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Ontasigna on 6 June 2020

Category: Getting help

Replies: 2

Last updated: 7 June 2020

Nilotinib and Figs
by Karthikeyan (Jun 7)

Hello David,

Im taking nilotinib.they told me to avoid everything that tastes sour,which includes all citrus fruits, tamarind,mango etc.
Can i eat carissa carandas(extreme sour taste).

by David Fitz (Jun 6)

Sure is. The reason some fruits can’t be eaten is because of an enzyme called CYP3A4- and figs don’t appear to cause issues with that.

by Ontasigna (Jun 6)

Hi all,
Is it ok to eat figs (fruit) when on Nilotinib.
Category: Getting help

Replies: 2

Last updated: 7 June 2020
vvk on 3 March 2017

Category: Organising your life

Replies: 6

Last updated: 6 June 2020

Is my thinking correct to marry a girl with a similar condition (CML) like me .
by Busaboy (Jun 6)

"Cmlonly.com" ?
Somebody buy the domain. You're welcome.
Not a bad idea though. Certainly a lot of understanding and common ground I would think n

by Karthikeyan (Jun 4)

Did you find someone.

by vvk (Apr 2)

Thanks EvaH for your suggestions .

by EvaH (Mar 9)

My thinking is that AS it has a good life expentancy, I dont consider it a lie to explain the condition while steering clear of the term leukemia. Often people want a name and dont really care that
Category: Organising your life

Replies: 6

Last updated: 6 June 2020
EvaH on 4 June 2020

Category: Treating CML

Replies: 0

Last updated: 4 June 2020

Reminder: Order your meds in good time
by EvaH (Jun 4)

Hi all,
Covid19's main impact for CML folk would appear to be in disrupted supply chains and distracted staff in the supply chain.
I started to try to get more imatanib over 10 days ago, a
Category: Treating CML

Replies: 0

Last updated: 4 June 2020
Chuckster on 3 June 2020

Category: Blood tests

Replies: 7

Last updated: 3 June 2020

Latest Blood Test Results: May28, 2020
by scuba (Jun 3)

This is what I take and not specific to CML patients. I wish I had known about the importance of these prior to CML and had been taking them. At diagnosis my vitamin D level was 17 ng/ml):
1.

by scuba (Jun 3)

If I am not eating foods rich in zinc (Oysters), I just take a daily supplement from time to time (15 mg). Women need less than men. No specific brand, just reputable. I tend to take zinc every day

by Karthikeyan (Jun 3)

Hello scuba, what are the supplements cml patients should take other than vitamin d3.

by Felix (Jun 3)

Hi Scuba, just going to add Zinc to my other vits ,how much do you recommend please ,thank you , Denise.
Category: Blood tests

Replies: 7

Last updated: 3 June 2020
Christine R on 24 May 2020

Category: Uncategorised

Replies: 17

Last updated: 3 June 2020

covid 19 threat to cml patients real or hypohtetical?
by Felix (Jun 3)

Hi Scuba, I for one thank you so much for all the information and support you have given me.You gave me the courage to stand up to my Doctor regarding my dosage of Dasatinib and actually pass

by scuba (Jun 3)

Additional information on Covid-19 and CML (from American Society of Hematology)

https://www.hematology.org/covid-19/covid-19-and-cml

COVID-19 and CML: Frequently Asked Questions updated 21 May
(

by Kenny (Jun 3)

I now very rarely visit this forum and instead mostly go to mcmillan cancer support or cancer research uk now as I find having dangerous unproven theories about covid 19 and how it affects people

by kali (Jun 2)

I appreciate the posts that Scuba puts on here. The information has given me the ability to look into some of the ideas he posts. That provides the wonderful option of learning and researching the
Category: Uncategorised

Replies: 17

Last updated: 3 June 2020
Sd on 31 May 2020

Category: Side effects

Replies: 8

Last updated: 3 June 2020

cramps and diarrhea
by Sd (Jun 3)

I will do that. I think right now it is just trying to avoid abrupt changes in diet.

by Alaina (Jun 3)

No problem, SD. If things get better with your gut, please share your nutrition regimen as I would like to hear what has worked well for you.

by Sd (Jun 1)

That is a good point, Alaina. Since the spring/summer here, I have been eating more fresh veggies from our garden (chard, lettuce) and some purchased corn. This is definitely more fiber than I

by Alaina (Jun 1)

Hlo SD. I was told by a nutritionist that TKIs are known for GI upset and causing sensitivity when there was none prior to starting medication. Only suggestion I have is to look at your diet. Maybe
Category: Side effects

Replies: 8

Last updated: 3 June 2020
Beulaparthiban on 2 June 2020

Category: Uncategorised

Replies: 1

Last updated: 2 June 2020

CML and marriage
by Karthikeyan (Jun 2)

