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MartinZA on 22 February 2021

Category: Treating CML

Replies: 3

Last updated: 22 February 2021

In praise of Vitamin D
by scuba (Feb 22)

Martin - let us know your vitamin D level test results.

by MartinZA (Feb 22)

Hi scuba
Thank you so very much for the detailed post and for the explanation. Practical and extremely helpful advice as always! I'm going to aim for that level of Vitamin D between 50 and 100 and

by scuba (Feb 22)

It's near impossible to overdose on D to toxic levels while supplementing on 10,000 IU's per day or less. The body itself can make between 10,000 - 20,000 IU's on its own when exposed to

by MartinZA (Feb 22)

Hi everyone
A year or so ago I posted about my BCR-Abl levels and my view that it had something to do with Vitamin D. In summary, I was stuck on 0.03% for a very long time (over a year) before
Category: Treating CML

Replies: 3

Last updated: 22 February 2021
israel on 17 June 2019

Category: Treating CML

Replies: 9

Last updated: 20 February 2021

Looking to reduce dosage of Imatinib 600mg to 400mg
by israel (Feb 20)

1.03N/AN/AN/A20150.063N/AN/AN/A20160.070.02N/AN/A20170.0890.0132N/AN/A20180.020.0091N/AN/A20190.00.00.00.020200.000250.0120.00820.00420210.011
* N/A = Not available

by israel (Jan 28)

Hi,
Quick update on my dose reduction journey. I had two more PCR tests since I last posted to this thread:

- November: 0,0073
- January: <0,00025

The tests weren't

by israel (Aug 18)

Hi all,
I want to give an update on my treatment since I last opened this thread.
In July, I started to take a reduced dose of Imatinib every other day, alternating between 600mg today and 400mg

by israel (Jun 19)

Hi Poppert!
I didn’t have any PCR tests in between February 2015 and February 2016. My national healthcare system isn’t able to provide the optimal PCR test frequency, so big gaps
Category: Treating CML

Replies: 9

Last updated: 20 February 2021
vonnie on 20 February 2021

Category: Uncategorised

Replies: 0

Last updated: 20 February 2021

folic acid
by vonnie (Feb 20)

Hi there thanks to all that have answered my question about folic acid it is reassuring
Vonnie
Category: Uncategorised

Replies: 0

Last updated: 20 February 2021
Gareth on 19 February 2021

Category: Treating CML

Replies: 10

Last updated: 20 February 2021

I have CML!
by alexmcpee (Feb 20)

Hey Sandy,
No not at all thank you for your reply we are all learning on this journey 😀. Yeah it’s all a bit of mystery all the numbers. I have to this day remained slightly paranoid of my

by sandy craine (Feb 20)

Hi Alex,
Please do not think I was saying you were wrong or giving false information, I was just trying to say how complex the whole thing is and the white cell count on its own, does not

by alexmcpee (Feb 20)

Oh my bad. When I was diagnosed before I had my FISH my consultant said that I’d prob had CML for 3 years due to my high white cell count of 330 (which I understand causes the increase in

by Gareth (Feb 20)

My current bloods breakdown:
Haemoglobin 137
White count 36.7
Platelets 227
Neutrophils 29.5
G
Category: Treating CML

Replies: 10

Last updated: 20 February 2021
Jmbnccyn on 19 February 2021

Category: Uncategorised

Replies: 4

Last updated: 19 February 2021

dudas sobre selenio y vit d3 y k2
by Jmbnccyn (Feb 19)

Hello Sandy, thank you for your valuable information, I had planned to take a capsule every two days, but even if I live in Spain, since the diagnosis I have hardly received sunlight since I have

by Jmbnccyn (Feb 19)

Hi Alex, thanks again for your advice, I also do not know my vit d figures but I imagine they will be low since I have barely left home since October, so I will start taking the capsules with a view

by sandy craine (Feb 19)

Hello Jay,
My personal view is, you do not need to be as cautious/careful at your suggest with Vit D3+K2. If you can manage to get a test for your current Vit D level, then that will at least give

by alexmcpee (Feb 19)

Hi Jay,
I think its probably best to order a Vitamin D test to know your current level. But I do believe most of us are deficient from the copiuos amounts of reading I have done on the subject. And
Category: Uncategorised

Replies: 4

Last updated: 19 February 2021
vonnie on 17 February 2021

Category: Uncategorised

Replies: 1

Last updated: 19 February 2021

folic acid
by johnw1001 (Feb 19)

Hi Vonnie,
Apparently this is the effect of the tki or so I was told at my last consultation.Your consultant is probably referring to MCV -mean corpuscular volume;the normal range is 80-99 but mine

by vonnie (Feb 17)

Hi i had my three monthly blood results this morning all fine but my Consultant said my red cells were slightly larger than normal but there was no anaemia and my liver function was normal she told
Category: Uncategorised

Replies: 1

Last updated: 19 February 2021
Amanda2000 on 7 February 2021

Category: Uncategorised

Replies: 14

Last updated: 19 February 2021

Possibly Cml?! What do you think?
by Lisalater35 (Feb 19)

When I started out in 2016 my platelets were elevated. I had to go to hematologist as well. 2020 my WBC was elevated, but not to elevated. Finally The hematologist/Oncologist did a bone marrow

by Amanda2000 (Feb 16)

Also, last March when I first started going to the Hematologist, she done the Ana test and a few others and thought she done the Bcr-abl, but she she said she got to looking for it and couldn't find

by Amanda2000 (Feb 16)

My doctor said shes doing the Bcr-abl screening when i come back for lab work, she said she thought they had already done it, so we shall see.

by EvaH (Feb 16)

It would be unusual to have pain in your spleen at this low a level of wbc, from CML at least
Bcr-abl tests are incredibly costly, they would not be done without good suspecion, unless you insist
Category: Uncategorised

Replies: 14

Last updated: 19 February 2021
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