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Gian P on 5 April 2019

Category: Organising your life

Replies: 2

Last updated: 6 April 2019

CELL PHONES RADIATION WHILE CHARGING
by Nimbus2 (Apr 6)

The advice from the United Kingdom National Health Service appears at the link below:
https://www.nhs.uk/conditions/mobile-phone-safety/
There appears to be no conclusive evidence as to whether

by Harriet (Apr 6)

hi Gian,
i have actually been conscious of cell phones for years before diagnosis,it gets turned off at night and is not allowed in my bedroom,it is charged in a little room i have for hobbies and

by Gian P (Apr 5)

Does anyone take any extra precautions over this? when is not preferable to charge the phone? In the car? Next to your bed ( while sleeping )? Any of you knows of any founded researches? I found out
Category: Organising your life

Replies: 2

Last updated: 6 April 2019
bendicco on 1 April 2019

Category: Treating CML

Replies: 20

Last updated: 6 April 2019

And the anxiety builds AGAIN!
by cmljax (Apr 6)

YAY!!!! As Scuba would say, you are not going to die from CML - that is a tremendous number. next stop MR4.5 or better and probably as soon as the next PCR, which will still make you anxious :).

by Harriet (Apr 5)

yes it feels good,but the brain never stops he mentioned a slight elevation in s-albumin level and s-alat plus kalsium,but he said it was nothing to worry about,but the brain latches on to these

by bendicco (Apr 4)

So happy Harriet!!!!

by kat73 (Apr 4)

Great news, Harriett! Onward and downward!
Category: Treating CML

Replies: 20

Last updated: 6 April 2019
scuba on 5 April 2019

Category: About CML

Replies: 1

Last updated: 5 April 2019

'Hot off the press's ... '
by Damian Gabilondo (Apr 5)

Hello, I understand there are already ongoing studies of Inf + TKI, and there are also others of TKI + antibiotic, what I did not find are results, thanks for all the information. Sorry for my

by scuba (Apr 5)

C/EBPβ is a critical mediator of IFN-α-induced exhaustion of chronic myeloid leukemia stem cells.
https://www.ncbi.nlm.nih.gov/pubmed/30755436
Newly published research is showing that interferon-a
Category: About CML

Replies: 1

Last updated: 5 April 2019
Gian P on 3 April 2019

Category: Children & young people

Replies: 15

Last updated: 5 April 2019

Platelets level low
by Vijay Kumar Verma (Apr 5)

SCUBA you are great

by Gian P (Apr 4)

Thank you for your thorough explanation, so much that I don’t know yet:/
i will definitely try Beet and wheatgrass... these days flavor is not a priority, and will look into the other

by Gian P (Apr 4)

Thank you sir, i will certainly follow your advice and monitor my CBC closely, Platelets is the only test that fluctuate so much especially with Sprycel, i will tak to my Oncologist about reducing

by scuba (Apr 4)

Study the figures in the article below and you will get a feel for blood cell formation:
https://www.thermofisher.com/us/en/home/life-science/antibodies/antibodi...
Anytime a cell divides - and this
Category: Children & young people

Replies: 15

Last updated: 5 April 2019
grells on 2 April 2019

Category: Uncategorised

Replies: 3

Last updated: 3 April 2019

CML - Nilotinib - Low Ferritin
by grells (Apr 3)

Hmmm. Interesting. I am just menopausal now. And was a regular blood donor for many years before diagnosis 3 years ago. I have been taking over the counter supplements (

by scuba (Apr 3)

I have mild anemia due to lower red blood cell count which led to lower hemoglobin and hematocrit levels. I supplemented with a heme based iron supplement in order to "fill up" as many of

by cmljax (Apr 3)

I have been on Tasigna for 2 1/2 years and never had any below normal blood counts, so don't really have any advice. With you being undetectable for 18 months, have you been able to reduce

by grells (Apr 2)

Hello all. It's been a long time since I popped in here, but do spend a lot of time on the Facebook group. I have a question and wonder whether any of you have any thoughts/
Category: Uncategorised

Replies: 3

Last updated: 3 April 2019
snowman 35 on 31 March 2019

Category: Uncategorised

Replies: 4

Last updated: 1 April 2019

What about hand made cereal bars?
by snowman 35 (Apr 1)

