TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

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Dennis on 10 April 2019

Category: Uncategorised

Replies: 19

Last updated: 12 April 2019

25 years with CML
by ThomasS (Apr 12)

Dennis, Yes I had several side effects from 100mg of Sprycel. I had a much easier time with Gleevec, but it stopped working after 10 years. Terrible dreams all night long with 100mg Sprycel, no

by Dennis (Apr 12)

Ah sorry I’ve got my Tanya Cat mixed up with my Kat 73. 😀

by Tanya Cat (Apr 12)

Dennis I have not had stomach problems just mental issues and hormonal ones.Think I will stick on it too.Having said that,my blood tests are not improving but because I tolerate Glivec better than

by Dennis (Apr 11)

Tanya
yes I will stay on Imatinib. For many years it did cause me stomach problems, including diarrhoea. 12 months ago I went into A&E with severe stomach pains and was told I had a stomach
Category: Uncategorised

Replies: 19

Last updated: 12 April 2019
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
Vikram on 20 November 2018

Category: Clinical trials

Replies: 80

Last updated: 9 April 2019

PLEASE REPLY
by Vijay Kumar Verma (Apr 9)

Thanks,I am going to start ir from tomorrow

by Vikram (Apr 8)

Yes....... Wheatgrass
And GILOY juice.......
Home made........
Not Market (market wala pure nahi jyada pani wala hota hai)
No side effects........
Natural....................
TRY.......

by Vijay Kumar Verma (Apr 8)

Javera juice=wheatgrass juice?

Do you use home made juice or bottled one from the market.

by Vijay Kumar Verma (Apr 8)

Aiims,delhi.

Today meet the docter,to continue 600 mg,next pcr in september.hoping for the good.how long you are taking giloy and other juice.do you face any side effect.
Category: Clinical trials

Replies: 80

Last updated: 9 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
alison on 6 August 2018

Category: Treating CML

Replies: 17

Last updated: 2 April 2019

May switch to Bosulif -- Advice please
by alison (Apr 2)

@Steff, thanks so much for all that info. Good to hear you are doing well on 300. It seems that most of the really bad side effects are at 400 or 500 dosages.

by alison (Apr 2)

@chigi , how about any side effects? and are you still on 300 mg? thanks.

by chigi (Feb 23)

Hi Alison - sorry for delayed response. I started with 100mg, then 200mg after 3 days, then 300 mg after 3 days.
i take it at night after dinner. Hope this helps

by onekayaker (Feb 21)

Hi Alison,
I was switched to Bosulif from Sprycel after rejecting the latter. My doctor and Dr. Kantarjian (MD ANderson location) decided to put me on 100mg Bosulif and eased me into the the
Category: Treating CML

Replies: 17

Last updated: 2 April 2019
Justina on 16 December 2018

Category: Getting help

Replies: 19

Last updated: 1 April 2019

Diet for CML patient
by mozart8 (Apr 1)

Thank you so much for your response!

by kat73 (Apr 1)

Your doctor is right. It's way too soon to reduce dosage. The people who have the best chance at TFR (treatment-free remission) someday are the ones who have been at MR4 or

by mozart8 (Apr 1)

hello there, so good to hear that you have been undetected and are at 20mg sprycel! i am pretty newly diagnosed, started 100mg sprycel on 12/26. When I mentioned to my doctor about

by Karinne (Apr 1)

I would add that the grapefruit effect is well known. It interacts with CYP4A3 that is used to absorb and metabolize a big number of drugs. The effect could go either way, increasing or decreasing
Category: Getting help

Replies: 19

Last updated: 1 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
Dustylloyd on 21 March 2019

Category: Blood tests

Replies: 18

Last updated: 30 March 2019

Alcohol and Cml
by Diane CW (Mar 30)

Thanks Steff, I have been gradually increased to 400mg Bosutinib and this brought my bcr-abl down from 20% to 9.1%. Had another test done last week to see what it is now, will find out at my next

by onekayaker (Mar 27)

Oh...cranberry juice does lower platelet counts. I stopped drinking it even though I learned to enjoy it mixed with a fresh lemon. Incorporate foods that raise your platelets also.

by onekayaker (Mar 27)

Diane,
Rejected sprycel so I was "eased" into bosutinib at 100 mg 2 weeks, 200mg 2 weeks then 300mg and in just a few weeks I had responded so quickly they did no raise me to 400mg.

by Rick B (Mar 27)

I have a glass of wine or a beer, and maybe a second one, once a week, maybe. I do have a glass at parties, maybe 2. I spent almost all of last October in Europe - France, Spain, and
Category: Blood tests

Replies: 18

Last updated: 30 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