You are here

new member -Fernando- reposted from a previous thread

I am a chilean astronomer working at an European Observatory based in Chile. I was diagnosed with CML 28 Jan 2008, just two and half months before my 50th birthday. Previous to this I had been in what appears to be a flu after flu period for almos 6 months. I spend an average of 135 mights a year at an astronomical observatory (2600 mts above sea level) where my colleagues appeared to be sick all the time so I did not worry too much, until I got an urinary track infection which I thought was strange (I had never have one before). I went to see an urologist, took some exams, and found that the Lactic Dehydrogenase (LDH) level was high. He suggested that I repeated the exams in a month after the infection was over. When I did the LDH was at twice the previous value. Was immediately sent to take an hemogram and my white blood cells were found to be 13 times larger than the maximum normal range.

I was started with Glivec 20 days ago. No major side effects yet. In all the articles I have read in the web they discuss the side effects but not the time for their appearance. I am under the impresion that they can appear at any time. So some advice regarding this will be welcomed. My only side effects have been muscle/bone pain. Articulation pain if I stand for too long. Some minor eye itchyness/warmth/wetness.

My diagnostic was based on a quantitaive PCR and a kariotyping. It seem that I was 100% Ph+ in the baseline test before the start of glivec.

My wife has been a fantastic source of support, and perhaps more importantly, she gives me the strength and desire to fight for life. I am of the "CML amateur" type, wanting to read everything about the disease. Living in a country which is not at the forefront of research I want to make sure that I get all the best options. After reading the article "The median is not the message" by Stephen J. Gould, I want to make sure that I am well to the right of the distribution (see for example http://www.phoenix5.org/articles/GouldMessage.html).

Well, I will probably ask many questions later. I thanks the people who manage and contribute to this forum for their active participation (I chose to join this forum because it appeared to be the most active that I found in the web).

Fernando

hi Fernando and welcome to this forum. if you need any advice or support please do not hesitate to ask here. there is great hope for people diagnosed with CML. read as much as you can and you will become and 'expert patient' very quickly and that means you will be in control and not your disease.
i recommend that you read the articles and watch the webcasts under 'newswire' on the right of this page if you have not done so already.
the muscle and bone pain you describe are experienced by most who take Glivec. for me this side effect disappeared at 3 months but heat packs and relaxation/stretching exercises helped a lot. also walking as much as you can does combat tiredness...the only side effects that i experienced were low haemaglobin of around 10, peri-orbital edaema and watery eyes. other than that i was able to tolerate Glivec very well.
keep us updated about your progress and thank you for your kind words about his website.
Sandy ;o)

Hi Fernando,

Sorry that you have to be a member of this club.

Could you please contact me at zmiller@sympatico.ca

I have some information that I would like to share with you.

Zavie

Zavie Miller (age 68)
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
> 4 log reduction Nov/06
zmiller@sympatico.ca

Hi Fernando,

The best of luck, my friend. You have joined a great forum, very informative, understanding, compassionate, and positive.

Hang in there, the Glivec symptoms usually diminish with time.

Blessings,
Don

hi Don,
how are you doing? hope all is well and your symptoms of gvhd have improved?
love,
Sandy ;o)

hi Sandy,

it's always great to hear from you. I know how active you are -- and busy.

my gvhd is hanging around. i still have to take a blast of steroids on occasion to knock it back, but it isn't really that bad.

i have extremely dry eyes because of the gvhd and that is the most bothersome. the skin and mouth are tolerable.

just had a pet scan and pbpcr. the pet was negative and am still waiting to hear from MDA. the pet and pbpcr/bmb/bma have been negative for the last two years. i'm cautiously optimistic that it will remain so.

how have you been? i hear through the grapevine that you are doing extremely well.

take care,
love,
Don...

Hi Don,
i am glad to hear you are not too bothered by the gvhd but it must be wearisome at times. i am sure it will get better as the years go by and i hope you will find some sort of (alterative/comlimentary) therapy that will help with the dry eye symtoms.
it is great to hear your pcr remains undetectable. this is the main goal and a great place to be.
and yes i too am fortunate to be pcrU and have been since March last year. i do suffer a few joint problems and maybe this is to do with the after effects of chemotherapy but i do not need to take any drugs apart from vits and minerals (and my standby large doses of Vit C). i have now added st. john's wort to my daily intake. i can take this of course because i no longer need to take a TKI like Glivec etc. as it is contra-indicated.
it really does help with keeping up energy levels and also helps keep a positive frame of mind.
it really is good to hear from you Don and i send you my very best wishes for full health.
love,
Sandy ;o)

I just wanted to give my thanks for all the words of encouragement. I have been on Glivec a bit over a month now and the latest blood exam show that my counts are nearly normal. Not mayor side-effects yet.

Un abrazo,

Fernando