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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
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
sandy craine on 24 June 2011

Category: Uncategorised

Replies: 2

Last updated: 26 May 2018

Bafetinib (INNO-406) dual Bcr/Abl + Lyn protein kinase inhibitor
by sandy craine (May 26)

Just did a brief search and it seems to have disappeared - at least for CML. I found an update via clinicaltrials.gov - here- using bafetinib in high grade glioma and metastases which

by RC Kirk (May 24)

Does anyone know what has become of bafetinib? I checked the CytRx Corporation website and couldn't find any mention of it. Did it cause some terrible side effect?

by sandy craine (Jun 24)

Bafetinib (formerly known as INNO-406) is an orally bioavailable, rationally designed, dual Bcr-Abl and Lyn-kinase inhibitor. According to a study published in the journal Blood (Dec. 1, 2005),
Category: Uncategorised

Replies: 2

Last updated: 26 May 2018
scuba on 24 May 2018

Category: Uncategorised

Replies: 7

Last updated: 26 May 2018

I am very sad ...
by Romo (May 26)

Second hand Grill smoke.
Stand away from the Grill, eat the food, bad also.
Makes you want to give up on being serious.
Romo

by kat73 (May 25)

Justine - I read that, too. Very discouraging, but what can you do? Every yin has a yang.

by r06ue1 (May 25)

There are far more harmful chemicals in our environment (air, water, soil) and foods/beverages than you need to worry about from sausage, bacon and alcohol.

http://blog.

by Justine (May 25)

This is interesting too. Also not very happy. I'm not sure I understand macrophages.
https://www.theatlantic.com/magazine/archive/2018/05/barbara-ehrenreich-...
Category: Uncategorised

Replies: 7

Last updated: 26 May 2018
Adeola on 24 May 2018

Category: Treating CML

Replies: 2

Last updated: 25 May 2018

Swollen legs and ankle
by Adeola (May 25)

Thank you so much I will try that

by Tbrand (May 25)

I had this the first 3 months. Wore compression stockings which helped a lot as well as soaking in epson salt bath and then it was gone.

by Adeola (May 24)

help!! My legs and ankles are so swollen. I am on Gleevec is this normal? Anyone know the risen why and how to reduce swelling ?
Category: Treating CML

Replies: 2

Last updated: 25 May 2018
MJP on 23 May 2018

Category: Uncategorised

Replies: 7

Last updated: 24 May 2018

Hello and a question re: CML and total thyroidectomy
by MJP (May 24)

Quite Interesting.
As part of my treatment for thyroid cancer part of the protocol is TSH suppression. While I’m no longer kept below 0.5 (heart palpitations were a bit much) I’m

by kat73 (May 23)

I had a subtotal thyroidectomy for what turned out to be benign adenomas, in 1979. Like you, I was diagnosed with CML inadvertently, on a routine physical, in 2009. On Gleevec at first

by MJP (May 23)

The following may be of interest to you. There is a link at the bottom of the abstract to the full text.
Thyroid dysfunction caused by second-generation tyrosine kinase inhibitors in

by AlastairC (May 23)

Hi Mark, I'm in the UK diagnosed in 2007 so just past 11 years on imatinib, mainly on the standard 400mg dose but for the last 8 months on a reduced 200mg. Appointment next month to check I am still
Category: Uncategorised

Replies: 7

Last updated: 24 May 2018
Richd478 on 11 May 2018

Category: Treating CML

Replies: 4

Last updated: 23 May 2018

Dealing with CML
by Richd478 (May 23)

Thank you for your response. My doctor has noticed that for the first 7 years of gleevec my crestinine levels have been between 1.0 and 1.3, however, over the last month they have jumped to 1.54 and

by kat73 (May 12)

Sorry this took me awhile to respond to - I wanted to get some papers together. Yes, Gleevec can raise creatinine and tapdance on your eGFR. When it happened to me in 2010, there was

by David Fitz (May 11)

Alastair, you're absolutely right. The general consensus with clinicians that are leading in this field is that fathering a child on imatinib is safe. The jury is still out on other TKIs, but the

by AlastairC (May 11)

Rich, David knows more about this than I do, but there have been several threads in the past on fathering children on imatinib, and the consensus is that it is not an issue, Much simpler than if a
Category: Treating CML

Replies: 4

Last updated: 23 May 2018
David Fitz on 22 May 2018

Category: Uncategorised

Replies: 0

Last updated: 22 September 2018

New joiners: your account must be verified before you can post messages
by David Fitz (May 22)

Due to an increased level of spam on this forum I've had to take the step to validate new joiners to this group. I'm sorry I've had to do this, but the level of spam (particularly overnight when I
Category: Uncategorised

Replies: 0

Last updated: 22 September 2018
Lucas on 20 May 2018

Category: Uncategorised

Replies: 1

Last updated: 22 May 2018

tasigna's hair loss x minoxidil
by Romo (May 22)

Sad to say it’s not going to work.
Rogaind is topical and TKI’s are systemic.
Rogaind stimulates hair follicles on the top of
your skin and TKI’s kill cell reproduction under your skin.
I

by Lucas (May 20)

hey, guys! hope everyone is fine! a friend of mine has a doubt: she's a female on tasigna for a couple of years and she's having a huge hair loss. a dermatologist told her to use rogaine (minoxidil
Category: Uncategorised

Replies: 1

Last updated: 22 May 2018