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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MartinZA on 8 June 2018

Category: Treating CML

Replies: 2

Last updated: 8 June 2018

Imatinib update
by MartinZA (Jun 8)

Hi there Kat and thanks for the kind words And especially for that important information.
I guess we win one battle and then cause secondary damage to ourselves with the drugs! When next I see my

by kat73 (Jun 8)

Martin - So happy you are feeling better! Keep an eye on #4, though, OK? They are finding more and more of this effect of imatinib on the kidneys (high creatinine levels, low eGFR) and

by MartinZA (Jun 8)

Hi everyone
Just over a month ago I wrote a detailed post about how I was switching from dasatinib to imatinib due to the unusual and terrifying side effect of swollen lymph nodes that mimicked
Category: Treating CML

Replies: 2

Last updated: 8 June 2018
alexmcpee on 6 June 2018

Category: About CML

Replies: 5

Last updated: 8 June 2018

Massage - Nilotinib
by alexmcpee (Jun 8)

Hi Martin!
Many thanks for your recommendation. I’ve only been on Nilotinib for about 6 weeks or so so it’s all very new to me. And raw!
I’d say the joint pain is more prevalent now 6 weeks in and i

by MartinZA (Jun 8)

Hi Alex
I would strongly suggest going for it and getting the massage done! However, I have a cautionary tale to tell that might help you:
Six months after my diagnosis, I decided to book

by MartinZA (Jun 8)

Hi Alex
I would strongly suggest going for it and getting the massage done! However, I have a cautionary tale to tell that might help you:
Six months after my diagnosis, I decided to book

by David Fitz (Jun 7)

Hi Alex, massage is a great help for stiff muscles. I don't see any reason to avoid any oils or anything. I suffer from stiffness too, not too bad really and probably just part of the ageing process
Category: About CML

Replies: 5

Last updated: 8 June 2018
alexmcpee on 7 June 2018

Category: Uncategorised

Replies: 2

Last updated: 7 June 2018

Normal spleen - exercise
by alexmcpee (Jun 7)

Hey David
Thanks for your response it’s appreciated!
Blimey you were lucky not have had it knocked hey! I too went to the gym and did some pretty heavy lifts 2 days before diagnosis! Lucky I didn’t

by David Fitz (Jun 7)

Hi Alex,
I managed to play a game of rugby the week before diagnosis (I was absolutely gassed a few minutes into the game though!) with a huge spleen. I was lucky I didn't do any damage to it!

by alexmcpee (Jun 7)

Hi,
Once your spleen returns to normal size (which mine has) is it ok to return to exercise? At dx I was told to avoid but that’s because it was massive.
And are there any known forms of
Category: Uncategorised

Replies: 2

Last updated: 7 June 2018
bizweep on 7 June 2018

Category: Clinical trials

Replies: 1

Last updated: 7 June 2018

Reduced Dossage
by cmljax (Jun 7)

I started on 600 MG/day at Dx in October 2016; hit MMR in less than 90 days. Due to some unusual and fairly serious side effects, my oncologist authorized a series of fairly rapid dose

by bizweep (Jun 7)

Hi all, I've been on Tasig from Dec 2012. 19 of 22 have been 0.00. I probably should have been in a trial for elimination of the drug but the Dr was not interested. No question this is a miracle
Category: Clinical trials

Replies: 1

Last updated: 7 June 2018
Trevorp93 on 7 June 2018

Category: Treating CML

Replies: 4

Last updated: 7 June 2018

3 month check up pcr
by RC Kirk (Jun 7)

If your PCR test result is less than five percent at three months, then that is usually a sign of good response to your medication and that you're headed in the right direction. When I began

by AlastairC (Jun 7)

Trevor I suggest you go to the templates page on this site and download the two templates on the right hand column for early conversations with your treatment team and monitoring your blood results

by Trevorp93 (Jun 7)

Thank you I don’t understand anything right now but I’ll ask again when I see him. I just remember saying that I had 1 percent in my bone biopsy of when I am in the chronic phase to the accelerated

by RC Kirk (Jun 7)

