You are here

Forum

David Fitz on 9 June 2025

Category: Treating CML

Replies: 0

Last updated: 9 June 2025

PinnedVideos and slides from CML Horizons 2025 now available
by David Fitz (Jun 9)

We’re excited to announce that the videos and presentations from CML Horizons 2025 are now available! Whether you were with us in person, joined virtually, or couldn’t attend this year, now is the
Category: Treating CML

Replies: 0

Last updated: 9 June 2025
rambler on 29 November 2024

Category: Uncategorised

Replies: 23

Last updated: 5 July 2025

Blast crisis
by rambler (Jul 5)

Hello Hannibellemo,

Many thanks for your reply.

Yes I am a bit surprised too about the BCR-ABl test not being accurate. At least they could do another test at some stage.i am going to be

by hannibellemo (Jun 29)

Hi, Rambler, I'm surprised at your last text. PCR for Bcr/Abl is generally considered to be very accurate. I, personally, would not want to rely just on blood tests. Sometimes there are problems

by rambler (Jun 21)

Hello,

I am writing this time about some recent BCR -ABL results. About four weeks ago I got a reading of 0. Two weeks later the result was 76. They said it was an erroneous result. The latest

by JoeP (Jan 16)

Nice! That’s good news for all of us.
Joe
Category: Uncategorised

Replies: 23

Last updated: 5 July 2025
Kimberly Stuart on 4 July 2025

Category: Children & young people

Replies: 0

Last updated: 4 July 2025

Going Treatment free to try for Pregnancy
by Kimberly Stuart (Jul 4)

Hi,
I had a call with my consultant this morning, we discussed at my appointment last month about going treatment free so I can try for a baby, he had said he was happy for this but wanted to
Category: Children & young people

Replies: 0

Last updated: 4 July 2025
Karinne on 27 June 2025

Category: Uncategorised

Replies: 10

Last updated: 2 July 2025

TFR for 7 years
by Karinne (Jul 2)

I guess you found a compromise that works for you.

Take care 😁

by hannibellemo (Jul 2)

Great, thanks for asking. I'm still on low-dose Tasigna (150 mg) per day. My onc and I agree that repeat TFR is not on the table for me in the foreseeable future. but I can live with this. Literally

by Karinne (Jun 29)

Thanks Pat. How are you doing?

by hannibellemo (Jun 29)

Wonderful, Karinne! So happy for your success!
Category: Uncategorised

Replies: 10

Last updated: 2 July 2025
Sd on 2 May 2021

Category: Side effects

Replies: 9

Last updated: 2 July 2025

Thoughts on CBD and Drug Holidays
by JoeP (Jul 2)

In late May and early June of this year I went on a gummi spree to help me sleep and relax. I’m in the states and the gummies here can be quite potent. After about a 2.5 week stretch of taking a

by Giaseven (Jul 1)

I tried CBD early on during treatment for sleep and nausea, but it didn’t do much for me. Recently I’ve been looking into Bulk delta 8 distillate, which some folks say gives similar chill-out

by JaylonAndersen (Jun 5)

Rich evidence has shown that cannabis products exert a broad gamut of effects on emotional regulation. The pathological expression of anxiety leads to enduring emotional perturbations with a

by EvaH (Jun 9)

I did have a cbd latte once, it made me feel a bit anxious but i think that was my specific reaction to cbd+caffeine and nothing to do with imatanib
Category: Side effects

Replies: 9

Last updated: 2 July 2025
Mick E on 2 February 2022

Category: Treating CML

Replies: 16

Last updated: 29 June 2025

Low dose Nilotonib
by hannibellemo (Jun 29)

Thanks for catching those incorrect dates, Colorado Guy.! It should have read 2020 and 2022.

by ColoradoGuy (Jun 17)

I think you have your dates wrong about nilotinib. 2010 and 2012?

by hannibellemo (May 23)

Hi, Mick E. I've maintained CMR for over 3 years on nilotinib 150mg daily. I was dxed in 2008. I developed liver toxicity on imatinib immediately. Went on dastinib in 2009 and had effusions off and

by Sav_5 (May 15)

You are welcome Gian! I cross my fingers for you and hope to read soon good news and keep enjoying a small glass of wine!! Keep us informed! Thank you.
Category: Treating CML

Replies: 16

Last updated: 29 June 2025
Agile on 27 November 2021

Category: Other conditions

Replies: 4

Last updated: 27 June 2025

CML and Dental Issue
by Monacomer (Jun 27)

My dentist was cautious too because of my CML meds and how they might affect healing. I ended up seeing someone who really understood both complex dental stuff and overall health issues—Dr. Gross in

by (Feb 10)

Broken, crooked, missing teeth in the front do not add to our attractiveness and repel people from us. That's why we try to smile as little as possible and not show our front teeth. That's

by MiguelLucas (Feb 10)

What serious dental problems have you encountered?

by thomas.c (Nov 27)

