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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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
ciprians on 20 October 2017

Category: Side effects

Replies: 4

Last updated: 27 March 2019

Nigh sweats
by ciprians (Mar 27)

Hello SorubhMaggo,

How did the sweats come up? Is everything all right with you now? Since the previous post, I've experienced sweats like this but always they went away.

by SorubhMaggo (Nov 19)

It was last year December 2017 when I was diagnosed with CML with quite similar symptoms as Ciprians. Along with 2 months of history of night sweat which gradually increased, I went for a

by ciprians (Oct 20)

Thank you for the fast response. I discussed with my hematologist today, she said that, given to my most recent PCR I am on the safe side, we will repeat it in December. I will see in my hematologic

by davewell (Oct 20)

Hello.
Well, first of all I'd suggest you talk to your doctor about this; he'll be the one to dispel any unwarranted fear, or to suggest remedies if needed.
Having said that...
Night sweats were
Category: Side effects

Replies: 4

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 on

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
Philiptibbs on 24 March 2019

Category: Side effects

Replies: 3

Last updated: 25 March 2019

Oncologist says CML doesn't cause pain ????
by David Fitz (Mar 25)

I had bad (Grade 3/4) bone pain and neuropathy with imatinib. It’s common enough but usually goes away after a few weeks / couple of months but in my case it didn’t. My doctor wanted to

by AlastairC (Mar 24)

It may be right that the CML does not cause the pain, but it is most likely the TKI your oncologist is prescribing is causing it - you could suggest he reads the leaflet which comes with the

by Job Guerra (Mar 24)

Sounds like a new oncologist is exactly what you need. I had a different one for 6 months due to being away for work and he was a jerk. You want someone who actually takes a second to hear you out

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
Category: Side effects

Replies: 3

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
scuba on 21 March 2019

Category: Uncategorised

Replies: 0

Last updated: 21 March 2019

Trisomy 8
by scuba (Mar 21)

Anyone exhibit chromosome abnormalities such as trisomy 8 ? Anyone who is MMR or PCRU?
Just curious if most people who have put CML into remission (PCR <0.1%) still have any chromosomal
Category: Uncategorised

Replies: 0

Last updated: 21 March 2019
scuba on 10 March 2018

Category: Food & fitness

Replies: 3

Last updated: 21 March 2019

Shitake mushrooms
by scuba (Mar 21)

Just had a bunch (shitake mushrooms) tonight! I have them in fits and spurts.
Sauteed gently in a bit of butter and then tossed in with broccoli. Seasoned with a bit of olive oil and apple cider

by EvaH (Mar 20)

Hilarious....I had a reaction to undercooked shitake mushrooms, rare but it does happen. Thought I was developing shingles!!
I´m pretty sure I´ve eaten shitakes before, *maybe* it had

by Romo (Mar 10)

Wouldn’t it be funny if it only worked if you had to
...eat the mice to get the affect.
The mice becomes the vaccine.
Would you eat the mice with Shitake mushroom and a cream cheese sauce?
I

by scuba (Mar 10)

If you like Shitake mushrooms - eat up!
https://www.cancertherapyadvisor.com/fact-sheets/cancer-ahcc-fact-sheet/...
Category: Food & fitness

Replies: 3

Last updated: 21 March 2019
Mike1523 on 12 March 2019

Category: Side effects

Replies: 7

Last updated: 20 March 2019

Side effects
by EvaH (Mar 20)

Have you checked for other causes? Obviously TKIs are the prime suspect but low B vitamin levels might also cause fatigue/brain fog

by Ray Sell (Mar 16)

Hey Mike I was diagnosed Aug 2016 and started with 600mg Imatinib. Jan 2019 was lowered to 400mg. I do feel some better, but have to pick my battles. Ditto what everyone is

by Justine (Mar 14)

