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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
Meg on 11 April 2018

Category: Uncategorised

Replies: 3

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 & imatanib for a year before. Im not sure of counts at moment

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

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
Category: Uncategorised

Replies: 3

Last updated: 15 April 2018
Chuckster on 14 April 2018

Category: Side effects

Replies: 10

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 all
Also, no cough at all.
I am scheduled for another chest x-ray in approx 2 weeks to see if the pneumonia

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: 10

Last updated: 15 April 2018
Nj on 11 April 2018

Category: Uncategorised

Replies: 8

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

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 community
can’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

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
Category: Uncategorised

Replies: 8

Last updated: 12 April 2018
Justine on 7 April 2018

Category: Blood tests

Replies: 7

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.
Category: Blood tests

Replies: 7

Last updated: 12 April 2018
Josie on 10 April 2018

Category: Treating CML

Replies: 4

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: 4

Last updated: 11 April 2018
KevinA on 5 April 2018

Category: Treating CML

Replies: 6

Last updated: 11 April 2018

Bcr Abl rising on 2nd TKI, am I headed for BMT
by KevinA (Apr 11)

Forgot to answer two questions:
1) I haven't tried major dietary changes (ie anti inflammatory), though I eat very well and follow many of the latest health trends (green smoothies, kale salads,

by KevinA (Apr 11)

Hi Scuba, Louise, Kirk:
Thanks for the replies and support, I enjoyed hearing about Scuba's journey and everyone's suggestions. I am seeing a CML specialist at Beth Israel in Boston.
The

by RC Kirk (Apr 7)

Welcome Kevin, Although I think you've been here longer than I have. Your #2 question got me thinking. I went back and checked my pathology reports from five years ago when I had

by LouiseS (Apr 6)

Hi Kevin

Congratulations on your wedding. I am glad you were well enough to enjoy it and your honeymoon. I am so sorry , however, that it has been such a tough year for you coping with the
Category: Treating CML

Replies: 6

Last updated: 11 April 2018
cmljax on 13 March 2018

Category: Blood tests

Replies: 22

Last updated: 31 December 2019

My first blip up
by scuba (Apr 10)

... or he can achieve what I did and take only 20 mg Sprycel!

by LouiseS (Apr 10)

Oops I missed that. Thank you. Now I have to tell my husband to take 16 tablets daily! Luckily they nearly finished.
I did place an order yesterday with Physician Naturals. Double checked and

by scuba (Apr 10)

Hi Louise,
Regarding Curcumin supply - keep in mind number of caplets per container and how many caplets make up one serving in order to get the correct mg dose. These labels can be tricky and

by LouiseS (Apr 10)

Hi there I am glad you feel free to share your concerns here and get comfort. I feel exactly the same way and can only imagine how much harder it was for patients in the past who didn't have access
Category: Blood tests

Replies: 22

Last updated: 31 December 2019