You are here

Forum

Tanya Cuffe on 13 October 2022

Category: Uncategorised

Replies: 4

Last updated: 14 October 2022

TFR or not?
by Tanya Cuffe (Oct 14)

If I’m brave enough I might be a naughty girl too! Well done my friend and good to hear from you x

by Felix (Oct 14)

Hiya,ime a naughty girl ,I reduced the dose myself, I have done all along and then told my Doc I had done it .I have taken advice from the experts off this forum because my Doc isn't a CML

by Tanya Cuffe (Oct 13)

Great hearing from you Denise! I don’t think my Haemotologist would want me do the spilt pill thing. Would like try 10mg first. Good idea;:) great to hear yr well and let’s stay in touch

by Felix (Oct 13)

Hi Tanya ,haven't heard from you for a while.I am the same as you just over 3 years undetectable and thinking of TFR after Christmas my 5 year anniversary .I reduced my dose of Dasatinib
Category: Uncategorised

Replies: 4

Last updated: 14 October 2022
scuba on 23 September 2022

Category: Uncategorised

Replies: 8

Last updated: 13 October 2022

Treatment Free Remission (TFR) Update
by Tanya Cuffe (Oct 13)

That’s awesome Scuba! Was wondering if you went TFR as last I heard from you,you were still considering, Am hoping do the same in March 2023,will be 3 years undetectable but still unsure

by mamodei (Sep 28)

Great news!

by Sunny (Sep 28)

Great news, Scuba! Thanks for the update, you really could not wish for better outcome.
My consultant suggested TFR, as I have been undetected for 3 yrs, (40 then 20 mg dasatinib), but to tell

by alexmcpee (Sep 26)

Absolutely fantastic news Scuba.
I used to say I had no interest in trying TFR however the longer I have CML under control the more confident I seem to get. Maybe one day.
All the best mate.
Al
Category: Uncategorised

Replies: 8

Last updated: 13 October 2022
Felix on 22 March 2022

Category: Side effects

Replies: 8

Last updated: 13 October 2022

TKI and Tinnitus
by Felix (Oct 13)

Hi, there is no evidence that Sprycel can cause tinnitus ,it's just a question I put out there to see if others had it too .Are you just changing to Sprycel from another TKI,what are your bloods

by tengizpine (Oct 12)

Should I be really concerned about my hearing before taking Sprycel? My hearing now is not that good, and I use hearing aids most of the time. My doctor prescribed me 100md of Sprycel, and now I

by ThomasS (Mar 30)

I never had a problem until I went on 100mg of Sprycel. It was so bad at one point I thought I was going to lose my hearing. Now on 40mg and it's so much better. I'm almost certain it was

by Felix (Mar 24)

Hi Kat ,yes I do have shoulder and neck pain too ,it's not my spine ,I have a roller and a back stretcher that I use frequently .I will check out the two conditions you suggest ,thanks
Category: Side effects

Replies: 8

Last updated: 13 October 2022
Rocky Mountain Gal on 3 October 2022

Category: Blood tests

Replies: 4

Last updated: 11 October 2022

Cost of Vitamin D test
by Rocky Mountain Gal (Oct 11)

He was VERY annoyed to find out that they wouldn't pay stating "that's ridiculous, it costs them pennies to run a vit D test". He's on it!

by Buzzm1 (Oct 3)

your doctor should be the one to argue for you.

by Rocky Mountain Gal (Oct 3)

I would be happy to pay $15, mine came back at $250. That's an out of pocket expense, hoping to get insight on how to get my insurance to pay for it.

by Buzzm1 (Oct 3)

In the U.S., a vitamin D test will likely cost you between $15 and $263.
Category: Blood tests

Replies: 4

Last updated: 11 October 2022
That Michigan Guy on 10 October 2022

Category: Uncategorised

Replies: 4

Last updated: 11 October 2022

New member. Anecdotal Covid complications…
by That Michigan Guy (Oct 11)

Thank you, Scuba. You may be spot-on, about low Vit D. I’ve not had my Vit D level tested. I was advised, by my former primary care physician, not to take more than 1,000 IU

by scuba (Oct 11)

