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Meg on 11 April 2018

Category: Uncategorised

Replies: 3

Last updated: 15 April 2018

Advice please!
by sandy craine (Apr 15)

Hi,
I am pretty sure your doctor would not encourage you to stop therapy if your PCR result had not shown you to have had a stable molecular response- at least MMR (0.1%) for some years. It would be

by Meg (Apr 11)

Thank you so much for your very informative reply, such great news on your friend

I have been on bosutinib for over 2 years & imatanib for a year before. Im not sure of counts at moment

by scuba (Apr 11)

Meg,
Need more information:
1. What is your current PCR level?
2. When were you diagnosed, how long have you been taking TKI's? (i.e. Bosutinib or other)?
3. Are you pregnant now?
I have a close

by Meg (Apr 11)

Hi everyone

I'm a 40 year old cml patient currently on bosutinib 500mg. I stopped taking them over 30 days ago in the hope of getting pregnant, I so desperately want a baby and would then
Category: Uncategorised

Replies: 3

Last updated: 15 April 2018
Chuckster on 14 April 2018

Category: Side effects

Replies: 10

Last updated: 15 April 2018

New Blood Work Numbers ( 2nd set of Results)
by Chuckster (Apr 15)

Thanks Sandy.
I have the shortness of breath but have not experienced any chest pain at all
Also, no cough at all.
I am scheduled for another chest x-ray in approx 2 weeks to see if the pneumonia

by sandy craine (Apr 15)

Hi Chuckster,
You sound like you are/have experienced some of the higher grades of side effects to TKI therapy and may well be intolerant of Sprycel. According to the manufacturer's website, some of

by Chuckster (Apr 15)

Thanks for the info!

Chuck.

by chevyflame (Apr 15)

Hi Chuck,
I had similar breathing issues and was eventually diagnosed with a severe pleural effusion although I had complained about the breathing issues from the start of taking Sprycel. Started at
Category: Side effects

Replies: 10

Last updated: 15 April 2018
Nj on 11 April 2018

Category: Uncategorised

Replies: 8

Last updated: 12 April 2018

New to CML
by LouiseS (Apr 12)

Welcome to this community. I hope you will find it a valuable resource for information and support.
My husband was diagnosed last Sept. The first couple of months were rough at times dealing with

by T and M (Apr 12)

Welcome to the forum. My husband was diagnosed last September. He is 46 and we have two kids 10 and 11. It will take time to digest, give yourself the time. Stay positive

by Romo (Apr 12)

The difficulty for the CML patient is the answer we want, the medical community
can’t give us. We want to know why we have this and can it be cured?
The doctor doesn’t know.
So we take our

by AlastairC (Apr 11)

For me and I think many others an important part of staying positive after diagnosis is to get to a point where you understand enough to manage your uncertainty and anxiety. There is a huge amount
Category: Uncategorised

Replies: 8

Last updated: 12 April 2018
Justine on 7 April 2018

Category: Blood tests

Replies: 7

Last updated: 12 April 2018

12 month PCR still no MMR
by Justine (Apr 12)

Thank you Cmljax!

by cmljax (Apr 10)

Justine:
Your trend is right and you could very easily reach MMR on your next test. This isn't a race, but reaching MMR and better does feel good. As long as you continue to trend down, you

by Justine (Apr 9)

Thank you, Romo, Alastair, Kat, and David. It is really reassuring. I look forward to some time in the future when I will be able to help people as you help me and so many others. Justine

by David Fitz (Apr 8)

Hi Justine,
You’re right that the guidelines say treatment change should be considered is greater than 0.1% at 12 months.
But you’re trend is downwards, and 0.2% is not really very far from 0.
Category: Blood tests

Replies: 7

Last updated: 12 April 2018
Josie on 10 April 2018

Category: Treating CML

Replies: 4

Last updated: 11 April 2018

CML Blast Crisis
by Tbrand (Apr 11)

I admit, I was a weird specimen. They were a bit perplexed. I could have jogged around the hospital if they let me. Most importantly I was told “ relax, you won’t die from this.” Two weeks into

by sandy craine (Apr 11)

Did you have your blast cell count at diagnosis. I would venture that you were in accelerated rather than blast phase - which is over 30% blast cells in peripheral blood or marrow- although some

by Tbrand (Apr 10)

I was diagnosed ac/blast in 12/2014. 94,000 WBC, 42 PCR, but spleen was normal as well as other blood work. Hospitalized for two days and back to work next day. Strange thing, WBC count dropped

by sandy craine (Apr 10)

Hi Josie,
Blast phase CML is a very difficult disease to treat... sometimes dasatinib is used, but this might not control the disease. High dose chemotherapy is used to get control of the blast cell
Category: Treating CML

Replies: 4

Last updated: 11 April 2018
KevinA on 5 April 2018

Category: Treating CML

Replies: 6

Last updated: 11 April 2018

Bcr Abl rising on 2nd TKI, am I headed for BMT
by KevinA (Apr 11)

Forgot to answer two questions:
1) I haven't tried major dietary changes (ie anti inflammatory), though I eat very well and follow many of the latest health trends (green smoothies, kale salads,

by KevinA (Apr 11)

Hi Scuba, Louise, Kirk:
Thanks for the replies and support, I enjoyed hearing about Scuba's journey and everyone's suggestions. I am seeing a CML specialist at Beth Israel in Boston.
The

by RC Kirk (Apr 7)

Welcome Kevin, Although I think you've been here longer than I have. Your #2 question got me thinking. I went back and checked my pathology reports from five years ago when I had

by LouiseS (Apr 6)

Hi Kevin

Congratulations on your wedding. I am glad you were well enough to enjoy it and your honeymoon. I am so sorry , however, that it has been such a tough year for you coping with the
Category: Treating CML

Replies: 6

Last updated: 11 April 2018
cmljax on 13 March 2018

Category: Blood tests

Replies: 22

Last updated: 31 December 2019

My first blip up
by scuba (Apr 10)

... or he can achieve what I did and take only 20 mg Sprycel!

by LouiseS (Apr 10)

Oops I missed that. Thank you. Now I have to tell my husband to take 16 tablets daily! Luckily they nearly finished.
I did place an order yesterday with Physician Naturals. Double checked and

by scuba (Apr 10)

Hi Louise,
Regarding Curcumin supply - keep in mind number of caplets per container and how many caplets make up one serving in order to get the correct mg dose. These labels can be tricky and

by LouiseS (Apr 10)

Hi there I am glad you feel free to share your concerns here and get comfort. I feel exactly the same way and can only imagine how much harder it was for patients in the past who didn't have access
Category: Blood tests

Replies: 22

Last updated: 31 December 2019
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