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alexmcpee on 22 May 2020

Category: Uncategorised

Replies: 76

Last updated: 23 November 2020

Still no MMR at 24 months Nilotinib
by alexmcpee (Nov 23)

Thank you Faidra. Still smiling 😊

by Faith_05 (Nov 23)

Alex Congratulations!!So happy for you!!
Faidra

by alexmcpee (Nov 22)

Thank you Alastair,
It sure does feel good I’ve not stopped smiling for the past 3 days.
Those pesky plateaus I am sure it won’t be the last. Glad to get over the MMR line finally.
Alex

by AlastairC (Nov 22)

Alex, good to hear this. I plateaued (there are too many consecutive vowels in that word) around 0.5% from 9 months in to 18 months, and then went down to around 0.05% (The number is on a post from
Category: Uncategorised

Replies: 76

Last updated: 23 November 2020
aliensheep0 on 18 November 2020

Category: Blood tests

Replies: 11

Last updated: 21 November 2020

10% increase in BCR-ABL iS%
by chrissie (Nov 21)

My Vit D was very low but don't know exactly how low. My GP prescribed 1000Iu Vit D3 daily which I have been taking for more than one year. I also managed to sit in the sun this summer for the

by aliensheep0 (Nov 20)

I'll have to double up on that vitamin D3 supplement I bought then.

by scuba (Nov 20)

22 is very low. When I tested that low, I took 10,000 IU's every day for 3 weeks. That barely put me above 50 ng/ml. I now alternate 5,000 one day, 10,000 the next (in winter) and hover around

by aliensheep0 (Nov 20)

My vitamin D is a little low, at 22. So I started taking a vitamin D supplement at 5000iu 2 days ago. my regular multivitamin already includes 2000iu
Category: Blood tests

Replies: 11

Last updated: 21 November 2020
David787 on 18 November 2020

Category: Drug-drug interactions

Replies: 14

Last updated: 20 November 2020

Ibuprofen
by David787 (Nov 20)

I had never heard of Zapain until now, I shall get some! Thanks Denise
Best
David

by David787 (Nov 20)

This is the Tumeric you bought with the black pepper, Ben?
Best
David

by benjarvis (Nov 20)

I bought a high strength one off amazon it must include black pepper has helps with absorption.
its has really helped me.
cheers Ben

by Felix (Nov 20)

Hi, I take Zapain for back pain ,think it's Paracetamol and codeine works an absolute treat for me .I only take it when I really need to so I have never become addicted to it .It can make you
Category: Drug-drug interactions

Replies: 14

Last updated: 20 November 2020
Mosalem2093 on 19 November 2020

Category: Treating CML

Replies: 0

Last updated: 19 November 2020

Vidaza & Spyrcel alternative Questions
by Mosalem2093 (Nov 19)

Hi all,
My father is 79 years old and he is a CML patient since 2011.
8 months ago, they have switched to Sprycel but a month ago he was hospitalized due to ineffective Sprycel. He has been through
Category: Treating CML

Replies: 0

Last updated: 19 November 2020
sandy craine on 16 November 2020

Category: Blood tests

Replies: 2

Last updated: 18 November 2020

Vit D3 levels/measurement
by scuba (Nov 18)

Hi John,
I maintain my vitamin D level around 170 nmol/L. - which is equivalent to 70 ng/ml.
60 nmol/L is insufficient for viral and cancer protection. Here is a handy conversion tool:

http://

by johnw1001 (Nov 18)

Hi Sandy,
Thanks for posting this;it is very useful and perhaps very timely as winter is approaching and we have much less UV light to take in outdoors.
At the beginning of the year I was found to

by sandy craine (Nov 16)

Some useful information here on different measurements used for assessing D3 status. Understanding the difference between nmol/L and ng/ml is important... see the link below for a conversation
Category: Blood tests

Replies: 2

Last updated: 18 November 2020
alexmcpee on 16 November 2020

Category: Uncategorised

Replies: 4

Last updated: 18 November 2020

Bleeding gums (night only)
by alexmcpee (Nov 18)

