TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

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cmljax on 3 May 2018

Category: Uncategorised

Replies: 1

Last updated: 8 May 2018

CRISPR
by r06ue1 (May 8)

It is still in its infancy but they have had success in curing kids with ALL (still requires a transplant).

Eventually, as the technology and understanding improves, this will

by cmljax (May 3)

60 Minutes here in the US ran a story on this last Sunday and it sounded like the next great medical breakthrough, even for cancer. I would love to hear from the braniacs here whether or not
Category: Uncategorised

Replies: 1

Last updated: 8 May 2018
MartinZA on 2 May 2018

Category: Treating CML

Replies: 4

Last updated: 8 May 2018

Hello imatinib!
by pianogrl44 (May 8)

I’ve been on 400 mg of Imatinib since October 2015 and honestly, I have found the side effects quite minimal. I experienced the horrible bone pain people talk about for a couple weeks when I

by Justine (May 4)

Hi Martin, thanks for posting this. I have a few thoughts in response.
I've been on imatinib for about 13 months now after diagnosis April 2017. Unfortunately I do have the dreaded puffy eyes and

by LouiseS (May 4)

Hi Martin
just wanted to wish you best of luck on the new drug and thanks for sharing your feelings. I hope this next chapter is much less of a rough ride for you.
Also wanted to suggest you

by Tbrand (May 2)

Hi Martin, I have been on 600mg Gleevec for going on to 3 years now and feel great. No difference then before CML. I never read about the side effects, it’s all, “can” have. So don’t dwell on it. In
Category: Treating CML

Replies: 4

Last updated: 8 May 2018
Romo on 10 April 2018

Category: Uncategorised

Replies: 11

Last updated: 8 May 2018

I heard that people with CML have a sense of humor..
by Romo (May 8)

Guy walks into a bar and ask the Bar Tender,
“ Give me a beer before the trouble starts”.
The bar tender gives the beer.
The guy says,
“Give me another beer before the trouble starts”

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 crocodile
by paying attention to whether the animal sees
you later or in a while...
internet.

by Romo (Apr 15)

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

Romo
Category: Uncategorised

Replies: 11

Last updated: 8 May 2018
Francisco Estévez on 29 April 2018

Category: Side effects

Replies: 21

Last updated: 7 May 2018

Starting Treatment Monday! What can I expect?
by Philiptibbs (May 7)

I'm not happy that you have the same side effects as me but it makes me feel like I'm not alone and not crazy. I may try Sprycel if I can't get the side effects from Tasigna to subside just a little

by tiredblood (May 6)

Actually, my experience with Tasigna and Gleevec have been very similar to Philip’ as listed in his original post. I appreciate Philip’s input as it resonates with my own experience. It has been my

by Philiptibbs (May 3)

Thank you so much for the info. I highly appreciate it and will start taking the magnesium and D3 and the Curcumin . I would love for half the pain to go away so I can get off these terrible pain

by Philiptibbs (May 3)

I wish I lived by you so I could come talk with you. My wife said I need to talk with people who have Leukemia and that it would help me and it does. You are such a very nice woman and thank you for
Category: Side effects

Replies: 21

Last updated: 7 May 2018
Chuckster on 25 April 2018

Category: Side effects

Replies: 4

Last updated: 7 May 2018

Anyone experience weight loss on Sprycel?
by Liamsdad (May 7)

I'm glad I saw this post. Since switching to Sprycel - only 40mg, I have lost about 10 pounds as well, going from 145 to 135 lbs and I'm 5'10" (sorry British folk-don't know the conversions),

by Gitel (Apr 26)

Hi Chuck. On 100 mg Sprycel just this past 4 weeks after 3 months on Imatinib. Am resistant to Imatinib, thus the change. Pray Sprycel works. My original diagnosis was Dec 1,2017. No,

by Chuckster (Apr 25)

Thanks Louise!
Hope you husband is feeling better also!

