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scuba on 4 May 2018

Category: Uncategorised

Replies: 84

Last updated: 26 July 2023

Could Fasting + TKI 'cure' CML?
by igennem (Jul 26)

jeeeez those are like 60 USD in my country

actually the 1000 MG and 120 pcs is 100 USD.

by scuba (Jul 26)

Curcumin is the active ingredient in turmeric. Turmeric is a root and used to spice up food. Curcumin is what makes it yellow.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4686230/
I take Sabinsa's

by igennem (Jul 26)

Scuba,
I have consulted with my doctor and he is ok taking turmeric and/or curcumin extract with nilotinib.

So I will try if it has any nice effect on my BCR-ABL levels.
When you say you take

by igennem (Jul 20)

what mess?
Category: Uncategorised

Replies: 84

Last updated: 26 July 2023
Alan Locke on 23 July 2023

Category: Uncategorised

Replies: 0

Last updated: 23 July 2023

Eczema on the genitals
by Alan Locke (Jul 23)

I have read threads on this forum, where members have experienced the side effect of eczema in a sensitive area of their body.

I have been diagnosed with eczema on my testicles and penis. The
Category: Uncategorised

Replies: 0

Last updated: 23 July 2023
Norma_55 on 20 July 2023

Category: Treating CML

Replies: 1

Last updated: 22 July 2023

Alternative natural treatments for CML
by Nimbus2 (Jul 22)

I suspect that none of these "natural treatments" are not ALTERNATIVES to TKIs.

by Norma_55 (Jul 20)

I found this very interesting
And 40% have been approved by the FDA
I would like to know what peoples views are on these treatments
https://www.intechopen.com/chapters/53278
I welcome your
Category: Treating CML

Replies: 1

Last updated: 22 July 2023
loafer on 10 July 2023

Category: Blood tests

Replies: 2

Last updated: 19 July 2023

Any ideas
by alexmcpee (Jul 19)

Blimey I echo everything ColoradoGuy says. It’s important to move on from CML when the goings good but it’s also a reminder it’s never a given this is proof that resistance can emerge which is why

by ColoradoGuy (Jul 10)

I think the first step would be to look for mutations. I would also consider a switch to Nilotinib as Sprycel appears not to be working as intended. I made a switch from Sprycel to Nilotinib and

by loafer (Jul 10)

It has been a while,any ideas from 10/2022 and on .
20 Mg Sprycel

08/2018 thru 02/2019

PCR 0.000
New Doctor

20 Mg Sprycel

06/07/2022 PCR 0.298

10/24/2022 PCR 78.
Category: Blood tests

Replies: 2

Last updated: 19 July 2023
Lydia on 16 July 2023

Category: Uncategorised

Replies: 1

Last updated: 17 July 2023

Treatment Free.
by Buzzm1 (Jul 17)

Lydia, hopefully the answer you received was that since you were not going to be part of a Stop Study, and had been on Imatinib 400mg for 17 years, you and your consultant could set your own

by Lydia (Jul 16)

I posted a question and later got the answer from elsewhere but couldn't find out if it was possible to delete it. Thank you.
Category: Uncategorised

Replies: 1

Last updated: 17 July 2023
vlacer on 14 July 2023

Category: Drug-food interactions

Replies: 2

Last updated: 17 July 2023

NCCN guidelines for CML warnings regarding Turmeric
by vlacer (Jul 17)

Hi Scuba,

Thanks, your answers are always supported by scientific researches. Today I asked my Doctor and he recommended to stop taking the Curcumin, of course after I mentioned the warnings

by scuba (Jul 14)

The concern regarding Curcurmin/Turmeric according to the table on page 25 is that it could 'enhance' the absorption of some TKI's (dasatinib in my case) which may or may not be a good thing.

by vlacer (Jul 14)

I was diagnosed a year ago and it is my opinion that this forum is by far the best source of information for CML patients so I have been taking the supplements that other members of the forum
Category: Drug-food interactions

Replies: 2

Last updated: 17 July 2023
healthyhabits on 12 July 2023

Category: Blood tests

Replies: 1

Last updated: 12 July 2023

PCR Result - 2 Months
by Buzzm1 (Jul 12)

Olivia, an optimal response is BCR-ABL1 ≤10%, ≤1% and ≤0.1% at 3, 6 and 12 months of TKI therapy.
Buzz

by healthyhabits (Jul 12)

Hi everyone,
I received my first PCR result since diagnosis in April. I don’t have the PCR at diagnosis, but the bone marrow aspirate came back at 83% BCR-ABL1.
Started dasatinib in May. Two months
Category: Blood tests

Replies: 1

Last updated: 12 July 2023
scuba on 12 July 2023

Category: Uncategorised

Replies: 0

Last updated: 12 July 2023

Vitamin D - again ....
by scuba (Jul 12)

Daily Vitamin D Consumption May Reduce Cancer Mortality
https://scitechdaily.com/daily-vitamin-d-consumption-may-reduce-cancer-m...
When all 14 studies were pooled, no statistically significant
Category: Uncategorised

Replies: 0

Last updated: 12 July 2023
Fiona smith on 5 July 2023

Category: Uncategorised

Replies: 3

Last updated: 9 July 2023

Fiona smith
by Christine R (Jul 9)

Hi Fiona. I am you but 20 years in your future. My cml was diagnosed about 18 months after my breast cancer was. But in my case it was my 2nd breast cancer. The blood tests were normal during my

by alexmcpee (Jul 5)

Hi Fiona
Sorry to hear about your breast cancer and now your cml diagnosis. That’s a hell of a lot to take in. Now the great news is CML treatment is about 95% successful with TKI. A medicine you’

by scuba (Jul 5)

Download a copy of the NCCN guidelines for CML. It will give you an excellent overview of CML terminology, treatments (drugs) and related information.

