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Santa on 23 October 2023

Category: Uncategorised

Replies: 21

Last updated: 18 April 2024

Do I need change in meds? From Imatinib to Tasigna
by JoeP (Apr 18)

Just to add my 2 cents. I agree with others in saying you are in great shape with a swift response to Imatinib. I never got to CMR on 11 years of Imatinib. When I switched to Nilotinib I got to CMR

by scuba (Apr 18)

Alistair is absolutely correct regarding CML treatment specialists/researchers vs primary care hematologists and their knowledge levels.

It is good that you read (contrary to your doctor's

by Santa (Apr 18)

I am from one of the Baltic countries. We only have like 5 haematologists in total. None of them is specialised in CML. But they all have CML patients. I know that my doctor is very respectable and

by AlastairC (Apr 18)

I hope the video will help. I just re-read this thread; the fact that both the doctors have said dose reduction is not an option says to me that they are likely not CML specialists; they are
Category: Uncategorised

Replies: 21

Last updated: 18 April 2024
Smee on 6 April 2024

Category: Getting help

Replies: 3

Last updated: 11 April 2024

Worcestershire Social & Support Group?
by Smee (Apr 11)

I have been in touch as you recommend and am now on leukemiacare.org contact list for in person and zoom contacts . Thanks for the heads up.

by Dustylloyd (Apr 11)

Hi Smee
Great idea, hopefully other members of the “club” get in touch with you and hopefully you form a informal, but helpful group, I’m about 100 miles from you Smee so a bit too far for me.
Peter

by David Fitz (Apr 10)

Hi there,
We don’t really formally arrange meetups on this forum - obviously people are free to make plans to meet though!
You probably will have more success with Leukaemia Care, who are great at

by Smee (Apr 6)

After my recent diagnosis it occurs to me that I could do with a social and mutual support meet up every now and again to chat through life, the univrrse and every thing with like minded and
Category: Getting help

Replies: 3

Last updated: 11 April 2024
bonarhere on 8 April 2024

Category: Organising your life

Replies: 6

Last updated: 11 April 2024

How to cope with anxiety before/after physician visits
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?

by snowman 35 (Apr 9)

I was diagnosed in June of 2016.I am undetected since March of 2017.Everything goes perfect but every time I have a visit to my doc I think that my blood test will be bad.And do not think only my

by bonarhere (Apr 9)

Thank you both for your response. I got my results, and my value remains the same. :)
I was so relieved after getting the results. Again, I have never felt anxious about my visits/results before
Category: Organising your life

Replies: 6

Last updated: 11 April 2024
vlacer on 27 March 2024

Category: Blood tests

Replies: 6

Last updated: 3 April 2024

Finally!! “not detected” result
by vlacer (Apr 3)

Thanks Pojo,

I agree, it will be better not to take the risk for now because I already have heartburn issues so fasting with Imatinib will make it even worse.

Vlacer

by JoeP (Apr 2)

That Fasting Mimicking diet looks like a hard one to do. For me it’s easier to remain in a fast while not eating. The second I eat it’s over. The ship is underway and stopping it, at least for me,

by vlacer (Apr 2)

Thanks Pojo and Scuba for your advises, very interesting article about fasting mimicking diet.

Vlacer

by scuba (Apr 2)

Congratulations!
Fasting while taking imatinib won't be possible. Imatinib will cause bad nausea on an empty stomach.

What you could do is try a "fasting mimicking diet" https://perfectketo.
Category: Blood tests

Replies: 6

Last updated: 3 April 2024
Smee on 7 March 2024

Category: Side effects

Replies: 6

Last updated: 1 April 2024

Imatinib Tummy Upsets, Imodium, and Water Intake
by Smee (Apr 1)

Hi all,

I am still drinking more water, about 3 to 4 pints more than I feel the need for, spread through the day. After a month of this regime I now have a fairly normal tummy. As a side

by Danmason11 (Mar 22)

I can relate to this! I drink lots of water (3+ litres at least a day) but also go to the gym, so I also take a sugar free electrolyte with water after the gym or after a visit to the loo as and

by JoeP (Mar 21)

Come to think of it I never really drink that much water. Even now. I think I will follow your lead. With imatinib I had a whole bunch of annoying problems. One of which was gas. Maybe if I drank

by Smee (Mar 17)

