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pianogrl44 on 8 May 2018

Category: Uncategorised

Replies: 6

Last updated: 10 May 2018

Imatinib still best option?
by David Fitz (May 10)

Philip,
Perhaps it might be worth discussing dasatinib or bosutinib with your doctor? The side effect profiles are very different (dasatinib for me is much better than imatinib - but for some

by pianogrl44 (May 10)

Thanks so much for these comments, they’re really helpful! I had wondered about the plateau as well and whether I might have hit one. Sounds like I need to be patient and continue to be

by Philiptibbs (May 9)

I was on Gleevec and had a hard time with the bone pain so I switched to Tasigna and let me say I should have stayed on Gleevec because the side effects with Tasigna are way worse for at least me

by kat73 (May 8)

Piano Girl (me too!) - I would like to add to the other comments that it is very common to hit a plateau with these meds, and you're right about at the point where that often happens. We get
Category: Uncategorised

Replies: 6

Last updated: 10 May 2018
hannah2010 on 5 May 2018

Category: Uncategorised

Replies: 2

Last updated: 9 May 2018

Results
by hannibellemo (May 9)

Hi, Hannah, I know how you feel. I have my PCR done at the Mayo Clinic and they just lowered their sensitivity to .003 for BCR/ABL. My most recent report came back at <.003 and it was still

by David Fitz (May 5)

Hi Hannah,
I wouldn’t be distraught at all. 0.003% is MR4.5 - a really deep response.
There are several reasons why you may have got this result. It could even be as simple as an upgrade to

by hannah2010 (May 5)

Hi
thanks in advance for any replays. I am a 33 year old female who was diagnosed 8 years ago was on imatinib until 2015 then switched to nilotinib in 2015 since then I have been undetectable.
Category: Uncategorised

Replies: 2

Last updated: 9 May 2018
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
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
Fillette 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 Fillette (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 Fillette (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
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
Philiptibbs on 11 April 2018

Category: Drug-drug interactions

Replies: 23

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: 23

Last updated: 17 April 2018