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Tanya Cuffe on 3 April 2022

Category: Uncategorised

Replies: 1

Last updated: 26 April 2022

Worsening insomnia. Is 5HTP helpful and safe?
by EvaH (Apr 26)

5htp is certainly safe, i don't know if it helps insomnia but it can't hurt
Keep up with the magnesium even if you feel its not working
Are there lifestyle changes you can make?
Also many sleep

by Tanya Cuffe (Apr 3)

Hi friends! I am not sleeping and it’s getting worse. Seen doctors/naturopaths. Used melatonin and magnesium successfully for 6months now stopped working. Want to try 5HTP. Has anyone used
Category: Uncategorised

Replies: 1

Last updated: 26 April 2022
Justine on 14 April 2022

Category: Side effects

Replies: 2

Last updated: 24 April 2022

Pain and bruising
by Justine (Apr 24)

Thank you Sandy. I have been increasing Vitamin C foods and will see clinician next week. Thank you so much for sharing your experience and knowledge with this community. It is nice to have a place

by sandy craine (Apr 19)

Hi Justine,
you say you have anaemia which might be a clue to the increase in bruising you are suffering. If you increase your daily intake of Vit C this might support your iron levels. It is not

by Justine (Apr 14)

Hi, for a long time I’ve been doing really well but in recent weeks I have been getting bad bruises on back and hand, and feeling quite a bit of pain in my lower back and down my legs (like
Category: Side effects

Replies: 2

Last updated: 24 April 2022
Reilly9108 on 21 April 2022

Category: Children & young people

Replies: 2

Last updated: 22 April 2022

P210
by Reilly9108 (Apr 22)

Thank you Kirk for your response

by RC Kirk (Apr 22)

Hello Reilly,
If you have typical CML then the P210 type of BCR/ABL1 is the dominant form that's usually detected when testing for response to TKI therapy.
Your result of .062% is showing that

by Reilly9108 (Apr 21)

After 1 year p210 .062 was negative all along
p190 negative

why would p210 change?
I did switch labs not sure that has anything to do with it
Category: Children & young people

Replies: 2

Last updated: 22 April 2022
Yash on 21 February 2022

Category: Uncategorised

Replies: 10

Last updated: 22 April 2022

Please reply cml and gynecomastia surgery
by Yash (Apr 22)

gynecomastia surgery and cml (imtinib)....any problems after sergery???
PLEASE reply.........

by Yash (Mar 11)

????????????

by Yash (Mar 7)

No one.. Any experience?
If yes please... Share your experiences...

by Yash (Mar 2)

Any experience any surgery? (cml)
PLEASE reply
Category: Uncategorised

Replies: 10

Last updated: 22 April 2022
Kopex123 on 31 March 2022

Category: Uncategorised

Replies: 7

Last updated: 19 April 2022

Why I’m I crying
by israel (Apr 19)

Hey,
Few things can be more difficult than realizing that you don't know the right step to take, like this gentleman here who faced the reality of not knowing the "double step":
https

by Kopex123 (Apr 18)

Many thanks for your encouraging and kind words, hopefully with the counselling I can move on with a positive attitude. I’ve been on a Zoom support group which really helped but the emotions

by EvaH (Apr 14)

I had a relatively easy time (mentally) with CML initally when i was diagnosed 6 years ago.
I guess my straight line recovery to MMR helped with that and my attitude was that it was a hiccup i

by kat73 (Apr 12)

Dean - I second everything said here so far. I want to add to it. First, yes indeed, seek mental/emotional help in the form of therapy. It will help you, undoubtedly. There
Category: Uncategorised

Replies: 7

Last updated: 19 April 2022
Nicolem2022 on 10 April 2022

Category: Treating CML

Replies: 5

Last updated: 16 April 2022

Starting nilotinib - advice please
by Nicolem2022 (Apr 16)

Thanks Becca. I’m also starting on 300mg dose so I’ll bear in mind it might be much worse to begin with. I’ve got quite a lot of questions for the nurse next week relating to what

by cmhall604 (Apr 16)

Hi,
Just wanted to add that your blood panel might be out of whack at the beginning but should get back to normal levels over time. My wife had elevated liver enzymes (ALT and AST) and

by rebeccacrosby (Apr 15)

I was diagnosed in October and started Nilotinib in November. It was quite painful for a week as it killed the cells so quickly. I had horrible bone pain, particularly in my shins. Good news is my

by Nicolem2022 (Apr 15)

Thanks Justine
Category: Treating CML

Replies: 5

Last updated: 16 April 2022
cmhall604 on 11 April 2022

Category: Blood tests

Replies: 2

Last updated: 16 April 2022

Immature granulocytes in peripheral blood
by cmhall604 (Apr 16)

Hi Sandy,
Thanks very much for your reply. Got the results back yesterday and she's back to PCRU! I guess a little bit is nothing to worry about.
Cheers,
Chris

by sandy craine (Apr 13)

Hi Chris,
From what I understand, I don't think you need to be concerned. The appearance of myelocytes (1%) in your wife's peripheral blood is is probably due to an infection.
"

by cmhall604 (Apr 11)

Hello, I haven't posted in quite a while but my wife just had another checkup so I'm back with another question. She has been doing well over the past two years since diagnosis, reaching
Category: Blood tests

Replies: 2

Last updated: 16 April 2022
cousineg2 on 15 April 2022

Category: Clinical trials

Replies: 0

Last updated: 15 April 2022

Combination of Selenium with TKIs
by scuba (Apr 15)

I have taken selenium with dasatinib for several years (200 mcg). I no longer take dasatinib, but I continue to take selenium.
Category: Clinical trials

Replies: 0

Last updated: 15 April 2022
cousineg2 on 15 April 2022

Category: Uncategorised

Replies: -1

Last updated: 15 April 2022

How I met Zavie Miller...

Category: Uncategorised

Replies: -1

Last updated: 15 April 2022
MartinZA on 14 September 2018

Category: Treating CML

Replies: 11

Last updated: 15 April 2022

Update on moving "backwards" from dasatinib to imatinib
by MartinZA (Apr 15)

Hi abrahamlg
Thank you for your post! Sorry that I'm only replying to your questions now, but I haven't checked the forum in a while due to busy work deadlines.
First, I

by abrahamlg (Mar 29)

Hi MartinZA, Very sorry to bring back to life an old post. Nevertheless, the reason is because I switched backwards from dasatinib to imatinib 1 month ago.
I was researching info of doing this and I

by Rosiem (Sep 16)

Thank-you Scuba for your reply echoing Kirk's advice. This is something I will bring up with my consultant in a week's time. Meanwhile I am drinking carbonated water to help with the digestive

by Rosiem (Sep 16)

Thank-you Scuba for your reply echoing Kirk's advice. This is something I will bring up with my consultant in a week's time. Meanwhile I am drinking carbonated water to help with the digestive
Category: Treating CML

Replies: 11

Last updated: 15 April 2022
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