You are here

Forum

SS86 on 11 April 2023

Category: Side effects

Replies: 55

Last updated: 4 November 2023

Pleural Effusion Again ! Should we change from Dasatinib to Imatinib and BCR-ABL redecteded
by hannibellemo (Nov 4)

SS86, I had one period when I had been on nilotinib for 6 months where my bilirubin doubled and my ALT went up to 58 (almost doubled). My doctor wasn't concerned with one test result and it went

by Buzzm1 (Oct 22)

TKI induced bilirubin increase:

https://www.google.com/search?q=TKI+induced+bilirubin+increase&client=sa...

by SS86 (Oct 22)

Two months on Nilotinib 300 mg BD while has reduced the Bcr abl count to .019 but the recet blood test shows an increase in bilirubin.
Upon fibroscan it shows first stage of liver fibrosis.

by SS86 (Aug 5)

Thank you so much for sharing your journey and writing these assuring words. Means a lot to us. I hope we too have a good run on nilotonib.
I wish you all the best for your upcoming TFR.
Can
Category: Side effects

Replies: 55

Last updated: 4 November 2023
r06ue1 on 13 April 2023

Category: Clinical trials

Replies: 11

Last updated: 30 October 2023

Drug Combo of CML Medication + Misoprostol Works!
by JoeP (Oct 30)

My numbers were improved while I took Omeprozol (Nexium) a few years back while on Imatinib.

I was prescribed the Omeprozol because I developed serious acid reflux from dissolving my Imatinib

by 3oK@ (Sep 26)

Thank you for sharing the info. I tried 400 mcg a day for 2 months and did get much better results than with just Dasatinib. It was difficult to tolerate it and 2 x 200 was much less problematic

by ColoradoGuy (Apr 25)

I think he, and possibly most Oncologists tend not to prescribe anything that has not come out of clinical trial and approved for use in the scenario intended. I found the place where one of the

by r06ue1 (Apr 20)

Diarrhea is also common with Imatinib, but once you combine the two, it is much worse. I recommend taking it at night and not having to go into work the next day.
Category: Clinical trials

Replies: 11

Last updated: 30 October 2023
JoeP on 30 October 2023

Category: Clinical trials

Replies: 0

Last updated: 30 October 2023

Predicting TFR outcomes
by JoeP (Oct 30)

Just curious if anyone has read anything about a TIM3 protein that may be able to indicate to a high degree if a particular patient will respond well to TFR.

I attached two links apparently
Category: Clinical trials

Replies: 0

Last updated: 30 October 2023
Alan Locke on 27 October 2023

Category: Uncategorised

Replies: 0

Last updated: 27 October 2023

Cellulitis
by Alan Locke (Oct 27)

Occasionally, I have a swollen ankle as a side effect of my 400mg Imatinib. Usually, this recedes after a couple of days without too much concern.

However, recently this did not happen. After
Category: Uncategorised

Replies: 0

Last updated: 27 October 2023
Alan Locke on 25 July 2023

Category: Uncategorised

Replies: 1

Last updated: 27 October 2023

Eczema on the genitals
by Alan Locke (Oct 27)

Thankfully I am now in control of my eczema in a very sensitive area.

After a little trial and error, my doctor prescribed a thrush and eczema cream, that after a week worked!!

To

by Alan Locke (Jul 25)

link deleted
I hope gentlemen of the forum will find this interesting. I have an appointment with my doctor. Certainly more informed and more confident about treatment choice and hygiene care.
Category: Uncategorised

Replies: 1

Last updated: 27 October 2023
Karinne on 15 October 2023

Category: Uncategorised

Replies: 8

Last updated: 26 October 2023

5 years of TFR for me
by Karinne (Oct 26)

The only way to know is to try. Crossed fingers.

by hannibellemo (Oct 26)

Well, thank you! I'm planning on trying TFR in January. I hate to jinx myself, but I'm not particularly hopeful. My transcripts would rise so quickly whenever I had to stop dasatinib due to pleural

by Karinne (Oct 22)

Thanks Pat. How are you doing?

by hannibellemo (Oct 21)

Wonderful news, Karinne!
Pat
Category: Uncategorised

Replies: 8

Last updated: 26 October 2023
bendicco on 20 October 2023

Category: Uncategorised

Replies: 4

Last updated: 26 October 2023

RSV vaccine
by hannibellemo (Oct 26)

You're welcome, bendicco. Stay well!

by bendicco (Oct 23)

Thank you Pat! Not sure why I’ve been afraid to get it.

by Nimbus2 (Oct 22)

It takes some Googling to work out what is on offer in England. There appears to be a recommendation that the NHS could vaccinate infants and over-75.
Over-60s can be vaccinated privately at

by hannibellemo (Oct 21)

I had RSV last winter, I wouldn't wish it on my worst enemy! I wheezed, was short of breath, coughed my head off and this went on for a month. I ran to get the vaccine as soon as it became available
Category: Uncategorised

