[margaretaParticipant]

I am a 66 year old diagnosed with multiple myeloma in February this year. This came as a complete shock to the system. I live in N.Ireland and am attending Craigavon Hospital for chemo. I am on the waiting list for stem cell transplant later in the year. Is there anyone from this area undergoing similar treatment? I am still trying to come to terms with the diagnosis and finding it difficult. Any advice would be greatly appreciated.

[iainf365Participant]

Hi Anne. Sorry to hear about your diagnosis. I’m not in N. Ireland but all of us with a Myeloma diagnosis understand how you feel. I’m 69 and was diagnosed in June last year. It brings with it a range of feelings and emotions, and you worry about what it might mean for family. But I took the view that there’s nothing I can do to change this and you have to accept that it’s now part of your life. But it’s not a death sentence and you now have to adjust to living differently. Don’t allow it to hide in a dark corner and mock you. Talk to friends about it and you’ll realise, as they will, that you are still the same person you always were.

Hospitals were never part of my life; now they are. I had 5 cycles of chemo and just before Christmas all my blood readings were back to normal. I just got home two weeks ago following a stem cell transplant. It all went very well and while they prepare you for every possible outcome, I never even had a mouth ulcer. That said, I felt pretty wrung-out at times. Treating Myeloma is an exceptionally well-tried and tested procedure and you have to allow the medics to do what’s best for you. I’m so impressed by the meticulous planning and care that went into my treatment. Life will be different and there will be a few bumps along the way, but we still have a future. We’re just on a different path to the one we had expected – but life still has a purpose.

Best regards,

Iain

[gcoulterParticipant]

Hi

There’s not much I could add to Ians advice other than to give you a local perspective.
My wife has been attending Craigavon for almost 5 years, initially for monitoring, then treatment, then back to monitoring. We can’t praise the staff highly enough. They’ve been brilliant.
She had a stem cell transplant over 2 years ago in Belfast, again all the staff were great.
As Ian has said treating Myeloma is well tried and tested, and if you are feeling any side effects let the staff know, they can usually do something to help, just don’t accept it.
You’ll read plenty about the stem cell transplant, and it can be tough, but you’ll recover and be able to get on with your life again fairly quickly, which is what my wife has done.
Life has been different in a multitude of different ways, the one thing Myeloma has done for us, is to push us to do things which we probably would never have got round to do otherwise.

Good Luck

Graham

[margaretaParticipant]

Hi Ian and Graham
Thank you both for replying. As you know it’s not good news to get, but you both have given me hope and maybe there is light at the end of the tunnel. I was not looking forward to the stem cell transplant so it was good to hear it wasn’t as bad as thought. I hope I get through it without many complications. It is nice to get in contact with someone who has had the same experience and hopefully things will work out for me. Is there any advice you can offer me as regards symptoms while on chemo as I suffer from pins and needles in both my feet and my eyes feel sore and I keep blinking a lot. I told my consultant and he assured me the pins and needles were due to my treatment.
Again thank you for getting in touch.
Anne

[iainf365Participant]

Hi Anne. I had the pins and needles sensation and it’s actually a sign of peripheral neuropathy. In other words nerve damage. Fortunately it was very mild in my fingers but by the end of cycle 5 my toes, balls of my feet and one of my heels were fairly numb – and still are. But it doesn’t affect my walking or mobility.
My biggest issue on chemo, by cycle 4 and 5 was the effect of coming off the 4 days of Dexamethosone. Day 5 was fine but 6 and 7 just left me exhausted. Couldn’t do anything much these two days. One of the other drugs affected my eyesight – probably Bortezomib. My mid to distant sight got better and my near vision was more blurred. But that corrected itself once off chemo.
Things to look out for during the transplant and preceding chemo. The hospital I was in provided fruit flavoured Ice Poles to suck while the chemo was infused. I bit off 1/2 inch chunks and moved these around my mouth for the full half-hour. Keeping the mouth cool is important. For two weeks my mouth was slightly inflamed but I religiously did the mouthwashes – every four hours, night and day. I hated it but did it. I avoided hot drinks, hot food, hard biscuits and anything that required a lot of chewing, just to protect my mouth. I occasionally sucked ice cubes and made sure I had plenty of flavoured water to drink.
However, the whole thing is very tiring and I lacked the energy to read, watch TV or even listen to a radio play. For 5 days I did little but listen to music and rest. Mild nausea was an issue but there are pills for that. After that the energy returns although I was quite tired again by late afternoon. But, we are all different and your issues may be different to mine.
Hope it all goes well. You’ll probably feel rough for a couple of weeks but it’s certainly worth doing.

Iain

[gcoulterParticipant]

Hi

As Iain said the pins and needles are peripheral neuropathy, a normal side effect of the thalidomide. My wife had this, and like Iain her feet became a bit numb in places. It eased slowly but surely after the initial treatment. Her dosage was reduced a bit to ease this, but the consultant pointed out only because the treatment was going well. Those blasted steriods were a real bugger, up, down and around!

My wife had a very similar experience during her stem cell transplant as Iain, a couple of tough days in the middle, then gradually gaining her energy back. This bit takes time but as you improve a bit every day it certainly makes you feel better knowing you’re heading in the right direction, and everything the nurses have been telling you is true. Let them know how you’re feeling, as we came to realise “they’ve probably got a pill for that”!

We tried to take the perspective that in the greater scheme of things, this will be “just” a tough few months of our lives, but once we’re through it we’ll be able to press the go button again and get on with the rest of our lives. Looking back, at times it was hard to maintain this perspective when you’re in the midst of it, but two and a half years later, I can safely say we’ve made up for that “time-out”!

I see there’s a Myleoma Info day in Belfast in November, you should consider going to it. We’ve went a couple of times and it particularly helped the first year talking to other patients and hearing the success stories. Forums like this are brilliant and were really helpful for us. However they tend to have posts relating to issues people are having. After treatment many people want to leave Myeloma behind them as much as they can, so you won’t, or will find it difficult to read about how people are getting on with their lives post treatment.

Graham

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