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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
MartinZA on 2 August 2025

Category: Treating CML

Replies: 0

Last updated: 2 August 2025

TFR continues but liver function test abnormal
by MartinZA (Aug 2)

Hi everyone
I'm thrilled to report that after 3 years of my involuntary TFR attempt, I am still doing well with my latest PCR test showing BCR-Abl of less than 0.003%. However, my doctor is
Category: Treating CML

Replies: 0

Last updated: 2 August 2025
scuba on 14 May 2025

Category: Uncategorised

Replies: 16

Last updated: 1 August 2025

TFR report May 2025
by scuba (Aug 1)

If for any reason you lose TFR, consider switching to a different TKI (e.g. dasatinib low dose 20mg or Nilotinib low dose).
Switching TKIs After TFR Failure

Limited studies have specifically

by David787 (Aug 1)

Many thanks Scuba,
Imatinib is/was my TKI. Almost took them today by accident!

by scuba (Jul 31)

All the best on your TFR attempt!

What TKI are you stopping?

by David787 (Jul 31)

Interesting read, thanks Scuba.
Well today I embark on TFR, having been on dose reduction for a year and undetectable for over two years.
🤞🤞
Category: Uncategorised

Replies: 16

Last updated: 1 August 2025
Felix on 31 July 2025

Category: Uncategorised

Replies: 0

Last updated: 31 July 2025

Trying TFR
by Felix (Jul 31)

Hello, hope everyone is well.I recently had surgery and was told to stop Dasatinib for a few weeks .I haven’t restarted yet to see if I could try TFR been off for 9 weeks .My bloods have just come
Category: Uncategorised

Replies: 0

Last updated: 31 July 2025
Jacqueline Allmark on 28 July 2025

Category: Side effects

Replies: 1

Last updated: 30 July 2025

extreme fatigue of rapid onset, sweating, collapse
by PhilipDavid (Jul 30)

Hi. I have these attacks and they are due to my type 2 diabetes. Get your blood sugars checked out.

by Jacqueline Allmark (Jul 28)

I was diagnosed with CML 2019 mostly okay on Imatinib 300mg daily good response However I suffer from the above symtoms occasionally but last nignt I had an exteme episode.I was just watching
Category: Side effects

Replies: 1

Last updated: 30 July 2025
rambler on 29 November 2024

Category: Uncategorised

Replies: 26

Last updated: 29 July 2025

Blast crisis
by JoeP (Jul 29)

Good news Paul. You are Iron Man fueled by Ponatinib enjoying life. Your story gives us all hope. For once I hear something positive about Ponatinib. I’ll probably end up trying it out or relying on

by rambler (Jul 29)

Hi Joe, thanks for your earlier message,

Hope all is ok with you.

I spoke with my consultant the other day and he was very happy with how things are going. He was surprised how

The

by JoeP (Jul 6)

Rambler the gods are toying with you. They are throwing you into a whirlwind to keep your blood flowing and your system primed for action. I’m eager as I’m sure you are to see where your next

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
Category: Uncategorised

Replies: 26

Last updated: 29 July 2025
scuba on 8 February 2024

Category: Uncategorised

Replies: 2

Last updated: 29 July 2025

Shiitake Mushrooms ...
by Monacomer (Jul 29)

I had the same question, so I dug around and found that shiitake mushrooms are often fine in moderation unless your doctor specifically advises against them. I’ve also been trying to support my

by healthyhabits (Feb 8)

I believe it. Mushrooms are crazy. Thank you for sharing!

by scuba (Feb 8)

https://www.healthday.com/healthpro-news/conditions/shiitake-mushroom-in...
"The researchers observed increased ex vivo proliferation of γδ-T cells and natural killer (NK) T-cells (60 percent and
Category: Uncategorised

Replies: 2

Last updated: 29 July 2025
johnw1001 on 25 July 2025

Category: Organising your life

Replies: 2

Last updated: 25 July 2025

Drug shortages-imatinib
by johnw1001 (Jul 25)

Hi,

I think that the larger and the big research units/cancer centres may well have assured supply routes but the smaller NHS trusts may well face some issues in the next six months

by PhilipDavid (Jul 25)

Hi. John.
Thank you for update. I am with Hammersmith hospital no reports of shortages to. It is a worry has these drugs are essential.

by johnw1001 (Jul 25)

Hi All,

I came across this

"There are ongoing shortages of imatinib .............................Several manufacturers including Teva and Upsher-Smith have reported back orders or
Category: Organising your life

Replies: 2

Last updated: 25 July 2025
Zzyzxuk on 4 June 2025

Category: Side effects

Replies: 1

Last updated: 24 July 2025

Dasatinib - tolerated it for four years, but suddenly now makes very VERY nauseous
by hannibellemo (Jul 24)

I was on dasatinib from 2009 to 2019. I also experienced bouts of nausea occasionally. I've been through so many side effects from the 3 TKIs I've been on, I just figured that was another. It didn't

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: 1

Last updated: 24 July 2025
scuba on 3 September 2022

Category: Uncategorised

Replies: 3

Last updated: 23 July 2025

Curcumin vs. Aspirin vs. Ibuprofen
by Giaseven (Jul 23)

I switched from ibuprofen to curcumin a while ago because I wanted something gentler on my stomach. This post helped me a lot: https://secrets.shop/blogs/top-herbs-for-every-need/turmeric-the-golden

by hannibellemo (Sep 7)

