You are here

Forum

Josie on 8 April 2018

Category: Treating CML

Replies: 2

Last updated: 10 April 2018

CML support in Phils
by sandy craine (Apr 10)

Hi Josie,
http://www.touchedbymax.weebly.com
Contact - Rod N. Padua, President of Touched By Max, Inc.

Sandy

by EvaH (Apr 8)

https://www.themaxfoundation.org/
Its the Max Foundation - hematologists in your country should know about them

by Josie (Apr 8)

Hi there. Josie here from the Philippines. anybody knows organization i can go to seek help in getting gleevec sponsorship?

thanks!
Category: Treating CML

Replies: 2

Last updated: 10 April 2018
Amit on 8 April 2018

Category: Uncategorised

Replies: 1

Last updated: 8 April 2018

Finger nails
by loafer (Apr 8)

No but mine have to be trimmed once a week, before taking Sprycel they were paper thin.

by Amit (Apr 8)

Haa anybody noticed pigmented nails after taking Gleevac 400mg ? I have got that as an apparent side effect. Does anyone else have this ?
Category: Uncategorised

Replies: 1

Last updated: 8 April 2018
Romo on 8 April 2018

Category: Uncategorised

Replies: 0

Last updated: 8 April 2018

For those of you that want to wander around in the weeds
by Romo (Apr 8)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5026293/

Romo
Category: Uncategorised

Replies: 0

Last updated: 8 April 2018
Felix on 7 April 2018

Category: Side effects

Replies: 2

Last updated: 7 April 2018

IMATINIB RASH
by Felix (Apr 7)

HiJohn,thank you so much for taking the time to read my post and to reply.The rash is not so bad Germolene and Vitamin E cream are ok don’t need anything stronger like steroids .I was just a bit

by johnw1001 (Apr 7)

Hi Denise,
In my experience it is is quite common to develop a skin rash as a side effect of a tki such as imatinib.In the broad order of things it is not a condition that would require immediate

by Felix (Apr 7)

Hi, my name is Denise I am 61and this is my first posting.Diagnosed just before Christmas 2017 wow what a Christmas prezzy for me and my family how shocked and stunned we were because I wasn’t
Category: Side effects

Replies: 2

Last updated: 7 April 2018
KevinA on 5 April 2018

Category: Drug-food interactions

Replies: 1

Last updated: 6 April 2018

Diet effect on neutropenia (coffee, supplements)
by scuba (Apr 6)

Hi Kevin,
Welcome to the Forum ...
I had severe neutropenia - dangerous in fact. My neutrophils fell to 0.1 (dangerous is anything below 0.4). I was on Dasatinib (Sprycel) when severe

by KevinA (Apr 5)

Hi All,
I was diagnosed 10 months ago and am on my 2nd TKI (dasatinib first, now nilotinib). Both have given me neutropenia which has really limited how low they can drive my bcr abl %. I have a
Category: Drug-food interactions

Replies: 1

Last updated: 6 April 2018
LouiseS on 24 March 2018

Category: Uncategorised

Replies: 8

Last updated: 5 April 2018

Sprycel dosage reduction
by LouiseS (Apr 5)

Thanks David. Good to hear!
The first reduction was so huge I think this just felt a little disappointing. Also even though he is really doing great overall he does have days when he feels a little

by David Fitz (Apr 5)

Hi Louise,
The ELN Guidelines look for a result of 1% or lower by 6 months to be considered an "optimal" result. He's well, well under this and close to the 12 month "optimal" result of 0

by LouiseS (Apr 5)

Got husband's 6 month abr result today - 0.15. His 3 month result was 0.7 so moving in right direction tho a lot more slowly than first 3 months when he had a 3 log reduction. Is this a good pace

by LouiseS (Mar 28)

He tested 0.743 on 5 Jan test so he will do another test next week . Guess if it’s not good news we have to re think the 50 mg strategy but it also means we will have a good baseline for starting
Category: Uncategorised

Replies: 8

Last updated: 5 April 2018
William1567 on 2 April 2018

Category: Blood tests

Replies: 7

Last updated: 5 April 2018

Concerned about my PCR results
by sandy craine (Apr 5)

Hi Scuba, yes.... See our booklet on q-PCR for a background on chromosomes, what they are, where they are and a nice visual of the 9/22 translocation.
Page 4 onwards. https://www.

