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Tanya Cuffe on 30 January 2019

Category: Uncategorised

Replies: 8

Last updated: 31 January 2019

What does log increase mean?
by scuba (Jan 31)

100 is very strong. Have a blood test in one week (CBC) to check that your blood counts are not dropping too fast - especially neutrophils.
Myelosuppression is a side effect of sprycel that usually

by Tanya Cuffe (Jan 31)

Saw haemo ...wanted me start on 100 mg sprycel but told her bout the 70mg and then the drop to 40...she had not heard of that!Hope it does as its meant to and will let you know!

by Tanya Cuffe (Jan 30)

Thank you for all of that am a bit clearer bout it all.Will discuss with doc today and hope it will all go well .

by Tanya Cuffe (Jan 30)

I had my last test 3 months ago...will see what doc says today and thanks for advice!
Category: Uncategorised

Replies: 8

Last updated: 31 January 2019
kali on 24 January 2019

Category: Uncategorised

Replies: 8

Last updated: 31 January 2019

Blood test results
by kali (Jan 31)

Hi Kat! Good to reconnect with you!
Thanks for responding with how you explained your experience. That is the sort of thing I am wondering about.
There has been some discussion to switch to the

by kat73 (Jan 31)

Kali - I can only comment on your first question. I still have a small remaining pleural effusion on 20 mg Sprycel. The pulmonologist said he was pretty sure that it would never go away

by kali (Jan 30)

Do people still have pleural effusions on Sprycel 20 mgm or is it fairly rare?
If we start TFR and numbers start coming back, does starting over mean we have to wait several years again with

by scuba (Jan 25)

Kali,
Ideally you should be testing once a month while off drug. The most critical time is the next six months off drug where the probability of losing TFR is greatest. Dr. Cortes mentioned he
Category: Uncategorised

Replies: 8

Last updated: 31 January 2019
Ros77q on 30 January 2019

Category: Uncategorised

Replies: 4

Last updated: 30 January 2019

Blast phase and allo-sct
by Job Guerra (Jan 30)

I have been following the blog below which is very informative regarding some of the experiences post transplant. Naturally everybody's experience is different and I only point it out

by Lucas (Jan 30)

Hi, Ros. your doc is right, just a very few have long term responses to tki after going throught blast phase. Good luck on your BMT! Hope all goes well!

by Ros77q (Jan 30)

Thanks julia. I askesd the same. But doc suggest me to go for transplant for long term survival. And only staying on tki wouldnt be effective as the disease would come back shortly. I am 31 and have

by Julia.K (Jan 30)

If I were you, I would definitely try to continue TKIs, bone morrow transplant is very serious and risky procedure, if you are young and have no other diseases you may recover quickly, but still,
Category: Uncategorised

Replies: 4

Last updated: 30 January 2019
flanders2 on 11 January 2016

Category: Treating CML

Replies: 8

Last updated: 30 January 2019

Blast Crisis CML
by Ros77q (Jan 30)

Hi there i was diagnoses in chronic phase and later develop to bp. I achieve second cp with dasatinib and in cytogenetic remission now. I am about to have my bmt very soon. Hope it goes well and

by darley (Jan 17)

^ Couldn't agree more with some of the sentiments expressed in your post Sandy.

Particularly "Survival often depends on getting the right information and that is not always as

by sandy craine (Jan 15)

Hi Courtney,
My knowledge of US geography is not that good...but MD Anderson Cancer Centre in Houston is one of the premier centres- including for CML and the Acute Leukaemias - it is also a premier

by Lucas (Jan 13)

Courtney, first of all, i'm sorry about your dad and i wish very good luck for him. Second: there's a great forum in the US with good people that are able to help you. here's the link:
Category: Treating CML

Replies: 8

Last updated: 30 January 2019
Frenchguy on 15 May 2014

Category: Uncategorised

Replies: 31

Last updated: 30 January 2019

Need Help
by Ontasigna (Jan 30)

Thanks David and Job. Appreciate your response.
Its been a month I started off with Nilotnib - 800 mg. Praying for the optimal response.
How long does rbc/wbc/ Platelets to come down to normal

by David Fitz (Jan 29)

