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David Fitz on 18 December 2019

Category: Uncategorised

Replies: 3

Last updated: 26 February 2020

New site feature: Direct Messaging
by Vikram (Feb 26)

I edit my post but no edit....

by Tater1 (Dec 24)

Thank you. This is an awesome feature....

by alexmcpee (Dec 21)

Awesome stuff David. I am sure it’s going to be a very helpful addition.
Alex

by David Fitz (Dec 18)

Private / Direct Messaging has been in the works for a while and has been a feature often requested. I’m pleased to say that today we have released this new feature in “beta” form
Category: Uncategorised

Replies: 3

Last updated: 26 February 2020
sandy craine on 14 March 2012

Category: Uncategorised

Replies: 7

Last updated: 25 February 2020

Acid Reflux/Heartburn
by sandy craine (Feb 25)

Hi Eva,
I still take ACV (with mother) whenever I have any signs of indigestion/reflux etc. I also find my digestion suffers adversely from eating processed foods especially those made from white

by EvaH (Feb 24)

Ive been getting a lot of reflux lately - I also have bronchitis, might it have to do with the coughing?
Didnt have it bad before but I wake up in the middle of the might about to throw up. I've

by Wendy Turner (Feb 23)

Hi Sandy

I've just read your post with interest as I have begun to get indigestion problems after being on Imatinib for 4 months. I tried Omeprazol for 5 days, it made no difference

by teddyb (Apr 15)

Thanks for the tip Sandy, will give it a try for my indigestion when eating fatty or spicy food, got nothing to lose :)
Teddy
Category: Uncategorised

Replies: 7

Last updated: 25 February 2020
alexmcpee on 20 February 2020

Category: Uncategorised

Replies: 10

Last updated: 25 February 2020

Pesky eye floaters
by alexmcpee (Feb 25)

Many thanks Eva
I am going to mention it to my consultant in May when I next see him to see what he says/recommends. Yes I had a wbc of 330 at diagnosis and I’ve had floaters since this time,

by EvaH (Feb 24)

Probably harmless as others have said - however, may I ask if you remember what white blood count you were diagnosed with?
I had some issues with neovessels but this is a very rare side effect of

by snowman 35 (Feb 20)

Your welcome my friend!

by snowman 35 (Feb 20)

Maybe that 's why I notice them more David! Nice thought!
Category: Uncategorised

Replies: 10

Last updated: 25 February 2020
ashbryant on 23 February 2020

Category: Uncategorised

Replies: 4

Last updated: 24 February 2020

Advice. Questions.
by scuba (Feb 24)

CML is a rare disease - worldwide about 0.7 - 1.0 person in 100,000. In the U.S. last year about 8500 new cases were diagnosed.
The odds you have CML from your symptoms alone are low. Very low.

by Nimbus2 (Feb 24)

I well understand the Googling mentality but it can lead to some very wrong conclusions. Nonetheless, I would keep a check for any increase in your white blood count and neutrophils. I did self

by ashbryant (Feb 23)

Thank you for your response! I do have an enlarged spleen and an enlarged liver but my white blood count has been fine. The last time my neutrophil was checked was October and it was right on the

by Nimbus2 (Feb 23)

Hello Ashbryant. I did some searching on your symptoms and I can well see how you considered CML to be one of the possibilities. Sooner or later with CML you would be seeing a rise in the white
Category: Uncategorised

Replies: 4

Last updated: 24 February 2020
givethanks on 23 February 2020

Category: Uncategorised

Replies: 4

Last updated: 24 February 2020

Does sprycel dose need adjusting
by givethanks (Feb 24)

I don’t know her blast cell count at time of diagnosis. I do know that her platelets count was 1,000 but all other labs were in normal range. Thank you so much for all your

by scuba (Feb 24)

What were her initial blood counts at diagnosis? blast cell count, in particular?
(Your mom should have her vitamin D level tested and if low, she should supplement with D3 to raise it to be above

by givethanks (Feb 23)

Thank you for your response. I think the 140 dose was prescribed because she wasn’t in the chronic phase but rather accelerated phase. Is the 50mg dose for chronic phase? When her

by scuba (Feb 23)

You are correct in being concerned. Sprycel is a potent TKI and can often times result in severe myelosuppression (low blood counts). You need to be vigilant and watch blood counts closely - at
Category: Uncategorised