by William1567 (Apr 4)

I'm deeply grateful for the replies here. Thank you to all of you!

by scuba (Apr 3)

Hi Sandy,
I think it is important for our community to know and to understand where the number "9" and number "22" chromosome sit in our hematopoietic stem cells.
They are right next to each other.

by sandy craine (Apr 3)

Welcome to this forum William.
To answer your question, I agree with both David and Alastair on this. The lab that does your PCR must have a pretty amazing method of detection. If 2 results
Category: Blood tests

Replies: 7

Last updated: 5 April 2018
dadbags on 22 March 2018

Category: Uncategorised

Replies: 16

Last updated: 4 April 2018

18years w/CML
by cmljax (Apr 4)

Scuba - My last test was <0.003%, detectable but not measurable, whatever that means.
I know I am being tested too often, but again, I have used all of my ammo on gaining agreement with my

by scuba (Apr 3)

No change here Kat ... 9 weeks is more than two months. 1% PCR is the threshold where FISH would even detect CML cells.
As I wrote above, CML is a slow disease when in chronic phase. The key is

by kat73 (Apr 3)

Hold on a minute, Scuba. Not for everyone is CML that slow to reappear or grow. I was consistently getting <0.01 reports when I had to stop my Sprycel for a pleural effusion, twice.

by scuba (Apr 3)

CMLJAX - you are being tested way too often. It is unnecessary and a waste of money and time.
There is no difference scientifically between 0.003% and "undetected" - NONE. "0.003" is below the
Category: Uncategorised

Replies: 16

Last updated: 4 April 2018
kat73 on 9 March 2018

Category: Uncategorised

Replies: 9

Last updated: 4 April 2018

Do TKI's really cause magnesium loss?
by kat73 (Apr 4)

Thanks, Angie. If I had the muscle/joint/bone pain or cramps, I would most certainly be on the magnesium supplement bandwagon by now. I can only present the extreme muscle fatigue and

by AngieH (Apr 4)

Hi Kat,
ive been taking TKIs for 10 years now. About two months after starting in Gleevec, I started getting the bone pain/muscle cramps. My oncologist recommended taking a magnesium supplement,

by scuba (Mar 12)

I take 250 mg of Mg Taurate at night alone (just before sleep). In the morning usually another 125 mg. As long as you space out the dose, your kidneys will take care of the rest.
It really is

by kat73 (Mar 12)

Thanks, Sandy - I'll ask the docs. I suppose it couldn't hurt to just take 250 mg of magnesium taurate a day.
Category: Uncategorised

Replies: 9

Last updated: 4 April 2018
David Fitz on 4 April 2018

Category: Uncategorised

Replies: 0

Last updated: 4 April 2018

Forum spam & user registration - apologies
by David Fitz (Apr 4)

Once again, we are being heavily hit from one particular spammer in India which some of you may have noticed. I have tried to be vigilant and delete all these messages as quick as possible.
We
Category: Uncategorised

Replies: 0

Last updated: 4 April 2018
janlyn28 on 3 April 2018

Category: Drug-food interactions

Replies: 1

Last updated: 3 April 2018

Tasigna and Citrus
by David Fitz (Apr 3)

Just stick away from the grapefruits and you'll be fine. It's really the only citrus you are likely to drink enough of to make a problem. Another one to avoid would be drinking juice from a Seville

by janlyn28 (Apr 3)

I know when you're on Tasigna you are not supposed to have any grapefruit products. But what about other citrus? I thought other citrus was ok but I just read where someone said they stay away from
Category: Drug-food interactions

Replies: 1

Last updated: 3 April 2018
Lbritz on 2 April 2018

Category: Blood tests

Replies: 2

Last updated: 3 April 2018

I do not understand my results
by David Fitz (Apr 3)

Hi Laura,
The answer to this probably heavily depends on when you were diagnosed. When was that?
David.

by AlastairC (Apr 2)

Laura the key thing here is that your results need to be reducing. The fundamentals of this test are explained here.
The reduction you quote is a bit slower than ideal for a 3 month period, but

by Lbritz (Apr 2)

I had a hard time getting my oncologist to return my calls with my lab results. A nurse called me and told me my BCR went from 8.13 to 6.69 over the last 3 months. I have no reference to know what
Category: Blood tests

Replies: 2

Last updated: 3 April 2018
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