Hello beulaparthiban,i think you should be from south of india.There is no forum or websites for cml patients for matchmaking in india.my suggestion is,talk to your oncologist.He might suggest

by Beulaparthiban (Jun 2)

Is there any forum to find a life partner who is with CML for CML?
Category: Uncategorised

Replies: 1

Last updated: 2 June 2020
Aeje10327 on 31 May 2020

Category: Uncategorised

Replies: 1

Last updated: 31 May 2020

Lab Question
by AlastairC (May 31)

Don't understand the bit about lab updating. However statistically the difference between one reading of 0.03% and the next of 0.04% is not significant. If it trends up again next time I'd

by Aeje10327 (May 31)

Hi Everyone,
My doctor let me know last week that my 9 month PCR was undetectable. I was obviously thrilled until the final report was uploaded and it read .044. I messaged him and he said
Category: Uncategorised

Replies: 1

Last updated: 31 May 2020
WendyAR on 27 May 2020

Category: Uncategorised

Replies: 4

Last updated: 31 May 2020

Increased Sprycel dosage
by WendyAR (May 31)

I’ll be scheduling a video visit with my Specialist tomorrow so will definitely inquire about the PCR. I went through Test results and don’t see a test with either PCR or BCR-ABL1 ratio

by Buzzm1 (May 31)

WendyAR, you test every three months and your test results include a BCR-ABL1 ratio, expressed as a percentage, normally referred to as a PCR reading. If you aren't familiar with this, you

by WendyAR (May 31)

Hello -
I was told that a blood test they normally don’t order was done suggested increasing dosage. The nurse practitioner called stating that this test showed cancer cells so they want to

by Buzzm1 (May 29)

WendyAR, you certainly deserve to know a lot more as to why your dosage was increased to 140mg. I wouldn't wish 140mg of Sprycel on my worst enemy, nor the extreme dosage of any TKI.
Category: Uncategorised

Replies: 4

Last updated: 31 May 2020
Karthikeyan on 30 May 2020

Category: Uncategorised

Replies: 1

Last updated: 30 May 2020

Sweating problem with tasigna
by Alaina (May 30)

Hi there. I am prescribed Tasigna as well. Although I don't sweat all day or as soon as I start walking, I do experience flushing and sweating if the temperature is a little warm...mid to high 70s

by Karthikeyan (May 30)

Hello all,

I have some minor side effects with tasigna like extremely dry hair, dry skin, and bumbs on face.but the high amount of sweat is something i can't bear.i took imatinib 400 mg for
Category: Uncategorised

Replies: 1

Last updated: 30 May 2020
Alaina on 26 May 2020

Category: Uncategorised

Replies: 4

Last updated: 29 May 2020

Supraventricular Tachycardia
by Alaina (May 29)

Hi Kirk, Thank you for sharing. My cardiologist has me wearing a 24 hour monitor. He suggested I start taking a Calcium channel blocker and if the arrythmia happens again he will refer me to a local

by RC Kirk (May 29)

I had an episode of tachycardia last year when I was hiking in the wilderness. I had visions of dying on the trail, but I survived. I rested for about an hour, trying to get it slowed

by Alaina (May 27)

Alex,
Thank you for sharing that story. I am sorry to hear your sister went through it, but I feel better knowing I am not alone.

by alexmcpee (May 27)

Hi there,
I am on Tasigna and not had that issue yet but my sister had an SVT this year (no pre medical history) we were all worried sick. Apparently it’s very common she had observations for
Category: Uncategorised

Replies: 4

Last updated: 29 May 2020
johnw1001 on 27 May 2020

Category: Organising your life

Replies: 2

Last updated: 28 May 2020

What next for shielding after 30 June?
by alexmcpee (May 28)

The way I look at it the time since diagnosis has hampered life somewhat and I’ve decided not to let COVID add to an already stressful time. Of course I will keep 2 meters from people but I

by Nimbus2 (May 28)

Thank you, John. My summarisation of the situation would be exactly the same as yours.
I think the risk factors that you quote are entirely correct but not mutually exclusive and not mathematically

by johnw1001 (May 27)

Hi All,
I had a telephone consultation with my specialist a few days ago and raised the issue of what next for shielding after 30 June the date that the Public Health England advice runs to for all
Category: Organising your life

Replies: 2

Last updated: 28 May 2020
Craig747 on 27 May 2020

Category: About CML

Replies: 5

Last updated: 28 May 2020

Newly diagnosed with CML and uneducated
by snowman 35 (May 28)

I am a father of two children. I diagnosed before 4 years and I started treatment with Sprycel 100 mg with zerow side effects.

