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sandy craine on 5 February 2021

Category: Food & fitness

Replies: 9

Last updated: 8 March 2022

Vit D3 - levels required for immune health
by drarchanaj.adapt (Feb 18)

Thanks for the information

by Karinne (Feb 18)

I take vit D3 5,000IU/ vit K2 180mcg every other day. But I live in Southern California (lots of sun).

by drarchanaj.adapt (Feb 18)

How much of vitamin D supplements do you take on a daily basis ??

by Karinne (Feb 10)

Great idea!! And yes I am in SoCal.
Category: Food & fitness

Replies: 9

Last updated: 8 March 2022
scuba on 16 February 2021

Category: Uncategorised

Replies: 3

Last updated: 16 February 2021

Covid vaccine adverse events
by sandy craine (Feb 16)

I also use the Kings College (ZOE) Covid symptom study app and follow with interest insights based on their real time data. As Richard has very helpfully pointed out, they have seen an increase in

by Richard42 (Feb 16)

A Google search into Principia Scientific would suggest a need to exercise caution with anything they write.
I’ve been logging daily with an app run by Kings College London which has

by johnw1001 (Feb 16)

Hi Scuba,
I think your last observation is the relevant one.If one were willing and able to screen all of potential patients to be vaccinated for prior medical conditions then there is

by scuba (Feb 16)

https://principia-scientific.com/uk-government-releases-shocking-report-...
The highest incidence appears to be cerebral/eye disorders. One in ~300 chance of an adverse event.
Unfortunately,
Category: Uncategorised

Replies: 3

Last updated: 16 February 2021
sandy craine on 9 January 2015

Category: Getting help

Replies: 28

Last updated: 15 February 2021

Question 2: Your experience of diagnosis?
by EvaH (Feb 15)

hey sandy - fun questions!

1. Where there any unusual symptoms that prompted you see your GP?
I was feeling a bit hot, off my food and nauseous. I assumed this was anxiety related to the

by sandy craine (Feb 14)

Hi David.... thanks for unearthing this thread from way back in 2015! It is fascinating to re-read and I agree that it may be worth promoting it again, (maybe as a stand alone thread) so it will act

by snowman 35 (Feb 13)

Hi Sandy
In June of 2016 I did the blood test that I do every year for a check up. I had absolutely no symptoms! I had noticed that I did not gain wheight but that is something normal for me from

by David787 (Feb 13)

Hello Sandy, I have recently discovered this very interesting post from 2015. I thought I would add my experience. If for no other reason, I think it may be fairly cathartic, but hopefully someone
Category: Getting help

Replies: 28

Last updated: 15 February 2021
Roza on 13 February 2021

Category: Uncategorised

Replies: 2

Last updated: 15 February 2021

First 6 months and side effects of Imatinib
by David787 (Feb 15)

Hello Denise
I was diagnosed two months before you and went through the dry skin/rash phase, although not on my face. The rashes only lasted for about a month, and after 3 months on Imatinib, the

by Deni H (Feb 14)

Hi
I was diagnosed in December 2020 and I'm on 400mg Imatinib. Thank you so much for your post. Its reassuring to see there is light at the end of a very gloomy tunnel at the moment for me. I

by Roza (Feb 13)

For anyone who has been recently diagnosed and suffering from really bad bone pain and muscle cramps I wanted to share with you that time really does heal. I was diagnosed in June 2020 and the bone
Category: Uncategorised

Replies: 2

Last updated: 15 February 2021
BoatGuy22 on 12 February 2021

Category: Treating CML

Replies: 4

Last updated: 14 February 2021

Gleevec causing Inflamed Liver
by johnw1001 (Feb 14)

Hi Bill,
I wonder if you are taking any other medications such as pain killers like acetaminophen (paracetemol) that will hammer the liver .
My consultant told me that the Gamma GT

by sandy craine (Feb 14)

Hi Bill,
it seems that milk thistle is not contraindicated with TKis
just a quick search indicates it is safe
'Milk thistle is taken by mouth most often for liver disorders, including

by BoatGuy22 (Feb 12)

Hi Kirk, Thanks for the reply. Asciminib has been mentioned by my oncology team but due to the fact that it is so new their is some hesitation due to the lack of clinical history to show

by RC Kirk (Feb 12)

Hi Bill,
Looks like you have a good CML team on your side. I was just wondering if asciminib has been considered as an option? I don't know, but maybe it's hard on the liver as
Category: Treating CML

