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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
Nimbus2 on 15 October 2018

Category: Uncategorised

Replies: 8

Last updated: 22 January 2019

In the United Kingdom, does a CML diagnosis preclude a person from leaving his/her body for organ donation or for medical research?
by Nimbus2 (Jan 22)

I have the answers now. I wrote to the University of Birmingham in November, but they failed to reply.
The University of Leicester responded promptly and agreed that CML does not preclude the use of

by Nimbus2 (Nov 25)

Thank you, Nigel. I have had it confirmed that a person with CML cannot donate his/her organs to others. This is out of the question. However, my consultant sees no reason why a person with CML in

by Nimbus2 (Oct 16)

Thank you, Nigel. I think, having read these postings, that organ donation is a virtual no-go (save for eyes) for those diagnosed with CML. I loosely used the term "medical research" in the

by nigel (Oct 15)

I actually made this enquiry some years ago, I’ll have a look if I still have the email. I was told that technically yes, we can still donate as the issue is in the blood, not the tissue, however
Category: Uncategorised

Replies: 8

Last updated: 22 January 2019
Tanya Cuffe on 19 January 2019

Category: Uncategorised

Replies: 9

Last updated: 22 January 2019

Fatigue is ridiculous!
by Tanya Cuffe (Jan 22)

Thanks for that Dawn,much appreciated and much love to you as well ❤️Better get on antidepressants than trying self medicate on opioids!

by DawnD (Jan 21)

Hi Tanya, I took Lexapro after the breast cancer diagnoses. I was anxious and depressed. It worked really well. There are so many new ones out now, all having different ways of action, but they all

by Tanya Cuffe (Jan 21)

Thank you for that,Dawn.May I ask if you take antidepressants and if so,what?I will look into the books you mentioned as well.

by DawnD (Jan 20)

Hi Tanya, I too experience severe fatigue but it is more prevalent when my hemoglobin and Red blood cells are low. I also fight depression. Depression can have many causes, some chemical but other
Category: Uncategorised

Replies: 9

Last updated: 22 January 2019
charissa on 20 January 2019

Category: Side effects

Replies: 2

Last updated: 21 January 2019

Tasigna
by charissa (Jan 21)

Thank you Sid. I hope this forum can help me. I am happy to be part of this org as this will help me tell my stories and talk to someone who has the same condition as mine.

by Sid35 (Jan 21)

Hello Chacha,
I am so sorry to hear that.
Have you checked with Max foundation? I heard they have a help network. Please refer to this link.
https://www.themaxfoundation.org/global/asia-pacific/
I

by charissa (Jan 20)

Hi i am chacha from the philippines, i was diagnosed with CML 2013. before i used gleevec but my doctor change it to tasigna. It is very expensive maybe someone help me who still has tasigna
Category: Side effects

Replies: 2

Last updated: 21 January 2019
AF on 28 December 2018

Category: About CML

Replies: 14

Last updated: 18 January 2019

What’s new in CML
by LabNoir (Jan 18)

MD anderson in Houston is the only place offering this as a trial.
No trial in my case..me and doc decided we should give it a try based on early clinical results.I live in a free country

by AF (Jan 16)

Which hospital is offering this trial ? Is it in US or UK ?

by LabNoir (Jan 15)

I am close to MR4 after 6 month, been on and off Venetoclax. hard to say until I up the dose.
the important thing is that at 50mg, I don’t feel any side effect.

by AF (Jan 14)

Can you tell us more how long were you on the combination ( Dasatinib and Venetoclax) trial. Did your pcr drop ? Are u treated in the US ?
Category: About CML

Replies: 14

Last updated: 18 January 2019
Tedro on 18 January 2019

Category: Treating CML

Replies: 1

Last updated: 18 January 2019

missed my dose
by David Fitz (Jan 18)

No, just take it again at 4pm as normal and don’t worry.
David.

by Tedro (Jan 18)

Hello,
I take Sprycel 100mg once a day at 4pm. I missed it today and took it when I remembered at 1am, 9 hrs late.
Should I, then, take my next dose 4.5hrs later (8:30pm) and then the next day back
Category: Treating CML

Replies: 1

Last updated: 18 January 2019
Damian Gabilondo on 17 January 2019

Category: Uncategorised

Replies: 2

Last updated: 18 January 2019

New here
by Damian Gabilondo (Jan 18)

Muchas gracias estamos en contacto e iré informando, voy a ver si puedo traducir lo que publique gracias y espero que siga bajando ese par pronto

by Job Guerra (Jan 17)

Hola Damian. Primeramente disculpa mi ortografia porque casi nunca escribo en espanol y adicionalmente mi teclado no se presta para escribir en espanol. Pero de todos modos queria

by Damian Gabilondo (Jan 17)

Hello colleagues, I write from Argentina, I am Damián and I am 42 years old, 1 beautiful woman and 2 beautiful daughters of 10 and 13 years old, looking for this page and I really liked the
Category: Uncategorised

Replies: 2

Last updated: 18 January 2019