Well, your questions can't really be answered unless you're sure which tests you're referring to.
Bone marrow tests are generally visual tests where the pathologist examines the samples and
Category: Treating CML

Replies: 4

Last updated: 7 June 2018
robert mcadie on 5 April 2018

Category: Blood tests

Replies: 14

Last updated: 6 June 2018

Consultation
by robert mcadie (Jun 6)

Just got results of 1ST BCR-ABL since going drug free 6 weeks ago. Everything is looking good with the result being 0.002
Robert is feeling really tired and has a fair bit of bone pain but is loving

by robert mcadie (Apr 22)

Will do, hopefully starting tomorrow

by robert mcadie (Apr 22)

Will do, hopefully starting tomorrow

by cmljax (Apr 21)

So Robert is trying cessation and not dose reduction? Whatever the case, please keep us informed. We'll be keeping our fingers crossed
Category: Blood tests

Replies: 14

Last updated: 6 June 2018
tanyat on 11 May 2018

Category: Uncategorised

Replies: 3

Last updated: 5 June 2018

Hi
by Romo (Jun 5)

If you don't talk we don't know you.
Romo

by Romo (Jun 1)

Is everything still OK?
Are you still with us.
Romo

by Romo (May 11)

Romo here,
I’ve been taking sprycel for 16 months.
Been doing OK, and back to pretty much normal.
Tell us about yourself.
romo

by tanyat (May 11)

New to CML taking sprycel for 3 months
Category: Uncategorised

Replies: 3

Last updated: 5 June 2018
alexmcpee on 31 May 2018

Category: Uncategorised

Replies: 14

Last updated: 4 June 2018

New CML'er
by alexmcpee (Jun 4)

Hi there!
It certainly is a good place and resource for sure. You don't realise how valuable these groups are until you are in a similar situation isn't it.
Rollercoaster is the word I would use for

by alexmcpee (Jun 4)

Hi Kathy,
Thats extremely kind thank you. I have asked about some initial counselling. I thought it would be a good idea to start now than wait until it builds up and I explode lol.
So glad you've

by alexmcpee (Jun 4)

Hi David,
Haha yes slightly unwanted i'd say :-)
That is a very similar story isn't it. Wow that's great I am glad you are doing well. I hope I do as well, its certainly a rollercoaster of up and

by T and M (Jun 1)

Hi Alex and welcome. On my first post, I was told it was a great place to meet other CML people 'in the wild.' :-) Our story is nearly a ditto of your own. My husband was
Category: Uncategorised

Replies: 14

Last updated: 4 June 2018
Dean on 2 June 2018

Category: Blood tests

Replies: 6

Last updated: 3 June 2018

BCR ABL levels
by Dean (Jun 3)

Thanks David.

by David Fitz (Jun 2)

Abl is expected in a healthy patient, so there’s no “normal” level really. If you have as many BCR-Abl genes as Abl genes you’ll be 100% on your PCR. If there’s 1 BCR-Abl for every 100,000 Abl then

by Dean (Jun 2)

Thanks for the info. My 2 tests were 3 months apart.

by Dean (Jun 2)

Thanks. The two tests were 3 months apart. What would be the normal level of abl - if there is a normal. As the BEC abl went down I expected the abl to go up.
Category: Blood tests

Replies: 6

Last updated: 3 June 2018
William1567 on 28 May 2018

Category: Treating CML

Replies: 11

Last updated: 2 June 2018

Any consequences of Gleevec dosage shuffle?
by William1567 (Jun 2)

Thank you, scuba!

by cmljax (May 31)

OK - so my take away for me is that the answer to my question is yes if for no other reason than the fact that the CML cells of the current close exist is greater and increasing numbers. The good

by scuba (May 31)

The chance of mutation always exists. When it does happen, the mutated cell is a new condition that the body may or may not recognize as aberrant and destroy it. In the case of TKI being

by cmljax (May 31)

Absolutely a wonderful explanation - thanks Scuba. But, and I might just be a bit dense here, I don't see a simple direct answer to the question I posed:
"please advise whether or not the
Category: Treating CML

