[gcoulterParticipant]

Ann

Thanks for the reply, I had looked for an info sheet but the only one I found seemed to be for maintenance treatment not for relapse. I’ve had a look again and found a relapse info sheet.
However it doesn’t really cover everything, but we’ve an appointment with our consultant next week where we’ll find out more, like what has to be taken at home and does this mean no second stem cell transplant.

Thanks again,

Graham

[gcoulterParticipant]

Hi

Rather than add to this topic I’ve just started a new one on Daratumumab, to make it stand out for others who will have the same question.
I’d like to know what is involved as it’s a relatively new treatment regime.
I’m hoping someone on here will reply to it.

Thanks,

Graham

[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

[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

[gcoulterParticipant]

Agree with everything posted by Mash. My wife had a STC and around day 11 it was really hard to see her curled up in bed and not eating. But the doctors and nurses kept reassuring us and she soon bounced back as they said she would. Two years later she hasn’t looked back.

[gcoulterParticipant]

Hi

My wife is 18 months past her stem cell treatment and we’re really glad she went through it.
She was 51 at the time, and like you responded well to the initial treatment.
We were encouraged by this as we were told the stem cell tends to be more effective in those people who respond well to the initial treatment.
Like you she was hesitant wondering if it would be worth it, after all she had read and been told.
In then end she was really glad she did. She found it easier than the initial treatment, as she found it very heard at times, dealing with the neurophy and the effect of the steriods etc.
Her PP levels haven’t moved, and fingers crossed they stay that way for a while longer.

Hope this helps and best wishes

Graham

[gcoulterParticipant]

Hi

You are clearly going to be there for her, which is the the number 1 thing you can do. In terms of what else then from my experience there are a couple of things you can think of.

My wife was diagnosed 3 years ago aged 48. Like your mum she was, and still is, reluctant to read a lot about Myeloma. I did this for her, and was able to pass it on as and when she wanted to know something, it also helped me re-assure her at times.

I also went along to all her appointments with the consultant, as it is hard for 1 person to take in everything they are saying.

Continue to use the forum, there are loads of really helpful people on here.

Finally, remember to look after yourself and make time for you. This will help you to help your mum.

Graham

[gcoulterParticipant]

Hi

My wife had her stem cell transplant in September after 6 rounds of VTD. Like you she was dreading it.

Whilst it is different for everyone, and my wife did have a tough few days, we would say it wasn’t as bad as she had thought. Perhaps this was the effect all this information had, when you are built up to expect the worst, then it usually never ends up as bad as you thought.

Edel was in hospital a few years ago with pneumonia, which is how they discovered her myeloma, and she found this tougher to recover from. She also found some of the VTD cycles tougher than the transplant, the neuropathy, the effect of the steroids etc.

Even afterwards we were sceptical when the consultant said she would bounce back quickly enough. Her recovery has been great, we enjoyed christmas and treated ourselves to a week of winter sunshine in Tenerife earlier this month. She was even able to go to a friends wedding in December, something we had ruled out pre transplant. One of the little things my wife “enjoyed” in November, was not having a hospital appointment for 4 weeks!

Don’t fear, if you’ve managed to get this far, you will get through your transplant fine. Think of it as the beginning of the end.

I’ll finish off with a quote I gave Edel at xmas from her favourite film, the Wizard of OZ,

“You had the power all along my dear”

 

Graham

[gcoulterParticipant]

Hi Richard

My wife was diagnosed at the same age, then spent 2 years being monitored every 6 weeks or so. She then went on to treatment this time last year, VTD, followed by a stem cell transplant in September. She is now in remission.

I remember when we were first told, it is a very confusing time, trying to absorb and understand everything. Forget about protein levels, bloods, etc, it’s the bit between your ears is the hardest bit to cope with. We decided not to tell others (apart from our sons) initially mainly because we found it hard to mention the word myeloma or cancer to ourselves let alone anyone else. However after a while we adjusted to this and are now much more comfortable talking about it.

It is a huge adjustment, but with the support of others you will be able to get through it. As you will read on here, this is a marathon, and there is no right or wrong reaction to it, or whether you should share it with others, it’s an individual choice with whatever you are most comfortable with. Edel choose “on a need to know basis”, as she didn’t want to be overwhelmed, whereas I did more research initially and passed on information at a time when she felt comfortable to know a bit more.
Our tip would be to give yourself time.
Good luck and take care.

