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Brenda21 on 30 July 2019

Category: Uncategorised

Replies: 2

Last updated: 5 August 2019

imatinib Sandoz Please help!
by David Fitz (Aug 5)

Hi there.
I had severe (grade 3/4) bone pain and muscle pain when on imatinib. It was a dull ache, with intermittent shooting pain.
After trying everything, with no improvement, the doctor and

by AlastairC (Jul 30)

Hi Brenda,
This link is the talk from last year's patient day on side effects. Sebastian Francis ( a consultant from Sheffield) talked a lot about the side effects of imatinib. Hope that helps.

by Brenda21 (Jul 30)

Hi,
looking for some help please my husband has been on roller coaster since diagnosis on 15july this year, he has been given imatinib sandoz to take one a day and has since the 18th July this
Category: Uncategorised

Replies: 2

Last updated: 5 August 2019
MarkP66 on 31 July 2019

Category: Uncategorised

Replies: 4

Last updated: 5 August 2019

Quick question on BCR-ABL numbers
by David Fitz (Aug 5)

Hi Mark,
39.8% is at the lower end of a PCR test at diagnosis. I was 321% for example - but it doesn’t really matter as for the purposes of testing and prognostic indicators we are all treated

by Nimbus2 (Aug 5)

I had bone marrow taken at diagnosis but the RNA was stored and no test performed. The blood test at diagnosis was Fish only, 92%. I was told that FISH trumps BCR-ABL until complete

by AlastairC (Jul 31)

Hi Mark
The most important thing you're looking for is to be on a downward trend for PCR results. The guidelines for optimum response listed above are pretty much the same both sides of the

by ColoradoGuy (Jul 31)

Hello - Sorry you had to join this forum but you will find a lot of good information. I use the following (pg. 30) because I am in US but European guidelines are available on this website as
Category: Uncategorised

Replies: 4

Last updated: 5 August 2019
OggabetF on 4 August 2019

Category: Uncategorised

Replies: 0

Last updated: 4 August 2019

International Chronic Myeloid Leukemia Foundation (iCMLf) - Climb for a Cure Mount Kilimanjaro 2019
by OggabetF (Aug 4)

Hello All,
The iCMLf is hosting a fundraiser for the iCMLf CURE Program called the Mount Kilimanjaro Climb for a Cure 2019.
iCMLf Directors Professors Tim Hughes, Jorge Cortes and Michael Mauro
Category: Uncategorised

Replies: 0

Last updated: 4 August 2019
JohnFromChicago on 2 March 2019

Category: Uncategorised

Replies: 8

Last updated: 1 August 2019

Facial Edema Sprycel
by kat73 (Aug 1)

Yes, John, do go for a reduced dosage of Sprycel. Almost all the thinking on Sprycel now is for 70 or 50 when you've gotten below MMR and have bad side effects. It can't hurt -

by JohnFromChicago (Aug 1)

Just wanted to give an update on this sensation eventually got way worse lasting all day and very intense, after MRI, spinal tap and seeing Dr. Kantarjian at MD Anderson this appears to be just a

by JohnFromChicago (Mar 6)

Thanks all for the replies I have an appointment with my PCP tomorrow hopefully get this figured out quickly :)

by bendicco (Mar 4)

You got it Kat, and that the Gleevec causes celluar fluid buildup has caused a 5 lb. weight gain that I cannot lose!! Oh well this is a small price to pay for staying alive!
Category: Uncategorised

Replies: 8

Last updated: 1 August 2019
Ontasigna on 28 July 2019

Category: Treating CML

Replies: 7

Last updated: 1 August 2019

Missed a dose
by Ontasigna (Aug 1)

Yes, I was dx last dec. It's been 7 months now.

My 6th month PCR is 0.0065.
My joint and muscle pains are still the same. Have to hit gym or get doc appointment to get some relief :-)

by AlastairC (Jul 29)

Hi, Have you been on Tasigna for 6 months or more - I see you have been using the site for 6 months.? If so, and you've not had this issue before, and it has not got better 3 days after your

by Ontasigna (Jul 29)

Yes, I am on Tasigna 400 mg BD. Does missing a dose have any effect on my PCR?
It's been like 3 days after my missed dose. I still have joint point.

by AlastairC (Jul 29)

Hi, if the joint pain goes within 1-2 days of taking your normal dose, it could well related to the missed dose. If it goes on after that I think it probably has another cause. The half life
Category: Treating CML