Dear Amit,

I had multiple wisdom teeth extractions, they were all in bad shape, and a piece of my jaw bone had to come with them. It wasn’t fun, but CML didn’t interfere with
Category: Other conditions

Replies: 4

Last updated: 27 June 2025
suvankardas on 21 June 2025

Category: Organising your life

Replies: 0

Last updated: 21 June 2025

Cardiovascular health on IMATINIV
by suvankardas (Jun 21)

2 years on IMATINIV 400. Detected at the age of 42 I have been experiencing all the possible side effects . But now I feel my heart has taken toll. Now-a-days the rapid heartbeat and pressure
Category: Organising your life

Replies: 0

Last updated: 21 June 2025
JoeP on 20 June 2025

Category: Drug-drug interactions

Replies: 0

Last updated: 20 June 2025

Anybody taking generic Nilotinib
by JoeP (Jun 20)

This month I was informed that my healthcare provider will start using generic Nilotinib. To be honest I didn’t think the generic was going to be yavailable until sometime near the end of the decade
Category: Drug-drug interactions

Replies: 0

Last updated: 20 June 2025
PhilipDavid on 11 June 2025

Category: Getting help

Replies: 5

Last updated: 17 June 2025

Help and advice on surgery. Back decompression surgery. Any preparation advice please.
by David Fitz (Jun 17)

For what it's worth, I had a pretty big abdominal surgery about 10 years ago when I was on dasatinib. Everyone agreed beforehand that there was no need to stop the medication and there was no

by AlastairC (Jun 16)

I was on 200mg imatinib when I had a whole hip replacement 3 years ago. I was advised to stop taking the tablets a week before the op, and didn't restart for 4 weeks while I was having anticoagulent

by JoeP (Jun 14)

Yes good luck Philip. I took a few days off for some oral surgery while on Imatinib. You should be fine, keep your oncologist in the loop.
Joe

by PhilipDavid (Jun 12)

Thank you for info. Philip London
Category: Getting help

Replies: 5

Last updated: 17 June 2025
jriccoboni on 2 June 2025

Category: Treating CML

Replies: 9

Last updated: 16 June 2025

TFR question
by jriccoboni (Jun 16)

Interesting. Maybe the lab that my Doc uses just does not show my those details. Maybe he can see it on his end.

by JoeP (Jun 15)

I found this:

The p210 and p190 in the context of BCR-ABL1 refer to different protein isoforms produced by the fusion of the BCR and ABL genes. The e13a2 and e14a2 transcripts are associated

by jriccoboni (Jun 10)

My last report said this
p210 Value (BCR-ABL): Your value is Positive. p210 BCR-ABL1 fusion transcripts detected.
International Scale <0.0030
Method:

Xpert BCR-ABL1 Ultra utilizes real-

by JoeP (Jun 6)

Just look for e13a2 or e14a2 on your PCR report. For years I never paid attention to them.
Category: Treating CML

Replies: 9

Last updated: 16 June 2025
Justine on 12 June 2025

Category: Treating CML

Replies: 3

Last updated: 16 June 2025

TFR journey begins
by Sav_5 (Jun 16)

Justine, my best wishes for remaining out of the TKIs!! Good luck!
Savvas

by AlastairC (Jun 16)

Justine, best wishes for your TFR. Alastair

by JoeP (Jun 14)

Good luck! Keep us updated with your progress.
Joe

by Justine (Jun 12)

Hello - Yesterday was Day 1 of my TFR journey. Diagnosed April 2017, on imatinib 400mg until around early 2023 when switched to dasatinib. Achieved Undetectable shortly thereafter. So 2 years on
Category: Treating CML

Replies: 3

Last updated: 16 June 2025
liza on 12 June 2025

Category: Blood tests

Replies: 6

Last updated: 15 June 2025

Advise on anyone who's taking dasatinib on alternate days
by liza (Jun 15)

Hey, thank you for your suggestions. Yeah I always feel in pain, as if my body is slowly breaking down. I have a very good nutritional diet, and think thats been one of the reasons I am not worse

by Felix (Jun 15)

Sorry but I think you need to change you doctor he or she is a bit of a nut job .Less is more with Dasatinib you could cope on 20 mg now I think .100 mg is far too toxic no wonder you feel bloody

by liza (Jun 15)

Hi, and thanks for your reply. I know, that's what I was thinking. I have been on remission pretty much since I started the treatment, but then was unstable again due to a liver inflammation. When I

by liza (Jun 15)

Hey, thanks for your reply, and sorry for perhaps the confusion, but what it's that since the heamatologist have found out that the 100mg dosage might be affecting the inflammation on my chest, for
Category: Blood tests

Replies: 6

Last updated: 15 June 2025
Seffy on 13 June 2025

Category: About CML

Replies: 1

Last updated: 15 June 2025

Trying to conceive
by David Fitz (Jun 15)

Hi,
It’s safe to father a child on dasatinib without interruption of therapy. This has been established for quite a few years now, and will be explicit in the ELN 2025 CML guidelines which were

by Seffy (Jun 13)

