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Alan Locke on 16 December 2021

Category: Uncategorised

Replies: 3

Last updated: 31 December 2022

Early Christmas present
by kat73 (Dec 31)

I spent my first two years feeling extremely "unwell" on imatinib. It worked great on the CML, but I ultimately switched to dasatinib because of the imatinib side effects of general

by Alan Locke (Dec 23)

Please keep looking for ways to help you cope with your side effects.
My consultant and this forum has really helped me to try new things. From checking vitamin D levels, eating 3 brazil nuts a day,

by Ammarto2 (Dec 16)

So have mine but Imatinib makes me feel generally unwell most of the time

by Alan Locke (Dec 16)

Seven weeks on imatinib and my wbc + platelets have come down to normal blood count levels!!
For my 3rd hospital appointment in 6 weeks. My bcr-abl will be checked.
So pleased to be following
Category: Uncategorised

Replies: 3

Last updated: 31 December 2022
Russell girl on 27 December 2022

Category: Side effects

Replies: 13

Last updated: 29 December 2022

Continued side effects
by Fernando Burbano (Dec 29)

Excelentes noticias Alaister.

Ejercicio y salud mental es lo mejor.

Bendiciones.

by AlastairC (Dec 29)

Hi Denise yes I'm fine thanks. I had 4 weeks off my imatinib in July/August while the wound from my hip replacement healed. The hip problem dates back to a sports injury when I was a teenager.

by Felix (Dec 29)

Hi, with your BRC ABL being so low you only really need to be on 20 mg now .As mine went down I gradually reduced my dose .I started at 50 mg after changing from Imatinib,then 40 mg ,then 20 mg.Been

by YianniA (Dec 29)

Felix

if I may ask you question as I saw your post. Been in Dasatinib for 5 with BCR at 0.003 but still taking 70 mg of the drug. I am just curious if you can share, is that how fast
Category: Side effects

Replies: 13

Last updated: 29 December 2022
Norma_55 on 16 December 2022

Category: Uncategorised

Replies: 2

Last updated: 26 December 2022

Ponatinib
by skiinglaketahoe (Dec 26)

Hi Norma
I found your post interesting. I, too, am on Ponatinib and have a numb foot. However, I am (or was?) certain that mine is due to shingles as I noticed in at the same time as I had shingles

by Richard (Dec 21)

Hi Norma,
welcome to the world of ‘post cml’. I have been on mmr for nearly two years, and my haematologist has just withdrawn treatment. So I’m on a sleigh ride to

by Norma_55 (Dec 16)

Hello out there fellow CML’s
I have had some fantastic news my CML is undetectable. A new lease of life.
I was just wondering if there is anyone who is suffering side effects or
Category: Uncategorised

Replies: 2

Last updated: 26 December 2022
kristina on 26 December 2022

Category: Uncategorised

Replies: 1

Last updated: 26 December 2022

Water fasting on Imatinib? Is it possible?
by scuba (Dec 26)

Imatinib causes stomach irritation which is minimized with food. Water fasting while taking imatinib will very likely create a horrible feeling leading to an inability to keep the drug from being

by kristina (Dec 26)

Hey everyone! I am two weeks on Imatinib, and have been doing intermittent fasting since I was diagnosed one month ago.
I have seen a lot of great information here around fasting
Category: Uncategorised

Replies: 1

Last updated: 26 December 2022
Dustylloyd on 21 March 2019

Category: Blood tests

Replies: 26

Last updated: 21 December 2022

Alcohol and Cml
by Fernando Burbano (Dec 21)

Hola Phillip

Leí que eras físico culturista.

Quería preguntarte si todavía haces ejercicio o lo dejaste por la LMC?. Yo procuro seguír ejercitando en el Gym , pero ya no como antes , me

by Rocky Mountain Gal (Aug 3)

I was taking milk thistle prior to my diagnosis, but was told to stop. That was in the early days, when they had me on multiple drugs.
Is there a resource for checking supplements against

by onekayaker (Aug 3)

Long time to get results!!! The waiting is the worse.

by scuba (Aug 3)

In fact, ANY amount of alcohol is bad for you. I was reading this over a glass of scotch:

https://www.theguardian.com/society/2021/may/18/any-amount-of-alcohol-co...

Other research I came
Category: Blood tests

Replies: 26

Last updated: 21 December 2022
cousineg2 on 18 December 2022

Category: Treating CML

Replies: 1

Last updated: 19 December 2022

Is hematopoietic cell transplantation in CML still relevant in 2022?
by Rosiem (Dec 19)

I'm one of those unfortunates who is being considered for a transplant. Diagnosed November 2016, failed Imatinib, allergic to Bosutinib, pcr 0.03 on Dasatininb, unsuitable for Asciminib as

by StayStrong3916 (Dec 18)

I believe it is.
Some stop responding and they run out of TKI options. Some experience side effects severe enough to stop a particular TKI and does not respond to others.
And the accumulation of
Category: Treating CML

Replies: 1

Last updated: 19 December 2022
cmljax on 13 March 2018

Category: About CML

Replies: 10

Last updated: 19 December 2022

What caused your CML?
by whitebloodcell_Toronto (Dec 19)

