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Hello Everyone

I am new to this site. My name is Jeannette and I was diagnosed with CML in May 2007.
My username is Fenton because that's my husbands name. He is the one who started looking for information on CML not long after I was diagnosed.
I only logged on today, 9 months later.
I have hardly looked at anything to do with CML because I thought that if I keep reading about the disease, it would make me become obsessed with it. I considered that if I read about treatments and disease progression, I would start imagining symptoms because I read about them.
I have now decided to read more information about the subject and how other people are coping with CML.
I started on Glivec 400mg daily in May after diagnosis (I had stem cell harvesting just before treatment) and have had a very successful response, with the Haematologist confident that I am hitting the correct targets to be in molecular remission in due course.
I have 3 brothers and 1 sister and 1 brother is a match for me should I require bone marrow transplant.
I chickened out of the spirit trial.
I am a Junior Sister on an Ear, Nose, Throat, Facial and Ophthalmic surgical ward and on diagnosis knew nothing about CML itself and very little about leukaemia as a whole.
I am 46.
Prior to diagnosis, I went through an extreme amount of stress which carried on over a long period of time (about 4 years before diagnosis).
I did wonder whether the stress 'set it all off'. But many many people go through exteme stress over long periods of time especially in countries of severe hardship and I don't believe incidence is higher for them.
I am so pleased with the results of the Glivec (I am now on 300mg per day because I became neutropenic).
I do get stomach upsets, bone pain, tiredness and spells of poor concentration BUT these symptoms are a small price to pay for the excellent response I am enjoying in my improved blood results.

I send my regards and thoughts to all of you experiencing this disease and your families because they go through the mill as well

Jeannette

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Hi Jeanette and welome to this forum. i do hope you will gain a lot from joining us here. facing up to CML is half the battle.
if you have any questions then please use this forum.... that is why we exist to help and support others with CML.
best wishes,
Sandy

Hi Jeanette,

I too was dx in May 2007. May 30th is a date I will remember as long as I live. I too was under massive stress for some time beforehand (my wife thought I was a prime candidate for a heart attack) but there does'nt seem to be any firm evidence that I have come across that it could be the cause although I think it quite likely.
My wife first found this site and like you it took me some time to pluck up the courage to look at it. I based my reluctance on the theory that "what you don't know you can't worry about" or to put it another way the more potential problems you read about the more you will worry about.
Anyway I log on from time to time now and just try to ignore whatever I think doesn't apply. As someone once put it (I think it may have been on this forum) "I have CML as a disease, not as a hobby as well".
What were your latest PCR results? Mine was 1.32% (sample taken early Dec) down from 98% Ph+ at diagnosis so I haven't got to a 2 log reduction yet. I am hoping to have got there next time though.
In my case the bone pain and upset stomach wore off after a few weeks or so but I do still get quite tired and all those little 1 hour jobs now seem to take 3 hours!
I hope you continue to improve.
Best wishes,

Colin

Dear Sandy
Thanks.
I have already learnt about log reduction by asking on this site. I always hurry in and out of my haematology appointments and don't ask much. I have from the beginning because I was so shocked about it all. Over the months I have become more confident about the treatment and my prognosis.
It's definately interesting to read about others in my situation. It's such a rare disease that you feel all alone at first.
Kind regards

Jeannette

Dear Colin
My date was 11th May 2007.
I had a PCR test done in Dec 2007 and saw the haematologist Jan 8th. I was told 'great news, you are on course for molecular remission' and I was shown a graph showing a downward trend with a figure of 0.98% written to the side of it. This must be my PCR. I have only learnt about the term log reduction by reading this site.
This sounds like I am not told anything but I am a quick 'in and out the consulting room' sort of patient. I take my prescription and I'm off. The haematologists tell me its going well and I'm out of the chair like a bat out of hell.
I'm going to ask lots more questions next appointment (12th Feb 2008).
Glivec gives me leg cramps, hip pain, tummy upsets, tiredness and I feel the cold through to the bone.
I did need a bit of time off work after my flu and pneumonia jabs because they knocked me for 6, but otherwise I try and just get on with my life and work.
The people who invented Glivec are my heroes.
I will continue to dip in and out of this site for moral support and to get easy to understand answers to questions I've got.
I am interested what you say about the tiredness because SAME HERE! I used to be full of beans. Things take me 2 or 3 times longer, both mentally and physically. However, these things I can cope with. I am alive and things are going well so I count my blessings. I have been a nurse for 25 years and it is most strange to be on the receiving end of health care.
My husband is also a nurse so I am very lucky to have him with me during this time. He also runs half marathons and now does them to gain sponsors to raise money for our local leukaemia support group.
I think health improvements can come from the mind as well as medication etc so we try to keep positive.
Regards to you and your family.
Hope you next PCR score is good.
Take care

Jeannette

Hi Guys

I am also a May 2007 club member. I was diagnosed on 17th.

It is interesting reading your PCR results as I have just had my second one and it is still at 24% down from 32% back in Sept. At dx I was 100% PH+ but I don't know what the BCR/ABL was at that point (I didn't know enough to ask). I reached zero PH back in Aug and have been surprised at how high my BCR/ABL has been since.

This site has been a great help, I have even met another member who lives close and he provides me with great support(Hi Phil).

Lets just hope for continued, sustainable improvement for us all.

Take Care

Helen

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)

After diagnosis, it took me 9 months to read stuff about CML on the internet site. I just read through my BACUP book and got on with it. I did feel rather alone because its not a very common condition. It's great to read postings on this site because here, I am not alone. Also, everyone is getting the same sort of symptoms and aches and pains associated with Glivec etc so I know that what I am feeling is fairly normal for the treatment I am on.
I agree with your wish for your 'continued sustainable improvement' comment.
It's funny really, people keep telling me I look glowing with health lately so somethings working.

Love

Jeannette

Welcome to the CML site.
I am so glad you at last have a diagnosis after all those months of feeling unwell and that you have been able to start on Glivec and so far have not had any great ill effects.
It has been such a wonder drug for me.
I can remember so clearly how shocked and disbelieving I was just after my diagnosis. I remember my haematologist telling me about Glivec and how it has revolutionised the treatment of CML and I remember thinking how lucky I was to have the illness now rather than years ago when there were less options.
It's heartwarming to read on this site people who have been surviving years and years with CML (some even diagnosed decades before Glivec etc).
Some of the people on this site seem to know loads more than the haematologists as well (with easier explanations).

Love to you and your family

Jeannette