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bendicco on 19 November 2019

Category: Blood tests

Replies: 2

Last updated: 19 November 2019

Should I worry?
by bendicco (Nov 19)

Thank you Kat! Thank You!

by kat73 (Nov 19)

Major molecular response (MMR, or MR3) is 0.1. You are a couple of logs' worth beyond (below) that, congratulations! In many labs, your number would not even be reported - they would

by bendicco (Nov 19)

Hi all. I see a doc at Sloan in NY . Six months ago my CML bloods registered 0.002 then three months ago it was not detectable. I was so excited! Had my bloods drawn again last week and just
Category: Blood tests

Replies: 2

Last updated: 19 November 2019
Simon Allchin on 18 November 2019

Category: Treating CML

Replies: 2

Last updated: 19 November 2019

What are the highs and lows of a stem cell transplant?
by Simon Allchin (Nov 19)

Thanks, will read the link this evening. Haven’t given up on TKIs yet, still part of an Asciminib trial and will also try Basutinib if the former is too unkind. Already been pulsing for two

by scuba (Nov 19)

No sugar coating:
https://www.nature.com/articles/s41409-019-0624-z
"Death after hematopoietic stem cell transplantation: changes over calendar year time, infections and associated factors

by Simon Allchin (Nov 18)

Looking increasingly likely none of the TKIs are going to be kind enough to my good blood cells to allow me to continue treatment with them so was just wanting to hear the experiences of anyone who
Category: Treating CML

Replies: 2

Last updated: 19 November 2019
Ghraut70 on 15 November 2019

Category: Reproductive health

Replies: 4

Last updated: 17 November 2019

Swollen lymph nodes
by Ghraut70 (Nov 17)

Hi Martin,

Thanks so much for your response and yes please I would like to have the articles. My email address is rautgeraldine@yahoo.com.

it so unfortunate that I developed swollen

by Ghraut70 (Nov 17)

Thanks so much Alex.

by MartinZA (Nov 16)

Hi there
I am the patient who developed swollen lymph nodes on Sprycel. They kept growing and eventually were the size of golf balls.
There is definitely a link to swollen lymph nodes and dasatinib

by alexmcpee (Nov 16)

Hi
Their is defo a link with swollen Lymph Nodes and Sprycel. I have a CML friend who was on Sprycel and was taken off as they appeared to enlarge the nodes. It’s rare but best to be mindful
Category: Reproductive health

Replies: 4

Last updated: 17 November 2019
Tanya Cuffe on 15 November 2019

Category: Uncategorised

Replies: 8

Last updated: 16 November 2019

Undetectable 6months 50 mg Sprycel
by Tanya Cuffe (Nov 16)

Thanks,friend:)

by Tanya Cuffe (Nov 16)

Thanks heaps Chuckster,yes I hope so too!

by Tanya Cuffe (Nov 16)

Thanks Denise:)it’s only cause of info from this site that has informed me as to best way with Sprycel eg lower dose,taking Tumeric,D vitamins and Magnesium and all the other help!Hope yr well

by Felix (Nov 16)

Hi Tanya ,fabulous news ,whatever you are doing keep doing it it's working haha .Love Denise.
Category: Uncategorised

Replies: 8

Last updated: 16 November 2019
domonthebay on 11 November 2019

Category: Side effects

Replies: 3

Last updated: 15 November 2019

Update on side effects from Sprycel
by Mick E (Nov 15)

Thanks for the reply!
the current 600mg daily has today broken me. Struggled to even slow jog short distance and breathlessness walking, this cannot be normal! The only

by domonthebay (Nov 15)

My doctor (head of the Leukemia dept. at Hopkins) seems to think I respond well to these TKIs (despite the side effects) and he favors the lower doses to reduce the long term cardiac and other more

by Mick E (Nov 11)

Do you know why they decided to start the dosage at 150mg twice daily? I’m currently on 300mg twice daily and from what I have read that 600mg daily appears to be a lower dose than

by domonthebay (Nov 11)

First, thanks for all the feedback from everyone. Side effects are: shortness of breath, heart palpitations (minor) itching (major) and chest pains (worse at first then fading to almost never
Category: Side effects

