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David Fitz on 18 December 2019

Category: Uncategorised

Replies: 2

Last updated: 24 December 2019

PinnedNew site feature: Direct Messaging
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: 2

Last updated: 24 December 2019
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
teddyb on 3 February 2020

Category: Treating CML

Replies: 7

Last updated: 18 February 2020

Going from Imatinib to Sprycel
by Philiptibbs (Feb 18)

I was on imatinib and was stuck at 5% and they put me on Sprycel because Imatinib gave me bad bone pain and now with Sprycel I have less bone pain and I went from 5% to 0.0312 in 3 months so I'm

by teddyb (Feb 17)

Last results PCRU (last test on imatinib), testing again with Sprycel in 4 weeks time. Bloodworks after 10 days of Sprycel were fine, even my kidney values were better than they usually are. Now if

by teddyb (Feb 8)

Thank you for replying kat and scuba.
My goal is to reduce down to 20mg or at least split 50mg tablets in half.
As for side effects on 50mg they are absolutely there, fatigued, but my stomach is (

by kat73 (Feb 4)

I take my Sprycel in the AM, whenever I get around to doing the getting dressed routine, regardless of food intake. As to red wine, I just can't do it anymore. White is a little better,
Category: Treating CML

Replies: 7

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
VickyK. on 22 February 2019

Category: Side effects

Replies: 8

Last updated: 16 February 2020

Tasigna hair loss
by cmljax (Feb 16)

When I was on full dose Tasigna (600 mg/day), my hair stopped growing but I didn't have noticeable loss. I am now on 1/4 full dose or 150 mg/day and my hair grows almost as fast as it used

by koralia.pappi (Feb 16)

Hi Vicky,
I'm also on Tasigna since June, and during summer I also had increased hair loss. My hair was quite long so I tried cutting it shorter to give it some boost, an it worked. Or it was just

by Felix (Feb 15)

Hi,I have had extremely dry frizzy hair it has been driving me mad ,I have tried everything and nothing has made any difference.Someone recommended Philip Kingsley products to me so I bought

by Beaners (Feb 15)

Hi Vicky,

I was just diagnosed with CML and the first thing I did was add prenatal vitamins to my shampoo.
Grind them up really fine and mix with shampoo. It has helped me.
Beaners
Category: Side effects

Replies: 8

Last updated: 16 February 2020
Alaina on 12 February 2020

Category: Uncategorised

Replies: 3

Last updated: 16 February 2020

Tasigna + Exercise
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)

by alexmcpee (Feb 13)

Hi Alaina,
I have been on Tasigna for nearly 2 years. The last 4-5 months I’ve been going to the gym 2-3 times a week doing weight training about 45mins and 20 mins of cardio at each session.

by snowman 35 (Feb 12)

Hi Alaina!

I take sprycel. I am in medication almast 4 years and I do crossfit. At almast all the workouts my hartrate is between 140-185 per min. What I do is drinking at least 2-2.5 liters

by Alaina (Feb 12)

Hello everyone. I have been on Tasigna for just shy of 4 years. I have noticed that it has become more difficult to exercise the longer I am on the medication, specifically regarding dehydration. Is
Category: Uncategorised

Replies: 3

Last updated: 16 February 2020
scuba on 13 February 2020

Category: Uncategorised

Replies: 6

Last updated: 16 February 2020

Mounting evidence dasatinib discontinuation is safe
by Vikram (Feb 16)

I know TFR / without treatment chance cml comeback....
50 % rate TFR 3-4 year UNDETACTABLE..... (50% UNDETACTABLE without tki..)
Any chance of cure? (few CMLer cure??)

