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Long-Term Outcome Of Nilotinib 400 Mg Twice Daily In First-Line Treatment

Considerations for Successful Treatment-free Remission

Pancreatic enzyme elevation in patients treated with nilotinib

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sandy craine on 30 March 2018

Category: About CML

Replies: 3

Last updated: 5 April 2018

PinnedUK CML Patient Day 2018
by sandy craine (Apr 5)

There will be a link for the webcast. I know last year there were some problems but hopefully, this year there will be more successful links. When the NCRI CML Subgroup finalises the details for the

by andycat (Apr 4)

How do we access the web cast for the meeting in Sept. at Brum?It was a nightmare trying to find the last event there .... no sat nav.... I have cml

by sandy craine (Mar 30)

We now have a confirmed date and place for the 2018 UK CML Patient Day. For the moment the date and place are the only details that have been confirmed.The Agenda and Specialist Speakers will be
Category: About CML

Replies: 3

Last updated: 5 April 2018
kylelawkc on 21 April 2018

Category: Blood tests

Replies: 3

Last updated: 21 April 2018

Nilotinib—Hypopigmentation
by VioS (Apr 21)

Hii, i have skin lightening on my forhead after 4 years on imatinib, now after 2 months on nilotinib its better, butt i don t think it s going to disapper. i have tried many treatments, with no

by cmljax (Apr 21)

Hi:I started on Tasigna 600 mg/day in October 2016. I had a number of skin issues, including squamous cell carcinomas, folliculitis, mild petechia. occasional pimples (I am 65 and hadn't had a

by cmljax (Apr 21)

Hi:I started on Tasigna 600 mg/day in October 2016. I had a number of skin issues, including squamous cell carcinomas, folliculitis, mild petechia. occasional pimples (I am 65 and hadn't had a

by kylelawkc (Apr 21)

Hi AllI’ve been on Nilotinib 600mg per day since January this yearI’m wondering if there is anyone who’s also taking it experiences skin lightening?Thank you
Category: Blood tests

Replies: 3

Last updated: 21 April 2018
robert mcadie on 5 April 2018

Category: Blood tests

Replies: 12

Last updated: 21 April 2018

Consultation
by cmljax (Apr 21)

So Robert is trying cessation and not dose reduction? Whatever the case, please keep us informed. We'll be keeping our fingers crossed

by robert mcadie (Apr 20)

Got word this morning that Robert is going drug free for a try. Also to stop us having to travel for 5 hours for a blood test, which will have to be done every four weeks our local medical center are

by cmljax (Apr 13)

I started on Tasigna 600 mg/day 18 months ago. I had a series of very bad and very unusual side effects, so once I hit MMR (.1%), we began to reduce my dose, first to 450, then to 300 and finally to

by T and M (Apr 12)

We are from Campbetown but our main source is the New Victoria Hospital in Glasgow. Our clinic specialist who is beyond belief wonderful works from clinic P there and our whole team of doctors
Category: Blood tests

Replies: 12

Last updated: 21 April 2018
Victor Dax Jose on 12 August 2017

Category: Uncategorised

Replies: 27

Last updated: 19 April 2018

HI I'm Dax from the Philippines and was recently diagnosed with CML this year I just started taking Imatinib but its expired for 10 years
by sham85131 (Apr 19)

My father also diagnosed with CML chronic phase 3 month ago and he is prescribed Imanib 400 tablet ( http://5.imimg.com/data5/GF/HV/MY-4207000/imanib-400mg-intas-imatinib-tablet-250x250.jpg )

by Debbie Ann Suarez (Apr 17)

hello po Victor, pwede malaman supplier mo sa gamot?need din kasi ng mother inlaw ko sa pinas..salamat po

by Debbie Ann Suarez (Apr 17)

hi david..yes shes in the Philippines now.

by Debbie Ann Suarez (Apr 17)

hi rose my mother in law needs that medicine..may i know where we can buy ?pls help thanks
Category: Uncategorised

Replies: 27

Last updated: 19 April 2018
Justine on 14 April 2018

Category: Organising your life

Replies: 17

Last updated: 19 April 2018

Working
by JohnFromChicago (Apr 19)

Its ok I did not really expect too much from them. I feel like when you work for a big fortune 500 company in the US they do not give much special treatment or compassion to anyone for any reason.

by beno (Apr 17)

I'm fine in the mornings, but the afternoons are a waste for me and it gets worse as the week goes on. By Thursday and Friday afternoon, I feel terrible every week. Mental activity seems to

by LouiseS (Apr 17)

