So as my wife has now started her Dara treatment I thought I would answer my own question and have it here for anyone else who is searching for an answer to this at any stage (I appreciate this might be slightly different depending on where you are being treated).
Each cycle is 3 weeks
Initially there are 3 x 3 week cycles (i.e. 9 weeks in total)
Dara on days 1, 8, 15
Velcade on days 1, 4, 8, 11
Dex on days 1, 2, 4, 5, 8, 9, 11, 12, 15, 16
For the first Dara treatment, it was a 2 night stay in hospital. The first night was to “check in”, and the 2nd night was to monitor for any reaction to the Dara. After that it has been a day patient treatment which has taken from 10am to 4pm.
After this there is a series of 5 x 3 week cycles
Dara on day 1
Velcade on days 1, 4, 8, 11
Dex on days 1, 2, 4, 5, 8, 9, 11, 12
Then the cycles will be every 4 weeks
Dara on days 1
Dex on days 1, 2
In relation to the medication taken at home it is basically the same as the first round of treatment, anti-viral, sickness etc, the one difference is that there are no little injections for blood thinning which were required for the Thalidomide.
We’ve also been given a blood sugar measurement device which has to be used for the 2 days after the Dara treatment.
Hope this helps someone.
Graham
Hi Regine
Thanks for taking the time to reply and for your best wishes. It is re-assuring in a way, to hear someone else was thinking about this option too.
I’m sorry to hear that option wasn’t available to you in the end, and I hope the lenalidomide/dexamethasone regime works for you. There seems to be more options available to medical teams nowadays.
Graham
Hi
I was wondering if you’ve discussed with your consultant taking the stem cell in 6/12 months time if the maintenance regime isn’t working or causing side effects, or you’ve had a change of mind?
My wife is facing a similar decision once she finishes her initial treatment, and it’s something we’ve considered discussing with the consultant. We’d like to find out if she decides against the transplant, is that it there’s no going back?
Good luck with your treatment.
Graham
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
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
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
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
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.
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
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
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
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.
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.
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
Hi Stevie, welcome to the forum, I agree the NHS are super here in NI.
Graham