My husband has cml and he is on dasatinib. Any guidance and pre experience on how does it affect male fertility ??
Category: About CML

Replies: 1

Last updated: 15 June 2025
healthyhabits on 28 May 2025

Category: Organising your life

Replies: 2

Last updated: 8 June 2025

Have you experienced gaslighting?
by healthyhabits (Jun 8)

SO TRUE, Winnie. Thank you for sharing! I hadn't even considered the inherent bias in my gender. You gave me a new perspective on this, so I appreciate it.
Olivia

by Wstevenson (May 30)

Hi, O,

I have definitely experienced gas lighting regarding side effects, with both of the oncologists I've seen (and their fellows). Even to the point where I printed out lists of side

by healthyhabits (May 28)

Hi community, I just had a visit with my onc and was seen by her NP. I went off therapy a couple of months ago in order to freeze my eggs, and within a couple of months I was experiencing the same
Category: Organising your life

Replies: 2

Last updated: 8 June 2025
scuba on 14 May 2025

Category: Uncategorised

Replies: 12

Last updated: 6 June 2025

TFR report May 2025
by JoeP (Jun 6)

Interesting. I found a little snippet on the transcripts. See below.
B2A2=e13a2: I have this transcript also, however, my TFR did not stick.

Soon after I dropped from TFR, I found info that

by scuba (Jun 6)

b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL

by JoeP (Jun 6)

Scuba which BCR/ABL transcript do you have, e13a2 or e14a2 or e1a2? My guess it’s either e14a2 or e1a2.

by Blarn (Jun 6)

Re trisomy 8 - guess I misremembered, or confused you with someone else.
Regarding TFR, it seems like in theory doctors could test bone marrow for presence of LSCs and based on that predict whether
Category: Uncategorised

Replies: 12

Last updated: 6 June 2025
Zzyzxuk on 4 June 2025

Category: Side effects

Replies: 0

Last updated: 4 June 2025

Dasatinib - tolerated it for four years, but suddenly now makes very VERY nauseous
by Zzyzxuk (Jun 4)

I've been on Dasatinib for over four years, tolerated it very well, and don't even recall it making me ill when I first started taking it.
A few months back, I got a bit lax about taking my pills
Category: Side effects

Replies: 0

Last updated: 4 June 2025
MarkP66 on 28 May 2025

Category: Treating CML

Replies: 4

Last updated: 2 June 2025

Imatinib reduction below 400mg
by MarkP66 (Jun 2)

Thanks Alastair for sharing the links and advice.
I am definitely going to ask for the reduction at the next review
Mark

by MarkP66 (Jun 2)

Many thanks Felix for sharing
Mark

by Felix (Jun 1)

Hi, I changed from Imatinib 400 mg because of dreadful side effects and changed to Dasatinib ,took 50 mg at the start then when undetected which didn’t take very long at all I lowered to 20 mg,now I

by AlastairC (May 28)

Hi Mark
I'm 18 years into taking imatinib, starting on 400 mg after diagnosis aged 50. The thread on the link below goes through the journey of reducing to 200 mg for 12 months, then a TFR attempt
Category: Treating CML

Replies: 4

Last updated: 2 June 2025
snowman 35 on 6 September 2024

Category: Drug-drug interactions

Replies: 7

Last updated: 28 May 2025

Corticosteroids cream
by Giaseven (May 28)

I’ve had steroid creams thin my skin too, especially after long-term use on sensitive spots. What helped me was switching to something gentler and giving my skin a break in between treatments. I

by David Fitz (Sep 15)

You’ll find it in any pharmacy. Super common.

by snowman 35 (Sep 13)

Can I find this cream as a brand or they make it in the pharmacy?

by johnw1001 (Sep 12)

You could try hydrocortisone cream 1% w/w (or up to 5%) or a betnovate cream -and alternate it with the existing prescription perhaps, as constant use of the same cream day after day can lead to
Category: Drug-drug interactions

Replies: 7

Last updated: 28 May 2025
Kat82 on 15 May 2025

Category: Organising your life

Replies: 9

Last updated: 21 May 2025

Just diagnosed
by Felix (May 21)

Hi, scary at first but try not to worry .If your doctor offers you 100 ml Dasatinib please refuse it’s too high you will get headaches and could cause lung problems it’s too toxic .My doctor isn’t a

by joey (May 20)

Hi Kat,
sorry to hear you are having a difficult time but glad you have found your way to this forum. I was diagnosed in Jan 24 aged 46, with a busy full time job and with a 5 and 6 year old at the

by Kat82 (May 20)

Thanks so much, Manda! Really appreciate your response and the support. It helps such a lot to know that other people are going through a similar journey. Not sure it’s something that anyone else

by Amanda Lax (May 20)

Hi Kat, you'll get there, honestly, im nearly into a year now, have been on Imatinib, and now Bosulif, every TKI has its foibles!

Just try and take it easy, as others have said. You're here,
Category: Organising your life

Replies: 9

Last updated: 21 May 2025