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Life with CML but I'm not ill!

Just registered tonight (26/1/18), presented at my GP the day after Boxing day, not unwell, no symptoms, just a firm patch, where I now know my spleen lives, patch immediately under my ribs and about 120mm deep by 200mm wide. GP said unless I had malaria it was CML, bit of a shock, really serious without feeling ill, blood tests that morning and a visit from the GP at around 16:00, unheard of. Clinic next day, so no time to dwell but the roller coaster had started. Straight onto Hydroxycarbamide, who says the NHS is bad, due to New Year didn't get the mutation confirmation till 9/1/18, onto Imatinib. This week at clinic my WBC had dropped from 223 to 22. The main issue I have is, how can I get better if I was never ill? It's a bit like being stopped in the street by a stranger and told you've got CML and a fortnight later someone else stops you and says your sorted, take a tablet. No illness, no procedures, no recovery, very mind testing. My wife is struggling with her husband being ill but I'm struggling because I've only got someone's word and some numbers on a bit of paper. The only side effects so far are some swamping night sweats and some odd muscle pain in my upper arms and thighs. Seeing as I've never had CML before, I've got no reference, hence joining this forum.

Onwards and upwards.

Andy

Hi Andy, welcome to CML support, and CML. I am you 6 years on. No illness, lost weight, enlarged spleen and a white count of 148 etc. Couple of days of work and back to it, some pain with legs initially then all good I am pleased to say. NHS has been great, a little slow sometimes with appointments but hey. The thing to remember is you are ill, quite seriously. People get better as you say without being ill, as you will. You may not feel it, and life goes on but do take time to adjust, even when well, as you are your head takes time to get used to the idea of your illness, as you have found. No, no operation, nothing “solid” to cut away. You will have up and downs, mostly often centred round blood tests results ( PCR )

The recovery, and yes there is one will take time. You have a disease burden, and your Imatinib will reduce this down and down, there are goals to reach, and lots of info here to explain this, take time to read up. You will get used to your CML, as will your family. The good thing is you will I am sure have a good long life ahead all things being as they usually are for cml’ers, all the best.

Oh boy, Andy, you said it! You captured beautifully in words exactly how I felt after my April 2017 diagnosis. Everyone around me gets colds, flu, sore throats, you name it -- but I get nothing, and I have -- gasp -- leukemia!! I have been so healthy since my diagnosis, it really "doesn't compute" that I have a serious illness. It is confounding. But we take our daily pill and go in for our checkups and blood work, and life goes on. Thank you so much for posting your reaction, and know that you are not alone. Justine.

G'day Andy,

A bit of history about me. My Sister was diagnosed with CML back in 1999. I helped, watched and nursed her everyday until she passed in 2003. At that stage I did not know I also had CML until the symptoms came to light a few years later so I was well versed in what happens and yes I was scared. When I went to my Doctor and then referred onto a major Hospital in my City. I live in Australia, at that stage they used to treat CML with Hygea which not only killed the leukemic cells but also wiped out all the good cells as well, so treatment was 2 weeks on and 2 weeks on. At that stage Gleevac was only in a scientific lab here however it was ready for testing, I was offered one of the 50 spots on a Clinical Trial, and was more than happy to be a Guinea pig. Bearing in mind when I first got diagnosed my oncologist informed me my spleen was the size of South America and by the time the Clinical Trial came up I was a whisker off the blasting stage now 10 years later I have been in remission for 7 years, I have not missed a day of work for the past 7 years and I have very little side effects (I had severe side effects, but they seemed to wane as time went on, yes cramps and fatigue are the main one but I take 500mgs of Curcumin, 1000mgs Magnesium and potassium daily) as well as Gleevac and a fantastic support group, for me life could not be better. For the past 2 years I have been going to the Hospital every 6 months with the next appointment in February, also over the past 2 years the dosage has been smaller and smaller and at the last appointment I was told I will come off it totally at the February appointment (my fingers crossed). One piece of advice I would give anyone with CML is you must learn to live with it before you can deal with it, not the other way around and everyone need to pull in the same direction. I hope my little note will help you and I sincerely hope it will help others as I am a private person and do not go on forums so this a first and more then likely will be the last. I sincerely wish you all the best on you journey and I am sure it will be a very successful one.

 

I would like to take this opportunity to THANK all the people that dedicate there lives to saving others, you people are the real heroes of this world.