Chuck.

by LouiseS (Apr 25)

Hi Chuck
My husband def also lost some weight initially. Less of an appetite plus anything fatty, like pizza made him nauseous. A few months in his appetite was back to normal but he still feels
Category: Side effects

Replies: 4

Last updated: 7 May 2018
Nuttyma25 on 1 May 2018

Category: Treating CML

Replies: 1

Last updated: 5 May 2018

Pancytopenia and Nilotinib
by sandy craine (May 5)

Please try not to worry too much about whether this is signs of worsening CML or some other cancer etc. It is more than likely to be due to drug toxicity. Your PCR was pretty much in the

by Nuttyma25 (May 1)

I am a 51 year old female diagnosed with CML in the Chronic phase in January of 2017. I feel certain it was a result of radioactive iodine treatments that I had for thyroid cancer six years ago.
I
Category: Treating CML

Replies: 1

Last updated: 5 May 2018
kylelawkc on 3 May 2018

Category: Side effects

Replies: 1

Last updated: 3 May 2018

Nilotinib—Hair Loss
by cmljax (May 3)

When I was on Tasigna 600 mg/day, my hair stopped growing for about 3 months. As I began to reduce dose ffirst to 450 then to 300 then to 150, my hair started growing again. So when you

by kylelawkc (May 3)

I’m on 600mg per day since January this year and have lost circa 80% of my hair.
Will it ever grow back even I continue taking Nilotinib?
Thanks
Category: Side effects

Replies: 1

Last updated: 3 May 2018
Iyadede on 30 April 2018

Category: Getting help

Replies: 8

Last updated: 3 May 2018

Help with Nilotinib
by sandy craine (May 3)

I am really glad that Max Foundation can help you get access and support your case. They do good work in areas where there is limited access to TKIs. I hope nilotinib is the answer for you.

by Iyadede (May 1)

Dear Sandy,
Thanks alot!.
I am now in touch with the Max foundation and they are incredibly helpful. There is a hope they can ship the drugs to Rwanda for me. I am very grateful.
Cheers,

by cmljax (May 1)

I would get each doctor to fully explain the reasons for their recommendations. There may be something from one or both of them that you do not know yet.
As a layperson with this disease, I have

by Iyadede (May 1)

Hi there,
Thanks alot for your response,
I am in Chronic Phase. I have done the bone marrow biopsy and the doctor didn't mention any abnormal mutations.
I have realised that people have different
Category: Getting help

Replies: 8

Last updated: 3 May 2018
LouiseS on 2 May 2018

Category: Uncategorised

Replies: 2

Last updated: 3 May 2018

Disappointing blood test results
by LouiseS (May 3)

Thank you for the reply. I was most worried about the WBC and RBC morphology no longer being listed as normal but showing signs of ovalcytes etc as it hasn’t shown this for last several tests

by cmljax (May 2)

Louise:
I'd wait for the PCR before assuming it will be worse based on the CBC results. While the CBC results you mention are different, they are not really all that worrisome. My wbc has

by LouiseS (May 2)

Hi there, appreciate your feedback and support. My husband just got his blood results back one month after reducing his dose of dasatinib from 100 to 50. Looks like the its had an immediate negative
Category: Uncategorised

Replies: 2

Last updated: 3 May 2018
dagreen1971 on 24 April 2018

Category: Side effects

Replies: 4

Last updated: 2 May 2018

Tasigna side affect
by Philiptibbs (May 2)

Expect to have gas all day and night. I drink enough water to drown a Horse and it does nothing but make me pee all day and all night. I tell my Wife there are barking Spiders in the house and

by cmljax (Apr 24)

Hi Dave: I am also on Tasigna - started om 600 mg/day and now down to 150 mg/day. I used to have your problem primarily after I ate and here's a list of the things I tried and that seemed to

by David Fitz (Apr 24)

The NHS has some good guidance on this topic here:
https://www.nhs.uk/conditions/flatulence/
Some of the suggestions it makes are to try drinking peppermint tea. Activated charcoal tablets

by AlastairC (Apr 24)

Dave, the flatulence issue is well known to the many members of this forum. There is an old set of posts on this subject here which has some comments on what people use, and some humour which
Category: Side effects

Replies: 4

Last updated: 2 May 2018
Dona_B on 1 May 2018

Category: Uncategorised

Replies: 1

Last updated: 1 May 2018

Thyroid and/or Adrenal Fatigue
by sandy craine (May 1)

HI Dona,
low thyroid issues can be a problem... even without TKI therapy added to the mix. You might want to get your T3 levels tested which may be a better indication of hypothyroidism. I think

by Dona_B (May 1)

Hello,

First off, thank you for saving all 200 some pages from the old American forum that closed. I was on page 60 something looking for thyroid/adrenal fatigue articles. Found a few thyroid
Category: Uncategorised

Replies: 1

Last updated: 1 May 2018
Karinne on 26 April 2018

Category: Uncategorised

Replies: 2

Last updated: 1 May 2018

Peppermint tea against bloating
by sandy craine (May 1)