Hi John
Thanks for your reply. I am in the UK so will check out your recommendation for gum shields and the mouth wash. I am sure I am clenching my jaw at night so could well be this. PCR results on

by johnw1001 (Nov 17)

Hi Alex,
I have issues with grinding of teeth to the extent that some of my front lower ones are chipped and ground off -I suppose that I could have a few crowns put in but so far have not gone down

by alexmcpee (Nov 17)

Hey Sandy
I do grind my teeth for sure and I am certain I also clench my jaw while I sleep. That plus the fact I often “suck” my teeth. I just got a little worried it was CML/TKI related

by sandy craine (Nov 17)

Hi Alex,
it does seem strange that it is only your back molars/wisdom teethe have the problem. Other than making sure you adequately clean and massage all of your gums - a little harder to do that
Category: Uncategorised

Replies: 4

Last updated: 18 November 2020
Sally Martin on 16 November 2020

Category: Drug-food interactions

Replies: 5

Last updated: 16 November 2020

Nilotinib fasting & vaccine query
by alexmcpee (Nov 16)

Hey Peter,
I hear you and completely understand I am sure the vaccine will be a knockout and another from Moderna announced today 94% protection. I have a lot faith in science after all we probably

by Dustylloyd (Nov 16)

Hi Sally, hi Alex,
its always interesting to read Alex’s replies and he’s spot on every time, but on the covid vaccine situation I’m in the queue ASAP, the worlds top

by alexmcpee (Nov 16)

No problem at all Sally.
Yes if it’s affecting your life then certainly change. I have noticed sleep disturbances on Nilotinib I would LOVE to have an uninterrupted sleep. I think partly my

by Sally Martin (Nov 16)

Thanks Alex - helpful as always. I think I probably will make the change on timings just because it’s interrupting my sleep (which was the whole point of changing in the first place) and also
Category: Drug-food interactions

Replies: 5

Last updated: 16 November 2020
colleencrane1 on 16 November 2020

Category: Uncategorised

Replies: 7

Last updated: 16 November 2020

Supplements
by Felix (Nov 16)

Hi, I am just on 3 years in ,on Dasatinib/Sprycel previously on Imatinib and undetected .If you have any questions I can help with please ask ,Denise.

by colleencrane1 (Nov 16)

Thank you!

by Felix (Nov 16)

Hi, Scuba hope you are well .Mine are from Nu U Nutrician ,Denise.

by Felix (Nov 16)

Hi,think everyone likes their own dose but mine are 600 mg 2 in the morning and 2 at night must have black pepper too, Good Luck with your journey ,Denise x.
Category: Uncategorised

Replies: 7

Last updated: 16 November 2020
colleencrane1 on 10 November 2020

Category: Uncategorised

Replies: 16

Last updated: 15 November 2020

Newbie Here! Diagnosed on Election Day :(
by colleencrane1 (Nov 15)

Thank you so much for the article and the information! I will be talking with my Dr. tomorrow. Colleen

by scuba (Nov 15)

Hi Colleen,
Consider discussing with your doctor a lower starting dose for sprycel (dasatinib) at 50 mg.
https://pubmed.ncbi.nlm.nih.gov/31553487/
Dasatinib is potent and continuing research is

by colleencrane1 (Nov 15)

I just got the book yesterday. I look forward to reading it. Thank you all for the suggestion!

by David787 (Nov 15)

Just finished reading the book, John. What a fabulous read and an amazing cast of characters...and it’s all real - bought several tears to my eyes.
Best
David
Category: Uncategorised

Replies: 16

Last updated: 15 November 2020
Justine on 12 November 2020

Category: About CML

Replies: 5

Last updated: 14 November 2020

Covid-19 and leukemia
by Justine (Nov 14)

Thanks John, that is really interesting! I look forward to learning more about these trials as they progress -- as I'm sure we all do! Wouldn't that be a nice surprise, unexpected benefit to

by johnw1001 (Nov 14)

Hi All,
I have posted on this before. Those of us on tki s might actually be well protected by the effects of in particular imatinib and dasatinib as being what I call protectors against the

by Justine (Nov 12)