I asked him about one year before if I have to look to the ingredients for pieces of grapefruit and told that this not necessary... Maybe I anderstood wrong.... I Spoke with him yesterday and told

by kali (Apr 1)

I meant to add that every winter I get a type of orange that are a combination of orange and grapefruit. They are awesome! I eat them and they have not hurt my PCR numbers.
I only do that for

by kali (Apr 1)

I don’t know the answer to your question, however, I would quit eating them to be sure.
Others on here who know more than me about interactions with TKI’s might chime in.
I would also

by kali (Apr 1)

I don’t know the answer to your question, however, I would quit eating them to be sure.
Others on here who know more than me about interactions with TKI’s might chime in.
I would also
Category: Uncategorised

Replies: 4

Last updated: 1 April 2019
Gitel on 15 March 2019

Category: Side effects

Replies: 17

Last updated: 1 April 2019

Lymphoma and CML. Anybody know anything?
by kali (Apr 1)

Very happy for you that it is not lymphoma!! What a relief you must feel. I wish you the best!

by onekayaker (Mar 30)

SWEET !!! Great news G. Very happy for you

steff

by mozart8 (Mar 29)

very glad to hear it is not lymphoma!

by kat73 (Mar 29)

Hurray! Hurray! Hurray! I know what you mean about unicorn-ness. My bazillion year old MIL has disasters, but they all get diagnosed and - amazingly - FIXED. And she just
Category: Side effects

Replies: 17

Last updated: 1 April 2019
Nimbus2 on 31 March 2019

Category: Uncategorised

Replies: 0

Last updated: 31 March 2019

Vitamin D
by Nimbus2 (Mar 31)

The UK Consumer Association magazine, Which?, takes a very negative view on the efficacy of vitamins and supplements. Vitamin D is the sole exception.
I found some staggering claims through an hour
Category: Uncategorised

Replies: 0

Last updated: 31 March 2019
Rick B on 27 March 2019

Category: Uncategorised

Replies: 2

Last updated: 28 March 2019

BCR-ABL1 latest score and a question
by Rick B (Mar 28)

Thank you!

by AlastairC (Mar 27)

Hi Rick,
The difference between your two numbers is within the range of accuracy of the BCR-ABL test. The fact that they effectively the same number is not an issue - you have got below 0.1% in 6

by Rick B (Mar 27)

I have greatly appreciated this site since I was diagnosed last summer. I have a question about the drops in my qPCR quantitative score.
BCR-ABL1 at diagnosis = 12.66%. Score after
Category: Uncategorised

Replies: 2

Last updated: 28 March 2019
Scottishmum on 24 March 2019

Category: Children & young people

Replies: 7

Last updated: 27 March 2019

My 19 year old son recently diagnosed with CML
by onekayaker (Mar 27)

Check out Alexa Score.....and Doris Muramatsu.....Laura Boyd

by Vikram (Mar 26)

.

by Irishmammy (Mar 25)

Hello, I'm sorry to butt in but I only check here now and again
I continue my travels with my young daughter and its never been a problem, I use a company called insurewith and you fill in a

by johnw1001 (Mar 24)

Hi there,
The advice given by other forum members is fairly comprehensive.Might I add on a few points .
The first six /twelve months can be quite tough mentally but if looked at in a positive sense
Category: Children & young people

Replies: 7

Last updated: 27 March 2019
JoeyD on 27 March 2019

Category: Uncategorised

Replies: 1

Last updated: 27 March 2019

Painful scalp
by onekayaker (Mar 27)

Sounds like the shingles......Not saying it is because shingles doesn't last that long. Just the pain you describe is exactly what a friend said it felt like. Was on her scalp.

by JoeyD (Mar 27)

I was diagnosed in April 2018 and commenced Imatinib. However, I didn't respond to it and was changed to Nilotinib in October. Having read other people's posts on this site, I
Category: Uncategorised

Replies: 1

Last updated: 27 March 2019
gof on 8 January 2019

Category: Organising your life

Replies: 7

Last updated: 27 March 2019

Welcome post
by gof (Mar 27)

