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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
Janet Treble on 8 June 2023

Category: Uncategorised

Replies: 5

Last updated: 15 June 2023

MMR at last!
by Janet Treble (Jun 15)

Thanks Alex, so long as those numbers continue to go down I will be happy 😊

by Janet Treble (Jun 15)

Thanks for replying, I'm so glad I'm not the only one who's taken time to get here!

by ColoradoGuy (Jun 14)

Took me about about 3 years and required a switch from Dasatinib to Nilotinib. Currently 0.008 and creeping up on 6 years.

by alexmcpee (Jun 13)

Yay awesome stuff.
It took me exactly 2.5 years to hit MMR. @5 years in am 0.014% nigh on MR4. It’s slow going but the numbers continue down and as you’ll see many many times on here the trend down
Category: Uncategorised

Replies: 5

Last updated: 15 June 2023
Merlinlewis on 11 June 2023

Category: Treating CML

Replies: 3

Last updated: 14 June 2023

Doctor appointment tomorrow / Switching Medication Nilotinib to Imatinib ?
by alexmcpee (Jun 14)

I have a CML friend who went from Dasatinib to Imatinib so yeah you can go from a gen 2 to a gen 1.
If I were you I’d push for Imatinib for several reasons. 1 being it’s the drug we know the most

by Felix (Jun 12)

Hi, I would go for 20 mg Dasatinib not 50 too toxic rather than Imatinib .Shouldn’t get problems on 20 mg ,a few days of mild headaches then you should feel fine ,where as with Imatinib fatigue for

by Buzzm1 (Jun 12)

Merlinlewis, with your BCR-ABL percentage at 0.02 it shouldn't take a very high dosage of TKI to control your remaining CML. You might want to try to convince your oncologist/hematologist to put

by Merlinlewis (Jun 11)

Hey guys!
Maybe some of you remember me from my post in which i thought i will never reach MMR!

There are some good and some bad news :D!

I reached MMR after around 27 months on
Category: Treating CML

Replies: 3

Last updated: 14 June 2023
Jacqueline Allmark on 14 June 2023

Category: Side effects

Replies: 0

Last updated: 14 June 2023

Laser removal of permanent eyebrows
by Jacqueline Allmark (Jun 14)

I have CML BCR/ABL 0.04 diagnosed 2019.My imatinib dose has just been reduced to 200mg because of dry eyes It was 400mg before.

I am due to have laser removal of permanent make up to eyebrows
Category: Side effects

Replies: 0

Last updated: 14 June 2023
Nimbus2 on 12 June 2023

Category: Uncategorised

Replies: 2

Last updated: 14 June 2023

Silvio Berlusconi CML
by Nimbus2 (Jun 14)

Thank you, Alastair, for finding a good authority. I can understand why the press incorrectly identifies chronic myelomonocyte leukaemia as CML.

by AlastairC (Jun 12)

The BBC think you're right.
"The former Italian leader had been suffering from a rare form of blood cancer, chronic myelomonocyte leukaemia, doctors at San Raffaele revealed in April."

by Nimbus2 (Jun 12)

I wonder how Silvio Berlusconi came to die of leukaemia. His death appears to be from a lung infection linked to CML.
P.S. I think that he may have had CMML, which is incorrectly abbreviated to CML
Category: Uncategorised

Replies: 2

Last updated: 14 June 2023
Kamil on 13 June 2023

Category: Blood tests

Replies: 0

Last updated: 13 June 2023

Elevated WBC , PCR still dropping
by Kamil (Jun 13)

Hi All,

I hope everyone is well,

We just received our 12 month bcr-abl results alongside with the rest of the blood results.
The BCR-ABL (is) is trending downwards from 80% at diagnosis
Category: Blood tests

Replies: 0

Last updated: 13 June 2023
healthyhabits on 22 May 2023

Category: Side effects

Replies: 12

Last updated: 10 June 2023

Second Week on Dasatinib
by scuba (Jun 10)

CML will not "get you", you caught it in time. Once you achieve cytogenetic remission (FISH = zero; PCR < 1.0%), progression free survival is over 95%. And the 5% who don't make it die from

by healthyhabits (Jun 9)

Scuba! What a nice reply. I have read many of your posts, I am so in awe of and grateful for your comments. To give back to this community is immensely helpful. This was very heartening to hear and

by scuba (Jun 9)

Olivia,
I remember like it was yesterday when I was diagnosed with advanced CML, borderline blast crisis in May 2010. My wife cried at hearing the news and I sat there with the hematologist and

by healthyhabits (Jun 9)

Hi Martin! You are, what we call in my culture, a mensch. I really appreciate your thoughtful and wise responses.
I started on 400mg bosutinib and I will admit, I was immediately unwilling to take
Category: Side effects

Replies: 12

Last updated: 10 June 2023
Nimbus2 on 9 June 2023

Category: Uncategorised

Replies: 0

Last updated: 9 June 2023

A CML patient
by Nimbus2 (Jun 9)

There is a gentleman on Youtube who is having a transplant today.
https://www.youtube.com/watch?v=MWbozLwwo9M
Can anyone go there and give a bit of encouragement in the Youtube comments?
Category: Uncategorised

Replies: 0

Last updated: 9 June 2023