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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Diane CW on 30 January 2019

Category: Uncategorised

Replies: 24

Last updated: 14 February 2019

New Here, Looking for help
by Diane CW (Feb 14)

Hi Scuba
yes sorry should have made that clear, definitely K2 that I am taking.

by scuba (Feb 14)

Just verifying it is vitamin K2 you are taking - .. correct?
K2 is also known as menanquinone or MK-7. Make sure it is K2. (vitamin K can refer to K1 which works differently)

by Diane CW (Feb 14)

Thanks Scuba. I am starting with the daily D3 and K today as you recommended and will ask for my levels to be checked in six weeks. Just hoping and keeping my fingers crossed for a positive outcome

by scuba (Feb 13)

I'm impressed - your doctor prescribed vitamin D3 instead of D2. That's good.
50,000 one day a week - not so good. When I was prescribed 50,000 once per week, I just started at 10,000 IU
Category: Uncategorised

Replies: 24

Last updated: 14 February 2019
POPPY on 19 October 2018

Category: Treating CML

Replies: 10

Last updated: 14 February 2019

To proceed with Allo SCT or no?
by Job Guerra (Feb 14)

I would not be overly concerned about 12% at this point. I was at 23% after 3 months (which is not good), 1.8% at 6 months, and still going down. Not everybody responds the same. I

by POPPY (Feb 14)

Hi All! His first PCR test showed 12% (he was on 400mg twice daily). We were told that 10%-20% is the warning zone and anything that falls below 10% is in the safe zone. Now his dose has been

by RC Kirk (Nov 28)

Thanks for the update with the good news!

by POPPY (Nov 28)

Hi Kirk,
After 2 months (diagnosed on Sept) , his bloodwork is now normal. His basophils reduced from 22% to 2% then increased to 4% and then decreased to 0.7%. Finally, good news after several
Category: Treating CML

Replies: 10

Last updated: 14 February 2019
Job Guerra on 13 February 2019

Category: Drug-drug interactions

Replies: 2

Last updated: 13 February 2019

Splitting/Cutting Pills In Half?
by Job Guerra (Feb 13)

Thank you RC this is very helpful.

by RC Kirk (Feb 13)

Definitely use a pill splitter.
https://en.wikipedia.org/wiki/Pill_splitting
The tablets have a coating to prevent drug exposure when handling. Splitting Sprycel creates a little bit of dust,

by Job Guerra (Feb 13)

I was wondering if anybody, or at least anybody who will be honest that they are doing it will care to share their experience in cutting the pill in half? I am curious because I am between
Category: Drug-drug interactions

Replies: 2

Last updated: 13 February 2019
Maxmillan Maxmillan on 11 February 2019

Category: Treating CML

Replies: 5

Last updated: 13 February 2019

Swollen leg, pain, weakness and nausea.
by kat73 (Feb 13)

Has he even Googled hydroxyurea? He needs to see a doctor. Period. Glad his Gleevec dosage has been put right, but the hydroxyurea is just nuts. Also, a guy who falls, faints

by Maxmillan Maxmillan (Feb 13)

My friend has started one day with his normal dosage of 400mg of Gleevic (reduced from 800mg) the lightening pain in his legs has significantly subsided. He did take 500mg of hydroxyurea

by Evelinka89 (Feb 12)

I cannot see any connection between oedema and possible rise of WBC. Yes, there is a little physiological rise after trauma but not so high to cause this. It has to be really high to develop

by AlastairC (Feb 12)

I am also not a medical professional but feel that this does not stack up. I can't see the trauma of the fall leading to a WBC that made hydroxurea a good idea, and I'm not at all sure what
Category: Treating CML

Replies: 5

Last updated: 13 February 2019
MartinZA on 21 December 2018

Category: Treating CML

Replies: 3

Last updated: 12 February 2019

Fasting and imatinib
by Ray Sell (Feb 12)

Martin I'm wondering how your fast went after Christmas. I to am on Imatinib and would like to do the fast. Thank You Ray

by MartinZA (Dec 24)

Hi David
Thank you so much, as always, for your quick and helpful reply. I'm going to give it a try over this festive season and start fasting after Christmas. Will let everyone know

by David Fitz (Dec 21)

Hi Martin.
The advice to take imatinib with food is down to the fact that a fair amount of people feel nauseous if it's taken on an empty stomach. I know I certainly did feel a bit squiffy

by MartinZA (Dec 21)

