I'm new to this forum but have found it very helpful browsing through previous threads. It's not me but my husband who has CML - he was diagnosed in September last year - totally out of the blue though it explains why he'd felt so tired for so long. He was very lucky to start on Glivac after a few months on hydroxyurea and all his recent blood tests have been encouraging. We are waiting at the moment for the results of a recent bone scrape. I've got various questions that I couldn't find much mention of in previous postings and if anyone could take the time to respond I'd be very grateful. The first question is about work - John was made redundant the year before he was diagnosed and since then we have run our own business - with fortunes very up and down as they can be when you are self-employed and given that we lost our house 18 months ago and also have four children (!) - things are getting a bit uncomfortable and John has a possible chance of taking an employed post - I think his confidence has been knocked a lot by his diagnosis, not surprisingly and he feels anxious about whether he can cope with this - I know no-one can answer the question for us as it is individual but is it realistic to expect to be pretty much how you were before getting ill or are there inevitable changes? Secondly the only side-effect of the Glivac seems to be diarrhoea. Most of the time this is manageable but on one occasion it was almost uncontrollable (this is when the idea of being in an employed position becomes worrying for John I think) - he knows he has to take his tablet with his largest meal of the day and he also feels that this needs to include meat in order for it to have the least effect. Does anyone have any tips or experience of managing this particular problem? Lastly does anyone know anything about what the situation is if you move out of your original area - the local PCT needed to authorise the prescription of Glivac I know as it is so expensive - if we moved to another area of the country would we still be certain John could get it? Also it has been a long-held dream (probably unlikely to be fulfilled) that one day we might move to France - I feel we probably have to abandon this idea now but does anyone know what the specific regulations are?
I've found it so helpful as I said reading previous comments. If anyone is able to respond to any of my queries I'd be very grateful. Sorry this is a bit long!
You are here
work, diarrhoea and moving out of your original area
Dear Lynn,
I haven't posted here for a while, but until recently this site was the only contact I had with other people who have CML. I'm sure you will both get great help and support here from many knowledgeable & experienced people. I thought it would help you to know that my story is similar to yours in many ways. I was diagnosed with CML in September 2003. I was very ill, and Glivec had just been approved as a front line treatment. I now know that I was very lucky, because this drug has revolutionised the treatment of CML. There are also new drugs being trialed at this time, others on the site know much more about them than I do. Things will settle down, so please be optimistic about the future.
Finding out about the illness, treatment etc. works for me. Knowledge is power. Hopefully it will work for you too. Anyway, the most important thing I want to say is if you are considering changing everything, such as the move to France, PLEASE put the brakes on, and seek some independent support for you as a family. We moved to another county 10 months after my diagnosis
with a view to a better quality of life, and left behind everything familiar to us, family, friends, memories, and I could go on. It may work for some, but didn't for us and put a big strain on the whole family.
On the Diarrhoea front, I used to get it quite bad on 400mg Glivec, but on 600mg, I get it even worse. My Consultant just monitors me, but can't suggest anything to combat it. I am now thinking of taking dietary advice.
Linked in to what I said about moving, we are moving back HOME next month. I've got a great Consultant there so hopefully he will be able to help.
I could tell you loads more, so if I can help you in any way I will. My private email address is phil.poole.poole@btinternet.com
Very best wishes,
Phil.
PS Don't rush into anything!!!
Dear Phil
Thanks so much for taking the time to read my email - just a quick reply right now but it is so good to hear from someone in a similar (in some ways) situation - very interesting to hear about your experience of living in France - it is only a distant idea for us and definitely not something we would do in the near future - the reason I wanted to ask about the availability and possibility of obtaining the drugs in France is that it seems so many things have changed and in some ways (perhaps needlessly so) our dreams have had to change. Knowing that it was possible to obtain the drug in France (even if we never did actually move there) at least would mean we could keep that dream. I hope that makes sense. Presumably you have managed to keep getting Glivec - do you mind me asking how that has worked out - is it funded in France or do you get it through your English consulant. Sorry to hear you have had problems with diarrhoea too, I know it is one of the things that John finds most difficult - whilst also feeling very lucky to have the drug at all.
