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I'm Special!

 

Hi, all

I discovered this week that I belong to the select 500 or so of us Brits honoured to join the CML club. I believe that's less people than get to join the New Year's Honours list from the Queen, so we really do seem to be a privileged few!

After a few days knowing only that I almost certainly had Leukaemia, but not the type or whether it was Acute or Chronic (which raised the stress level somewhat) I did open a bottle of champagne to celebrate the fact that it's Chronic, and the prognosis is a lot better than I would have thought - Leukaemia has a very bad press.

I'm joining the Spirit-2 clinical trial testing Imatinib vs Dasatinib as a first line option, and find out tomorrow which of the two drugs I'll get - a brief review of the forum suggests both have pros and cons on the side-effects front.

The hardest thing seems to be having to tell people - family, friends - and constantly remaining positive for all of them.

Glad to find a forum, and I'd be interested to hear from people for whom it's going well - these forums are of necessity always talking about the problems, because that's what people need help with, but I'm sure there are many people also happily taking one or other treatment, and lucky enough to be relatively free of both the CML and side-effects!

Rod

Dear Rod, 

Welcome to this forum. You are right, if you are unfortunate enough to be diagnosed with a leukaemia then CML is the one that has the best options for treatment and the chance to lead a 'normal' life after diagnosis and for the long term.

 

The last time the prevelance in England and Wales of people living with (or should it be inspite of) CML is approximately 2700. This figure taken from a NICE publication is sure to be an underestimation as this is a figure from 2003. So we know this is out of date. 

 

As for incidence.... the figures vary from 600 to 800 from the National Cancer Registries and the 530 for the whole of the UK from the HMRN.  So again the figures a currently not agreed and confusion reigns.

 

Generally, what is accepted is that it is a rare disease... or haematological neoplasm/malignancy.... with 1.5-2 patients per 100,000 population likely to be diagnosed in any one year.

So yes... no matter what the real firgures are- you (we) are special ;o) and doubly so because of the recent development of targeted therapies and the consequent change in prognisis (for the majority, this is now a normal life-span)

 

Good luck for tomorrows result for which of the two TKIs you have been randomised to be treated with. The difference between the two drugs (TKIs) are that one is the first generation 'game changer'- imatinib.... the other, dasatinib, is one of the 2nd generation that was developed to try to improve on that 'game changer'. 

But as you rightly say, more than 60% of CML patients do well on imatinib and have continued to do well over the long term.

Keep us updated and if you need any advice or further information then do not hesitate to ask.

 

You are so right about disease specific patient run forums..... they are an invaluable source of information, and for CML in particular we are currently spoilt for choice ;o) 

 

Once again...good luck for tomorrow.

Best wishes,

Sandy

Sorry to hear of your diagnosis. Im sure over time you will find this site very valuable. I'm 7 months diagnosed and on the spirt2 and I'm on 400mg imatinib and doing well. On a day to day basis I have no side effects and don't feel there is anything wrong with me. Initially on starting imatinib I had the leg cramps which didn't last too long and some nausea if I tried to eat a light breakfast! Now I've got it down to a t and can eat very little without feeling nauseated! I used a doset box as I would panic that I forgot to take it so that just reassures me as it's down the hatch in seconds!! Hope things go well tomorrow and keep us posted how you are doing.
Lynne x
I'm happy if you want to email on lynne.robertson4@btinternet.com

Hello Rod

Welcome to the club!  I was diagnosed over 2 years ago and am on Spirit 2, taking 400mg imatinib daily.  Like others, I felt a bit sick to begin with, and had bad leg cramps, but over time these have got much milder (I am still woken in the night from time to time, but walking around for a couple of minutes gets rid of them).  Otherwise the main problem I have is fatigue, which sometimes strikes without much warning and doesn't seem to be very closely related to what I've been doing.  Luckily I am retired, so I can have an hour on the sofa if necessary after lunch.

I think it's very good to be part of a clinical trial, as the doctors may take more interest in you (?), but the chief reason is that I want to help in research so that others may perhaps benefit in years to come.

Where are you being treated? I expect you will get to meet others with cml - it does make one feel a little less "special" but also there's a fellow feeling which is good.  I have found this site one of the most helpful things since diagnosis, there's so much information and I keep coming back to find out more.