Sorry to hear how you were treated John. It can only have added to your anxiety.How are you feeling now on the reduced dose? Best , Louise

by JohnFromChicago (Apr 16)

My company did not offer any "options" when it came to my diagnosis. They let me work from home for 1 week to deal with the anxiety of it. Then I got an email from HR saying I had to come back into
Category: Organising your life

Replies: 17

Last updated: 19 April 2018
janlyn28 on 17 April 2018

Category: Uncategorised

Replies: 10

Last updated: 19 April 2018

Update on previous post
by LouiseS (Apr 19)

Been following your news about your son. so pleased to hear the good news. All the best to you and to your son,Louise

by janlyn28 (Apr 19)

Another update... The Onc called today and we had some good news! PTL!! His PCR retest results showed that his PCR dropped from .28 to .19. So his Onc and the transplant dr. are saying to put the

by janlyn28 (Apr 19)

Thanks, Scuba for that info. I plan to talk to his dr.. about the vitamin D and the curcumin at his next appt. I did wonder if the curcumin would adversely effect his platelets, since his

by scuba (Apr 18)

Most doctors won't know much about vitamin D and its role in cancer, immune response and heart health. But he might if he reads.Ideal level for people with cancer (or people in general) is greater
Category: Uncategorised

Replies: 10

Last updated: 19 April 2018
Romo on 10 April 2018

Category: Uncategorised

Replies: 11

Last updated: 19 April 2018

I heard that people with CML have a sense of humor..
by Justine (Apr 19)

Did you hear about the skeleton who didn’t go to the prom? He had no body to go with. He didn’t invite anyone because he didn’t have the guts.

by Romo (Apr 17)

Alligator or Crocodile,you can distinguish an alligator from a crocodileby paying attention to whether the animal seesyou later or in a while...internet.

by Romo (Apr 15)

How do you Top a Car?“You tep on the break tupid” ... Romo

by Tbrand (Apr 14)

A person boarded a plane in Frankfurt headed to London and sat themselves in first class. The flight attendant approached the person and said “ you have a coach seat and will need to move.” The
Category: Uncategorised

Replies: 11

Last updated: 19 April 2018
vonnie on 18 April 2018

Category: Treating CML

Replies: 1

Last updated: 18 April 2018

nausea and diarrhoea
by vonnie (Apr 18)

hi again to all been on imatinib for about 10 months and all going very well no real probs but had a very bad day today with both the above and wondering could this be a side effect or is it more
Category: Treating CML

Replies: 1

Last updated: 18 April 2018
bp3 on 17 April 2018

Category: Treating CML

Replies: 6

Last updated: 18 April 2018

pcr rising:Need Advice
by bp3 (Apr 18)

Thanks, that will be done in a week or so with BMB.

by janlyn28 (Apr 18)

They did a mutations test on my son and did it through blood test. No biopsy done.

by David Fitz (Apr 17)

I agree with Scuba on this. Get a mutation analysis done - which requires a bone marrow biopsy (I think, in all cases). No big deal for the procedure, but it may help shine a light on the issue.

by Romo (Apr 17)

Generally transplants are the last option.Only done if all else fails.Try everything else before you decide to gothis route. They are better at this now, and you are stillin the age range for
Category: Treating CML

Replies: 6

Last updated: 18 April 2018
Sunshine15 on 3 June 2014

Category: Uncategorised

Replies: 8

Last updated: 18 April 2018

Help with food restrictions on Nilotinib,trade name Tasigna
by David Fitz (Apr 18)

Nope. It really is just water only. Some people will drink things like a herbal tea, but that is against what the manufacturer say.“Mostly” water isn’t really good enough. The reason it’s important

by Philiptibbs (Apr 18)

What about watermelon ? It's mostly water. Could someone eat this during fasting hours ?

by cdw5000 (Jun 4)

Hello LJ, I've been on Tasigna now for 3.5 years. I find a 10AM/10PM schedule works quite well for me. As for the 12 hours, Sandy's advice is spot on - consistency is better to maintain the plasma

by sandy craine (Jun 4)

Hi Laura, your mum can drink plain water during the fasting hours. It is food that causes problems with nilotinib. This is because the amount of drug metabolised is increased if taken with food-
Category: Uncategorised

Replies: 8

Last updated: 18 April 2018
Philiptibbs on 11 April 2018

Category: Drug-drug interactions

Replies: 24

Last updated: 17 April 2018

Being in the Sun while on Nilotinib/Tasigna ?
by beno (Apr 17)