Anyway I am sure I will be in touch again and good luck with the move back to England.
Hi Lynn,
Sorry, I can't help you with the big D, but I posted a few weeks ago asking if anyone had ever moved to a new area in the UK whilst on Glivec. There were no replies from anyone who actually had, so I assume thats a new experience for someone. We did stay in Spain for a while, pre CML and Ted was diagnosed whilst there and we were strongly advised to "go home" for treatment. This was before the Glivec era,and we were on holiday, but later, when we wondered about going to live there whilst on Glivec, we enquired of the folks who issued the E111(now the EHIC)and the E106 etc.(There are a lot of forms). There were many phone calls and correspondence, leaving us not at all convinced that Glivec would be funded because of it's high cost until Ted was 65 and an OAP. Then, he would get it with no problems at all! If you are contemplating this route, I would be delighted to know that the situation had changed in the last few years, or we misunderstood - but please make sure that you get it in writing from Newcastle that the full cost of Glivec will be covered in France or wherever. There is also a time limit for using the NHS and being abroad.
Hope someone else can chime in on this ?
All the Best
Bee
Diana G
Not a glamorous subject with which to make my Forum debut, but here goes! I was diagnosed with CML in October and was put on 400mg Glivec a day in December. Problems in the bowel department at first, but now not half so bad, so maybe time helps. I start the day with a huge helping of muesli, then a handful of Glivec (now taking my four-a-day 100mg tablets all in one go), half a pint of water and a couple of squares of organic dark chocolate to pep me up. I have virtually given up dairy products and meat since the diagnosis and this, I feel, has helped.
Hope this is of some use,
With very best wishes,
Diana G
Hi Diana
I just saw that you are taking your glivec with some dark choccie - the instrustions on my carton say specifically not to take with caffeine. I asked why and was told that glivec is hard on the stomach, sometimes leading to the runs, and caffeine can make this particular side effect worse. Just a thought.
You and I were diagnosed very close together - I got my diagnosis in September last year. All the best.
Janet
Diana G
Hi, Janet - Thank you for your choccie observation: you have unwittingly shamed me into admitting that I haven't read the sinister small print that accompanies my boxes of Glivec. The coward within me is too scared to do so, while my 'hypochondriac self' knows that whatever horrors the small print warns about, I shall immediately develop in shedloads. Meanwhile, the 'foolhardy me' continues to swill down the pills with whatever is handy (it was blackberry wine the other day), rounding off the ritual with a bit of soul food. I shall amend my bad habit forthwith. But why is it that a mint humbug or a handful of wine gums post-Glivec doesn't have the same allure?!
But seriously, thanks again for the tip. I yearn for the willpower to decaffeinate myself completely but alas, a square or two of Green & Blacks or a doppio macchiato in Costa is almost worth a hasty sprint to the nearest public conveniences.
Meanwhile, I send good luck, good health, and my very best wishes to you.
Diana
Hi Diane & Janet,
I am aware of at least one hospital which labels Glivec with this warning about avoiding caffeine - that's the hospital where my wife attends.
I do not know why that is, I am NOT aware of any potential interaction of any significance.
In fact when Anne received her first supply of Glivec in 2003, I noted the warning on the label and actually spoke to Novartis (Manufacturere of Glivec) about this. The contact at Novartis also was unable to confirm to me that there would be a problem with caffeine consumption with Glivec.
So Anne happily drinks coffee / tea, and occasionally eats chocolate with no apparent problems.
The main issue with drugs/ contents of food interacting with Glivec relates to the way the liver breaks down the Glivec - the enzymes involved can be inhibited by other substances. There are a few drugs to which this applies, the only food / drink that may be implicated that I am aware of is grapefruit / grapefruit juice.
I hope that this helps
Paul