Hi Scuba,
I know this is an old post but I came across this website which can give an idea as to how radiation one would receive using different procedures .
https://www.omnicalculator.com/health/

by RC Kirk (Mar 15)

From the article: "We were exposed to heavy exhaust fumes. Most vehicles were operated and serviced inside of our building without being connected to the external ventilation system. Another problem

by chevyflame (Mar 15)

Very informative article. Sad but unfortunately not surprising.
It wasn't until 2012 that the VA offered free medical to veterans for illnesses caused by the toxic water contamination.

by Justine (Mar 14)

I have no idea what caused mine. We also live in a high-radon area but our home has a radon reduction system that seems to work.
We can be very grateful for all the cancer research that has helped
Category: About CML

Replies: 10

Last updated: 19 December 2022
Jacqueline Allmark on 19 December 2022

Category: Uncategorised

Replies: 1

Last updated: 19 December 2022

Developing other forms of cancer after CML
by David Fitz (Dec 19)

Hi Jacqueline,
There is no link between having CML, and then developing another cancer. You have no particular reason to seek other screening purely because of CML.
The other way around is

by Jacqueline Allmark (Dec 19)

What are the chances of developing another form of cancer as well as CML I have CML diagnosed 2019 in remission on imatinib My mother had lung cancer some sites say that I have a greater chance of
Category: Uncategorised

Replies: 1

Last updated: 19 December 2022
StayStrong3916 on 18 December 2022

Category: Uncategorised

Replies: 0

Last updated: 18 December 2022

Sauna and/or Milk Thistle?
by StayStrong3916 (Dec 18)

For about a month, I've been using the sauna on a regular basis for it's potential benefits against cml.
In addition to reducing inflammation, acting as an exercise mimetic, and calming
Category: Uncategorised

Replies: 0

Last updated: 18 December 2022
StayStrong3916 on 1 December 2022

Category: Treating CML

Replies: 20

Last updated: 17 December 2022

Fasting and TKIs
by StayStrong3916 (Dec 17)

Update
My imanitib is scheduled to arrive 13/12/2022.
In preparation, I have started my 48-72 hour water fast. Because I have to take imatinib with food, I plan on doing IF with a very restricted

by StayStrong3916 (Dec 15)

Update:

Effective 15/12/2022, I have changed the title of this thread from "Fasting Mimicking Diets and Sprycel" to a more broad "Fasting and TKIs"
After a whopping

by StayStrong3916 (Dec 9)

I am becoming more and more converted to the power of fasting.
As I research mTOR and AMPK, I am convinced the two pathways were out of balance in my body.
From late April to late October 2022:
1)

by scuba (Dec 8)
Category: Treating CML

Replies: 20

Last updated: 17 December 2022
StayStrong3916 on 16 December 2022

Category: Uncategorised

Replies: 4

Last updated: 17 December 2022

Two TKIs At the Same Time?
by StayStrong3916 (Dec 17)

Thank you! Your input is greatly appreciated.
My current oncologist was quite binary in taking me off sprycel. Why not consider a lower dose in conjunction with monitoring from a cardiologist?
I am

by Sunny (Dec 17)

Thank you StayStrong, I found this article really fascinating.
From what I understand it is not standard practice yet, because as they say in the article: "Whether such cooperative TKI

by StayStrong3916 (Dec 17)

Here is an abstract for bosutinib and dasatinib:
https://pubmed.ncbi.nlm.nih.gov/30711891/
It give me optimism because I stopped responding to bosutinib/bosulif after about six months and had to

by Sunny (Dec 17)

Interesting....could you please send us the link where you came across this info?
Thanks, pigeon
Category: Uncategorised

Replies: 4

Last updated: 17 December 2022
Reilly9108 on 17 December 2022

Category: Uncategorised

Replies: 0

Last updated: 17 December 2022

Ca 125
by Reilly9108 (Dec 17)

Anyone know anything about this test?
Does CML or Sprycel affect this number
Category: Uncategorised

Replies: 0

Last updated: 17 December 2022
scuba on 17 December 2022

Category: Uncategorised

Replies: 0

Last updated: 17 December 2022

It's winter (north of the equator) .... vitamin D!
by scuba (Dec 17)

Over and over we see reports on the importance of maintaining higher than government recommended levels of vitamin D
especially to help avoid Covid and other respiratory diseases as well as lower
Category: Uncategorised

Replies: 0

Last updated: 17 December 2022
worried90 on 8 September 2022

Category: Children & young people

Replies: 9

Last updated: 17 December 2022

Test results read any help please ?
by Littleshit (Dec 17)

I am in the same situation with the same numbers I am confused

by David Fitz (Sep 17)

I think there is a little bit of misunderstanding here.
These tests looked for CML, and the “lower than 0.0032%” is a bit of a misnomer. Many labs have a sensitivity cut-off at 0.0032%,

by hannibellemo (Sep 10)

Dear Worried,
It does not appear that you have blood work results consistent with undiagnosed CML. CML is definitively diagnosed with a bone marrow biopsy. For example, at diagnosis my WBC was over

by worried90 (Sep 8)

