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sandy craine on 14 April 2022

Category: Other conditions

Replies: 1

Last updated: 24 June 2022

Geert Vinden Bossche - not the message we want to hear!
by scuba (Apr 15)

And, of course, vitamin D:

https://www.cureus.com/articles/93377-vitamin-d-the-missing-nutrient-beh...

Vitamin D supplementation and clinical outcome of COVID-19 patients
The number of deaths

by sandy craine (Apr 14)

Many of us will not want to hear this, but I think it's important to at least listen to what this guy is saying. It is complex information, but stick with it. We are not done with this pandemic
Category: Other conditions

Replies: 1

Last updated: 24 June 2022
Myra on 5 April 2022

Category: Blood tests

Replies: 7

Last updated: 11 April 2022

Same PCR level from last 3 times
by ColoradoGuy (Apr 11)

I would say that I normally see a plateau for three test results before it goes down again. My plateaus normally include at least one result that goes up from the previous results. They

by hannibellemo (Apr 8)

Myra, I know it's disappointing to hit a plateau but in terms of survival you are at a very safe spot. I love how doctors say what they want when, other than taking our meds as directed, we have

by scuba (Apr 8)

Something to keep in mind is that once you achieve complete cytogenetic remission (CCyR), progression free survival rates are no different statistically than with patients who achieve deeper

by Myra (Apr 8)

I get your point that it's a safe place to me with such low level. In the starting the response to Dastanib was very good and within a year the value was 0.14... but now there is a plateau and
Category: Blood tests

Replies: 7

Last updated: 11 April 2022
Barbs on 4 April 2022

Category: Uncategorised

Replies: 1

Last updated: 8 April 2022

Zavie Miller Zero Club.
by hannibellemo (Apr 8)

Hi, Barbs, #1307 here! I follow the group posts on Facebook.
Pat Otto

by Barbs (Apr 4)

Hello
is there anyone who remembers Zavie's zero Club? We're trying to reunite old members
Category: Uncategorised

Replies: 1

Last updated: 8 April 2022
rsgiles on 5 April 2022

Category: Uncategorised

Replies: 4

Last updated: 5 April 2022

MMR lost
by rsgiles (Apr 5)

I did lose about 20 pounds so far since 5 months ago. I cut almost all carbs and eat a lot of vegetables and chicken and fish but not that much. thanks for your help.

by scuba (Apr 5)

Regarding your diabetes:

https://www.masteringdiabetes.org/cure-for-diabetes-type-2/

Type 2 (non-insulin dependent) diabetes occurs through lifestyle and diet. Genetics influences whether we are

by rsgiles (Apr 5)

Thanks i hope it is an error because at the same time I just got told I have type 2 diabetes and now dont feel good because of that medicine. My glucose reading was 297 but now I have it down into

by scuba (Apr 5)

Rsgiles - That is a big jump and could easily be lab error. I would first test again to verify the measurement is correct.
Assuming it is correct, consider switching to a low dose dasatinib (20 mg
Category: Uncategorised

Replies: 4

Last updated: 5 April 2022
Kathyp on 3 April 2022

Category: Uncategorised

Replies: 3

Last updated: 5 April 2022

Covid positive and anti vital meds
by MarkP66 (Apr 5)

Hi.
I have CML (Age 56) and 14 days ago I tested positive on a lateral flow test. I had read on multiple cancer sites and the UK government web site that I may be eligible to

by Roza (Apr 4)

Hi David,
I was looking at the attached recently and the Appendix appears to indicate that CML could be excluded under certain circumstances such as being at the Chronic phase and on 1st line

by David Fitz (Apr 3)

Yes, you should be eligible for the antiviral medication.
You should ring 119 to discuss it. Have you been receiving ongoing communications from the NHS regarding your status as vulnerable? i.

by Kathyp (Apr 3)

Hi I’ve covid positive and I’m just wondering if I’m suppose to ring the dr about antiviral meds?
I was looking on the nhs website and it does say I’m in the category.
any
Category: Uncategorised

Replies: 3

Last updated: 5 April 2022
scuba on 25 March 2022

Category: Uncategorised

Replies: 8

Last updated: 30 March 2022

Treatment Free Remission (TFR) information:
by Vikram (Mar 30)

