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#1 saiyogo

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Posted 30 June 2011 - 05:31 AM

Hi everyone.

My name is Ph?m Xuân Nam, with Ph?m as the family name. I am a 22 year old student from Hanoi, Vietnam and I also am the new kid on the block. I've just been diagnosed with CML last Friday (June 24, 2011, after the bone marrow and chromosome tests). The news came as a shock to me because I had no visible symtome.

I was having a regular check up last Tuesday (June 21) and have a elevated WBC of about 34k. The doctor thought I had some kind of infection so they scheduled me to do the test 2 day later. So on Thursday (June 23) I have my blood checked again and the WBC raise to 43k (the RBC is normal and PLT is a little high at about 510k). So after that on Friday I went to the National Institute of Hematology to have a more proper check up. That day my WBC was 49k (I am a little shock why it went up so quickly).

So after the bone marrow and the chromosome test, I was diagnosed with CML and immediately received a dose of hydroxyurea (and I supposed to have Gleevec anytime soon, but because my country got Gleevec from a Norvatis donation program called Gypap, it may take awhile (about 1 month). After 3 days I came back to have my blood checked and did an ultrasonic test. My WBC at June 27 is 47k and the ultrasonic test revealed no abnormality.

Ever since last week I have been doing some research about CML and found many helpful site, such as this one. I literatually helped me to recover from the emotional breakdown that me and my family had suffered. So now I am positive that the outlook of CML is not as grim as it may seems.

There are many things that may come to me, just as the rest of you. So I want to become a part of the community and make friend with anyone around here.

So what is your opinion of my case? Do you suggest anything that I should do at the moment to improve physically and mentally. Any helps is appreciated (and please excuse my English as it is not my native language)



#2 hannibellemo

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Posted 30 June 2011 - 06:38 AM

Welcome, saiyogo! You've found a great site for up to the minute information and caring people! It sounds like you were dxed very early and that is a very good thing.

Trey, our resident CML guru, has put together fantastic information for us, so fasten your seatbelt and get ready for a little "light" reading.

http://community.lls.org/blogs/CML

I'm sure you will have lots of questions so you know where to come when you're finished reading...

Never apologize for your command of the English language  - yours is probably better than 90% of us who speak it as our first language and I know absolutely no Vietnamese (perhaps PhilB though...)

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#3 Marnie

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Posted 30 June 2011 - 11:04 AM

Hi, Saiyogo, and welcome to the club.  You have found a great site here, with lots of friendly and helpful people.  It sounds like your cml was caught early, so you are in great shape.  It will take a little while, but you will find a new "normal" and your life will go on much as it was before.  Good luck with the medication. .. it must be very frustrating and scary to have to wait before getting started on Gleevec (or whichever drug you'll be taking).

Your English is great.  I only wish I spoke a second language.  I've been working on Spanish, but am making only slow progress.  My mother was an ESL (English as a Second Language) teacher for elementary school and highschool stidemts, so we  had lots of southeast Asian students and families at our house when I was growing up.  My mother worked in refugee camps in southeast Asia and has visited Hanoi.

Good luck and welcome!

Marnie



#4 Bessie

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Posted 30 June 2011 - 12:32 PM

Saiyogo,

I am so sorry you are a member of this club but hey, we're a pretty great group of people! 

This discussion board has been a great source of information and understanding for me and I know it will be a great help to you.  I thank God every day for my Gleevec and after almost 4 years since dx I am leveling out with side effects...I think!  (little CML humor!).

You have a great support group here and please keep us informed on how you are doing.

You are in my thoughts and prayers,

Bessie



#5 Susan61

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Posted 30 June 2011 - 04:00 PM

HI:  Welcome to our group.  Joining us was one of the best things you could do for your diagnosis of CML.  You will see we are all like family on here.  Always supporting each other.  If you ever have any symptom that you think we might find insignificant, please do not think that.  Write about anything your feeling at anytime.  We all experience different side effects.  Some are on different drugs than others.  Gleevec was the first TKI that came out back in 2000, and now that they know how to treat CML there are other drugs which some people found better for them.

I was diagnosed in 1998.  There was no Gleevec.  I also was on the Hydrea until they could get me into the clinical trial for the Gleevec.  I started Gleevec in Oct. of 2000, and it has been a miracle drug for me.  I will be on Gleevec 11 years this Oct.  I hope that makes you feel good about the advances that have been made with treating CML.

Anything you learn on here, please share it with your family.  They need the support to, so they know you will be okay.

Please keep us updated and like I said ask us anything.  You will be getting your Gleevec.  I tell everyone the most important thing is to take it with a full meal to prevent nausea.  I take mine with Breakfast, and some people like to take it at night with a bigger dinner.  You will find what works for you.

Again Welcome and God Bless You

Susan



#6 lala

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Posted 30 June 2011 - 07:40 PM

Dear Susan,   You wrote the nicest note.  What a relief for their entire family!  This board has been so helpful for so many...including me.  THANKS to everyone.  Lala



#7 Pin

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Posted 30 June 2011 - 08:28 PM

Hi Saiyogo,

I've also just been diagnosed (June 9). I had to wait at least 2 weeks for my script for Gleevec, there was an ash cloud hanging over Australia so a lot of flights were cancelled including the ones that my script was on. In the end they had to write me a special script, and I am still waiting for my proper one. They didn't seem too concerned though about the wait though, and my white cell count was much higher than yours (157k at diagnosis) so I hope this helps you feel a bit better.