Replies: 4

Last updated: 24 February 2020
Aeje10327 on 21 December 2019

Category: Uncategorised

Replies: 8

Last updated: 23 February 2020

Pcr question
by Batman0424 (Feb 23)

Good to know. My wife is on 50 right now due to side effects and Dr Mauro is monitoring.

by Aeje10327 (Feb 23)

Regarding the 50 mg dose? He said they are using 100 right now and lower if needed to manage side effects but that there isnt enough data yet to support starting at 50.

by Batman0424 (Feb 23)

Have you met with Dr Mauro yet? Wondering how it went and what his opinion was. My wife is also now seeing Dr Mauro (her first appointment was also in Feb).

by Aeje10327 (Dec 21)

Thank you so much for the information. I have scheduled an appointment with Dr. Mauro for February to see what his thoughts are. Wish he could see me sooner.
Category: Uncategorised

Replies: 8

Last updated: 23 February 2020
Karthikeyan on 22 February 2020

Category: Children & young people

Replies: 0

Last updated: 22 February 2020

Wrong pcr lab reports
by Karthikeyan (Feb 22)

Hello, second time i got erroneous pcr report.did anybody have this experience.
Category: Children & young people

Replies: 0

Last updated: 22 February 2020
Alaina on 12 February 2020

Category: Uncategorised

Replies: 6

Last updated: 21 February 2020

Tasigna + Exercise
by Alaina (Feb 21)

I decided to see a cardiologist for the irregular beat thing. He said I have mitral valve prolapse with some regurg. Nothing I didn't already know. He offered a prescription for a beta blocker but

by Alaina (Feb 21)

I started off drinking 3 Liters of water per day 4 years ago. After reflecting, I believe I'm now only drinking 1.5 Liters per day. I didn't have these symptoms when I first began Tasigna. Thought

by Alaina (Feb 21)

Ok, thank you snowman. I will be more mindful of my water intake.

by cmljax (Feb 16)

I have been on Tasigna since October 2016. I have maintained and even increased my fitness regimen even when the fatigue was at its worst. I do 2 miles a day fast walking (4 - 4.5 mph)
Category: Uncategorised

Replies: 6

Last updated: 21 February 2020
scuba on 13 February 2020

Category: Uncategorised

Replies: 13

Last updated: 20 February 2020

Mounting evidence dasatinib discontinuation is safe
by Chuckster (Feb 20)

Scuba:
Could it be "Something" is different in the actual composition of the BONE MARROW that is having a pronounced effect on
who can be DRUG FREE/ CML FREE

by VioS (Feb 20)

Thank you Chuckster, it seems that your WBC was not affected by BCR-ABL growth to 1,3.

by Chuckster (Feb 20)

Here are my Bcr/Abl1 and WBC numbers from May 2019 to Jan.30th 2020

MAY15th-2019 : Bcr/Abl1: NOT DETECTED and WBC: 7,400.
July 19th-2019: Bcr/Abl1: 1

by VioS (Feb 19)

Hey Chuckster, did you WBC increase when your bcr-abl measured above 1%??
i am asking because i cut my tasigna doze in half for a month an my WBC went up from 9,5 (my normal level on tasigna) to 10,
Category: Uncategorised

Replies: 13

Last updated: 20 February 2020
Beaners on 15 February 2020

Category: Side effects

Replies: 2

Last updated: 18 February 2020

joint pain
by Philiptibbs (Feb 18)

I'm on Sprycel and yes it causes joint pain . I take a multi vitamin, vitamin D3, potassium, Branch Chain Amino Acids, Magnesium, Calcium and Taurine for muscle cramps and my Hematologist

by snowman 35 (Feb 16)

Hi Beaners!

The first thing I can suggest you is to take curcumin and magnisium. Also check your vitamin D levels and if it is under 50 take a vitamin D3 supplament until you go around 70!

by Beaners (Feb 15)

I new to this so here a quick background.
May 2016 diagnosed with breast cancer - surgery and radiation - been cancer free 3 years Was place on Tamoxifen.
August 2019 had a total abdominal
Category: Side effects

Replies: 2

Last updated: 18 February 2020
Nshah on 16 February 2020

Category: Treating CML

Replies: 6

Last updated: 18 February 2020

Missed imatinib doses
by Nshah (Feb 18)

Thanks dear 😊

by Philiptibbs (Feb 18)

