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Vikram on 23 July 2020

Category: Uncategorised

Replies: 3

Last updated: 24 July 2020

Benifite of tfr???
by alexmcpee (Jul 24)

All I’d say is with your results so far live your life as best you can as I’ve seen in previous posts you’re undetectable for many years (you’re extremely blessed). You

by Vikram (Jul 23)

Please reply....
Any information
Any suggestion........

by Vikram (Jul 23)

Only information purpose....
In 2018 news
Miristen 126
This is could be a major breakthrough for people who are in remission for CML because there is always a concern that the disease will come back

by Vikram (Jul 23)

What benifite of tfr???
1, I know tki side effects......
2, cost... Tki.....
Only two reason.....
And
risk resistance tki.... ( if resistant... Tki cost high ( imtinib free)
How many patients
Category: Uncategorised

Replies: 3

Last updated: 24 July 2020
Sally Martin on 21 July 2020

Category: Uncategorised

Replies: 8

Last updated: 23 July 2020

Intolerant /resistant of Imatinib. Switching to nilotinib and told no need to fast.
by David Fitz (Jul 23)

Hi Sally,
Homerton is my local hospital and is a great hospital for many things - they helped bring my daughters into the world under very difficult circumstances, so I have a soft spot in my heart

by Sally Martin (Jul 23)

Thanks Sandy. I spoke to the consultant haematologist who confirmed that I should fast to ensure the optimal effect from the drug but said it’s not dangerous to take it with food and would

by sandy craine (Jul 22)

Hi Sally,
This is such a basic mistake by the haematologist I can hardly imagine how they came to that conclusion! I can understand why you have lost confidence in your treatment. You do not say

by Sally Martin (Jul 21)

Thank you! I will do. I have just emailed the hospital and asked to speak to the head consultant, so hopefully I can deal with them going forward.
Category: Uncategorised

Replies: 8

Last updated: 23 July 2020
johnw1001 on 22 July 2020

Category: Drug-food interactions

Replies: 2

Last updated: 22 July 2020

NCCN Guidelines for CML
by scuba (Jul 22)

The NCCN guidelines are an excellent resource for newly diagnosed patients. It's recommendations are solid for those who rely only on their physician and the pharmaceutical company providing the

by alexmcpee (Jul 22)

Not surprised to be honest about the supplements and why for my own personal reasons don’t supplement at all. I supplement only through food veg and fruit, meat. My consultant says all those

by johnw1001 (Jul 22)

Hi All,
Whilst trawling through Amazon books I found that the NCCN -National Cancer Comprehensive Network earlier in 2020 had produced a paperback of Guidlines for Patients .However the same
Category: Drug-food interactions

Replies: 2

Last updated: 22 July 2020
Sherley on 19 July 2020

Category: Children & young people

Replies: 5

Last updated: 21 July 2020

Low hemoglobin and still No MMR
by alexmcpee (Jul 21)

Haha yes I have been asking myself too why it takes so long. But we are all different and our bodies process at different rates. Our disease load is also different from person to person. But so far

by Sherley (Jul 21)

Hi Alex,
yes it’s a lot of pressure wondering why it is taking so long. I really wish to be off this medicine! We are almost the same. Interesting to meet other

by alexmcpee (Jul 20)

Hi Sherley, I have been on meds for approx the same amount of time as you 2 years and 2 months and I too am hovering around 0.1 so not technically MMR but very close. Lots of pressure to reach MMR

by Sherley (Jul 19)

Thank you for getting back. Congratulations on your milestones!!! I asked the director that few months back to lower the dose bc he f the research I’ve done. My bcr has
Category: Children & young people

Replies: 5

Last updated: 21 July 2020
Justine on 16 July 2020

Category: Blood tests

Replies: 5

Last updated: 21 July 2020

BCR ABL numbers going up
by Praa (Jul 21)

Hi,
You go for double dose, insted of 400 mg, take onther 200 mg per day, per day 600 mg, it will work good.
Thanks 😊😊

by Justine (Jul 17)

Thanks for this advice and reassurance. I was not able to make my March quarterly appointment because everything was locked down and I was stuck at a friend's in a different city for March-April

by Justine (Jul 17)

Thanks Alex. I have been on 400mg imatinib since diagnosis. My doctor did request a mutation test which came back negative. I am working on getting in to see a leukemia specialist at Stanford

by ColoradoGuy (Jul 17)