I know that is a little bit difficult to handle it at the

by Rick B (May 28)

Sorry you have joined this club. Scary at first. Confusing also. Starting any TKI has it's own side effects and you will need to be closely monitored. Cancer sucks. But after a while, you

by Craig747 (May 28)

Thank you Coloradoguy. I will be educating myself daily. FYI - I am also a Colorado guy having lived there for many years. I will continue to lean on my family and prayer.

by ColoradoGuy (May 28)

Also read up on Vitamin D3 and K2 among other supplements. There are many posts in the forum about it so do read up and see if it is for you. Take care.
Category: About CML

Replies: 5

Last updated: 28 May 2020
Tanya Cuffe on 26 May 2020

Category: Uncategorised

Replies: 6

Last updated: 27 May 2020

Detectable after being non?
by Tanya Cuffe (May 27)

Thanks for sharing that Rick,good to know others experience same...

by Tanya Cuffe (May 27)

Thank you for that Alastair,I feel quite uninformed still about CML,despite reading heaps about it,and my Haemotologist doesn’t help as she seems to just give me the most basic information...I

by Rick B (May 27)

I have been undetctable and then my last result read "too low to quantity." My hematologist said that sometimes there is a tiny upward bounce and to not wast any time worrying about it.

by AlastairC (May 27)

Tanya, I have seen quite a few posts like yours over the years, and as far as I remember none of them have actually been a long term issue. Very low results (less than 0.01%) turn up occasionally
Category: Uncategorised

Replies: 6

Last updated: 27 May 2020
Rick B on 27 May 2020

Category: Uncategorised

Replies: 0

Last updated: 27 May 2020

New Study for TFR
by Rick B (May 27)

https://www.nature.com/articles/s41375-020-0867-0
Category: Uncategorised

Replies: 0

Last updated: 27 May 2020
lupus on 27 May 2020

Category: Blood tests

Replies: 0

Last updated: 27 May 2020

Blasts in peripheral blood after 12 months of treatment (MMR reached 3 moths ago).
by lupus (May 27)

Hi,
may I ask how often is having 0,5 % blasts in peripheral blood after reaching MMR? I have been tested today and other blood parameters were ok. I am still waiting for todays PCR results, but
Category: Blood tests

Replies: 0

Last updated: 27 May 2020
Poppert on 25 May 2020

Category: Side effects

Replies: 1

Last updated: 27 May 2020

Dasatinib rash
by alexmcpee (May 27)

Hey there yes this is 100% normal and have exactly the same. I am on Nilotinib but all the drugs have the same effect. Some pubic hairs have grown back but it’s defo way less than it used to

by Poppert (May 25)

I’ve been on 100 mg dasatinib since November 2019. I’m having a bit of a problem with rash which won’t go away. It’s small red dots on arms and legs. I’ve also lost
Category: Side effects

Replies: 1

Last updated: 27 May 2020
jhorne1 on 12 May 2020

Category: Uncategorised

Replies: 13

Last updated: 25 May 2020

Dosage reduction
by mariatot (May 25)

Thanks again Scuba for your time and comprehensive responses. Very much appreciated. Will do a search when I get a free moment.

by scuba (May 25)

Hi David,
The key phrase is "C3 complex w/ bioperine". Sabinsa is the company which created the formulation.
The brand you list looks legitimate.

by David Fitz (May 25)

Wild West when it comes to this stuff ... the ads on Amazon and such are enough to confuse anyone.
I just searched Amazon UK for “Sabina curcumin” and this comes up as top result:

by scuba (May 25)

This is the type of Curcumin I take:
https://www.sabinsa.com/products-from-sabinsa/127-curcumin-c3-complex
Sabinsa licenses their formula to several manufacturers. Do an online search for "
Category: Uncategorised

Replies: 13

Last updated: 25 May 2020
Ray Sell on 22 May 2020

Category: Blood tests

Replies: 4

Last updated: 23 May 2020

Lab change and my BCR/ABL numbers went up
by Ray Sell (May 23)

David thank you for all the information.
Ray

by David Fitz (May 23)

PCR is done on a machine and is a complex process, amplifying genetic code thousand and thousands of times. Newer machines employ different ways of doing it, so it’s not always directly

by Ray Sell (May 22)

David
Lab Corp: May 2018 B2A2 .0032 B3A2 0.1482 Sept 2018 B2A2 0.0032 B3A2 0.1123 Jan 2019 B2A2 0.1694
B3A2 0.1482

by David Fitz (May 22)

Hi Ray,
The IS system is not perfect, and not all labs are on the IS anyway and even those that are do not always report results on the IS. Mine, for example, is IS calibrated but reports local
Category: Blood tests

Replies: 4

Last updated: 23 May 2020
sandy craine on 23 May 2020

Category: Uncategorised

Replies: 0

Last updated: 23 May 2020

Your data is helping beat COVID-19
by sandy craine (May 23)

For those of you in the UK who are taking part in the COVID-19 Symptom Study, see the latest update below.
Dr Claire Steves and Professor Tim Spector delve into the latest data from the COVID
Category: Uncategorised

Replies: 0

Last updated: 23 May 2020