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alison on 13 September 2019

Category: Uncategorised

Replies: 4

Last updated: 14 September 2019

Starting Bosulif - input please
by alison (Sep 14)

@cmljax His specialist is not as involved in CML as he used to be and you would be way better off consulting with someone who is totally immersed in CML. There are plenty around.

by cmljax (Sep 14)

Thank you so much Alison for this response and for your other response to my post. If you guys are in the US, would you mind sharing the name and contact info for your husband's specialist

by alison (Sep 13)

@cmljax Any CML specialist (as opposed to a community oncologist) will know all the latest dosing recommendations. My husband's specialist expects he may need 200 or 300 mg Bosulif but is

by cmljax (Sep 13)

Hi and good luck to your husband on Bosulif - will be interested to hear if 100 mg does the trick to get him back to MMR and below. Please read my post "Should I try TFR." I am
Category: Uncategorised

Replies: 4

Last updated: 14 September 2019
jasonswife1686 on 13 September 2019

Category: Uncategorised

Replies: 1

Last updated: 13 September 2019

Bcr count
by scuba (Sep 13)

Is this a FISH result or PCR?
What is your blast cell percentage?

by jasonswife1686 (Sep 13)

Hello all.
Its been a while since I’ve posted. I recently had a major spike from 9% less than a month ago to 67% on Monday.
We met with a transplant coordinator and are starting to
Category: Uncategorised

Replies: 1

Last updated: 13 September 2019
MANNI OBEROI on 24 August 2019

Category: Uncategorised

Replies: 8

Last updated: 13 September 2019

Legs are paining
by MANNI OBEROI (Sep 13)

Hi David.....good news no pain now....still taking veenat 400...my wbc is 5000 now...thanks david for ur help and support always

by David Fitz (Sep 2)

Manni,
Sorry for taking so long to reply - I’ve been busy recently.
When I first took Imatinib I had terrible leg pains - dull ache with intermittent sharp, shooting pain.
We tried

by ColoradoGuy (Aug 31)

I also had sleepless nights initially and melatonin and tylenol pm helped. Not a long term solution but will help you get to work for a few days. Take care.

by MANNI OBEROI (Aug 30)

Hi Colorado....all blood tests till today are good but pains headaches little fever at night only making alot trouble to me.....sleepless night are horrible for me..thanks for the advice sir....
Category: Uncategorised

Replies: 8

Last updated: 13 September 2019
Kathyp on 10 September 2019

Category: Uncategorised

Replies: 3

Last updated: 13 September 2019

15 years on glivec
by GEP (Sep 13)

Yep, 15 years in myself and still chronic fatigue. I just try to work through it but i find it’s worse when I have time off and not keeping my mind occupied.
i’m on 300 immatinib and in

by Kathyp (Sep 12)

Hi 600 mg and I’m in mmr x

by David Fitz (Sep 11)

Hi -
I guess my first question is going to be the usual two:

what dose are you on?
what's your latest PCR?

David.

by Kathyp (Sep 10)

Hi all , hope everyone is ok? Been on gluvec now for 15 years and doing fab but the chronic fatigue is overwhelming, seems worse than ever. Do any of you long term glivece users have the same
Category: Uncategorised

Replies: 3

Last updated: 13 September 2019
Chuckster on 12 September 2019

Category: Blood tests

Replies: 1

Last updated: 13 September 2019

FISH Test Results.
by scuba (Sep 13)

No surprise.
Good news.

by Chuckster (Sep 12)

Fish Results: 1.5%
Down 1 % from 2.5% on July 19th.
Just came back from my Oncologist appt.
Staying on 20 MG of sprycel for another cycle ( 60 Days) as she is ok with this as its a downward
Category: Blood tests

Replies: 1

Last updated: 13 September 2019
Tr0glodyte on 12 September 2019

Category: Uncategorised

Replies: 0

Last updated: 12 September 2019

Post transplant donor now has lymphoma - do I need to worry
by Tr0glodyte (Sep 12)

I am 10 years post transplant and in the main doing well. I have just learned that my donor has been diagnosed with non hodgkins lymphoma. I am not due at the hospital for several months. Is this
Category: Uncategorised

Replies: 0

Last updated: 12 September 2019
Mixail on 16 March 2019

Category: Getting help

Replies: 3

Last updated: 11 September 2019

Diet
by scuba (Sep 11)

Enjoyed John W's reply to your question.
I would add that so-called low carb diets and related can be viewed in context to what our bodies have evolved to eat and what has happened to our diet

by JohnCoyle (Sep 11)

Extremely well constructed response there John, apologies for opening an older thread.

