On 2/22/2008
poppy/cath wrote:
Hi Jane! I have had MM for four years now, and noticed that you too are suffering from one of my main annoyances, namely the hot flushes! And you are living in England, where you are experiencing winter - so you shouldn't be having these hot flushes!! I'm in Australia - its summer - and I have these daily, sometimes 2-3 times a day. I have posted questions about this on this board and it seems to be a factor of MM, but most people feel that it is better during winter. There doesn't seem to be a way of controling this problem, just to carry a dry face washer to mop up your dripping head!
It sounds as though things are starting to move - fatigue, bone problems, etc. But don't worry about waiting a month - time is not that short! Once you have the results then decisions can be made about what form of treatment might be the best at this stage. Have you had anyone look into your bone pain/probems? I have found that the durogesic patches (Fentenal) work really well to control bone pain, just increasing until you reach a level that works for you. Pain is so individual, some people find 25mg is enough for them, others need lots more. But a lot of people a afraid to use the patches because they feel that they will be considered drug addicts, which is certainly not the case! You are in early stages and we are really fortunate that research is progressing very quickly with all sorts of new drug combinations being approved and working well -- its just a matter of finding what works best for you! While MM is still a 'terminal' illness, that doesn't necessarily mean days/weeks/months! As you can see from others who have responded - time can be calculated in years these days!! I personally believe that it won't be long before MM is considered a 'chronic' disease, much like diabetes. Hang in there - the 27th isn't so far away, then you will know what your choices really are. It doesn't pay to worry about what 'might' be, it just adds stress to an already stressful situation. Best wishes - and keep cheerful!! Cath
Hi Cath,
Thanks so much for your reply. The hot flushes are annoying, a few days ago I had a lovely relaxing bath and felt refreshed and an hour later I was again dripping with sweat and had to take a shower, its annoying feeling sweaty and dirty all the time. I am wondering if it might be early menopause, I sure hope so because that would be one less problem to deal with each month:-)
Today I have woken up with yet another infection, I have been having pain in my jaw right next to my ear so I went to the doctors today she said my ear is very red inside so I am now on yet another course of antibiotics. I feel generally ill today, achy legs and back, painful glands and face ache near my bad ear but never mind once the antibiotics kick in I shall be fine and we all have our off days.
I am obviously hoping that my results next week bring good news and that I still only have MGUS, but in my mind and my gut feeling tells me things may have changed, I sure hope my female intuition is wrong for once, but I will cross that bridge if and when I come to it. I am a positive person so I also believe that a cure is on its way for MM and I believe one day they will be able to prevent MGUS and Smouldering Myeloma from turning into full blown MM. Until then patients will continue the fight, and when and if my time comes I will fight too. Until then I refuse to be miserable, I am not wasting my time with that, I carry on as normal, allow myself the occasional off day and remain my cheerful old self.
How great it must be to live in Australia, its a country I would love to visit someday. You have the most wonderful animals and sealife and as an animal lover I would love to see them in the wild or in the bush as you would say. Summer seems a long time ago now, we are deep in winter here in the UK, its not too bad today its 13 degrees but yesterday it was only 2 degrees so its changeable here at present, even winter in Australia is quite pleasant so I have been told anyway.
Thanks again for the reply and I send you my best wishes from the UK.
Take care from Jane x