Another byproduct of sensitivity to the sun and wearing sunscreen is a reduction in the amount of vitamin D in the body. I have to supplement 5,000 IU daily and I'm still on the low side of

by David Fitz (Apr 15)

Great plan! I hope you and your wife have an amazing time.

by Justine (Apr 15)

Hooray!

by Philiptibbs (Apr 15)

Thank you so much for your input. I highly appreciate your experiences and I wish you nothing but the best and I will be buying the UnderArmour UPF clothing for my Cruise and some SPF50 sport
Category: Drug-drug interactions

Replies: 24

Last updated: 17 April 2018
SUHAS D.S. on 7 November 2017

Category: Treating CML

Replies: 25

Last updated: 16 April 2018

Recently diagnosed with CML July 2017
by SUHAS D.S. (Apr 16)

Thanks Alastair for detail note got your view.thanks a lot for taking time in replying. Regards Suias

by SUHAS D.S. (Apr 16)

Thanks Scuba for a swift and detail note this gives me a positive strength....thank you so much this group has been supporting me in a great way.Thanks a lot for your time in writing me this.God

by SUHAS D.S. (Apr 16)

Thanks Scuba for a swift and detail note this gives me a positive strength....thank you so much this group has been supporting me in a great way.Thanks a lot for your time in writing me this.God

by AlastairC (Apr 16)

Hi Suhas. This is a good result. Your result is very low and reducing. By Romo's way of thinking above, your "debt" just reduced by 33% from $18 to $12. Anything below 0.01% can occur pretty randomly
Category: Treating CML

Replies: 25

Last updated: 16 April 2018
LouiseS on 14 April 2018

Category: Uncategorised

Replies: 3

Last updated: 15 April 2018

Muscle pain treatment
by LouiseS (Apr 15)

Thank you so much Sandy. The curcumin has really helped his puffy eyes so hopefully the magnesium will do as great a job with the muscle pain.

by sandy craine (Apr 15)

Hi Louise,My chiropractor is truly amazing and has helped me so much with muscle/ joint pain and effects of old injuries etc. It could be his dose reduction has has some effect but from what I have

by LouiseS (Apr 14)

Hi My husband is now into his second week on 50 mg instead of 100 mg Dasatinib. The night before he reduced his dose he lifted bikes up high to attach to the ceiling and thinks he strained a
Category: Uncategorised

Replies: 3

Last updated: 15 April 2018
Meg on 11 April 2018

Category: Uncategorised

Replies: 4

Last updated: 15 April 2018

Advice please!
by sandy craine (Apr 15)

Hi,I am pretty sure your doctor would not encourage you to stop therapy if your PCR result had not shown you to have had a stable molecular response- at least MMR (0.1%) for some years. It would be

by Meg (Apr 11)

Thank you so much for your very informative reply, such great news on your friend I have been on bosutinib for over 2 years

by scuba (Apr 11)

Meg,Need more information:1. What is your current PCR level?2. When were you diagnosed, how long have you been taking TKI's? (i.e. Bosutinib or other)?3. Are you pregnant now?I have a close friend

by Meg (Apr 11)

Hi everyone I'm a 40 year old cml patient currently on bosutinib 500mg. I stopped taking them over 30 days ago in the hope of getting pregnant, I so desperately want a baby and would then return to
Category: Uncategorised

Replies: 4

Last updated: 15 April 2018
sandy craine on 14 March 2012

Category: Uncategorised

Replies: 5

Last updated: 15 April 2018

Acid Reflux/Heartburn
by teddyb (Apr 15)

Thanks for the tip Sandy, will give it a try for my indigestion when eating fatty or spicy food, got nothing to lose :)Teddy

by sandy craine (Mar 18)

Hi Lydia, I take one capful in an 8oz glass of water twice a day before meals. Your can increase this to a glass before every meal depending on how severe the acid reflux is. I find the taste of

by Lydia (Mar 17)

Can a daily drink of ACV help one pick the winning numbers on the lottery? Seriously though, ACV is supposed to have a wide range of healing properties. I had a little book about the uses of vinegar

by EmChops (Mar 17)

I have just checked with my trial nurse and she said it is fine to have on Nilotonib. Thanks for the tip, I'll let you know how I get on Emma x
Category: Uncategorised

Replies: 5

Last updated: 15 April 2018
Chuckster on 14 April 2018

Category: Side effects

Replies: 11

Last updated: 15 April 2018

New Blood Work Numbers ( 2nd set of Results)
by Chuckster (Apr 15)

