[gcoulterParticipant]

Hi

So for Myeloma patients they get a third shot of the first stage of the vacinne process.

From what I understand this will be a different vacinne from the first one they got earlier this year.

Six months after that they’ll get a booster.

My wife’s went as follows
Feb Az
Apr Az
Oct Pizer

Next April a booster to be confirmed.

I got mine around the same time in Feb and Apr, but will get a booster next month with nothing scheduled after that.

In relation to SCT yes it resets your immune system and your consultant and GP will arrange the appropriate vacinnes a few months after the SCT.

Hope this helps.

Graham

[gcoulterParticipant]

Hi

I would agree with you in terms of the forum being a very good source of information and support from very helpful folk.

I do use Facebook occasionally but get frustrated with it as the same question tends to get asked time and again. Whilst on here I find it easier to find the information, and when I post it’s easier to track the replies and go back again to it later.

I’ve also found it useful to read what people have already posted, which is just too hard to do on FB, it just gets buried and hard to find again, which leads to the multiple questions about the same topic.

So yes like you I wish people would use it more.

Graham
(also a carer)

[gcoulterParticipant]

Hi

Firstly that’s great news about your SCT.
I’m guessing that post SCT you are now on a watch and wait and if they see any significant rises in your paraproteins then they will intervene.
I believe this is the usual approach after a first SCT. Don’t give you any meds unless they have to and avoid your body becoming resistant to them too early.
That is what happened my wife after her SCT. Second time round they intervened earlier to ensure her pps didn’t get too high. First time they also don’t know how long your remission will last so why put you on maintenance if you could be drug free for a few years.
If your SCT hadn’t have been so successful then you might be on maintenance.
Enjoy the (relatively) drug free life, and I hope it lasts for a long time.

Don’t forget you can always ring the Myeloma helpline, they obviously can’t discuss your particular case but might be able to give you some insights. They’ve also more time to do this than your medical team.

Good luck

Graham

• This reply was modified 3 years, 10 months ago by  gcoulter.

[gcoulterParticipant]

Hi Mark

My wife was diagnosed 6 years ago aged 48. Like you it was a watch and wait then treatment 18 months later. Again like you, high risk genetics, but her first stem cell transplant lasted 3 years. Three years of no treatment, and living life to the full. She has just finished her 2nd cycle of treatment and ready to press the accelerator again, well as much as possible in a Covid world!

Good luck with your journey.

Graham

[gcoulterParticipant]

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

[gcoulterParticipant]

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.

2nd line treatment – DVD regime

Darzalax DVd Maintenance

Good luck with your journey.

Graham

[gcoulterParticipant]

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

[gcoulterParticipant]

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

[gcoulterParticipant]

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

[gcoulterParticipant]

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

[gcoulterParticipant]

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

[gcoulterParticipant]

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

[gcoulterParticipant]

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

[gcoulterParticipant]

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

[gcoulterParticipant]

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

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