Hi,
I was on imatinib at the time. 400mg.
I didn't have a test at exactly 3 months, but I was at 76% at 2.5 months and 41% at almost 4 months.
I then started dasatinib and while I

by Job Guerra (Jan 29)

Hello. I know your question was for David but In my experience I would not switch to anything after 3 months unless your PCR is not moving at all in which case I would quickly switch.
I

by Ontasigna (Jan 29)

Hi David
When you didn't hit 3 month response of < 10%. Which tki were you on and which one you switched to.
What % of bcr abl were you at 3 months?
Category: Uncategorised

Replies: 31

Last updated: 30 January 2019
Dustylloyd on 23 January 2019

Category: Blood tests

Replies: 11

Last updated: 30 January 2019

Nilotinib dosage
by Dustylloyd (Jan 30)

Hi Lucas, thanks for the reply, you started exactly 1year before me on 800mg Nilotinib and like you Imatinib didn’t have the effect my doctor was looking for and hence I have been on Nilotinib

by Lucas (Jan 29)

Hey, dusty! 800mg is/was the dose for those who were intolerant/resistant to imatinib, as i was! i started 800mg nilotinib in september/2014 and still on it, despite been under MMR4 most of that

by Dustylloyd (Jan 29)

Thanks cmljax and every one at Cml Support group, you’re replies to any questions are so helpful, it’s very reassuring that as a member of the Cml “club “ support is here,

by cmljax (Jan 29)

You don't have to reach MR4.5 to begin dose reduction. You might feel better about dose reduction if you are at MR4.5, but many of the trials required only MMR (MR3.0). Dcotors are
Category: Blood tests

Replies: 11

Last updated: 30 January 2019
Ros77q on 26 January 2019

Category: Treating CML

Replies: 3

Last updated: 29 January 2019

Cml blast phase
by Job Guerra (Jan 29)

It depends on how long you were taking Gleevec. If you only recently (3 months or less) started taking Dasatinib then 25% is probably not the worst result. However, If you have

by Ros77q (Jan 27)

Hi scuba thanks for reply.
my doc said i m in remission. May be i am back to chronic phase. Bone marrow report says no marrow fibrosis no atypical cell.

by scuba (Jan 26)

Need more information ...
You were diagnosed in June 2018 and imatinib failed you. You started dasatinib and was successful in returning to chronic phase (blasts ~ 1%) which is good. Your latest

by Ros77q (Jan 26)

Hi there i was diagnosed in june 2018 and started imatinib. But it did not respond well and cml reached to blast phase. I started dasatinib along with chemo therapy and came back to chronic. My
Category: Treating CML

Replies: 3

Last updated: 29 January 2019
DawnD on 27 January 2019

Category: Uncategorised

Replies: 2

Last updated: 28 January 2019

Paying for sprycel
by DawnD (Jan 28)

Thank you Alison. Just joined onto that site. So appreciate your info. Dawn

by alison (Jan 28)

I am not an expert as we just started Medicare. But I know is better to start using Part D the beginning of year so you go thru all the deductible and donut hole for the year. There is

by DawnD (Jan 27)

To : Medicare people in the States. I will be going on Medicare soon and have found out that there is no assist any more from Bristol Myers. Anybody know any other assist programs? Thanks for
Category: Uncategorised

Replies: 2

Last updated: 28 January 2019
Ontasigna on 28 January 2019

Category: Treating CML

Replies: 0

Last updated: 28 January 2019

Tasigna: Optimal response @ 3 months
by Ontasigna (Jan 28)

Hi all,
Is there anybody who have not achieved optimal response < 10% and still continuing tasigna?
I could see most of them achieve it.
--Ontasigna
Category: Treating CML

Replies: 0

Last updated: 28 January 2019
bendicco on 27 January 2019

Category: Treating CML

Replies: 4

Last updated: 28 January 2019

Gleevec and antidepressants
by Gitel (Jan 28)

You are correct David, thanks. Gitel

by David Fitz (Jan 27)

QT Interval, perhaps?
https://en.m.wikipedia.org/wiki/QT_interval

by bendicco (Jan 27)