One thing I have been doing to help myself cope with all of it is writing down positive quotes that I find on the internet, from my doctor, and from people on forums like this one about the treatment and prognosis of people who have CML (e.g., "most individuals living with CML can expect a normal life expectancy", which is from here: http://www.nationalc...kemia-questions  and "you are not alone we are all here and you will make it", which was something a lovely person told me on an Australian forum.

I keep the quotes in my phone so I can look at them every time I feel anxious. I find it really helps for me to feel less scared at this stage in the process, as really I am only just beginning to accept what is happening.

I have found that the generosity, compassion and understanding of people on forums like this one is unlike anything I have never experienced in my life and I am so, so grateful that we have this kind of support.

P.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#8 Guest_billronm_*

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Posted 30 June 2011 - 09:25 PM

Dear saiyogo,

Welcome to our site I just found them last november I have had cml for 4 years and I was terrified. Then I stumbled upon this site and now it's my home away from home.This is like an extended family

and any question you have or fear or side effects you might have you will get the right answer I don't understand a lot of the terms but my cml is under control. And no question is to dumb and don't be embarrased about any subject, because we have all been in the same place. My heart breaks for you because you are so scared and in my case nobody really told me much about cml. I'm sure you can look up a lot websites, and Our Guru Trey and several others know so much about cml.And me I'm just on the site to welcome New members and help as much as I can. If I ever try to make a scientific comment delete me immediately: I have a daughter she's 44, now she was my pride and joy. She was just so smart and pretty and a good dancer she got awards all the time. Made Deans list in college. She sure didn't get that knowledge from me.So I know how I would feel.

I brought that up because your parents must be devastated, No matter what kind of diagnosis you get all you hear is cancer.Please ask them to join us on our site, and reassure them cml is not a death sentence and right now there are 3 medications she can take. (we call them tki ) onc is short for oncologist,dx is short for diagnosix.. And she'll live a long full life. Feel free to jump in anytime someones always around. I haven't been able to sleep so I am up and down all night.

Best wishes I'll keep you in my prayers.  Billie Murawski     I got a new computer and I'm playing around with it Ignore the photo, It was taken about 5 mos before dx.but I'm much older than you.

Oh I hope you have a sense of humor. Were not all gloom and doom but if you need to get on site and vent let it all out. And we'll all help you get through it.



#9 Tedsey

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Posted 30 June 2011 - 09:25 PM

Dear Saiyogo,

Hello and welcome.  I am very sorry to hear about your diagnosis.  It is such a traumatic experience.  It takes some time to get used to.  But, you do get used to it.  And for most of us, life does go on with some normality.  There is much hope for CMLers today.  It appears that people diagnosed early, like you, do very well.  I wish you a speedy recovery.  I am here for you too.  You are not on this journey alone.  And as much as friends and family can be supportive, having a chronic illness is very lonely.  It is so nice to have a forum where our fears, confusion, concerns, and joys are deeply understood.

By the way, I absolutely love Vietnam.  I was lucky enough to spend some time there about six years ago.  It was like a dream.  You report that you are in Hanoi.  Although I have never been up north, it is one of my dreams to go there and also visit Halong Bay.  I think it is one of the most beautiful places on earth.

Quick healing to you!  All the best,

Tedsey



#10 saiyogo

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Posted 30 June 2011 - 09:48 PM

Thank you everyone, I can't describe how grateful I am to receive your kindly words. And yes, now I can think of myself as a member of the CMLer's family here.

About the delay of my Gleevec treatment, because in my country all the Gleevecs were sponsored by our national health insurrance and Norvatis, we do not have to pay for the medicine, however, these involves a lot of paperwork between Vietnam and the US that it could take more than a month, and every CML patient in my country acutally have to endure the same wait. I am thankful for that program because without it, I and my family could never manage the cost of Gleeve.

I have also asked my doctor about my treatment until then. He said my statistics were stable and there would be no problem to worry about. At the moment my prescription includes 1.5g Hydroxyurea (3 tablets) and 300mg Allopurinol (1 tablets) along with some Vitamin and Calcium medicine. So what do you think these med will help me? I suppose to have an appointment with my doctors next Monday.

About the side effect problem, do you guys know about the side effects of Hydroxyurea, how is that compared to those of the Gleevec that I will have in the future?

At the moment I am doing well except for some light fatugue and loss of appetite (I have no trouble getting asleep but often wake up one or two times during the night). And I don't know whether it is the side effect of the med or my anxiety.

Once more time I thank you for your support and I really want to know more about all of you. So if anyone is interested, I am available on Facebook (Email: saiyogo@gmail.com), Skype (saiyogo) and Twitter (saiyogo)

Xuan Nam



#11 Susan61

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Posted 30 June 2011 - 10:44 PM

Thank You for what you said Lala.  I always just speak from my heart, because we all know how we felt when we were first diagnosed.  I will never forget that day.  It does change your life in so many ways.  I can tell the whole story about how I was diagnosed in 1998, but things are definitely different now so many years later.

