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Adeola on 11 May 2018

Category: Treating CML

Replies: 4

Last updated: 12 May 2018

Tinnitus and joint pains
by Adeola (May 12)

Oh wow so sorry about that teddy, I guess everyone’s body is different because I had tinnitus before starting glivec

by teddyb (May 12)

Hey.
I got tinnitus after starting Glivec.
At first it was really bad, but after a few months it got better, not sure if the tinnitus itself got better or that i just got used to it, but its no big

by Adeola (May 11)

Thank you so much David, yes I have friends and family who have been very supportive. I don’t know what I would have done without them

by David Fitz (May 11)

Hi there. That sounds pretty tough - a new CML diagnosis is hard to take. 23 is young - I was in my early thirties when diagnosed, so a bit older than you but not by that much. It's not something
Category: Treating CML

Replies: 4

Last updated: 12 May 2018
Belladoo on 2 May 2018

Category: Treating CML

Replies: 7

Last updated: 10 May 2018

Hello! Help!
by LouiseS (May 10)

Thank you for taking the time to reply. Glad the news was better. I have never come across someone with such a high abr % at diagnosis. Neither wonder his red blood counts were / are so low and it’s

by Belladoo (May 10)

Hi Louise,
thank you for thinking of us.
Thankfully Tuesdays appointment was a bit more positive although I’m still worried. I got the doc to go through how stuffs been going and asked

by LouiseS (May 10)

Hi Belladoo
wondered how your husband's doctor's appointment went Tuesday ?
best, louise

by Belladoo (May 3)

Hi,
hubby is on standard dose only for a few days to push down numbers then they will decide what to do. That’s why he’s being retested tomorrow and Tuesday. Our usual Doctor had been away but
Category: Treating CML

Replies: 7

Last updated: 10 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
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
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
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
Josie on 8 April 2018

Category: Treating CML

Replies: 2

Last updated: 10 April 2018

CML support in Phils
by sandy craine (Apr 10)

Hi Josie,
http://www.touchedbymax.weebly.com
Contact - Rod N. Padua, President of Touched By Max, Inc.

Sandy

by EvaH (Apr 8)

https://www.themaxfoundation.org/
Its the Max Foundation - hematologists in your country should know about them

by Josie (Apr 8)

Hi there. Josie here from the Philippines. anybody knows organization i can go to seek help in getting gleevec sponsorship?

thanks!
Category: Treating CML

Replies: 2

Last updated: 10 April 2018
MartinZA on 26 March 2018

Category: Treating CML

Replies: 4

Last updated: 28 March 2018

Imatinib or not?
by MartinZA (Mar 28)

Hey Lucas!
Great to hear from you, my friend. Thank you for your encouraging comment - I would also love to wait until next year before making the change, but unfortunately my doctor

by Lucas (Mar 27)

Hey, martin! I wouldn't worry about the pcr result - is within the margin of error and still MMR, so you had a confirmed MMR! About the change to glivec, if i were you, i would wait some more time.

by MartinZA (Mar 27)

Hi David
Thank you, as always, for responding so quickly and for helping to put my mind at rest regarding the efficacy of imatinib. You have no idea how much it helps me to read your messages

by David Fitz (Mar 26)

Hi Martin,
The differences in those results are well within statistical margins of error. I know you're seeing the rise and a 60% figure and worry, but I always think it's worth looking at
Category: Treating CML

Replies: 4

Last updated: 28 March 2018
PTeixeira on 22 March 2018

Category: Treating CML

Replies: 5

Last updated: 23 March 2018

My story
by cmljax (Mar 23)

If your PCR is stable at MMR or better, dose reduction should definitely be on the table with your doc.

by scuba (Mar 22)

PT - You might be having a deep deficiency in Magnesium given the leg pain. Full dose Sprycel can easily cause deficiency to occur.
Consider taking 400 mg (split morning and just before sleep) of

by PTeixeira (Mar 22)

Hello... I’m on 100mg. It’s just ALOT OF LEG PAIN. makes it hard to walk and do thing... I actually tried stopping my Chemo for some relief but my cancer came back a month later so I absolutely had

by kat73 (Mar 22)

What are your side effects?
Category: Treating CML

Replies: 5

Last updated: 23 March 2018
JacqJohn on 19 March 2018

Category: Treating CML

Replies: 4

Last updated: 21 March 2018

Edema with Imatinib
by Romo (Mar 20)