Thanks for your response. Yes my oncologist and the pharmacist both at Sloan know I’m on it. The Gleevec does enhance the efficacy of the Cymbalta but I have not had any issues!

by Gitel (Jan 27)

Did the physician who prescribed the anti depressant know you were on Gleevec? I used to be on Gleevec, was switched to Sprycel because of resistance. In each case, pharmacologist told
Category: Treating CML

Replies: 4

Last updated: 28 January 2019
ian hinley on 27 January 2019

Category: Treating CML

Replies: 1

Last updated: 27 January 2019

Vitamin D in cancer interview
by scuba (Jan 27)

Link to summary of the VITAL study concluding little impact of vitamin D on Cancer:
https://www.vitalstudy.org/findings.html
The study is flawed. The test subjects were given too little vitamin D

by ian hinley (Jan 27)

http://www.cancernetwork.com/article/does-vitamin-d-have-role-cancer-pre...
Category: Treating CML

Replies: 1

Last updated: 27 January 2019
Nimbus2 on 3 December 2018

Category: Uncategorised

Replies: 2

Last updated: 27 January 2019

A summer to authumn disease
by Dustylloyd (Jan 27)

Even newer to me I was diagnosed in January, and I remember only ever wondering was it my life style that had caused it, by the way when I mean life style it wasn’t a rock and roll life style

by AlastairC (Dec 3)

New one on me. I was dx in April. Difficult to see how this can be as people are diagnosed at different stages of progression, from WBC in hundreds (me) to those in the hundreds of thousands.

by Nimbus2 (Dec 3)

Two haematologists have separately told me that CML is a summer to autumn disease. In the northern hemisphere, this means that there is a tendency for "new recruits" to appear during
Category: Uncategorised

Replies: 2

Last updated: 27 January 2019
Akram Farooqi on 22 January 2019

Category: Getting help

Replies: 3

Last updated: 27 January 2019

Can't Afford Tasigna in India. What to Do?
by Sid35 (Jan 27)

Hi Akram, Glad to hear that your mother is receiving Tasigna now. God bless her.

by Akram Farooqi (Jan 25)

Hello Sid35 thanks for your help... yeah i already tried to contact Max Foundation and send mails too, in reply they sent me contact details of Novartis patient support program, I tried to contact

by Sid35 (Jan 22)

Hi Akram,
I know how difficult it is to afford Tasigna in India.
Have you checked with Max foundation? I heard they provide access to Inatinib, Bosulif etc. Not sure about Tasigna.
You can fill up

by Akram Farooqi (Jan 22)

hello there, i hope you guys are doing well, i am from india, my mother recently diagnose with cml (AP), however our financial condition is very weak we Somehow manage to go through bonemarrow
Category: Getting help

Replies: 3

Last updated: 27 January 2019
Vikram on 23 January 2019

Category: Uncategorised

Replies: 8

Last updated: 26 January 2019

Grape seed extract good for cml
by Vikram (Jan 26)

I try many food......
GILOY ( Tinospora cordifolia) ( anti - cancer)
Wheat grass juice ( anti - cancer)
(2015 - 2017)
Result Little help...... Against cml
Not cure..........
Continue 2019

by Vikram (Jan 26)

Rc kirk,
Same
But different sites......

by Nimbus2 (Jan 26)

These "vitamin" articles (like the British Daily Mail) usually cite unfounded claim such as "75% of patients are cured". There is an aspirin one in the Daily Mail today.
Here in

by RC Kirk (Jan 25)

Hi Vikram,
Is this the article you were talking about? https://www.science20.com/news_releases/grape_seed_extract_found_kill_le...
I found the link to it here: http://cmlc.ml/community.
Category: Uncategorised

Replies: 8

Last updated: 26 January 2019
Ros77q on 24 January 2019

Category: Uncategorised

Replies: 4

Last updated: 26 January 2019

Bcr/abl ratio is 25%
by Ros77q (Jan 26)

Thanks for reply

by Ros77q (Jan 26)

Thanks

by scuba (Jan 24)