David, Sandy and others active on this

by Fiona smith (Jul 5)

Hi just been diagnosed! A lot to take in after coming out of breat cancer 18 months ago . Any helpful tips would be grateful . Just terrified of drug side effects as have suffered so much x
Category: Uncategorised

Replies: 3

Last updated: 9 July 2023
MartinZA on 29 June 2023

Category: Treating CML

Replies: 4

Last updated: 9 July 2023

Another 3 months of TFR done - slight rise but still hopeful
by David Fitz (Jul 9)

Best of luck with your doctor, Martin. Loads of patients in successful TFR hover around the MR4 mark with no need to go back on medication.
“Loss of molecular response” is generally a term reserved

by MartinZA (Jul 4)

Thank you Buzz and Olivia for the kind messages! I'm really interested to read about your experience with TFR, Buzz, as this is going to be incredibly useful to tell my doctor tomorrow. I believe

by healthyhabits (Jul 2)

Martin, that is wonderful news!! Thank you for updating us! Glad to hear you are doing so well.
Olivia

by Buzzm1 (Jul 1)

Hi Martin; wishing you continued good luck. I don't see any reason for you to retest or to have a bone marrow biopsy. You are a very long way from losing MMR, 0.1, which is considered relapse
Category: Treating CML

Replies: 4

Last updated: 9 July 2023
ThomasS on 7 July 2023

Category: Uncategorised

Replies: 3

Last updated: 9 July 2023

Pleural Effusion/Rash
by David Fitz (Jul 9)

There are many of us, me included, who are on 20mg of dasatinib. Can’t you just insist that you give that a go, and agree to slightly more frequent PCR testing to monitor?
David.

by ThomasS (Jul 8)

Buzz, thank you for reply. I hadn't thought about lowering the dose to 30mg to get rid of the mild PE and the rash.
Thank you,
Tom

by Buzzm1 (Jul 8)

Tom, yes, Sprycel can cause a mild pleural effusion. Typically a full blown pleural effusion is treated by stopping the TKI until the pleural effusion resolves. A mild pleural effusion could be

by ThomasS (Jul 7)

I have a question living here in the US in GA. I haven't posted in a while but when I went to see my Dr he said I have a mild case of pleural effusion. I've had it for over a month now. I've had
Category: Uncategorised

Replies: 3

Last updated: 9 July 2023
catz555 on 4 July 2023

Category: Uncategorised

Replies: 7

Last updated: 5 July 2023

Losing TFR after 3months
by catz555 (Jul 5)

Much thanks Scuba

by scuba (Jul 5)

Do I think food makes any difference? Yes.
Cancer thrives in a high sugar environment (glucose) in order to grow and proliferate. Cancer cells need glucose for energy more so than normal cells and

by catz555 (Jul 4)

Much thanks and that’s great you’re TFR now. Will up dose of Tumeric and hope that next bloods is better. Do you think food makes any difference and if so what is optimum diet?

by scuba (Jul 4)

I went through what you are going through, but my numbers were worse than yours.

My PCR rose and fell but with an upward trend until it hit 0.08. I then restarted 20 mg dasatinib and in 3
Category: Uncategorised

Replies: 7

Last updated: 5 July 2023
Vikram on 21 June 2023

Category: Uncategorised

Replies: 5

Last updated: 28 June 2023

Creatinine
by chrissie (Jun 28)

I can only say what happens with me - diagnosed Sept 2009. Creatinine levels are measured as part of the 3 monthly blood test checking our kidneys, liver etc - and I think it's the same for all UK

by Vikram (Jun 27)

Thank for your valuable reply
Why Every 3 month?
Every CML person require this test??
Only imtanib.....?

by chrissie (Jun 26)

Creatinine levels are checked every 3 months in the UK with regular blood tests. Imatinib is known to raise creatinine levels and mine hav ecertainly been raised for a few years. However, research

by Vikram (Jun 26)

Any information...please share....
Category: Uncategorised

Replies: 5

Last updated: 28 June 2023
Danmason11 on 5 January 2023

Category: Treating CML

Replies: 10

Last updated: 28 June 2023

Nilotinib or Dasatinib?
by Danmason11 (Jun 28)

Just received my results from the blood test I had done in May…0.18%. So close to MMR 😭 hopefully at 24 months in August I’ll cross that line!

by MartinZA (Apr 13)

Sounds like a good plan, Dan - and I'm betting on your crossing that MMR line in August! Onwards and downwards.