Any data available???

by scuba (Feb 14)

Hi Kat - I can appreciate your frustration .... You apparently have very active CML stem cells that hide away and wait for a shot to get back in business once treatment stops. The daughter cells are

by kat73 (Feb 14)

We seem to know two things about TFR: About half of DMR CMLers can sustain TFR for an as-yet undetermined time, and that almost all "failures" are able to return to TKIs and regain

by scuba (Feb 13)

Just continuing added evidence that patients who reach deep molecular remission ("undetected" for 3 years) have a greater than 50% chance of treatment free remission.
50-50 are good odds
Category: Uncategorised

Replies: 6

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
snowman 35 on 11 February 2020

Category: Other conditions

Replies: 6

Last updated: 13 February 2020

Stressed again... Scuba, David or anyone please help...
by snowman 35 (Feb 13)

Thanks for your quick response Scuba! I will make it a habit!!

by scuba (Feb 13)

"My concern is if I take sprycel without water(because I don't have that time) and I lelp it go down with some food affects the absorption or the effectiveness of the drug.."
No. Makes

by snowman 35 (Feb 13)

I understand that Scuba and I drink lots of water during the day... Maybe it is not the first thing I do in the morning(when I take sprycel) but I drink at least 2-2.5 liters per day during winter

by scuba (Feb 12)

A full glass of water is always suggested to help get the little pill where it needs to go - but once in the stomach, stomach acids take care of the rest and dissolve the drug for near 100%
Category: Other conditions

Replies: 6

Last updated: 13 February 2020
scuba on 8 February 2020

Category: Uncategorised

Replies: 7

Last updated: 13 February 2020

Dasatinib not just for CML?
by scuba (Feb 13)

Additional recent publications on Quercetin method of action:
https://www.ncbi.nlm.nih.gov/pubmed/32007919

by scuba (Feb 12)

Dasatinib almost certainly saved my life following CML diagnosis. Interesting that it may actually help extend it. I have always been keen on stopping therapy because of dasatnib's toxicity. But

by Nimbus2 (Feb 12)

Thank you, Scuba.
Google will translate the article below from German to English.
Anti-ageing: On the way to the Fountain of Youth?
https://www.pharmazeutische-zeitung.de/ausgabe-072018/

by Sunny (Feb 11)

Thanks Sandy, I found the comprehensive list of Natural sources of Quercetin particularly helpful. Many of the items on the list are already incorporated into our daily diet, but after reading
Category: Uncategorised

Replies: 7

Last updated: 13 February 2020
stefanolucas on 13 February 2020

Category: Treating CML

Replies: 2

Last updated: 13 February 2020

Question , please advice
by stefanolucas (Feb 13)

Yes , at the beginning she had began her treatment with Imatinib but she lowed to 20% not in a fast way how it shoulded be doc says , after she reached 20% from this point Imatinib didn’

by ColoradoGuy (Feb 13)

A little background regarding the resistance to Imatinib would be helpful. Did her numbers climb in two consecutive tests significantly? Was mutation testing performed?
I think that the

by stefanolucas (Feb 13)

Hello ,
As a background story which are in my other threads , about my sister ( 21yrs) who was diagnosed in June,2018 with CML and had a resistance to imatinib after we switched to
Category: Treating CML

Replies: 2

Last updated: 13 February 2020
Rayjee33 on 5 February 2020

Category: Uncategorised

Replies: 8

Last updated: 12 February 2020

Treatment in Russia
by Nimbus2 (Feb 12)

By coincidence, I am presently reading Cancer Ward by Aleksandr Solzhenitsyn. That book examines cancer treatment in the USSR in 1955.

by Rayjee33 (Feb 12)

Thanks a lot! But I'm not looking for help, I just talked about how things are with medicines in Russia. Thank you all for your concern!

by sandy craine (Feb 10)

Hi and welcome,
It might be more helpful for you to contact one or both of the following patient organisations based in Russia. I hope they can give you some advice.
The national association of

by Nimbus2 (Feb 9)

Yes, there is one awkward mutation that would probably require the use of ponatinib. The mutation name, which is a set of numbers and letters, may not automatically translate into Russian. From your
Category: Uncategorised

Replies: 8

Last updated: 12 February 2020