Replies: 11

Last updated: 2 June 2018
Kathyp on 30 May 2018

Category: Blood tests

Replies: 7

Last updated: 1 June 2018

Is glivec classed as chemo
by Kathyp (Jun 1)

Justine no need to apologise, I’ve been taking it 15 years and didn’t know if it was or wasn’t xx

by scuba (Jun 1)

Click link below - another way to think of "chemo" and the drugs we take to treat CML:
http://chemoth.com/types/kinaseinhibitors
The article above is a good summary on how TKI's are a very different

by David Fitz (Jun 1)

It’s a surprisingly murky one, as I understand it. The term “chemotherapy” means different things to a clinician compared to an insurance underwriter. For example, my private medical insurance

by Justine (Jun 1)

I apologize, Kathy, I guess I was wrong. Good to know the correct answer.
Category: Blood tests

Replies: 7

Last updated: 1 June 2018
Romo on 28 May 2018

Category: Uncategorised

Replies: 1

Last updated: 31 May 2018

Thank You.
by tiredblood (May 31)

Happy belated Memorial Day.

by Romo (May 28)

In America is is Memorial Day.
A time when we revere solders past that gave us our freedom.
We also remember our English allies.
General Montgomery, Winston Churchill, Wingate and
Category: Uncategorised

Replies: 1

Last updated: 31 May 2018
r06ue1 on 29 May 2018

Category: Uncategorised

Replies: 6

Last updated: 30 May 2018

Increased Risk of Secondary Cancers
by cmljax (May 30)

Felix - the post was not meant to frighten anyone; just to raise awareness of a potential risk to us CML'ers in hopes that we all will take good care of ourselves to tip the odds of more cancer back

by r06ue1 (May 30)

I wouldn't worry about it too much and there has been lots of good news in recent years of curing CML. Just take care of yourself; exercise, eat well, stay out of the sun and you should be

by Tbrand (May 30)

Basically the same stats for coffee drinkers and bacon lovers. The Sweds obviously are at greater risk from over indulgence of tanning products.

by Felix (May 29)

Thank you so much for this piece of news, haven’t we got enought to worry about without being told this.We all know it’s possible but we don’t want to keep being reminded with posts like this ,I don
Category: Uncategorised

Replies: 6

Last updated: 30 May 2018
Melanie B on 27 May 2018

Category: Uncategorised

Replies: 2

Last updated: 30 May 2018

Personal message
by Melanie B (May 30)

Thanks David for the explanation. I thought maybe I just wasn’t seeing the link to do so.

by David Fitz (May 28)

Hi Melanie,
Not directly, no. We are looking at implementing this in the future though.
But if you email cmlsupportgroup@gmail.com with details of the person you want to contact, we can contact them

by Melanie B (May 27)

Is there a way to do a personal message between members without posting to the group?
Category: Uncategorised

Replies: 2

Last updated: 30 May 2018
Tedro on 28 May 2018

Category: Drug-drug interactions

Replies: 2

Last updated: 28 May 2018

Quick help?
by David Fitz (May 28)

I was given allopurinol a few years back. I was not given any warning about time to take it, or avoid taking it with the TKI. I took it at the same time.
The drugs.com interactions checker

by LouiseS (May 28)

My husband took both at the same time. Drink lots of water to keep yourself hydrated. Best wishes Louise

by Tedro (May 28)

Hello, I'm in the US.
I will start Sprycel (od) today. I have already started Allopurinol (bd).
Can I take them together, that is, at the same time?
Or is better if I separate the times. I would
Category: Drug-drug interactions

Replies: 2

Last updated: 28 May 2018
Romo on 26 May 2018

Category: Uncategorised

Replies: 5

Last updated: 28 May 2018

Smell the Roses.
by Romo (May 28)

Cancer stem cells are as individual as people.
You are not going to know all people by knowing one.
CML stem cells can just as easily be breast cancer stem cells.
Stem cells are their own

by scuba (May 26)

It will be my two year mark having been PCRU.
But you have a point. I probably don't need to wait that long to try. We'll see how it goes.

by cmljax (May 26)

