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Evening everyone,

If you're reading this thank you for taking the time out, I signed up on here when i first got diagnosed and have had a look through all the threads - although its not particularly a group i wanted to join everyone seems so welcoming which is very reassuring. I'm a 20 year old from London and was diagnosed with CML about 4 weeks ago, and after a load of blood tests and a not so fun bone marrow biopsy I've been given Imatinib 400Mg. I originally went to the doctors to have a blood test because i was feeling tired all the time, with the assumption it was some sort of vitamin deficiency, which was something i had last year with the same symptoms. But as you've all experienced, the results came back different as a shock and now I'm here. I'm a bit nervous as to what to expect from the treatment, and with it being my 21st birthday this year i had big plans for myself and feel gutted that i might not be able to do what i originally wanted to.

If anyone has any words of advice or can give me a heads up for the start of my journey with CML will be much appreciated :)

Thank you again

Alessio

Hi Allesio,

Welcome to our little club ... none of us wanted to be here, but we're all here for each other :)

Only 4 weeks ago - wow. There'll be a lot going through your mind at the moment. It's a real rollercoaster for the first few months, at very least. Did you notice anything other than being very tired? I know when I was first diagnosed a lot of health problems I'd been having quickly made sense.

I don't think you need to be overly worried about not being able to do things you originally though you could do. The vast majority of CML patients go on to have an excellent response to treatment and live very normal lives. There are exceptions to that, but they are a small (but very important) minority. It takes a while for you to feel physically better, and the mental side of things shouldn't be underestimated but you have every reason to expect that you can do everything you planned.

The main bit of advice I can offer you right now is to learn as much as you possible can about CML. The videos here are great (check out the "resources" tab at the top of the page), and there are books you can read such as "The Philadelphia Chromosome" to help you understand as much as you can. When you know as much as you can, you can have much better conversations with your doctors and people here too. 

Do you mind me asking where you're being treated? I'm central London too and treated at Barts Hospital. You might find patients here in the same clinic group as you.

We're all here for you, to help you understand what's going on inside your body and to help you process that in your head. Each and every one of us have been in your shoes so you can ask pretty much any question you have, and I'm pretty sure someone else will have had experience to help you.

David.

Hi David,

Thank you for your reassuring words :)

Yes it has been for the past 4 weeks and I am prepared for it to be for the next few months. When I initially went to the doctors the main reason was due to tiredness as I'd come home from work and feel exhausted, to the point where I'd have dinner and have to go straight to bed afterwards. But another symptom I had was a dull ache in my bones, not necessarily a painful ache - more a tired ache where I felt like i just needed to rest my body. This was pretty much the same symptoms I had about a year ago when i went to the doctors, but that turned out to be a Vitamin D deficiency which I was prescribed tablets for and sorted out the problem in about 2 months.

Great thank you, yes I've seen that book mentioned here by quite a few people and they've said what a great read it is so i will definitely have a look into buying it.

Of course, I'm currently at Kings College hospital. I know it has such a great reputation and I'm feeling very comfortable there, the staff and doctors have gone above and beyond so far.

Thank you again David its very much appreciated.

Alessio.

So 21st birthday approaching and advice wanted.

Get a couple of early nights in before the party.  Don't get too off your face or the day after will be hell!   Don't do anything that you'll be ashamed of or regret in later life :)

I thought David gave you the sensible answer so I'd get straight to the point and deal with the important things  ;)

oh and hello and welcome to the club no-one wants to join from an old fart who still remembers a great 21st birthday.   Coincidentally I celebrate 21 years since my diagnosis this week. 
 

Congratulations Darley on your 21 year milestone.  That is some anniversary, given you were diagnosed in the pre imatinib era!

The next one for me will be this October (13th) which will be 13 years post SCT (lucky for some).... then again in December (4th) which will be 17 years since my diagnosis in late chronic/accelerated phase. 

Sandy

Welcome Alessio,

David has reassured you already, so I can only underline what both he and Darley have said, although it is pretty 'unfair' that you are having to deal with all this at such a young age. If you need any advice or further support as you go along with your treatment then do not hesitate to ask on this forum. There are younger people like you diagnosed with CML ... but not that many. It's a pretty rare disease, even rarer in younger people and ultra rare in children. 

I see you are being treated at Kings... Joanna, the CML clinical nurse specialist is really good but she is on maternity leave for a few more months- however I was told her cover is also good. CNS' are really good to talk with as they often take more time than doctors to help you understand not only the clinical aspects of both the disease and TKI treatments but also how you might manage side effects etc.  

There are a few members of this forum who attend Kings so might have some input too.

Meanwhile, try to take in as much as you can about CML and its treatments as you can, with he knowledge tat the majority (over 90%) do respond to TKI therapies. 

Sandy

 

Haha so I just need to be sensible then!

Thank you for your words Darley, and congratulations also on your 21 year milestone that is a great achievement.

Alessio

Hi Sandy,

Thank you - yes from what my doctor told me 1 in 150,000 are diagnosed each year; with it affecting mainly older people. One thing I would like to know is what the situation is with alcohol? I'm not a heavy drinker myself but when I do go out I do like to have a few drinks. My doctor advised strictly no alcohol within the first 3 months, but as the years pass and if hopefully I'm in remission (but still taking medication) am I allowed to have a more than just a couple of drinks? If you could share with me your experiences or some advice it would be much appreciated.