BTW, havnt taken imodium for 3 weeks and thats a big change :)
Category: Side effects

Replies: 6

Last updated: 1 April 2024
scuba on 22 March 2024

Category: Uncategorised

Replies: 21

Last updated: 30 March 2024

Remission Update
by scuba (Mar 30)

I fast one day a week most Mondays and for 3 days at a time a few times a year (4).
I make sure I drink plenty of water throughout the day including water with salt (Himalayan salt). Getting enough

by JoeP (Mar 29)

Scuba how long are your fasting terms? I too have been fasting on a regular basis. 2.5 days is my longest so far. But I try to do it once per week. Although some of my side effects flare during the

by scuba (Mar 29)

David - Don't give up. Let your PCR results guide you. If you can remain "undetected" for 3 years while on your TKI, by all means consider trying again.
It gives your body's natural immune system a

by David Fitz (Mar 28)

> My experience suggests, 'if at first you don't succeed, try try and try again'
All depends on how badly you didn’t succeed, I guess. After my recent TFR failure, I won’t be trying again!
Category: Uncategorised

Replies: 21

Last updated: 30 March 2024
jriccoboni on 29 March 2024

Category: Uncategorised

Replies: 1

Last updated: 29 March 2024

Ip6 gold
by 3oK@ (Mar 29)

I tried 10g per day for 2 months, measured bcr at start and after 2 months, zero effects. Used 5g ip6 gold and 5g pure encapsulation. It did improve my cholesterol significantly.

by jriccoboni (Mar 29)

Was wondering if anyone had experience with ip6 gold.
https://pubmed.ncbi.nlm.nih.gov/12028025/
Category: Uncategorised

Replies: 1

Last updated: 29 March 2024
hsfl24 on 25 March 2024

Category: Uncategorised

Replies: 3

Last updated: 28 March 2024

TFR failed
by David Fitz (Mar 28)

It is totally safe to father a child on 100mg Dasatinib / Sprycel. I did that, and was given the explicit advice of Prof Apperley to stay on TKI while trying for a baby. She’s likely the most expert

by hsfl24 (Mar 26)

Hi Pojo, thank you for the replied and kind words. Yes, although being prepared that the failure might happen at some point, but still disappointed when it happens. Was thinking to father a child

by JoeP (Mar 25)

DanC It’s natural to be anxious. I get like that too when numbers don’t go the way I planned even after 0ver 12 years of dealing with CML. It’s way too early to be thinking worst case scenario. And

by hsfl24 (Mar 25)

Hi everyone, I am so grateful that the site has been provided so much valuable information and inspiration over the years. Diagnosed in 09/2019, taking 100 mg dasatinib, took 14 month to MMR in 11/
Category: Uncategorised

Replies: 3

Last updated: 28 March 2024
healthyhabits on 15 July 2023

Category: Treating CML

Replies: 14

Last updated: 27 March 2024

Asciminib?
by kat73 (Mar 27)

I have a selfish specific question: Did you have the "frog eyes" of imatinib (and dasatinib, alas, I've found)? And if so, did this change on asciminib?

by healthyhabits (Mar 3)

Hi Deni,
I am about 2-3 months on asciminib, and it is infinitely better for me in terms of side effects than dasatinib. I hope you will likewise find a much greater quality of life on this drug. My

by Taper11 (Feb 23)

Also - again my own opinion, dasatinib gets the most complaints. I hope ASC improves your quality of life should you take it!

by Taper11 (Feb 23)

Hi Deni,

I'm a member of the asciminib group on Facebook. When I compare the amount of side effect complaints compared to other TKIs, it seems much lower with ASC.
Many people have switched
Category: Treating CML

Replies: 14

Last updated: 27 March 2024
William1567 on 28 May 2018

Category: Treating CML

Replies: 16

Last updated: 21 March 2024

Any consequences of Gleevec dosage shuffle?
by JoeP (Mar 21)

Haematologists have many patients with many different conditions. They can’t all be great at their jobs. I believe we have to make and take responsibility for our actions. I have a doc who is

by Buzzm1 (Mar 18)

"he (my doctor) told me that 70 mg is the minimum dose and if I take a lower dose I may develop resistance due to resistance mechanisms."
snowman, there is absolutely no evidence that lowering

by snowman 35 (Mar 18)

