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hello newbie

hi there everyone,

I fell this maybe a major unload so apologies in advance!

I am from England,staffordshire but im currently living in perth Western australia.  I went to the docs with a cold that wouldnt go away, feeling tired and picking everything going up in the last 12 months. decided to go pay at the good docs as I was sick of feeling tired etc. I was convinced I had under active thiroid due to mom and nan having the same.

How wrong could I have been (im def no doc!) Blood test , more blood tests. diagnosed with CML. Im 34 yr old female. Been to a specialist here he has put me on glevac 400mg . He has told me that I have been caught early and didnt seem to concerned. Had bone marrow test done and have to go fro blood test today and then back to specailist on the 17th nov. I have no idea on blood counts etc , not sure what I was told all a blur to be honest.

The worst part of this whole situation is how do i tell my parents over the phone??? im more worried about that than me being ill. as soon as Im allowed im booking a flight home for couple weeks holiday so fingers crossed.

I feel sooo much for by boyfriend who has been so good but its alot for him to deal with i feel. we have lived in Au for 2 yrs but only been in perth for 4 months so we have no proper friends just people we kind of know . one couple have been helpful but they are only 21 so they lack life experience (no offence meant to anyone) all she keeps saying is but your going to be fine ..

work are treating me like some one ready for the scrap heap

so I really could do with some advise, sorry so demanding ! thank you in advance xxxx

Hello Claire,

Welcome to the club that no-one wants to join. Having said that all of thee members of this site are very helpful & have answers for just about any question that you may want to ask, so feel free to ask away. I was diagnosed 3yrs ago, & although Gleevec did not work for me, the second line drug Sprycel has & my bcr/abl count is now 0.005%.

 You will probably struggle with all the numbers to start with, we all did, but you will soon pick up the jargon. A good place to look is the FAQ page at the front of the site, it will help you a great deal to have a good look around the site.

 What you must remember is that CML is not a death sentence, but a cancer that can be controlled by the drug therapy that you are offered. It is very important to take your drugs everyday & at the same time, I take mine with breakfast, even if you start to suffer from some of the many possible side effects, they do lessen as time goes on. Hope fully in around 6 weeks you will be in Hematological remission, i.e. your white blood count will be back to normal levels.

 When you see your doctor it will help if you write down any question that you have before hand, because we all forget when we get there, & make a note of your blood levels so that you can see how things are going. You are on Gleevec 400mg, which is the 1st line treatment for CML, & works perfectly for around 60% of patients, but if for some reason it does not work, or the side effects become to bad, there are 2nd line treatments available, but you don't need to worry about that yet, & hopefully never will.

You will probably find that Fatigue is the biggest problem for you at work, as I used to feel tired around 1pm, but as long as I kept going for the next hour, all was ok. But as with all of these things, each of us is different & we react in different ways.

What you also need to remember is that as long as you take your drugs & they work well, & things start to settle down, you should be able to lead a normal life, with a normal life expectancy, & die with this disease & NOT from it. 

We are all here to help, please point your parents at the site, they can come on & ask questions, we are only to pleased to try & help answer any questions.

Best wishes, hope to hear from you soon

Bob

As we always say - welcome to the club none of us applied to join. However, as many other people have also said, if you have to get leukemia, get this one as the drugs are now so good. I was caught early and diagnosed (aged 50) over 4 years ago, am on 400mg Glivec, and from 99.9% abnormal gene on diagnosis I have been below 0.00% for nearly 3 years. Don't let your employer away with the scrap heap treatment - a very significant majority of people who are diagnosed respond well to glivec or one of the other TKIs and have "near normal life expectancy" detailed in many published papers.

It is very confusing at first, but this site is a great resource. When your brain is ready for it, go to the FAQs page and read about glivec and the blood tests - that will help get your mind around what's happening. One thing I would recommend is that you take paper and pen with you to your appointment on 17 November, and get all the test results - try to get them to give you a copy if you can. You can then check them against the details on the FAQ page and start to understand your own particular condition.

Be ready for some side effects - muscle & bone pain, fatigue and some nausea are common, but they mainly fade in a few weeks. I've been lucky and reason I'm a bit tired today is more about 4 hours of very hard tennis in the last 2 days than CML. Take the glivec after food and with a large drink of water.

Finally for now - don't apologise for unloading - we all needed to do it sometime, and that's one reason many of us drop by the site - so we can help others the way we were helped ourselves.

Hugs (if that's not too familiar)

Alastair

 

Hi Bob - looks like you type faster than me - and didn't get a phone call while doing it!!

