CML Horizons 2024 Videos and Presentations

iCMLf Publicaions.

iCMLf Forum 2022: The Next Big Challenges in CML? Webstreams

iCMLf publications: A selection of interesting articles on CML from peer-reviewed journals

You are here

Forum

Tanya Cat on 17 March 2019

Category: Uncategorised

Replies: 18

Last updated: 10 April 2019

Do you know how you got CML?
by Tanya Cat (Apr 10)

Heaps of reading material here with excellent information!Thanks heaps for all of that!

by r06ue1 (Apr 10)

I wrote an article on this a while back. While I now believe that there is no direct link between Benzene and CML (other blood cancers most definitely) it does show you how toxic we have

by Andy (Apr 7)

Hi , i am not sure about the reasonbut i worked night shift for 2 years and with lot of work stress and irregular sleeping patterns could cause my illness . I have thought about this round and round

by Poppert (Apr 6)

I suspect something like stress or mental trauma for me too.
I had a personal crisis in 2013. It was devastating to me and it affected me both mentally and also indirect physically. I didn’t
Category: Uncategorised

Replies: 18

Last updated: 10 April 2019
Andy on 5 April 2019

Category: Side effects

Replies: 6

Last updated: 10 April 2019

Joint and muscle discomfort
by sorin real (Apr 10)

I'm on Tasigna. Being an inveterate consumer of curcumin and being curious to know if it is appropriate to take it with Tasigna, I wrote an email at Novartis headquarters in Switzerland.

by scuba (Apr 10)

Just to be clear.
Magnesium does not need to be taken with vitamin D. Magnesium is water soluble, vitamin D is not. Vitamn D is long lived in the blood (half life = 2 months). As long as vitamin D

by bendicco (Apr 10)

Just my thoughts, Magnesium should be taken with fit D. My oncology pharmacist has done research on Curcumin and warned me NOT to take its it may interfere with the med. I had been taking it for

by scuba (Apr 8)

Magnesium and Curcumin !!
Category: Side effects

Replies: 6

Last updated: 10 April 2019
Evoabbi1989 on 8 April 2019

Category: Food & fitness

Replies: 2

Last updated: 8 April 2019

Supplements
by cmljax (Apr 8)

Exercise, exercise, exercise. Whole foods diet with plenty of veggies for natural vitamins. Sunshine for Vitamin D

by scuba (Apr 8)

Do a search using the search box above (next to Account) for "supplements", "fatigue". You will see many posts on the subject. It has been covered extensively. If you have a

by Evoabbi1989 (Apr 8)

Hi All
I'm currently on 400mg of Imatinib (Gleevec) almost 5 months in. Wondering if anyone can advise on supplements for dry skin, fatigue and something to boost immune system?
Also what
Category: Food & fitness

Replies: 2

Last updated: 8 April 2019
Vijay Kumar Verma on 5 April 2019

Category: Treating CML

Replies: 5

Last updated: 7 April 2019

PCR@21 MONTHS
by Vijay Kumar Verma (Apr 7)

Side effect:- fatigue,swelling (moderate).sometime calf muscle stiffness with high decree of pain.6/4/2019 cbc report:-hg 11.20,rbc 3.30,pcv 32.50,mcv 98.50,mch 33.90,mchc 34.40,rdw 15.50,absolute

by Vijay Kumar Verma (Apr 6)

IRMA mutation test jan 2019,no mutation detected.

by Job Guerra (Apr 5)

Have you had mutation testing? Just wondering because our numbers are similar and I switched to Nilotinib from Dasatinib. Not a lot of research for 2nd gen TKI to another 2nd gen as most people

by Vijay Kumar Verma (Apr 5)

Next visit on 8th april.i was on nilotinib for 9 months, from june 2017 to feb 2018.3rd month pcr was 4.15%,6th month pcr was 1.77%,12th month pcr was 1.108%,18th pcr 1.016%, CML CP
Category: Treating CML

Replies: 5

Last updated: 7 April 2019
Sarah63 on 7 April 2019

Category: Treating CML

Replies: 0

Last updated: 7 April 2019

What ever happened to Fish Oil Trials?
by Sarah63 (Apr 7)

Anyone here familiar with the preclinical trials on fish oil and derivatives that cured leukemia in mice by killing the Leukemia Stem Cells?
Category: Treating CML

Replies: 0

Last updated: 7 April 2019
ThomasS on 20 March 2019

Category: Uncategorised

Replies: 14

Last updated: 7 April 2019

Retirement in the US
by Buzzm1 (Apr 7)

shweflen (U.S. LLS forum) purchased Imatinib Mesylate 90 X 100mg under the Cigna Medicarte Drug Plan for $395.42 which would likely indicate a roughly $500 price for 30 X 400mg. shweflen

by Tbrand (Apr 7)

I found on GoodRx several US pharmacy’s offering generic Imatinib 30 400mg pills for around 700.00. That looks positive.

by onekayaker (Apr 3)

Tbrand,
Marks Marine Pharmacy is Canadian based (brick & mortar) and ships to you in the US. My cancer mentor who lives here in Texas buys her gleevec there. You can buy the canadian

by Tbrand (Apr 3)

My research shows I can save min. 50% buying in Canada. I would rather use the savings for quarterly vacations in Canada. I do not qualify for subsidies and am not ok paying more. The system stinks
Category: Uncategorised

Replies: 14

Last updated: 7 April 2019
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