Hi Karinne,
Herbal preparations plus some fruits are not advised..... the main ones being St.John's Wort and Grapefruit juice or fruit etc. However herbal teas like peppermint, camomile etc are not

by David Fitz (Apr 27)

Hi Karinne,
I know if you read deep enough, you'll find something that says herbals teas should be taken with caution. I understand why ... maybe one is full of grapefruit, another of

by Karinne (Apr 26)

Somebody suggested to use peppermint tea to help with digestion issue and bloating with Sprycel. Does anybody know if it is okay to drink a cup every day? I am always afraid of interaction with
Category: Uncategorised

Replies: 2

Last updated: 1 May 2018
Tammy Tóth on 26 April 2018

Category: Getting help

Replies: 1

Last updated: 27 April 2018

Coming to understand and deal with CML Treament
by Justine (Apr 27)

Sorry to hear about your pneumonia and pain. I don't have much to offer except empathy and a few suggestions I've heard of but don't know much about. Others here will have more informed replies. My

by Tammy Tóth (Apr 26)

Not sure where to begin. I was diagnosed with CML in May 2017. After being on Humira for lengthy time for ankylosing spondylitis. I was started on Sprycel which my CML responded to, but after 8
Category: Getting help

Replies: 1

Last updated: 27 April 2018
karan on 25 April 2018

Category: Treating CML

Replies: 6

Last updated: 27 April 2018

Understanding results of BCR-ABL Quant
by David Fitz (Apr 27)

Karan,
To learn more about PCR tests and how they're done, results calculated and what they mean you should start with our very own PCR primer for patients.
You can find it at this page

by karan (Apr 27)

Thank you all for inputs and sharing the information.
Your responses gave us ( me & my family) a huge relief and assurance that things are under control.
@cmljax & @AlastairC
1. We always

by scuba (Apr 25)

Hi Karen,
.... from cmljax, "Scuba will tell you that your mother will never die from CML and that is most likely correct."
Your mother will NEVER die from CML and that is correct.
Her so-called new

by David Fitz (Apr 25)

I totally agree with you, Alastair. The likelihood is that it's a more sensitive test.
In any case, undetectable results always weird me out. I know I wouldn't trust the sensitivity of it and would
Category: Treating CML

Replies: 6

Last updated: 27 April 2018
Oneuniqueperson on 24 April 2018

Category: Uncategorised

Replies: 4

Last updated: 25 April 2018

Pregnancy with CML
by Oneuniqueperson (Apr 25)

Ok Great Advice. Thank you!

by David Fitz (Apr 25)

2012 is a fair while ago, so presuming you are doing very well now there's every reason to be hopeful that you could successfully have the baby. Consistency of taking your medication is really

by Oneuniqueperson (Apr 25)

Hi David I was diagnosed in 2012 in the US. I didn't consistently take Gleevec(400) in the beginning but now I do. And I'm not sure about my levels. But my hemotologist said that I was doing really

by David Fitz (Apr 24)

Hi there,
It's certainly a complicated situation, and many things depend on the individual. It would really help if you could go into a bit more detail on a few things:

When were you
Category: Uncategorised

Replies: 4

Last updated: 25 April 2018
vonnie on 18 April 2018

Category: Treating CML

Replies: 3

Last updated: 24 April 2018

nausea and diarrhoea
by r06ue1 (Apr 24)

Be sure to not take it on an empty stomach. Also, I like to wait at least one hour after eating before I take mine and I also like to take mine before bed, sleep through most of the side

by vonnie (Apr 24)

Hi David thanks very much for your reassuring reply all well now so guess it must have been a food problem thanks again
Yvonne

by David Fitz (Apr 23)

Hi Yvonne,
Nausea is common enough with imatinib, but usually people get it every day rather than sporadically. So this to me doesn't sound like a side-effect problem. Usually the way people deal

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: 3

Last updated: 24 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

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

by kylelawkc (Apr 21)

Hi All
I’ve been on Nilotinib 600mg per day since January this year
I’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
Justine on 14 April 2018

Category: Organising your life

Replies: 16

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: 16

Last updated: 19 April 2018
janlyn28 on 17 April 2018

Category: Uncategorised

Replies: 9

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: 9

Last updated: 19 April 2018
Sunshine15 on 3 June 2014

Category: Uncategorised

Replies: 7

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
Category: Uncategorised

Replies: 7

Last updated: 18 April 2018