Thank all of you for the replies. My wife stopped taking one of the supplements for her liver (there is no need now).. and problem disappeared. In leaflet it was mentioned about possible side

by Toni (Feb 7)

Hi, when I started on Nilotinib I suffered really bad skin, I’m not sure if the medical term but they call it chicken skin. It’s like permanent goose bumps. I started using childs farm

by Felix (Feb 7)

Hi, I use simple Vitamin E cream it's perfect for dry skin and rashes .Not sure if you are in the UK but Superdrug do a big pot of Intense Vitamin E cream and it's so rich .Put it on

by Evelinka89 (Feb 7)

This is hard to say...I mean which doctor to trust. Both tacrolimus and pimecrolimus are immunosupresive agents as well as corticosteroids, but with a little different mechanism of action. They are
Category: Organising your life

Replies: 7

Last updated: 27 March 2019
Vikram on 15 March 2019

Category: Uncategorised

Replies: 11

Last updated: 27 March 2019

How long time cml undetacktable possible?
by gof (Mar 27)

@onekayaker
Releated to this trial https://clinicaltrials.gov/ct2/show/NCT02689440 I wrote to Dr Kantarjian about results. He replied me that there are still no results for that.
Regarding hold

by scuba (Mar 21)

https://www.targetedonc.com/news/fda-puts-enrollment-hold-on-venetoclax-...
"The clinical hold does not affect any of the FDA-approved indications for venetoclax, which include the treatment of

by onekayaker (Mar 21)

MD Anderson testing a drug called venetoclax. Check that out. To be used in conjunction with your tki in testing now.

Steff

by Vikram (Mar 20)

Undetacktable (<0.0001)
No detected cell in test?
Means 1 luckemia cell 1000000?
1 luckemia cell 100000?
How many lsc (luckemia stem cell)?
Category: Uncategorised

Replies: 11

Last updated: 27 March 2019
muhammedmahmoud on 24 March 2019

Category: Treating CML

Replies: 5

Last updated: 25 March 2019

Tasigna vs. SPRYCEL?
by scuba (Mar 25)

John - nice summary.
Just reminds me of why I want to get off these toxic man made chemicals that are poison to our bodies - that just so happen - saved our lives.
Our goal - all of us - is to get

by johnw1001 (Mar 25)

Hi there,
One in 5 chance of pleural effusions with dasatinib and interacts with other drugs such as aspirin to cause bleeding etc.Professor Jane Apperley at Hammersmith in a blog suggested that if

by Naj (Mar 25)

Although I am taking Tasigna..I agree with David...Sprycel is much more convenient.
regards

Naj

by muhammedmahmoud (Mar 24)

Thank you.
Category: Treating CML

Replies: 5

Last updated: 25 March 2019
SaM4 on 1 March 2019

Category: Drug-food interactions

Replies: 11

Last updated: 24 March 2019

Questions for the Ladies
by SaM4 (Mar 24)

Thank you EvaH,
for your answer and your support.
Now i know there is somebody ,who is taking mini pill while on the treatment for CLM. So there is a possibility,instead of the spiral.
It is really

by EvaH (Mar 20)

I believe you when you say you know your body best!

I´ve been feeling like my periods got more painful in the past few years, even before 2016 when i got CML, I dont know if this aging

by Alaina (Mar 2)

Hi Sabrina,
Neither doctor has offered a solution to regulate cycles or manage symptoms. The gynocologist tested my thyroid levels to rule that out as the cause, but they were normal.
I recalled

by SaM4 (Mar 2)

Hi Harriet,
thanks for your answer.
it helps a lot. Really a lot. Because thanks to you and the other Ladies ,I have more answers. And I do not feel alone.
Sabrina
Category: Drug-food interactions

Replies: 11

Last updated: 24 March 2019
r06ue1 on 18 March 2019

Category: Blood tests

Replies: 4

Last updated: 24 March 2019

6 Month Genetic Testing in America?
by Philiptibbs (Mar 24)

I am not stable yet I was at 27% the last time I was tested and the last test that McLaren Karmanos Flint did on me the lab they used messed my test up so I don't know what I'm at and my

by onekayaker (Mar 19)

