TFR in chronic myeloid leukemia: Lights and shadows. In several studies, NK cell numbers or functional subsets of NK cells were shown to be higher in patients who maintain TFR

Discontinuation of Tyrosine Kinase Inhibitors in Patients with Chronic Myeloid Leukemia: a Review of the Biological Factors Associated with Treatment-Free Remission

Top Vitamin D Research Papers- 2021

63rd ASH Annual Meeting - CMLAdNet Conference Report

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David Fitz on 12 March 2022

Category: Uncategorised

Replies: 2

Last updated: 10 April 2022

Pinned“My CML” phone app now available
by Wendy Turner (Apr 10)

this will be super useful for all of us I think. thanks to everyone involved in creating this app.

by MartinZA (Mar 28)

Hi David
This is brilliant and looks super-useful! Thank you so very much for all the research - I remember answering the survey questions a while ago.
I'm going to download it immediately and look

by David Fitz (Mar 12)

Following from what started as a masters students questionnaire about managing CML, to the thought that a phone app could help, with further research into what patients needed, and help from this
Category: Uncategorised

Replies: 2

Last updated: 10 April 2022
David Fitz on 17 December 2021

Category: Uncategorised

Replies: 0

Last updated: 14 January 2022

PinnedHammersmith Hospital: Ask the CML Expert
by David Fitz (Dec 17)

Details of a fantastic new service Hammersmith Hospital in London are offering to all CML patients and doctors. A chance to engage with experts.
Category: Uncategorised

Replies: 0

Last updated: 14 January 2022
EvaH on 9 May 2022

Category: Blood tests

Replies: 6

Last updated: 15 May 2022

Back in TFR - happy days!
by Sav_5 (May 15)

Great news EvaH!!

by Sherley (May 10)

That’s great news!

by Sunny (May 9)

Lovely news EvaH. With so much bad news nowadays, nice to hear good news for a change.
All the best,
pigeon.

by Buzzm1 (May 9)

Happy for you Eva!
Buzz
Category: Blood tests

Replies: 6

Last updated: 15 May 2022
MJP on 12 May 2022

Category: Other conditions

Replies: 1

Last updated: 15 May 2022

TKI Withdrawal Syndrome
by David Fitz (May 15)

That sounds really difficult. I spoke to a CML specialist in the UK about this at a conference, and he said that he only ever had one patient who went back on their TKI to alleviate the withdrawal

by MJP (May 12)

I ceased taking Sprycel on December 6, 2021 - giving treatment free remission a shot. I had taken it since first diagnosed and treated - May, 2018. I started on 100mg and moved to 70
Category: Other conditions

Replies: 1

Last updated: 15 May 2022
David Fitz on 15 May 2022

Category: Uncategorised

Replies: 0

Last updated: 15 May 2022

“My CML” app - feedback needed
by David Fitz (May 15)

Your help needed!
Hopefully lots of you are now using the “My CML” app, and have found it useful. We are now looking to get some formal and structured patient feedback, which will help
Category: Uncategorised

Replies: 0

Last updated: 15 May 2022
sb22 on 10 May 2022

Category: Uncategorised

Replies: 7

Last updated: 15 May 2022

bosutinib
by Diane CW (May 15)

I am so sorry to hear about your strokes and I hope you have recovered well from them. I was also on Nilotinib to begin with but had to stop because my platelet count was continually very low.

by sb22 (May 15)

Been taking bosutinib since December I'm back in MMR

My bcr=abl is good

I was not on any meds from March till December last year

by sb22 (May 15)

I'd sat my hair is thinning near my fringe

Yes I'm careful what I eat

I was on 19 yrs ago at first gleevec

Then dastanib then nilotinib

Nilotinib was great it worked MMR but

by Diane CW (May 15)

Just out of interest have you noticed much hair thinning too?
Category: Uncategorised

Replies: 7

Last updated: 15 May 2022
sb22 on 1 March 2021

Category: Side effects

Replies: 13

Last updated: 15 May 2022

stroke and nilotinib
by ColoradoGuy (May 15)

Did you have any symptoms? I had a couple of episodes last year of what I would describe as sudden vertigo. It did not last but a few seconds but I wonder what caused it. I was dehydrated and

by ColoradoGuy (May 15)

Did you have any symptoms? I had a couple of episodes last year of what I would describe as sudden vertigo. It did not last but a few seconds but I wonder what caused it. I was dehydrated and

by sb22 (May 14)

I am 19 years living with CML on my 4th set of medication

The tki that's in nilotinib can cause strokes my oncologist didn't flag this up even after the 2nd stroke I was on the meds for

by Sherley (May 14)

Wow. That’s really scary. My doctor last year wanted to put me on that but I refused. I’m currently on sprycel. But could be possibly resistant. I hope that
Category: Side effects

Replies: 13

Last updated: 15 May 2022
MJP on 12 May 2022

Category: Other conditions

Replies: 0

Last updated: 12 May 2022

TKI Withdrawal Syndrome
by MJP (May 12)