Good luck

Olivia

Hi Rod,

What a great positive attitude for a first email, with every reason to be so. Welcome to our exclusive club. If that’s the right term to use !

I was diagnosed Sept 2011 so still early days, on Imatinib with usual leg cramps for few days after a week on meds, other than that I am one of the lucky ones, touch wood it continues - no side effects.

Read about your CML is my advise, I said I wouldn’t first of all, but within a few days as all looked so positive felt confident to do so. I also found video links on this site and YouTube excellent at answering questions and explaining allsorts, also giving a really positive view for the future for most. The work done by Sandy and David and all has moved the cause forward so my.   ndeekes@onetel.com  if needed   Nigel

Hi Rod

Lovely to see such a positive attitude. I am just about to have my first cancer-versary next week what a year it was. I was dx'd in Feb last year, panick, anger the whole why me etc phase happened which lasted about 2 days. I had a busy week going to various appointments and had the Bone marrow biopsy big Ouch. You mentioned about telling family and friends i have to say this was the hardest thing out of the whole process as i found i had to be strong for them and be positive telling them it will be fine although i was panicking myself. This has now worn of and to be honest no-one could tell that i have CML so in theory i didn't actually need to tell anyone.

The meds, i am on the trial and have been on Immatinib for nearly 12 months, had a few problems at the beginning leg cramps, sickness etc but they have defo worn of still have occassional leg cramps but nothing major. I am doing well on the meds and will have my annual tests next week in which i hope for a good result.

Knowledge, all i can advise is that look around this forum as it is a life saver, people always have an answer for your questions and seriously there is no daft question to ask.

Keep in touch and good luck with your journey

 

Ni x

An innocuous looking bottle of small white pills awaits me this evening after dinner. I think a glass of red wine is also called for to offer up a toast to those billions of myeloid cells which are going to die: thanks, guys, for being around and doing your best, but your time has come....

 

Thanks all for the messages

Hi Rod,

Good luck with the start of your long journey. I was very apprehensive  as you are when taking the first tablet after I was diagnosed in August 2010. You sound like you have the right attitude so there is no need to worry.

Like you, I am on the SPIRIT 2 Trial and have been selected for the Dasatinib arm of the trial. You may have one or two side effects but I'm sure you'll cope with them without too much of a problem and they will diminish over time. The main side effect I had at the beginning was puffy eyes. Try to drink a few more glasses of a water if this happens. Another minor problem is a few spots around the face which is a bit like acne................it .will take you back to your teenage years !!!

In general I feel great and try to do some sport each day to keep fit. (Squash /swim or running)

We are really fortunate to have this medication available , compared to 10 - 15 years ago.

Please let us know if you have any questions.

Dave M 

Hello Rod, welcome to the Club. I love the idea that it's more exclusive than the Honours List!!!! :-)

Know that there are many of us on here who have been around for some years now co-habiting with Leukie, and doing very nicely thank you! I've had CML for over 5 years now, and there are many more who have been here for much longer. I live a normal life, and hold down a full time job. My Leukie levels are now very very low, and are continuing to drop slowly away on imatinib 600mg. Good! :-)  I do have side effects - cramps and eye bleeds mostly at the moment [they seem to vary over time], but as my consultant says - side effects are her challenge to try and sort out!

As you rightly say, it is difficult telling family and friends. How much you say is up to you. Some folk are very quiet about it, some are very open. I went down the very open route and haven't regretted it, people now regard CML as just part of me. Which it is, in the same way that having asthma is also part of me. 

Take care. This is a great forum, whatever questions you may have, do raise them - there will always be someone who can help.

Janet

Hi Rod,

well done. I would advise that you take it slowly over the next few weeks and ease in to life on a TKI. Water is your friend from now on... plenty of it. 

 

Remember your liver is the organ that metabolises dasatinib (and most other substances) so look after it.

 

Watching the white count fall is gratifying. Don't feel sorry for them, they were never concerned with your

wellbeing  ;o)

Best wishes,

Sandy

Hi Rod,

 

The next club to join is the 0% club, which should come up in about 18 months.

I'm seven years post Dx and still on 600mg Imatinib.