Hi David

A year ago I had the same conversation with Mya doc and he wasn't nageative at all.But it was a few months that a started again sprycel(failed tfr attempt)and he told me we gonna

by snowman 35 (Mar 18)

Hi David

A year ago I had the same conversation with Mya doc and he wasn't nageative at all.But it was a few months that a started again sprycel(failed tfr attempt)and he told me we gonna
Category: Treating CML

Replies: 16

Last updated: 21 March 2024
JoeP on 14 March 2024

Category: Treating CML

Replies: 10

Last updated: 18 March 2024

Sokal Index
by David Fitz (Mar 18)

Feel free to get in touch any time.
Happy to talk about my TFR attempt any time too. It doesn’t work for everyone of course, and I am testament to that despite having really good numbers going into

by JoeP (Mar 18)

I am on my third oncologist. Not sure all of the original diagnosis info has been carried over through the years.

But I will certainly inquire with my current doc.

My fear is that he

by David Fitz (Mar 18)

Pojo, the spleen size is only important at the time of diagnosis.c It, and the blast % would typically be in a clinic report that you got around the time of diagnosis. If it’s not something that was

by JoeP (Mar 17)

Very nice. I see my doc in June and will ask him to perform the spleen size on me. I’m actually performing it on myself, I’ll see how close I come to him.
It would be interesting to run an informal
Category: Treating CML

Replies: 10

Last updated: 18 March 2024
David Fitz on 18 March 2024

Category: Uncategorised

Replies: 0

Last updated: 18 March 2024

UK Haematology Patient and Carers Congress 2024
by David Fitz (Mar 18)

I have been working with Sanius Health on developing a wide-ranging patient and carer congress for haematology patients.
If you live in the UK, especially London, take a look at this event and I
Category: Uncategorised

Replies: 0

Last updated: 18 March 2024
YianniA on 17 March 2024

Category: Drug-drug interactions

Replies: 0

Last updated: 17 March 2024

GLP1’s and CML/Dasaranib
by YianniA (Mar 17)

Got approved to take a GLP1-Zepbound and am wondering if anyone with CML who is using Dasatinib has encountered anything while taking any of the GLP1 drugs. Am targeting weight loss and some
Category: Drug-drug interactions

Replies: 0

Last updated: 17 March 2024
johnw1001 on 11 March 2024

Category: Treating CML

Replies: 2

Last updated: 13 March 2024

Benefits of Resveratrol
by johnw1001 (Mar 13)

Hi Nimbus

Resveratrol has in part gained a bad press because historically lots of clinics in Eastern Europe especially Romania offered high dose treatments that promised to halt the ageing

by Nimbus2 (Mar 12)

There is much negatively expressed now by the use of resveratrol:
https://www.youtube.com/watch?v=Xn0EJQPyxkA
I have asked questions about using flavonoids to induce apoptosis at some CML seminars.

by johnw1001 (Mar 11)

Hi All,

I came across a journal article by Xin-pu Wu published in 2015 that in summary stated :

"Resveratrol has been demonstrated to induce apoptosis (death of cells ) in CML cells,
Category: Treating CML

Replies: 2

Last updated: 13 March 2024
Fillette on 6 March 2024

Category: Blood tests

Replies: 7

Last updated: 13 March 2024

Should I Increase Dasatinib dose from 50mg to 100 mg?
by AlastairC (Mar 13)

This change from .007 to 0.015 is not statistically significant - it is well within the error band of the measurement technique at this low level. I would suggest that if it rises again at both of

by jriccoboni (Mar 12)

I am in similar situation. I finally reached a 4 log reduction after switching from 100mg to 80mg sprycel ( .007 IS) . 8 weeks later I took a test yesterday and my results are no .015 IS. I am

by scuba (Mar 11)

Yes. The fluctuations are within the accuracy and precision of the PCR test. 1/2 log up or down can be expected from the same blood sample.

