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ayaz ahmad magray on 26 March 2018

Category: Blood tests

Replies: 2

Last updated: 2 April 2018

Slight increase in bcr abl
by kat73 (Apr 2)

I would wait for another PCR to see if there is a trend. What numbers you have now are both safe and their difference statistically insignificant. Most practitioners are not starting

by MartinZA (Mar 27)

Hi there
Your results are way better than mine ever were - I was also on 100mg Sprycel (dasatinib) and it took me 18 months to get to 0.22%. I stayed on 100mg and eventually reached lower -

by ayaz ahmad magray (Mar 26)

I was daignosed in may 2017 taking sprycel 100mg. In december 2017 my bcr abl % was 0.1272 and in march2018 it slightly increases 0.2247 my hemotoligst wants to increase my dose to 140 mg if next
Category: Blood tests

Replies: 2

Last updated: 2 April 2018
tidbit2354 on 30 March 2018

Category: Children & young people

Replies: 2

Last updated: 31 March 2018

Need help understanding what I was told
by scuba (Mar 31)

Tidbit ... You may or may not have CML. Most important measurement is not PCR at this stage.
You should have had a FISH test (number of CML cells under the microscope) done. You mentioned you had a

by Romo (Mar 31)

Many people have traces of CML. Most don’t develop it.
Testing nowadays shows all sorts of possible maladies.
Your Doctor is right to allow this anomaly to reveal itself
before a diagnoses

by tidbit2354 (Mar 30)

I need help understanding what my hematologist told me
So I can remember at least 10yrs of my wbc yo-yoing up and down. I went to my PC and he did a rountine cbc and my whites were around 15,000 and
Category: Children & young people

Replies: 2

Last updated: 31 March 2018
Ilah Grimes on 31 March 2018

Category: Side effects

Replies: 1

Last updated: 31 March 2018

Pregnancy
by David Fitz (Mar 31)

Hi there,
Sorry for the short response, I'll try to post more detail later but basically all the latest evidence shows that it is perfectly fine to father a child whilst taking imatinib. No

by Ilah Grimes (Mar 31)

Hello everyone! I am new here. My partner has been diagnosed with Chronic Myleloid Leukemia. We have a 2 year old son, and before the diagnosis have lost two babies. The first loss was at 9 weeks,
Category: Side effects

Replies: 1

Last updated: 31 March 2018
MartinZA on 26 March 2018

Category: Treating CML

Replies: 4

Last updated: 28 March 2018

Imatinib or not?
by MartinZA (Mar 28)

Hey Lucas!
Great to hear from you, my friend. Thank you for your encouraging comment - I would also love to wait until next year before making the change, but unfortunately my doctor

by Lucas (Mar 27)

Hey, martin! I wouldn't worry about the pcr result - is within the margin of error and still MMR, so you had a confirmed MMR! About the change to glivec, if i were you, i would wait some more time.

by MartinZA (Mar 27)

Hi David
Thank you, as always, for responding so quickly and for helping to put my mind at rest regarding the efficacy of imatinib. You have no idea how much it helps me to read your messages

by David Fitz (Mar 26)

Hi Martin,
The differences in those results are well within statistical margins of error. I know you're seeing the rise and a 60% figure and worry, but I always think it's worth looking at
Category: Treating CML

Replies: 4

Last updated: 28 March 2018
Amit on 25 March 2018

Category: Side effects

Replies: 2

Last updated: 27 March 2018

Rashes and dry skin
by Amit (Mar 27)

Thx David.

by David Fitz (Mar 27)

Hi Amit,
Dry skin is a pretty common complaint, I'm afraid. I find diprobase cream works well on the really dry spots. It's a thick emollient so probably not suitable for use all over your

by Amit (Mar 25)

Almost a year into 400mg gleevac i have started developing rashes. Although they are only around my legs i haven't really bothered much about it. Though dry skin has taken over all over ylmy body
Category: Side effects

Replies: 2

Last updated: 27 March 2018
Chuckster on 26 March 2018

Category: Blood tests

Replies: 2

Last updated: 27 March 2018

New Blood Work Numbers (Initial Results)
by Chuckster (Mar 27)

