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Parklife on 28 November 2015

Category: Uncategorised

Replies: 14

Last updated: 12 March 2020

Update and withdrawals?
by sandy craine (Mar 12)

Pam... why has your dad had his TKI therapy stopped? I am not aware that withdrawal syndrome included severe dizziness and blurred vision.
Sandy

by Pdl (Mar 9)

Thank you for your post Sandy. In any of your research did you happen to run across severe dizziness and blurred vision as a withdrawl symptom from imatinib? My Dad is 80 years old and stopped his

by wshi2001 (Dec 6)

hi, Darley,
I totally agree with you that some doctors have diagnostic challenge. Before I was diagnosed by an more experienced doctor, I first went to another doctor.

by darley (Dec 5)

Piece of advice... Don't put up with "it's just side effects then".
I hate diagnosis by guess work or presumption or the lazy and inept. Nearly lost my life because of
Category: Uncategorised

Replies: 14

Last updated: 12 March 2020
Tanya Cuffe on 9 March 2020

Category: Uncategorised

Replies: 5

Last updated: 10 March 2020

Still undetectable on 25 mgDasatinib!Scuba was right!
by scuba (Mar 10)

I am about to be TFR. I actually went without Sprycel this month awaiting a prescription refill. I had a PCR blood draw this morning. We'll see if I remain undetected after one month. I may just

by Tanya Cuffe (Mar 9)

Haven’t seen her for months,Scuba,due Corina virus.Shes Asian as are most of her patients.Pretty sure she would be most surprised (and pleased:) that lower dose Sprycel is working,as she had

by Tanya Cuffe (Mar 9)

Haven’t seen Doctor due shes Asian and has many Asian clients so has cancelled our last 2 appointments,due Corona Virus so she just sends me blood forms and then she emails me.Denise,I sent my

by Felix (Mar 9)

Hiya Tanya ,fabulous news do you feel any better with the lower dose ,bet your doctor wasn't happy being proved wrong .I am just waiting for my latest blood results .My Doc scared of reducing my
Category: Uncategorised

Replies: 5

Last updated: 10 March 2020
ShawnJ on 3 March 2020

Category: Side effects

Replies: 6

Last updated: 8 March 2020

Possible Heart Problems Sprycel
by jgionet (Mar 8)

Shawn,
I was diagnosed in January of 2016. I was 45. I am also an insulin dependent diabetic since I was 20. I also had high blood pressure controlled with multiple meds. I

by ShawnJ (Mar 4)

Tom,
Talked to the doctor today about dose reduction, denied again. He wants me to stick it out until I get a couple PCR results under my belt. He is still of the opinion that hitting the illness

by ThomasS (Mar 4)

Shawn, I felt terrible on 100mg. I had a hard time, but insisted and talked my Dr into dropping to 70mg then 50mg and so far for the past year everything is good with my counts... nothing has

by Aeje10327 (Mar 4)

I am on 100 mg of sprycel and at times I can feel my heart beat in random places. It has been most consistent in my lips. Super bizarre. I am not sure if what I'm experiencing is anything close to
Category: Side effects

Replies: 6

Last updated: 8 March 2020
sandy craine on 8 March 2020

Category: Uncategorised

Replies: 1

Last updated: 8 March 2020

2020 iCMLf Goldman Prize is awarded to Professor Jane Apperley
by David Fitz (Mar 8)

Such a fitting recipient.
Jane isn’t my doctor, but I have met her several times and she has given me fantastic advice. When thinking of starting a family, I asked her (at a conference

by sandy craine (Mar 8)

"Jane has been one of the leaders in CML research for many years. She has helped us not only develop better therapies for patients with CML, but with thorough, thoughtful and innovative
Category: Uncategorised

Replies: 1

Last updated: 8 March 2020
johnw1001 on 10 May 2019

Category: Side effects

Replies: 4

Last updated: 8 March 2020

Peripheral neuropathy associated with long term imatinib therapy
by Arlene (Mar 8)

Hi,
I was diagnosed just this last September, female, 25. My levels were very bad, 52%. I took hydrourea for the first two weeks until they figured out I had CML. They then prescribed me Imatinib

by chrisbishop55 (Jan 15)

I have been diagnosed with peripheral neuropathy in my feet and legs after having one very painful ankle, swollen and tight skin. It was thought at first that I had damaged a ligament or

by Olivia (Jan 12)

I found this very interesting, although the symptoms described aren't exactly the same as mine. I have been on imatinib for over 10 years now, and my PCR results are good, so I don't

by ShawnJ (Jan 10)

John,
This is something that I am curious about because I have been experiencing symptoms that could be considered Peripheral Neuropathy but I have not been diagnosed. I am 34, I have been on
Category: Side effects

Replies: 4

Last updated: 8 March 2020
David Fitz on 26 February 2020

Category: Uncategorised

Replies: 2

Last updated: 5 March 2020

Welcoming Richard Willoughby as a new Trustee of CML Support
by Richard42 (Mar 5)

Belated thanks to David and all for the welcome as a trustee. I am looking forward to helping out with some of the behind the scenes activities, as David puts it.
Best
Richard

by snowman 35 (Feb 27)

Welcome Richard!

by snowman 35 (Feb 27)

Welcome Richard!

by David Fitz (Feb 26)

We have invited Richard Willoughby (Richard42) to become a new Trustee of CML Support UK, and he has kindly accepted.
Much of the work we do at CML Support is “behind the scenes”
Category: Uncategorised

Replies: 2

Last updated: 5 March 2020
izhamredza on 2 March 2020

Category: Side effects

Replies: 4

Last updated: 5 March 2020

Nilotinib Side Effects
by izhamredza (Mar 5)

As for me, only my hair and my body hair was affected meanwhile my eyebrows stays the same. Anyway, thank you for your response.

by izhamredza (Mar 3)

Yes my PCR is below 0.1 now. I’ll talk to my doctor on reducing the dosage. Thanks for your response!

by Dustylloyd (Mar 2)

Hi Izham I’ve been on 800mg per day for nearly 5 years and the only change I’ve noticed (thankfully) appearance wise iv noticed is thinning of eyebrows, but my wife has commented my hair

by ColoradoGuy (Mar 2)

First I think that 800mg daily is very high dose for Nilotinib. I'm not sure that I have heard of somebody taking that high of a dose. I am on on 600mg and can't wait when God
Category: Side effects

Replies: 4

Last updated: 5 March 2020
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