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Sando on 14 April 2019

Category: Uncategorised

Replies: 6

Last updated: 15 April 2019

Mum newly diagnosed
by Sando (Apr 15)

Thank you very much for your response and I hope you are doing well.

by Felix (Apr 14)

Hi Sando,sorry to hear about your Mum but try not to worry hopefully the worst bit is over the dreaded bone marrow test that is the worst bit for me. ,I know it's a huge shock when the word

by Sando (Apr 14)

Thank you for your reply, hoping and praying this is the case.

by David Fitz (Apr 14)

Routine tests are the best way to discover you have CML, because it usually means it’s caught well before it becomes symptomatic. In all likelihood, the imatinib will get it under control nice
Category: Uncategorised

Replies: 6

Last updated: 15 April 2019
Felix on 4 March 2019

Category: Uncategorised

Replies: 12

Last updated: 13 April 2019

Scuba 50 or 70 Dasatinib
by Felix (Apr 13)

Yes I am going to do just that ,print some off and show her on my next visit ,thank you .

by scuba (Apr 13)

Show your doctor the literature and research articles you have seen posted here on the new findings regarding dose.
Remind her biology of cancer is not the same as biology of bacteria or virus

by Felix (Apr 13)

Hi, my Doc was horrified when I told her I was only taking 50mg instead of 70 she subscribed ,her gob dropped haha,I can just imagine her face when I suggest 20 mg in the future,she will throw me

by Felix (Apr 13)

Hi Kat ,that is so good to hear,thank you very much ,Denise.
Category: Uncategorised

Replies: 12

Last updated: 13 April 2019
David83 on 30 January 2019

Category: Uncategorised

Replies: 9

Last updated: 13 April 2019

An Unconventional Nilotinib Reduction
by David83 (Apr 13)

Thanks for the info Kat and Buzz.
I think I’m pretty set on requesting a switch to sprycel and seeing how that works. It was discussed briefly but the decision was delayed so more research and

by Buzzm1 (Apr 12)

David, Sprycel 50mg, at most; if Sprycel is going to work for you it will work at 50mg. or less. Easier on the counts too.

by kat73 (Apr 11)

Well, that's another point in Sprycel's favor. I was doing OK on Gleevec (CML-wise) but I was definitely a turtle. When I switched to Sprycel, my PCR zoomed down quite a bit,

by David83 (Apr 11)

Thanks Kat, it’s difficult to know what the best way forward is but my concern is that I’m somewhat time limited work wise. I work in an industry that requires strict medical checks and
Category: Uncategorised

Replies: 9

Last updated: 13 April 2019
Ontasigna on 12 April 2019

Category: Treating CML

Replies: 2

Last updated: 12 April 2019

Nilotnib & Lemon
by Ontasigna (Apr 12)

Thanks David!! I mean not full glass of lemon juice (90% water and 10% lemon).
Some studies say - to avoid citrus fruits while on Nilotnib. Has any one tried lemon?

by David Fitz (Apr 12)

Yes, absolutely fine.
My question would be why you would want to in the first place!! 🤢 I don't think I could stomach a glass of lemon juice!
David.

by Ontasigna (Apr 12)

Hi all,
Is it ok to drink Lemon juice while on Nilotnib?
Kindly suggest.
Category: Treating CML

Replies: 2

Last updated: 12 April 2019
Dennis on 10 April 2019

Category: Uncategorised

Replies: 19

Last updated: 12 April 2019

25 years with CML
by ThomasS (Apr 12)

Dennis, Yes I had several side effects from 100mg of Sprycel. I had a much easier time with Gleevec, but it stopped working after 10 years. Terrible dreams all night long with 100mg Sprycel, no

by Dennis (Apr 12)

Ah sorry I’ve got my Tanya Cat mixed up with my Kat 73. 😀

by Tanya Cat (Apr 12)

Dennis I have not had stomach problems just mental issues and hormonal ones.Think I will stick on it too.Having said that,my blood tests are not improving but because I tolerate Glivec better than

by Dennis (Apr 11)