At MMR4, residual presence of bcr-abl is very very

by Tbrand (Mar 10)

So any fluctuations below MMR 4 is all noise?
Category: Blood tests

Replies: 7

Last updated: 13 March 2024
healthyhabits on 4 February 2024

Category: Blood tests

Replies: 12

Last updated: 12 March 2024

Afraid
by ColoradoGuy (Mar 12)

That is great news! I would however add that I don't think a transplant conversation should have even been in the discussion yet based on the numbers you mentioned. There could be other

by JoeP (Mar 3)

Great news! That’s a high few people in this world experience seeing their numbers drop like a rock. Maybe you have, but in case you haven’t, you may want to look into whether there is a patient

by healthyhabits (Mar 3)

I just have to say everyone on this forum has been so incredibly helpful. I have been very strict with myself in the last month or so, taking the drug exactly as prescribed (as you suggested), and

by JoeP (Feb 5)

I must admit when the Nilotinib wasn’t working as well as we hoped, this was July 2022, I was concerned along with my doc. I knew we wouldn’t be approved for the ascinimib and I just told my doc to
Category: Blood tests

Replies: 12

Last updated: 12 March 2024
vonnie on 3 March 2024

Category: Uncategorised

Replies: 8

Last updated: 11 March 2024

Imatinib 400mg
by vonnie (Mar 11)

Hi to all. As stated I am having a break from taking Imatinib past one week. I feel already more energised but have had two episodes of urgent.uncontrolled diarrhea. Has anyone any advice or

by vonnie (Mar 11)

Hi Buzz
Yes my consultant will do my blood works in 4 weeks time, I will then meet with her for discussion as to whether to restart then or if bloods show good response to break I may be offered a

by Buzzm1 (Mar 4)

Vonnie, hopefully your consultant is going to have you test again before any possible restart and not restart you unless it is necessary and if a restart is necessary it would be on a lowered dosage

by vonnie (Mar 4)

Hi to you all and thank you for your very useful and informative advice. Today I had a meeting with my consultant and I am very pleased to say that I have been offered a month's break from Imatinib
Category: Uncategorised

Replies: 8

Last updated: 11 March 2024
WillO on 24 November 2023

Category: Treating CML

Replies: 3

Last updated: 3 March 2024

Nilotinib to Imatinib
by WillO (Mar 3)

Hi Martin. Thanks for the reply, it’s good to know it worked out for you. I seem to be ok so far. Some minor differences but nothing significant.

Cheers

Will

by MartinZA (Mar 1)

Hi, sorry for the late reply to this but I somehow missed it in November.
I went "backwards" from dasatinib to imatinib, so it is definitely possible to go from a 2nd generation drug to imatinib.

by JoeP (Nov 24)

WillO I deleted my initial response but I did want to convey this thought. If you’ve been on Nilotinib for 5 years then that probably means you haven’t reached MMR4.5. I hope I am wrong but if that

by WillO (Nov 24)

Hi. Anyone have any experience of changing from Nilotinib to Imatinib? I have a new care provider and this is my option. I have successfully been taking Nilotinib for the last 5 years. I have
Category: Treating CML

Replies: 3

Last updated: 3 March 2024
Vikram on 1 March 2024

Category: About CML

Replies: 0

Last updated: 1 March 2024

Cancer tablate
by Vikram (Mar 1)

https://www.google.com/amp/s/www.ndtv.com/india-news/tata-institute-clai...
Tata Institute Claims Success In Cancer Treatment - With "Rs 100 Tablet"

The doctor said there were challenges
Category: About CML

Replies: 0

Last updated: 1 March 2024
SarahCMLjourney on 19 February 2024

Category: Blood tests

Replies: 6

Last updated: 29 February 2024

New to CML any advice welcomed
by MartinZA (Feb 29)

Hi Sarah,
Sorry to hear that you had to join our little community at such a young age!
I just wanted to share some hope with you as I was also on the younger side when diagnosed, although a bit

by SarahCMLjourney (Feb 20)

Thanks for all of your responses!
I will definitely go through the forum to find those questions etc
Appreciate the kind words

by David Fitz (Feb 20)

Hi Sarah,
For what its worth, I was young at the time of diagnosis (early thirties) and it took me a lot longer than usual to respond. But I did respond!
I think I was around 20% at 3 months.
David

by AlastairC (Feb 20)

Sarah very sorry that you have joined this club at such an young age, but it likely means that you will be a member for many decades!
As Buzz says your initial trend is down, so the imatinib is
Category: Blood tests

Replies: 6

Last updated: 29 February 2024