I ceased taking Sprycel on December 6, 2021 - giving treatment free remission a shot. I had taken it since first diagnosed and treated - May, 2018. I started on 100mg and moved to 70
Category: Other conditions

Replies: 0

Last updated: 12 May 2022
Rick B on 27 April 2022

Category: Uncategorised

Replies: 7

Last updated: 12 May 2022

My Situation after Flunking TFR
by Richard42 (May 12)

This paper is a good summary of the various TFR studies and their outcomes
https://www.haematologica.org/article/view/haematol.2019.242891
Depth and duration of response seem to be factors (newer

by scuba (May 12)

Allistair,
Consider changing drugs (e.g. dasatinib low dose). There is evidence that rotating through TKI's helps induce deep remission which may be durable leading to successful TFR.

https://

by AlastairC (May 11)

Hi Rick
I followed the Destiny Protocol after around 11 years om 400mg imatinib. As with Richard I did a year on 200mg and remained at 0.000%. I then stopped but 17 months later after a slow rise

by Rick B (May 11)

Richard,
Thank yiu for replying to my post and story. I too questioned my hematologist about the length of time I had been on the medicine and time at "undetectable." I am wanting to
Category: Uncategorised

Replies: 7

Last updated: 12 May 2022
johnw1001 on 5 May 2022

Category: Blood tests

Replies: 7

Last updated: 9 May 2022

Lymphopenia
by scuba (May 9)

Conversion factor: 1 ng/ml = 2.5 nmol/L
60 - 80 ng/ml = 150 nmol/l - 200 nmol/l

by sandy craine (May 9)

Just to remind you that in the UK (and other EU countries) D3 is measured in nmol/L rather than ng/ml so you would need to convert your test result if you are following US based research/

by johnw1001 (May 6)

Chrissie,
I would not expect a GP to have in depth knowledge of how Vit D impacts on the immune system and nor would I expect them to understand the mechanisms of CML and how tkis themselves may as

by chrissie (May 6)

A question - why are my GP and haem both happy with my current Vit D levels at 53. I have been taking 1400IUs daily for a couple of years after my levels were " low". I shall continue on
Category: Blood tests

Replies: 7

Last updated: 9 May 2022
Helen on 7 May 2022

Category: Uncategorised

Replies: 1

Last updated: 9 May 2022

Covid Treatments for CML Patients
by sandy craine (May 9)

Hi Helen,
I think that after 3 or 4 days of symptomatic Cvid infection you should be able to assess whether it is going to be self-manageable or a more serious infection. I recently had Covid (

by Helen (May 7)

Have just tested positive for Covid Saturday morning and NHS have offered me an intravenous antiviral treatment to reduce risk of serious illness. Apparently the tablet antiviral can cause
Category: Uncategorised

Replies: 1

Last updated: 9 May 2022
AlastairC on 28 February 2022

Category: Drug-drug interactions

Replies: 15

Last updated: 8 May 2022

Imatinib/Anticoagulants interaction when having surgery
by Vikram (May 8)

Thanks to reply...

by AlastairC (May 7)

I asked the doctor if he wanted me to be awake during the procedure. He said absolutely it was better to be awake.
1 Risk of blood clots and deep vein thrombosis reduced by 50%, and
2 Recovery time

by Vikram (May 7)

Thanks to reply..
What your doctor says about General anesthesia..
My doctor : if local anesthesia work avoid general anesthesia...

by Vikram (May 7)

Thanks to reply..
What your doctor says about General anesthesia..
My doctor : if local anesthesia work avoid general anesthesia...
Category: Drug-drug interactions

Replies: 15

Last updated: 8 May 2022
Buzzm1 on 5 May 2022

Category: Uncategorised

Replies: 2

Last updated: 7 May 2022

Tasigna/Nilotinib U.S. patent expiration
by Buzzm1 (May 7)

In 2001, Gleevec was introduced into the U.S. market at a price of $26,000/year. By February, 2016 when the Imatinib generic was introduced, Gleevec was over $140,000/year.
In a confidential

by johnw1001 (May 7)

When the Glivec patent expired Novartis created their own generic of imatinib under the Sandoz label-Sandoz being the pharma company some decades ago that merged with Ceba-Geigy to form

by Buzzm1 (May 5)

Finally received a response from Novartis. Looked but couldn't find the original thread on the issue.
Dear Mr xxxxxx,
Thank you for your interest in Novartis Pharmaceuticals Corporation.
Category: Uncategorised

Replies: 2

Last updated: 7 May 2022
Sherley on 6 May 2022

Category: Children & young people

Replies: 2

Last updated: 6 May 2022

Could I be resistant to sprycel
by Sherley (May 6)

Thank you for replying. That makes sense to wait another 3 months in case of error. Also I’ve had three doctors in the past year Bc they moved and one of them from last year

by ColoradoGuy (May 6)

