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New member from Brazil

Hi, my name is Lucas, 32 years old, from brazil. i was diagnosed last december with 258.000 wbc (0 blast in my first CBC and 3% in another), HB 8.5 and a big spleen. BMB showed just 1% blasts and no fibrosis. My symptons were just abdominal discomfort and some lack of breath while running. I'm on generic imanitib and doing good, no side effects at all. I feel great, but sometimes i get a little down, especially because my ex-GP failed: i went for a check up in november 2012 and my wbc were at 17.000 and he thought it was an infection or laboratory error and told me not to worried. Well, one year later in here, a high sokal patient. Life goes on and i'm fighting for my life with glivec, acupuncture, nutritional monitoring and exercises.

I wish a healthy life for everyone here!

Hi Lucas, welcome to this club of reluctant members. I'm sorry your ex-GP didn't get it right, but eventually you did manage to get a correct diagnosis. It's good you are doing well on imatinib - so am I, nearly 5 years on!
Best of luck
Olivia

Thanks, olivia!
I'm glad you're doing well and kicking! yes, i'm a little bit hypochondriac so, when i felt my belly hard (i also had an enlarged liver) and it didn't get better, i went to see a doctor and i got my diagnose in 3 days - i did not sleep during this time. The "funny" thing is that i have a friend/neighbor that has CML. he was diagnosed in 2002 - he was 23 years old - with 300.000 wbc, low platets, bleedings, bruising and lost of weight, and he still here and PCRU!!

Hi Lucas and welcome,
Given that CML is so rare it is amazing that your friend and neighbour was also diagnosed with CML! Good news that you are both responding well to therapy. I am interested that you are taking 'generic' imatinib/Glivec.

At 3 months post diagnosis you should now be looking at a significant lowering of Ph+ cells and I was wondering what your test results are showing?

You are not alone in feeling 'down' sometimes, I suppose it comes with the territory.

Sandy

Hi, sandy!! how are you? i read a lot about your journey, you're such a warrior! a winner!
everybody gets amazed when i tell that i have a neighbour - and childhood friend - with CML. Maybe that's the reason i did not panic when the doctor told me my diagnosis.

Brazil produces generic glivec since 2013 and our health system pay for it. We also have nilotinib and dasatinib for free, but only if glivec fail.
I did not take the PH+ exam yet, because i didn't finish my third month of therapy - i spent eleven days on hydrea -, but i expect for good results. I hope everything's ok with me and soon i can put cml in the back of my mind.

Lucas

Hi Lucas,

Please be sure to update us all here when you get your results. I am glad to hear you have access to both 1st and 2nd generations TKIs in Brazil. In the UK, you can access nilotinib as 1st line as well as imatinib, dasatinib is available through a special fund should you fail nilotinib.

I am sure you will respond well - as long as you have a proactive doctor who monitors you correctly.

Thanks for the kind words,not sure about the warrior status-I just wanted to stay alive ;o)

Sandy

you're a warrior. you fight for your life. i know many people who gave up, who lost the will to live.

I'm being treat at a hemocenter (i spent some time in another city, in a great hospital, just to do some tests and exams). they have a specialized ambulatory for CML patients. The structure isn't the best, but a like the doctors. At the beginning, i had weekly appointments. when my counts where normal (since 3 weeks on glivec), I started to have monthly visits (i'm around 7.000 wbc). I'm thinking about have another doctor (via my insurance).

As soon as i get my results i'll post here. i hope you're right about my results!! sometimes i get stressed when i read about resistance, mutations and how these things are more common in high sokal patients and those with high cml load (i had 95% by FISH)...but that's life, i'm doing my job being adherent, eating well and doing exercises. :D

Thanks for the support!!

Hi Lucas,

You and me are "belly buddies". I also had a very enlarged spleen and liver. Big enough for me to be really confused about why I was getting much "fatter" when I was going to the gym all the time. Of course to all made sense eventually!

I am glad to hear your optimism! It sounds like you have done your research and understand things pretty well. I'm about the same age as you (2 years older). We're often told this this disease is more common amongst older people, but the people I come in contact with are often younger. Perhaps that's just who is more likely to be on the internet!

I'm glad you found us all here. Like me, I hope you will find answers to questions you have. I know I have found this group invaluable.

David.

Hi david, my belly buddy!

I thought my belly was getting stronger, maybe a muscular problem. i went to the gym in the morning and to the doctor at night, just to show my belly and he joked: "a lot of people want a belly like yours, so why are you complaining" :p. Then he felt my spleen and my nightmare began. 3 days latter i was told there i have cml. At first i did not panic because i have i friend with cml and knew that the treatment is "just" one pill.