Replies: 4

Last updated: 14 February 2021
mrgee on 11 February 2021

Category: Treating CML

Replies: 4

Last updated: 13 February 2021

E450K Mutation
by mrgee (Feb 13)

Thanks for posting over there. I will reply there was well. It will be interesting to see if there is any publicly available info.

by mrgee (Feb 13)

Thanks I appreciate the link.

by Buzzm1 (Feb 13)

▼https://communityview.lls.org/statuses/8604
Trey
The E450K mutation can come and go, but it is NOT a precursor to other mutations. It is a mutation which can be transient, which

by RC Kirk (Feb 12)

I found this: https://pubmed.ncbi.nlm.nih.gov/19768693/
From a cursory look it appears that some mutations transform to T315I. So maybe ponatinib or asciminib would be something to
Category: Treating CML

Replies: 4

Last updated: 13 February 2021
mil on 12 February 2021

Category: Uncategorised

Replies: 0

Last updated: 12 February 2021

Imatinib and inmunomodulators
by mil (Feb 12)

Hi guys, any of you know about the interaction between TKIs (Imatinib) and inmunomodulators (topic creams) use in HPV warts infection?
Thank you in advance for your answers!
Category: Uncategorised

Replies: 0

Last updated: 12 February 2021
mamodei on 8 February 2021

Category: Side effects

Replies: 10

Last updated: 11 February 2021

Is joint pain common? (dasatinib)
by mamodei (Feb 11)

I got some of that Ancient Minerals (the oil instead of the lotion), as well as an oral supplement. Hopefully these will do the trick, or at least make a noticeable improvement.
Thanks,
Maria

by sandy craine (Feb 11)

Maria,
I use transdermal magnesium in the form of a lotion/cream. I find it easier to use if I make it part of my 'before bed' routine and rub it into my feet and lower legs. It really helps

by mamodei (Feb 11)

Thank you John, that is helpful. Particularly the note on statins. I was switched to dasatinib due to a TIA on nilotinib. They also added a statin. I lasted 3 days on the

by johnw1001 (Feb 11)

Hi Maria,
If you look at the product information for Dasatinib and also on sites like Drugs.com the effects that you describe are quite common as side effects.
Very common over 10%-
Category: Side effects

Replies: 10

Last updated: 11 February 2021
cmljax on 31 January 2021

Category: Uncategorised

Replies: 7

Last updated: 10 February 2021

Best time to take 20 mg Srycel?
by mamodei (Feb 10)

I second taking it a bedtime. I take it between 8 and 9. I've got about an hour before I start feeling the side effects increase I get after taking it. By morning all is

by Naj (Feb 10)

Cmljax,
Thank you for your reply .I hope your side effects will be much better with Sprycel.

regards
Naj

by cmljax (Feb 7)

I am switching because after almost 4.5 years on Tasigna, 3.5 years of which have been on the current low dose, I still have a number of side effects including ectopic heart beats (these resolved

by Naj (Feb 5)

Hi Cmljax,

Just for my curiosity what is the reason you want to switch ?? I am also on Tasigna and due to fasting period I often think I should also discuss with my physician for
Category: Uncategorised

Replies: 7

Last updated: 10 February 2021
Mari_lyn on 10 January 2021

Category: Treating CML

Replies: 9

Last updated: 10 February 2021

How to read response definitions of 2nd line TKI's after 1st line failure/warning responses
by Mari_lyn (Feb 10)

Hello Martin,
I'm so sorry, I didn't get a notice after your reply! And haven't checked-in here for a long time but I just read that there were some malfunctions last month on this

by MartinZA (Jan 18)

Also another thing I just thought of:
Let's say you are on imatinib for the first 18 months after diagnosis and then change to dasatinib because you didn't reach MMR. If you have to count the time

by MartinZA (Jan 18)

Hi Marilyn
Sorry to hear that your side effects are worse on dasatinib. Here's hoping they soon settle down! Something I have often wondered is whether the response to the drug correlates with the

by MartinZA (Jan 18)

Hi Marilyn
Sorry to hear that your side effects are worse on dasatinib. Here's hoping they soon settle down! Something I have often wondered is whether the response to the drug correlates with the
Category: Treating CML

Replies: 9

Last updated: 10 February 2021
mbrit on 7 February 2021

Category: About CML

Replies: 5

Last updated: 9 February 2021

CML symptoms persisting
by sandy craine (Feb 9)