Tanya
yes I will stay on Imatinib. For many years it did cause me stomach problems, including diarrhoea. 12 months ago I went into A&E with severe stomach pains and was told I had a stomach
Category: Uncategorised

Replies: 19

Last updated: 12 April 2019
Tanya Cat on 17 March 2019

Category: Uncategorised

Replies: 18

Last updated: 10 April 2019

Do you know how you got CML?
by Tanya Cat (Apr 10)

Heaps of reading material here with excellent information!Thanks heaps for all of that!

by r06ue1 (Apr 10)

I wrote an article on this a while back. While I now believe that there is no direct link between Benzene and CML (other blood cancers most definitely) it does show you how toxic we have

by Andy (Apr 7)

Hi , i am not sure about the reasonbut i worked night shift for 2 years and with lot of work stress and irregular sleeping patterns could cause my illness . I have thought about this round and round

by Poppert (Apr 6)

I suspect something like stress or mental trauma for me too.
I had a personal crisis in 2013. It was devastating to me and it affected me both mentally and also indirect physically. I didn’t
Category: Uncategorised

Replies: 18

Last updated: 10 April 2019
Andy on 5 April 2019

Category: Side effects

Replies: 6

Last updated: 10 April 2019

Joint and muscle discomfort
by sorin real (Apr 10)

I'm on Tasigna. Being an inveterate consumer of curcumin and being curious to know if it is appropriate to take it with Tasigna, I wrote an email at Novartis headquarters in Switzerland.

by scuba (Apr 10)

Just to be clear.
Magnesium does not need to be taken with vitamin D. Magnesium is water soluble, vitamin D is not. Vitamn D is long lived in the blood (half life = 2 months). As long as vitamin D

by bendicco (Apr 10)

Just my thoughts, Magnesium should be taken with fit D. My oncology pharmacist has done research on Curcumin and warned me NOT to take its it may interfere with the med. I had been taking it for

by scuba (Apr 8)

Magnesium and Curcumin !!
Category: Side effects

Replies: 6

Last updated: 10 April 2019
Evoabbi1989 on 8 April 2019

Category: Food & fitness

Replies: 2

Last updated: 8 April 2019

Supplements
by cmljax (Apr 8)

Exercise, exercise, exercise. Whole foods diet with plenty of veggies for natural vitamins. Sunshine for Vitamin D

by scuba (Apr 8)

Do a search using the search box above (next to Account) for "supplements", "fatigue". You will see many posts on the subject. It has been covered extensively. If you have a

by Evoabbi1989 (Apr 8)

Hi All
I'm currently on 400mg of Imatinib (Gleevec) almost 5 months in. Wondering if anyone can advise on supplements for dry skin, fatigue and something to boost immune system?
Also what
Category: Food & fitness

Replies: 2

Last updated: 8 April 2019
Vijay Kumar Verma on 5 April 2019

Category: Treating CML

Replies: 5

Last updated: 7 April 2019

PCR@21 MONTHS
by Vijay Kumar Verma (Apr 7)

Side effect:- fatigue,swelling (moderate).sometime calf muscle stiffness with high decree of pain.6/4/2019 cbc report:-hg 11.20,rbc 3.30,pcv 32.50,mcv 98.50,mch 33.90,mchc 34.40,rdw 15.50,absolute

by Vijay Kumar Verma (Apr 6)

IRMA mutation test jan 2019,no mutation detected.

by Job Guerra (Apr 5)

Have you had mutation testing? Just wondering because our numbers are similar and I switched to Nilotinib from Dasatinib. Not a lot of research for 2nd gen TKI to another 2nd gen as most people

by Vijay Kumar Verma (Apr 5)

Next visit on 8th april.i was on nilotinib for 9 months, from june 2017 to feb 2018.3rd month pcr was 4.15%,6th month pcr was 1.77%,12th month pcr was 1.108%,18th pcr 1.016%, CML CP
Category: Treating CML

Replies: 5

Last updated: 7 April 2019
Sarah63 on 7 April 2019

Category: Treating CML

Replies: 0

Last updated: 7 April 2019

What ever happened to Fish Oil Trials?
by Sarah63 (Apr 7)