Replies: 3

Last updated: 15 November 2019
r06ue1 on 15 November 2019

Category: Treating CML

Replies: 2

Last updated: 15 November 2019

Researchers find potential new treatment for chronic myeloid leukemia
by Vikram (Nov 15)

Amazing......
Finger cross.....
But.....
Mice trial and human trial different....
Miristen 126 cure Cml in mice..... Reserch continue......
No update and news...... About miristen 126 ..... Last

by Mick E (Nov 15)

That is an amazing discovery! 😁
lets hope that it works as successfully in humans and that it will also help improve the understanding of other disease characteristics!🤞

by r06ue1 (Nov 15)

Sounds like a cure to me.

When they combined the antibody and TKI treatments, the CML cells could not grow at all, Chute added.
“The combination of this antibody with
Category: Treating CML

Replies: 2

Last updated: 15 November 2019
koralia.pappi on 3 November 2019

Category: Side effects

Replies: 6

Last updated: 14 November 2019

Nilotinib and heart palpitations
by David Fitz (Nov 14)

I've had this from time to time as well. Recently, the 3-point ECG on my smart watch was indicating unusual results and I wasn't feeling 100% at the time. Like you, it cleared up on its own

by koralia.pappi (Nov 14)

Hi Alex, cmljax,
Thank you both for your answers. A week later, all I can say is that, whatever it was, it was cyclic, and went away after a week.
It could be stress, or it could be some minor

by cmljax (Nov 9)

Could be all caused by stress/anxiety, but I am pretty sure that my recurrence was not. I think for me the palpitations are caused by the TKI and perhaps exacerbated stress.

by alexmcpee (Nov 8)

Hi Koralia,
I have been on Nilotinib for 19 months after 3 months on treatment and I had palpitations that lasted for around another 3 months. The diagnosis affected me really hard mentally and
Category: Side effects

Replies: 6

Last updated: 14 November 2019
Basil from RSA on 9 November 2019

Category: Uncategorised

Replies: 10

Last updated: 13 November 2019

News from Basil in South Africa
by Basil from RSA (Nov 13)

Thank you for you kind words. I try to use my good fortune to inspire and encourage all CML patients to achieve what was initially thought as unachievable.
Our special FB Group called

by chrissie (Nov 13)

Wow Basil. tremendous news. many, many congratulations. Your success gives us all hope for the future and is especially helpful and optimistic for "newbies".
Best
Chrissiex

by Basil from RSA (Nov 12)

Thank you very much.

by Vikram (Nov 12)

Congratulations basil
Category: Uncategorised

Replies: 10

Last updated: 13 November 2019
slindon2 on 9 November 2019

Category: Blood tests

Replies: 2

Last updated: 11 November 2019

BCR/ABL after 4 years
by slindon2 (Nov 11)

David
Thanks for your quick response. I am on 100mg Dasatinib. I take no other medication prescribed or over the counter. I havent had a cold or flu for about 6 years. The only thing i have

by David Fitz (Nov 10)

Hi Paul,
There are quite a few forum members who took many years to reach MMR, and many others too who have got close but never quite got there. I recall a seminar with a CML specialist and his view

by slindon2 (Nov 9)

Hi all
its been a while since i looked for some advice so here goes...
Im coming up for 4 years since diagnosis.
After 2 years on Imatinib I went resistant, I should have been changed to
Category: Blood tests

Replies: 2

Last updated: 11 November 2019
Mick E on 10 November 2019

Category: Uncategorised

Replies: 2

Last updated: 11 November 2019

Lung problems
by Mick E (Nov 11)

Dasatinib had the same effect on me. When I first started at 100mg I was having serious problems even resting. The dosage was subsequently lowered to 50 then 25mg but the problem

by domonthebay (Nov 11)

I am sorry you are going through this side effect. I hope it gets better and eventually ends altogether. Its a terrible feeling. I have very minor but noticeable shortness of

by Mick E (Nov 10)

