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Kara Morgan Morton on 9 August 2019

Category: Uncategorised

Replies: 0

Last updated: 9 August 2019

Anyone on 20mg of sprycel?
by Kara Morgan Morton (Aug 9)

How were you put on 20mg of sprycel? I am one year and 3 months into taking sprycel. I am at 0.000.... praise the Lord. I was on sprycel and ventoclax trial for 7 weeks before getting really sick.
Category: Uncategorised

Replies: 0

Last updated: 9 August 2019
MartinZA on 7 August 2019

Category: Treating CML

Replies: 3

Last updated: 7 August 2019

Going to start fasting on imatinib
by Sueso (Aug 7)

Hi and good luck in your fasting.
I take my imatinib 400 mg after my last meal at 8 pm and this couple days I`m suffering from acid reflux and stomach pain from imatinib and im taking 40 mg

by MartinZA (Aug 7)

Hi scuba
Thanks a lot for the detailed information! I'm so glad I asked as I didn't know that there was a limit as to how many Brazil nuts to eat. I'm going to eat four a day

by scuba (Aug 7)

Hi Martin,
No nausea taking imatinib on an empty stomach? Lucky you!
8 brazil nuts a day could be too many.They are loaded with selenium. Each nut averages 50 ug - some nuts as high as 100 ug. For

by MartinZA (Aug 7)

Hi everyone
After reading the many interesting and informative posts by scuba and others on fasting, selenium, curcumin, Vitamin D and imatinib, I have decided to try my own experiment. I am
Category: Treating CML

Replies: 3

Last updated: 7 August 2019
Trevorp93 on 7 August 2019

Category: Treating CML

Replies: 2

Last updated: 7 August 2019

Next Step after pcr results need advice
by AlastairC (Aug 7)

Hi Trevor. While you have an upward trend the overall level is still pretty low. If your next test result is upwards again, I think mutation testing might be a plan. From the results of that you and

by ColoradoGuy (Aug 7)

I can't speak to all of your questions but I went from 0.111 to 1.2 then switched from Sprycel to Tasigna. First results are 0.36 so it can come back down. Of course I want below 0.1 soon. I know

by Trevorp93 (Aug 7)

Hi everyone, My PCR result went up 0.03 from 0.054 to 0.088 Can anyone give me ideas on what's my next step is? ive been on sprycel for 18 months now. Should i be concerned on my test results
Category: Treating CML

Replies: 2

Last updated: 7 August 2019
Sueso on 1 August 2019

Category: Uncategorised

Replies: 6

Last updated: 6 August 2019

I just been diagnosed with CML
by onekayaker (Aug 6)

Sue,

Hello, I was DX in June last year. I was in the process of actually moving back to Houston when this happened with a random blood work. I had just retired to spend time with

by MarkP66 (Aug 5)

Hi Sue .. how are things going?
Im 8 days in and suffering from bone and joint pain with a little Diarrhoea and sickness and get tired easily
Its hard to get motivated but I’m intent on

by Sueso (Aug 1)

Dear Gof
Sorry to hear about your wife issues I hope she will feel better soon.After I diagnosed with CML I felt my stomach heavy and swollen and abdominal pain
I did colonoscopy and endoscopy the

by Sueso (Aug 1)

Thank you Mark for reply.
Im taking 400 mg a day ,I was thinking to go see herbalist but when my insurance company approved my medigation I started right away. I have appointment with my
Category: Uncategorised

Replies: 6

Last updated: 6 August 2019
gof on 1 August 2019

Category: Uncategorised

Replies: 7

Last updated: 5 August 2019

MMR update
by gof (Aug 5)

Thank you for your input. After we will discuss with my wife's hematologist I will all let you know about the outcomes. I wonder why sometimes it happen and other day not.
Best regards /

by Nimbus2 (Aug 5)

I got the impression initially from some consultant haematologists that they considered the side effects suffered from different generics to be "in the minds" of their patients. I was

by Sueso (Aug 2)

Hi Chris
I`m so glad your wife get better result, and I hope she will be better soon .For the weekness and diarrhea I make Carrot and beet juice every day .
Good luck
Sue

by gof (Aug 1)

David, thank you. That is interesting.
Here in Poland where we live, hospitals are issuing once in a while public tenders for imatinib. They can change drug if there are side effects etc. But I know
Category: Uncategorised

Replies: 7

Last updated: 5 August 2019
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