From looking at these results I don't think there is much difference in the last three results. 0.1219 of course makes it seem worse because it is just outside MMR but I think the outlier
Category: Blood tests

Replies: 5

Last updated: 21 July 2020
bendicco on 19 July 2020

Category: Treating CML

Replies: 0

Last updated: 19 July 2020

CBD
by bendicco (Jul 19)

Hi all. I have read that many of you CML folks have been using CBD for the pain (that our oncologists say is not from the CML or the meds!) I was diagnosed almost 4 years ago with CML and am
Category: Treating CML

Replies: 0

Last updated: 19 July 2020
Lavinia on 18 July 2020

Category: Reproductive health

Replies: 3

Last updated: 19 July 2020

Will Sprycel (Desatinib) treatment ruin my eggs?
by Lavinia (Jul 19)

Thank you so much for your reply and sharing your story. It’s made me feel much better!
I don’t know why my doctor has led me to believe this is the case, but he has also admitted he isn

by jmonzione (Jul 18)

Also - your eggs are definitely not ruined!!! The medication will hurt an unborn baby though so please don’t get pregnant on accident. Where do you live and who is telling you this? They are

by jmonzione (Jul 18)

Okay - here is my experience. I was diagnosed at a few months before my 31st birthday. My husband and I were trying for a baby and I wasn’t feeling right so I went to get a physical and was

by Lavinia (Jul 18)

Hi all. I know this question has been posted in various ways already but I was hoping to reach out on this forum as I’m quite distressed about my situation. I was recently diagnosed with CML 4
Category: Reproductive health

Replies: 3

Last updated: 19 July 2020
Sheila Clapson on 9 July 2020

Category: Uncategorised

Replies: 10

Last updated: 18 July 2020

Nilotinib
by Christine R (Jul 18)

I switched from immatinib to Nilotinib due to my BCR not reducing enough. I am now at 0.02 and have no side effects i am aware of. You do get used to the fasting and it has not really caused

by Sheila Clapson (Jul 11)

Thanks for all replies very helpful. I am trying to take tablets at 8am and 8pm with breakfast at 9am and evening meal before 6pm. Sheila

by alexmcpee (Jul 10)

Hi Sheila,
I have been on 600mg Nilotinib for 26 months. I take my morning dose at 8am and 8pm. I find this is the best time that doesn’t really interfere with my life too much. This means I

by Felix (Jul 10)

Hi, I have learnt so much from this site it's a godsend .I Thought Imatinib works the same as Nilotinib So usually Dasatinib is used because it strikes differently ,but check out older posts to
Category: Uncategorised

Replies: 10

Last updated: 18 July 2020
snowman 35 on 13 July 2020

Category: Organising your life

Replies: 3

Last updated: 18 July 2020

Stability of Sprycel at high temperature
by snowman 35 (Jul 18)

Thank you both for your replies! I am little bit ensecure with this subject but I will go anyway!

by jmonzione (Jul 16)

Just go and have fun!!! Keep your pills in a safe spot not in direct sun and nice and dry and you will be fine. Don’t let CML rob you of the experience! If it makes you feel better, I have

by RC Kirk (Jul 13)

Don't worry about the pills! Have a good time!!
Just to be safe you could get a small cooler to keep them in and maybe put a few water bottles in the cooler to act as thermal mass to keep

by snowman 35 (Jul 13)

Hi everyone!

My friends and I were thinking of going to camp at a beach for 4-5 days. I live in Greece and this season we have temperatures near 40 and some days more tham 40.I want to go but
Category: Organising your life

Replies: 3

Last updated: 18 July 2020
jmonzione on 15 July 2020

Category: Reproductive health

Replies: 6

Last updated: 17 July 2020

CML and pregnancy - Sprycel Treatment
by KeriF (Jul 17)

YES! Totally agree. I work in healthcare and I’ve totally stopped referring to CML as leukemia or cancer and instead say “a blood thing.” We have a normal life expectancy, unlike

by jmonzione (Jul 17)

Got it - I think that I look at it a little differently than DCF 🤣 I know this is not something that should shorten my life expectancy and I also know that many people/companies/entities are not

by KeriF (Jul 17)