Yes I regularly speak to Geke who i'm assuming may be her cover as there are a couple of specialist nurses - they've made me feel very valued as a patient and call me just to see how i'm getting on. Its my 4th day taking Imatinib and fortunately i haven't had much side affects yet, just a slight bit of nausea after i take the tablet. I'm not sure whether it might take a while for it to settle in my system and for the side affects to properly start to take affect on me.

I took David's advice and purchased The Philadelphia Chromosome which i'm going to start reading tonight - i'm hoping this will give me more of an insight to the history of the disease and all the research thats gone into it.

Thanks again, Alessio.

Imatanib, like any hardcore drug can be hard on the liver.  Alcohol can be hard on the liver.

I think it's prudent to be sensible and follow your doctor's orders.  Let everything settle down.  Make sure you drink plenty of fluids to keep everything flushed through and then if you're o.k. follow the principle of "merriness in moderation".

It's a one I wished I'd stuck to when I was young and foolish.

Hi Darley,

Thank you for that, it's nice to hear these bits of advice from someone who is going through the same thing - I'll be making sure I follow my doctors orders! :)

Best wishes, Alessio.

Thanks Sandy,

I think we've both done well despite the odds and considering when we first joined the CML club!

My understanding from my consultant is that I'm right up there in the "longest surivivors" club.   For sure I know my Consultants have been using my case as a bit of a ground breaker as they've networked with colleagues and presented protocol and findings with their colleagues around the world.

I remember going to a big event at the Royal Armories Museum, Leeds to commemorate the 25th anniversary of opening of the first bone marrow transplant in Europe.   My consultant at that time, David Barnard, was the guy who'd opened it and the event also marked his retirement.    All close relatives of people who had been through the unit, & all surviving patients were invited.   Suffice it to say I met a lot of staff and relatives and quite a few suriving patients about 4 years post transplant and no one else at all around my time.   There was a point in the night when baloons were released for those who had died.  There were a lot of balloons!

Such a different story now.  Thankfully we hung in long enough and made it to see the TKI's come in.   Seems so long now since I was asked if I'd go on trial for "this new drug called glyvec"

For sure TKI's have been a game changer.

In truth I've not been through the same thing.   I was diagnosed and first commenced treatment in the days when there were fewer treatment options and life quality and expectancy were both going to be hugely affected.

That possibly gives me a different perspective.   For sure I know I'm lucky to be here and really lucky that the cancer I had was one that was right at the forefront of medical research and huge developments in treatment. 

I still feel "it's not fair" that anyone should ever have to get cancer.  I'm gutted every time I hear that a child gets such diagnosis.  But I've often said that IF you absolutely have to have one then I'd pick this one.   EVEN having gone through everything in the pre TKI days when I was seriously ill.  

My treatment by my consultants throughout has been second to none.   I trust them implicitly.  They've more than proven I'm right to put my total faith in them.   On my part, I'll do everything possible that I need to do to stay healthy.  I'm one of those who is "ultra compliant".  If my consultant to tell me to stand on my head and stick my finger up my backside because it will keep CML from making me ill, then frankly I'd do it!

Incidentally, joking about drinking aside, I no longer drink alcohol at all.   The process of my treatment with cytotoxic chemo and total body irradiation and a matched unrelated bone marrow transplant kind of took it's toll.   It left me with no sense of taste and smell but bizarrely with some things that when I tasted them just made me shudder.   Alcohol was in that category.   So I went from thoroughly enjoying my malt whiskey, good wine and a good pint to not even being able to stand a bit of brandy in a Christmas Cake! 

My partner jokes that if there's a good thing to come out of cancer, it's that she got a permanent taxi service and we no longer have to negotiate who is going to drive when we're going out for a drink!

My sense of taste and smell started to return a few months ago (after nearly 20 years!) and this year I tried a sample sip of champagne, red wine and beer.   yuck!   It's not doing it for me any more!  

I say if I never have another drink again I had more than my fair share.   Surprisingly it's not something I even miss.

Hi Alessio

My son was diagnosed with CML when he was 20 and at university. I've written something about this on a recent thread by Jade called "Hi"

As far as I can judge (because he's not likely to confide too much detail to his old Mum) he has cut back on the amount of alcohol he drinks and is careful, to some extent, about getting enough sleep etc. but can still party with the best of them!. He is living a very normal life for a mid- 20s man in London and hasn't had to change any of his plans about his life, travel, work etc. I hope you will be the same!

Hi Elaine,

Thanks you thats very reassuring words and I'm glad to hear your son is getting on well! I can imagine being at Uni as well it must have been quite difficult at first but good to hear he's still able to enjoy himself!

Thank you again, Alessio.

Hey Alessio,

i was dxed last October and been on dasanitib 100mg until today. Sometimes u will have ups and downs in your life but don't let that get to you. I still live my life just like before, just not drinking much. I was heavy binge drinker, I drink atleast weekly once and would like to get drunk each time I drink. Now I rarely drink, one glass or two when there is Occassion. I'm 34 yrs this year.

you just don't wanna have complications on liver by taking alcohol and tki at the same time. You wanna live long healthy with your loved ones ..trust me...

 

stay positive and and stay active. I'm kinda new to this as well and we go thru this journey together okay mate?

cheers,

stephen

perth,Australia