Thanks!

by scuba (Mar 27)

You're doing fine. Stay on top of your blood counts and test every week until you stabilize.
Sprycel is well known for myelo-suppression. Neutrophils and platelets are the main cell counts to watch

by Chuckster (Mar 26)

Just got the blood-work results from Friday
I've been on Sprycel for a total of 14 days so far:
WBC went down from 19.8 to 16.6
RCDW went up from 14.6 to 15.6
Platelet Count dropped from 142 to 119
Category: Blood tests

Replies: 2

Last updated: 27 March 2018
AlastairC on 23 March 2018

Category: Uncategorised

Replies: 1

Last updated: 24 March 2018

Amazon Smile or Easyfundraising?
by David Fitz (Mar 24)

Hi Alastair,
Really either is great! We've just implemented the Amazon Smile option as it doesn't require any additional sign up, and you don't need to remember to begin your purchase through

by AlastairC (Mar 23)

Hi. I have just read the Amazon Smile link on the site. I have for some years connected to Amazon and other e-commerce sites through easyfundraising.com where I have CML SG set up as my chosen
Category: Uncategorised

Replies: 1

Last updated: 24 March 2018
PTeixeira on 22 March 2018

Category: Treating CML

Replies: 5

Last updated: 23 March 2018

My story
by cmljax (Mar 23)

If your PCR is stable at MMR or better, dose reduction should definitely be on the table with your doc.

by scuba (Mar 22)

PT - You might be having a deep deficiency in Magnesium given the leg pain. Full dose Sprycel can easily cause deficiency to occur.
Consider taking 400 mg (split morning and just before sleep) of

by PTeixeira (Mar 22)

Hello... I’m on 100mg. It’s just ALOT OF LEG PAIN. makes it hard to walk and do thing... I actually tried stopping my Chemo for some relief but my cancer came back a month later so I absolutely had

by kat73 (Mar 22)

What are your side effects?
Category: Treating CML

Replies: 5

Last updated: 23 March 2018
shayner on 22 March 2018

Category: Uncategorised

Replies: 10

Last updated: 23 March 2018

Treatment around the country
by shayner (Mar 23)

That’s really true David, thanks, I can sometimes over think it all! It’s just when you are making a big lifestyle change and it’s non reversible you want to cover all the possibilities - I

by David Fitz (Mar 23)

It is indeed possible that the excipients (fancy word for the non-active ingredients) in the generics could cause some people problems. But also people sometimes get health issues and are quick to

by shayner (Mar 23)

Thank you Alistair, if that’s all I have to worry about I will think myself very lucky! Medicines supposed to taste bad, right?!

by AlastairC (Mar 23)

Hi, I moved to the Wockhardt generic on 400mg about 18 months ago and had no adverse impacts compared to the Novartis Glivec. Went down to 200mg 6 months ago. Maybe I am just lucky. The one thing I
Category: Uncategorised

Replies: 10

Last updated: 23 March 2018
Justine on 11 March 2018

Category: About CML

Replies: 5

Last updated: 21 March 2018

Bloody nose
by Justine (Mar 21)

Oh Tony Romo, I believe you have a good heart as well as a good sense of humor. Thanks for making me laugh.

by Romo (Mar 19)

I got a bloody nose standing up one time.
I stood up in an Irish pub and asked why
ST. Patrick didn’t get rid of all the snakes.
Of course I was drunk on green beer and
claming I was

by Justine (Mar 14)

Thank you both.

by campanula (Mar 13)

Hi Justine - I had this problem about a year ago, one year after diagnosis. It lasted about a month - really debilitating, as they were gushers. I believe it was caused by a
Category: About CML

Replies: 5

Last updated: 21 March 2018
JacqJohn on 19 March 2018

Category: Treating CML

Replies: 4

Last updated: 21 March 2018

Edema with Imatinib
by Romo (Mar 20)

TKI’s shrink capillaries. Drinking more water will not mitigate this.
In some organs like eyeball and kidneys it’s the capillaries that are the life
and the hydration. Kidneys are full of

by kat73 (Mar 20)