Hi everyone
I have read with a great deal of interest the exceptionally interesting posts by scuba regarding fasting on dasatinib and the possibility of hitting the quiescent CML cells hard.
Category: Treating CML

Replies: 3

Last updated: 12 February 2019
MartinZA on 11 February 2019

Category: Treating CML

Replies: 6

Last updated: 12 February 2019

Bobbing about in MMR
by fiona vaughan (Feb 12)

I’m still waiting to feel grateful but I am not there yet. I was only diagnosed 3 months ago and at the time it didn’t really sink in and I just took the meds as I was told and carried

by kat73 (Feb 11)

Came in late here and never saw the deleted post. Am guessing, but I suspect there was some understandable venting of despair and anger. Whenever you hear the word "leukemia"

by MartinZA (Feb 11)

That is such a great response. Thank you so much for making me feel better and bringing some support to this support forum! Don't we all have bad days?!

by Damian Gabilondo (Feb 11)

Dear, I see that he is a man of numbers, me too, but I realized that not everything is a matter of numbers, statistics, percentages, answers, surveys and studies. The cure is in ourselves and how we
Category: Treating CML

Replies: 6

Last updated: 12 February 2019
Nimbus2 on 9 December 2018

Category: Uncategorised

Replies: 11

Last updated: 11 February 2019

Generic Imatinib Compared With Gleevec in CP-CML: Patient Outcomes Across 3 Countries
by Nimbus2 (Feb 11)

I asked a senior consultant at a public meeting whether the differences in side effects between Gleevec and the various generic equivalents is real or perceived.
He replied that the basic imatinib

by johnh (Feb 10)

I have been taking 400mg Imatinib daily since 2005 and have been using generic versions since they became available. More recently I have been given a supply of Cipla 400mg capsules which look

by Richard42 (Jan 11)

I agree with Sandy - I am sceptical of the research presented not least because it doesn't look as if it is comparing apples with apples. And the newspaper article cited does indeed

by Nimbus2 (Jan 3)

Thank you, Alastair.
I do agree with your statement. The problem is that there is a growing widespread perception among patients that the generic versions are not equivalent. The following article (
Category: Uncategorised

Replies: 11

Last updated: 11 February 2019
Ros77q on 11 February 2019

Category: Uncategorised

Replies: 3

Last updated: 11 February 2019

Applying for australia
by johnw1001 (Feb 11)

I am sorry but am not able to advise you.
Some years ago I was involved with student recruitment into UK and at that time it was relatively straightforward for a dependent of a student who was

by Ros77q (Feb 11)

Thanks for the reply. My wife is studying there and want to be with her. Its student dependent visa. Will i be able to be with my wife and support her?

by johnw1001 (Feb 11)

Hi there,
I will not offer you any technical or other advice as I am not aware of which country you currently reside, but assuming that you are going in on a tourist visa there is no reason why your

by Ros77q (Feb 11)

Hi all my wife is in australia. I am overseas and want to be with her. I have cml and and taking dasatinib. My medication is entirely free. I do not pay anything. Will i get visa or will be refuse
Category: Uncategorised

Replies: 3

Last updated: 11 February 2019
Phuong Phuong on 6 February 2019

Category: Side effects

Replies: 10

Last updated: 9 February 2019

Indigestible, diarrhea - imatinib side effects
by Phuong Phuong (Feb 9)

Hi TJD
your story gives us inspiration and hope. Thank you so much!

by TJD (Feb 8)

Hi ,I actually did the clinical trial for Imatinib in 2001 and also.suffered with diarrhea,along with muscle cramps it was one of the main side effects.I.agree with others about Imodium ,luckily I

by Phuong Phuong (Feb 7)

Hi Ray, my boyfriend is on 400.
So good to hear you are doing fine now. We will try some of your and other member's advices. I hope they will work for my boyfriend.
Ray and all, I

by Phuong Phuong (Feb 7)

Hi Kat, Thank you so much for sharing your thought and experience.
Category: Side effects

Replies: 10

Last updated: 9 February 2019
Toni on 31 January 2019

Category: Uncategorised

Replies: 7

Last updated: 8 February 2019

Leg pains
by Vikram (Feb 8)

Same problem.....
muscle cramps, lang pain...