Thanks Alex and Richard for your comments. I wondered about that and am reassured but of course will still be cautious.

by Richard42 (Nov 12)

I agree with Alex. In discussion with my consultant, the distinct impression I have is that unless your CML is such that your immune system is compromised (which is not likely if you are
Category: About CML

Replies: 5

Last updated: 14 November 2020
hannah2010 on 11 November 2020

Category: Uncategorised

Replies: 6

Last updated: 14 November 2020

WBC 15.5
by hannah2010 (Nov 14)

Hi
thanks for replying John, I had a pcr result yesterday of undetectable but in my mind I can’t let the neutrophillia go it’s still bothering me and wondering if and worrying i

by johnw1001 (Nov 14)

Hi Hannah,
Your specialist will be looking at your most recent PCR-bcr/abl from August 2020 and those previous to that date and these seem to indicate that you are nearly

by hannah2010 (Nov 11)

Thank you, the consultant wasn’t even concerned it was me who was

by AlastairC (Nov 11)

Hi Hannah, his could easily be explained by you having a sub-clinical infection which your body is resolving without you feeling unwell. It needs checking out but I think not likely to be anything
Category: Uncategorised

Replies: 6

Last updated: 14 November 2020
MJP on 11 November 2020

Category: Blood tests

Replies: 1

Last updated: 12 November 2020

Finally
by alexmcpee (Nov 12)

When you say finally I thought you meant you’d been on this path for many years. 29 months to undetected is exceptional and should be celebrated I certainly would. It’s taken me this

by MJP (Nov 11)

After 29 months, I have my first undetected result. Currently on 70mg dasarijin. Started on 100 for about 18 months. Hoping to convince my Dr to take me to 50.
Category: Blood tests

Replies: 1

Last updated: 12 November 2020
cousineg2 on 12 November 2020

Category: Clinical trials

Replies: -1

Last updated: 12 November 2020

NEW - Hematopoietic stem cell transplantation using single UM171-expanded cord blood

Category: Clinical trials

Replies: -1

Last updated: 12 November 2020
tom888 on 22 October 2020

Category: Drug-drug interactions

Replies: 2

Last updated: 11 November 2020

olive leaves
by tom888 (Nov 11)

Thanks for your post. The question about all these natural products is the following .... Can one be cured by applying natural remedies with dedication? We all find that many foods and herbs that

by johnw1001 (Nov 9)

Hi,
Thanks for posting
It is not unusual to come across studies about plant based extracts and their benefits for instance you might have seen the protaganists for the use of resveratrol an extract

by tom888 (Oct 22)

https://www.hindawi.com/journals/omcl/2014/927619/
Category: Drug-drug interactions

Replies: 2

Last updated: 11 November 2020
johnw1001 on 10 November 2020

Category: Other conditions

Replies: 2

Last updated: 11 November 2020

Live/inactivated vaccines and CML-Covid 19 vaccines
by Richard42 (Nov 11)

Hi John
Yes, the Pfizer/BioNtech vaccine in the news this week is messenger RNA based - as indeed is the Imperial College one. Scientifically, that's pretty exciting as its new technology. On

by sandy craine (Nov 11)

Hi John,
yes this is a subject that I have been thinking about for some time. You might find the following article helpful. I think it really depends on the individual's immune status as to

by johnw1001 (Nov 10)

Hi All,
The subject of whether CML patients should risk being offered live vaccines has arisen before on Forum largely in the context of those proposing to travel to Yellow Fever infected regions
Category: Other conditions

Replies: 2

Last updated: 11 November 2020
David787 on 9 November 2020

Category: About CML

Replies: 5

Last updated: 10 November 2020

Light headedness/Dizzyness
by Nimbus2 (Nov 10)

I was started on imatinib. It is the cheapest of the TKIs so haematologists are driven in that direction. I have also been told that it is the safest TKI for those with conditions such as diabetes

by David787 (Nov 10)

Hello John
Thanks for writing. I am about to embark on Imatinib - good to know you have been taking it for 15 years! The advice is much appreciated and follows the guidelines given in the mass of

by johnw1001 (Nov 9)