Our family of CML people here is getting bigger each day.  I am having trouble remembering who is who sometimes, but they all need to know that this battle is being fought to cure CML like never before.  I might not see the cure in my lifetime, but all these young people have a future to look forward to with all the advances that have been made.  I just hope all our information that we all share helps everyone with any doubts or questions they have about where they are going with this whole thing.

I have been very blessed,and my faith is what gets me through each day.  Positive Thinking is a great medicine too.

Susan



#12 Pin

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Posted 30 June 2011 - 11:03 PM

I was told that most people don't really get side effects from Hydroxyurea - I don't think I really did. In the beginning it is hard to tell what is stress/anxiety related and what is the medication. I barely ate for a week, but I am feeling much better now and eating much more. Do you have any access to counsellors/psychologists, this has really helped me - if you are really having trouble coping I think it is important to consider this - just remember that what you are feeling is really normal.

The Hydroxyurea is to lower the white cell count, and the Allopurinol is to make sure you excrete uric acid (to prevent gout).

As to the side effects of Gleevec, I am very new to this, but from what I can tell - everybody's reaction is different. Most people seem to get some sort of combination of muscle/bone pain, eye/leg swelling (mine is worst in the morning, but by the end of the day it is basically normal again), some people get diarrhea - but from my understanding there is an awful lot of individual difference in this but for most people the side effects are manageable.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#13 Susan61

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Posted 30 June 2011 - 11:22 PM

Hi:  I do not think I got to welcome you also to our group.  You mention that muscle/joint  pain.  I always tell everyone not to get upset,and just think that the Gleevec or whatever drug your taking is doing its job when you feel that pain, its the drug killing all those cancer cells.  It really does get better with time.

There is a difference between the joint pain and the cramping.  The cramping is like a charlie horse that I still get even after all these years.  Not everyday, but I do get them often.  I also have the edema in my eyes.  I try to watch the salt intake, and I use a icepack on my eyelids sometimes.

I also had a weight gain, and some people complain of weight loss.  Now I am having trouble losing weight as I gained a lot.  You will see how everyone reacts in a different way to it all.

Susan



#14 Pin

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Posted 30 June 2011 - 11:37 PM

Hi Susan, thanks

I guess I really didn't introduce myself very well (or at all!) - I just barged in and started asking questions

Im a 29 year old female from Australia - I was diagnosed about 3 weeks ago and have been on treatment (Gleevec) for just over a week now.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#15 GerryL

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Posted 01 July 2011 - 12:03 AM

Hi salyogo,

Calcium is a good supplement to be taking with the Gleevec as Gleevec can stop the body absorbing calcium, so you can become deficient. A multi vitamin doesn't hurt either. Another suggestion is to get onto some probiotics through either a supplement or a yogurt with acidophilus, this will help with any stomach related issues including diarrhea.

Side effects from the Gleevec affect people in different ways, some get hardly any, others get a lot. But if they start to occur just hop on here and mention it and there should be help available.

Gerry



#16 jjg

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Posted 01 July 2011 - 01:15 AM

Hey Pin, that was bad luck with your script, guess it should be flying soon. But seriously the whole process of sending a peice of paper all the way to Tasmania so that somebody can stamp it and then sending it back again...there has to be a better way! Still when you see the "real" cost next to the PBS cost on the glivec box you've gotta feel grateful. I nearly passed out when I saw that.

I live in Melbourne are you anywhere near by?

I need my second script to go on its overseas trip to tassie in a couple of weeks. I'd never thought about the ash thing causing problems there.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#17 Pin

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Posted 01 July 2011 - 01:41 AM

Sure was bad luck - on top of all the other bad luck I guess.

The Tasmania thing baffles me - but yes, I had instant jelly legs when I read the cost - it's difficult feeling like my survival is dependent on whether somebody else says I can have it or not though. Weird. Does that get any better with time? I'm not near Melbourne but I wanted to say thank you to you for comments and advice, it's helpful for me to have someone here who knows how our system works - each country is different with how it manages it (and I'm guessing maybe even each state).

I hope my new script comes soon, just so I can feel more secure about it!


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#18 GerryL

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Posted 01 July 2011 - 01:49 AM

I'm waiting on my next script, but luckily still have a month's supply to pick up from the chemist. The federal government has centralised a lot of things - they figure it saves them money.



#19 Pin

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Posted 01 July 2011 - 01:53 AM

Hi Gerry

How long does it normally take for them to send it to you (also, I assume they send it to your house?) and is it regular mail (i.e., not registered)?


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#20 GerryL

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Posted 01 July 2011 - 02:07 AM

I'm not sure if it is the script or the approval for the script, but it goes back to your specialist and then they forward it on or get you to pick it up. Originally my specialist was keen for people to go in and pick it up as he didn't like the idea that it might get lost in the post but his receptionist now posts it to me in an Express Post envelope.






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