Your fine. I miss a dose of my Sprycel once a week when I have some Beers on the weekend and my levels are 0.0312 so you should be fine .

by Nshah (Feb 18)

Wow that’s great, do you still take medicine

by dftitus (Feb 18)

My CML was caught very early. My first PCR was 0.1264. My second PCR (3 months later), showed a 3-log reduction. It was undetectable at 6 months and has stayed that way ever since.
Category: Treating CML

Replies: 6

Last updated: 18 February 2020
ciprians on 20 October 2017

Category: Side effects

Replies: 6

Last updated: 18 February 2020

Nigh sweats
by Philiptibbs (Feb 18)

I feel you. I have night sweats all the time from Sprycel its a side effect. I wear tshirts to bed and a towel on my pillow. My hematologist at Karmanos is a joke. I told him of all the pain I was

by Eck (Feb 18)

I was diagnosed with CML May 2018, the night sweats and some other symptoms returned 5 weeks ago i've been in touch with my GP and the haematology department, the latter told me to see my GP my

by ciprians (Mar 27)

Hello SorubhMaggo,

How did the sweats come up? Is everything all right with you now? Since the previous post, I've experienced sweats like this but always they went away.

by SorubhMaggo (Nov 19)

It was last year December 2017 when I was diagnosed with CML with quite similar symptoms as Ciprians. Along with 2 months of history of night sweat which gradually increased, I went for a
Category: Side effects

Replies: 6

Last updated: 18 February 2020
hannibellemo on 17 February 2020

Category: Treating CML

Replies: 2

Last updated: 18 February 2020

6 months of alternate day treatment with 20 mg. Sprycel
by Philiptibbs (Feb 18)

I'm on 70mg Sprycel every day and I was just at 0.0312 and my Doc said if the next test is same or lower I can drop to 50mg. Thing is I have inflamation in all my joints. My muscles ache and my

by kat73 (Feb 18)

My thoughts on the inflammatory tissue result: I can't help but wonder if this doesn't fall into the category of weird stuff that TKI's do that screw up tests and things that make

by hannibellemo (Feb 17)

I just got the results from my recent (2/13/2020) PCR. In November, after 3 months of alternate day therapy in which my results went from CMR (on 20 mg every day) to 0.0032, my most recent result is
Category: Treating CML

Replies: 2

Last updated: 18 February 2020
ThomasS on 6 February 2020

Category: Uncategorised

Replies: 13

Last updated: 18 February 2020

Retirement-Sprycel
by Philiptibbs (Feb 18)

Yes I have the Sprycel Co Pay card. I pay nothing per month. It would be $50.00 a month but the copay card makes it so I pay nothing and they send it right to my house. My wife works for McLaren

by ThomasS (Feb 18)

Great... thanks for the info. I have an appointment with our HR dept. also. I am also going to contact the SHIP office here in Georgia and talk with them.

Thank you,

Tom

by hannibellemo (Feb 18)

Please contact the SHIP office in your state for Medicare assistance. We are trained volunteers who can help you navigate the muddy waters of Medicare. Medicare Part D is NOT free (as stated in a

by hannibellemo (Feb 18)
Category: Uncategorised

Replies: 13

Last updated: 18 February 2020
thomas.c on 17 February 2020

Category: Side effects

Replies: 2

Last updated: 17 February 2020

strange temeperature
by hannibellemo (Feb 17)

Thomas, I also experienced the hot face syndrome (my term) with Sprycel but it went away after several months. I also experienced the same sensation in my upper arms and thighs. My tolerance to heat

by labros (Feb 17)

Hello Thomas,
I found your post really interesting, since I am on 100mg of dasatinib, since been diagnosed last June and from the 1st month I am experiencing strange temperature on my ears as well.

by thomas.c (Feb 17)

Hi Everyone!
I'm experiencing some strange symptoms, and i was hoping some of you may have an idea what might be going on. I was diagnosed about 2.5 years ago with CML, been taking 100mg
Category: Side effects

Replies: 2

Last updated: 17 February 2020
chrissie on 16 February 2020

Category: Uncategorised

Replies: 3

Last updated: 17 February 2020

Radiotherapy and CML??
by chrissie (Feb 17)

Many thanks, Guys. Yes, David, it's whether it's safe for me.
My mind is at rest now,
Best,
Chrissie

by johnw1001 (Feb 16)

