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kristina on 13 January 2023

Category: Reproductive health

Replies: 3

Last updated: 23 January 2023

CML and immunity
by sandy craine (Jan 23)

Hi Kristina,
Re: high dose vitamin C.
It remains outside the mainstream accepted clinical 'arsenal' to use vitamin supplementation as a way of treating serious diseases/cancer, so I am not

by kristina (Jan 17)

Hi Sandy, thank you so much for your reply!
Luckily, I have already started vitamin D and will encourage my husband to start both vitamin D and C as well. I am also at the moment

by sandy craine (Jan 17)

Hi Katrina,
regarding your blood counts dropping below 'normal' levels: given you are only 1 month into TKI therapy you may expect this drop in blood counts. Over the coming months of

by kristina (Jan 13)

Hi everyone, thank you so much for all the repo see I got on my previous threads!
I have just finished my first month of Imatinib and my WBC are below the range and platelets are rapidly crashing.
Category: Reproductive health

Replies: 3

Last updated: 23 January 2023
Sav_5 on 7 January 2023

Category: Drug-food interactions

Replies: 3

Last updated: 18 January 2023

Tasigna and diet restrictions
by hannibellemo (Jan 18)

Hi, Savvas,
I think the original thought would be, if intolerable side effects or even the inability to afford the full dose of the drug kept one from being compliant, then perhaps a low(er) dose

by Sav_5 (Jan 18)

Hi miss Pat,
I have read about these fruits. I don't eat them except pomegranate that I used to eat every day in winter period. Right, Grapefruit inhibits CYP3A4 and may elevate the amount of

by hannibellemo (Jan 9)

Sav_5,
I've only been told to avoid grapefruit, so I do. There is a fact sheet out there that also mentions starfruit, pomegranate, Seville oranges and other similar fruits. I eat those other

by Sav_5 (Jan 7)

Hi everyone and happy new year!!

I have been on nilotinib for a year and except the three hour fasting, I knew from the beginning that should avoid grapefruit.

Are there any other diet
Category: Drug-food interactions

Replies: 3

Last updated: 18 January 2023
Wendy Turner on 11 August 2022

Category: About CML

Replies: 7

Last updated: 18 January 2023

Imatinib - why is the generic, Amarox different?
by Copey399 (Jan 18)

I keep getting these Amorox ones every couple of months so I looked them up and it sent me here. I thought, oh yes, somebody who is exactly the same as me with them ... and then realised it

by Copey399 (Oct 2)

I agree about the taste. It's really unpleasant. I couldn't tolerate the one 400mg pill but after adding them one one at a time and working up to 400mg I was doing well on 4 x

by KMH (Aug 30)

Hello Wendy,

I am currently on Imatinib. I've been given several different generic brands in the last year and a half. Dr. Reddy's, Sandoz, Teva and now Amarox. Like you, I was surprised at

by sandy craine (Aug 13)

Wendy,
you can access the patient leaflet for Amarox (Imatinib) here.
https://www.medicines.org.uk/emc/product/13519/smpc
Pharmaceutical form
Film-coated tablet: White to off-white coloured, capsule
Category: About CML

Replies: 7

Last updated: 18 January 2023
Zaccar on 24 March 2021

Category: About CML

Replies: 9

Last updated: 18 January 2023

Health insurance, employer and confidentiality
by KaiaAllison (Jan 18)

Hey there, I hear ya on not wanting to share your medical info with your employer. I know the law says you don't have to reveal it during the hiring process, but you may want to look into what

by MiloMoses (Jan 17)

Time to give this thread a bump, I guess. We've recently moved all the employers to Portland, so we'd like to know how health insurance works here. Any relevant inforamtion would be highly

by Rocky Mountain Gal (Jul 13)

Here in the US it is illegal for companies to ask. Your medical information is protected by HIPPA, but you have to read the small print.
When I was first diagnosed I took a medical leave of

by Zaccar (Apr 6)

Hey cdw500,
To me not telling your employer was the right choice. I don't know your rationale but here's mine. A Lot of people are diagnosed while in a career with a clear path or
Category: About CML

Replies: 9

Last updated: 18 January 2023
kristina on 17 January 2023

Category: About CML

Replies: 0

Last updated: 17 January 2023

intravenous vitamin c + Imatinib
by kristina (Jan 17)

Hi everyone, hope everyone is feeling good :)
I am currently on my second month of living with CML and taking Imatinib 400mg. I am considering taking IV vitamin C at higher dosage (15g +) and wanted
Category: About CML

Replies: 0

Last updated: 17 January 2023
Wendy Lewis on 8 January 2020

Category: Uncategorised

Replies: 6

Last updated: 17 January 2023

Massage/Facial
by David Fitz (Jan 17)

It’s absolutely fine. The only time I’d be hesitant would be if you were newly diagnosed and had a massive spleen.