Replies: 4

Last updated: 26 October 2023
ColoradoGuy on 11 October 2023

Category: Treating CML

Replies: 1

Last updated: 16 October 2023

Great News For BC Treatment
by alexmcpee (Oct 16)

That’s amazing - let’s hope this gets off the ground as quickly as possible in the fight against progressive CML - another string in bow as they say.

by ColoradoGuy (Oct 11)

Not sure if this has been shared, but it is great news and I thought I would share.
https://www.businesswire.com/news/home/20231011243325/en/City-of-Hope-an...
Category: Treating CML

Replies: 1

Last updated: 16 October 2023
chrissie on 5 October 2023

Category: Uncategorised

Replies: 12

Last updated: 12 October 2023

Dosage change+ heart problem
by Wstevenson (Oct 12)

Thank you for this info!

by Mary Babbs (Oct 12)

Hi Chrissie ,

I was diagnosed with atrial fibrillation earlier this week . My ECG looked as if someone had been doodling on it as the line was so crazy ! My consultant has stopped my Ponatinib

by scuba (Oct 9)

Chrissie,

I would stick with magnesium supplements that are complexed with citrate, malate, turate or glycinate. The supplement you describe is more for laxative effects or as an antacid and

by chrissie (Oct 9)

Hi Scuba

First a massive thanks for the time you have spent replying to me.

I have looked high and low on the magnesium tablet box and leaflet to try to find out if it is oxide or not.
Category: Uncategorised

Replies: 12

Last updated: 12 October 2023
ekhodges on 27 September 2023

Category: Treating CML

Replies: 4

Last updated: 11 October 2023

Lost TFR: Should I go back on Gleevec or Try 2nd Generation TKI?
by johnw1001 (Oct 11)

Hi

I come to this discussion a bit late but some views on your TFR dilemma

I have been on imatinib for 16 years and have had some blips along the way

At one stage about 8 years I

by AlastairC (Sep 29)

You are very welcome.
I think the Destiny results which start to provide information on whether TFR is likely to be possible for different patients may be of interest and use to you. This video (

by ekhodges (Sep 28)

Hi-

Thank you so very much for your reply. I didn't know about the Destiny protocol so this is helpful. Will definitely mention it to my doctor.
Thanks again,

Beth

by AlastairC (Sep 27)

Hi
Sorry to hear about your lack of success in TFR. Can't advise on alternative TKIs, but I'm sure someone will.
I was on 400mg imatinib (Gleevec) for around 11 years, and pretty much undetectable
Category: Treating CML

Replies: 4

Last updated: 11 October 2023
shayner on 4 October 2023

Category: Uncategorised

Replies: 1

Last updated: 5 October 2023

23 months off imatinib
by AlastairC (Oct 5)

When I redcued imatinib from 400mg to 200 mg I had significant improvements, in energy, in cramp, in gastric issues and didn't have any more eye bleeds. Any change when (a year later) I attempted

by shayner (Oct 4)

I haven’t been on the group for a while and I was wondering if anyone has any information on how people generally are coping after discontinuing imatinib and remaining undetectable ? Im coming up to
Category: Uncategorised

Replies: 1

Last updated: 5 October 2023
3oK@ on 26 September 2023

Category: Treating CML

Replies: 1

Last updated: 5 October 2023

Curcumin hype and potential risks
by scuba (Oct 5)

The article "The dark side of curcumin" written by Estefanía Burgos-Morón and others:

https://europepmc.org/article/MED/19830693

is a letter commentary that criticizes the use of

by 3oK@ (Sep 26)

After years of supplementing with curcumin, I realized that it's completely useless against CML, but may work pro-CML since it's a potent SIRT1 and Nrf2 activator, although it's not clear at what
Category: Treating CML

Replies: 1

Last updated: 5 October 2023
Danmason11 on 30 September 2023

Category: Treating CML

Replies: 7

Last updated: 5 October 2023

Should I consider a change in meds?
by Danmason11 (Oct 5)

Thanks Kirk - crikey, that is similar! Fingers crossed I get to the same place you’re at 👍
Hope you’re well. Take care

by RC Kirk (Oct 4)

Hi Dan,
It looks like you are responding well to treatment with imatinib. My downward trajectory was very similar to yours (see below). Unless you see a definite upward trend you should be fine

by Danmason11 (Oct 4)

Thanks Al 👍

by alexmcpee (Oct 3)

Stay the course it took me 2.5 years to get MMR on Nilotinib and I plateaued around 0.16% for 6 months then a sudden drop to 0.07% - it’s certainly a marathon and not a sprint and “slow” responders
Category: Treating CML

Replies: 7

Last updated: 5 October 2023
scuba on 21 September 2023

Category: Uncategorised

Replies: 3

Last updated: 5 October 2023

"undetected" update ... with a twist
by Vikram (Oct 5)