As background I was diagnosed with CML over 4 years ago and after not working well with

by johnw1001 (Mar 17)

Hi All,
I think that your post is worth a response if only because we will have seen mention in columns offered by nutritionists of the keto diet and in particular how through diet one might be able

by Mixail (Mar 16)

Hello all, New to CML I was diagnosed about 9 months ago and still trying to figure it out. I was on the internet and saw that a ketogenic diet helps kill cancer cells. Has anyone heard of that and
Category: Getting help

Replies: 3

Last updated: 11 September 2019
jane heather ne... on 3 September 2019

Category: Blood tests

Replies: 10

Last updated: 11 September 2019

Imatinib 400mg disappointing response
by jane heather newberry (Sep 11)

Thankyou all for taking the time to reply. Hopefully i will see a better result next time. Best wishes to you all. Jane

by AlastairC (Sep 4)

yes sorry, blasts at 0 is good!

by scuba (Sep 4)

Blasts at zero at your early stage is excellent. It suggests Imatinib is likely doing its job and as several people wrote above, many so-called "slow" responders do just fine and end up

by kat73 (Sep 4)

Think you meant, "glad to see your blasts ARE at zero"?
Category: Blood tests

Replies: 10

Last updated: 11 September 2019
David Fitz on 9 September 2019

Category: Uncategorised

Replies: 0

Last updated: 9 September 2019

Live Stream of UK CML Patient Day (Sept 21 - 10:00 London, 05:00 New York, 02:00 California, 06:00 Tokyo, 14:30 Mumbai, 19:00 Sydney)
by David Fitz (Sep 9)

For those of us in the UK, the UK CML Patient Day will be on the 21st of September. It’s a really great event and a chance to talk to and interact with CML specialists from around the country
Category: Uncategorised

Replies: 0

Last updated: 9 September 2019
Chuckster on 5 September 2019

Category: Blood tests

Replies: 4

Last updated: 8 September 2019

Latest Blood Test Results BCR/ABL1 .
by Chuckster (Sep 8)

Thank You Sarah!

Chuck.

by Sarah63 (Sep 8)

Bravo! It really seems the 20mg is working quite well.

by Chuckster (Sep 5)

Thanks David!
All tests are blood including the FISH.
Had 1 bone marrow/bone extraction and thats more than enough for that test under local anesthesia thank you very much! LOL!
Should get

by David Fitz (Sep 5)

Hey Chuck - that’s a great result in that timeframe. Looks like that 20mg dose might suit you well!
Don’t get hung up about non detectable. All you’re looking for is a nice sloping
Category: Blood tests

Replies: 4

Last updated: 8 September 2019
Vancouvergirl on 4 September 2019

Category: About CML

Replies: 17

Last updated: 8 September 2019

Re: Blood test questions. Newly Diagnosed with CML Aug. 21/2019
by Vancouvergirl (Sep 8)

Hi nk_godvani,
Okay and yes, I under stand everything you wrote.
I very much appreciate your clear explanation as well.
Thankyou.
VG
I'll post back more specifics in regards to my diagnosis,

by nk_godvani (Sep 7)

Hi

Looking your numbers, the fluctuations in wbc is very normal as wbc whould not be constant for a month.

If you have no any other symptomatic infectious disease then it indicates

by Vancouvergirl (Sep 6)

Hi Nimbus 2,
You wrote: My consultant tells me that four measures are of interest from the full blood count for the CML patient: WBC, haemoglobin, neutrophils and platelets.
Me: I linked my

by Nimbus2 (Sep 6)

My consultant tells me that four measures are of interest from the full blood count for the CML patient: WBC, haemoglobin, neutrophils and platelets. Of course, later you will have the Ph+ (Fish)
Category: About CML

Replies: 17

Last updated: 8 September 2019
Mixail on 6 September 2019

Category: Uncategorised

Replies: 1

Last updated: 6 September 2019

DC vaccine.
by David Fitz (Sep 6)

Looks like it's still recruiting - but since it has a target of 30 patients it looks like not much has happened. No interim data or results have been posted. It's aiming to have data in

by Mixail (Sep 6)

What ever happened to the DC vaccine for CML that was being trialed in 2015.

https://clinicaltrials.gov/ct2/show/NCT02543749
Category: Uncategorised

Replies: 1

Last updated: 6 September 2019
onekayaker on 30 August 2019

Category: Uncategorised

Replies: 1

Last updated: 6 September 2019

ALT results after moving milk thistle intake to evening
by Sarah63 (Sep 6)

Your 27 level ALT is normal range right? Sounds like you did the right thing. And so it seems there was something to the Milk Thistle with Bosuliff.

by onekayaker (Aug 30)

I read where there was concern about milk thistle could interfere with bosutinib when ingested together in the forums . I called Pfizer and they said there is no evidence of a
Category: Uncategorised

Replies: 1

Last updated: 6 September 2019
RSTEVENSON824 on 20 August 2019

Category: Drug-food interactions

Replies: 10

Last updated: 4 September 2019

Fish Oil and CML **
by Sarah63 (Sep 4)

ro6ue1,
I’m curious what type of fish oil you were taking before diagnosis. Did it have a combination of EPA and DHA? Or was it only EPA?

by kat73 (Sep 3)

Thanks, Sandy, for this. I was very interested to read the part about how they measure whether the stem cells have been nailed. I wish these two years would hurry up!

by r06ue1 (Sep 3)

I used to take fish oil daily before my diagnosis so I can say it didn't prevent me from getting it.