 

Always happy to chat with anyone cerries@aol.com

 

Terry

Hello Rod

Welcome.  My own experience may be helpful. Diagnosed 2 1/2 years ago at 42. Big shock and telling people was hard, as was reassuring people that the outlook was pretty good. That's difficult because one has no real idea of how it will pan out to begin with and living with that uncertainty for the first few months, at least, is not easy.  But yes most people do do well, so it's great that you're so positive.

Of course people do respond at different speeds, and have different levels of side effects, as you've seen from the forum already.  Sharing tips and providing support/help is very much part of it.  For myself, I know that I was lucky that I reached CMR in about 6 months (on imatinib) - that's very quick and longer is the norm so don't use it as a benchmark. Though the aim now is indeed to try to get the best response possible as fast as possible.  Lots of work in various directions is going on to that end and massive progress has been made. 

My side effects are relatively minor but they are there. Mainly acid reflux, "gastro intestinal turbulence" (a fabulous expression to cover a multitude of symptoms!), cramps and chills. But in my case all are manageable, fortunately.

CML is and will always be something I have to live with, which I and my family are still working out how to deal with completely, but it has also made me appreciate life far more than I did, and get more out of it in lots of ways.  Bizarrely perhaps, it has not all been bad.

Welcome to the club. I'm also quite new  just over 4 months now ( dx 14th Oct) and also on the SPIRIT Trail - on the good old Glivec. I can't tell you where the first few weeks went for me when I was first diagnosed but I can say as soon as I found this forum- everything started to become clearer . They're a great bunch on here ;)) and thanks to Sandy and co, everything you need to know about CML is here. As others say I'd recommend looking at the videos and FAQs too. Yes the hardest thing I found was telling people as you're still learning about it yourself . However my family and partner have taken it on board and its part of normal life now. My partner was the one reading up about it before I had the confidence to -now I'm always reading up on it! I have to say I feel so much better now I'm on the tablets, more energy  and fortunately no side effects except the odd bit of hand and foot cramp once in a while. I can't just blame it on the tablets tho as I used to get it before now and again . Yes you ( we) are special and so fortunate that we live in an era to have this treatment and expertise. best wishes Jo.

Hi rod all the best for the future you have the right attitude .I was diagnosed 14th December 2009 at Wolverhampton hospital ,picked up by a routaine blood test a complete fluke no symptoms, know in full molecular respons..this is my first comment on this site hope to speak to you again.

Regards tony Morgan.

Hi and welcome to this exclusive club :) I am sure you will find lots of support and information here. I was dx in August 2010 and went on the Spirit 2 trial and like you was randomised to dasatinib. I generally tolerated this well, although all my counts did crash after the 1st month. (so I had a break, a few transfusions and then went  on again)...Generally the drug worked well for me with few side effects - and I hope it does for you too. However, I'm in an even more exclusive club - the T315i mutation club :) so this meant that the dasatinib couldn't control my cml and I ended up having a transplant last August. So an eventful 18mths. But for most people the different drugs work very well, so keep strong and give yourself time to come to terms with it all.

Best wishes

Joanna

I just wanted to add 'hello' and hope you are doing well. I was dx march 2010 ( year anniversary next weekend :-(
I am on Nilotonib and doing well, I have mostly good days, the odd bad one, but life is still very normal with part time work, looking after two children and my husband back to working long hours ( not sure I like that bit!)
I also want to add that this site is amazing, I really feel I can ask anything and usually someone can help, I couldn't cope without it.
Best of luck with everything and I look forward to reading your future posts!
Emma x

Rod,

I was diagnosed in December 1993 and remember well the consultant explaining the options and the potential 5 year to live scenario - I'm very pleased to say that things have changed completely in the intervening years.  The consultant's advice was to hold fire on transplant for as long as possible as the research was advancing very fast - he was so right.  I did have a full BMT in 97 which relapsed but an alternaive was on the horizon and in 2000 I started on Glivec on one of the early trials.  Since then my relapsed BMT has reversed and I am in molecular remission and have been for many years.

You are correct in that CML is one of the few cancers that is very controllable but take care in your treatment whichever you get and take things slowly and I'm sure you will get back to a normal life which is where I am at now.

Best luck for your future treatment and yes, this site is excellent although I am only an infrequent visitor these days!

 

Phil