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David Fitz on 17 August 2025

Category: Uncategorised

Replies: 2

Last updated: 20 August 2025

PinnedHaving technical issues with the CML Support site? Please get in touch.
by David Fitz (Aug 20)

Hi David,
So I just got an email alert to tell me this thread has been updated, so clearly the functionality is working in general. Just not for you, for some reason!
Can you open your profile on

by David787 (Aug 20)

Hello David,
As per our previous discussion I am still not receiving notifications by email of replies or additions to forum subjects that I am subscribed to.
For example the two replies I have had

by David Fitz (Aug 17)

I have had a few reports of user sign-up process not working for some people, and other small issues like subscribed topics not sending an email to people subscribed to it.
It’s quite hard to track
Category: Uncategorised

Replies: 2

Last updated: 20 August 2025
scuba on 8 February 2024

Category: Uncategorised

Replies: 4

Last updated: 22 August 2025

Shiitake Mushrooms ...
by scuba (Aug 22)

Interesting .... this was new for me to learn! I eat shiitake mushrooms very often (anti-cancer) since learning about AHCC (present in Shiitake's).

I need to be sure my shiitake's are cooked

by EvaH (Aug 22)

I had an outbreak of shitake flagellitis while on tkis, a rare but harmless reaction to undercooked shitake mushrooms.
If you develop a rash that starts to look demonic after a few days... That's

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!
Category: Uncategorised

Replies: 4

Last updated: 22 August 2025
Patch on 14 March 2025

Category: Uncategorised

Replies: 1

Last updated: 22 August 2025

cataract surgery & Teeth removal
by EvaH (Aug 22)

I have two wisdom teeth removed while on TKIs
I also had a leukemia related rentinal issue and had multiple injections of avestin as well as imagining in the year after diagnosis. Its not the same

by Patch (Mar 14)

Hi,

I wonder if anyone else has come across any of these problems..

I recently went along to have my eyes tested at Boots the chemist and was informed I need to have cataract's in both
Category: Uncategorised

Replies: 1

Last updated: 22 August 2025
Kamil on 18 May 2022

Category: Food & fitness

Replies: 8

Last updated: 22 August 2025

Vitamin D and other supplements
by EvaH (Aug 22)

Random info which maybe of use to someone:

I started supplements of vitD after a looong pause. After one month of 5000 UI daily , i achieved a blood level of 60 ng/ml.

I'm reducing to

by Giaseven (May 15)

I've been taking a good multivitamin and vitamin D regularly, and it seems to help with my energy. For sleep, I looked into natural sleep aids for athletes because I train a few times a week and

by Felix (May 21)

Hi, try Nutravita for all your vitamins in the UK ,they do a good Curcumin.They are an amazing company to deal with ,great prices ,and occasional freebies .Open an account on their main site

by scuba (May 20)

Yes - Arms shoulders legs can do it, but back is best. And amount of time. Lying flat in the sun at the beach at noon in summer for about 20 minutes can provide plenty of vitamin D.

https://www.
Category: Food & fitness

Replies: 8

Last updated: 22 August 2025
scuba on 14 May 2025

Category: Uncategorised

Replies: 19

Last updated: 22 August 2025

TFR report May 2025
by EvaH (Aug 22)

I had a similar blip between 3 and 6 months after i stopped imatanib...it scared the bejeepers out of me. But it was just once and I'm TFR since Nov 2021.

by EvaH (Aug 22)

I had a similar blip between 3 and 6 months after i stopped imatanib...it scared the bejeepers out of me. But it was just once and I'm TFR since Nov 2021.

by David787 (Aug 12)

That’s most interesting. I understand that the biggest risk period after starting TFR is the first three months-hence, obviously, the monthly blood tests.
Currently keeping fingers crossed that I

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
Category: Uncategorised

Replies: 19

Last updated: 22 August 2025
snowman 35 on 21 August 2025

Category: Treating CML

Replies: 0

Last updated: 21 August 2025

Bottle of the pills not sealed
by snowman 35 (Aug 21)

Hi everyone.

Today I opened a new bottle of sprycel and I noticed that it was not sealed as always(with something like aluminum foil).