My plan is reduse dose slowly....
600 to 400 reduse......next pcr in April
If two continue pcr UNDETACTABLE..... 400 to 200 imtinib reduce......
After 200 dose if 2 pcr UNDETACTABLE.... 200 to 100

by scuba (Mar 28)

At 10 years undetectable, you are an excellent candidate to try treatment free remission (TFR).
You probably 'burned out' all of the LSC's by now!

by Vikram (Mar 28)

10 YEAR.... UNDETACTABLE
WITHOUT WATER LSC FAST DIVED.. (MY THINKING)
.. BUT. DON'T TRY....
THIS TIME IN INDIA SUMMER START....

STOP... FAST WITHOUT WATER.......

by scuba (Mar 28)

Vikram,
Never go without water. Ever. Water is vital for life. When fasting, good idea to add salt (1/4 teaspoon) to a glass of water as well so you get electrolytes.
Fasting is zero calories. Water
Category: Uncategorised

Replies: 8

Last updated: 30 March 2022
annie63 on 25 March 2022

Category: Uncategorised

Replies: 6

Last updated: 29 March 2022

Statins & K2
by annie63 (Mar 29)

Hi Sandy, thank you for the reply & the link . I found John very easy to watch & further supports my thinking that around how important or beneficial to know the questions to ask when at my

by annie63 (Mar 29)

Thank you for your detailed response. I’ll definitely look at prioritising the K2. If there are any potential side effects from K2 that you know about could you please let me know. I did

by annie63 (Mar 29)

Thanks for your reply John, it helps to know at times - that you are not alone. The statin is Rosuvastin 5mg, haven’t noticed any side effects.. yet ;)

by sandy craine (Mar 26)

Hi Annie,
Firstly, congratulations on your great response to TKI therapy.
I am not convinced that 5.5 should be considered 'high' enough as the only reason to take statins (which certainly
Category: Uncategorised

Replies: 6

Last updated: 29 March 2022
Felix on 28 March 2022

Category: Treating CML

Replies: 0

Last updated: 28 March 2022

VITAMINS UK
by Felix (Mar 28)

Hi All ,If anyone is looking for a good company to get vitamins from try NUTRAVITA.They are an amazing company with fabulous customer service .When you register with them you get a discount ,then
Category: Treating CML

Replies: 0

Last updated: 28 March 2022
rsgiles on 27 March 2022

Category: Uncategorised

Replies: 3

Last updated: 27 March 2022

Big inscrease in pcr very scared
by rsgiles (Mar 27)

In April of last year it was 0.017, in October it was 0.0025. It went down and then back up to the 0.2425. I don’t understand. Could the being diagnosed with the diabetes and a glucose of 297

by chrissie (Mar 27)

Hi
With a jump like that surely your hospital will ask for another blood test to confirm if this is an error or not. So many things affect this : how long did it take for the bloods to get tested? (

by rsgiles (Mar 27)

I’ve been taking gleevec since 2005 and switched to imatnib a couple years ago

by rsgiles (Mar 27)

Last October I had a per of 0.0025 and now this week it is 0.2425. I also just got diagnosed with diabetes 2. I am losing a lot of weight and don’t have appetite. My glucose went from 101 in
Category: Uncategorised

Replies: 3

Last updated: 27 March 2022
Maddie on 11 May 2021

Category: Uncategorised

Replies: 4

Last updated: 26 March 2022

New blood test
by Maddie (Mar 26)

They are happy. I am now down to 20 mg. If I stay. At .003 he said I may be able to do 20 every other day
I find out this April. Thanks foe asking. Where are you at

by coletsiona (Mar 26)

Congratulations! What are your thoughts about it? What did the doctor say regarding the results of your test? I'm asking because I want to be a phlebotomist, and I'm trying to learn

by Maddie (May 12)

May. Undetectable
March. .0187. 3.72
feb. .029. 3.55
had surgery and stop drugs for week
Nov. .055. 4.26
sept. .0126. 3.9
aug.

by David Fitz (May 11)

Hi Maddie -
That sounds promising! What was your previous result?
David.
Category: Uncategorised