Aroldite.

 

HI Andy.... welcome to this forum and website. We are a solely patient run group so we know exactly what you are experiencing - you are not alone! As Nigel has already said..... although you don't 'feel' ill, unfortunately, your diagnosis means that you are ill- and with a serious disease. However, the good (very) news is, since the advent of the TKI era which started for most in the early part of the previous decade (2000) the prognosis for most patients diagnosed in chronic phase CML is very good, and you have an extremely good chance of living out your normal lifespan. This is unprecedented for a serious disease like CML and we are all fortunate that this kind of leukaemia has been very well understood for many decades- in fact, it was so well understood that researchers were able to design targetted therapy which we all know now as TKI therapy. It is because of this class of drug that many of us are still here to tell the tale- which for some of us is a long and complex one!

I suggest you try to learn as much as you can about the disease and its history. It may help with your obvious shock at such a diagnosis, and may also help with the understandable confusion you - and your family - feel about your 'not being ill' but actually definitely being ill! If you have not already done so, go to our page called 'About CML'  which will help start you off on what will undoubtedly be 'a journey' and one which many of our members have been on. It may be good also to read some patient profiles/stories.... these can be found at the bottom of the homepage. Just click on the pictures.

If and when you have any questions then please ask... we exist to help others who like us are diagnosed with CML - many, like you, without warning. It's hard at first, but it does get better. 

Sandy

I was diagnosed on 14 October with WBC of 330 and, as you say, a spleen the size of America - It was so big it was sticking out the side!!.  

I was told that I'm at the severe stage of Chronic and was put on Dastinib.  Apart from bone pain I feel fine.  I struggle to get to grips with the fact that I've got a serious illness, but you really have to move onwards and upwards and be positive about life.  

I work with children so have taken a bit of time out from that until I get to the 3 month stage and my doc says that my bloods are back to normal.  Apart from that, I feel a bit of a fraud as I feel so well!!  I am worried about the flu epidemic across the UK, but that doesn't stop me doing anything.  This is my first post on this site, but i refer to the forum quite often to see how others are.

 

 

Hi all,

I haven’t posted for a long time but I would like to share my experience of living with CML without feeling ill. I was diagnosed 5 years ago at 57 rather by chance as I had no symptoms apart from bruising easily and night sweats (that I thought were due to the menopause) I was in chronic phase but in the high risk group. My response has always been sub-optimal and I still have not reached the magic 0.1% mark for my BCR-Abl PCR. I have been on Imatinib, Nilotinib, Bosutinib and now am on 100mg/day Dasatinib. I am fortunate that I can tolerate the TKIs fairly well. There have been side effect: bone pain with Imatinib, skin rash and hair thinning with Nilotinib, the dreaded diarrhoea with Bosutinib that never really cleared in the 2 years+ I was on it and now a touch of colitis linked to Dasatinib that doesn’t cause me any problems. All the side effects have been manageable and I haven’t missed a single day work because of CML. I hardly ever catch a cold and my general health is excellent. A couple of years ago I completed the Inca Trail in Peru, I have done several long distance walks in this country, been skiing and hiking in the mountains in Italy...etc. My consultant is very positive about my future; even with a PCR hovering around the 0.2% on the IS he told me repeatedly that I’m in a safe place and that my life expectancy is similar to any healthy person.

when I was first diagnosed I told all my friends and my boss at work - now I don’t even mention it because it seems almost irrelevant. I take my tablets religiously (I have never missed a dose) and attend the clinic every 3 months but apart from that  my life has not changed. I know all the ins and outs of CML, I’ve read lots of scientific paper and any other information I’ve found. I’m not in denial and I know that the situation could change, should I become resistant to Dasatinib. Nevertheless I don’t think myself as a sick person and enjoy life as much as I can.

best wishes to all

Luisa

 

Dear Luisa, 

Thank you for sharing. I have just started my treatment of Nilotinib today and I am not as strong as I was 7 years ago facing a breast cancer. Your experience gives me motivation. I fear the side effects  this medication may have. I forget, at times, how positive I normally am. I don't even know what stage my CML is at. I had a biopsy yesterday.

Your story helps me to remind me that we all adapt and like in the past I'll adjust too. I just hope the side effects won't be as bad as they could be.

Warm regards,

Sonica