Thanks Sandy.I have the shortness of breath but have not experienced any chest pain at allAlso, no cough at all.I am scheduled for another chest x-ray in approx 2 weeks to see if the pneumonia has

by sandy craine (Apr 15)

Hi Chuckster,You sound like you are/have experienced some of the higher grades of side effects to TKI therapy and may well be intolerant of Sprycel. According to the manufacturer's website, some of

by Chuckster (Apr 15)

Thanks for the info! Chuck.

by chevyflame (Apr 15)

Hi Chuck,I had similar breathing issues and was eventually diagnosed with a severe pleural effusion although I had complained about the breathing issues from the start of taking Sprycel. Started at
Category: Side effects

Replies: 11

Last updated: 15 April 2018
Parklife on 25 October 2014

Category: Side effects

Replies: 21

Last updated: 13 April 2018

Joint and Muscle pain?
by kat73 (Apr 13)

I hope you have time to see your primary care doc before the trip - if it is erythema nodosum, you need to jump on it quickly with professional medical guidance. It may involve a punch biopsy,

by Joynews (Apr 13)

Thanks for the feedback. I have been checked for Deep vein thrombosis, don’t have that, thank goodness. I am taking magnesium supplements as well as drinking tonic water (quinine supposedly

by kat73 (Apr 10)

Coupla things come to mind: red painful lumps in your calves sounds a lot like erythema nodosum, which is annoying but treatable and eventually goes away. Bone pain/muscle spasms - maybe

by Joynews (Apr 10)

Hello to alli was diagnosed with CML 11 months ago. I started on 400mg of imatinib. My WBC went too low after 2 months and I had severe pain in my upper thigh. I was switched to
Category: Side effects

Replies: 21

Last updated: 13 April 2018
Nj on 11 April 2018

Category: Uncategorised

Replies: 9

Last updated: 12 April 2018

New to CML
by LouiseS (Apr 12)

Welcome to this community. I hope you will find it a valuable resource for information and support.My husband was diagnosed last Sept. The first couple of months were rough at times dealing with the

by T and M (Apr 12)

Welcome to the forum. My husband was diagnosed last September. He is 46 and we have two kids 10 and 11. It will take time to digest, give yourself the time. Stay positive

by Romo (Apr 12)

The difficulty for the CML patient is the answer we want, the medical communitycan’t give us. We want to know why we have this and can it be cured?The doctor doesn’t know.So we take our medicine and

by AlastairC (Apr 11)

For me and I think many others an important part of staying positive after diagnosis is to get to a point where you understand enough to manage your uncertainty and anxiety. There is a huge amount of
Category: Uncategorised

Replies: 9

Last updated: 12 April 2018
Justine on 7 April 2018

Category: Blood tests

Replies: 8

Last updated: 12 April 2018

12 month PCR still no MMR
by Justine (Apr 12)

Thank you Cmljax!

by cmljax (Apr 10)

Justine:Your trend is right and you could very easily reach MMR on your next test. This isn't a race, but reaching MMR and better does feel good. As long as you continue to trend down, you

by Justine (Apr 9)

Thank you, Romo, Alastair, Kat, and David. It is really reassuring. I look forward to some time in the future when I will be able to help people as you help me and so many others. Justine

by David Fitz (Apr 8)

Hi Justine, You’re right that the guidelines say treatment change should be considered is greater than 0.1% at 12 months.But you’re trend is downwards, and 0.2% is not really very far from 0.1%
Category: Blood tests

Replies: 8

Last updated: 12 April 2018
Josie on 10 April 2018

Category: Treating CML

Replies: 5

Last updated: 11 April 2018

CML Blast Crisis
by Tbrand (Apr 11)

I admit, I was a weird specimen. They were a bit perplexed. I could have jogged around the hospital if they let me. Most importantly I was told “ relax, you won’t die from this.” Two weeks into

by sandy craine (Apr 11)

Did you have your blast cell count at diagnosis. I would venture that you were in accelerated rather than blast phase - which is over 30% blast cells in peripheral blood or marrow- although some

by Tbrand (Apr 10)

I was diagnosed ac/blast in 12/2014. 94,000 WBC, 42 PCR, but spleen was normal as well as other blood work. Hospitalized for two days and back to work next day. Strange thing, WBC count dropped

by sandy craine (Apr 10)

Hi Josie,Blast phase CML is a very difficult disease to treat... sometimes dasatinib is used, but this might not control the disease. High dose chemotherapy is used to get control of the blast cell
Category: Treating CML

Replies: 5

Last updated: 11 April 2018