[ElfriedeParticipant]

Dear Fellows:

At first: Congatiolations on the fantastic Olympic Games in London! I have watched a lot and loved the spirit and the wunderful pictures BBC brought into the world. The Closing Ceremony was outstanding.

Should have jumped on a plane and go to London to see maybe the Marathon.

That brings me to my topic: MM and travelling.
I have been diagnosed with MM Stage III last February. After the inital Chemotherapy I feel very good now.

I have always loved to travel and have seen a lot. Now I am afraid just to go 100 miles by train and visit my aunt. I have lost confidence in my body and I am afraid of catching an infection or getting ill while travelling.

How do you handle this? Has anyone here done long travels abroad by airplane?

Any advice would be helpful to me.

Kind Regards from Berlin/Germany
Elfriede

[EttaParticipant]

Hi Elfried
You have come to the right place for info I am sure the many that have been away will reassure you,
Sorry to hear you have lost your confidence but what has kept me going is the saying no pain no gain lol.
You say your feeling good now so believe and you can get that well deserved holiday good luck.

Iam having my SCT next week and am going away in dec long haul.
Etta x

[MicheleParticipant]

Hello Elfriede

You sound like me. I loved to travel the world before my MM diagnosis but obviously have had to stop temporarily. However, I've had a couple of short breaks in the UK.

Stage 3 Myeloma probably means that although you feel good, your bones and organs are at a weaker stage than mine.

I had my SCT 6 months ago and when I had it was told not to travel abroad long haul for at least a year.
I think the main concern was germ/infection related, afterall an aeroplane is a sealed germ container when you think about it and full of people with coughs and colds usually! Fatigue is also a reason to holiday close to home during recovery. Insurance could be tricky too.
I know that despite feeling much better already,I'd never be able to travel long distances yet, but I'll be packing my case again in the New Year!

Michele x

[BADGERParticipant]

Hello Elfriede
I have travelled a bit since being diagnosed in Jan 2009 I do not have bone damage but my kidneys are only about 15% We have been to Jersey Ibiza
grand Caneria and Skiathos I always get doctors permission to travel and full health insurance from MIA travel and take some anti B's with me I am always careful while on holiday we have been to the I.O.W last month not abroad but still a holiday because of my kidneys long haul is not on but Europe seems to be ok go for it
Love Jox

[tomParticipant]

Hi Elfriede

A warm welcome to you.

I have been on a plane many times since my SCT and would do again yes my body is weaker and I get tired but hey I was put on this Land to party and Holiday (work is a bit of a bore)

I say if your fit and the Dr says its fine get yourself off and Enjoy it 😎

Tom "Onwards and Upwards" x

[EvaParticipant]

Dear Elfriede,
I was diagnosed in 2008. During my induction therapy and for a time after my transplant, I did not not travel far. In fact, after my transplant, I waited for a full three months before I went on a long bus or train trip.
When I was in remission, I travelled to China, Italy and the Netherlands. It turned out that I was already relapsing during the trip to the Netherlands, but I didn't know. I felt ill and thought that I had a flu. Maybe I did have a nasty bug. I don't regret any of those trips, though I guess I took some risks.
In order to minimise risks, you can have blood tests and discuss the results with your doctor. If your neutrophils are just a bit below 2, then you may be slightly immunocompromised. Once they drop below 1, it starts to really matter. Of course, your doctor will give you the best guidance on these issues. I have been told to travel with various antibiotics, so if I get an infection and I phone my consultant, then if I am in an inconvenient place I can start taking antibiotics immediately if I am instructed to do so.
Another issue is whether your bones are at risk of fracturing. If they are, it would be unwise to travel on your own to a remote place. It is possible to have a 'dexa' test – a look at bone density which can give you an idea how fragile your bones are. The person who does a 'dexa' test is usually an edocrinologist. Another cause of bones fracturing is if you have a big collection of myeloma cells in one spot in your marrow. I had that, and it led to my arm fracturing. There were warning signs with pain.
I'd like to say that in spite of the risks, I have deeply appreciatd my travels. I'm on treatment after a relapse, and after seeing my oncolgist in London last week, I have travelled to Wales on my own, and then returned home to the north of Scotland last night. I'm very pleased I made this journey and it felt very good to go somewhere by myself. At the moment I am not on steroids and I only take a low dose of Thalidomide, so this is why I am more mobile than I was before.
Good luck with your treatment, and let us know how you are going.
Eva

[ElfriedeParticipant]

Dear Etta, Michele, Badger, Tom and Eva:

Thank you very much for your very kind replies. I very much appreciate your taking the time and write.

I am on my way to overcome the fear. I have just bought a train ticket and visit my aunt this weekend. A first stepp.

Dear Etta, all the best for your SCT next week. My thoughts and good wishes are with you.

All the best to you all and I hope meeting you again here in the forum.

Kind Regards from rainy Berlin/Germany

Elfriede

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