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

You are here

Forum

Victor Dax Jose on 12 August 2017

Category: Uncategorised

Replies: 32

Last updated: 30 July 2018

HI I'm Dax from the Philippines and was recently diagnosed with CML this year I just started taking Imatinib but its expired for 10 years
by David Fitz (Jul 30)

Forum Administrator Note:
While we completely understand that it can be difficult for some people to access the medication that they need, using this forum as a place to buy / sell or

by Ary Setijadi Prihatmanto (Jul 30)

Hi Levs,
I am interrested too. It is for my son with ALL with Phi+
Cheers,
Ary

by Philiptibbs (Jun 12)

I have 3 boxes of Tasigna 150mg capsules . Do you know anyone who would need them ?

by Victor Dax Jose (Jun 11)

Hi Debbie. Sorry for replying so late. The name of the seller in India is (removed) his number is +(removed) through WhatsApp. Just try asking how much plus shipping.
Category: Uncategorised

Replies: 32

Last updated: 30 July 2018
MartinZA on 27 July 2018

Category: Treating CML

Replies: 4

Last updated: 30 July 2018

Candida: hoax or not?
by MartinZA (Jul 30)

Thank you so much everyone! I think that the very best choice we have as CML patients is to stick with the TKIs and all this other stuff is incidental. Today I heard a discussion about

by JohnFromChicago (Jul 27)

Sounds like a hoax to me, especially the stop TKI part, haha. Although I will say it is interesting that I have always had a facial skin condition called seborrheic dermatitis which is caused

by davewell (Jul 27)

I feel your pain.
The way I solve the problem is, for the most part, not telling people I have CML. I am lucky enough to be generally healthy (I cannot type this with a straight face, I mean, I am

by David Fitz (Jul 27)

"He is encouraging me to stop imatinib and start on his diet plan."

This is the point that I would completely and utterly stop listening to anything he says.
There are of course valid reasons
Category: Treating CML

Replies: 4

Last updated: 30 July 2018
Silas Boccia on 26 July 2018

Category: Blood tests

Replies: 3

Last updated: 28 July 2018

Clarification on Quantitative and qualitative PCR
by Silas Boccia (Jul 28)

I'll ask my oncologist to order on the next PCR on both isoforms p210 and p190. It seems the safest path. Thanks

by alexmcpee (Jul 28)

Hi Silas,
My understanding is at diagnosis they only order checks for p210 which is the hallmark of CML. A coexistence is common for p210 and p190 and I believe the treatment and outcomes are the

by cmljax (Jul 27)

My oncologists orders the p190 PCR every time I have the p210 test done. I think it's overkill to do it every time, but I have to pick my battles and this is not one I care to wage. My

by Silas Boccia (Jul 26)

Hi people!
On March,15, after fews weeks feeling fever and nocturnal sweating, it was revealed a white blood count of 239 and hb 8,7. I started taken hydrea until March, 29 when the first
Category: Blood tests

Replies: 3

Last updated: 28 July 2018
Nimbus2 on 26 July 2018

Category: About CML

Replies: 10

Last updated: 28 July 2018

How long does CML linger before showing itself?
by DawnD (Jul 28)

This is so interesting. I was just diagnosed and I have a pain in the neck shoulder area as well. Doctor says it’s not related but maybe in some way it is, now that I hear your story. Thx, Dawn

by cmljax (Jul 27)

I was diagnosed in Sept 2016. I had recently returned home to FL from a 3 month trip through Eastern Canada and NE US. I noticed a bit of fatigue towards the end of walking 18 holes of

by davewell (Jul 27)

It really depends on the individual case but it definitely can linger for years.
I was diagnosed on April 2016, and symptoms were night sweats (which I had not noticed), loss of weight, and a

by Nimbus2 (Jul 27)

Thank you, David.
As as a newcomer, these postings are all very helpful to me.
Whatever the maturation period is prior to diagnosis, it appears that most CML appearances are very treatable. It may
Category: About CML

Replies: 10

Last updated: 28 July 2018
Nimbus2 on 21 July 2018

Category: Uncategorised

Replies: 3

Last updated: 24 July 2018

Query about CML presentations in Birmingham
by Nimbus2 (Jul 24)

They are indeed Saturday morning meetings, and I will strive to attend since I am close to Birmingham. Thank you for pointing me in the right direction.

by Nimbus2 (Jul 21)

Thank you, David, I think that you might have the correct link for me there. I will photograph the poster when I visit the haematology centre again next week.

by David Fitz (Jul 21)

I don’t think this is the same thing, as it’s not evenings but it might be of help to you?
https://www.leukaemiacare.org.uk/support-and-information/support-for-you...
David.