They decided to send me to a specialist they are the ones who ordered the blood work for cml
the dr asked any symptoms no symptoms at all
my wbc has always been high for years the dr finally decided
Category: Children & young people

Replies: 9

Last updated: 17 December 2022
Reilly9108 on 7 December 2022

Category: Uncategorised

Replies: 2

Last updated: 17 December 2022

Ca125 Results climbing
by whitebloodcell_Toronto (Dec 17)

Both use radiation/XRays. Scuba is right as rain about CT scan. Can’t you ask your doc for a MRI instead ?
I have a small list of thoughts which keep haunting me every single day

by scuba (Dec 7)

This is why I will never have another CT scan again.

https://www.news-medical.net/news/20191119/Radiation-from-CT-scans-can-i...

by Reilly9108 (Dec 7)

Dr order Cat Scan negative than ordered petscan
Which is better?
Category: Uncategorised

Replies: 2

Last updated: 17 December 2022
vlacer on 14 December 2022

Category: Treating CML

Replies: 2

Last updated: 15 December 2022

Why does the BCR/ABL % decreases rapidly first and then the decrease slows down?
by vlacer (Dec 15)

Hi Martin,
Thanks for your reply. I was diagnosed 5 months ago thanks to a blood test after COVID 19 infection, so I am trying to learn as fast as I can about CML and this Forum is a great

by MartinZA (Dec 15)

Hi vlacer
This is an interesting question and I think about it differently to you - to me it is logical for the TKI to struggle to kill off the few remaining cells when BCR-Abl is at a low level.

by vlacer (Dec 14)

My BCR/ABL went from 50.2% at diagnosis to 1.7% in just 10 weeks, but in the last two months the reduction is only from 1.7% to 0.233 %. The logic should be that having less CML cells in your blood
Category: Treating CML

Replies: 2

Last updated: 15 December 2022
YianniA on 15 December 2022

Category: Side effects

Replies: 2

Last updated: 15 December 2022

Edema and low sodium at the same time
by YianniA (Dec 15)

Hi Scuba
Thank you so much for quick reply. My BCR is currently 0.005. I have been no pinching around this low range for a year and even reached 0.002 earlier this year.

I am

by scuba (Dec 15)

What dose sprycel do you take? (and your age)
Endema and low sodium at the same time can be a side effect of sprycel. Depending on your current PCR level, you could stop taking it and see if the

by YianniA (Dec 15)

CML - Sprycel - six years - great levels and close to remission Live in the US.
Having a lot of issues lately with edema in lower legs swollen ankles and feel chills. But also have low sodium
Category: Side effects

Replies: 2

Last updated: 15 December 2022
liza on 19 November 2022

Category: Reproductive health

Replies: 9

Last updated: 14 December 2022

Complementary therapy/ herbs/ fish oils while taking Dasatinib
by whitebloodcell_Toronto (Dec 14)

How are the liver enzymes? Any improvement after the supplements ( I know it’s early to say but just checking either way ) . Are you feeling slightly better atleast ?

by liza (Nov 25)

Hi,
thank you for the info, I will give that a try, thank you, the videos on YouTube were quite helpful and informative. Since I have been diagnosed with this condition, it’s been a big

by whitebloodcell_Toronto (Nov 24)

This is what I use ....
https://www.amazon.ca/Now-Omega-3-6-9-1000mg-Softgels/dp/B008X8IVOI/ref=...
Just go on amazon and search, "omega 3 6 9 seed oil blend supplements".

by liza (Nov 24)

Thank you so much for your support, I really appreciate it. I was going to ask you as well if it’s not too much trouble, if you could let me know the name of the Omega 3-6-9 oils capsules you
Category: Reproductive health

Replies: 9

Last updated: 14 December 2022
parmaviolet on 12 December 2022

Category: Side effects

Replies: 2

Last updated: 13 December 2022

Hair loss on nilotinib
by sandy craine (Dec 13)

So sorry to hear you have such a distressing side effect from nilotinib. This is a well documented side effect of Tasigna - see this forum thread from 2019.
As your doctor is open to

by Sav_5 (Dec 13)

Hi Parmaviolet,
I was diagnosed in December 2021 too and have been on nilotinib since then. About hair losing I think is the same problem for all on Nilotinib, (more stressful situation for

by parmaviolet (Dec 12)

Hello everyone.
I was diagnosed in December 2021 and have been on nilotinib ever since. After 2 months, I started losing my hair, and this has continued slowly but surely ever since. It
Category: Side effects

Replies: 2

Last updated: 13 December 2022
scuba on 13 December 2022

Category: Uncategorised

Replies: 0

Last updated: 13 December 2022

Study Supports Low-Dose Dasatinib as Standard Frontline Therapy in Certain CML Patients
by scuba (Dec 13)

https://journals.lww.com/oncology-times/blog/onlinefirst/pages/post.aspx...

“The patients were started on dasatinib 50 mg daily and were monitored every 3 months the first year and
Category: Uncategorised

Replies: 0

Last updated: 13 December 2022