Interesting post, John. I tried curcumin at the level Scuba suggested several years ago and immediately had a large, painful eye bleed - I think I was on dasatinib at the time - I haven't tried

by johnw1001 (Sep 5)

Hi Scuba,
Perhaps it would be wise to consider each of the parameters inflammation,blood thinning,oxidative stress and cancer prevention in the context of one who has for whatever reason been

by scuba (Sep 3)

https://drjosephmillerobgyn.com/curcumin-vs-aspirin-vs-ibuprofen-rx-nsaids/
Category: Uncategorised

Replies: 3

Last updated: 23 July 2025
johnw1001 on 22 July 2025

Category: Side effects

Replies: 2

Last updated: 23 July 2025

Any updates on generic imatinibs
by johnw1001 (Jul 23)

Thanks for the information -useful

Apparently the excipients are different which is the coating and the core(or packing)

In addition one was an alpha formulation -the other a beta

by PhilipDavid (Jul 23)

Hi.
I was switched from Glivec after 5 years to a generic- TEVA. The only thing I can report is it harder on the stomach- aggravating my ongoing acid reflux issues which coincide with me

by johnw1001 (Jul 22)

Hi there,

I have posted before on generics but would welcome any updates you may have -especially from UK

I have been on imatinib for 18 years and initially branded Glivec then Sandoz
Category: Side effects

Replies: 2

Last updated: 23 July 2025
sb22 on 17 July 2025

Category: Uncategorised

Replies: 0

Last updated: 17 July 2025

nilotinib and stroke risks
by sb22 (Jul 17)

Nilotinib has been associated with increased risk of peripheral artery disease (PAD), 1–3 coronary artery disease, and cerebrovascular events. 4–6 We present the cases of 3 patients who experienced
Category: Uncategorised

Replies: 0

Last updated: 17 July 2025
tylerg242 on 6 August 2020

Category: Uncategorised

Replies: 4

Last updated: 16 July 2025

Testosterone
by Giaseven (Jul 16)

I had similar issues and found out that low testosterone was part of the problem after starting treatment. I went through blood tests first, and my doctor eventually prescribed TRT. I’ve been using

by PhilipDavid (Aug 10)

Hi
I was diagnosed with very low testosterone some 15 months ago - I am on Gleevec 400 mg per day
I started TRT therapy some 3 months ago - 40 mg per day - I have had my first

by AlastairC (Aug 7)

I too had testicular cancer, and am on Nebido injections every 12 weeks for testosterone. Never had a problem with it, other than convincing the doctors that one liver function test every 6

by Stuart Johnston (Aug 7)

Hi I am on imatinib 400mg for cml, also had testicular cancer as well. I am know using testogel daily with no adverse effects. Plus other mens for other conditions

Hope it helps
Category: Uncategorised

Replies: 4

Last updated: 16 July 2025
Kathyp on 11 July 2025

Category: Uncategorised

Replies: 3

Last updated: 14 July 2025

Prickly skin,
by Kathyp (Jul 14)

Hi Theresa I know Ive been extremely lucky that glivec has worked so well for me x

by cmljax (Jul 14)

Sounds like this could be neuropathy, which I have had for 3 or 4 years now. Gabapentin helps with these symptoms as does further dose reduction if possible I've been on TKI's almost 9 years now -

by Mag74 (Jul 14)

Hi Kathy, that’s amazing 21 years! I was just diagnosed in February 2025. Was on Imatinib (Gleevec) for 3 months then on Dasatinib (Sprycel) since. My BCR ABL was at 25% but I believe I am beyond

by Kathyp (Jul 11)

Morning all. Hope everyone is doing well!
Hi, been on glivec now for 21 years and I’ve had lots of side effects over the years , but I’m now experiencing prickly burning skin on my hands feet face
Category: Uncategorised

Replies: 3

Last updated: 14 July 2025
bonarhere on 8 April 2024

Category: Organising your life

Replies: 8

Last updated: 11 July 2025

How to cope with anxiety before/after physician visits
by Wstevenson (Jul 11)

You are definitely not alone. Some ideas/ things that have helped for me:

-Schedule a fun activity for the day you think you'll be most anxious. It will keep your mind off of the worry.

by Melloworac (Jul 7)

I always get anxious before appointments too. What’s helped me is journaling how I feel right after visits—that way I remember the positives for next time. I also followed a few people online who’ve

by snowman 35 (Apr 11)

Pojo

I take sprycel.I tried tfr in June of 2022 but in 2 months my bcr abl was 0.014 so I started my treatment again.I will try one last time in 3 years from now

by JoeP (Apr 10)

Snowman what drug brought you to undetected? I am assuming you are in TFR. Is that the case?
Category: Organising your life

Replies: 8

Last updated: 11 July 2025
cmljax on 10 July 2025

Category: Uncategorised

Replies: 0

Last updated: 10 July 2025

Insertional Hamstring Tendinosis
by cmljax (Jul 10)

I was just diagnosed with this through an MRI. This is tendinosis (degeneration of the tendon tissue versus tendonitis (inflammation of the tendon tissue.) Note this is where the hamstring tendon
Category: Uncategorised

Replies: 0

Last updated: 10 July 2025
Kimberly Stuart on 4 July 2025

Category: Children & young people

Replies: 1

Last updated: 6 July 2025

Going Treatment free to try for Pregnancy
by David Fitz (Jul 6)

Kimberly,
I am wishing you the very best of luck with this!
Being a mummy with CML is not easy, but it sounds like you have great advice
Here we have excellent access to the best in the world about

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: 1

Last updated: 6 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