8 days glrevac taking endone bone pain bad indigestion and feeling quite depressed but apart from that,ok.best antidepressant pain reliever anyone else knows of or takes?am grateful and still csnnot quite believe I havr this illness and its weird how different people respond...anyway thank you for listening
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Hi Tanya. Sorry to hear about your diagnosis. You have found a place which helped all of us deal with where you have been.
On pain I used paracetomol to deal with the bone pain after starting glivec. I took it for a couple of weeks and it was OK, but it does put a load on your liver which is already dealing with the glivec. Ibuprofen is an alternative but can cause tummy issues. Different things work for different people I think - you need to see what works for you.
On the psychological side start with the Living tab on the top - read all the recently diagnosed section and it will give you a lot of information. I think we would all agree that one of the best ways of dealing with CML is to understand it and know about the treatment. I and others now understand this better than many GPs. I'd also suggest getting a notebook and writing down all your results. (Or use a Notes section of a Smartphone these days I guess) As you think of questions note them down and take your notes to your appointments at the hospital. Let the forum know your results and there will more than likely be someone who has been in the same place as you find yourself.
While you have been diagnosed with a nasty blood cancer, and need to take the treatment seriously, most people nowadays who get this diagnosis are likely to have a normal life expectancy.
HI Tanya
get your GP to prescribe Omeprazole for the indigestion - this is a common side effect and Omeprazole is OK to take with Imatinib. I've been taking ti now for over a year and it has sorted the indigestion.
Best
Chrissie
One of my CML consultants suggested low dose omeprazole for reflux/irritation which I suffered from right from the start on imatinib. Took it for 4 years without problems and it worked a treat. I think it's horses for courses - omeprazole works in a different way from ranitidine and for some (e.g. me) it's more effective.
A brief update on my indigestion/hearburn journey.. A couple of weeks ago I went to my GP as my indigestion had returned (I've had this for ages, pre and post imatinib - perversely perhaps it was only during my imatinib time - when I went on omeprazole - that it went away: prior to that it had been getting worse). He referred me for an endoscopy, which I had yesterday, as he wanted to make sure that there was nothing serious going on that a drug would mask.
This revealed nothing major but there is chronic inflammation of the esophagus and some early damage to my stomach probably caused by excessive acid secretion. Fits with all my symptoms. Nothing that can't be dealt with on medication, though. Bottom line: back on omeprazole as this is the best thing for that presentation and it should have a preventative effect for various things that long term heartburn/esophagitis can lead to.
Happy with this as my reflux was a problem before imatinib and now I know I can resolve it.
Hi there.
You might be interested in this thread from a couple of years back.
https://www.cmlsupport.org.uk/thread/10405/gord-gerd-reflux-and-nissen-f...
I had bad reflux, and because I was taking dasatinib omeprazole was a poor option. Also, in younger patients habitual omeprazole isn't great - particularly on your bones. It can cause problems later in life.
So I went with a surgical route. The thread linked above describes my experience, and it continues to work very well. It fixes the problem at source, rather than masking it
David.
Hi Sandy - yes, tested at the time of the endoscopy and negative. I think this must be routine because they never mentioned it before the procedure but it's there on the results.
All docs I've seen - including recent GI specialist - clear and consistent that omeprazole the best option for me and unconcerned about long term use at low dosage, other than to make sure nothing untoward is being masked, hence endoscopy. All my blood results - liver, kidney, bone function etc - have been normal since reaching CHR despite long term omeprazole use. It's obviously a personal decision but I don't like the idea of surgery that is not entirely necessary (my father had the op, which is not without risk, and it wasn't a complete success for him). It also may not work depending on the cause of the problem (it's never been suggested as an option for my presentation). I know others prefer not to be on long term medication, especially if it's more than one thing, which is completely understandable. However, I think it's good to be aware of all the options.
It's certainly true that omeprazole (or indeed any other "anti acid" therapy eg ranitidine) is contra indicated with dasatinib and I think nilotinib because those require an acid environment to work. Imatinib is different.
while mentioning bones - as a runner who has had a minor (and fully recovered) bone injury (small stress "fracture"/bone reaction caused by over exertion), one thing I am now doing (on advice) is taking vitamin D supplements from roughly October to April. Apparently we in the UK are (probably) all vitamin D deficient during that period at least (unless you go on lots of winter sun breaks..). It may not matter unless you are very active but I have been led to believe our sportsmen take these supplements now. Not saying I'm one of those, of course...
Best to all
Richard
I, too, am taking Vit D3 supplement. My blood test for July 2016 showed my Vit D levels were very low - no wonder I broke my arm, rib and a spinal vertebra all in the space of 2 years. I was diagnosed with osteoporosis back in April so have the Vit D/Calcium supplements + stuff I have to take once a week standing upright. Heigh ho - the joys of getting older. i did ask my haem if a TKI could cause osteoporosis and he did some research and found Imatinib is actually being considered as treatment for this - so it's not that that caused the bone problem.
My Vit D levels are normal now.
Best
Chrissie
hey there
I started getting indigestion after month 6, I find that diet has a big impact. Normal bread is likely to give me indigestion - rye and other "german" type breads that dont rise are much better. Any quantity of alcohol gives me indigestion but I dont imagine thats a factor for you just now.
As the other people have said proton pump inhibtors (like omoprazole) will be helpful, esp if its only occasional, however if you are having it everyday then its time to consider diet changes. Experiment and see what works for you....less spice, less bread, less meat, no booze and more plant based helps me a lot to avoid the need to use the anti acids meds.
Note: Rennies and other OTC antacids are not recommended as they can interfere with the absorbtion of the TKI