Any bcr-abl (PCR) result less than 0.1% is excellent. In fact, any level below 1.0% achieved within 18 - 24 months is associated with a 95% progression free survival.
Consider having your vitamin D

by That Michigan Guy (Oct 11)

Thanks for the reply, David! It’s good to get some perspective of what the numbers might mean, good or bad. All the clinical websites I’ve looked at seem reluctant to say what is a

by David Fitz (Oct 11)

Hello, and welcome!
You say you have a result of IS 0.0409%. That's an optimal result, at any stage of treatment. Getting lower than that isn't corelated to better patient outcomes, so you
Category: Uncategorised

Replies: 4

Last updated: 11 October 2022
PhilipDavid on 11 May 2020

Category: Reproductive health

Replies: 6

Last updated: 11 October 2022

CML diagnosed 26/2/15. On imatinib. Advice please - low Testosterone- possible TRT therapy with cml ? Help !
by LukaBradley (Oct 11)

Hello, Philip. How’s it going now? Have you managed to solve your issue? My brother currently has a similar situation. He has an extremely low testosterone level, so I have no idea what to do

by PhilipDavid (May 11)

Alister
Many thanks for your input - quite interesting that you have been on TRT for so long - although the circumstances that dictated your treatment were not good.
The last consultation at

by AlastairC (May 11)

Hi Philip
I have been on testosterone replacement for over 30 years, and was on imatinib for 11years. I had a testicular cancer aged 30, and after that needed TRT. My CML diagnosis 20 years later is

by Buzzm1 (May 11)

Philip, please continue to keep us informed as to your onc's opinion; my own onc was staunchly against dosage reduction but I was very persistent and not taking no for an answer, after almost
Category: Reproductive health

Replies: 6

Last updated: 11 October 2022
Scout3124 on 10 October 2022

Category: Side effects

Replies: 2

Last updated: 10 October 2022

I can’t take the Pain anymore and I am sick of being ignored
by Scout3124 (Oct 10)

I am in London on sprycel, I understand the addiction issue but if a patient walks into your office with cancer and MS and says, I suffer severe pain and I need help, here are the contact

by hannibellemo (Oct 10)

Scout3124, I'm sorry to hear you are in such pain. Can you give a little more info - what TKI are you taking, how well is it working for you? I think another question is where are you located

by Scout3124 (Oct 10)

I got diagnosed in 2018 and received amazing care in Canada, when I explained I was fighting a lot of pain they immediately got me in with a pain team and gave me varying strengths of pain killers
Category: Side effects

Replies: 2

Last updated: 10 October 2022
Felix on 5 January 2019

Category: Side effects

Replies: 12

Last updated: 10 October 2022

Taking IMATINIB at night
by Roberto Madrid (Oct 10)

Dear Felix, thank you for opening this thread. I've been diagnosed two months ago and the only instruction my doctor gave me was: "take imatinib with your biggest meal". My days became horrible.

by David Fitz (Jan 7)

I hope it does help. But going back to the half-life bit, it takes just under 24 hours for 50% of the imatinib to clear your system. Another 24 hours for it to go down by 25% (by which time you'

by Felix (Jan 7)

Hi David ,thank you so much for your advice I will do that .Whether it makes any difference or not to the fatigue I can but try . .Here's Hoping .Thanks again ,Denise.

by David Fitz (Jan 7)

The half life of imatinib is almost 24 hours, so you don't need to stagger it over a few days really.
If I were you, I would take it at 10am tomorrow and then 6pm the next day and you'
Category: Side effects

Replies: 12

Last updated: 10 October 2022
Karinne on 9 October 2022

Category: Uncategorised

Replies: 5

Last updated: 9 October 2022

4 years in TFR!!!
by Karinne (Oct 9)

Thanks Buzz. I remember all your advice. Kudos to 6 years!!!

by Karinne (Oct 9)

Thanks Pat. Hope that you are doing well too.

by Buzzm1 (Oct 9)