Has anyone noticed that?Is it ok to take the pills
Category: Treating CML

Replies: 0

Last updated: 21 August 2025
David787 on 12 August 2025

Category: Organising your life

Replies: 3

Last updated: 20 August 2025

TFR and Travel Insurance
by David787 (Aug 20)

Thanks chaps for your comments and help! I shall report further when I come up for my renewal in a few months.

by Felix (Aug 19)

I was honest and declared it on mine recently ,along with other health issues .It wasn’t very expensive at all .Get quotes off a few because the prices are so different .Tui was very expensive I

by David Fitz (Aug 17)

That’s probably about right. If you spoke to them on the phone, you’d find out that they are mainly interested in if you are currently undergoing chemotherapy. Which of course is a difficult

by David787 (Aug 12)

Once one has started TFR and has undetectable BCR ABL, what do folk declare to their Travel Insurance company? No CML, in remission, cured??
If anyone has any experience with this I should be most
Category: Organising your life

Replies: 3

Last updated: 20 August 2025
JayC on 6 August 2025

Category: About CML

Replies: 3

Last updated: 18 August 2025

Long Term Fasting
by Mia (Aug 18)

Look up, Professor Valter Longo PhD, he is a fasting expert located in Southern California. I believe he’s connected to the Keck school of medicine at USC in Los Angeles . one of his books is

by JayC (Aug 7)

Can’t see where fasting would be snake oil as no one makes any money from it. There is nothing sold. It’s just using the energy the body normally uses for digestion for healing instead.

by PhilipDavid (Aug 7)

Hi jay. Read John diamonds book. It’s called “ snake oil and other preoccupations “. Trust in proven science and western medicine before going down the fasting route. It don’t work my friend.

by JayC (Aug 6)

Diagnosed with CML in 2012, been on Sprycel since 2013. Deep down, I've always believed there is a way to cure any disease unless you are literally on death's door. Over the past four years, I've
Category: About CML

Replies: 3

Last updated: 18 August 2025
kat73 on 9 August 2025

Category: Uncategorised

Replies: 2

Last updated: 18 August 2025

Could Scemblix think coffee is water?
by kat73 (Aug 18)

Thanks so much, David! I will pitch it again to my onc. This gives me some ammo. You may remember (or not!) I was a long ago emigre from the US LLS site, when they redesigned their site to be

by David Fitz (Aug 17)

You absolutely can!
The main thing is steering clear of calorific content. So a black coffee is absolutely fine with asciminib (I’ve had this confirmed with a specialist CML pharmacist in the UK).

by kat73 (Aug 9)

Hi, everybody. Starting Scemblix and I'm having a devil of a time figuring out when I can fit the fasting part in my day. I started out taking it at bedtime, but sometimes we eat dinner late and
Category: Uncategorised

Replies: 2

Last updated: 18 August 2025
MartinZA on 2 August 2025

Category: Treating CML

Replies: 5

Last updated: 9 August 2025

TFR continues but liver function test abnormal
by kat73 (Aug 9)

I think it was the wedding! Glad to hear of your continuing TFR.

by kat73 (Aug 9)

I think it was the wedding! Glad to hear of your continuing TFR.

by MartinZA (Aug 3)

Hi PhilipDavid
Thank you - I have also heard that imatinib can be hard on the liver, but it didn't ever affect mine. Nevertheless, I agree with everything you've said and have completely stopped

by MartinZA (Aug 3)

Hi Joe
Thank you for the reply, and I think what you said is spot on - I am grateful to be in good shape and you're so right that we can be oversensitive. Much of the CML battle is fought in the
Category: Treating CML

Replies: 5

Last updated: 9 August 2025
Smurf42 on 21 November 2014

Category: Side effects

Replies: 4

Last updated: 7 August 2025

Testosterone levels in male CML patients
by snowman 35 (Aug 7)

What type of testosterone do you use?Cream or injections?

I am planing to check my testosterone level and I am thinking if I have to take testosterone, are there any interactions with tki....I

by aseli100 (Jun 14)

If not yet solved the problem : as a cml patient used Testosterone suplamentation due to hypogonadism resulted most probably from treatment . it works! you may get plenty of information by joining

by Smurf42 (Dec 15)

Thankyou Sandy
I'm finding it really difficult to find answers but I will certainly investigate the adrenal fatigue information. Thankyou for your answer :-)

by sandy craine (Nov 23)

Supplementing with hormones -particularly with testosterone- is a difficult area to advise on as there are many effects (some quite scary) that can become an issue. I am sure long term TKi therapy
Category: Side effects

Replies: 4

Last updated: 7 August 2025
sb22 on 17 July 2025

Category: Uncategorised

Replies: 1

Last updated: 6 August 2025

nilotinib and stroke risks
by Tanya (Aug 6)

Hi, I appreciate your post on Nilotinib - I have pushed my doctor to change to another tki. I'm starting with Dasatinib.
Among other side effects I was constantly fighting with breathing normally,

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: 1

Last updated: 6 August 2025
Felix on 31 July 2025

Category: Uncategorised

Replies: 2

Last updated: 3 August 2025

Trying TFR
by Felix (Aug 3)

Hello Martin ,thank you so much for replying to me and for all your advice ,much appreciated .I feel so much better off the meds at the moment so ime hoping I can stay off .🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻

by MartinZA (Aug 3)

Hi Felix
I'm not a doctor, but I had to try TFR because of intolerable side effects from both dasatinib and imatinib, and here is what was done with me:
In the first six months, I had monthly BCR-

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: 2

Last updated: 3 August 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
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
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