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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
Fernando Burbano on 3 December 2022

Category: Food & fitness

Replies: 2

Last updated: 5 December 2022

Cómo tomar imatinib
by Fernando Burbano (Dec 5)

Hola Martín.

Muchas gracias por tu información. Voy a volver a tomarlo después de mi desayuno. El medicamento que yo tomo es genérico, el que me da el gobierno de mi país Ecuador. Y me das una

by MartinZA (Dec 5)

Hola Fernando
Hace 4 años que estado tomando imatinib de 400mg, y yo lo tomo todas las tardes después de cenar. Entonces, nunca con el estómago vacío. Tomo tambien mucho café sin

by Fernando Burbano (Dec 3)

Hola amigos.

Disculpen la pregunta,

Estuve tomando imatinib de 400mg en la mañana con mi desayuno, y me sentía bien. Consulte otro Dr y me dijo que debo tomarlo con el estómago vacío con
Category: Food & fitness

Replies: 2

Last updated: 5 December 2022
MartinZA on 8 November 2022

Category: Treating CML

Replies: 15

Last updated: 5 December 2022

Update on my involuntary TFR attempt due to low blood counts
by MartinZA (Dec 5)

Hi Buzz
Thank you once again for the really helpful info. I agree wholeheartedly with your advice and also believe I should have been on a much lower dose... I've just been for the test,

by Buzzm1 (Nov 29)

Martin, if I read your CML history summary correctly you experienced a swollen lymph node issue after three years on Dasatinib 100mg and were switched to Imatinib 400mg for the last four years

by MartinZA (Nov 29)

Hi everyone
Sorry for the late response to all the incredibly helpful messages - it's our academic year-end and I've been really busy marking my students' exams, so haven't checked

by Buzzm1 (Nov 18)

Martin, as a measure of your response to stopping your TKI three months ago, during the STOP Trials, at three months TFR, most of those who were going to relapse (exceed 0.1), had already done so.
Category: Treating CML

Replies: 15

Last updated: 5 December 2022
DawnD on 7 September 2018

Category: Uncategorised

Replies: 25

Last updated: 2 December 2022

Low hemoglobin
by scuba (Dec 2)

My doctor avoided giving me Neupogen when my neutrophils fell to 0.1 - He said it can stimulate the cancer as well as normal cells. He said it was best to let my neutrophils recover naturally while

by Rayyana123 (Dec 2)

Yes bcr-abl. Mine is at at 10.0585 from 61.8855 . My doctor is trying to give me Neupogen beause my WBC is around 3.2 and my Neutrophils are around 1.5. I am on Sprycel currently! I have been off my

by scuba (Dec 1)

BCR?
Do you mean bcr-abl? or PCR?

by Rayyana123 (Dec 1)

Scuba, what was you BCR when you stop taking medicine. Mine is around 10.6 , I have been on Sprycel about 7 months.
Category: Uncategorised

Replies: 25

Last updated: 2 December 2022
jmonzione on 1 December 2022

Category: Food & fitness

Replies: 1

Last updated: 1 December 2022

Is it okay to drink my greens?
by StayStrong3916 (Dec 1)

I cannot answer the question about asciminib absorption.
However, I believe juicing can break up the fiber in the vegetables and fruit. The fiber is very important for a strong microbiome.
And some

by jmonzione (Dec 1)

Quick question for the group - do we see any issue with consuming blended spinach and romaine and celery with a small amount of fruit? Fruit is usually apple or banana and a splash of lemon juice. I
Category: Food & fitness

Replies: 1

Last updated: 1 December 2022
Rayyana123 on 8 November 2022

Category: Blood tests

Replies: 4

Last updated: 1 December 2022

Taken Off Of SPRYCEL for two weeks Low white blood Counts
by Rayyana123 (Dec 1)

Thank you for responding! I have been on Sprycel for about six months. Its weird to me that it drop so low from the 75,000 . Now it is 3.26 and my doctor is giving me Neupogen innjections next week

by Rayyana123 (Dec 1)

Thank you for responding! My WBC is continuing to lower it is around 3.26 since I have been off medicine for a month. Now my doctor wants to put me on Neupogen to build my WBC back up. I am

by MartinZA (Nov 14)

Hi Rayyana123
I've been taken off my TKI (imatinib) for almost three months now because it was lowering all my blood counts (white, red and platelets). My situation is unusual because this

by ipmaki (Nov 9)

Hi Rayyana123. I've experienced WBC's on the order of 3 K/uL in the past on 100mg of Sprycel. The medication has always suppressed my WBC's and it tends to fluctuate somewhere
Category: Blood tests

Replies: 4

Last updated: 1 December 2022
StayStrong3916 on 1 December 2022

Category: Uncategorised

Replies: 3

Last updated: 1 December 2022

100mg Sprycel Too Aggressive?
by jmonzione (Dec 1)

I did great on sprycel but never made it to undetectable. I made it to MMR after one year of diagnosis (this is considered optimal therapy) and have stayed there with 2 blips. My situation is a bit

by StayStrong3916 (Dec 1)

Thank you for the response.
Did your numbers improve while on sprycel 100mg?
Are you still on it or did you eventually have to change TKI?

by jmonzione (Dec 1)

Don’t be scared but also ask questions! I took sprycel at 100mg for several years without issue. Some people are hyper sensitive to sprycel but many are not. I actually had more problems with

by StayStrong3916 (Dec 1)

I came across one of @scuba posts regarding DROPPING sprycel dosage to 20mg. His reasoning is that sprycel can suppress the body's own immune system to combat cml. This made a lot of sense to me
Category: Uncategorised

Replies: 3

Last updated: 1 December 2022