by Nimbus2 (Jul 21)

When I attended my diagnosis consultation yesterday, I was rather intense and focused but I did notice a notice on the wall concerning evening presentations in Birmingham. Does anyone know anything
Category: Uncategorised

Replies: 3

Last updated: 24 July 2018
Poppert on 21 May 2018

Category: Blood tests

Replies: 14

Last updated: 23 July 2018

Test result / stick with Imatinib?
by Poppert (Jul 23)

I had my 6 month appointment with the doctor today. I’m writing here what was said in case anyone finds it interesting in the future.
Amongst other things she said it was good that my blood values

by Poppert (Jul 9)

Blood values are back to normal (more or less) after a week’s Imatinib break. Hb 134, Lpk 3.9, thrombocytes 124 (best ever) and neutrophils 1.5. So back on Imatinib now.
Strange dip last week. Doc

by AlastairC (Jul 4)

Thanks David, that is news to me. It will be interesting to see if Poppert's levels have improved, but we won't know if it is the week off imatinib or an impact of the viral infection.

by David Fitz (Jul 3)

Alastair,
Transient, post-viral neutropenia is pretty common.
Here's a decent paper which discusses some of this. It doesn't go into great detail, but does state that viral load can cause a
Category: Blood tests

Replies: 14

Last updated: 23 July 2018
Lucas on 16 July 2018

Category: About CML

Replies: 5

Last updated: 23 July 2018

4 and a half years. Life goes on.
by Poppert (Jul 23)

Big like on that Lucas! Thanks for spreading positive news. :-)

by sandy craine (Jul 17)

Hi Lucas,
Great news, your posts are always uplifting... no matter how rare ... and good to hear your Pancreas is behaving.
Sandy

by Romo (Jul 17)

“Life goes on”. Don’t it ever.
I use to wake up to a new day. Every day.
Now I wake up to the same day. Every day and I have to make it new.
I have become better at reinventing my days.
I

by LouiseS (Jul 16)

Yes thank you so much Lucas. Very encouraging to hear your update and very happy that life is good for you now !
best, Louise
Category: About CML

Replies: 5

Last updated: 23 July 2018
Dean on 22 July 2018

Category: Blood tests

Replies: 2

Last updated: 23 July 2018

Infection after cut
by kat73 (Jul 23)

Dean - I had a somewhat similar reaction to a serious, infected dog bite. I had some symptoms of infection, but curiously not others, like the pus you mentioned. In the hospital (11 days

by Romo (Jul 23)

It’s pretty clear that you got bit by a “Red Biting Spanish water spider”.
It might be some mysterious never before known bealeszbob.
Our maybe you should give it some time. It might be

by Dean (Jul 22)

I have been taking imatinib 400g since my diagnosis end jan 2018. I just went to spain on holiday. I went swimming and got a very small cut on my knee. I used disinfectant on the cut when it did not
Category: Blood tests

Replies: 2

Last updated: 23 July 2018
Carolinemb on 21 March 2018

Category: Food & fitness

Replies: 8

Last updated: 22 July 2018

Imatinib & Fruit interaction
by David Fitz (Jul 22)

Indeed, don’t eat a whole one. But at the same time, don’t worry if there’s a little bit in your fruit salad.
David.

by Nimbus2 (Jul 22)

I was expressly told last Friday not to eat Star Fruit.

by David Fitz (Apr 10)

This is a highly cited paper on P450 methods of action. Warning: it’s not light reading.
https://www.sciencedirect.com/science/article/pii/S0163725813000065

by sandy craine (Apr 10)

Eva, you can find lots of resources out there on the subject of drug and food interaction with TKIs, but this drug interaction is well worth repeating.
Contrasting effects of diclofenac (
Category: Food & fitness

Replies: 8

Last updated: 22 July 2018
David83 on 20 July 2018

Category: Uncategorised

Replies: 6

Last updated: 22 July 2018

New to here (sadly)
by Romo (Jul 22)

Gitel,
If you are alive you are important.
Stop saying that you are old.
You are wise and we like you.
We are a family you are a member.
Take care, we love you.
Romo

by Romo (Jul 22)

My main interest in this blog is the Stem-Cell Essay.
Understanding the life of the Lukemic stem-cell is understanding
why the CML is chronic, and not cured with TKI’s.
...and where the cure

by Gitel (Jul 21)

Thanks for posting blog url. I had forgotten about it. I had checked it out 6 months ago when newly diagnosed. Rereading it is vey helpful. Gitel who is slower than a turtle, and an old lady.

by David83 (Jul 21)

