 December 2020

Category: Treating CML

Replies: 8

Last updated: 29 January 2021

Meet-the-expert Q&A Session- 27th Jan 2021
by sandy craine (Jan 29)

Details/timelines are included in the original post
You can send a question before the webinar via iCMLf email contact... see below.
Sandy
https://us02web.zoom.us/j/84715783748
Meeting-ID: 847

by mil (Jan 27)

Hi, what time is for USA? Thank you!

by sandy craine (Jan 24)

Hi Marion,
I think you need to put your question on a different thread. This thread is only to give the links for you to log in and join the ICMLF expert Q&A session 27th January. If you join

by ruel (Jan 23)

Hi marion,

Can i ask if you dont mind,what time you take your medicine? Is it with empty stomach or with foods??
Thnks
Category: Treating CML

Replies: 8

Last updated: 29 January 2021
daniellaw on 25 January 2021

Category: Uncategorised

Replies: 11

Last updated: 28 January 2021

Covid vaccination group
by daniellaw (Jan 28)

Just a quick update. I've now got an appointment for my vaccination on Saturday 6th Feb.

by alexmcpee (Jan 27)

Thats great peter! I believe by definition we should be in group 4 but I see how GPs could get confused if we've had a decent long term response to TKI. I am hoping I get the call anyday now too

by Dustylloyd (Jan 26)

Hi Daniella
just a quick update on vaccine situation in my area, yesterday I checked and could see confusion in categories, which,to a few of us from some of the departments we were in group 6 and

by daniellaw (Jan 26)

Thank you Richard. I've just a few minutes ago had confirmation from my GP that I was in the wrong category and they have now moved me to group 4 so hopefully I will be contacted in the next
Category: Uncategorised

Replies: 11

Last updated: 28 January 2021
EvaH on 11 January 2021

Category: Uncategorised

Replies: 13

Last updated: 28 January 2021

In praise of getting CML
by alexmcpee (Jan 28)

Hi Janet
Sorry to hear of your double diagnosis!
I can relate 100% to pulling on your mindfulness and meditation practice. I’ve been doing so myself since the day I got diagnosed which is nigh

by Janet Treble (Jan 27)

I was diagnosed with CML on Friday 13th November 2020, a date I will never forget especially as I was hospitalised on that day with Covid-19, a double whammy!
I am still in the early days/weeks/

by Richard42 (Jan 21)

I see many similarities between me, Eva, CM-elon and Alex. I was also 42 when diagnosed, with two young children. My initial concern was not seeing them leave school but that passed over time

by alexmcpee (Jan 19)

When I was diagnosed I almost told myself immediatley that CML was either going to be the worst or the best thing to have happened to me. (Weird but stick with me)... I told myself this is going to
Category: Uncategorised

Replies: 13

Last updated: 28 January 2021
vonnie on 26 January 2021

Category: Uncategorised

Replies: 2

Last updated: 28 January 2021

covid/vaccination
by David Fitz (Jan 28)

Hey Vonnie,
Similar to you, I felt a bit off colour for 24-48 hours but all quickly back to normal.
Bring on the second dose!
David.

by alexmcpee (Jan 27)

Yeah my dad had the same symptoms as you mention especially the headache the eve he got the jab.

by vonnie (Jan 26)

Hi posted yesterday how brill it was having the vaccination yesterday but i must be honest i did experience some side effects last night as they say you might on the information sheet they give you.
Category: Uncategorised

Replies: 2

Last updated: 28 January 2021
vonnie on 25 January 2021

Category: Uncategorised

Replies: 3

Last updated: 26 January 2021

covid/vaccination
by Richard42 (Jan 26)

Had mine on Friday. Sore/tender arm for a day or two - as with many vaccines - but nothing else and I didn’t expect more than that either, to be honest. Pfizer vaccine.

by Diane CW (Jan 26)

Hi Vonnie
Thank you for your reassuring post, I live in the south west and am expecting my call soon.
I’ve been feeling quite anxious about getting the jab and any possible effects afterwards

by alexmcpee (Jan 26)

Nice one Vonnie!
Still waiting to get the call down here in Kent (southeast). Should be anyday. I am so impressed with the speed of the rollout. We should see a change in the reported numbers come

by vonnie (Jan 25)