Hi Chrissie,
I am not an oncologist/radiation specialist but as well as being a CML veteran(14 years) three months ago I had treatment for early stage prostate cancer in the form of targeted

by David Fitz (Feb 16)

Hi Chrissie,
Are you asking if it’s safe for her, or for you? I presume you ... and if so, I can’t really see any potential problem at all. If you meant the other way around, I don

by chrissie (Feb 16)

I have an elderly neighbour who doesn't drive. We live 10 miles from the hospital where she is about to start 3 weeks of daily radiotherapy for breast cancer. Luckily she has avoided chemo
Category: Uncategorised

Replies: 3

Last updated: 17 February 2020
Batman0424 on 4 February 2020

Category: Treating CML

Replies: 8

Last updated: 16 February 2020

Confused - treatment change
by Batman0424 (Feb 16)

So we saw (and are switching to) Dr Mauro last week and he agreed that my wife should continue on Dasatinib @ 50mg. We will do another PCR test in 6 weeks, which will be 2 continuous months on

by Batman0424 (Feb 4)

Thank you Sandy for clarifying / confirming my assessment.

I do not know why a PCR test was ordered when my wife was only treated for a total of 24 days spread over 2 months

by sandy craine (Feb 4)

Hi,
If I understand your situation and concerns correctly, I suggest you take a look at our PCR booklet which may help you when trying to understand your wife's test results.
At diagnosis

by Batman0424 (Feb 4)

Thank you, Scuba - your response was very helpful and reassuring.
Currently, my wife seems to be tolerating 50mg of dasatinib relatively well. Her panels look great at the moment on 50;
Category: Treating CML

Replies: 8

Last updated: 16 February 2020
Dustylloyd on 15 February 2020

Category: Uncategorised

Replies: 3

Last updated: 16 February 2020

Support from employer
by Dustylloyd (Feb 16)

Thanks David and John for your replies, as always very helpful, both raising points about the sometimes negative support people with cancer conditions face, I’m in the Uk, but like you say

by johnw1001 (Feb 16)

Hi Pete,
Assuming you are in UK The Equality Act 2010 states that you are disabled if you have a physical or mental impairment that has a substantial and long term negative effect on your

by David Fitz (Feb 16)

Hi Pete -
My employer have been great. But not all are.
Where do you live? Here in the UK the Equality Act mandates that employers make “reasonable accommodations” for people with

by Dustylloyd (Feb 15)

This is not a “ it’s not fair “ plea and I have raised this question before but I just wonder what is classed as normal support from your employer for people with Cml, in the 5
Category: Uncategorised

Replies: 3

Last updated: 16 February 2020
Mosalem2093 on 15 February 2020

Category: Blood tests

Replies: 2

Last updated: 16 February 2020

BCR_ABL test and Sprycel
by Mosalem2093 (Feb 16)

Thanks a lot David. ..
I think he was at 36% at the last Tasigna results which let them decide to switch over to Sprycel..I hope that by time he can get to the good levels. He has 100mg Sprycel

by David Fitz (Feb 16)

Hi there, and welcome.
18% after 2 months is pretty good. The “optimal” result at 3 months is 10% - and if at 18% at 2 months I would expect him to achieve that optimal result at 3

by Mosalem2093 (Feb 15)

Hi all,
I am new to this forum. My dad has CML and they switched him from Tasigna to Sprycel as doctor claims it's not working given the subject test recent results. He suffers from side effects
Category: Blood tests

Replies: 2

Last updated: 16 February 2020
Chuckster on 11 November 2019

Category: Blood tests

Replies: 12

Last updated: 16 February 2020

Latest Blood Test Results BCR/ABL1 .
by Mosalem2093 (Feb 16)

Hi Scuba,
Do you have a link to these ASH papers that Sprycel 20 mg is effective as my dad has similar case and would like to share it with his doctor,

by Chuckster (Feb 15)

Thanks Scuba!
I am so glad my oncologist agreed with me to ride this past six months out by staying with the 20 MG Sprycel dosage than trying a different Med.
20MG, so far, seems to be

by scuba (Feb 15)

Cool. You know I am not surprised!
(Kat - I believe there were several papers at ASH on low dose sprycel's effectiveness (20 mg). I'll have to find them again)

by Chuckster (Feb 14)

THANKS!
Category: Blood tests

Replies: 12

Last updated: 16 February 2020