Diagnosis (end of 2007)
400 grm Imtinib.....
But
After 8-9 months pain gone automatically......
Last one year one time muscle cramps....... (

by TJD (Feb 8)

Hi Toni
I actually did the clinical trials for Imatinib in 2001 o,one of the main side effects they found in the trial was the drug could cause muscle cramps,I now take Quininne Sulfate 300 mg ,

by Toni (Feb 7)

Thank you Ray, I hope you are now getting some relief?
My pains are worse in the evening, usually walking to the station on my home from work.

by johnw1001 (Feb 6)

Hi there,
For some it seems that TKIs will give side effects involving muscles and joints especially imatinib.I am a veteran dx 13 years ago and have just experienced my third major flair up of
Category: Uncategorised

Replies: 7

Last updated: 8 February 2019
Sonia0609 on 7 February 2019

Category: Children & young people

Replies: 8

Last updated: 8 February 2019

Plateaued with Imatinib
by Sonia0609 (Feb 8)

Thank you for your reply. All the responses have calmed my nerves. It's scary, especially the unknown. I will mention to my oncologist, however, if Nilotunib is the best option. Thank you for taking

by kat73 (Feb 8)

Sonia, this has happened to a lot of us. There are 5 TKI's, so the likelihood that one or more will work brilliantly for you is high. Tasigna is a reasonable next try, but be mindful

by Sonia0609 (Feb 8)

Hi John,
Thank you so much for your reply. I'm forever grateful for this forum!

That being said, the oncologist was hoping for quicker results. She felt that I should have been at a 3.5

by Sonia0609 (Feb 8)

Thank you so much for your reply. It's always nice to hear from someone who has gone through the same experience. I'm hoping my mutation results come back negative; however, what if it doesn't?
Category: Children & young people

Replies: 8

Last updated: 8 February 2019
Felix on 6 February 2019

Category: About CML

Replies: 5

Last updated: 7 February 2019

TRAVEL INSURANCE IN UK
by Toni (Feb 7)

Hi,
i used a company called All Clear and I thought they were excellent. I also managed to get reasonable quotes from age uk (I’m not old by any means) and stay sure. They all cover medical

by Felix (Feb 7)

Thank you very much ,will have a look at them,Denise.

by johnw1001 (Feb 6)

Suggest you try World First as they will cover all conditions.You will have to undergo medical screening, by phone usually, and one of the questions might be if you are undergoing chemotherapy

by Felix (Feb 6)

Hi Dusty ,thank you so much for taking the time to reply to me ,I will have a look at them .Cheers ,Keep well ,Denise.
Category: About CML

Replies: 5

Last updated: 7 February 2019
Ontasigna on 7 February 2019

Category: Treating CML

Replies: 6

Last updated: 7 February 2019

Help!! Unable to sleep due to anxiety
by Felix (Feb 7)

Hi,cut out caffeine and chocolate ,they keep me awake at night .Worth a try .

by Ontasigna (Feb 7)

Thanks so much Jax and Lukas. I am feeling positive now. Appreciate your support.
Jax- Is Ativan safe to take along with tasigna? Or Should be taken after couple of hrs?

by kali (Feb 7)

Great suggestions!
You can also tighten and relax each muscle group from head to toe. When finished focus on deep breathing and visualize the medicine attacking the cancer and as you breathe in

by scuba (Feb 7)

CML causing your anxiety?
I found that by taking 250 mg magnesium (as magnesium citrate or magnesium taurate) at bed time, it relaxed me and I sleep much better - back to normal. It also took care
Category: Treating CML

Replies: 6

Last updated: 7 February 2019
MartinZA on 4 February 2019

Category: Drug-food interactions

Replies: 3

Last updated: 7 February 2019

South-East Asian fruits and imatinib
by Lucas (Feb 7)

Great, martin! if you decide to come to fortaleza, send me a message! it's all fine here!

by MartinZA (Feb 4)

Hi Lucas
Great to hear from you again. I've just had a Brazilian friend here and have been thinking about planning my next trip to your country!
Thanks so much for this info - what a

by Lucas (Feb 4)

Hi, martin! hope you're fine! it's hard to talk about those exotic fruits, but i know that starfruit isn't an option, also dragonfruit is an CYP3A4 inhibitor, what may cause elevations

by MartinZA (Feb 4)

Hi everyone
Hope you're all doing well! This is just a quick question to find out if anyone knows about the interaction between imatinib and various exotic fruits native to Southeast Asia
Category: Drug-food interactions