Have any of you developed lung problems or had lung conditions exacerbated whilst taking Imatinib or Nilonotib?
i have started to have a worsening problem with a dramatic drop in exercise tolerance
Category: Uncategorised

Replies: 2

Last updated: 11 November 2019
S Davis on 27 October 2019

Category: Side effects

Replies: 7

Last updated: 11 November 2019

Looking for treatment options for bumpy red rash from Dasatimib
by domonthebay (Nov 11)

one temporary relief I recently found to itching skin/rash from Dasatinib is Dr. Bronner Pure Castile Peppermint Soap - I am not sure if you can get it everywhere but likely on the web... (see

by S Davis (Nov 10)

The dose of Dasatinib I am on is 80 mg. The bumpy rash is persisting, but not worsening and is otherwise not symptomatic. Keeping skin well moisturized seems to help. Remarkably,

by Rosiem (Nov 9)

Since my dose of Dasatinib was increased to 70 mg, I have an itchy, scaly rash in both eyes and around the left eye. I moisturise the ears with tea tree cream twice a day and that seems to control

by S Davis (Nov 6)

Thank you for sharing your experience. After two weeks, the widespread bumpy, red rash seems to be dissipating a bit. It is not itchy or burning. I too think just keeping my skin
Category: Side effects

Replies: 7

Last updated: 11 November 2019
chrissie on 27 February 2018

Category: Side effects

Replies: 14

Last updated: 9 November 2019

Higher creatine level (kidneys)
by chrissie (Nov 9)

Hi Richard
Thank you for your thought. No problem with kidneys now - and I can't remember what the outcome was back in 2018- so I guess all was OK
Funnily enough I had my latest results back

by Richd478 (Nov 9)

Hi,
I wanted to follow up with you to see if your doctor ever found out the cause of the elevation. Currently I’ve been on Gleevec for 8 years with no issues and full MMR remission. However,

by chrissie (Mar 3)

Thanks for your reply Isla .I printed off the article for my GP .David also gave me the link. Thanks also for your reassurance,
Hope you are doing well
Best
Chrissie

by Isla D (Mar 2)

Hi Chrissie
My creatinine levels have increased and my eGFR levels have decreased since starting dasatinib so I've done a fair bit of panicking and research on TKIs and kidney health myself.
In 2016
Category: Side effects

Replies: 14

Last updated: 9 November 2019
vholly on 25 October 2019

Category: Blood tests

Replies: 3

Last updated: 9 November 2019

Rising BCR-ABL
by Amackerness (Nov 9)

The same thing has happened to me gone up to 0.026 from 0.009. First increase and being 're tested next month I have felt so much better and I really don't want to change medication.

by vholly (Oct 30)

Thank you kat73 - great to have reassurance from you. Much appreciated!
victoria.

by kat73 (Oct 25)

Absolutely of no concern whatsoever. Completely statistically insignificant. Well within lab error range, sample error range. As Scuba likes to call it, the "noise" of

by vholly (Oct 25)

Hi all,
apologies for repeating a common thread but I can’t find info that contains similar numbers to mine so I want to put a question out there.
I’m just over 2 year since diagnosis -
Category: Blood tests

Replies: 3

Last updated: 9 November 2019
vonnie on 8 November 2019

Category: Uncategorised

Replies: 2

Last updated: 8 November 2019

Diarrhoea
by vonnie (Nov 8)

thanks Alex very much for your reply
Vonnie

by alexmcpee (Nov 8)

Hi there.
Ive been on treatment for 19months and get bouts of the above and constipation from time to time. I’ve recently been having probiotics as recommended by someone else and my “

by vonnie (Nov 8)

Hello everybody have not been on line for quite a while but i would love some advice if at all possible,i experiencd a sudden bout of the above during the night and i am trying to find a cause for
Category: Uncategorised

Replies: 2

Last updated: 8 November 2019
scuba on 8 November 2019

Category: Uncategorised

Replies: 0

Last updated: 8 November 2019

2019 ASH Conference Abstracts
by scuba (Nov 8)

https://ash.confex.com/ash/2019/webprogram/start.html
Category: Uncategorised

Replies: 0

Last updated: 8 November 2019
JohnFromChicago on 6 November 2019

Category: Uncategorised

Replies: 1

Last updated: 6 November 2019

New Basophils (1% and absolute value of .1) but with decreasing PCR 0.008
by scuba (Nov 6)

