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The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

£3M Award for Pioneering Scottish Trial for Leukaemia (CML)

BCR-ABL1 levels increase in peripheral blood but not in granulocytes after physical exercise

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Tanya Cuffe on 6 February 2019

Category: Uncategorised

Replies: 28

Last updated: 16 February 2019

Am so nervous,changing to Sprycel from Gleevec...
by Tanya Cuffe (Feb 16)

Magnesium citrate is good form to take.Had enough of feeling unwell quite frankly...hot cold anxious depressed hair loss aches all over early menopause etc.The good things are that there is hope for

by Felix (Feb 16)

Hi, saw my doc,had lots of blood tests including HIV and all the Hepatitis ones goodness knows why and an ECG to see how I am doing before starting on new meds .She wants to start me on 100 mg and I

by Tanya Cuffe (Feb 16)

Hey Denise,started on Sprycel 50 mg.Have taken 4.Dont see doctor til end March so hopefully results will be good!Have been feeling bit weird in them,itchy scalp emotional and bit depressed but

by Felix (Feb 16)

Hiya Tanya ,Just checking up on you to see how you are feeling on your new meds ,hope you are feeling ok.Havent started on mine yet ,Denise.
Category: Uncategorised

Replies: 28

Last updated: 16 February 2019
fiona vaughan on 3 January 2019

Category: Uncategorised

Replies: 4

Last updated: 16 February 2019

CML meeting at Hammersmith Hospital 16 February
by fiona vaughan (Feb 16)

The next date at Hammersmith for a meet up of patients and caregivers with CML is 18 May and 7 sept. Today I finally got to meet other people with CML ....what a relief to know I’m not

by David Fitz (Feb 9)

We don't have a date yet for the 2019 patient day. It's usually every year, and details will be posted on this site as soon as they are available. As you can imagine, it takes quite a lot of

by fiona vaughan (Feb 9)

I’m not sure when the meetings are but I know Hammersmith have them 3 x per year. I have come over from The Middle East especially to go to the one next weekend. I also came over to get a

by M.ashcroft (Jan 14)

Hi Fiona

Do you know if there will be another meet up later in 2019 as I would be traveling from Warrington and I can't make it for the 16.2.19 meeting although I would like to attend one of
Category: Uncategorised

Replies: 4

Last updated: 16 February 2019
Sandra Djureholt on 7 January 2019

Category: Side effects

Replies: 7

Last updated: 16 February 2019

Splenomegaly
by David Fitz (Feb 16)

Hi Kirk,
Yes that's broken at the moment. We are working to fix / replace.
David

by RC Kirk (Feb 16)

I don't get notifications either. Maybe that feature isn't working?
Good to hear that your spleen isn't bothering you any longer.

by Sandra Djureholt (Feb 16)

Hi! Thank you everyone for your replies! I'm so sorry I haven't replied for so long. I did check the box for notifications so when I didn't get any I figured no one had answered my

by Dustylloyd (Jan 9)

Hi Sandra, probably showing my ignorance but up to being diagnosed in January 2015 I and the majority of people I know didn’t even know where the spleen was, all I remember was a constant ache
Category: Side effects

Replies: 7

Last updated: 16 February 2019
bendicco on 16 February 2019

Category: Drug-food interactions

Replies: 3

Last updated: 16 February 2019

MUSHROOMS AND CML
by bendicco (Feb 16)

See what I mean? And yes according to them ginger was a really big no-no!

by AlastairC (Feb 16)

New one on me. I was on Glivec and then generic imatinib for over 11 years. Must have consumed kilos of garlic (&ginger if they include that) and 10s of kilos of mushrooms over that period.

by Tbrand (Feb 16)

That’s not good, it would include girls. I’m on Imatinib and associate with all the G’s and have never had issues.

by bendicco (Feb 16)

Conflicting information , I was told by the oncology pharmacist at Sloan to stay away from mushrooms! I was DX with CML almost 3 years ago and take Gleevec. I was also told to stay away from
Category: Drug-food interactions

Replies: 3

Last updated: 16 February 2019
Dshyam Prasad on 16 February 2019

Category: Side effects

Replies: 1

Last updated: 16 February 2019

please go through my report and help me in understanding it
by RC Kirk (Feb 16)

Hello Shyam,
There are several other tyrosine kinase inhibiting (TKI) medications that may work better for you than imatinib. Ask your doctor which one he thinks would be best for you.

by Dshyam Prasad (Feb 16)

hello i am shyam i am a patient of cml since 2011 .
i am diagonosed with imatinib 300mg daily since 7 years .
in the year 2018 i started to suffer with drastic muscle pain in my legs and hands with
Category: Side effects

Replies: 1

Last updated: 16 February 2019
sandy craine on 14 January 2018

Category: Other conditions

Replies: 16

Last updated: 16 February 2019

Alternative/Complimentary Therapy
by Diane CW (Feb 16)

Sorry if I am being a bit daft but do you take Curcumin in tablet form or a powder? I have been searching the internet and can’t find anything that comes in a dosage of grams. Can anyone help

by Phuong Phuong (Feb 16)

Hi Scuba
do you have any information about curcumin with imatinib? is it ok to take curcumin when you are on imatinib?
thank you

by scuba (Feb 2)