I'm happy for you Karinne. I remember you beginning TFR.
I'll test again this week, marking six years TFR for me.
Feels great not to be taking a TKI.
Buzz

by hannibellemo (Oct 9)

That is great news, Karinne!
Category: Uncategorised

Replies: 5

Last updated: 9 October 2022
Buzzm1 on 4 October 2022

Category: Uncategorised

Replies: 4

Last updated: 7 October 2022

Just another COVID experience.
by Buzzm1 (Oct 7)

Thank you David. ... Kaiser has now apparently determined that constantly balancing blood sugar makes medications more effective and so everyone gets finger sticks 3-4 times a day. Found

by David Fitz (Oct 5)

That’s great - I’m pleased to hear you are on the up! Hope you get back to full-speed soon.
David.

by Buzzm1 (Oct 4)

Thanks for asking David; Im feeling exponentially better every day.
Still have some work to do to get out of the woods, so to speak, but I'm hugely optimistic.
My pacemaker is keeping me

by David Fitz (Oct 4)

How are you feeling now?
Category: Uncategorised

Replies: 4

Last updated: 7 October 2022
Tedro on 25 September 2022

Category: About CML

Replies: 4

Last updated: 4 October 2022

what measures determine chronic phase to accelerated phase?
by Tedro (Oct 4)

Thank you

by EvaH (Oct 4)

WBC has little to do with blast vs chronic. Very high counts and an enlarged spleen can be indicative of blast crisis but its not the determining factor, as far as i remember the hematologist

by Tedro (Sep 26)

Thank you.
I wanted to see if WBC had anything to do with it.

by hannibellemo (Sep 26)

Hi, Tedro. From the LLS CML Phases and Prognostic Factors:
In the accelerated phase, the number of immature blast cells has risen, and sometimes new chromosomal changes, in addition to the Ph
Category: About CML

Replies: 4

Last updated: 4 October 2022
Taper11 on 3 October 2022

Category: Blood tests

Replies: 0

Last updated: 3 October 2022

FISH vs PCR Test Results
by Taper11 (Oct 3)

I've been taking 100mg Dasatinib for a little over a year. I had a 2nd bone marrow biopsy at 12 months due to two rising PCR results at 9 and 10.5 months that showed no mutations.
3 month - 2.4
Category: Blood tests

Replies: 0

Last updated: 3 October 2022
snowman 35 on 15 August 2022

Category: Blood tests

Replies: 6

Last updated: 29 September 2022

Supplements
by amarullio (Sep 29)

What tests do I take to find out what vitamins I lack in my body? Is there a possibility to get a more precise answer and not only “when you feel bad – take…” or do I just

by snowman 35 (Sep 19)

What can I say David.....

Imagine that when I asked him I was in the first days of my treatment....scared and confused....I would not drink even water if he would told me so🤪

by David Fitz (Sep 17)

Honestly, that sounds like a doctor who either doesn’t know what they are talking about or more likely finds it easier to say “no, don’t take supplements” than actually give

by snowman 35 (Sep 9)

Asked my doc at the first day if I could take protein and he told me not to because often interact with tki,but I 've read twice or three members arr taking whey protein and had no issues......
Category: Blood tests

Replies: 6

Last updated: 29 September 2022
Alan Locke on 22 September 2022

Category: Uncategorised

Replies: 3

Last updated: 28 September 2022

World cml awareness day 09-22-2022 and recommended reading
by Sunny (Sep 28)

You are so right Alan by saying we are the lucky ones, by having CML discovered early, before the darn thing could take hold. Your pill is chunky, mine is tiny, but oh the magic they work.....
Like

by Alan Locke (Sep 27)

Thank you, John for your reply.
I will look for your recommended reading. I am happy to be inspired by such books and this forum. It has such a wealth of knowledge and inspiration.
I certainly

by johnw1001 (Sep 25)

Hi Alan,
I dont know how long it has been since you were dx with CML but for me it is coming up for 16 years on that magic orange pill Givec/Imatinib-if you had this condition prior to 2001 /2002

by Alan Locke (Sep 22)