by Danmason11 (Apr 13)

Thanks Martin. I’ve spoken to my consultant and he didn’t even mention switching TKI, was happy to give Imatinib more time in the hope of getting below 0.1%. Seemed happy enough with the downward

by MartinZA (Apr 12)

Hi Dan
This seems to be good news and just over half the previous result! It also mirrors my time frame and I know two friends living with CML who had a similarly slow time frame. If the numbers
Category: Treating CML

Replies: 10

Last updated: 28 June 2023
Mike B on 23 June 2023

Category: Blood tests

Replies: 7

Last updated: 27 June 2023

Detected after not being detectable
by healthyhabits (Jun 27)

Thank you Mike, thank you scuba! 100mg is way too much for me. I much prefer these side effects to the ones I experienced on bosutinib (crazy nausea) but would much prefer to be on a lower dose than

by scuba (Jun 26)

Olivia,
You were just diagnosed so you need to be very vigilant. If you show signs of myelosuppression, rashes (mouth sores), dose reduction to 70 mg or even better to 50 mg. is warranted. In some

by Mike B (Jun 26)

My specialist now starts all new CML chronic phase patients at 50mg dose if they begin with Dasatinib. She feels there is now enough evidence and studies to show 50mg is a reasonable place to start

by healthyhabits (Jun 26)

Sorry Mike for this surprising result - sounds like Scuba and your doc (among others) know what they are talking about and you are in the best hands!
@Scuba, @others who have experience with this!
Category: Blood tests

Replies: 7

Last updated: 27 June 2023
argearge on 24 June 2023

Category: Treating CML

Replies: 2

Last updated: 26 June 2023

mmr still after 5 years
by argearge1 (Jun 26)

I will discuss this in september with my hematologist.

by scuba (Jun 24)

Consider drug rotation:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6540367/
From the article:

"Moreover, the simulations give credence to the suggestion that lower drug concentrations

by argearge (Jun 24)

Hi

Since June 2021 in MMR. In March 2023 in mr4.0. but now back in MMR. Bcrabl 0.05IS.
Still on imatinib 600.
What to do next?
Category: Treating CML

Replies: 2

Last updated: 26 June 2023
hogboy on 22 June 2023

Category: Uncategorised

Replies: 2

Last updated: 24 June 2023

Newly diagnosed
by Crfharris (Jun 24)

Not sure how close you are to North Carolina but Duke has an outstanding department.

by healthyhabits (Jun 23)

Hi, so sorry to hear! You're in good company on this site. I don't live in VA, but I know UVA has a great reputation. I would call their leukemia service and ask for a referral for a CML specialist

by hogboy (Jun 22)

Located in Va and need a doctor that specializes in CML

Can travel but prefer Va, Nc or Md
Category: Uncategorised

Replies: 2

Last updated: 24 June 2023
Sd on 16 May 2023

Category: Side effects

Replies: 18

Last updated: 22 June 2023

Imatinib and tetanic cramps
by Nimbus2 (Jun 22)

Hello David.
This is mildly off-topic, but I started experiencing severe hand problems in 2006 when I was 50. My profession required a heavy amount of typing, and I studied for a law degree

by scuba (Jun 16)

Indeed!

by David Fitz (Jun 16)

These small molecule medications we take are a bit of an enigma. Nimbus2, your cramps were cured and that is fantastic. I can’t hold a pen for more than a couple of lines of writing before my

by SS86 (Jun 16)

THANK YOU, Scuba. I dont have words to express how much hope you add to our lives.
Thanks
Category: Side effects

Replies: 18

Last updated: 22 June 2023
scuba on 17 June 2023

Category: Uncategorised

Replies: 0

Last updated: 17 June 2023

Risk of Covid "worse" with more jabs ...
by scuba (Jun 17)

https://www.medrxiv.org/content/10.1101/2023.06.09.23290893v1.full.pdf
Risk of Coronavirus Disease 2019 (COVID-19) among Those Up-to-Date and Not

Up-to-Date on COVID-19 Vaccination
Summary:
Category: Uncategorised

Replies: 0

Last updated: 17 June 2023
Karthikeyan on 18 November 2021

Category: Uncategorised

Replies: 10

Last updated: 16 June 2023

About generics in UK
by Nimbus2 (Jun 16)

Thank you, Richard. Having suffered considerable adverse effects from generic imatinib, I dreaded generic dasatinib. However, Teva dasatinib has given me no issues whatsoever.

by Richard42 (Jun 15)

Apologies for somewhat belated response - am prompted to reply by discussions on another forum about whether generic dasatinib should or should not be available in the UK for CML. My understanding

by David Fitz (Mar 22)

Hi,
Richard will know more about this than me, but you can see here that the PIL (Patient Information Leaflet) is very clear that Teva dasatinib is indicated for CML.
https://www.medicines.org.uk/

by labros (Mar 17)

Hello Richard,
Can you please share more details. I live in the UK, use the SPRYCEL the last 3 years and I was offered the TEVA this time.
Thanks in advance.
regards

Lampros
Category: Uncategorised

Replies: 10

Last updated: 16 June 2023