TKI’s shrink capillaries. Drinking more water will not mitigate this.
In some organs like eyeball and kidneys it’s the capillaries that are the life
and the hydration. Kidneys are full of

by kat73 (Mar 20)

I know there are many who swear by slugging down liters and liters of water every day, but I'm not one of them. I've had too many docs wave their hands at me and say the whole 64 oz per day

by JacqJohn (Mar 20)

Hi Kat,
Thanks for the reply. Yes I have those signature droopy eyelids. For legs is not everytime I see it.
i will try to reduce salt intake. Just wonder if drinking much more water (at least 2

by kat73 (Mar 19)

Unfortunately, this is a signature side effect for Gleevec. There is even a term, "Gleevec Eyes." I have never found anything to help, although it can be made worse by a high salt intake
Category: Treating CML

Replies: 4

Last updated: 21 March 2018
scuba on 20 March 2018

Category: Treating CML

Replies: 0

Last updated: 20 March 2018

Decisions in the Clinic: Treating Patients With Chronic Myeloid Leumeia
by scuba (Mar 20)

Decisions in the Clinic: Treating Patients With Chronic Myeloid Leumeia
https://www.cancertherapyadvisor.com/michael-deininger-md-phd/section/8095/
This is a nice summary of practical
Category: Treating CML

Replies: 0

Last updated: 20 March 2018
Liamsdad on 6 March 2018

Category: Treating CML

Replies: 3

Last updated: 16 March 2018

New Drug that supposedly kills the stem cells
by Romo (Mar 16)

Here is another one.
https://www.cancertherapyadvisor.com/chronic-myeloid-leukemia/chronic-le...
I sure hope they cure CML before the End Times.
I don't want to die before I'm cured of cancer.
Romo

by Romo (Mar 9)

Seems to be gaining a little more traction.
https://www.youtube.com/watch?v=ZMdKQcq9s5E

Romo

by RC Kirk (Mar 6)

Hopefully it will work as well in us as it does in the mice! I wonder how long before they know if this will work and then how long until it's available to us?

by Liamsdad (Mar 6)

In the 2 years since I've been diagnosed I've seen a few of these types of articles but this looks promising!
https://www.businesswire.com/news/home/20180305005966/en/City-Hope-Study...
Category: Treating CML

Replies: 3

Last updated: 16 March 2018
Dinesh Reddy on 15 March 2018

Category: Treating CML

Replies: 7

Last updated: 15 March 2018

P230 (E19A2) CML
by David Fitz (Mar 15)

Just one word of warning ... pomegranate juice may interact with an enzyme (CYP3A4) that is important in breaking down nilotinib. Whilst a few pomegranate seeds in a salad isn't going to cause

by Dinesh Reddy (Mar 15)

Hello scuba ....
First of all lemme thank u for the reply, I was also doing some research on internet and found that Nilotinib is the medicine which got good response in P230 CML

by Dinesh Reddy (Mar 15)

Hello maaam ellie thanks for the reply ..... ya it’s kind of rear so was bit worried and thought to ask the expert openion over here .... & really thanks for the reply .... tomorrow is the

by scuba (Mar 15)

Hi Ellie,
From Dinesh's post:
"...a micro transcript BCR-ABL was detected in P230( E19A2)"
That is the key phrase. BCR-ABL WAS detected. They didn't know to look for it which is why it didn't show
Category: Treating CML

Replies: 7

Last updated: 15 March 2018
MartinZA on 6 March 2018

Category: Treating CML

Replies: 3

Last updated: 8 March 2018

Hope for those with slow responses
by Lucas (Mar 8)

Amazing, Martin!!! I'm really glad to read good news! I know that your journey wasn't easy (just like mine). If i were you, i would wait for the next pcr to change to imatinib, but i think you'll be

by JohnFromChicago (Mar 7)

Wow I almost have the exact same response rate. Actually yours is the most similar I have ever seen in 2 years of being on the CML Forums (here and LLS)! I agree that even turtles will do well

by kat73 (Mar 6)

Great post. My schedule could be a duplicate of yours. The difference is that in my early months I wasn't made aware of the Guidelines (US or European) and instead my onc just kept

by MartinZA (Mar 6)

Hi everyone
This is just a posting that I would like to make to provide some hope for people who have sub-optimal / slow responses to the TKIs and who miss the milestones. I am writing this
Category: Treating CML

Replies: 3

Last updated: 8 March 2018
Christine R on 28 February 2018

Category: Treating CML

Replies: 2

Last updated: 28 February 2018

Nilotinib plus proposed chemo for breast cancer
by Christine R (Feb 28)