A day for reflection
A day for sincere heartfelt thanks
A day for self affirmation:
You are stronger than you know,
More positive than you ever thought possible,
And you can still LIVE
Category: Uncategorised

Replies: 3

Last updated: 28 September 2022
pai5zg on 15 June 2018

Category: Getting help

Replies: 6

Last updated: 27 September 2022

Running and CML
by ColoradoGuy (Sep 27)

Of course you can. I used to run much more a few years before diagnosis but in the last year and a half started running 5K about three times a week with some weights on other days.

by snowman 35 (Sep 27)

I do crossfit.I have started before my diagnosis and I continue since then.I have never stopped.Running is a small part of crossfit but at every workout I push my self to the limits.

The only

by EvaH (Sep 27)

Don't understand why treadmills are safer than outdoor.
Outdoor is much better for you..

Run and excercise as much as you can .
As for weights, i started them again within 5 months of

by Philiptibbs (Sep 23)

I put you guys at the top of my list ! You are amazing that you keep going. I'm a bodybuilder and since I got CML I have tried to lift weights just to keep in shape but my muscles get way too sore
Category: Getting help

Replies: 6

Last updated: 27 September 2022
Vikram on 22 September 2022

Category: Uncategorised

Replies: 7

Last updated: 27 September 2022

Expired date of IMTANIB
by EvaH (Sep 27)

Yes, it's safe
Others have confirmed this already. Stop making drama and use your pills, they are fine.
Keep all medications cool if you can, this has much more impact than exipiry dates.

by Vikram (Sep 27)

Any disadvantages???

by Vikram (Sep 25)

My IMTANIB is free...( Free Program)
Last 10 year IMTANIB 1 year before expire
But this time only 1 and half month...

by scuba (Sep 25)

Imatinib mesylate is basically a salt. ... meaning it has strong chemical bonds making it quite stable as long as it is "dry".
As such, it is going to last a long time if kept in the
Category: Uncategorised

Replies: 7

Last updated: 27 September 2022
cousineg2 on 26 September 2022

Category: Clinical trials

Replies: -1

Last updated: 26 September 2022

Nordic clinical trial opens the door to a cure for a blood cancer

Category: Clinical trials

Replies: -1

Last updated: 26 September 2022
vonnie on 25 September 2022

Category: Uncategorised

Replies: 0

Last updated: 25 September 2022

Possible side effects from imatinib
by vonnie (Sep 25)

Hi all. I'm after some advise again please. As previously mentioned I have been taking Imatinib since my diagnosis of CML for the past 5 years. Over recent months I have experienced 2 infections
Category: Uncategorised

Replies: 0

Last updated: 25 September 2022
izhamredza on 14 August 2020

Category: Drug-drug interactions

Replies: 11

Last updated: 23 September 2022

Taking minoxodil and finasteride for hair loss
by steven7 (Sep 23)

Hi John,
I am taking Dasatinib with 50 mg per day. How's your dosage of Dasatinib? Is there any difference you can tell with the addition of Finasteride?
Thanks,
Steven

by JohnFromChicago (Aug 25)

I have heard of it somewhere although I can not remember where. I have also heard the other way around of compounding pharmacies making a topical finasteride+minoxidil+ketoconazole (thought to

by kat73 (Aug 25)

Interesting discussion about minoxidil. Is anyone familiar with taking the oral pill? I just read a New York Times article (8/22?) about dermatologists using a tiny, tiny amount of

by JohnFromChicago (Aug 23)

I use minoxidil (Kirkland brand), finasteride and microneedle my scalp once a week. Im on Dasatinib and my doctor was ok with me taking finasteride. I was able to make drastic improvements from
Category: Drug-drug interactions

Replies: 11

Last updated: 23 September 2022
Damian Gabilondo on 22 September 2022

Category: Uncategorised

Replies: 0

Last updated: 22 September 2022

Variability by number of copies of PCR
by Damian Gabilondo (Sep 22)

Dear I need some wisdom in relation to the Number of Copies affect the result, because I received my last PCR RM 4.5, the same response of the last exams, with a sample of very few copies (57500
Category: Uncategorised

Replies: 0

Last updated: 22 September 2022