[gcoulterParticipant]

Yes very small world indeed, and yes she had it in 10N. She has recovered really well and has been out and about for around a month now. We were at a wedding a couple of weeks ago, which back in the summer we didn’t think would have been possible.

[gcoulterParticipant]

It’s my wife (Edel) who has Myeloma, and she had her SCT in September this year after 6 cycles of VTD. Our consultant is Dr Boyd, in Mandeville, Craigavon. Stevie if you live in the Banbridge area then I may know you, as we used to be neighbours! Either that or your name is more common than you think.

Graham

[gcoulterParticipant]

Hi Stevie, welcome to the forum, I agree the NHS are super here in NI.

 

Graham

[gcoulterParticipant]

Jane

My wife has been monitored for almost two years now and they’ve been keeping a particular eye on her renal function. Although her protein level is high they didn’t want to start treatment until it was affecting something.

She was advised to drink 21/2 to 3 litres of water a day. She initially found this hard and this reflected in her blood test results. However she then got into a routine and her first test after this showed how effective this was. As she walked in the door the consultant said, “I see you’ve been drinking more water”. She’s kept this up since.

Initially she found it difficult to remember how much she had taken on any particular day, is this glass number 4/5/6? So she started filling a large jug each morning, and poured glasses from this, so she knew how much she had taken or still had to take.

We now know why the doctors and nurses emphasised this so much!

I hope your appointment went well.

• This reply was modified 8 years, 8 months ago by  gcoulter.

[gcoulterParticipant]

Hi

I’m sure the consultant has told you to drink plenty of water, this seems to have really helped my wife. It’s hard to get used to drinking 2/3 litres a day, and initially my wife could never remember how much she had drunk by the end of the day. So she started filling a jug every morning and pouring from it during the day, this made it much easier to keep track. There is a clear side effect of drinking plenty of water, trips out have to be planned around loo stops! We also bought a supply of had gels and have them in the car and in various handbags etc.

In terms of diet then Edel hasn’t really changed that much since she was diagnosed (almost two years ago). In terms of exercise, she would walk regularly, which is enough, it also keeps the mind healthy!

In relation to your lifestyle change, this is really a personal choice based on your own circumstances, the only thing I would say is not to rush into anything, wait until your head is a bit clearer, there is just so much to take in at the start.

In terms of skiing I can see where the nurse is coming from, as there is a clear danger of falling and bone damage (well for me anyway!). Remember you will be meeting your doctor every couple of months for check ups and will be able to ask questions as things arise. We’ve booked several holidays since Edel was diagnosed but only after an appointment when she was given the all clear again, and ensuring the doctor was ok with it (never been an issue).

The forum and staff at Myeloma are also really helpful.

Finally I would really recommend to go along to a Myeloma info day. Edel was reluctant to do this last year, as she was concerned she would be overwhelmed by it all. However she found it really useful to talk to other patients and the Myeloma staff.

Take care

[gcoulterParticipant]

Hi Mark

My wife was diagnosed almost two years ago (aged 48) and we felt exactly the same as you do now, scared confused worried.

Edel was diagnosed after having pneumonia for the 2nd time in two years, she had x-rays, a PET etc and after a bit of deliberation they put her on a watch and wait. Although her protein levels were almost 40, as it was not doing any other damage, they decided not to intervene at he time. Since then she’s had an appointment every 6/8 weeks. In fact at our appointment before xmas the consultant remarked, normally medicine is all about treatment, but this is the only time I can say, look at the effect of doing nothing! She was as healthy as she had ever been.

As someone else had said the first six months is tough, mentally. Forget about protein levels, bloods, etc, it’s the bit between your ears is the hardest bit to cope with. We decided not to tell others (apart from our sons) initially mainly because we found it hard to mention the word myeloma or cancer to ourselves let alone anyone else. However after a while we adjusted to this and are now much more comfortable talking about it.

It is a huge adjustment, but with the support of others you will be able to get through it. Rebecca’s advice is good, this is a marathon, and there is no right or wrong reaction to it, or whether you should share it with others, it’s an individual choice with whatever you are most comfortable with. Edel choose “on a need to know basis”, as she didn’t want to be overwhelmed, whereas I did more research initially and passed on information at a time when she felt comfortable to know a bit more.

In the last two years we’ve generally went about life as normal and squeezed in as much holidays as we could manage/afford! Our tips would be to give yourself time, you will adjust, drink plenty of water, and always have some hand gel with you. We were in Portugal in November and were saying to ourselves we really didn’t imagine that over a year later we would be on holiday soaking in the sun!

Good luck and take care.

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