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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
asifinf on 13 April 2016

Category: Treating CML

Replies: 5

Last updated: 19 September 2017

Nilotinib to Dasatinib switch
by davewell (Sep 19)

For another perspective...
I am on dasatanib. I started out on 140mg, now I am on 100mg.
When starting dasatinib I had a headache that manifested itself for a couple of hours every day. Nothing too

by filawong (Sep 18)

Hi,
Good to find your post here, how are you recently? Can you share any update for us?
I am 34 years old male staying in Macau, my situation is very similar to you, having Nilotinib for

by David Fitz (Apr 16)

Hi again!
Sorry for the short-ish reply. I'm on my phone replying so typing not great.
Pleural effusion is zero issue for me. It does effect some people, but when it does happen it's

by asifinf (Apr 15)

Thank you very much or the prompt response David.
Yea, the mutation test has just been done; I am awaiting the result now.
One important thing I would like to know about Dasatinib is the side
Category: Treating CML

Replies: 5

Last updated: 19 September 2017
David Fitz on 5 September 2017

Category: Treating CML

Replies: 7

Last updated: 13 September 2017

Dropping to 70mg
by Karinne (Sep 11)

Congratulations on your decision!!!!
Let us know about your progress. How often are you going to do your pcr test?

by alliswell (Sep 8)

Congratulations . very good news indeed .
i hope you can keep your score at same level .
will be following , keep us updated ..
Good luck

by chrissie (Sep 8)

Wow. Great news, David. Hopefully, after 2 years om MR4 you will hold it. Keep us posted.
Best
Chrissie

by MartinZA (Sep 7)

That's wonderful news, David! Well done.
Category: Treating CML

Replies: 7

Last updated: 13 September 2017
John Gilbert on 23 July 2017

Category: Treating CML

Replies: 2

Last updated: 17 August 2017

PCR 24% but cant get lower
by EvaH (Aug 17)

As a quick positive note, optimal response has an impact on your ability to eventually come off TKIs but doesnt seem to effect long term remission.
However I agree a plateau at 24% might be worth

by sandy craine (Jul 29)

HI John,
Sorry for this late replay as I missed your post. I have a few questions:
1. Where are you being treated? Is it s regional CML expert centre or a District General Hospital?
2. Does your

by John Gilbert (Jul 23)

Ive been on Sprycel for 2 years. The first year I got down to 9% pcr levels and then my platelets started getting low. I did a bone marrow biopsy and I didn't have any mutations and no more blasts
Category: Treating CML

Replies: 2

Last updated: 17 August 2017
ian hinley on 6 October 2016

Category: Treating CML

Replies: 9

Last updated: 18 July 2017

Hopefully exciting times ahead - Sprycel dose reduction!
by ian hinley (Jul 18)

9 Month UPDATE: Have just had third 3 month test results since halving in September 2016 and still at 0.004 so MMR 4.5 still!! This still proves proves that half the dose (50mg Sprycel) is

by Philip (Jun 5)

HI Ian: I joined CML Support about a year and one month ago. I posted for the first time yesterday. As to your dosage reduction on Sprcyel, here is what I have to say.
I was

by David Fitz (Apr 13)

Ian,
That's great ... and assuming an IS calibrated result 0.003% is plenty more than MMR (MR3), it's MR4.5 - an excellent result! Congratulations.
David.

by ian hinley (Apr 13)

6 Month UPDATE: Have just had second 3 month test results since halving in September 2016 and still at 0.003 so MMR. Really chuffed as this proves that half the dose is keeping everything in
Category: Treating CML

Replies: 9

Last updated: 18 July 2017
Harsh on 5 March 2017

Category: Treating CML

Replies: 3

Last updated: 11 June 2017

Bcr abl and bone marrow transplant
by Harsh (Jun 11)

.

by Harsh (Mar 6)

Thank you for your detailed response and advice !!.I will enquire about Ponatinib and ABL001 clinical trials ,will wait for next pcr test results for SCT decision but will try to get HLA

by sandy craine (Mar 5)

Good news... you have responded well to nilotinib within the guidelines of less than 10% within 3 months. You next PCR result may well show a further drop so hopefully MMR (0.1%) before 6 months. As

by Harsh (Mar 5)

Hi sandy,

After your advice I spoke to my oncologist about BMT .He told to wait for for my 3rd month pcr test.If Iam in 2nd chronic phase we may go for BMT and if the blasts are less than 10%
Category: Treating CML

Replies: 3

Last updated: 11 June 2017
Karinne on 6 June 2017

Category: Treating CML

Replies: 3

Last updated: 8 June 2017

Stopping (or not) the medication?
by nigel (Jun 8)

Hi Karinne, Thanks for the post I would comment as follows.
Yes it seems 50% of patients will go back on treatment but of those so far 100% responded to treatment once more, that is many

by simy99 (Jun 8)

Hi
Diagnosed in 2003. 1st in Wales prescribed Glivec off trial
Nilotunib about 6 years ago down to 150g.
Went to HH nearly 3 years ago. Came off all drugs in Jan 2015.
Latest PCR (HH) is 0

by Philip (Jun 7)

I think that would be a great discussion

by Karinne (Jun 6)

Hello everyone,
I would like to open a discussion about stopping the TKIs outside of clinical trials.
I am amazed and worried at the number of entries about CML patients wanting to stop their
Category: Treating CML

Replies: 3

Last updated: 8 June 2017
EvaH on 5 June 2017

Category: Treating CML

Replies: 4

Last updated: 7 June 2017

Buying Imatanib in UK when you are outside NHS
by johnw1001 (Jun 7)

Hi Eva
I would suggest the following .Most private hospitals have a private GP service usually same day at a charge of about £75 minimum Why not discuss the validity of your Swiss

by David Fitz (Jun 6)

Be aware that there could be a VAT implication of importing medicine from Switzerland to the UK.
If you imported £5,000 worth of imatinib you could be liable for about £1000 of VAT

by EvaH (Jun 6)

Thanks, I'll check him out. I'm looking at a possibility to ship stuff out from switzerland but thought its better to have a back up plan and its great to have a name.
I've been

by David Fitz (Jun 5)

Eva,
Neither an A&E doctor or a GP would not be able to prescribe imatinib for you in any case. It can only be prescribed by someone with a specialism in the appropriate area - i.e. a
Category: Treating CML

Replies: 4

Last updated: 7 June 2017