Thanks for the info Romo, that’s much appreciated.
Nimbus, I’m sorry to hear about your diagnosis as well. I think it’s just as bad at any age and it’s great to find a group of people all sticking
Category: Uncategorised

Replies: 6

Last updated: 22 July 2018
alexmcpee on 17 July 2018

Category: Uncategorised

Replies: 1

Last updated: 21 July 2018

Telomeres - Meditation
by LouiseS (Jul 21)

Hi Alex
i hope the meditation and mindfulness are helping you. My husband was diagnosed last Sept. he is doing really well. A few days of fatigue here and there , lower white blood cell counts than

by alexmcpee (Jul 17)

Hi guys,
Mentally I've been struggling somewhat of late which is only natural considering I was only diagnosed in March this year. Anyway coincidentally a long story short I started meditation for a
Category: Uncategorised

Replies: 1

Last updated: 21 July 2018
VioS on 3 June 2018

Category: Uncategorised

Replies: 10

Last updated: 21 July 2018

problems after switching from imatinimb to nilotinib
by David Fitz (Jul 21)

I can’t say about creatine, but my doctor was totally fine with me taking whey protein shakes after the gym.
David.

by VioS (Jul 20)

Gitel, I have oat in sud europe, butt its not irish, i will try.
David, senna sounds finne for my.
Lately i do a lot of sport in the morning (after first tasigna dose), like runnig and weight

by Gitel (Jul 19)

Irish oatmeal and other high fiber foods work wonderfully. Be sure the oatmeal is long cooking. I make a quart at a time, refrigerate it and reheat each morning. Love it and it works. I am in the US

by David Fitz (Jul 18)

That is an excellent result. Congratulations!
Don’t suffer with constipation, it’s miserable. Use bisocodyl if you really need, or something more natural like senna. If it really is mild, try prunes
Category: Uncategorised

Replies: 10

Last updated: 21 July 2018
Nimbus2 on 17 July 2018

Category: Uncategorised

Replies: 7

Last updated: 20 July 2018

I think I am heading your way )-:
by Nimbus2 (Jul 20)

Hello again, Louise. Yes, my impression is that CML "is the one to have". The story certainly helps family members to gasp with relief. I start on Imatinib tomorrow morning. I was told

by LouiseS (Jul 20)

Sorry to hear Nimbus2, but if you are going to have leukemia , CML is the one you want to have, as I am sure your doctor told you.
what medication will you be taking ?
Best, Louise

by Nimbus2 (Jul 20)

I have just returned from seeing the consultant. Self-diagnosis (through many hours of Googling) is confirmed as CML. Sokal score is 0.75. Thank goodness, I have a diagnosis. The wait was driving me

by Nimbus2 (Jul 17)

Thank you, Louise. I very much like your idea of requesting copies of the result data.
I have during the past couple of weeks got most of the emotions out of my system (mainly in informing
Category: Uncategorised

Replies: 7

Last updated: 20 July 2018
SusanL on 19 July 2018

Category: Uncategorised

Replies: 1

Last updated: 19 July 2018

ON gleevec ...H2 antihistamine for GERD vs Proton Pump Inhibitor?
by David Fitz (Jul 19)

Hi Susan, all TKIs other than imatinib need an acidic stomach to be broken down properly. Imatinib is the only one that doesn’t.
PPIs and H2 agonists work differently, but achieve the same result

by SusanL (Jul 19)

Hello all,
I am wanting to know if it is okay to take an H2 antihistamine instead of a PPI because when I did the PPI my Creatinine shot up. My kidney clearance ratio also went down.
Please
Category: Uncategorised

Replies: 1

Last updated: 19 July 2018
vonnie on 16 July 2018

Category: Uncategorised

Replies: 4

Last updated: 20 July 2018

tiredness
by Romo (Jul 18)

You need more thrills in your life.
Do things more dangerous then cancer.
Eating raw shell fish with hot sauce for instance.
Romo...having fun.

by David Fitz (Jul 18)

Hi Vonnie,
Exercise really does help. But not more than you can handle. That’s the worst.
For me once a week weights and once a week yoga is great. But someone else might find a twice a

by vonnie (Jul 18)

Thanks to you Alex for supplying this thread which shows there are others with the same symptoms so i just need to do some more walking
thanks again
vonnie

by alexmcpee (Jul 17)

Hi Vonnie,
There is a long thread here on the subject that may help you https://www.cmlsupport.org.uk/thread/9243/fatigue
All the best with your journey
Alex
Category: Uncategorised