Replies: 3

Last updated: 7 February 2019
Milagros Soriano on 5 February 2019

Category: Organising your life

Replies: 2

Last updated: 6 February 2019

Where to get free CML medicine?
by johnw1001 (Feb 6)

I think David is referring to the Novartis Oncology Patient Support and Financial Access Scheme which operates in certain countries where neither government nor insurance companies supplies

by David Fitz (Feb 5)

It very much depends where you live.
David.

by Milagros Soriano (Feb 5)

How to get free meds on CML ? The imatinib mesylate 400 mg. Is costly? Just diagnosed this Dec. 2018 and I am financially tight as i am the breadwinner and to add to the expenses, i just got out
Category: Organising your life

Replies: 2

Last updated: 6 February 2019
Ontasigna on 1 February 2019

Category: Treating CML

Replies: 4

Last updated: 6 February 2019

ECG - tasigna - dropped heart rate
by Ontasigna (Feb 6)

Thanks so much Eva.

by cmljax (Feb 3)

My QT and QTc both went up about the same as yours when I first started on 600 mg/day Tasigna in Oct 2016 - QTc went from 420 - 445 and is now 426 and I am not worried. This is not an

by Evelinka89 (Feb 2)

Hi,
tyrosinkinase inhibitors sometimes prolong QTc. Prolongation to 408 ms is harmless if you are otherwise ok, without any symptoms and could be a side effect of Tasigna. Usually normal

by Ontasigna (Feb 1)

Look for help. Kindly look into it.
Category: Treating CML

Replies: 4

Last updated: 6 February 2019
David Fitz on 31 January 2019

Category: Uncategorised

Replies: 2

Last updated: 4 February 2019

Falsified ICLUSIG / ponatinib traded globally
by r06ue1 (Feb 4)

Maybe they know something we don't know? ;)

by RC Kirk (Feb 1)

These counterfeiters deserve a really long time out in prison!!!
"If you are in possession of the above vaccines, please do not use." - Quoted from the WHO site. Funny, I've

by David Fitz (Jan 31)

Exceptionally important information below for CML patients taking Ponatinib / ICLUSIG.
https://www.who.int/medicines/publications/drugalerts/drug_alert-2-2019/en/
Confirmation that counterfeit drugs
Category: Uncategorised

Replies: 2

Last updated: 4 February 2019
Ros77q on 3 February 2019

Category: Uncategorised

Replies: 3

Last updated: 4 February 2019

Myelosuppression
by scuba (Feb 4)

Headaches can be a side effect of sprycel, but usually fades away over a few days. Mine only lasted a few days. Yours are lasting longer and may be due to something else.
What are your absolute (abs

by Ros77q (Feb 4)

Scuba, i can hear pounding heart. I can feel it in neck and head and have mild headache. Even if i climb 2 stairs my heartbeat rise and feel tired.

by scuba (Feb 3)

No, myelosuppression is not a sign of CML coming back. Achieving cytogenetic remission is excellent. You are doing well.
But you are on a high dose of dasatinib and in the beginning of treatment.

by Ros77q (Feb 3)

Hi there is myelosupression sign of disease coming back? I am on dasatinib and my blood vessel is pounding around my neck and head and cause mild headache. My blood count are going low. Or
Category: Uncategorised

Replies: 3

Last updated: 4 February 2019
robert langdrum on 3 February 2019

Category: Uncategorised

Replies: 1

Last updated: 4 February 2019

Sprycel (dasatinib) cost
by DawnD (Feb 4)

Hi, I received assistance from Bristol Myers Sprycel assist. Huge help for me!! Good luck sure hope it works for you.

by robert langdrum (Feb 3)

Hi. My son was diagnosed with CML when he was 10. He is 14 now. We have been most fortunate. He takes Sprycel 100mg with no side effects

Insurance complications now cause me to have to buy
Category: Uncategorised

Replies: 1

Last updated: 4 February 2019
David Fitz on 2 February 2019

Category: Uncategorised

Replies: 0

Last updated: 2 February 2019

Sandy Craine - forum absence due to family news
by David Fitz (Feb 2)

Our founding member, Sandy, has asked me to let all our members know why she has not been very active on the forum and is not likely to be for a little while.
Unfortunately Sandy's father
Category: Uncategorised

Replies: 0

Last updated: 2 February 2019