I know there are many who swear by slugging down liters and liters of water every day, but I'm not one of them. I've had too many docs wave their hands at me and say the whole 64 oz per day

by JacqJohn (Mar 20)

Hi Kat,
Thanks for the reply. Yes I have those signature droopy eyelids. For legs is not everytime I see it.
i will try to reduce salt intake. Just wonder if drinking much more water (at least 2

by kat73 (Mar 19)

Unfortunately, this is a signature side effect for Gleevec. There is even a term, "Gleevec Eyes." I have never found anything to help, although it can be made worse by a high salt intake
Category: Treating CML

Replies: 4

Last updated: 21 March 2018
scuba on 20 March 2018

Category: Treating CML

Replies: 0

Last updated: 20 March 2018

Decisions in the Clinic: Treating Patients With Chronic Myeloid Leumeia
by scuba (Mar 20)

Decisions in the Clinic: Treating Patients With Chronic Myeloid Leumeia
https://www.cancertherapyadvisor.com/michael-deininger-md-phd/section/8095/
This is a nice summary of practical
Category: Treating CML

Replies: 0

Last updated: 20 March 2018
JohnFromChicago on 28 February 2018

Category: Uncategorised

Replies: 13

Last updated: 20 March 2018

Dose Reduction 5 Week PCR Test Result (.01 to .04)
by scuba (Mar 20)

I have decided that if I test "undetected" again in September (I am on a six month testing schedule) - I will stop Sprcyel and "test" my natural ability to remain in full remission (i.e.

by cmljax (Mar 20)

Happy for you Scuba - keep it up

by JohnFromChicago (Mar 20)

Congrats on another "undetected"!!! No Sprycel sounds like my favorite kind of Sprycel.

by scuba (Mar 19)

John - Stay the course. You are doing fine. As long as your measurements are within one log (factor of 10), you are within the noise of the test.
I know it's difficult psychologically - but then
Category: Uncategorised

Replies: 13

Last updated: 20 March 2018
cmljax on 17 March 2018

Category: Uncategorised

Replies: 3

Last updated: 20 March 2018

P190 testing
by cmljax (Mar 20)

Thanks for the response and encouraging words Sandy. I know I overreacted, but I think it was in part due to my onc not providing this kind of feedback even though I know it form being part of

by Romo (Mar 18)

They do the same for me. I think it’s standard for the ticket.
Your oncologist would need to order additional mutation
testing before the lab will do it. This order would be
called for if

by sandy craine (Mar 18)

From what I have read, only 1% of CP CML patients have p190 alone. Given you have always been negative for p190 so I would say this may well be over-testing/over worrying. Those with this

by cmljax (Mar 17)

My PCR regimen has always included testing for both p210 and p190. Just curious if anyone else is also always tested for both of these translocations. My p190 test has always been negative.
Category: Uncategorised

Replies: 3

Last updated: 20 March 2018
Liamsdad on 6 March 2018

Category: Treating CML

Replies: 3

Last updated: 16 March 2018

New Drug that supposedly kills the stem cells
by Romo (Mar 16)

Here is another one.
https://www.cancertherapyadvisor.com/chronic-myeloid-leukemia/chronic-le...
I sure hope they cure CML before the End Times.
I don't want to die before I'm cured of cancer.
Romo

by Romo (Mar 9)

Seems to be gaining a little more traction.
https://www.youtube.com/watch?v=ZMdKQcq9s5E

Romo

by RC Kirk (Mar 6)

Hopefully it will work as well in us as it does in the mice! I wonder how long before they know if this will work and then how long until it's available to us?

by Liamsdad (Mar 6)

In the 2 years since I've been diagnosed I've seen a few of these types of articles but this looks promising!
https://www.businesswire.com/news/home/20180305005966/en/City-Hope-Study...
Category: Treating CML

Replies: 3

Last updated: 16 March 2018
Shamshad Ali on 14 March 2018

Category: Side effects

Replies: 5

Last updated: 16 March 2018

Married
by Shamshad Ali (Mar 16)

Thank you so much dear romo

by Romo (Mar 15)

