TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

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Felix on 8 October 2018

Category: Uncategorised

Replies: 4

Last updated: 13 October 2018

Alastair,can you recommend please.
by AlastairC (Oct 13)

Thanks Sandy
Denise I have just sent you an e-mail - hope that's of use.
Alastair

by sandy craine (Oct 13)

Alastair and Denise,
I will put you in touch by email.
Denise, it is not acceptable that your heamatologist does not know what a PCR test is! You can request a referral to another centre that

by Felix (Oct 10)

Thank you Alastair ,I have just sent an email ,Denise.

by AlastairC (Oct 10)

Hi Denise sorry I haven't been around for a few days. In terms of the PCR question, PCR is the analytical method by which the BCR-ABL results are determined. There is booklet which explains how it
Category: Uncategorised

Replies: 4

Last updated: 13 October 2018
HKBails on 11 October 2018

Category: Treating CML

Replies: 8

Last updated: 12 October 2018

Recently diagnosed with cml
by HKBails (Oct 12)

Thank you all so much I feel much more reassured. I want to enjoy the wedding and have so much to do before then. Hopefully speaking to the consultant Wednesday so I’ll know the plan then, thanks

by kat73 (Oct 12)

HKBails - You are absolutely safe to not start imatinib until after the wedding. The doctors would not have let you do so if you were in danger. I am assuming therefore that you are in

by sandy craine (Oct 12)

Hi and welcome,
It's not a great time for you to have this diagnosis- but then it never is a great time. I was diagnosed just before Xmas 1998 (pre-imatinib era) but managed to get through to the

by chrissie (Oct 12)

Welcome to the group of special people! This is the best place to come for good information about CML. We all remember the roller coaster and shock of diagnosis - you are not alone. I have been
Category: Treating CML

Replies: 8

Last updated: 12 October 2018
pc on 8 October 2018

Category: Side effects

Replies: 1

Last updated: 10 October 2018

developed varicose veins as a side effect of imatnib
by David Fitz (Oct 10)

Hi there,
Over the years, people have reported varicose veins as an issue with imatinib, so there's a chance it could be related but of course also a chance it's to do with something else. Gender,

by pc (Oct 8)

I was diagnosed with CML in feb 2018.I was put on imatnib since beginning of march 18.. After 6 months on imatnib,my both limbs starts paining heavily and developed rashes. My hematologist told me
Category: Side effects

Replies: 1

Last updated: 10 October 2018
jab on 8 October 2018

Category: About CML

Replies: 1

Last updated: 9 October 2018

Pleural Effusion, Chemo Holiday! How long has everyone been taken off Sprycel for Pleural Effusion
by kat73 (Oct 9)

Ideal is to stay off Sprycel until pleural effusion is 100% gone. Longest I was able to stay off was 11 weeks; still had very minimal but present fluid. PCR had gone from <0.01% IS to

by jab (Oct 8)

I was wondering how long everyone who had pleural effusion resulting from medication where taken off of Sprycel.? I was on 100mg 1 time per day since 2011. I got almost every side effect but
Category: About CML

Replies: 1

Last updated: 9 October 2018
RC Kirk on 9 October 2018

Category: Treating CML

Replies: 1

Last updated: 9 October 2018

Interview with Dr. Ehab Atallah - discontinuation of treatment for patients with CML
by Rebecca Bonnell (Oct 9)

The Emphasis being on: " and reduce cost." !!!

by RC Kirk (Oct 9)

Treatment-Free Remission Feasible in Select Patients With CML
Angelica Welch
Published Online:4:14 PM, Fri October 5, 2018

Due to significant advancements in the treatment landscape of
Category: Treating CML

Replies: 1

Last updated: 9 October 2018
Nimbus2 on 7 October 2018

Category: Uncategorised

Replies: 6

Last updated: 8 October 2018

Low lymphocyte count
by Nimbus2 (Oct 8)

Thank you, Justine, all of this reassurance is helpful. Regards, Stephen

by Justine (Oct 8)

My lymphocyte % was low at diagnosis and for the first three months on imatinib, but went into normal range and has stayed normal since. It may be normalizing for you soon.

