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Che Mahilom on 24 May 2019

Category: Drug-drug interactions

Replies: 1

Last updated: 25 May 2019

Hi Levs
by Sarah63 (May 25)

There is a Facebook Group named “CML International Network Journey to a Cure” where this question about finding TKI in India and the Philippines comes up often. You may both want

by Che Mahilom (May 24)

My mom needs Imatinib 100 mg, but it is very expensive in philippines. I try to search for the cheapest price or the manufacturer and i found this site discussing about the medicine. Its very
Category: Drug-drug interactions

Replies: 1

Last updated: 25 May 2019
Aroura111 on 22 May 2019

Category: Blood tests

Replies: 12

Last updated: 25 May 2019

Anyone have a PCR result above 100% at diagnosis?
by Sarah63 (May 25)

Scuba,
This is of very high interest to me: (quoting you):
“ Random testing of healthy people showed 10% had bcr-abl detected (i.e. 0.01%) p210 clone with no disease...”
“...

by scuba (May 24)

Know that the "7" is a likely place holder and not a real number. PCR values below 0.01 are noise at best. It is indistinguishable from PCRU ("undetected"). Labs will often put

by RC Kirk (May 24)

I received my latest PCR score last week and it was .007% IS. I've been alternating 20mg Sprycel with imatinib for the last year or so. I think I'll take 250mg imatinib for the

by scuba (May 24)

RCKirk:
This is your diagnosis status:
"Yes, my PCR score was above 100%.
PCR - p210 transcript 118.7% IS
FISH - 93%
cytogenetics - t(9;22) translocation in all 20 of the metaphases examined
Category: Blood tests

Replies: 12

Last updated: 25 May 2019
Sarah63 on 23 May 2019

Category: Treating CML

Replies: 5

Last updated: 24 May 2019

Any problem cutting tablets?
by RC Kirk (May 24)

I concur with David and Kat. I've done it and lived to tell about it.
I've even quartered 100mg tablets, but it takes patience to get them lined up just right in the pill splitter.
I

by kat73 (May 24)

(Head nodding in agreement - good idea.)

by David Fitz (May 23)

I agree with you Kat, against the manufacturers guidance. Maybe the best way to do it would to be to make sure to take each half of a pill on consecutive days, ensuring you at least are getting the

by kat73 (May 23)

I did it. Nobody told me not to. I got a pill-cutter box at the pharmacy and it was easy. I did try hard to align each pill correctly in the box so as to make an exact half cut; I
Category: Treating CML

Replies: 5

Last updated: 24 May 2019
Jason Graves on 23 May 2019

Category: Uncategorised

Replies: 2

Last updated: 23 May 2019

No bone marrow
by RC Kirk (May 23)

https://www.ncbi.nlm.nih.gov/pubmed/2239919
One of the listed reasons for it is that you have CML. Low platelets is also frequently seen in patients with dry taps.
If I'm reading it

by Sarah63 (May 23)

I have wondered this also as my BMB came up “dry” in 2012, which I assume means the same thing. I know I’ve still got bone marrow though, cause I’m still ticking. I so

by Jason Graves (May 23)

What does it mean with the bone marrow is empty?
Category: Uncategorised

Replies: 2

Last updated: 23 May 2019
Philiptibbs on 29 March 2018

Category: Treating CML

Replies: 20

Last updated: 22 May 2019

Very Scared and Confused...
by Philiptibbs (May 22)

I'm seeing my Doctor June 3rd and asking to be switched to Sprycel .

by cmljax (May 21)

Have you talked to your doc about switching TKI's. Sprycel would be my first choice because Tasigna is more like Gleevec than Sprycel, so Tasigna might cause the same pain. Also, if

by Philiptibbs (May 16)

They also say opioids are bad and I agree but no one has an answer for why my muscles hurt so bad and how to get rid of the bone pain and my ribs hurt and lower back and mt legs are very weak . They

by Philiptibbs (May 16)

I felt better when I was taking the pain pills but know they are no good for me and thats why I reduced the amount I'm taking . If my back and ribs and legs didnt hurt so much Id get off them
Category: Treating CML