Your PCR result shows your response to nilotinib is very good... you seem to be on a low dose? Normally the dose for second line (after sub-optimal response to another TKI) is 400mg twice daily.

by mbrit (Feb 9)

My BCR/ABL was 0.0037% in December and I take 200mg nilonitib twice a day. I'm sorry about the confusion.
I started out with imatinib but it didn't have the desired effect at 6 months so my

by Buzzm1 (Feb 8)

It's unfortunate that this forum doesn't have an interactive profile page so that everyone could post their CML history and keep it updated ... it eliminates a lot of unnecessary repetitive

by sandy craine (Feb 8)

Hi,
Please can you share your blood test results... especially your PCR results. Also, I assume you are taking 400mg nilotinib two times a day?
Was nilotinib prescribed as first line therapy or were
Category: About CML

Replies: 5

Last updated: 9 February 2021
SS86 on 2 February 2021

Category: Organising your life

Replies: 9

Last updated: 7 February 2021

Recently Diagnosed with CML
by SS86 (Feb 7)

Hi Lavinia,
Thanks for writing.
I wish you all the best for this battle and hope you come out victorious sooner than anticipated.
I read your story and it was very similar to ours.

by Lavinia (Feb 7)

Hi there,
I just wanted to chime in on the ‘trying to plan a family’ part because that is close to home. After being with my partner for 10 years we finally started trying to have a

by Deni H (Feb 4)

Thanks so much for replying.
I was being treated at Liverpool Clatterbridge Hospital but have been discharged to the care of Aintree Hospital in Liverpool. They currently have me on 400mg of

by sandy craine (Feb 4)

Hi Deni,
Where are you being treated and which TKI are you taking? I expect/hope your spleen will shrink back to normal size as you go on with your treatment.
re: pneumonia, I suggest also that you
Category: Organising your life

Replies: 9

Last updated: 7 February 2021
mil on 14 January 2021

Category: Uncategorised

Replies: 6

Last updated: 5 February 2021

Kidney stones and infection
by mil (Feb 5)

Hi guys, thank you all for your advices. I am feeling better now, I got an ultrasound 5 days ago and finally eliminate the kidney stones. The signs of infection had gone. The pain was terrible

by ColoradoGuy (Jan 30)

My wife has taken Stonebreaker pills and tea in the past as well as urisoidal or something to that effect. That seems to work wonders. I have witnessed how painful that can be so I hope yours

by Botagoz Abdrakhmanova (Jan 30)

Hi Mil, my mom has CML, last year she has suffered from fevers due to the kidney stones too. We tried pain killers, but fevers were just recurring again and again, so in the end after consultations

by mil (Jan 14)

Hi, I asked another doctor, he told me not to stop my medication even if i have fever or infection, only if a have too much nausea i can skip few doses, but he recommended me to continue with my
Category: Uncategorised

Replies: 6

Last updated: 5 February 2021
johnw1001 on 3 February 2021

Category: Food & fitness

Replies: 3

Last updated: 5 February 2021

UK government position on efficacy of Vitamin Dsupplements.
by alexmcpee (Feb 5)

Great article and I agree the guidance on dosage is ridiculous. 4000iu for me it is for the time being.

by Nimbus2 (Feb 4)

Here is the letter: Over 200 Scientists & Doctors Call For Increased Vitamin D Use To Combat COVID-19
https://vitamindforall.org/letter.html
I also take 4000 IU with K2.

by alexmcpee (Feb 4)

Hi John
I too received my supply and was disappointed that it was stating 400IU and not to exceed that dosage. Strangely every tub of vitaminD that I have found all say do not exceed dosage

by johnw1001 (Feb 3)

Hi All,
I have been looking at the advice leaflet sent out from Department of Health and Social Care with the first batch of Vitamin D (120 tabs at 400 iu each) to vulnerable patients.It says that
Category: Food & fitness

Replies: 3

Last updated: 5 February 2021
sandy craine on 3 February 2021

Category: Treating CML

Replies: 0

Last updated: 3 February 2021

Discontinuation of TKIS in CML: when and for whom?
by sandy craine (Feb 3)

A clear and thorough overview of the current data available from the clinical studies of TKI discontinuation and/or dose reduction.
Full article here
Sandy
This is quite an in-depth article so
Category: Treating CML