A

 

 

Hi Claire,

Without repeating what the others have said all looks good these days. I was diagnosed 6 weeks ago and felt I am sure like you and many others. Read the site Q&A section and the forum for other peoples comments.

I started Glivec 3 weeks ago, and other than some bad cramps for a few days and a bit if knee / groin discomfort feel ok, and am sure you will as well. I gather most the side effects pass. Ask questions on the site it is very useful as you don’t know what is what or what to expect. One thing you may get a little contradictory advise from the doctors, to that which you read thus this site and it helps as you can search for a  question you may have, and some one will have posted before, thus some experienced answers.

Hope this all helps. Your folks will be upset but after reading some, will feel better i am sure. It just the word, such a shock for all.

   Nigel

Hi Claire... so glad you have found us this early after your diagnosis. We can and will help you. I understand exactly what you mean by the desire to protect your parents and loved ones from the stress and worry your diagnosis will inevitably cause... but do not tell your parents over the phone- and before you have understood your prognosis and options for treatment. 

 

I have provided a link below with an Australian online organisation called Talk Blood Cancers who have a forum dedicated to CML.....they will be able to support you and give you information.

 

http://talkbloodcancer.com/index.php?option=com_fireboard&Itemid=2&func=showcat&catid=7

 

I am not sure of the CML experts in Perth... but I| am sure they will be able to help with that too.

 

Meanwhile, as others have said already.... you will survive this diagnosis as the available therapies are so effective for the vast majority- and especially for newly diagnosed in chronic stage.

 

Take your time- and try not to be responsible for others fears and emotions. .. easier said than done I know, but they will get through the shock and find ways to cope.  

Best wishes,

Sandy

Just wanted to say Hi and glad you found the forum. I was diagnosed this 14th Oct just gone so am also new to it all too ( lovely 40th birthday present!). I discovered this site by chance and  I too posted a "newbie" request and as you've found you'll get marvellous support and information from everyone. As people have said your parents will be shocked at first ( everyone is especially  with the name) but once they are informed  about it and your treatment and especially once they can see how much better you feel on the treatment they'll be reassured. I know what you mean about not knowing about blood counts etc it was too much for me to take in especially the first few weeks ( I know that blur feeling!) but I'm starting to get interested in it all now so just reading bit by bit especially this site and what info the docs gave me. There's some good tips suggested by the others here such as making notes and I'll be doing that as well. You'll find you do get a mixed response when and if you tell people in your everyday life but just let it go over your head as when they're not up on the subject people ( as lot of people aren't - we never heard of it until dx) people just go by what ( or how little they know).  Feel free to give me an email for any further mutual support joanna104@sky.com. I do find people on this site really help me through emotionally . There's loads of practical help as well. What working for me is that I take my tablet just after my evening meal with a glass of water and job done. Joanna ;)

Hi Claire,
I was in your exact situation just over a year ago!
I am a 37 year old from Wales and I've been living in Sydney for nearly 5 years.
I was diagnosed in Sept 2010. As you've mentioned one of the hardest things is telling your family back in the UK . My brother ended up doing it on my behalf in person as I couldn't bear for them to find out by phone or Skype but I couldn't get over to see them as I had just come back from a holiday there when I was diagnosed!
It has been a rollercoaster year and a bit but you will soon settle into the 'swing' of things and get to know the jargon etc.
This forum is an excellent source of information and support. The Leukaemia Foundation in Australia are great. Talk blood cancer is the online forum and they also have telephone forums and a newsletter for CMLers.
Light the Night is their annual event. V uplifting and a chance to give back. I raised 700 dollars this year and had a great night.
I'm happy to be in email contact (kbdunn@iinet.net.au) too.
Kate

thanks everyone for all the helpful comments and support , not to mention the hugs well recieved!!

Its been a while apologies, had a mystery virus and was wiped out for best part of a week , then flew home so back in the uk at the mo spending time with my family which has proved to be the best medicine!!

In the end i told my dad over the phone as he has had cancer so knows how it all feels, he then told everyone i think my mom has found it the hardest to deal with but is staying up beat and positive

thanks kate I have already called Lu support they where most helpful , well will be in touch when get home ,

 

off to bed! thanks again everyone xx

 

Dear Claire,

As promised here are the contact details for the Leukaemia society in Australia  person working in Perth.

 

Sarah Langmead

Support Services Manager

The Leukaemia Foundation

First Floor, 20 Gibberd Road, Balcatta WA 6021

T:  08 6241 1021      

www.leukaemia.org.au 
Vision to Cure. Mission to Care.

 

Hope this will be helpful when you get back to Perth. Good luck, and best wishes

Sandy