Not only can you get married and have kids you can play
professional Hockey. Or perhaps football. Or Cricket.
Or chess, or be a Doctor and cure the darn thing!
No limits.
http://www.

by David Fitz (Mar 15)

Then I think you have nothing to worry about in terms of marriage or managing to father children.
David.

by Shamshad Ali (Mar 15)

8 years ago I was diagnosed with cancer

And i am taking 400mg imatinib on daily basis
Category: Side effects

Replies: 5

Last updated: 16 March 2018
Alisa Gilliam on 15 March 2018

Category: Side effects

Replies: 2

Last updated: 15 March 2018

Neutropenia after 1 month on 400 mg imatinib
by kat73 (Mar 15)

Alisa - Very often a drug break will enable a successful re-trial, even at the same dose. Sometimes it takes several tries. Lowering the dose is an option, too. I don't have

by Romo (Mar 15)

What are the chances that you would be who you are...

Romo

by Alisa Gilliam (Mar 15)

Doctor took me off imatinib for 2 weeks after my neutrophils dropped to 0.0. Now that they are back to normal he told me to resume treatment at same dosage. What are the chances of becoming
Category: Side effects

Replies: 2

Last updated: 15 March 2018
Dinesh Reddy on 15 March 2018

Category: Treating CML

Replies: 7

Last updated: 15 March 2018

P230 (E19A2) CML
by David Fitz (Mar 15)

Just one word of warning ... pomegranate juice may interact with an enzyme (CYP3A4) that is important in breaking down nilotinib. Whilst a few pomegranate seeds in a salad isn't going to cause

by Dinesh Reddy (Mar 15)

Hello scuba ....
First of all lemme thank u for the reply, I was also doing some research on internet and found that Nilotinib is the medicine which got good response in P230 CML

by Dinesh Reddy (Mar 15)

Hello maaam ellie thanks for the reply ..... ya it’s kind of rear so was bit worried and thought to ask the expert openion over here .... & really thanks for the reply .... tomorrow is the

by scuba (Mar 15)

Hi Ellie,
From Dinesh's post:
"...a micro transcript BCR-ABL was detected in P230( E19A2)"
That is the key phrase. BCR-ABL WAS detected. They didn't know to look for it which is why it didn't show
Category: Treating CML

Replies: 7

Last updated: 15 March 2018
Saraberkenkotter on 10 March 2018

Category: Side effects

Replies: 3

Last updated: 13 March 2018

Awful headaches
by Saraberkenkotter (Mar 13)

You are now on tasigna? Were on sprycel before?

by davewell (Mar 12)

Hello,
what time do you usually take Sprycell? What is your dosage? How long have you been on it?
I am asking because for me (80mg) the side effects "wave" strikes more or less 4-6 hours after

by Harsh (Mar 11)

Yeah,mild headache like an hangover after waking up.i have gained around 16 pounds.I also have pain in my left leg just below the shins.I am on tasigna for 15 months and the side effects had reduced

by Saraberkenkotter (Mar 10)

Help!!

I am taking sprycel (desatinb) and have only, uuntil recently, had minimal side effects such as water retention and skin rash. But lately it has been getting so much worse! I wake up
Category: Side effects

Replies: 3

Last updated: 13 March 2018
RodM on 4 March 2012

Category: Uncategorised

Replies: 11

Last updated: 12 March 2018

Licenses and Medicals
by Anonymous (Mar 12)

Hi guys,
I wanted to be a pilot and basing from your replies i could still be. Do i need to be in molecular remission in order to do so?

by Anonymous (Mar 12)

Hi guys,
I wanted to be a pilot and basing from your replies i could still be. Do i need to be in molecular remission in order to do so?

by RodM (Jul 25)

Yup - left a note on another thread, but yes, I did a week of 2 dives/day down to about 25m, and then 2 weeks at up to 4 dives/day on Nitrox, max 29m, over 4 hours under a day and no issues at all.

by David Fitz (Jul 23)

Hi Rod,
Have you been SCUBA diving on dasatinib yet? I went a month or so ago - just for a pretty easy day of diving, but didn't want to push it on the first time back in the water. All went pretty
Category: Uncategorised

Replies: 11

Last updated: 12 March 2018