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Buzzm1 on 3 October 2022

Category: Uncategorised

Replies: 17

Last updated: 1 November 2022

Post your CML history and ask others to comment on it ... we all may learn something.
by Sunny (Nov 1)

Thank you Kathy, just as you said, we have to do what we feel is right for us, and we are all different. Like you, I feel that at this point in time it is not right for me to stop treatment.
My

by Kathyp (Nov 1)

Pigeon —-You have to do what’s right for you , it took me along time to reduce my dosage( glivec) but eventually I did, not completely I’m still in 200 mg .for my mental health I

by Gian P (Oct 26)

My oncologists in September 0.119 recommended to test again in October, 0.134 and i just got my results back, so I suspect a call tomorrow, i m not sure what she could say to do, but i am a bit

by Buzzm1 (Oct 26)

Gian, in that your CML level has increased rather substantially in September and October I wouldn't recommend that you reduce your dosage at this time. If your CML level continues to
Category: Uncategorised

Replies: 17

Last updated: 1 November 2022
Abs815 on 19 October 2022

Category: Organising your life

Replies: 6

Last updated: 31 October 2022

Rubbish care in UK
by Abs815 (Oct 31)

Yes exactly! I have zero problem with locum doctors especially when they are regular locums, but your experience sounds so similar to my husband's. We've had every single one of those issues you

by alexmcpee (Oct 31)

I can relate to this since my original cml expert retired and I’ve now had 3 doctors in 2 years. I do understand the NHS predicament but to be honest I’ve had a bit of a rubbish handling

by Abs815 (Oct 20)

Hi Peter, sorry to have caused offence. May I just clarify that I am incredibly grateful for the NHS and as an NHS healthcare professional myself I know first hand how valuable the care within the

by Abs815 (Oct 20)

Thank you, that's really helpful.
Category: Organising your life

Replies: 6

Last updated: 31 October 2022
cousineg2 on 31 October 2022

Category: Side effects

Replies: 0

Last updated: 31 October 2022

Skin rash and bumbs with bosutinib
by alexmcpee (Oct 31)

This is normal for a lot of TKIs. The rash will only go when you stop or reduce dose. It’s folliculitis caused by TKI there is another name for pink spots on your skin but I can’t
Category: Side effects

Replies: 0

Last updated: 31 October 2022
Rocky Mountain Gal on 20 September 2022

Category: Treating CML

Replies: 21

Last updated: 29 October 2022

Need support from my support group
by MartinZA (Oct 29)

Hi Rocky Mountain Gal
It was my private medical aid. Although both drugs are approved here, it is unusual for a patient to move "backwards" from dasatinib to imatinib. In fact

by Rocky Mountain Gal (Oct 27)

Oh Martin, 3 months?!? Was that the process where you live or neglect of your team? I really like my doctor, but I am so frustrated that my team has been negligent. On the one hand

by MartinZA (Oct 26)

Hi Rocky Mountain Gal
Sorry to hear about all of your frustrations getting onto the nilotinib! I remember it took me almost 3 months from when the decision was taken to switch me from

by Rocky Mountain Gal (Oct 21)

This is almost comical. almost. I called the doctors office today to follow up on my prescription change to nilotinib. Oh, sorry, they say. It didn't get ordered, they say. My
Category: Treating CML

Replies: 21

Last updated: 29 October 2022
Jay_b_ce on 20 October 2022

Category: Side effects

Replies: 2

Last updated: 21 October 2022

General Advice
by Jay_b_ce (Oct 21)

Thank you Scuba. I will look in to this 👍🏼

by scuba (Oct 21)

All TKI's, but especially imatinib can lead to magnesium deficiency. Supplementing with magnesium will usually solve this problem and do so within 24 hours. Consider taking 400 mg magnesium

by Jay_b_ce (Oct 20)

Hi All,
I've not posted in here since September 2020 when I was first diagnosed with CLM. Since then medication has been going well with just the odd blip that required me to have a short break
Category: Side effects

Replies: 2

Last updated: 21 October 2022
Reilly9108 on 21 October 2022

Category: Uncategorised

Replies: 0

Last updated: 21 October 2022

Ca125
by Reilly9108 (Oct 21)

Total hysterectomy still have ca125 increasing
Category: Uncategorised

Replies: 0

Last updated: 21 October 2022
MartinZA on 17 September 2022

Category: Side effects

Replies: 11

Last updated: 20 October 2022

Update on low blood count issue
by kat73 (Oct 20)

Terrific, Martin!

by ColoradoGuy (Oct 17)

Very good news. Just keep an eye on BCR/ABL and I hope it stays at this very low level.

by David Fitz (Oct 16)

💪
That’s fantastic Martin! Thanks for updating us all, and this is great to hear. I know you’ve been through quite a scare so you deserve a bit of good news.

by MartinZA (Oct 16)

Two months since stopping the imatinib and the latest results are: Platelets 188 (normal) WBC 4.43 (normal) Haemoglobin 12.6 (normal is 13) And BCR-ABL is unchanged at 0.003 during my enforced TFR
Category: Side effects

Replies: 11

Last updated: 20 October 2022
Victoria Parker on 7 March 2021

Category: Side effects

Replies: 10

Last updated: 20 October 2022

Severe skin rash on Bosutinib
by Victoria Parker (Oct 20)

Good news about the numbers - I’m almost there. I found the side effects hideous and felt bad for complaining about it! Mad isn’t it. You’ll get there though. There

by SC (Oct 19)

Thank you so much for getting back to me - I was diagnosed nearly 4 years ago and whilst my numbers are very good - I am at zero, the side effects have been intolerable. I have been off Bosutinib

by Victoria Parker (Oct 19)

Hi, how grim for you.
no I had to come off it as it was really toxic for me. I tried Dasatinib and that made whole face swell so eventually went back on to Imatinib and seem to be doing ok on

by SC (Oct 19)

Hi, I realise you posted a year ago but i wanted to ask whether you found something to help with the side effects of Bosutinib. I have just discontinued Bosutinib because of swelling of face,
Category: Side effects

Replies: 10

Last updated: 20 October 2022
cousineg2 on 19 October 2022

Category: Clinical trials

Replies: -1

Last updated: 19 October 2022

New Tyrosine Kinase Inhibitor ELVN-001

Category: Clinical trials

Replies: -1

Last updated: 19 October 2022
TL on 18 October 2022

Category: Side effects

Replies: 1

Last updated: 19 October 2022

TKI Withdrawl
by EvaH (Oct 19)

I was in imatanib for 5 years, started TKI last November and have been having similar pain/stiffness since March.
No inflammation markers in the blood so I've decided whatever is going on the pain/

by TL (Oct 18)

I was on Tasigna for about four yrs. During that time I had bone/muscle pain in my legs. I was told it was normal and one day when I went off the drug the pains would go away.
Two years ago I went
Category: Side effects

Replies: 1

Last updated: 19 October 2022
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