Hi Mike, I have had similar experience to yours. Fatigue is persistent, and absolutely does affect my ability to think clearly. Dx April 2017 -- almost 2 years! -- and on 400 mg Imatinib ever since

by kat73 (Mar 12)

The fatigue you describe is very familiar to almost all of us. For me, it was far worse on Gleevec than on Sprycel. I finally got my energy back after dropping another med I was on (
Category: Side effects

Replies: 7

Last updated: 20 March 2019
Isla D on 14 March 2019

Category: Uncategorised

Replies: 4

Last updated: 20 March 2019

Shingles and TKIs
by EvaH (Mar 20)

Ive been on 500mg valacyovir daily since I got CML in 2016
It messes with my digestion a bit but otherwise it does its job. Sorry about the shingles...thats not really a fun type of herpes to have

by Harriet (Mar 17)

hi i had a really severe herpes simplex outbreak and my doctor prescibed the same and here in Norway they cross reference all meds for interactions, take it,i have known several people who have not

by Isla D (Mar 14)

Thanks very much John for taking the time to research and reply.
I think the post you are referring to might be: https://www.cmlsupport.org.uk/thread/8243/shingles
My GP did suggest I get the

by johnw1001 (Mar 14)

I googled "Valacyclovir and Glivec" to see if there any known drug interactions and some are cited from FDA in USA but the numbers of patients involved seem to be small.I also googled
Category: Uncategorised

Replies: 4

Last updated: 20 March 2019
Ontasigna on 20 March 2019

Category: Food & fitness

Replies: 1

Last updated: 20 March 2019

Tasigna and Cough
by sorin real (Mar 20)

I'm on Tasigna, too.Generally , I eat a lot of curcumin and bee products and I do not really have cold problems.

However, when it happens, I take for cough raw honey. Buckwheat honey is the

by Ontasigna (Mar 20)

Hi there,
I am finding it difficult to avoid people with cough. However, due to pollution, pollens and changing weather cold and cough are inevitable.
How do you all combat cough. What cough
Category: Food & fitness

Replies: 1

Last updated: 20 March 2019
Felix on 10 February 2019

Category: Drug-drug interactions

Replies: 4

Last updated: 20 March 2019

Antibiotics Raised BCR ABL
by Felix (Mar 20)

Thank you Alastair,Doctors insisted that this doesn't happen but it clearly does.So glad you are doing well ,keep up the good work .Regards ,Denise.

by AlastairC (Mar 20)

Hi Denise, sorry to hear you have been through the hassle for no reason. I have had a couple of instances when my BCR ABL has gone up when I had infections; I thought it was a side effect of my

by Felix (Mar 20)

Hello, it seems infection can raise your BCR -ABL But no one would listen to me .Had two small rises when on antibiotics so Docs said I must have Bone marrow test and change to Dasatinib.I

by David Fitz (Feb 10)

I haven't heard of this before, and besides a CYP3A4 interaction (look at drugs.com interaction checker) I can't really see, in my uneducated view anyway, how antibiotics could impact a PCR
Category: Drug-drug interactions

Replies: 4

Last updated: 20 March 2019
Felix on 17 March 2019

Category: Uncategorised

Replies: 9

Last updated: 19 March 2019

One week on Dasatinib and I feel great
by kat73 (Mar 19)

Ah, Denise, of course - I forgot I was on the British site, since I monitor both. Well, come a-cropper is also a Midwestern US saying, or at least it was in my parents' day. (Dayton

by Felix (Mar 18)

Haha ,"come a cropper" ,a phrase us Brits use when we fail badly .

by kat73 (Mar 18)

I started at what was then the standard dose for dasatinib, 100 mg, but I didn't stay there long. I was in transition from one onc to another, one center and lab to another, and I had a

by Felix (Mar 17)

Hi Kat ,did you start on a higher dose and have problems .This is very early days for me on this I am sure I will probably come a cropper at some time with my Luck , Denise.
Category: Uncategorised

Replies: 9

Last updated: 19 March 2019