I too will be switched to 6 month cycle if my blood work is where there expect it to be and I am in MR4. She also said I could be anywhere I wanted to live and they would mail me a blood kit

by cmljax (Mar 18)

I have been at <.003% for nearly 2 years now. Approximately 1 year ago, my doc switched me to testing every 6 months

by scuba (Mar 18)

six month testing is routine for patients who have demonstrated stable disease below 0.01%. Once I achieved PCRU and held it for one year, I was also switched to six month cycles.
CML in chronic
Category: Blood tests

Replies: 4

Last updated: 24 March 2019
Nimbus2 on 20 March 2019

Category: Uncategorised

Replies: 4

Last updated: 24 March 2019

Imatinib on ebay
by Philiptibbs (Mar 24)

Thats crazy! You can't sell prescription drugs in the USA it's against the law. My Oncologist takes any extras and saves them for poor people or if your insurance is lapsed they give them to

by Nimbus2 (Mar 21)

I think that in the United Kingdom, all drugs returned to pharmacists are destroyed. My mother lived in the Canary Islands and there drugs returned to pharmacists were sorted and sent to poorer

by Felix (Mar 21)

Hi, maybe someone has changed to another TKI and has some over, they will only be destroyed .They could help someone out if eBay is cheaper than they are paying out for Imatinib.altho I would offer

by EvaH (Mar 20)

Woah bargin!! I pay 50 EUR per 400mg
Also generic drugs in india are around 200usd per month. Maybe its not NHS drugs but someone gray marketing?
I wonder why folks would not need them any
Category: Uncategorised

Replies: 4

Last updated: 24 March 2019
Nimbus2 on 9 March 2019

Category: Uncategorised

Replies: 15

Last updated: 24 March 2019

"Cannot move back to imatinib from second generation TKI"
by Philiptibbs (Mar 24)

If you work outside watch out with Tasigna. I can't take Tasigna because I work outside in the sun and it gave me very bad rashes and sun burn. i had to wear 70spf sunscreen and find long sleeve

by Job Guerra (Mar 21)

Just learned (on lls) that MartinZA did move from Dasatinib to Imatinib. What kind of numbers are you seeing for mutation analysis to be considered? I jumped from just above 0.1 to just above 1.0

by scuba (Mar 21)

Make sure you consider vitamin K2 and D3 together for arterial health.

by cmljax (Mar 21)

Thanks Scuba - I am going to have this conversation with both my GP and my oncologist and see what they say. I already do all the other stuff you suggest plus 2 miles per day 5 days a week on
Category: Uncategorised

Replies: 15

Last updated: 24 March 2019
Ontasigna on 23 March 2019

Category: Drug-food interactions

Replies: 2

Last updated: 24 March 2019

Tasigna : Diclofenac (oral, Gel)
by Ontasigna (Mar 24)

Thanks John. Appreciate your thoughts and suggestions

by johnw1001 (Mar 23)

Diclofenac should be fine to take with tkis but beware that there have been cases of severe stomach bleeding without warning so my GP told me so it is usually prescribed with a PPI -proton pump

by Ontasigna (Mar 23)

Hi all,
Has anyone tried taking diclofenac either oral or gel or spray to get relief from pain when on Tasigna.
I did check on drugs interaction site. It showed minor interaction.
Have you tried
Category: Drug-food interactions

Replies: 2

Last updated: 24 March 2019
Paul Packham on 22 March 2019

Category: Uncategorised

Replies: 2

Last updated: 22 March 2019

Living with cml
by Paul Packham (Mar 22)

Hi, I was on 100mg , was shaking all the time, then a month later the dose was dropped off to 50mg, the doctor says I'll get some side effects but I didn't think my eyes would get swollen, the

by Job Guerra (Mar 22)

Hello. Have you're side effects gotten better and are you meeting milestones? If you are then possibly reduced dose may help.

by Paul Packham (Mar 22)

Hi everyone,

I was diagnosed with chronic myeloid leukaemia in August 2018 was put on distinib, had a lot of side effects eyes swollen and ears, blurry vision , Moody , what else have I got
Category: Uncategorised

Replies: 2

Last updated: 22 March 2019