Replies: 4

Last updated: 26 March 2022
johnw1001 on 13 February 2022

Category: Drug-drug interactions

Replies: 3

Last updated: 26 March 2022

Tki s and blood thinners
by DavidS (Mar 26)

Thank you John… I dont carry a card but will look into that.. Dave

by johnw1001 (Feb 16)

Hi David,
Thank you for sharing your situation and for informing us of what medications you are taking .Your blood thinner Rivaroxaban (Xarelto) is in the class of DOACs and ticks all the boxes of

by DavidS (Feb 15)

Hi.. for as long as I have been on TKI’s.. initially Imatinib, currently Bosutinib which is 3 years now I have also been taken Bisoprolol and Rivaroxaban for arterial fibulation and

by johnw1001 (Feb 13)

Hi All
Has anyone any experience of the interaction between any of the tki s and blood thinners.Historically warfarin was the usual blood thinner prescribed but one had to be monitored every month
Category: Drug-drug interactions

Replies: 3

Last updated: 26 March 2022
brandonromeril99 on 26 March 2022

Category: Uncategorised

Replies: 4

Last updated: 26 March 2022

Breathing issues
by brandonromeril99 (Mar 26)

My latest renal canal blood test shows that all my levels are within good range, but this is definitely something I’ll try thank you, And to answer your question about water, I drink a

by sandy craine (Mar 26)

How is your diet? are you eating and/or drinking enough water throughout the day. You may have an electrolyte imbalance which could be the cause of your symptoms.... sodium/magnesium/potassium

by brandonromeril99 (Mar 26)

Hi, yes both times negative on the covid test.

by sandy craine (Mar 26)

I assume you have a negative test for Covid - omicron Ba.2? which is spreading fast and is likely to be the dominant strain going forward.
Sandy
Category: Uncategorised

Replies: 4

Last updated: 26 March 2022
JohnFromChicago on 22 March 2022

Category: Uncategorised

Replies: 4

Last updated: 24 March 2022

Big Variance In PCR Results In Short Timespan
by kat73 (Mar 24)

John, I share your frustration, but I'm afraid we both (and others) need to calm down. What you describe is what happens to me all the time now (in the past 4-5 years) at the same institution,

by JohnFromChicago (Mar 23)

Hi Thomas thanks for your response I guess what I find the most confusing are the two undetectable results I received in the last 12 months alongside the new also higher results like the .08s. The

by thomas.c (Mar 23)

Another thing worth mentioning: i did notice some changes in the pcr testing ever since covid. Test results out way slower, not sure how that affects the sample quality, and also the number of blood

by thomas.c (Mar 23)

Going from .02 to .08 is ”just” 4x change, thats not even 1 log. I often got choppy results like that.
What i noticed is that 50mg is simply not enough for everyone. I have read
Category: Uncategorised

Replies: 4

Last updated: 24 March 2022
Justine on 11 March 2022

Category: Children & young people

Replies: 9

Last updated: 24 March 2022

Undetectable at 5 years
by annie63 (Mar 24)

Wonderful to hear your news Xx

by Justine (Mar 22)

Thanks Mil:

by Justine (Mar 22)

Thank you Sandy, and thanks for this website which has been so helpful to me over the years.

by Justine (Mar 22)

Thanks RaeB. Hang in there. I hope you are feeling good anyway, and hope you have a good relationship with your medical provider.
Category: Children & young people

Replies: 9

Last updated: 24 March 2022
SageH on 20 March 2022

Category: Treating CML

Replies: 2

Last updated: 23 March 2022

Dose Reduction on Sprycel
by thomas.c (Mar 23)

I feel your pain, but i’m afraid a dr will not recommend to do any change if the system works, and even though your feelings are valid, until there is something measurably wrong they will

by scuba (Mar 20)

Hi Sage,
I was treated on 20 mg dasatnib while still positive for CML, by Dr. Cortes (world expert in CML) and achieved non-detection status. I have since stopped all therapy one year ago and

by SageH (Mar 20)

I was diagnosed in June 2021 and started on 100 mg of Sprycel. Fortunately I had a very robust response, but suffered from fatigue, upset stomach, rashes, and headaches. Ultimately, I was able
Category: Treating CML