Replies: 20

Last updated: 22 May 2019
bendicco on 17 May 2019

Category: Uncategorised

Replies: 3

Last updated: 22 May 2019

LUMP on back of neck
by MartinZA (May 22)

Hi again
My lumps took over two years to develop so it seems to be a rare side effect that appears late in treatment. I also found only three research papers where the phenomenon was studied,

by bendicco (May 21)

Hi Martin, thanks for responding. Really strange, I had a larger lump and it has gotten smaller, but still there. In the morning when I wake up it is like a hard marble, and as the day passes it is

by MartinZA (May 20)

Hi there
I was on dasatinib and developed a lump on the back of my neck after about 2 years of 100mg daily. The doctor had no idea what it was and took biopsies when several more began to appear.

by bendicco (May 17)

Recently noticed a lump on the right side of the back of my neck. Could this be TKI related?
Category: Uncategorised

Replies: 3

Last updated: 22 May 2019
MartinZA on 22 May 2019

Category: Blood tests

Replies: 0

Last updated: 22 May 2019

Rouleaux in blood
by MartinZA (May 22)

Hi everyone
It's been a long time since I've posted last and, despite complications, my CML is well controlled with my latest PCR test showing 0.033% and MMR on 400mg imatinib. However
Category: Blood tests

Replies: 0

Last updated: 22 May 2019
David Fitz on 17 May 2019

Category: Uncategorised

Replies: 9

Last updated: 22 May 2019

Thread "subscriptions" and notifications
by Sunny (May 22)

David, this is a major improvement and VERY helpful.
I am a newbie, have never posted, but visited the forum few times. Still trying to find my way around.
Many thanks.
pigeon.

by David Fitz (May 21)

Great - I'm pleased you found a way to get it to work for you.
David.

by Nimbus2 (May 20)

David, I have worked this out. It is Kaspersky which is introducing the security layer around the dictation box. But that is not actually the problem. If I disable rich text then Dragon indicates

by Nimbus2 (May 20)

Hello David. I am using Dragon Naturally Speaking. Please, do not spend your valuable time on this since I have a good workaround and it is probably a security measure in my own system that is
Category: Uncategorised

Replies: 9

Last updated: 22 May 2019
cmljax on 18 May 2019

Category: Uncategorised

Replies: 2

Last updated: 21 May 2019

Question for Scuba
by cmljax (May 21)

Thanks Scuba - I told her that there's no such thing as a free lunch, but she said to ask Scuba. I told her it hurts me to think that she thinks that you are smarter than I and she said it

by scuba (May 18)

The short answer is no.
Keto 'salts' will add exogenous ketones to the blood. Your body will burn these ketones and excrete them at the same time to get the levels down, but is not making

by cmljax (May 18)

My wife sent me an article recently about Keto salts, which purport to put the body into ketosis so it will burn fat. If true, these salts are the equivalent of the Atkins diet without all the
Category: Uncategorised

Replies: 2

Last updated: 21 May 2019
jasonswife1686 on 20 May 2019

Category: Uncategorised

Replies: 4

Last updated: 21 May 2019

Blood Counts
by kat73 (May 21)

Hematocrit low, but OK. That's where I was in early days of Gleevec (first two years). Don't mean to make light of your fears - I remember thinking anemia might be going on and I

by Job Guerra (May 21)

Agree with Kat...my WBC has always been around that since starting TKI (21 months). Your Platelets are low though. Mine are always low but like 90-100. Strange that you went from 62-28 but this

by jasonswife1686 (May 20)

ANC - 0.75
Hemotacrit - 28.4

by kat73 (May 20)

Except for platelets, your counts aren't all that low for CML patients early on. In fact, my WBC is always around that, and I've been at this almost 10 years. What is your
Category: Uncategorised

Replies: 4

Last updated: 21 May 2019
bp3 on 7 May 2019

Category: Treating CML

Replies: 5

Last updated: 21 May 2019

Bosutinib and fasting
by bp3 (May 21)

Brc-abl bounces from .6 to 1.1 or so for the last year and a half. Tested every 3 months.