Hi everybody no problems this time just want to say i had my first covid jab today and want all to know incase there any doubters out there it was a dawdle no pain no side effects so please when you
Category: Uncategorised

Replies: 3

Last updated: 26 January 2021
sandy craine on 25 January 2021

Category: Other conditions

Replies: 1

Last updated: 26 January 2021

Vit D - new thread- Your Bones & Muscles Need Vitamin D
by Sunny (Jan 26)

Thank you Sandy for this informative article. Yes, Vit D RULES!

by sandy craine (Jan 25)

Given the number of posts about fitness and exercise issues and the ongoing effects TKI therapies I thought this article may be helpful. Optimal levels of Vit D3 is not only good for the immune
Category: Other conditions

Replies: 1

Last updated: 26 January 2021
ruel on 19 January 2021

Category: Uncategorised

Replies: 3

Last updated: 25 January 2021

Pleural Effusion
by Buzzm1 (Jan 25)

Thinking, especially considering your low PCR level, that your onc/hema would be amenable to lowering your Sprycel dose to 50mg, Lowering your dosage is key in dealing with pleural

by johnw1001 (Jan 20)

Hi
From your posting it would appear that your response to imatinib was poor and that you were then put directly on to ponatinib which is a last line drug and also which shows up some nasty vascular

by scuba (Jan 19)

https://www.sciencedirect.com/science/article/pii/S2152265016305687

by ruel (Jan 19)

Hi all,
I'm currently 54 yrs old. I initially took Imatinib then Ponatinib but both of them didn't work.
Right now I'm taking Sprycel (100mg) for about 2yrs now but my doctor
Category: Uncategorised

Replies: 3

Last updated: 25 January 2021
David787 on 21 January 2021

Category: Side effects

Replies: 11

Last updated: 25 January 2021

Side Effects?
by David787 (Jan 25)

Sorry Alastair, that last reply was for you!
David

by David787 (Jan 24)

Good to hear from you John, thanks for sharing your Imatinib and side effects journey.
It sounds as though you recovered really well. If I can get back into some decent walking I shall be well

by AlastairC (Jan 24)

Hi David
I started on 400 mg imatinib in 2007 aged 50. Early bone pain etc. died down after around 6 months, and fitness was pretty much back on track inside a year. I got back to playing inter club

by David787 (Jan 23)

Hello John
Thanks for your reply. It's very heartening to know that you have been taking Imatinib for 15 years, and are able to exercise so well. I certainly went through the muscle and bone
Category: Side effects

Replies: 11

Last updated: 25 January 2021
Lavinia on 14 January 2021

Category: Side effects

Replies: 4

Last updated: 25 January 2021

When do side effects typically kick in (Sprycel/Dasatinib)
by Lavinia (Jan 25)

Thanks all for your replies! I really appreciate it. I’ve started now for about 2 weeks and have definitely had a few side effects about 5 days in. I started getting really loud pounding heart

by alexmcpee (Jan 15)

Hi there,
As others have said take it as it comes. I had some side effects kick in within days and others that took months and unfortunatly years to rear their heads.
You're spot on with the

by MartinZA (Jan 15)

Hi there
David's advice is, as always, spot on! I had absolutely no side effects on Sprycel apart from thinning hair, which soon cleared up, and I loved being on the drug as I felt great.
Sadly,

by David Fitz (Jan 15)

It's totally possible you will have none, or only very mild ones! I think you are spot on - take it as it comes, and be very happy if you have no issues 🙂.
David.
Category: Side effects

Replies: 4

Last updated: 25 January 2021
Amit on 7 December 2020

Category: Uncategorised

Replies: 29

Last updated: 24 January 2021

COVID POSITIVE WITH CML
by sandy craine (Jan 24)

Nathan ... did you mean to say the you were diagnosed with CML rather than CMS? I have edited the part of your post that included a link to advertising 'flats in Greece' for obvious reasons

by mil (Jan 22)

Great Nathan! thank you for letting us know!

by Richard42 (Jan 22)

Following the first text at 12.03 yesterday afternoon, I was notified of an appointment today within about an hour. So, I had my vaccine this afternoon - the Pfizer one - all fine. Can't

by nathanavilla (Jan 22)

