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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
peetyg on 16 August 2019

Category: Drug-drug interactions

Replies: 17

Last updated: 10 December 2022

American needs recommendation for reputable Canadian pharmacy.
by whitebloodcell_Toronto (Dec 10)

https://www.innomar-strategies.com/our-integrated-model/pharmacy
I recommend giving these guys a call .
Go to the contact us page for the addresses and phone numbers.
For Canadians , the government

by An (Dec 8)

Hi,
I am not sure about insurance companies,but at least in India ,generic version of sprycel is now available,I don't know if that is an option in Canada.

Good wishes to your daughter.

by JohnGold (Dec 7)

I know American insurance companies do not cover Sprycel for AML. They don't consider it as a medical necessity drug. I recommend you contact the manufacturer directly. However, take into

by SarahBrad (Dec 7)

Check groups on Facebook. There are many people with the same problem as you. You can find answers.
Category: Drug-drug interactions

Replies: 17

Last updated: 10 December 2022
Santa on 2 December 2022

Category: Side effects

Replies: 2

Last updated: 10 December 2022

For the ladies (ovarian, period issues)
by Santa (Dec 10)

Thank you so much for sharing this info! I will talk to my doctors about this.

by Christine R (Dec 6)

Hi.
One of the questions i can answer is that i did have a mirena coil fitted whilst on immatinib with full approval of my hematologist. It was only removed recently as it had outlived its

by Santa (Dec 2)

Hi! I have CML already for 2 years and since then have been on Imatinib 400mg. I am currently 36 years young and have 2 children. Overall, I have been doing pretty well, however, I noticed that my
Category: Side effects

Replies: 2

Last updated: 10 December 2022
Rosiem on 7 December 2022

Category: Treating CML

Replies: 2

Last updated: 8 December 2022

Ponatinib
by Rosiem (Dec 8)

Thanks Buzz, dose reduction asap. It's so wonderful to wake up after a good night's sleep and feel on the mend.

by Buzzm1 (Dec 7)

Rosiem, your last PCR on 26 Oct was 0.03 so hopefully you will be able to quickly reduce your Ponatinib dosage. From everything that I have read and heard Ponatinib is a difficult TKI to

by Rosiem (Dec 7)

I've been 8 days on 45 mg Ponatinib and doing weekly blood tests.
Two weeks ago I went from someone who walked everywhere and did at least two Pilates classes a week to wanting to sleep all the
Category: Treating CML

Replies: 2

Last updated: 8 December 2022
sandy craine on 7 December 2022

Category: Uncategorised

Replies: -1

Last updated: 7 December 2022

International CML foundation

Category: Uncategorised

Replies: -1

Last updated: 7 December 2022
Rosiem on 28 August 2019

Category: Uncategorised

Replies: 8

Last updated: 7 December 2022

Dasatinib no longer effective, what next?
by scuba (Dec 7)

Your doctor is mistaken to put you on neupogen. Your WBC/neutrophils are fine (i.e. > 0.7). No reason to "stimulate" the cancer (CML).

by kat73 (Dec 6)

Your neutrophils at 1.5 are fine to stay at indefinitely. Only worrisome below 1. It takes a bucket-load of time for blood counts to normalize (couple of years) and even then they often

by Rayyana123 (Dec 1)

Hey Scuba1 My doctor is trying to put me on Neupogen. I have been off of Sprycel for a month and my WBC is at 3.26 and my neutrophils around 1.5. I unsure what other options I have. my BCR was

by Rayyana123 (Dec 1)

Hey Scuba1 My doctor is trying to put me on Neupogen. I have been off of Sprycel for a month and my WBC is at 3.26 and my neutrophils around 1.5. I unsure what other options I have. my BCR was
Category: Uncategorised

Replies: 8

Last updated: 7 December 2022
Kamil on 7 December 2022

Category: Uncategorised

Replies: 2

Last updated: 7 December 2022

High vitamin D
by scuba (Dec 7)

Sandy's video link above is an excellent summary.
Adding to it, taking higher levels of vitamin D3 (~10,000 IU's per day) will take weeks to months to raise vitamin D levels substantially

by sandy craine (Dec 7)

Hi, See the following link to Grassroots Health article about higher levels of Vit D - Can You Benefit from Having Vitamin D Levels Over 60 ng/ml? 100 ng/ml?
Sandy

by Kamil (Dec 7)

Hi all,
I hope everyone is doing well.
I am pretty sure that there’s nothing to worry about, but my partners vitamin D levels are pretty high 185 nmo/l. The blood were actually drawn
Category: Uncategorised

Replies: 2

Last updated: 7 December 2022
srent on 3 December 2022

Category: Treating CML

Replies: 7

Last updated: 6 December 2022

Sprycel and Pleural Effusion
by kat73 (Dec 6)

Totally agree with Denise. The key is that you have time and options. You can TRY 20 mg of dasatinib and see if it keeps your PCR down and your pleural effusion gone. You can try

by srent (Dec 3)

Thanks Denise. Good thoughts. Will get the second opinion and take it from there. Will report back.

by Felix (Dec 3)

Hi, you will feel fine on Dasatinib,if you reduce to 20 mg ,100 mg is too toxic .Dont let your doctor bully you to change to Imatinib the side effects are so much worse on that ,I found anyway .Its

by srent (Dec 3)

Thanks Buzz - very helpful.
The pulmonologist drained my right lung - 1.3 liters. We are going to wait until after the holidays to restart the treatment.
Sounds like I should get a 2nd opinion and
Category: Treating CML

Replies: 7

Last updated: 6 December 2022