Anyone here familiar with the preclinical trials on fish oil and derivatives that cured leukemia in mice by killing the Leukemia Stem Cells?
Category: Treating CML

Replies: 0

Last updated: 7 April 2019
ThomasS on 20 March 2019

Category: Uncategorised

Replies: 14

Last updated: 7 April 2019

Retirement in the US
by Buzzm1 (Apr 7)

shweflen (U.S. LLS forum) purchased Imatinib Mesylate 90 X 100mg under the Cigna Medicarte Drug Plan for $395.42 which would likely indicate a roughly $500 price for 30 X 400mg. shweflen

by Tbrand (Apr 7)

I found on GoodRx several US pharmacy’s offering generic Imatinib 30 400mg pills for around 700.00. That looks positive.

by onekayaker (Apr 3)

Tbrand,
Marks Marine Pharmacy is Canadian based (brick & mortar) and ships to you in the US. My cancer mentor who lives here in Texas buys her gleevec there. You can buy the canadian

by Tbrand (Apr 3)

My research shows I can save min. 50% buying in Canada. I would rather use the savings for quarterly vacations in Canada. I do not qualify for subsidies and am not ok paying more. The system stinks
Category: Uncategorised

Replies: 14

Last updated: 7 April 2019
Gian P on 5 April 2019

Category: Organising your life

Replies: 2

Last updated: 6 April 2019

CELL PHONES RADIATION WHILE CHARGING
by Nimbus2 (Apr 6)

The advice from the United Kingdom National Health Service appears at the link below:
https://www.nhs.uk/conditions/mobile-phone-safety/
There appears to be no conclusive evidence as to whether

by Harriet (Apr 6)

hi Gian,
i have actually been conscious of cell phones for years before diagnosis,it gets turned off at night and is not allowed in my bedroom,it is charged in a little room i have for hobbies and

by Gian P (Apr 5)

Does anyone take any extra precautions over this? when is not preferable to charge the phone? In the car? Next to your bed ( while sleeping )? Any of you knows of any founded researches? I found out
Category: Organising your life

Replies: 2

Last updated: 6 April 2019
bendicco on 1 April 2019

Category: Treating CML

Replies: 20

Last updated: 6 April 2019

And the anxiety builds AGAIN!
by cmljax (Apr 6)

YAY!!!! As Scuba would say, you are not going to die from CML - that is a tremendous number. next stop MR4.5 or better and probably as soon as the next PCR, which will still make you anxious :).

by Harriet (Apr 5)

yes it feels good,but the brain never stops he mentioned a slight elevation in s-albumin level and s-alat plus kalsium,but he said it was nothing to worry about,but the brain latches on to these

by bendicco (Apr 4)

So happy Harriet!!!!

by kat73 (Apr 4)

Great news, Harriett! Onward and downward!
Category: Treating CML

Replies: 20

Last updated: 6 April 2019
scuba on 5 April 2019

Category: About CML

Replies: 1

Last updated: 5 April 2019

'Hot off the press's ... '
by Damian Gabilondo (Apr 5)

Hello, I understand there are already ongoing studies of Inf + TKI, and there are also others of TKI + antibiotic, what I did not find are results, thanks for all the information. Sorry for my

by scuba (Apr 5)

C/EBPβ is a critical mediator of IFN-α-induced exhaustion of chronic myeloid leukemia stem cells.
https://www.ncbi.nlm.nih.gov/pubmed/30755436
Newly published research is showing that interferon-a
Category: About CML

Replies: 1

Last updated: 5 April 2019
Gian P on 3 April 2019

Category: Children & young people

Replies: 15

Last updated: 5 April 2019

Platelets level low
by Vijay Kumar Verma (Apr 5)

SCUBA you are great

by Gian P (Apr 4)

Thank you for your thorough explanation, so much that I don’t know yet:/
i will definitely try Beet and wheatgrass... these days flavor is not a priority, and will look into the other

by Gian P (Apr 4)