My first Oncologist told me to stop taking it so I did. The only

by sandy craine (Sep 3)

Try this link... https://clinicaltrials.gov/ct2/show/NCT04006847?term=NCT04006847&rank=1
...if it still doesn't work then search with the trial number i.e NCT04006847 .... that
Category: Drug-food interactions

Replies: 10

Last updated: 4 September 2019
onekayaker on 29 August 2019

Category: Uncategorised

Replies: 1

Last updated: 3 September 2019

LDH levels
by r06ue1 (Sep 3)

My numbers actually went down once I started Imatinib, I don't know if it is from the drug or from eating healthier (still not where I want to be though). Really the only changes I made

by onekayaker (Aug 29)

My chart at MD Anderson range is 135 - 214 U/L. Last blood work went up to 276. Anyone who lowered their lvl by diet I would like to know what they increased and or took away from
Category: Uncategorised

Replies: 1

Last updated: 3 September 2019
Frenchguy on 26 August 2019

Category: Uncategorised

Replies: 12

Last updated: 3 September 2019

Question about Pcr
by Frenchguy (Sep 3)

I call another time the lab to know exactly what was going on and had the head who is camping on her arguments.
She told me a bit more, they took exactly the same amount of dna (not sure of the name

by David Fitz (Sep 2)

I think wIth such a low PCR result you have nothing to worry about. It’s a bit unusuaL. If your results were 0.8% or something you would need to get to the bottom of it, but with your

by Frenchguy (Sep 2)

Ok, so that is inducing that my pcr is not valide if I understand. So I will have to wait for 3 months to see if all is ok.

by David Fitz (Sep 2)

The control gene sample size changes due to the quality of the test. It’s not directly controllable by the lab.
Temperature, age of the sample and all sorts of factors play into it.
I don
Category: Uncategorised

Replies: 12

Last updated: 3 September 2019
saifur360 on 3 September 2019

Category: Side effects

Replies: 0

Last updated: 3 September 2019

Head pain (Back side)
by saifur360 (Sep 3)

I have continue imatinib 400 mg last 2 years 9 months. I also do tension for my financial crisis. I also trying to get a official job.But last one month sometimes I feel a little head pain of back
Category: Side effects

Replies: 0

Last updated: 3 September 2019
Justine on 24 April 2018

Category: About CML

Replies: 16

Last updated: 2 September 2019

Weird cancer (writing therapy)
by David Fitz (Sep 2)

Very nicely written Justine. Sums up how a lot of us feel, or have felt.
It does get easier, as you adapt to your new normal - as I’m sure you’re finding.
But don’t skip your

by Crfharris (Aug 31)

Thank you for saying exactly what I felt just one month ago. Although I feel much better about my prognosis, CML is still the first thing I think of in the morning and last thing before I go to

by Justine (May 9)

Chuck, how did your blood test result come out?

by MartinZA (May 2)

Hi Justine
I just want to thank you for your post - you have summed up what all of us go through on a daily basis and I think it was really courageous of you to put it into words! One quick
Category: About CML

Replies: 16

Last updated: 2 September 2019
Chuckster on 30 August 2019

Category: Blood tests

Replies: 2

Last updated: 30 August 2019

Blood Test
by Chuckster (Aug 30)

Thanks Scuba!

by scuba (Aug 30)

Look forward to seeing your results. I am optimistic for you!

by Chuckster (Aug 30)

Just had blood drawn this morning from LAB CORP.
Four tests: WBC .CMP, FISH(IS) and ABL/BCR Quantatative PCR etc..
Will post results in the next week or so when they come in.
Category: Blood tests

Replies: 2

Last updated: 30 August 2019
ColoradoGuy on 16 August 2019

Category: Side effects

Replies: 3

Last updated: 29 August 2019

Dull Pain In Left Buttocks
by johnw1001 (Aug 29)

Hi there,
Thanks for the update .I think that I know have a better picture of the issues involved if one does not reduce to MMR or when one loses MMR.Some years ago I lost my MMR and the PCR s rose

by ColoradoGuy (Aug 21)

John - Thank you very much for the reply as I sometimes post and never know when I will get info back (it's like fishing, lol).
I have been treated for almost exactly 2 years (two

by johnw1001 (Aug 21)

Hi there,
I am responding because I have had similar issues and it might be interesting to relate these to you.You do not say how long you have been treated for CML nor the PCR scores etc .I do not

by ColoradoGuy (Aug 16)

Just wanted to get everyone's thoughts as I have been feeling a dull pain in my left butt cheek and was wondering if It could be a result of changing to Nilotinib. I had an ultrasound in
Category: Side effects

Replies: 3

Last updated: 29 August 2019