Massachusetts. Most private adoption agencies as well will require a physical-DCF states that a cancer diagnosis can be harmful to the child because they’d have to cope with potentially losing

by scuba (Jul 17)

A very close friend of our family who has CML gave birth to twins after stopping therapy during her pregnancy. She asked me for an oncology reference back in the day and I referred her to my doctor
Category: Reproductive health

Replies: 6

Last updated: 17 July 2020
gibs1021 on 13 April 2020

Category: Side effects

Replies: 7

Last updated: 16 July 2020

Nilotinib itching
by Cecilia (Jul 16)

Thanks for posting. I was just diagnosed with CML in the chronic phase in May and began imatinib at 400mg. Three weeks into treatment developed large hives. Stopped meds for one week and did a

by VickyK. (Apr 26)

Hi there!

I'm really sorry to hear that for your husband.I do understand as I am also on nilotinib and had the same issue but after a few months the itching went away.May I ask you how many

by Felix (Apr 23)

Hello,sorry to hear your husband is suffering.I had a terrible red itchy rash on Imatinib I could have ripped my skin off ,so much worse in the hot weather .I got rid of it by using a simple

by Aeje10327 (Apr 22)

Hi,
I too had a terrible rash when I was on imatinib. I read about a few people who stopped the medications and then restarted or restarted with steroids (at the direction of their doctor) and their
Category: Side effects

Replies: 7

Last updated: 16 July 2020
nicolaclubb on 4 July 2020

Category: About CML

Replies: 6

Last updated: 15 July 2020

Mutations and treatment free
by nicolaclubb (Jul 15)

Hi Sandra. Thanks for replying
I was diagnosed in accelerated phase / boarder line blast phase. I seem to respond well when starting treatment of Nilotinib but after 4 months my counts increased

by sandy craine (Jul 6)

Hi,
You seem to have responsive disease shown by a a good response to TKI therapy - i.e nilotinib and now ponatinib, so I am puzzled by your consultant saying you have aggressive disease. Am I right

by Nimbus2 (Jul 6)

Hello
I came across an opinion on this matter here:
"Patients who develop imatinib resistance with kinase domain mutations are rarely candidates for TFR."
You will need to read in full.

by alexmcpee (Jul 5)

Hi Nicola,
Wow gosh what a journey you’ve had. I too am on Nilotinib 300mg twice daily and have been for 2 years currently at around 0.1% but not yet broken the MMR barrier. I have had
Category: About CML

Replies: 6

Last updated: 15 July 2020
sandy craine on 15 July 2020

Category: Other conditions

Replies: 0

Last updated: 15 July 2020

Skin rash should be considered as a fourth key sign of COVID-19
by sandy craine (Jul 15)

Data from the COVID Symptom Study shows that characteristic skin rashes and ‘COVID fingers and toes’ should be considered as key diagnostic signs of the disease, and can occur in the
Category: Other conditions

Replies: 0

Last updated: 15 July 2020
Vikram on 28 June 2020

Category: Uncategorised

Replies: 6

Last updated: 13 July 2020

Difference???
by Vikram (Jul 13)

Only information purpose....
In 2018 news
Miristen 126
This is could be a major breakthrough for people who are in remission for CML because there is always a concern that the disease will come back

by Vikram (Jul 13)

After 3 years diagnose
Increase dose 400 to 600...
Early...???
Normal????

by Vikram (Jul 4)

One more question (Only information purpose)
After 3 years diagnose
1780 copies of M-BCR-ABL gene /ug RNA
(Gene copies / ABL Gene copies) :0.25 %
This report means???
DRUG NOT WORKING GOOD???
MY

by Vikram (Jul 4)

M-BCR-ABL.. AND m-bcr-abl
Which one is more dangerous??
M-BCR-ABL (ONLY MENTIONS IN REPORT)
Category: Uncategorised

Replies: 6

Last updated: 13 July 2020
Karthikeyan on 4 July 2020

Category: Uncategorised

Replies: 2

Last updated: 9 July 2020

Generic dasatinib cost
by Karthikeyan (Jul 9)

Hi kruba, are you from tamil nadu.

by Krupa (Jul 9)

My name is Krupa and I am 34 years old. I am a CML patient from last 3 years. I am currently taking Sprycel's Dasatinib 100 mg since Imatinib stopped working. Can you please tell me how can I

by Karthikeyan (Jul 4)