I suspect nothing to worry about at all. The fact your PCR is below precision limit of the test (i.e. PCR < 0.01%) suggests your CML is no longer an issue. Basophills rise and fall as the body

by JohnFromChicago (Nov 6)

I recently had my lowest PCR yet 0.008 and on just 50mg which I was very very happy about. However my oncologist contacted me today wants me to return in a three weeks for another CBC and a
Category: Uncategorised

Replies: 1

Last updated: 6 November 2019
alison on 4 November 2019

Category: Uncategorised

Replies: 2

Last updated: 5 November 2019

Update: return to meds after TFR fail (good news)
by alison (Nov 5)

@kat73 That is exactly why I posted this info. There is little on the boards about Bosulif and have never heard of anyone on only 100 mg. I’m really hoping this isn’t too good to

by kat73 (Nov 4)

That is such good news, congratulations! And thanks for sharing the info. This adds to the picture that TFR attempts are not so risky. Good news also on the Bosutinib being

by alison (Nov 4)

Sharing my husband’s experience returning to meds after 2nd TFR attempt:
Everyone likes to hear good news! After only 5 weeks on 100 mg Bosulif (very low dose) my husband’s BCR-ABL is .
Category: Uncategorised

Replies: 2

Last updated: 5 November 2019
scuba on 31 October 2019

Category: Uncategorised

Replies: 8

Last updated: 4 November 2019

Emerging importance of vitamin K2
by scuba (Nov 4)

No harm in taking too much K2 - although for practical and cost reasons, you don't want to go much above 800 mcg per day.
I take about 400 mcg per day between natto and supplements. I keep my K2

by jriccoboni (Nov 4)

Hey scuba I recently had my vitamin d and k checked before taking supplements. My doctor mistakenly checked my vitamin k1 levels and they came out above normal. Does k2 effect my k1 levlels.

by scuba (Nov 2)

Here is a resource list:
https://bodynutrition.org/vitamin-k2/
The one I take is from Innovix Labs (number 4 on the list).

by Mick E (Nov 2)

Scuba
where do you get your K2 mk5 from please.
its been very useful reading your post, thank you! 👍🏻
Category: Uncategorised

Replies: 8

Last updated: 4 November 2019
David Fitz on 12 October 2019

Category: Uncategorised

Replies: 10

Last updated: 1 November 2019

Videos of UK CML Patient Day now available
by Fillette (Nov 1)

Thanks David for sharing. The videos are very informative

by David Fitz (Oct 22)

Thanks! I don’t think there are similar events in the US, at least not as coordinated. You could get in touch with Joannie and Jerry Clements at CML Busters in the US who are clued into US

by domonthebay (Oct 22)

Thanks for posting this content... I am in the US, not sure if there are events like this here (likely there are) but I am only 3 months into my journey with CML so still in heavy discovery mode...

by Mixail (Oct 19)

Thank you for posting. The videos where very informative.
Category: Uncategorised

Replies: 10

Last updated: 1 November 2019
mbrit on 30 October 2019

Category: Getting help

Replies: 4

Last updated: 31 October 2019

(Somewhat) newbie asking for some guidance
by mbrit (Oct 31)

I have read the general info about CML but I have not been able to find blogs like the one you mentioned. It has so much great information, thank you very much!

by kat73 (Oct 30)

Also, see the resources on this site (at the top) in Patient Info and About CML. Everything you could possibly want to know is contained in treyscml.blogspot.com.

by mbrit (Oct 30)

Thank you so much for taking the time to answer!

I feel alot more at ease now and will start researching all the new information.

Thank you again!

by scuba (Oct 30)

Mbrit -
Congratulations on reaching 0.02% in less than a year. Any level below 0.1% is major molecular remission AND you will never die from CML. Over 95% survival rate for patients attaining this
Category: Getting help

Replies: 4

Last updated: 31 October 2019