[gcoulterParticipant]

Hi Darren

It’s Graham here from Norn Iron. You’ve certainly got youth on your side which will help your recovery. My wife was 50 when she had hers in Sept 2016, in December she felt well enough to attend a wedding and a month later we flew to Tenerife.

Everyone recovers differently but 100 days is often quoted as being the time to allow your immune system to build up again.
In relation to flying “home” it wasn’t necessarily the flight we were concerned about, but the airports themselves, security queues, boarding, using the loos etc. When we flew we would have used fast track security, dropped off our bags so we didn’t need locker space and enabled us to board last on the plane.
So I would say August is more realistic but it really does vary from person to person.
Good luck with everything.

Graham

[gcoulterParticipant]

Hi

My wife was diagnosed almost 10 years ago and is about to start her 4th line of treatment. We’ve done loads of travelling during this time and the insurance has not been prohibitive at all. Paid under £200 for an annual policy for worldwide cover.

[gcoulterParticipant]

Hi

We’ve had pauses in treatment over the years so we could travel. My wife turned 50 during her first line and she had a week off and we went off for a few days holiday in the UK.
We’ve also done this whilst on “maintenance” sometimes my wife continued to take the daily Lenalidomide, e.g. when we went to France for 4 weeks, other times she took a break such as when we went to New York. It always feels more of a holiday when she takes a break from the treatment.
In our experience the team always works with you as they know you need to do these things otherwise what’s the point of treatment if you don’t see some benefits, you’ve got to live too.
As I said We’ve worked with our team and planned these out knowing when we can take a break and when it’s not realistic to do it.
In relation to insurance do shop around as premiums do vary by insurers depending on your individual circumstances.
Hope this helps

[gcoulterParticipant]

Hi

My wife has been on Len for 2 years now and during that time has had plenty of breaks, sometimes a couple of weeks, e.g. whilst on holiday, and on one occasion for a month.
She is also in a 5 week cycle, 3 on 2 off, compared to the traditional 3 on 1 off, this was a personal choice to give her a better quality of life. She also stopped taking the dex and it affected her quality of life too much.
So just take from this whilst there are recommended treatment options it is your choice based on the information given by your team and don’t feel the need to stick to the prescribed regimes. It’s up to you, remember this is a long term condition, so generally in the bigger scheme of things a week here or there won’t matter, but in my wife’s case she wants to make sure she balances her quality of life wuth the treatment along the way.
In terms of diet and supplements, we did look into this but weren’t convinced by anything, but that’s a personal choice. I know others will have a different view but 9 years in and my wife still doesn’t take any supplements or has any special diet. She just has to be careful with some foods and they don’t agree with her as the treatment has given her a more sensitive tummy.
Enjoy the time off the medication, as you’ll hear often, this is a marathon not a sprint.

[gcoulterParticipant]

Hi

We’ve never taken out insurance for the meds.

Different option perhaps? We usually arrange a break from taking Len during our holidays. The medical team have always been fine with a week or 2 off. Have a lenalidamide holiday too?

Enjoy the holiday 😎

[gcoulterParticipant]

I’m not sure what the lowest level is just know it drops during the 3 weeks on Len and is why patients have a week off to let them increase again. They generally bounce back up again quite quickly, so it depends when in the cycle both counts were taken. They won’t start the next cycle if the counts are too low.

Do ask about his iron levels as this is sometimes overlooked. My wife is on Len and found put her iron was low, after an iron infusion she felt much less tired and it boosted her blood count.

Graham

[gcoulterParticipant]

Hi

Absolutely we’ve done this a couple of times. Our Haematology team are very good and understand the need to keep living otherwise whats the point of the treatment.
Some of the more junior doctors don’t understand this and will stick to the “script”. However most recognise this is a marathon and a bit of flexibility is needed, as a break from treatment can make a huge difference in terms of a mental refresh.
My wife has taken a month off and had the 4 week cycle postponed by a couple of weeks to accommodate a holiday.
At the end of the day it is your choice the Haematology are there to ensure you make an informed one. Take care.

[gcoulterParticipant]

Hi

I found Allclear to be very competitive. Got a policy for under £200, for worldwide cover and we have been making the most of our post covid freedom, averaging a holiday a month 🙂

Good luck and enjoy your travels.

Graham

[gcoulterParticipant]

Completely agree with Mulberrys response. Getting down to 7 is great, a lot of patients would be very happy with that. However as I’m sure you’re aware by now this is a very individual condition so you MD team decide on a case by case basis for the reasons Mulberry highlighted, in addition to other factors such as age, other health issues etc.

All the best

Graham

[gcoulterParticipant]

Hi

My wife has been on it for 2 years now.
There’s a separate thread on here where a couple of people posted their experience of their treatment over time.

Good luck.

[gcoulterParticipant]

Very similar, I had the Pfizer one too!

[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, 3 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

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