Hi everyone, I was diagnosed with CMS in 2015 and I've just vaccinated this morning with the Pfizer vaccine. So far never heard any special side effects from the other people who have CMS and I
Category: Uncategorised

Replies: 29

Last updated: 24 January 2021
scuba on 6 January 2021

Category: Uncategorised

Replies: 32

Last updated: 23 January 2021

Vitamin D & Covid - update
by scuba (Jan 23)

Additional information on vitamin D, sun & skin exposure times.

https://www.jstage.jst.go.jp/article/jnsv/59/4/59_257/_pdf/-char/en

The study was done in Japan - for reference, Naha, Japan is

by scuba (Jan 22)

Best time to take vitamin D3 is in the later morning, ideally around noon.
Avoid taking D3 after the sun goes down as it can interfere with sleep.
I take sprycel in the evening before sleep. Sprycel

by ruel (Jan 22)

Hi Scuba,
I started taking Sprycel again today. If I’m going to take Sprycel at 8pm, what is the best time to take Vitamin D? Is it okay to take Spycel before dinner time?
Any suggestion pls?
Thanks

by scuba (Jan 22)

Good information. This is why testing is so important. We all metabolize vitamin D differently and absorb differently. I have a friend of mine who takes 10,000 IU's per day and barely maintains
Category: Uncategorised

Replies: 32

Last updated: 23 January 2021
David Fitz on 22 January 2021

Category: Uncategorised

Replies: 0

Last updated: 22 January 2021

Update on site issue - registration / password reset unavailable
by David Fitz (Jan 22)

We recently had a technical issue on this web site where the server could not send emails.
This resulted in the following issues:

New users could not complete the registration process
Password
Category: Uncategorised

Replies: 0

Last updated: 22 January 2021
mil on 16 January 2021

Category: Uncategorised

Replies: 9

Last updated: 18 January 2021

9th mont control
by mil (Jan 18)

Thank you Alex

by mil (Jan 18)

Thank you Alastair, i will check that topic

by alexmcpee (Jan 18)

Yeah I will be getting the vaccine. It should be anyday for us here in the UK as they start to rollout over 70s and "Extremely Vulnerable" from today so thats us.
Looking forward to

by AlastairC (Jan 18)

Hi I was advised by my specialist to take up an offer of the vaccine when it was available to me. He didn't differentiate between Oxford/AZ and Pfizer. Moderna is not yet available in UK. There
Category: Uncategorised

Replies: 9

Last updated: 18 January 2021
David Fitz on 30 December 2020

Category: Uncategorised

Replies: 3

Last updated: 18 January 2021

Dr Druker recommendation of COVID vaccines
by EvaH (Jan 18)

I didnt see that he differenciated between the vaccines
As a resident, I can easily get the Sinopharm vaccine here in UAE but I feel its a little dubious than Pfizer or Oxford, though I freely admit

by mamodei (Dec 30)

Thank you for this. Looking forward to the vaccines being available to the general population. I'm chair of our town's board of health, and dealing with the variety of attitudes

by alexmcpee (Dec 30)

That’s brill thanks David.
Good news about the Oxford Vaccine today too here in the UK. Hearing this kind of advice from someone like him will put a lot of minds at rest.

by David Fitz (Dec 30)

Most of you will know of Dr Brian Druker - without whom most of us would be dead. He led the pioneering research that resulted in imatinib, and the TKI era of CML treatment.
When asked would he
Category: Uncategorised

Replies: 3

Last updated: 18 January 2021
sandy craine on 15 January 2021

Category: Other conditions

Replies: 2

Last updated: 17 January 2021

Covid-19 inhaled treatment- this is interesting
by johnw1001 (Jan 17)

Hi Sandy,
Thanks for posting this.I think what is interesting is that prior to the introduction of tki s for treatment of CML in 2001/2002 the only available treatment available of any temporary

by alexmcpee (Jan 15)

Wow fantastic thanks Sandy

by sandy craine (Jan 15)

Synairgen begins large-scale trial of inhaled COVID-19 treatment:
Southampton, UK-headquartered company Synairgen has treated the first patient in the UK as part of a global Phase III trial
Category: Other conditions