by Nimbus2 (Oct 8)

I appreciate your responding, Jason. I have quite a regular complete blood count record from 2011 onwards related to various other complaints and investigations. I notice that my lymphocyte

by Nimbus2 (Oct 8)

Thank you, Scuba, for preparing such a plausible explanation. There appears to be a rebalancing exercise taking place within the blood system and it is helpful that you too noticed an impact
Category: Uncategorised

Replies: 6

Last updated: 8 October 2018
Bmckenna on 22 September 2018

Category: Side effects

Replies: 6

Last updated: 8 October 2018

Has anyone had to stop working due to tki side effects?
by jab (Oct 8)

I was told potassium and for the most part the leg cramps went away.

by cmljax (Sep 24)

Sorry your TKI is causing so much pain. Side effects often get better with time, but if not, you should discuss switching TKI or if your PCR response is good, reducing dose.

by Philiptibbs (Sep 23)

I have all the same side effects and I'm sorry to say but the only way I cope is Percocet 3-4 times a day and I try and sleep 8-9 hours a night to heal. I do construction and have to work because I'

by scuba (Sep 22)

Start taking 400-500 mg of magnesium (as taurate or citrate) per day with half the dose taken just before sleeping and your cramps should go away.
Category: Side effects

Replies: 6

Last updated: 8 October 2018
Toml on 9 August 2018

Category: Treating CML

Replies: 10

Last updated: 7 October 2018

Help!! PAH and Sprycel onc recommends switch to tasigna
by chigi (Oct 7)

Hi Toml - how are you coming along on Tasigna? Any improvements with PAH? Any fluid retention issues ?
i seem to be in a similar situation. Was on Dasatinib for 5 years. Switched to Bosutinib 6-8

by Toml (Aug 15)

Thanks Sandy. I just started the tasigna but will speak to onc re Bostunib. That sounds like a good option for me since I have had PAH. Perhaps my “plan B” if tasigna doesn’t do

by sandy craine (Aug 14)

Bostunib (Bosulif) may be an answer for you. You could ask your oncologist. UK CML clinicians- amongst others - are positive about this TKI as a good alternative to nilotinib/dasatinib/ponatiib re:

by alison (Aug 12)

You may want to discuss lower starting dose or reducing once your numbers are good enough.
Category: Treating CML

Replies: 10

Last updated: 7 October 2018
Alaina on 5 October 2018

Category: Uncategorised

Replies: 10

Last updated: 6 October 2018

Inquiry about Tasigna reduction
by Alaina (Oct 6)

Thank you for these articles. I saved them to my phone so that I can share them with my doctor. You have been an excellent resource.

by cmljax (Oct 6)

I don't know about my doctor but I have heard that more and more oncologists who treat CML are beginning to recognize that TKI treatment is about fining the least amount of dose that will acceptably

by Alaina (Oct 5)

Has your experience and excellent response encouraged your doctor to attempt dose reduction for other patients as well?

by cmljax (Oct 5)

43%. By the way, there is virtually no risk to try a dose reduction given your current PCR level. If your PCR starts to rise, you just go back to full dose again. Testing frequency
Category: Uncategorised

Replies: 10

Last updated: 6 October 2018
Romo on 5 September 2018

Category: Uncategorised

Replies: 3

Last updated: 6 October 2018

The Dream Clinic.
by RC Kirk (Oct 6)

I had a dream that Romo returned to us when I was going through posts and saw that he had posted this on the 5th, which happens to be today. Then the dream turned to the nightmare when I saw

by Isla D (Sep 6)

Hang in there Thomas. There are a few people on the US site attempting cessation after a few years of 100mg/80mg Sprycel. If you can tough it out it might be worth it. The side effects were too hard

by ThomasS (Sep 5)

I've been having crazy bizarre dreams ever since I started on 100mg Sprycel several years ago. I keep telling my Dr about it trying to get her to drop to 50 mg to see if the vivid dreaming will stop

by Romo (Sep 5)