We are all watching your experiment with great interest Scuba, but why wait til July 2019 to try cessation?

by scuba (May 26)

Yes and no ... indeed research in CML "cure" has moved on largely because there are so many other cancers where there are no "TKI's". In fairness to them, it is best resources are directed in
Category: Uncategorised

Replies: 5

Last updated: 28 May 2018
AriesStar on 26 May 2018

Category: About CML

Replies: 4

Last updated: 27 May 2018

Imatinib to Desatinib
by LouiseS (May 27)

Hi Aries
headaches are a very common side effect when you start on Dasatinib. Drinking a lot of water helps with that and I believe for most people those tend to go away over time as your body

by Gitel (May 26)

I cannot agree. The only information provided is on the side effects. There is no way to judge whether the change in medication was warranted without knowing anything about the blood test values,

by cmljax (May 26)

Your doc switched your meds way too soon. Side effects come and go and as long as they are fairly tolerable, you should stay on the first TKI for at least 9 - 12 months to see how your PCR

by Gitel (May 26)

Diagnosed Dec 1 2017. Mayo Clinic. started on Imatinib but a three month trial showed I was resistant to it. Was switched to dasatinib, 100 a day. It seems to be working but BCR Abl test will be at
Category: About CML

Replies: 4

Last updated: 27 May 2018
loafer on 25 May 2018

Category: Uncategorised

Replies: 4

Last updated: 26 May 2018

PCR going the wrong way
by loafer (May 26)

Thank you cjmax, this group I see is by the book if you are not within the guidelines than it is time to try the next TKI. I have a friend at 16.0 PCR taking 100 mg Sprycel, after several months PCR

by cmljax (May 26)

Your are not that far from MMR and the trend was all good until the May test. The trend reversal should be confirmed with another PCR in 4 - 6 weeks. If it continues to rise, then mutation testing

by loafer (May 25)

Thanks Scuba printed it along with some info from Treys Blog, this group is set in there ways, using strict NCCN Guidelines, when I asked about dose reduction it was not received very well. I feel

by scuba (May 25)

Read this thread:
https://www.cmlsupport.org.uk/thread/12309/higher-dose-dasatnib-causes-l...
Share with your doctor. You might try 50 mg and see what happens before switching to Tasigna.
Category: Uncategorised

Replies: 4

Last updated: 26 May 2018
cmljax on 23 May 2018

Category: Side effects

Replies: 5

Last updated: 26 May 2018

The heart attack that wasn't
by cmljax (May 26)

And the beat goes on (no pun intended). What will the next bizarre side effect be?

by tiredblood (May 25)

I did the cardiac work up thing early on with Tasigna. I pulled off into a parking lot and pulled out my stethoscope on my way home from work one day, thinking I’ve got to get this checked out. Cut

by r06ue1 (May 25)

Been there, done that, went through the entire regimen and they didn't find anything. Imatinib for me.

My guess is that our medicines just aren't good for our good and

by cmljax (May 24)

I do take 400 mg of Magnesium Taurate right before bed. I still have occasional "benign" premature atrial contractions, but they are much less frequent when I was on higher doses of Tasigna,
Category: Side effects

Replies: 5

Last updated: 26 May 2018
Mike B on 19 May 2018

Category: Side effects

Replies: 4

Last updated: 26 May 2018

Bosutinib and elevated Liver values
by sandy craine (May 26)

You could try supporting your liver with Milk Thistle and if you can cut out anything that places extra strain on your liver - painkillers, alcohol etc.
I suspect it may be dose-related - a hot

by pmlogg (May 25)

I was started on Bosutinib going on 3 years ago. At just over 6 weeks from starting on 500mg I was feeling so ill I called and was brought in for a blood test. That showed my ALT at over

by Mike B (May 21)

Thank you. I appreciate you sharing your experience. Hoping it clears up for me without having to stop taking the TKI.

by Melanie B (May 19)

When I first started Bosulif, my alt and ast were elevated. The point where my Dr would require a pause was when they were 4 times the normal range. That only happened once and we just reduced
Category: Side effects

Replies: 4

Last updated: 26 May 2018