Replies: 7

Last updated: 1 August 2019
BrianUK on 21 July 2017

Category: Side effects

Replies: 3

Last updated: 1 August 2019

Nausea
by EURO (Aug 1)

Hi EVA,
Thank you for your tip , it works perfectly . I use 2-3 squares of dark chocolate every morning after imanitib 400 mg and no more nausea :)

by Richard42 (Aug 18)

Hi Brian
While not as bad as ulcers, I had significant acid reflux on imatinib (I was a bit prone to it before I started but it was much worse on imatinib). I think you may be right that the

by EvaH (Aug 17)

Oh thats interesting!
My cure for post imatanib nausea is 2 big squares of dark chocolate.

by BrianUK (Jul 21)

I have been taking Imatinib 400mg for a long time. After a few years I started to suffer from nausea shortly after taking the tablets. An endoscopy showed that i had stomach ulcers. This issue was
Category: Side effects

Replies: 3

Last updated: 1 August 2019
Beanosbeetle on 29 July 2019

Category: Side effects

Replies: 9

Last updated: 31 July 2019

Side effects imatinib
by Beanosbeetle (Jul 31)

Cheers Kenny my specialist nurse got in touch today I have been taking ibuprofen and magnesium tablets but she has told me to just take paracetamol or cocodomol but I have an appointment this Monday

by Kenny (Jul 31)

I'm in Scotland too, I was diagnosed in 2003 and was put on imatinib and went through the same side effects and others, I remember walking and finding it hard, but it did clear eventually, so

by Beanosbeetle (Jul 30)

Thanks Alastair its hard from being the big strong man of the house with a heavy manual job on the railway to being a broken man in so much pain since being on the tablets but hopefully they can

by AlastairC (Jul 30)

Hi, I think I've replied to your wife on this subject on a different thread. I have sent her the link to the talk on side effects from last year's patient day. In that talk Sebastian Francis
Category: Side effects

Replies: 9

Last updated: 31 July 2019
saifur360 on 17 March 2019

Category: Treating CML

Replies: 5

Last updated: 31 July 2019

chronic myeloid leukemia
by Shekhar (Jul 31)

Hi vikram,
This was the toughest for all time. We went to the doctor and rest he explained all about the CML. We knew each other, and she was well know about all this. Explaining to her family was

by Vikram (Jul 26)

Hi shekhar
How to explain your wife and her family before Married about cml, treatment and risk..

by David Fitz (Jul 25)

Alex,
You're right - the consensus is that it's fine to father a child on imatinib. There are several presentations and videos on this site by Jane Apperley which can be found using the

by Shekhar (Jul 25)

Hi, I had no problem in getting married. I have been taking Imatinib 400mg from 2004 and got married in 2013. We have a child of 4yrs. We are spending a normal life. As per my doctor, CML want be
Category: Treating CML

Replies: 5

Last updated: 31 July 2019
Mick E on 29 July 2019

Category: Uncategorised

Replies: 8

Last updated: 30 July 2019

Dasatinib treatment break
by Mick E (Jul 30)

Alastair, thanks for the information and advice, much appreciated!

by AlastairC (Jul 30)

Mick, just one other thought. If you're near Doncaster it might be useful for you to go to the patient day at the Armouries in Leeds on 21 September - see the pinned thread at the top of this

by AlastairC (Jul 30)

Thanks. Next time you see them in Doncaster also ask them where your PCR testing is done - many regional general hospitals don't have the equipment to do it and they go to a specialist centre.

by Mick E (Jul 30)

Alister I’m currently under the NHS in Doncaster. I’m not sure if they are in contact with the specialist treatment centres. The condition has been responding very well to
Category: Uncategorised

Replies: 8

Last updated: 30 July 2019
jess81 on 29 July 2019

Category: Side effects

Replies: 3

Last updated: 30 July 2019

Newly diagnosed
by alexmcpee (Jul 30)

Hi Jess,
Sorry to hear of the diagnosis it’s a scary time for all. But it’s not as scary as it all seems. I was diagnosed with a massive spleen and a wbc of 330!
15 months later I am

by jess81 (Jul 30)

Thank you so kindly for the informative response. I’m very appreciative. This is all new to my father and myself so I’m trying my best to be as informed as possible. As he gets more test

by AlastairC (Jul 29)

