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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
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
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
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
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: 5 September 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: 5 September 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