by bp3 (May 21)

Thanks for the link!

by RC Kirk (May 8)

How have your PCR numbers been since a year ago? Are you still taking 500mg Bosulif?
https://www.cmlsupport.org.uk/thread/12160/pcr-risingneed-advice

by RC Kirk (May 8)

Or you could take it without food for a few days and it probably wouldn't cause any problems.
Here's a quote from a review article about bosutinib:
"The effect of food was studied among
Category: Treating CML

Replies: 5

Last updated: 21 May 2019
alexmcpee on 17 May 2019

Category: Uncategorised

Replies: 4

Last updated: 20 May 2019

12 month PCR no MMR
by MartinZA (May 20)

Hi Alex
Hang in there... I know the results are disappointing and I was there myself with 0.57% after a year. But as others have said, the trend is so important and yours is downwards.
I only

by Justine (May 19)

Hi Alex, I was diagnosed April 2017 and did not achieve MMR (0.0924) on imatinib until 21 months. Last checkup, at 24 months, I was lower still, at 0.049. Doing pretty well on imatinib and my

by cmljax (May 18)

Your trend is good and there's no reason to believe it won't continue. While it's impossible not to worry at all (I've been <.003% for 18 months and I still worry a little at

by Tbrand (May 17)

For Months 6 thru 11, .7, .2, .3, etc. then on month 12, .02. It can happen any time. You’ll get there, very close. Now I get .07, .03, .05, .0000, .02, etc. It sucks and will consume
Category: Uncategorised

Replies: 4

Last updated: 20 May 2019
David83 on 19 May 2019

Category: Uncategorised

Replies: 4

Last updated: 20 May 2019

Monosomy 7
by David83 (May 20)

Thank you Scuba, fascinating insight into the issue and your journey. It is of course a stressful time and the waiting around for further tests and indications as to what is happening isn’t

by scuba (May 20)

After I was diagnosed and my PCR fell to around 1%, monosomy 7 and trisomy 8 showed up. I was concerned about the monosomy 7, but was told it can come and go and often disappears in CML patients. It

by David83 (May 20)

Thanks for that link, interesting reading. There is at least some hope there.
It’s just a bit tough at the moment as it’s been so difficult getting the CML under control with infections

by Job Guerra (May 20)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4771850/
I thought you would find this article interesting. Of course everybody is different but keep your head up.
Category: Uncategorised

Replies: 4

Last updated: 20 May 2019
r06ue1 on 20 May 2019

Category: Food & fitness

Replies: 0

Last updated: 20 May 2019

Can Turmeric Supplements Damage Your Liver?
by r06ue1 (May 20)

I know more than a few of us likely take this supplement, just be aware of the side effects.

https://www.healthiguide.com/nutrition/can-turmeric-supplements-damage-y...
Category: Food & fitness

Replies: 0

Last updated: 20 May 2019
Nimbus2 on 19 May 2019

Category: Uncategorised

Replies: 1

Last updated: 19 May 2019

Searching this site
by David Fitz (May 19)

It certainly hasn't been intentionally removed!
It's showing up fine for me on my phone, but we have made some technical changes in the last few days so perhaps something inadvertent

by Nimbus2 (May 19)

The search function on this site really was very good but I notice that it has been removed.
The site can be searched using Google by entering the following into the browser address bar:
site:https
Category: Uncategorised

Replies: 1

Last updated: 19 May 2019
jmonzione on 9 May 2019

Category: Uncategorised

Replies: 18

Last updated: 19 May 2019

Looking for resources to aid discussion about lowering dose of sprycel
by Sarah63 (May 19)

Actually, at one point I got down to 11%, but... still... yes. And I am a lot to blame, I was not diligent with compliance. Also my doctors (two different ones) did not share the info on milestones

by RC Kirk (May 19)

Hi Sarah,
Am I reading correctly that your PCR scores never got below 32% while you were on imatinib? I'm surprised you were kept on imatinib for so many years with such a high PCR!
Kirk

by scuba (May 18)