Hi Jess. The normal range for WBC is between 4 and 11, which makes 53,000 sound pretty scary. However, there are people on this forum who were diagnosed with WBC into the hundreds of thousands, and

by jess81 (Jul 29)

Hi there. My father has recently received some blood results and doctors are pushing towards a CML diagnosis. He is 61. His CBC came back with an elevated wbc 53,000 and spleen slightly enlarged.
Category: Side effects

Replies: 3

Last updated: 30 July 2019
MarkP66 on 29 July 2019

Category: Uncategorised

Replies: 11

Last updated: 30 July 2019

Day one of the rest of my life
by alexmcpee (Jul 30)

Hi Mark!
As others have said welcome to the club no one wanted to join!
You’ll have lots of questions and this is the best place to get answers. Honestly without this site I’d have been

by MarkP66 (Jul 30)

Hi Dusty
Many thanks for this and appreciate the reply and help
Mark

by Dustylloyd (Jul 30)

Hi mark, I was diagnosed nearly 5 years ago and can’t believe how good things seem to be, obviously at the start shock, worry, and probably feeling sorry for myself but the good days far

by MarkP66 (Jul 30)

Hi Nimbus.
Many thanks for taking the time to post for me.
Given its only day 2 I await what surprises the drug will bring me ! I have my 200mg awaiting when I get home for
Category: Uncategorised

Replies: 11

Last updated: 30 July 2019
alexmcpee on 24 July 2019

Category: Uncategorised

Replies: 5

Last updated: 30 July 2019

Today’s 24th July - CML patient group kings college.
by alexmcpee (Jul 30)

Hi Nicola,
Sorry I missed you. Maybe next time. I loved meeting everyone. Strange thing to say but we all have an instant connection albeit over this.
Take care
Alex

by nicolaclubb (Jul 30)

Hi Alex
I was also attended the support group at Kings. Had to leave early as got a message saying the trains were being delay/cancelled because of the heat.
I found everything really

by alexmcpee (Jul 25)

Hi Debbie,
Wow you’re doing great I’d be so chuffed with those levels. I am not yet in MMR but close and hope to be so whenever that may be. I haven’t always been calm it’s

by AlastairC (Jul 25)

Hi Debbie,
There have been several trials about dose reduction and stopping treatment which have been completed. Prof Richard Clark talked about the Destiny Trial at the patient day last year - you
Category: Uncategorised

Replies: 5

Last updated: 30 July 2019
Parklife on 29 July 2019

Category: Other conditions

Replies: 3

Last updated: 30 July 2019

Advice and work
by Parklife (Jul 30)

Thanks for getting back. I do agree that is would seem the spectrum of effects on each individual via disease and treatment is broad, it makes trying to wonder what is normal or a trend, hard.
I

by AlastairC (Jul 30)

Hi just a thought on the work thing - the Equality Act 2010 requires your employer to make reasonable adjustment to your work to help you deal with your cancer diagnosis. It may be worth gently

by slynch (Jul 30)

Hello,
Sorry to hear you haven't been feeling well. I don't expect that anaemia at those levels is enough to explain your signs however your GP would be the best person to ask. I wanted to

by Parklife (Jul 29)

Hi all.
It's been sometime since I came on the forum. Life and work have been so busy, among a few other things.
CML diagnosis 6 year ago. Bosutinib daily 400mg.
I just wanted to throw out a couple
Category: Other conditions

Replies: 3

Last updated: 30 July 2019
bpngoc2 on 30 July 2019

Category: Getting help

Replies: 0

Last updated: 30 July 2019

Mom not responding well to 3 TKIs
by bpngoc2 (Jul 30)

Hello,
My mom (age 65) was diagnosed with CML a couple months ago in accelerated phase. The doctor started my mom on hydroxyurea first while waiting for the approval of Sprycel/dasatinib. When
Category: Getting help

Replies: 0

Last updated: 30 July 2019
scuba on 27 July 2019

Category: Uncategorised

Replies: 5

Last updated: 29 July 2019

bcr-abl prevalence in non-CML patients
by Sarah63 (Jul 29)

Here is the research I return to repeatedly, relating the poor function of P53 to CML, and the potential remedy through Misoprostol (ProstaglandinE1 kick-starts the P-53).
I just finished

by israel (Jul 29)

Interesting. Putting this in perspective, you can argue that BCR-ABL is a symptom, or one of the symptoms, rather than the cause of CML. Maybe, TKI treatment is a symptom suppressor.