Soon i started to read about cml and found out that it's a much more complex disease, with phases, progressions, etc. Well, i started to panic and felt depressed. Cancer was my biggest fear and i always tried to avoid this disease. i never smoked, never drink much, don't eat fast foods or fizzy drinks, always did exercises. shit happens.

Now i'm much more stable. I know that bad things can happen, but i also know that most of patients do ok for long terms and i try to focus in this. Sometimes i read - include here - about someone who fail treatment, progress and eventually die, but, thanks god, this is not the rule. So here i am. fighting cml. I feel very lucky to have no side effects (even wondered if the treatment was working :D).

I think there's something wrong with this world. there are a lot of young people with cancer. I have friends who - in theirs 20's or 30's - had/have AML, CML, lymphoma, thyroid cancer, etc. Sadly, i lost a friend to pancreatic cancer. she was only 33! where I am treated most patients with CML are young. That's crazy!!

This forum is amazing. a lots of good information, compassion and some humor. I hope i can come back to england to visit some of the members!

I hope you're doing well, david. Cheers!

Hi David and Lucas,
This rings a bell(y) with me too. I too was going to the gym and yet feeling like I was putting on weight and having to lie down for a 2 hour sleep to recover after the circuit! In fact my over tight waistband on my jeans took me to the GP in the first place.

I had the idea that I was probably doing my sit-ups in the wrong way and maybe giving the muscles on my left side an unfair advantage over my right side! Silly me.
My rather optimistic reasoning did make my CML doctors laugh though.

But even so, I eventually agreed to have my very enlarged spleen removed and lost all the weight(4 kilos) on the operating table; I also lost 80% of my leukaemic load as it had taken up residence in my spleen- this was why my blood count only showed white cells at 17!
Then the Phase 11 trial (STI571/imatinib) opened and I flew off to Portland Oregon- the rest is an interesting story, but even a high Sokal score like mine did not mean imatinib could not get me into MR eventually.
If we know then that what we know now, and if dasatinib had been available at that point I would not have had an SCT- but I am still here and we know so much more and have so many more options now. So Lucas, don't worry too much about your Sokal score - you can re-assess your position from your 3 mth response to the first TKI, then either stick with the generic IM or change to another TKI.
Good luck and keep that sense of humour going.

Sandy

Hi

Can you please share with us your blood numbers at the time of Dx ?

1. WBC
2. Platlets
3. HEMOGLOBIN

When did you achieve CCYR and MMR response ?

What is your current dosage ?

More than 95% of the well monitored pa tines survives CML now.....So do not worry much

Thomas

Thanks, sandy! humour goes on! :D

Hi thomas!

Well, the first CBC i had: 260.000 wbc / 660 plts / HB: 9.7 / 4% baso / 0% blasts.

2 days later, at a new hospital, my counts were: 258.000 wbc / 630 plts / HB: 8.4 / 8% baso / 3% blasts

I don't know if the difference between the results was due to the difference in quality between laboratories or because i was to afraid and did not get to sleep for 3 days - really, i spent 3 days awake. I read ate trey's blog that sometimes the blasts can came out to the blood due to the lack of HB and, in this case, it shouldn't be consider as a prognostic factor.

The difference between the CBC was: if we consider the first one, i'm an intermediate sokal score. if we consider the second, i'm a high sokal. well, sandy told me not to worry, so i'll obey.

i did not have ccy and mm tests yet, but i hope i can get there soon!

I'm on 400mg imatinib

Hi

When did you get DX. What is your progress on wbc and HB ? How is your Spleen now ?

Thomas

Hi Thomas

I was diagnosed in december 19th - if my ex- GP was a good professional i could have taken a year before.

Within 20 days on glivec my counts were at 7500 wbc and stayed at this level. My HB is around 13-14 (i really don't' remember).

In my last appointment (1 1/2 months with glivec) my spleen still could be felt, but maybe that's my normal because i'm tall (at least that was what the doctor said. she wasn't' concerned about it, just me :))

CHR in 20 days with excellent HB.you are doing great my friend. Since it is 3 months over do a PCR , FISH and get the reading ....

Thanks Thomas!! If you (or any other person of this group) wanna keep in touch with me, please ask Sandy to send you my email address.

cheers!

Hi Lucas, just a note to advise that it is probably not a good idea to advertise your personal email on this forum as it is 'open'... i.e anyone can read it without registering.

I can edit it out for you if you want... or if you're OK with it staying there then I will leave it on.
If you want to get in touch with anyone privately then it is safer to use me as an intermediary and I can usually put people in touch with each other.

Let me know if you would prefer to leave your email on there and I will leave it. You can let me know via the following email cmlsupportgroup@gmail.com

Sandy

Please, sandy, edit the post. I did not remember that the forum is open.

Thanks!