Thank you sir, i will certainly follow your advice and monitor my CBC closely, Platelets is the only test that fluctuate so much especially with Sprycel, i will tak to my Oncologist about reducing

by scuba (Apr 4)

Study the figures in the article below and you will get a feel for blood cell formation:
https://www.thermofisher.com/us/en/home/life-science/antibodies/antibodi...
Anytime a cell divides - and this
Category: Children & young people

Replies: 15

Last updated: 5 April 2019
grells on 2 April 2019

Category: Uncategorised

Replies: 3

Last updated: 3 April 2019

CML - Nilotinib - Low Ferritin
by grells (Apr 3)

Hmmm. Interesting. I am just menopausal now. And was a regular blood donor for many years before diagnosis 3 years ago. I have been taking over the counter supplements (

by scuba (Apr 3)

I have mild anemia due to lower red blood cell count which led to lower hemoglobin and hematocrit levels. I supplemented with a heme based iron supplement in order to "fill up" as many of

by cmljax (Apr 3)

I have been on Tasigna for 2 1/2 years and never had any below normal blood counts, so don't really have any advice. With you being undetectable for 18 months, have you been able to reduce

by grells (Apr 2)

Hello all. It's been a long time since I popped in here, but do spend a lot of time on the Facebook group. I have a question and wonder whether any of you have any thoughts/
Category: Uncategorised

Replies: 3

Last updated: 3 April 2019
snowman 35 on 31 March 2019

Category: Uncategorised

Replies: 4

Last updated: 1 April 2019

What about hand made cereal bars?
by snowman 35 (Apr 1)

I asked him about one year before if I have to look to the ingredients for pieces of grapefruit and told that this not necessary... Maybe I anderstood wrong.... I Spoke with him yesterday and told

by kali (Apr 1)

I meant to add that every winter I get a type of orange that are a combination of orange and grapefruit. They are awesome! I eat them and they have not hurt my PCR numbers.
I only do that for

by kali (Apr 1)

I don’t know the answer to your question, however, I would quit eating them to be sure.
Others on here who know more than me about interactions with TKI’s might chime in.
I would also

by kali (Apr 1)

I don’t know the answer to your question, however, I would quit eating them to be sure.
Others on here who know more than me about interactions with TKI’s might chime in.
I would also
Category: Uncategorised

Replies: 4

Last updated: 1 April 2019
Gitel on 15 March 2019

Category: Side effects

Replies: 17

Last updated: 1 April 2019

Lymphoma and CML. Anybody know anything?
by kali (Apr 1)

Very happy for you that it is not lymphoma!! What a relief you must feel. I wish you the best!

by onekayaker (Mar 30)

SWEET !!! Great news G. Very happy for you

steff

by mozart8 (Mar 29)

very glad to hear it is not lymphoma!

by kat73 (Mar 29)

Hurray! Hurray! Hurray! I know what you mean about unicorn-ness. My bazillion year old MIL has disasters, but they all get diagnosed and - amazingly - FIXED. And she just
Category: Side effects

Replies: 17

Last updated: 1 April 2019
Nimbus2 on 31 March 2019

Category: Uncategorised

Replies: 0

Last updated: 31 March 2019

Vitamin D
by Nimbus2 (Mar 31)

The UK Consumer Association magazine, Which?, takes a very negative view on the efficacy of vitamins and supplements. Vitamin D is the sole exception.
I found some staggering claims through an hour
Category: Uncategorised

Replies: 0

Last updated: 31 March 2019
Rick B on 27 March 2019

Category: Uncategorised

Replies: 2

Last updated: 28 March 2019

BCR-ABL1 latest score and a question
by Rick B (Mar 28)

Thank you!

by AlastairC (Mar 27)

Hi Rick,
The difference between your two numbers is within the range of accuracy of the BCR-ABL test. The fact that they effectively the same number is not an issue - you have got below 0.1% in 6

by Rick B (Mar 27)

I have greatly appreciated this site since I was diagnosed last summer. I have a question about the drops in my qPCR quantitative score.
BCR-ABL1 at diagnosis = 12.66%. Score after
Category: Uncategorised

Replies: 2

Last updated: 28 March 2019