Replies: 4

Last updated: 20 July 2018
robert mcadie on 18 July 2018

Category: Organising your life

Replies: 3

Last updated: 18 July 2018

Help
by robert mcadie (Jul 18)

Thanks
We did wonder about withdrawal and will defo try the magnesium

thanks again

Maria

by LouiseS (Jul 18)

Maria I agree with Chrissie that the bone pain is because of drug withdrawal. I have read of others having same issue. I can’t remember unfortunately what you can take to ease the pain ( magnesium

by chrissie (Jul 18)

Some patients suffer withdrawal when stopping meds. It could be this.
best
Chrissie

by robert mcadie (Jul 18)

Hi all
My husband has been drug free since 21/4/18 after being on most TKIs since Nov 2003. His bcr-abl hasn’t changed since stopping meds and the rest of his bloods are looking good however
Category: Organising your life

Replies: 3

Last updated: 18 July 2018
scuba on 15 July 2018

Category: Uncategorised

Replies: 15

Last updated: 18 July 2018

Vitamin D
by Bronson_CLE (Jul 18)

Thanks Scuba!

by scuba (Jul 17)

... without knowing your blood levels and given your history - you are quite safe starting at:
1. vitamin D3 - 5,000 IU's per day taken with fat (cheese, meat, butter, eggs, etc.) morning/noon.
2.

by Bronson_CLE (Jul 17)

This thread got me to check my test results and the last Vitamin D 25 Hydroxy test was back in 2013 with a result of 12.3 ng/mL; before that 2010 was 17.7.
I'm wondering why I didn't question this.

by scuba (Jul 17)

"I asked if there was anything for low white blood counts, but there isn’t. However he did mention a very expensive ( unless insurance covers it) treatment called Neupogen. It’s a series
Category: Uncategorised

Replies: 15

Last updated: 18 July 2018
Ellie Regina Grey on 9 June 2017

Category: Uncategorised

Replies: 7

Last updated: 17 July 2018

PCR - 3month result
by sandy craine (Jul 17)

Dear Ellie,
well done and thank you for updating us here on your progress. It is so important for us all to share our experiences with other diagnosed with CML- The main reason this site exists.
You

by davewell (Jul 17)

These are the best kind of messages!
It is so good to hear back from people that are doing well, I believe it gives us all a (needed) boost of hope and good feelings!
Congrats for the marathon! I am

by Ellie Regina Grey (Jul 14)

Hello Davewell & Sandy,
I hope both of you are doing well with your respective CML journey.
My own have been very good indeed since I penned my 1st post back in 2017 (knock on hard wood for it

by Ellie Regina Grey (Jun 12)

Thanks Sandy, it is always very reassuring to hear facts and figures from those who are going through and living with the same condition as i am.
On that note, I hope to have a great number to
Category: Uncategorised

Replies: 7

Last updated: 17 July 2018
John J on 27 June 2018

Category: Uncategorised

Replies: 4

Last updated: 16 July 2018

New CML Diagnosed
by John J (Jul 16)

Thanks everyone for the support, your words are appreciated. JJ

by LouiseS (Jun 27)

Welcome to the site John. My husband is also on Sprycel. The first few nights he didn’t sleep well and felt a bit panicky but I think that was a combination of his body adjusting and anxiety caused

by cmljax (Jun 27)

Keep us informed John. You will learn a lot from your fellow CML'ers on this site that you may or may not learn from your doctors. The shortness of breath on Sprycel is not unusual for

by David Fitz (Jun 27)

Hi John, and welcome - it’s all going to be so new to you and it takes your body and mind a while to adjust. Best of look with those blood tests, and let us know how you get on.
David
Category: Uncategorised

Replies: 4

Last updated: 16 July 2018
LouiseS on 10 July 2018

Category: Uncategorised

Replies: 13

Last updated: 16 July 2018

Bcr-ABL risen on lower dose
by AlastairC (Jul 16)

Hi Louise,
I don't think there's a simple answer to how low neutrophils can go before something needs to change. I got to around 0.7 I think when my consultant got really worried, but I didn't have

by LouiseS (Jul 16)

Since Paul is going to be increasing dosage at the end of month , I wanted to get advice on how often we should insist on blood tests to make sure his neutrophils ( already low at a1.1l , so very

by AlastairC (Jul 12)

I would add one more constraint we need to consider about doctors - one of their priorities is not do anything which may lead them to being sued. Following medical orthodoxy - or what they

by RC Kirk (Jul 12)

As an example of misinformation, I received a message from my oncologist's office telling me I shouldn't be cutting my Sprycel tablets because they have an enteric coating and that cutting the
Category: Uncategorised

Replies: 13

Last updated: 16 July 2018