by scuba (Jul 29)

The number nine and number 22 chromosomes are bound tightly in the nucleus right at the bcr, abl breakpoints. It's any wonder that CML is not more prevalent. But I suspect that despite 9;22

by David Fitz (Jul 28)

Fascinating. I knew BCR-Abl could be seen in otherwise healthy people - but I never expected it could be even close to 1%, never mind 10%.
Category: Uncategorised

Replies: 5

Last updated: 29 July 2019
Steve Q on 25 July 2019

Category: Other conditions

Replies: 1

Last updated: 28 July 2019

CML - Gleevec - Renal Failure?
by johnw1001 (Jul 28)

Hi Steve,
From what I have read about the impact of Gleevec/imatinib on the key organs of the body it seems that the drug is eventually largely expelled through the faeces (often with a brown

by Steve Q (Jul 25)

Does anyone have any information on gleevec and any relation to renal failure?
I know it can affect creatinine ratio, which can be a false indicator of renal failure. However, if there is blood
Category: Other conditions

Replies: 1

Last updated: 28 July 2019
Chuckster on 25 July 2019

Category: Blood tests

Replies: 0

Last updated: 25 July 2019

New blood Test Results: What does this mean?
by Chuckster (Jul 25)

Switched labs from Quest Diag. to Lab Corp:
Last 3 results from Quest were all 0.000 not detected both on FISH and BCR/ABL1 etc.
Now these new results from Lab Corp:
b2 a2 IS %: 1.146
b3
Category: Blood tests

Replies: 0

Last updated: 25 July 2019
Ontasigna on 19 February 2019

Category: Treating CML

Replies: 2

Last updated: 24 July 2019

Need advice : urgently
by David Fitz (Jul 24)

45 days is not a long time, with your spleen receding again there's all sorts of movement going on inside you - especially when it was large at diagnosis.
It will settle - it's really common

by alexmcpee (Jul 24)

Hey,
I too had 22cm Spleen at diagnosis and went back to normal after about 6weeks. I had some pain in that area as it returned to its normal size but it was felt in my back rather than the front.

by Ontasigna (Feb 19)

Hi all,
Need your advice/suggestions.
I have pain in my left upper abdomen since last 4 days. My wbc count is normal- 5300.
I had enlarged spleen 22 cm at dx - 45 days back and i am currently on
Category: Treating CML

Replies: 2

Last updated: 24 July 2019
David Fitz on 24 July 2019

Category: About CML

Replies: 3

Last updated: 24 July 2019

UK CML Patient Day 2019 - Leeds, 21st September
by David Fitz (Jul 24)

I would hope that issue was specific to the location last year and that the audio is easier to follow at the Leeds venue this year.

David.

by Nimbus2 (Jul 24)

Last year's meeting was excellent, but I really struggled in hearing some of the presenters over the sound system. Those who spoke more quietly or at a distance from the microphone were

by alexmcpee (Jul 24)

Looks great I may attend this. I am headed up to Kings College Hospital today for the talk at 2 - 4:30. I’ll be using more as an opportunity to meet fellow CML’ers. But of course listen

by David Fitz (Jul 24)

For those patients in the UK, the annual CML Patient day will be in Leeds this year on September 21st. It's a great day to learn more about CML, and get the opportunity to be able to ask the
Category: About CML

Replies: 3

Last updated: 24 July 2019
Vikram on 28 June 2019

Category: Uncategorised

Replies: 10

Last updated: 24 July 2019

Question?
by alexmcpee (Jul 24)

I would concentrate on what you have CML and not what you don’t have. I can see you are suffering from much anxiety I do get it. Live your best life, you’re doing so well I would be so

by Vikram (Jul 24)

One more question
CML and Cml treatment (tki IMTINIB.....) increases risk of diabetes
PLEASE REPLY
ANY IDEA.....

by alexmcpee (Jul 15)

Wow you’re doing great you’ve got nothing to worry about. As the others have said you don’t need the evidence, the evidence we have says you’ll live a normal life span and

by Vikram (Jul 13)

Thanks for reply
How long undetectable possible?? (2011, 12,13,14,15,16,17,18 undetectable)

( lifetime possible????)
Any idea..
Any research...
HOW LONG TFR POSSIBLE??? (ONLY 2 YEAR???)(
Category: Uncategorised

Replies: 10

Last updated: 24 July 2019