Hi David
Good to see the side effects seem to be easing for you.
My wife had her first injection last month too, what a difference, in and out in 20 mins.
Like you are pps, bloods etc normal, or as normal as they can be 🙂
You’ve just reminded me, must book those flu jabs!
Good luck
Graham
Hi Lucy
Glad you found it useful.
There are a couple of other threads, which a couple of people posted updates during the treatment, and the maintenance afterwards.
Good luck with your journey.
Graham
David
That’s good news, my wifes journey has been similar. She started cycle 8 yesterday, as you said a few changes have been made at the unit but treatment went ahead.
PPs down to 1 now, neuropathy and bowels the main issues, but less so than the first time round, fatigue hasn’t been an issue for her thankfully.
A 2nd transplant or not has been the big question for her over the last month or so. She had already discussed this with the consultant last month and was due to go back again in a few weeks again to finalise her decision.
She’s probably going down the maintenance route, she’s been open minded about this, but the last consultation tipped her towards this, even though the consultants recommendation was the SCT was the most clinically effective.
Knowing that the 2nd SCT is riskier, it will not be as effective as the first, there are more maintenance options available, along with the fact she was told she will likely be on maintenance anyway, has led her to change her mind and choose maintenance.
My personal view (and clearly I haven’t spent years studying to be a specialist consultant 🙂 ) is at this stage of Myeloma treatment/research a 2nd stem cell is a 50/50 decision, no right or wrong answer. Clinically speaking consultants still recommend them but I reckon in a couple of years that will change. The issue at the minute is they don’t have the clinical evidence to prove anything else, and to be honest they weren’t trying to persuade her either way, recognising it is a personal decision and there was no right or wrong answer (my humble opinion of course!).
Stay safe everyone
Graham
Hi
Dara seems to be very effective (accepting everyone is different of course).
You also need to consider that a 2nd stem is unlikely to be as effective as the first and staying on dara could be just as effective.
We’ve had an initial discussion about a 2nd stem cell with the consultant, they’ve said we need to weigh up the risk associated with the stem cell with the benefit of a treatment free period vs ongoing monthly hospital visits.
The consultant was surprised my wife was considering a 2nd stem cell, as many patients don’t want to go through it again and opt for maintenance.
The other thing to bear in mind is that there are other similar drugs to Dara coming along. We were surprised treatment started earlier than the first time but were told that’s because there are now more treatment options available to enable them to get on top of it.
If you’re not already on the Myeloma private facebook group I’d encourage you to join. I’ve recently joined and can’t get over how active it is. A couple of articles were shared this week on new treatments which may help.
Graham
Hi
There’s a section on the website with some specialist insurers listed on a Infosheet.
https://www.myeloma.org.uk/help-and-support/living-well-with-myeloma/travel/
We’ve got worldwide insurance from a packaged bank account and I paid around £100 extra for declaring my wifes Myeloma. This mightn’t be an option for this trip but worth exploring for the future.
Good luck and enjoy your trip. We’ve traveled loads over the last three years since my wifes stem cell, and even sneaked in a trip during treatment.
Graham
Hi
I mentioned those pesky steriods in another post.
My advice would be to get ready for the mood swings and have some meditation music on tap!
The neuropathy kicked in a bit earlier, but has been manageable as the velcade dose isn’t as high.
After the third cycle they’ve reduced the dose of this to minimise the neuropathy.
My wife hasn’t had any real side effect from the Dara, apart from a bit of tiredness. Her platlettes went down a few times but stayed high enough to stay on treatment.
Graham
Hi
A quick update following our consultant appointment yesterday at the end of cycle 3.
My wifes pps have gone down to 5 from 14 after 2 cycles (waiting for the result after cycle 3).
Something must be working! Great xmas present for her.
Not only that she’s got a week off treatment for xmas.
Graham
Hi David
My wife is on a similar path, initial diagnosed in 2014, treatment in 2016. Her pps started rising this year, so back in the summer the consultant decided to start treatment.
She’s now in the middle of cycle 2, and so far so good, all things considered.
No reaction to the Dara, but having a bit of numbness again from the velcade, then there’s those pesky steriods.
Graham
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