I was sleeping last night and had a a dream.
I dreamed that my clothes dryer was on fire.
In my dream my clothes dryer was in a narrow closet
that I had to enter with my fire extinguisher
Category: Uncategorised

Replies: 3

Last updated: 6 October 2018
Jason Graves on 6 October 2018

Category: Uncategorised

Replies: 1

Last updated: 6 October 2018

Finally home
by RC Kirk (Oct 6)

Jason, it's good to hear things are settling down. I think your family has had enough matrimonial and medical adventures for this year!
Everyone is different, but some CML patients aren't good

by Jason Graves (Oct 6)

It seems we are on the right path now. My wife cml is being managed from home. She is on glevec with some side effects in the beginning but those are starting to fade. This has been a scary
Category: Uncategorised

Replies: 1

Last updated: 6 October 2018
angela on 16 April 2007

Category: Uncategorised

Replies: 7

Last updated: 6 October 2018

Dizziness
by Rebecca Bonnell (Oct 6)

Hi Dear BM Segelman i also have to wear hearing aids in both ears due to loss of hearing since being diagnosed which has got worse. I have been taken off Glivec and have been on a variety of other

by Rebecca Bonnell (Oct 6)

Hi Dear Angela, A few months back i was experiencing a dizzy type of problem when i went to lay down and turn over in bed and get up, this has since stopped. Now i have been experiencing for

by seggy (Apr 30)

B M Segelman

Taken off Gleevec-side affects, put on Hydroxycarbamide (Hydroxyurea).Side affects not as bad.Ocassional breathlessness,diziness,pain in shoulders,neck and sometimes both legs.

by angela (Apr 17)

Hi Kathy
Thanks for your reply. I've never had the dizziness before and I've had cml for since October 03 only since January this year. Oh well I hope it goes soon.
Take care, love Angela
Category: Uncategorised

Replies: 7

Last updated: 6 October 2018
argyleboy on 4 October 2018

Category: Uncategorised

Replies: 4

Last updated: 5 October 2018

Natural cures for CML/Blast Crisis
by r06ue1 (Oct 5)

So sorry for your loss. CML in blast crisis is incredibly hard to treat at this time, even after successful SCT it can come back.

With current technology, that was the only

by Poppert (Oct 4)

So very sorry for you.
Keep breathing. You did everything right.
Take care of your children. You must be strong now, for them.

by argyleboy (Oct 4)

Thanks, Alastair.

It's a comfort to me to know we did all we could.

by AlastairC (Oct 4)

Hi thanks for your posts. I'm extremely sorry to hear about your loss. F sounds like a wonderful person. It reminds those of us who are fortunate enough to have a good prognosis that we really are
Category: Uncategorised

Replies: 4

Last updated: 5 October 2018
Rick B on 1 October 2018

Category: Uncategorised

Replies: 3

Last updated: 4 October 2018

Imatinib - Stay the Course or Reduce Dosage?
by andycat (Oct 4)

Hello...If I was you I would keep on taking your meds. to a great extent the side affects become far less with time , + it is giving you a longer life. I have been on glivec 12year+

by Rick B (Oct 1)

Thanks for this. I will look at Clark's presentation and listen to your journey. Blessings!

by AlastairC (Oct 1)

Hi Rick, definitely too early I would say. Based on what Prof Clark said at the conference 10 days ago, you should aim to get below 0.1% PCR for a sustained period (probably several years) before

by Rick B (Oct 1)

I had my BMB on June 14th. My PCR score was 12.66%. They caught it early. I started 400 mg per day on July 5th. I just got my results for the BCR-ABL score for a September
Category: Uncategorised

Replies: 3

Last updated: 4 October 2018
argyleboy on 4 October 2018

Category: Uncategorised

Replies: 0

Last updated: 4 October 2018

CML death statistics
by argyleboy (Oct 4)

Hello,

Me again - I've posted below on natural cures for CML.
I've look ed at some stats recently. It seems as though only about 750 are diagnosed with CML in the UK per year and only about
Category: Uncategorised

Replies: 0

Last updated: 4 October 2018
Nimbus2 on 2 October 2018

Category: Uncategorised

Replies: 5

Last updated: 3 October 2018

CML and the immune system
by David Fitz (Oct 3)