Sarah,
"He would not read either article but offered me speed. No thank you"
.... what does that tell you about these kind of "doctors"?
Your sprycel response was very similar to

by Sarah63 (May 18)

Hi Kat73,
My response for 7 years on Imatinib hovered between 88% and 32% (IS), till mutation was found in 12/18. I changed to Sprycel in 01/19. First month 100mg, dangerous suppression. Off for
Category: Uncategorised

Replies: 18

Last updated: 19 May 2019
Gian P on 16 May 2019

Category: Blood tests

Replies: 4

Last updated: 17 May 2019

BCR-ABL RESULTS ARE IN...
by Gian P (May 17)

Kirk,
You are right! I looked into my history and the Gleevec was 400 mg tablet.
sorry for the misinformations, my doctor plan is to increase the Sprycel after the two weeks if the BCR hasn’t

by RC Kirk (May 17)

I'm surprised that when you started treatment you were taking 100mg Gleevec. I've never heard of anyone being started on such a low dose of imatinib.
Has your doctor said what the next

by Gian P (May 17)

Thank you for your reply Kirk,
july 2018 i was diagnosed, and i started Gleevec 100mg. My platelets dropped so i changed to Sprycel 100 mg, my platelets dropped and again Sprycel 80mg, then 60 mg

by RC Kirk (May 17)

https://www.cmlsupport.org.uk/thread/12967/platelets-level-low

Hi Gian,
In your previous post you wrote "I was on Gleevec 100 mg at first". Did you mean 100 mg/day or instead
Category: Blood tests

Replies: 4

Last updated: 17 May 2019
saifur360 on 17 May 2019

Category: About CML

Replies: 1

Last updated: 17 May 2019

Is CML curable or not?
by scuba (May 17)

Your PCR is 0.03 %. You would need your PCR to be < 0.01% for at least two years before trying treatment free remission (TFR). ~50% of patients who try TFR at this point have successful outcomes

by saifur360 (May 17)

Now my RQ-PCR is 0.033 & everyday I am taking Imatinib (Veenat 400 mg)
Is my Hematologist reduce my Imatinib power, When the pcr more down?
I want to know about treatment free remission. If
Category: About CML

Replies: 1

Last updated: 17 May 2019
Nimbus2 on 12 May 2019

Category: Uncategorised

Replies: 4

Last updated: 16 May 2019

Who arranges the annual national CML conference?
by Nimbus2 (May 16)

Thank you, Kat, for this. It is very difficult proving any scientific supposition with a population of one. It seems that haematologists are not necessarily the best qualified people to comment upon

by kat73 (May 13)

In the US schools, a lot of 8th graders (Middle School/Junior High, i.e., 13 yr olds) take a course called, "Scientific Methods and Analysis". You pass with flying colors, Nimbus!

by Nimbus2 (May 12)

Thank you for your response, David.
I was sceptical of my own conjecture that Accord imatinib was acting as laxative. I cycled between Accord and Cipla using each for at least seven days at a time.

by David Fitz (May 12)

It’s arranged by a combination of the NHS clinician sub-group for CML, and us, CML Support.
It’s a good point and maybe we could look into this on the agenda for 2019. I don’
Category: Uncategorised

Replies: 4

Last updated: 16 May 2019
Cali48 on 26 April 2019

Category: About CML

Replies: 10

Last updated: 14 May 2019

Cure for CML
by Damian Gabilondo (May 14)

getting closer
https://www.redaccionmedica.com/secciones/hematologia-y-hemoterapia/logr...

by tiredblood (May 14)

I have numbness and tingling in my hands at times, and becoming more frequent.
I’ve been diagnosed with seronegative spondyloarthropathy (ankylosing spondylitis). I kind of figured it was

by scuba (May 8)

Cancer occurs because our immune system developed (or inherited) a failure to check it. Unless a new gene therapy is 'invented' which trains our immune system to identify and kill cancer

by Harriet (May 8)

my doctor and i had a conversation about a cure,he said that if i was at MR 4.5 for 2 years i could try a medicine holiday,well he said if your blood stays stable for a years,we are still not so far
Category: About CML

Replies: 10

Last updated: 14 May 2019