Congratulations......

by scuba (Sep 23)

I went three years undetected while taking 20 mg dasatinib (sprycel). After 3 years undetected, I stopped taking dasatinib and remained undetected for the next 3.5 years (latest PCR result). My

by Surabhi (Sep 22)

Hi Scuba
Thanks for sharing , I wanted to congratulate you on your result .
Could you share for how long you had the CML drug before stopping it

Also which TKi were you on
Keep healing and

by scuba (Sep 21)

I had my six month PCR test results come back "undetected". It is now 3.5 years undetected without drug. And for the first time in 3 years, I actually had to visit my doctor in person.
As it turns
Category: Uncategorised

Replies: 3

Last updated: 5 October 2023
philmc on 13 September 2023

Category: Side effects

Replies: 2

Last updated: 2 October 2023

TKI-induced diarrhoea after stomach bug
by philmc (Oct 2)

Hi Peter,
Thanks. I went to the GP and got tested, turned out I'd contracted "Cryptosporidium", which I'd never heard of before. My family were over it in a few days. I've started to get better in

by Dustylloyd (Sep 30)

Hi Phil,

Ironically i’ve just amended an holiday we’re going on shortly, because of continuous write ups about the possibility of norovirus running rife through the hotel, I checked on the

by philmc (Sep 13)

Hi,
I picked up a stomach bug while on holiday and am still experiencing diarrhoea several weeks later. It's undoubtably the TKI that's causing it now, because my stomach always starts cramping a
Category: Side effects

Replies: 2

Last updated: 2 October 2023
3oK@ on 26 September 2023

Category: Treating CML

Replies: 0

Last updated: 26 September 2023

Inositol Hexaphosphate, IP6, InsP6, Phytic acid
by 3oK@ (Sep 26)

Something I discovered accidentally and started 10 g a day a month ago. Will let you know if it makes any difference in mid-November.
The guy who discovered IP6 anti-cancer properties says of all
Category: Treating CML

Replies: 0

Last updated: 26 September 2023
MJW31415 on 31 August 2023

Category: Treating CML

Replies: 8

Last updated: 26 September 2023

My Story
by 3oK@ (Sep 26)

My understanding is that at "normal" doses selenium is a great prevention against cancer, but it actually protects established cancer cells just as it protects any other cells. Only at super-high

by MJW31415 (Sep 21)

Hi Martin,

I don’t know if 60mcg of selenite will give the necessary blood concentration. There are many places online to find 200mcg sodium selenite pills.
I actually started with 1 mg/

by MartinZA (Sep 12)

Thank you so much for this link. I've written to them to ask if they'll send the product to South Africa but as yet there is no response. In the meantime I was able to find a zinc + selenium

by MJW31415 (Sep 10)

Hi Martin,

Sorry I took so long to get back to you.

I found sodium selenite 2 mg tabs at https://norinutraceuticals.com/

I'm not sure about their shipping policies as I could not
Category: Treating CML

Replies: 8

Last updated: 26 September 2023
Misbah on 22 May 2022

Category: Getting help

Replies: 12

Last updated: 22 September 2023

Need more support with my CML diagnosis
by ColoradoGuy (Sep 22)

IMHO I would not put anything on hold. My kids were 5, 8, and 12 when I was diagnosed. My oldest just started university this fall. Of course I have gone through ups and downs with worries about

by Surabhi (Sep 22)

Hi Misbah

So sorry to hear about your diagnosis.
Hang in there , things will get better.
CML has now become a treatable disease , the initial few months can be challenging as you adjust to the

by Kamil (Jun 7)

Hi Misbah,
My partner was diagnosed on 12th of April, and we started treatment 2 weeks ago. We are both 22 years old.
She started on 100 mg dasatinib, but developed a skin rash alongside minor

by Misbah (Jun 6)

Thank you so much for taking the time to reply to me. I am so happy to hear about how you’ve dealt with this and I can’t tell you how much strength your words have given me.
Category: Getting help

Replies: 12

Last updated: 22 September 2023
Surabhi on 22 September 2023

Category: Side effects

Replies: 0

Last updated: 22 September 2023

Nerve damage on dasatinib
by Surabhi (Sep 22)

My mom has been on dasatinib for last ten years with BCR abl

She was at 100mg daily which lead to pleural effusion.

Her dose was reduced to 50 mg daily which controlled the pleural
Category: Side effects

Replies: 0

Last updated: 22 September 2023
RC Kirk on 21 September 2023

Category: About CML

Replies: 0

Last updated: 21 September 2023

Video: Great and Crazy Things We Do in Medicine
by RC Kirk (Sep 21)

The invention of TKI treatment for CML is still one of the best success stories in oncology.
https://www.youtube.com/watch?v=EycIsY70je0
The part concerning CML is about eight minutes long and
Category: About CML

Replies: 0

Last updated: 21 September 2023