Replies: 2

Last updated: 17 January 2021
Lisalater35 on 14 January 2021

Category: Children & young people

Replies: 2

Last updated: 16 January 2021

2 month check.
by Lisalater35 (Jan 16)

Thanks you Alex, Makes me feel better coming here and reading the post. I am getting use to the reading of blood work. I think next month I get a pcr/ abl for the first time after the start of

by alexmcpee (Jan 15)

Good stuff Lisa,
I think it's quite normal for blood work to be on the lower side in the early days until things stabalise.
I can't comment on those readouts my doc just tells me everything

by Lisalater35 (Jan 14)

Hello all,
I had my two month blood work done. My WBC is down to 2.7, but Dr Druker says that’s ok because my neutrophils are good. So all blood work looks great. My hemoglobin was low in
Category: Children & young people

Replies: 2

Last updated: 16 January 2021
dadbags on 11 January 2021

Category: Treating CML

Replies: 4

Last updated: 15 January 2021

DIAGNOSED 7/3/2001 CML--DIAGNOSED NO CML TODAY AFTER 3YEARS NO GLEEVAC
by israel (Jan 15)

Congratulations on reaching a new belt and being off gleevec for this long.

by kat73 (Jan 13)

dadbags - Congratulations! Could I ask, did you reach PCRU at some point and (presumably then) stop taking Gleevec? And if so, did you remain undetectable for these past three years?

by CM-elon (Jan 12)

Congrats Steven! Great news...and keeping the flames of hope burning for all of us. Good luck with the tests!

by scuba (Jan 11)

Congratulations Steven!
Stay vigilant and healthy.
Category: Treating CML

Replies: 4

Last updated: 15 January 2021
Myra on 7 January 2021

Category: About CML

Replies: 4

Last updated: 14 January 2021

CML treatment success
by mil (Jan 14)

Thank you Sandy, I don’t have fever today, i am trying to eat more before my imatinib, i will continue taking it, hope and pray not to vomit it 🙏🏼

by sandy craine (Jan 14)

Mil,
You must be in considerable pain with Kidney stones.
If you have a urine infection you do need to deal with that. Personally I do not take antibiotics if I can help it and prefer to deal

by mil (Jan 14)

Hi Sandy, please, i need some advice, please. I have kidney stones, i’ve been dealing with the pain, took metamizole, today i got fever, i think i have urinary infection, i took ciprofloxacin

by sandy craine (Jan 9)

Hi Myra,
You should expect to see a return to 'normal' blood counts within the first 4 weeks after starting TKi therapy. It may be that Haemaglobin levels are slightly under normal rates as
Category: About CML

Replies: 4

Last updated: 14 January 2021
Myra on 7 January 2021

Category: About CML

Replies: 3

Last updated: 13 January 2021

CML treatment success
by MartinZA (Jan 13)

It's hard to say when they will move to monthly blood tests because they are monitoring him for low counts (making him more prone to infections). At the beginning it is all about managing toxicity

by Myra (Jan 13)

Thank you Martin for your response. His blood levels have improved a lot and are stable from last 3 weeks but still he needs to go for blood test every week. I think they are observing his

by MartinZA (Jan 13)

Hi Myra
From my own experience, I achieved the complete haematologic response in 6 weeks after being diagnosed. But this included a week of hydroxyurea therapy before getting started on dasatinib.

by Myra (Jan 7)

Hi there,

How much time it takes to have complete hematologic response? Does that mean all blood counts are totally in range like normal person or slightly lower than normal person. After this
Category: About CML

Replies: 3

Last updated: 13 January 2021
mil on 12 January 2021

Category: About CML

Replies: 2

Last updated: 13 January 2021

CML and Kidney stones
by mil (Jan 13)

Thank you so much for your advice Thomas!

by thomas.c (Jan 13)

Hi,
I had 2 stones so far since my treatment, i’m on dasatinib. I don’t think its related to the treatment, at least in my case i had stones before my diagnosis too.
It is indeed

by mil (Jan 12)

Hi guys, I’m dealing with two kidney stones, too much pain! some of you maybe have this same problem before, could you let me know what did you take for this terrible pain without affecting
Category: About CML

Replies: 2

Last updated: 13 January 2021