Replies: 0

Last updated: 3 February 2021
Mel on 27 January 2021

Category: Side effects

Replies: 12

Last updated: 3 February 2021

Stroke like symptoms on Gleevec
by Buzzm1 (Feb 3)

Mel, in response to your question: "The concern is I was Gleevec toxic."
TKIs are toxic medications and the more we take over the longterm the higher the probability of suffering

by Mel (Feb 2)

few weeks ago I started having problems swallowing as well as some pins and needles feeling in my left side. Quickly this progressed into not being able to move my entire left side. My left eye

by Mel (Feb 2)

I was do after a headache I couldn’t shake. My platelet count was in the 600s. I have been on Gleevec for the past year. The app drugs . Com as well as the FDA web site says it’s rare

by Mel (Feb 2)

I was do after a headache I couldn’t shake. My platelet count was in the 600s. I have been on Gleevec for the past year. The app drugs . Com as well as the FDA web site says it’s rare
Category: Side effects

Replies: 12

Last updated: 3 February 2021
Lavinia on 29 January 2021

Category: Side effects

Replies: 2

Last updated: 3 February 2021

Flu like symptoms on Sprycel/Dasatinib
by ThomasS (Feb 3)

I started on 100mg and i felt terrible too. I had to finally insist that we drop the dose to 50mg. My Dr didn't want to but she finally agreed to 70. Then 50 and side effects are much better and

by Felix (Jan 29)

Hi, when you come off the Allopurinol you should feel a bit better ,I did anyway caused terrible diahorea.When I started on Dasatinib I refused to start on 100 mg ,I had heard big burly 6 foot men

by Lavinia (Jan 29)

Hi all,
I started my CML treatment on Jan 13th with 100mg Desatinib. I posted previously asking about side effects and now that I’ve been on it for a few weeks they’ve definitely kicked
Category: Side effects

Replies: 2

Last updated: 3 February 2021
Tbrand on 16 January 2021

Category: Uncategorised

Replies: 1

Last updated: 2 February 2021

US Medicare
by Lisalater35 (Feb 2)

I hear the same thing about good RX in fact our insurance told us about it...

by Tbrand (Jan 16)

I haven’t seen a discussion on this for a while and looking at previous posts, this donut hole thing looks expensive for imatinib. I’m still a few years from Medicare, but doing some
Category: Uncategorised

Replies: 1

Last updated: 2 February 2021
Jmbnccyn on 29 January 2021

Category: Treating CML

Replies: 4

Last updated: 31 January 2021

Slow response imatinib..?
by EvaH (Jan 31)

Ive gone on to live in 3 countries on 2 continents since my diagnosis (including spain). I dont feel my CML restricts me in any way.
If you can, try to focus on what comes after, not on where you

by EvaH (Jan 31)

Every body is different, you are getting better and that's what matters.
I had a sub optimal response on 400mg imatanib at 3 months, but continued to have a very quick TMR time. And i had more than

by Dustylloyd (Jan 31)

Hi jay,
Alex is spot on in his reply to your concerns, I was on 200mg of Imatinib when first diagnosed 6 years ago, after 9 months my consultant informed me it had “failed” which I found

by alexmcpee (Jan 30)

Hi Jay
I completely understand your worries and concern. And like you in the early days I didn’t want to know anything bad and buried my head in the sand. At diagnosis I didn’t read any
Category: Treating CML

Replies: 4

Last updated: 31 January 2021
cmljax on 22 January 2021

Category: Side effects

Replies: 15

Last updated: 31 January 2021

Peripheral Neuropathy on Tasigna
by cmljax (Jan 31)

My oncologist is going to let me switch to 20 mg Sprycel. Here's hoping that that this resolves the neuropathy without causing any new side effect, e.g. pleural effusions - time will tell

by ColoradoGuy (Jan 28)

I have felt that sharp pain in my big toe now that I think of it. It does not las long and has happened about 3-4 times in the last 20 months. I also attribute it to Tasigna (600mg) but

by cmljax (Jan 27)

Shawn - I think we all react to these TKI's differently. There are some common side effects that many of us experience, but then there are the less common and even rare ones. Here

by ShawnJ (Jan 27)

I am not a veteran like some here with Sprycel but I have been on an aggressive dose reduction path since reaching MMR.
I have taken Sprycel for a little over a year now. I started at 100mg for 6
Category: Side effects

Replies: 15

Last updated: 31 January 2021