Replies: 2

Last updated: 23 March 2022
Deni H on 21 March 2022

Category: Side effects

Replies: 6

Last updated: 23 March 2022

Dasatinib and exercise
by sandy craine (Mar 23)

Pat.... yes x means a kiss.
Sandy x

by kat73 (Mar 22)

Deni - I second all that has been said about the 100 mg. You need to get that down as soon as you can - if you reach (have reached) MR3, you should definitely reduce. I don't know

by hannibellemo (Mar 22)

Hi, Deni,
I started on 100mg dasatinib in 2009 after imatinib and my liver refused to play well together. From Thanksgiving Day to March of the next year I experienced such fatigue that I often just

by Felix (Mar 21)

Hi, hopefully your BCR ABL will reduce quite quickly,if it does please don't struggle on 100 mg for very long ,you don't want to have pleural effusions which can happen on this dose .50 mg
Category: Side effects

Replies: 6

Last updated: 23 March 2022
Stewart Bliss on 15 March 2022

Category: Getting help

Replies: 7

Last updated: 21 March 2022

Does Taking Tasigna create some benefit against contracting severe Covid-19?
by sandy craine (Mar 21)

Hi Stewart,
Yes, I did form a support group back in late 1999 when I first came back from the US having taken part in the Phase ll trial of STI571 now known as imatinib/Glivec/Gleevec. Another

by Stewart Bliss (Mar 20)

Hello Sandy,
As I have just mentioned in a couple of replies to people who replied to my post..
Thanks for letting my original 'story' remain, because i should not have gone into
the

by Stewart Bliss (Mar 20)

Hi Norma,
My wife Maxine, is much more academic and clever than me, but I guess I am more extroverted and in her eyes
probably too talkative.

She has undertaken considerable research into m-

by Stewart Bliss (Mar 20)

Hello John,
If you don't mind my saying ' you write a very in depth and interesting post.
I don't know your occupation, but you seem very well 'versed' in in
Category: Getting help

Replies: 7

Last updated: 21 March 2022
VinayJagnani on 17 March 2022

Category: Blood tests

Replies: 5

Last updated: 19 March 2022

BCR-ABL %
by JohnFromChicago (Mar 19)

Age 34 here I was diagnosed at 28 my PCR result bounces between .02 and .08. Seems as of recent people have been seeing more fluctuations in their PCR results as well. I believe this maybe due to

by ColoradoGuy (Mar 19)

I would not say that it is common but it is nothing to worry about. Being under 1% good news, and .026 even better. I don't know your age but I have noticed on this and other forums that younger

by VinayJagnani (Mar 18)

Hello Friends,
Thanks everyone for the response. Its so reassuring to hear so positive response and happy to hear that this is common.
I feel so much better now.
Thank You.

by ColoradoGuy (Mar 17)

There is no reason to increase dose at these levels. You can remain here for months before you see another drop. Or it can increase slightly before coming down again. It is like small ripples
Category: Blood tests

Replies: 5

Last updated: 19 March 2022
sandy craine on 19 March 2022

Category: Uncategorised

Replies: 0

Last updated: 19 March 2022

COVID- BA 2 Omicron surge
by sandy craine (Mar 19)

Dr John Campbell update 18th March 2022: Omicron BA.2 cases surge, UK has pandemic record high infections.
https://youtu.be/c4DH4ws03PY
Category: Uncategorised

Replies: 0

Last updated: 19 March 2022
Norma_55 on 17 March 2022

Category: Uncategorised

Replies: 3

Last updated: 19 March 2022

Resistant cells to treatment?
by Norma_55 (Mar 19)

Ps it’s only just been discovered this week about the 5% that was on my second blood test. I’ve only been on Travsiga for a few months.

by Norma_55 (Mar 19)

by sandy craine (Mar 18)

Hi Norma,
Where are you being treated? I am surprised that your doctor has not investigated your apparent resistance before and allowed you to remain at 5% Bcr/Abl for so long. What is your

by Norma_55 (Mar 17)
Category: Uncategorised

Replies: 3

Last updated: 19 March 2022