First I would say that it seems incredible that they did not do a biopsy when you were first diagnosed. Second it is probably a good idea to wait 3 months to confirm that it is really rising

by Sherley (May 6)

Hi. So I’ve been on sprycel now for 3 years, 80 mg in the last 8 months from 100 mg. First line of treatment was Gleevec for the first 6 months. I started out 75% cml +
Category: Children & young people

Replies: 2

Last updated: 6 May 2022
johnw1001 on 15 February 2022

Category: Uncategorised

Replies: 13

Last updated: 5 May 2022

Update on Covid vaccinations for immuno suppressed
by Richard42 (May 5)

Yesterday I received the results of my latest antibody test (measuring spike protein antibodies - these are produced by both the vaccine and infection with COVID). Interestingly, they are 3.5

by johnw1001 (May 5)

Yes, I saw my specialist a few days ago and he said that recently the advice from JCVI and the Green Book became very specific and that those deemed immuno suppressed should have the 5th one as soon

by Patch (May 5)

Hi All,
Thank you all for all the updates
Its very reassuring that some of us have contacted Covid-19 and have survived... as pointed out Covid-19 is still around.
I've also received

by AlastairC (May 5)

Hi John
NHS Wales sent me an appointment for my 5th jab (second booster) without me doing anything. The date was 3 months and 2 days after my first booster.
Category: Uncategorised

Replies: 13

Last updated: 5 May 2022
Kamil on 16 April 2022

Category: About CML

Replies: 8

Last updated: 4 May 2022

Newly diagnosed- Some questions
by David Fitz (May 4)

He was at Kings immediately prior to Guy’s. Every patient of his I have talked to speaks very highly of him, and in the few dealings I’ve had with him I have also found him to be an

by Kamil (Apr 28)

Yup, his our consultant very glad we have him. Pretty sure he came from Hammersmith :)

by David Fitz (Apr 28)

Dr Hugues de Lavallade is at Guys & St Thomas’ these days, so I would say pretty well equipped really.

by EvaH (Apr 27)

Her blood parameters might be all over the place for the next couple of months, don't worry too much about them.
Immediately after diagnosis and treatment, my WBC went the right way but my platelet
Category: About CML

Replies: 8

Last updated: 4 May 2022
Reilly9108 on 1 May 2022

Category: Uncategorised

Replies: 2

Last updated: 4 May 2022

Sprycel
by Sherley (May 4)

I do. Pretty much everyday.

by An (May 3)

My husband had bad knee pain ,drink lots of water and don't sit in one position for a long time.

by Reilly9108 (May 1)

Anyone using Sprycel have achy legs?
Category: Uncategorised

Replies: 2

Last updated: 4 May 2022
mamodei on 15 March 2022

Category: Side effects

Replies: 5

Last updated: 4 May 2022

Muscle pain on Sprycel?
by Sherley (May 4)

Hi. I have muscle pain all the time in one leg. I will definitely try the magnesium too.

by mamodei (May 3)

A combination of drinking more, and using magnesium oil when needed, has helped get this muscle pain under control. I take magnesium orally as well.

by sandy craine (Mar 16)

Hi Maria,
You may be suffering from myofascial pain syndrome... see here
I have recently suffered very similar issues with muscle and joint pain. I have found several things that have helped:

by mamodei (Mar 16)

Thank you. I do think I've been drinking less water so will make sure I'm remembering to drink more. I have magnesium oil which I've used for cramping in the past. I
Category: Side effects

Replies: 5

Last updated: 4 May 2022
Sherley on 1 May 2022

Category: Treating CML

Replies: 2

Last updated: 4 May 2022

Skin rash with blisters and blurry vision
by Sherley (May 4)

Hi Mamodol. Thanks for responding. I’ve tried several drops with no improvement. Also did you apply a cream to the rash to feel better? I saw my my oncologist

by mamodei (May 3)

I am much more susceptible to any skin infections on Sprycel. I did have some blurry vision, but it was dry eye. I'm not sure if the dry eye was caused by the TKI directly, occurred

by Sherley (May 1)

Hi, it’s been awhile since I’ve posted. I was wondering if anyone has experienced blisters and severe itching between toes. I’ve had this going on
Category: Treating CML

Replies: 2

Last updated: 4 May 2022
scuba on 25 March 2022

Category: Uncategorised

Replies: 14

Last updated: 4 May 2022

Treatment Free Remission (TFR) update:
by kali (May 4)

So happy for you Scuba! The information you share is so valuable and helpful. Thank you and best wishes for continued TFR.

by Sherley (May 1)

This is really great news!!! Congratulations on your TFR.

by MJP (Apr 25)

Congratulations!

by onekayaker (Apr 21)

Awesome Suba.....you are an inspiration to us all and such a big positive force that gives strength to those in need.
Your knowledge helped me many times and many others.

Thank you
Category: Uncategorised

Replies: 14

Last updated: 4 May 2022