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David Fitz on 4 March 2020

Category: Treating CML

Replies: 0

Last updated: 4 March 2020

European Leukaemia Net 2020 Treatment Guidelines for CML
by David Fitz (Mar 4)

You may have spotted that ELN have released their long awaited update to their guidelines for treating CML. It’s quite a long document, but I’ve given it a read and here are some of the
Category: Treating CML

Replies: 0

Last updated: 4 March 2020
scuba on 25 February 2020

Category: Uncategorised

Replies: 26

Last updated: 3 March 2020

Virus' do not like the sun ....
by Karinne (Mar 3)

Actually my vitD level was 50 when I was diagnosed in 2013. I maintain my level at 70-80 now.

by scuba (Mar 3)

There was a recent Harvard medical research effort called the VITAL study: https://www.vitalstudy.org/
Results were 'inconclusive', but pointed to vitamin D having no impact on cancer rates

by Sunny (Mar 3)

That was some survey you did Scuba, and although as you say "non scientific", it certainly tells a tale, and the results are not to be scoffed at.
Conjecture? maybe, but a plausible one

by Sunny (Mar 3)
Category: Uncategorised

Replies: 26

Last updated: 3 March 2020
bendicco on 29 February 2020

Category: Blood tests

Replies: 7

Last updated: 1 March 2020

Blood Draw Kit
by bendicco (Mar 1)

Thanks David, that’s very helpful. Yes I would have the nurse do it! I’m assuming that Sloan will send it to me and include a return label , FedEx overnite I guess. I hope that the test

by David Fitz (Mar 1)

Once, yes. We needed to test my sister for HLA matching with me, but she lives abroad so they gave us a blood kit to give to someone there. We actually just did it ourselves because she and my step-

by bendicco (Mar 1)

Thanks David. Have you personal experience with the kit?

by David Fitz (Mar 1)

Various anticoagulants and preservatives are used and can be identified by the colour of the collection tube.

Purple: EDTA. Commonly used for FBC tests.
Blue: sodium citrate. Used for tests
Category: Blood tests

Replies: 7

Last updated: 1 March 2020
Harriet on 26 February 2019

Category: Other conditions

Replies: 12

Last updated: 29 February 2020

Diagnosed Nov 2017 cml ph
by bendicco (Feb 29)

Hi Harriet, Bendicco here. long time since I’ve been on this board. Saw your name and wondering how you are doing?

by bendicco (Mar 8)

Hi I sent you an email but maybe I got ur address wrong. I am
bendiccoj@gmail. com

by Harriet (Mar 7)

hi Bendicco please send me your private mail again i cannot find it.

by Harriet (Mar 7)

Hi Bendicco,

Yes I have been reading about this and wondering, I took curcumin some years back before CML my chiropractor swears by it,but to be honest I never really felt anything better or
Category: Other conditions

Replies: 12

Last updated: 29 February 2020
Nimbus2 on 24 February 2020

Category: Uncategorised

Replies: 11

Last updated: 28 February 2020

Imatinib side-effects
by yowandbm (Feb 28)

I also get these side effects on nilotinib. When Im cold 2 of my fingers will go completely numb and white, the blood vessels will constrict so that there is not blood at all (almost).
I can also

by Vijay Kumar Verma (Feb 27)

Thanks,i checked about raynaud's syndrome .

by Vijay Kumar Verma (Feb 27)

Its really difficult for me (psychologically too) when people around me enjoying while i have feeling of coldness(some time unbearable)

by David Fitz (Feb 27)

"Numb or cold toes and fingers" is a recognised uncommon side effect of imatinib (see package leaflet - https://www.medicines.org.uk/emc/files/pil.5566.pdf)
Category: Uncategorised

Replies: 11

Last updated: 28 February 2020
vmsantoso on 28 February 2020

Category: Other conditions

Replies: 0

Last updated: 28 February 2020

Tachycardia and leg edema
by vmsantoso (Feb 28)

Hi. My bf got diagnosed of CML last December, and been stopped medication for a while because Haemoglobin was too low.
He started medication again for about 8 days now and we’re still
Category: Other conditions

Replies: 0

Last updated: 28 February 2020
Sd on 23 February 2020

Category: Side effects

Replies: 2

Last updated: 27 February 2020

Thrush
by Sd (Feb 27)

John,
Thanks so much for your help and suggestions. It turns out that I had a thrush first, which was successfully treated with the nystatin. I now have stomatitis, probably due to imatinib. I am on

by johnw1001 (Feb 27)

The usual approach is to try a course of Canisten- clotrimazole normally as a cream available off prescription I believe;if it re- occurs then it might be useful to seek medical advice as to whether

by Sd (Feb 23)

This has probably been discussed, but I am wondering about experiences some of you have had with thrush....treatment, duration of symptoms, recurrence, ways to ease the pain.
Category: Side effects

Replies: 2

Last updated: 27 February 2020
renz on 27 February 2020

Category: Other conditions

Replies: 1

Last updated: 27 February 2020

Just signed up. Question about "dry tap" bone marrow tests.
by David Fitz (Feb 27)

Perhaps your doctor meant fibrosis, when talking about "scar tissue". You can read a bit more about that here:
http://www.mpnresearchfoundation.org/2014-Fibrosis-focus-area-two
To test for

by renz (Feb 27)

Hi, I just hit my 6 month treatment mark on SpryCel and doc had me repeat the bone marrow test. 6 months ago it came up as a "dry tap", and I think he was expecting it to be not dry by now
Category: Other conditions

Replies: 1

Last updated: 27 February 2020
Jason Graves on 26 February 2020

Category: Uncategorised

Replies: 2

Last updated: 27 February 2020

Bmt
by Jason Graves (Feb 27)

Typically they would stop the tki until her platelets went above 50, witch sometimes took 3 months. This is what we have fought now for a year and a half. I believe she’s tried 5 tki

by scuba (Feb 26)

What was the protocol process the doctor followed when her CBC dropped? Specifically what blood cell dropped? platelets? Neutrophils? other?
After the blood count dropped, what did the doctor do?

by Jason Graves (Feb 26)

It official we my wife will be getting a bmt. All the tki’s made her CBC drop into the danger zone and her bcr came back with a 15% increase in 3 months. Any advice?
Category: Uncategorised

Replies: 2

Last updated: 27 February 2020
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