Hi Louise - I must have missed this. Let me know if you can't find it and we'll find a way to get it to you (David?) via email.

by scuba (Feb 2)

Congratulations on your quick response on sprycel. When your PCR falls below 0.01% ask your doctor about reducing dose so you minimize the chance of pleural effusions or other side effects.
I take
Category: Other conditions

Replies: 16

Last updated: 16 February 2019
gillianb on 15 February 2019

Category: Uncategorised

Replies: 2

Last updated: 16 February 2019

Young Adults with CML
by gillianb (Feb 16)

Thank you David! Yeah I'm just going to forge ahead and try to take extra good care of my body and mind. I sure appreciate the online community we have here, it has been helpful.

by David Fitz (Feb 15)

Hi Gillian,
Two months is no time at all. When you start taking the medication for CML, it starts to break down all sorts of things in your body - some doctors give medication like allopurinol to

by gillianb (Feb 15)

Hello,
I am 22 years old and was diagnosed 2 months ago. I started on Dasatanib 100mg daily. They will test my BCR-ABL again in April, as well as another bone marrow biopsy to see how things are
Category: Uncategorised

Replies: 2

Last updated: 16 February 2019
bendicco on 16 February 2019

Category: Drug-food interactions

Replies: 0

Last updated: 16 February 2019

FATIGUE and supplements
by bendicco (Feb 16)

Wondering if anyone has had success with any supplements to combat the fatigue from Gleevec? Anyone know anything about BEET POWDER for this?
Category: Drug-food interactions

Replies: 0

Last updated: 16 February 2019
Tanya Cuffe on 13 February 2019

Category: Uncategorised

Replies: 10

Last updated: 16 February 2019

Antidepressants with CML meds?
by Tanya Cuffe (Feb 16)

New area,new doctor need be found...taking biotin for hair loss as believe it’s ok...Thank you,friend,for saying things will get better!Theres always hope😊

by kat73 (Feb 15)

Your primary care doctor can order the tests, and I don't see any reason why not to - you want to be in the best nutritionally healthy condition you can be in order to help the Sprycel help you

by Tanya Cuffe (Feb 15)

dont know where you get vitamin levels tested? Maca was for menopausal symptoms,panadeine forte was an excuse to take something...will stop now plus the rest.feel clarity regarding what I should do

by kat73 (Feb 15)

I second everything Dawn so helpfully added. Have you had your vitamin D, B, and Magnesium levels tested and found you were deficient? If not, they are a waste of money and stomach acid
Category: Uncategorised

Replies: 10

Last updated: 16 February 2019
bendicco on 15 February 2019

Category: Uncategorised

Replies: 0

Last updated: 15 February 2019

Fatigue on Gleevec
by bendicco (Feb 15)

Anyone take beet powder to help with fatigue?
Category: Uncategorised

Replies: 0

Last updated: 15 February 2019
Ontasigna on 15 February 2019

Category: Treating CML

Replies: 0

Last updated: 15 February 2019

Turmeric and Nilotnib
by Ontasigna (Feb 15)

Hi there,
I am planning to start with Turmeric & black Pepper once a day. I have read posts of scuba about it.
My question - is it safe to take turmeric/black pepper with Nilotnib.
Thank you
Category: Treating CML

Replies: 0

Last updated: 15 February 2019
MJP on 9 February 2019

Category: Blood tests

Replies: 6

Last updated: 15 February 2019

0.029% at 9 months
by LabNoir (Feb 15)

Thanks, I did read a bunch of paper about increasing PCR and Some paper suggest a variance of 0.5 log, others 2 fold increase. But I guess none of these apply at around MR4 as it reach the detection

by RC Kirk (Feb 12)

Good morning Mark,
As you haven't had any side effects, I can understand why your doc doesn't want you at a lower dose. The research I've read indicates that drug breaks due to

by AlastairC (Feb 12)

The difference between 0.026% and 0.017% is well within the accuracy limits of the test process - to all intents and purposes they are the same. You are clearly a hare (getting to MMR in 6 months),

by LabNoir (Feb 12)

I also just got my 9 month PCR and it is similar to yours at 0.026% but I ain’t happy about it at all since my 6 month number is 0.017%! It is funny how these simple sequences of numbers can
Category: Blood tests

Replies: 6

Last updated: 15 February 2019
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

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
David83 on 30 January 2019

Category: Uncategorised

Replies: 3

Last updated: 12 February 2019

An Unconventional Nilotinib Reduction
by JohnFromChicago (Feb 12)

Im 31 and I was actually on Nilotinib for a very breif time roughly 2 weeks. The original oncologist actually mistakenly prescribed me only 300mg once daily. My blood levels did tank to some degree

by David83 (Jan 31)

I wasn’t aware about the younger patient info. I was diagnosed at 34 and now I’m 35 so fairly young for CML, possibly that has something to do with it? My doctor was fairly relaxed about

by Poppert (Jan 30)

I’ve been struggling with low blood values too. It has taken about a year to get to somewhat normal values.
I’m on Imatinib 400mg, not Tasigna. I have had two breaks; one for 2 weeks and

by David83 (Jan 30)

In the last couple of days I’ve just started taking a reduced dose of Nilotinib, 150mg twice a day. The unusual thing about this is that I’m only just over seven months from diagnosis
Category: Uncategorised

Replies: 3

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