I think you are right. The GP just heard “leukaemia” and wants to play it safe. My GP insisted I have a personalised action plan as a high risk patient. It’s totally unnecessary, and to be

by Nimbus2 (Oct 3)

Thank you, Alastair.
I think that the medics at the local surgery are thinking about leukaemia rather generically instead of understanding CML. Therefore their concern from the outset has been

by cmljax (Oct 3)

It is a great question. I was diagnosed 2 years ago and up til then had not had so much as a common cold for nearly 10 years and I have not had one since. When I began taking Tasigna,

by AlastairC (Oct 3)

Hi Justine. Yes I carry some ABs with me in case I need them, and have done since my neutropenia was identified 30 years ago, although I have not had to use them often. My wbc reduced further when I
Category: Uncategorised

Replies: 5

Last updated: 3 October 2018
Justine on 27 September 2018

Category: About CML

Replies: 7

Last updated: 2 October 2018

Article suggesting MPNs incl CML may be passed on to children
by Justine (Oct 2)

Thanks David. Hope all is well with the babies and their mom!

by David Fitz (Oct 2)

Full text here:
http://twin.sci-hub.tw/6987/1e68507247f2c28c0b1d457c9b4a890c/sud2018.pdf
David

by Justine (Oct 1)

Yes, Olivia, I have a cousin (my mother's sister's son) with MM and that's why I am wondering. Is this statistically unlikely? I don't know. Best wishes to all our offspring! Thanks!

by Justine (Oct 1)

Right, Poppert and Josiah, and that's what all the credible CML sources say, but this article made me nervous for my two grown sons. Maybe they should have regular blood tests just in case. But I
Category: About CML

Replies: 7

Last updated: 2 October 2018
gbatalha on 30 July 2018

Category: Blood tests

Replies: 15

Last updated: 1 October 2018

Imatinib apparent failure
by RC Kirk (Oct 1)

That's great news Gonzalo! Why did it take them so long to get your results to you? I can see why the two month wait was agonizing. Are you scheduled for another PCR test at your

by sandy craine (Oct 1)

Gonzalo, very good/wonderful news.. thank you for keeping this forum updated on your experience. I am sure you and your family are very much relieved and you can now see a future where you will

by AlastairC (Oct 1)

Gonzalo, Excellent news, delighted for you. Hope this puts your mind at rest.

Alastair

by gbatalha (Oct 1)

Dear all,
After two very long months I have finally received all the information from my bone marrow analysis (taken at 3/4 months).
Bone Marrow visual analysis - CML in remission
Mutation - None
Category: Blood tests

Replies: 15

Last updated: 1 October 2018
Poppert on 1 October 2018

Category: Treating CML

Replies: 0

Last updated: 1 October 2018

Nobel prize
by Poppert (Oct 1)

Apparently this year’s nobel prize in medicine goes to James P. Allison and Tasuku Honjo for their work on finding a way to ”unleash” the body’s immune system to attack cancer.
It
Category: Treating CML

Replies: 0

Last updated: 1 October 2018
MartinZA on 26 September 2018

Category: Getting help

Replies: 3

Last updated: 1 October 2018

Thank you - conference and cramping
by MartinZA (Oct 1)

Hi Sandy and David
Thanks so much for the answers and for the information! To answer your question, Sandy: I take my magnesium as part of a supplement called Opti-cal (it sounds like it

by sandy craine (Sep 27)

Hi Martin,
good to hear you sorted out the cramp problems with magnesium. Can I ask how much you take and in what form? It would be helpful for others to know and maybe try to deal with this side

by David Fitz (Sep 26)

That is great to hear Martin. I’m so pleased you found the video stream useful. Even better that Alastair managed to help you with your cramps problem - they are the worst! Together, we are able to

by MartinZA (Sep 26)

Hi everyone
First, I want to extend my sincere thanks for the live streaming of the CML patient conference this past weekend. It was such a privilege to be able to see these excellent
Category: Getting help

Replies: 3

Last updated: 1 October 2018