Hello all, as of now there are four pharmas are producing dasatinib in india. Shilpa medicare, Dr.reddys, nacto and hetero drugs. All have patient assistance program.approximately all pharma provide
Category: Uncategorised

Replies: 2

Last updated: 9 July 2020
Karthikeyan on 7 July 2020

Category: Uncategorised

Replies: 3

Last updated: 9 July 2020

To scuba about dasatinib and food
by SorubhMaggo (Jul 9)

I had been on Dasatinib 100mg for close to 4 years now and I had been taking all sorts of fruits and food inclusive of citrus lemon or oranges.
However, as per instructions from BMS it is notified

by scuba (Jul 9)

If by sour you mean "fermented" foods, I have not learned of any evidence that "sour" foods should be avoided while taking dasatinib.
In fact, I regularly eat yougurt, Natto (

by David Fitz (Jul 7)

Nilotinib has a half-life of around 17 hours, so the following shows you how much of the drug is in your system over time. You will need roughly 5 days for it to be virtually eradicated from your

by Karthikeyan (Jul 7)

Hi scuba, today i started to take dasatinib 100 mg. my questions
How long nilotinib takes to completely washout from the system
Taking citrus fruits?
Nurses told me not to take sour fruits and
Category: Uncategorised

Replies: 3

Last updated: 9 July 2020
Libby on 7 July 2020

Category: Side effects

Replies: 1

Last updated: 8 July 2020

Bosutinib side effects
by Diane CW (Jul 8)

Hi Libby
I have been taking Bosutinib for almost two years now. I can’t say I’ve suffered the same side effects as you but it seems for me that every few weeks I can feel quite nauseous

by Libby (Jul 7)

I've been on bosutinib for 16 months. I get on well with it, but have a couple of issues that I wonder if anyone else has. firstly I have a persistent cough in the mornings, which
Category: Side effects

Replies: 1

Last updated: 8 July 2020
bendicco on 10 June 2020

Category: Treating CML

Replies: 8

Last updated: 7 July 2020

CBD
by Crfharris (Jul 7)

Thanks for the information. Once again, it’s so encouraging to hear from others who have been on imatinib for such a long period of time. This site has been so helpful for me.

by andycat (Jul 7)

hello,
I have some pain in my left leg as well, I take imatinib 200 mg a day for cml 14 yrs. this month! So a lot to be grateful for but we really could have done without

by Crfharris (Jun 15)

Olivia,
Thank you for sharing that with me. My pain is also at night. Still just one leg (left also) and arms are fine.
This forum is so helpful . Thanks to everyone who contributes.

by Olivia (Jun 15)

I have been on imatinib for over 10 years now, and I certainly get pains in one leg. It's usually the left leg, but some days (I say days, but it's much more common and annoying in the
Category: Treating CML

Replies: 8

Last updated: 7 July 2020
Karthikeyan on 3 July 2020

Category: Uncategorised

Replies: 0

Last updated: 3 July 2020

Switched to dasatinib from nilotinib
by Karthikeyan (Jul 3)

Hello all,i just switched to 100 mg dasatinib per day.prior i took nilotinib 400 mg per day.Though I'm in mmr, my doctor want to put me in 100 mg dasatinib at least for the initial months.im going
Category: Uncategorised

Replies: 0

Last updated: 3 July 2020
sandy craine on 12 June 2020

Category: Treating CML

Replies: 3

Last updated: 26 June 2020

iCMLf 4 Webinars for June/July - CML during the COVID-19 crisis
by sandy craine (Jun 26)

For details of one of the next iCMLF webinars on July 2nd and how you can access it see below:
On July 2nd Professor Gianantonio Rosti will be sharing his experience and perspectives.
Management

by sandy craine (Jun 25)

Hi Justine,
Try logging on to iCMLf website- I think they are probably available.
http://icmlf.org
Sandy

by Justine (Jun 24)

Hi Sandy, I missed today's, are the webinars being recorded and if so how do we access it? Thanks

by sandy craine (Jun 12)

The International CML Foundation is holding a series of four webinars focused on the care of people with CML during the COVID-19 crisis.
Beginning in late June, for four weeks, we will be hosting
Category: Treating CML

Replies: 3

Last updated: 26 June 2020