Hi David,
You dont say which tki that you will be taking?
With nilotinib you will need to fast but with the others you might find that taking the pill with a substantial meal and a few glasses of

by David787 (Nov 9)

Many thanks Denise, I shall take your advice.
David
Category: About CML

Replies: 5

Last updated: 10 November 2020
David787 on 2 November 2020

Category: Getting help

Replies: 16

Last updated: 9 November 2020

Newbie!
by David787 (Nov 9)

Has anybody else had the symptoms of occasional light headedness and slight shivering with CML? My GP seems to think they are CML symptoms. In any event, starting Imatinib this week so hopefully

by David787 (Nov 6)

Hello David, many thanks for that. I certainly wasn’t prepared for how wiped out I have been feeling.
Rather than just totally knackered, I have been feeling faint/slightly dizzy when I do

by David Fitz (Nov 6)

Hey David - Don't be concerned that you're feeling exhausted now, that's totally normal. Your body is dealing with a lot - hydroxycarbamide takes a shotgun to lots of those bad white

by David787 (Nov 6)

Thanks for yours Eva, well I am not doing 3 miles any more! The last couple of days I felt very weak and useless. Have just finished the hydroxycarbamide, TKIs start soon! Very encouraging to hear
Category: Getting help

Replies: 16

Last updated: 9 November 2020
Justine on 24 July 2017

Category: Side effects

Replies: 16

Last updated: 8 November 2020

Mental/emotional issues
by kat73 (Nov 8)

Why do they want to switch you?

by Sherley (Nov 8)

Hi. I’m so sorry to hear about your diagnosis. That is tragic that happens to you. I’ve been fighting CML for two years now. Started with gleevec which made me so sick all

by SWFlorida40 (Oct 11)

hi my name is Steven I was diagnosed in February 2020
it’s been rough
tried sprycel for about 4-5 months then it caused fluid around my heart and lungs I had to have it drained

by Parklife (Feb 2)

Hi.
Thanks for your input and opinion.
I have tried Imatinib, then Nilotinib, then Dasatinib (Worst for me), finally I am now on Bosutinib.
We have agreed to see things out as I have seen minor
Category: Side effects

Replies: 16

Last updated: 8 November 2020
Kathyp on 20 October 2020

Category: Uncategorised

Replies: 6

Last updated: 6 November 2020

Shielding covid
by Nimbus2 (Nov 6)

Yes, it seems that we must follow the new lockdown law plus the advisory "extra precautionary shielding measures". I will miss swimming but otherwise I will follow the new rules to the

by Kathyp (Nov 6)

I’ve received an email from the government saying to only go out fir exercise and drs appointments And my free Asda delivery slot has been extended to March 🤷‍♀️X

by EvaH (Nov 6)

I'm not living in the UK, but I have been going out socially and living as normal since august. In a normal week im exposed to about 10 people, most of whom are a closed groups and much of my

by alexmcpee (Oct 21)

Yeah I got all that info in the 1st wave but nothing new since the rising rates.
Category: Uncategorised

Replies: 6

Last updated: 6 November 2020
maya55 on 20 August 2013

Category: Uncategorised

Replies: 4

Last updated: 4 November 2020

weight loss surgery and gleevec
by 802eimmun (Nov 4)

Hello, I know this post has been posted a few years back. But I am just curious if you were ever approved or received the Sleeve gastrectomy?

by sandy craine (Aug 22)

Maya,

Maybe another option would be to change to another TKI? There does seem to be a problem for some with weight gain and therapy with imatinib (Glivec). From what I can gather the newer TKI

by maya55 (Aug 22)

i hope they will know.

i will let you know if i will find out.

my deep concern is that indeed there will be problems of absorption with the gleevec, in that case i will not do the

by sandy craine (Aug 21)

Dear Maya,
This kind of surgery seems a pretty drastic step to take. I have no experience and hesitate to advise you on this. It might be that apart from the possible problems of absorption of
Category: Uncategorised

Replies: 4

Last updated: 4 November 2020