Other than that, enjoy it!

by JeemyWolker (Jan 17)

I'm also a little afraid to massage with cml, please tell me about your experience.

by hannibellemo (Jan 9)

Wendy,
Massage away! I've had monthly massages for several years and no issues. I tried "cupping" for some reason a few years back and I had an onc appointment the next day. He asked

by Wendy Lewis (Jan 8)

Hi David, Thanks for the reply. I was diagnosed March 2019. Imatinib complete failure after first 3 months. Nilotinib has had a response, blood test was Monday just the long wait for results to come
Category: Uncategorised

Replies: 6

Last updated: 17 January 2023
MartinZA on 4 January 2023

Category: Treating CML

Replies: 8

Last updated: 16 January 2023

MR 4.5 again after almost five months off the drugs
by MartinZA (Jan 16)

Hi everyone
Thank you so much for all the wisdom and advice! Kat, I appreciate your message as you put a lot into perspective - I have a power failure in the morning of my test and wasn't

by Buzzm1 (Jan 15)

Unfortunately, the testing protocol established during the STOP Trials for the purpose of gathering meaningful statistics leads to a lot of unnecessary testing when a CML patient is not

by David Fitz (Jan 15)

Obviously not a worldwide agreement, but the BSH recommendation (following TKI discontinuation) is:
PCR monitoring should be:

Monthly for six months
Six-weekly from 7 to 12 months
Two-monthly from

by Buzzm1 (Jan 12)

Hi Martin, I just wanted to mention that it shouldn't be necessary for you to test monthly. Your PCR level is unlikely to go anywhere quickly, so testing every two months should suffice.
Category: Treating CML

Replies: 8

Last updated: 16 January 2023
Mixail on 15 January 2023

Category: Treating CML

Replies: 0

Last updated: 15 January 2023

New treatment possible
by Mixail (Jan 15)

I do not if this is allowed but new treatment possible
https://www.newscientist.com/article/2350806-experimental-crispr-techniq....
Category: Treating CML

Replies: 0

Last updated: 15 January 2023
cousineg2 on 13 January 2023

Category: Treating CML

Replies: -1

Last updated: 13 January 2023

Asciminib - Latest update

Category: Treating CML

Replies: -1

Last updated: 13 January 2023
kristina on 26 December 2022

Category: Children & young people

Replies: 4

Last updated: 11 January 2023

Low WBC on Imatinib
by MartinZA (Jan 11)

Hi Kristina
So sorry to hear about your diagnosis last year - I know it's a terrifying time and just want to reassure you that this condition is very manageable for the majority of people, as

by sandy craine (Dec 27)

Welcome to this forum,
You may find it helpful to read (and re-read) our booklet on CML and testing/monitoring. It take some time to understand this disease as well as how the various tests show

by Fernando Burbano (Dec 26)

Hola Kristina.

Yo también fui diagnósticado recientemente hace dos meses, estoy tomando imatinib de 400 mg. Hace un mes me hice un hemograma y mis niveles estaban casi normales, no me he

by An (Dec 26)

Hi,

I think it takes some time for the blood counts to stabilize, it fluctuates a bit in the initial months.
Category: Children & young people

Replies: 4

Last updated: 11 January 2023
Evie on 6 January 2023

Category: Side effects

Replies: 12

Last updated: 9 January 2023

Imatinib advice
by Evie (Jan 9)

Thank you. It’s good to hear that your side effects got better once you switched over to another tki.
I’m grateful that imatinib is working but concerned with the side effects

by hannibellemo (Jan 9)

Evie, I was diagnosed in 2008 and was only on imatinib for 9 months due to liver toxicity. However, I did have the "frog eyes" and some other unpleasant side effects - leg, foot and hand

by Justine (Jan 9)

Yes I did switch due to side effects. In addition, I talked with my hematologist about wanting to try TFR someday and he suggested I might get a more robust response with dasatinib than I had been

by Evie (Jan 8)

Thank you for response. Did you switch due to your side effects?
I have had the swelling since I started imatinib but it has got worse in the last couple of months and i also have a very bad
Category: Side effects

Replies: 12

Last updated: 9 January 2023
cousineg2 on 6 January 2023

Category: About CML

Replies: -1

Last updated: 6 January 2023

COVID-19 and CML (uptaded January 1, 2023)

Category: About CML

Replies: -1

Last updated: 6 January 2023
cousineg2 on 6 January 2023

Category: About CML

Replies: -1

Last updated: 6 January 2023

Introduction to CML

Category: About CML

Replies: -1

Last updated: 6 January 2023
cousineg2 on 30 December 2022

Category: Side effects

Replies: 3

Last updated: 4 January 2023

Did you experience hearing loss or tinnitus before or after the date of your diagnosis?
by Myrtle (Jan 4)

Really bad tinnitus for months, possibly a year prior to diagnosis. It went away with the treatment (100mg spyrcel) as did my Raynauds & cold extremities! Tinnitus free for close to 6

by MartinZA (Jan 4)

No hearing loss but a permanent feeling of "blockage" in my left ear. I've had a hearing test, checked for excess wax buildup and all is normal.
These drugs work in mysterious

by Felix (Dec 30)

I have had tinnitus for a year or so now and it’s so bloody annoying .Had CML for 5 years ,whether it’s our meds or CML itself who knows .

by Tanya (Dec 30)

Yes, prior diagnosis when my GP couldn't figure out why my blood test is so bad I had to ask for ear drops couple of times to cope with annoying tinnitus.
Category: Side effects

Replies: 3

Last updated: 4 January 2023
Reilly9108 on 18 February 2021

Category: Uncategorised

Replies: 28

Last updated: 3 January 2023

Hair thinning
by steven7 (Jan 3)

Hi,
Do you try hair transplant or consider that option?
Steven

by PeytonDoyle (Jan 2)

Hi there. I'm sorry to hear that you are experiencing hair thinning while on Sprycel. Unfortunately, it is hard to say when the thinning will stop. Each person reacts differently to medications

by Reilly9108 (Nov 3)

Sprycel causes hair loss

by melonwalen (Sep 25)

Good skin cleansing is the key to success!
Category: Uncategorised

Replies: 28

Last updated: 3 January 2023
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