Assuming a month ago you started first line dasatinib treatment - having a bcr-abl test result of 25% is good progress. What was your FISH result? FISH measures actual CML cells under the microscope

by AlastairC (Jan 24)

Ros, did you have BCRABL test at diagnosis? If so please tell us that answer. The guidelines state that optimal response is below 10% 3 months after diagnosis, although there are many people
Category: Uncategorised

Replies: 4

Last updated: 26 January 2019
Anonymous (not verified) on 4 January 2019

Category: Blood tests

Replies: 11

Last updated: 25 January 2019

Meaning of the test?
by alliswell (Jan 25)

Possibly his test is just a PCR( RT-PCR ) test, not a quantitative one.
If this is the case, still negative is good news.
My mother's history
@Dx qRT-PCR : %54,61

by Phuong Phuong (Jan 23)

Hi David,
I got it, My boyfriend is continuing to take 400mg Imatinib per day. Thank you for your informative advices. I am really appreciated. As my boyfriend will have the long jouney

by Phuong Phuong (Jan 23)

Thank you so much Kirt. We have already had the copy of the BCR ABL report. We will continue to save and track the number now and then.

by David Fitz (Jan 22)

That is an unusually quick response, but of course not impossible. It sounds like he is definitely doing well.
But before you run a victory lap, there are a couple of things to remember.
Category: Blood tests

Replies: 11

Last updated: 25 January 2019
Stas on 23 January 2019

Category: About CML

Replies: 1

Last updated: 24 January 2019

I need help ASAP
by AlastairC (Jan 24)

I hope this link may help.

by Stas (Jan 23)

I’m an international person , but have lived in Cleveland area for a few years. My friend’s dad got diagnosed with GIST and he is in need of Glivec 400 mg. for treatment. It’s not
Category: About CML

Replies: 1

Last updated: 24 January 2019
piyush sharma on 23 January 2019

Category: Treating CML

Replies: 3

Last updated: 24 January 2019

Increase in bcr-abl1% from 0.02548 to 0.0431
by AlastairC (Jan 24)

The increase between the last two results is not significant, and well within the range of accuracy of the test technique. I agree that another test in 3 months to out your mind at rest would be a

by RC Kirk (Jan 23)

Yes, I agree with Justine. But, if it were me, I would ask for another PCR test in three months just to be sure.

by Justine (Jan 23)

Your results are great!
As someone with CML who did not achieve MMR until 21 mos. after diagnosis, I will say that your trend is wonderful.
My understanding is that small changes like this are

by piyush sharma (Jan 23)

Hi,
I am little worried as my bcr-abl1 IS% slightly increased in the recent test result . Please help me understanding if i need to consider change in therapy.
I am on Imatinib 400 mg since
Category: Treating CML

Replies: 3

Last updated: 24 January 2019
Justine on 23 January 2019

Category: Treating CML

Replies: 0

Last updated: 23 January 2019

Recent publication on TFR from US Leukemia & Lymphoma Society
by Justine (Jan 23)

Just ran across this very recent document.
http://www.lls.org/sites/default/files/National/USA/Pdf/Publications/FS3...
It is helpful to understand CML basics and where we stand with TFR
Category: Treating CML

Replies: 0

Last updated: 23 January 2019
bendicco on 14 January 2019

Category: Treating CML

Replies: 12

Last updated: 22 January 2019

CML USA meetup
by Jason1435 (Jan 22)

Well hopefully everything is under control now. This is all new to me and I'm learning as much as I can. Its great your cml is under control. Since I started back on my meds I've had no side effects

by Jason1435 (Jan 22)

Had my testicle removed. I had chemotherapy no radiation.

Chemo didn't work, so had the lipnodes removed that were infected with cancer. Was cancer free for over 10 years until this.

by RC Kirk (Jan 19)

Jason, have you considered going to a lower dose of Sprycel? It could possibly give better results, since you had low platelets.
I was DX after giving a blood donation to the Red Cross.

by AlastairC (Jan 18)

Hi Jason,

Interested to read that you have a CML diagnosis some years after testicular cancer, which is exactly my experience. Did you have radiotherapy for your testicular cancer? I
Category: Treating CML

Replies: 12

Last updated: 22 January 2019