Thank you.
i have sent a list of questions to the Hamersmith this morning as they are much more pro-active than the oncologist. Just trying to get my head around the whole thing at the moment

by sandy craine (Feb 28)

Hi Christine,
I am sorry to hear you have breast cancer as well as CML. I understand why you would be very concerned about stopping your TKI while undergoing further chemotherapy for the BC. I would

by Christine R (Feb 28)

Hi
i had breast cancer in 1998 and 2001 followed by CML diagnosed in 2003. Currently on Nilotinib and levels are all good. i have now been daignosed with more breast cancer which is HER2+ as well as
Category: Treating CML

Replies: 2

Last updated: 28 February 2018
ABHUK on 2 February 2018

Category: Treating CML

Replies: 9

Last updated: 6 February 2018

Decision about coming off Imatinib (Glivec)
by David Fitz (Feb 6)

Hot off the press this afternoon, it's 0.05% on the international scale.
David

by scuba (Feb 6)

David,
What is your current PCR level?

by David Fitz (Feb 6)

Very much still a spring chicken ... or hedgehog, by the looks of your profile picture!
I'm a couple of years younger than you, and am keen to reduce or eliminate my TKI consumption. I'm

by ABHUK (Feb 6)

Romo,
Thanks but actually I have just turned 40 years old, so I would still consider myself a spring chicken!!
I have lots to think about.
Category: Treating CML

Replies: 9

Last updated: 6 February 2018
starente on 24 October 2017

Category: Treating CML

Replies: 4

Last updated: 2 November 2017

New to this with questions
by starente (Nov 2)

Very helpful. Thanks again for your insight!

by David Fitz (Oct 31)

The pain onset pretty quickly, within a week of taking it I remember. It was pretty sudden. For me, it was focused on my legs and arms - particularly the upper half of my legs. It totally nailed me

by starente (Oct 27)

Thank you so much David! A few additional questions if you have time.

How long after starting imatinib did you start experiencing pain?
Was the onset of pain sudden?
Did the pain move

by David Fitz (Oct 27)

Hi there,
Some patients do find dasatinib / Sprycel is hard on their joints. Of course, as we all get older I suppose joint problems are more frequent! However, it this has onset suddenly and is
Category: Treating CML

Replies: 4

Last updated: 2 November 2017
JacqJohn on 27 October 2017

Category: Treating CML

Replies: 5

Last updated: 31 October 2017

New with CML
by David Fitz (Oct 31)

Hi again,
Losing weight prior to diagnosis is really common - I lost several kilos prior to being diagnosed. So as long as this stabilises post-diagnosis there is nothing to worry about.
Hydroxyurea

by alliswell (Oct 27)

hello JacqJohn
for the post Fri, 27/10/2017 - 7:07pm
questions about hydroxyurea , i think it will be better if david answers them. but you seem to be right.
i just wanted to write about fish

by JacqJohn (Oct 27)

Hello David,
thanks for the feedback. He was actually losing weight about 2-3months prior to CML diagnosis. Based on physical examination, he had no enlargement of the spleen/any sort of pain at the

by sue. R (Oct 27)

When I was first diagnosed I was put on hydroxeura as well. It reduced my white count, but also reduced my platelets, red blood and neutrophils to the point where I had to be hospitalized,
Category: Treating CML

Replies: 5

Last updated: 31 October 2017
alangent on 14 June 2017

Category: Treating CML

Replies: 7

Last updated: 28 September 2017

Alternatives to imatinib
by AlastairC (Sep 28)

Stewart, just wanted to pick up on your point on whether previous radiotherapy could be a cause of CML. I was Dx 11 years ago with CML, and 30 years ago had 3 weeks of radiotherapy after a diagnosis

by sandy craine (Sep 24)

Hi Stewart,
Yes all the posts on this forum can be viewed by others.
Re: diabetes and nilotinib. There are lots of studies that confirm the connection with nilotinib and diabetes type 2 -

by Stewart Bliss (Sep 22)

Hello Sandy,
I not sure if this post is going to be viewed by other CML patients/sufferers or not...
Briefly I was diagnosed November 2014, and have been on Nilotinib ever since, now a 'young' 73

by sandy craine (Jul 3)

Hi John,
Just a note on diabetes and TKIs.... I think the issue is with nolotinib and diabetes, not with bosutinib.
Sandy
Category: Treating CML

Replies: 7

Last updated: 28 September 2017