[emmasue123Participant]

Hi there – my question is related to travelling with myeloma. My husband has high risk SMM and we are planning some trips. I’m taking out travel insurance with Freedom who are very helpful.

My question relates more to what happens if he has to have treatment for MM. To what extent can h/we still travel – I know the answer to this will vary hugely from person to person but I’d be interested to hear of others’ experiences: have you travelled whilst being treated?

I’ve made an assumption that if my husband needs treatment (which according to the doctors, is highly likely and he’s being monitored every couple of months at moment), we would have to cancel all our travel plans (hence the insurance was so important) but wondering now if that really would be the case if these were trips no longer than a few days or, at most, two weeks.

What are others experiences and advice please? Thank you so much!

[chris55leesParticipant]

Hi Emmasue123

I was diagnosed with Myeloma in 2012 and on maintenance have had insurance for holidays in America ,Europe ,New Zeland during the first remission .

In June 23 I stopped having Daratumumab as I had relapsed on my 2nd line treatment .I really wanted to visit my daughter in Australia.My consultant agreed that I was fit to go holiday for 2 weeks in September and as soon as I returned I would start my 3rd line treatment . It was a little more difficult even with the more specialist companies to find one that would give me insurance and it did cost £450 .I was so happy and had a great visit .

Also from my experience it’s important that your consultant does write in your notes you are fit to travel and this should be written so close to the start of the holiday – obviously check with insurance company ,keep records of any visits to GP hospital etc for any medical complaint as well as myeloma as the insurance companies do ask lots of questions and be completely honest .

Best of luck and hope you some lovely holidays.

Chris x

PS I have never had to make a claim

[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

[emmasue123Participant]

Thank you both so much for your replies – it’s really encouraging to hear. chris55lee – how wonderful you’ve been able to travel- gives me so much hope to hear of your experiences and gcoulter likewise – really really helpful to have this information and real experiences. My husband was only diagnosed in November so we are still learning how to adapt to it all and travel is one of those things that we feel is really important to do and plan for. thank you again SO SO much.

Wishing you both many more happy travel experiences.

I will definitely shop around for insurance as the quotes I’ve been given thus far have been much higher – around 6oo!

x

[rabbitParticipant]

Hi Emmasue123,

I am now in remission after 1st line treatment, but from the start of treatment I was told that it was possible to skip one my weekly sessions in order to travel.

I would just say – to manage expectations – that chemo often causes fatigue. It may be best to plan anticipating this.

In the end, during treatment I only did a couple of long weekend breaks, partly due to fatigue. That gradually reduced after I went onto maintenance. I am now doing more active travelling (having come to a special deal with my employer on having a lot of annual leave this year to make the most of remission).

Regards
Rabbit

[mulberryParticipant]

I am involved with one of the local myeloma support groups. Many of our members regularly take holidays, often including foreign travel.
The person who originally set up our group was diagnosed with active myeloma 19 years ago, and has been on many lines of treatment over the years. Despite treatment she has usually taken holidays abroad 5 or 6 times a year (except during COVID travel restrictions) saying that this is what has kept her alive & well so long.
She has inspired other group members and numerous others have multiple overseas trips each year too. She’s currently off on her second holiday of the year, and today I’ve booked a trip to Mexico.
Holidays, & anticipating and planning them, are important to my quality of life.
And my Dr encourages me to take them, even when I’m in active treatment as at the moment.

[briggs-family1974gmail-comParticipant]

Are there any precautions you should take when going on holiday. We hope to get away to USA when stem cell transplant is done and we are allowed to travel
At the min the transplant is planned for May/June and we provisionally booked to go away in March 2025. Do you think from your experiences this is possible and if so do you wear masks etc on flights ?
Have been quite reclusive at the minute to try and get through treatment as quickly as possible with no infections etc. the thought of rejoining society can be quite daunting

[rabbitParticipant]

Hi,

You mention a few things. I can respond based on my own experience, point of view and plans, as a layperson with MM.

“At the min the transplant is planned for May/June and we provisionally booked to go away in March 2025. Do you think from your experiences this is possible…” It should be doable. 9 or 10 months is far more than the typical time that people take to recover from a stem cell transplant. The rule of thumb that I have seen is 100 days.

“… and if so do you wear masks etc on flights ?” Personally, I don’t. I have flown – short haul – on 4 return trips since I went into remission. One thing which I learnt from reading up on Covid travel restrictions during lockdowns was that the air on flights is filtered (using HEPA filters), so infections during flights were relatively rare.

“Have been quite reclusive at the minute to try and get through treatment as quickly as possible with no infections etc. the thought of rejoining society can be quite daunting” I went through this myself. Before going into remission last July, I stayed pretty close to home (in South East England). I built up my self confidence by first flying to Scotland (a relative was performing at the Edinburgh Fringe so I travelled around Scotland and saw him on stage), knowing that I could still access the NHS. My second trip was to Denmark/Sweden (which has some of the best healthcare in the world). Yes, my carbon footprint has been pretty big lately!

In terms of infections, one danger is with food and drinks. I suggest caution with the hygiene standards of restaurants, cafes etc. I have been advised not to have ice in drinks, not to have cold salads, to be cautious or to avoid raw meat and fish (e.g. sushi). This was all from a dietitian, to avoid bacterial infections.

[briggs-family1974gmail-comParticipant]

This is all good to know. Thankyou for your response.

[Author]

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