[psg32Participant]

Hello, I’m new here, I have been diagnosed with Myeloma just over ten days ago.
Starting next week I’m having chemotherapy injections for 16 weeks, tablets etc & then possibly a stem cell transplant.

Quite honestly I’m frightened for the stem cell process & I try not to read anymore about the procedures…

A couple of questions please: is it prudent to isolate throughout the chemotherapy or can I try to do something I normally would if I’m up to it ? Also how quickly approximately after the chemotherapy were people able to go on a holiday abroad?

I appreciate that everyone is different regarding the Myeloma, the treatments & recovery. I’m just trying to give myself some positive aims.

Thank you.

[robert0439Participant]

Good Afternoon. I’m no expert but here are my thoughts. I was diagnosed with Myeloma 13 years ago, only 6 months after I retired early. I was still “Smouldering” for a number of years but then the Myeloma became more active. As such, I was put forward for a stem cell transplant which I obviously opted for.

I had this in 2018 in Nottingham. Following on from the extraction of my stem cells, I then went for the transplant. I was in an isolation ward for 3 weeks and it was somewhat of a rocky ride. Very tired and fatigued, slept for a lot of the time. Rather than having numerous injections during this time, I was fitted with a Hickman Line, where fluids were then pumped into me via this.

Since then, I have not really looked back but have had to alter my life somewhat. I take a bunch of drugs to keep me as I am, and as my immune system is pretty shot, I am very careful where I go, and whom I meet with. If I do pick up a bug at all, then it wipes me out for around 3 weeks so as I say, I have to be really careful. Holidays overseas are a no no, but as I say, this is where I have had to alter my life.

Certainly not the end of the world for me but I listen to what the hospital advises and stick to what they have to say. A blood test every month followed by a meeting with my Myeloma consultant.

The NHS have been and still are, wonderful. Without them I would not be here but I am, and enjoying my life to the fullest.

Hang in there mate and I’m wishing you well. Take care.

Kind regards,
Robert

[lynn16Participant]

Hello
I’m also fairly new to this though further on than you. I’ve got through the 16 weeks of chemo and am now waiting for the stem cell transplant. My advice on the latter would be to just engage with the information on the transplant as and when you feel you can. The literature sent out is very scary but once I talked to people who have been through it I got a very different picture. There is lots of experience on this forum too.

On travel and activities during chemo – well I think you need to take care with regard to infection as you’ll be much more vulnerable. If you catch something it will take much longer than normal to fight it. I managed to grab a few days away in the UK during my chemo but such is the weekly routine of blood tests and treatment it’s tricky. However after the first month or two I only needed to get a blood test once a month rather than every week so that makes things a bit easier. The issue with travel overseas is a) insurance and b) potential of infection from travel I guess. Ask your doctor. I know some people with myeloma who have travelled overseas once they have been through all the treatment and are in remission but not before.

Hope this helps. And Good luck!
Lynn

[rabbitParticipant]

Hi psg32 and welcome to the forum.

You said that you are possibly having a stem cell transplant. I didn’t have one.

You asked a couple of questions: “is it prudent to isolate throughout the chemotherapy or can I try to do something I normally would if I’m up to it ?”
Isolating for the whole period of treatment is a lot. You will be getting blood tests which will indicate (among other things) the state of your immune system. The advice that I got was to basically isolate when my neutrophils were below 1.0. It is less necessary when your neutrophils are relatively high.
When/if you have a stem cell transplant, your immune system will be at its weakest. It will take some time to recover. Also, past vaccinations will be irrelevant and you will need to be revaccinated (as hinted at above, I don’t know much on the vaccination specifics).

“Also how quickly approximately after the chemotherapy were people able to go on a holiday abroad?”
As I didn’t have a transplant, I was able to travel straight away. However, I waited a month because:
– There isn’t just immunity to consider. The most common single chemo side effect is fatigue. For me, the fatigue gradually reduced over some months.
– Psychologically, I had to get myself around the concept of “travelling with cancer”.
I therefore kept to the UK for the first couple of trips, so that I could join (first) a family celebration and (then) travel around Scotland (I live near London). That gave me peace of mind in terms of ongoing access to the NHS.
My next trip a couple of weeks later – I had been waiting to travel throughout chemo! – was then a foreign trip.
Since then, in 2023, I have done a lot of travelling and am actually on holiday right now!

Regards
Rabbit

[lynn16Participant]

I would just add – you might find the podcast ‘The Myeloma Minutes’ helpful. I think it’s brilliant and wish my consultant had told me about it before I started treatment. It deals with loads of topics in an informative but accessible way.

[iangrantParticipant]

Hello
It’s all new and scary. I’ve written a book “admitted to hospital” by ian grant. It covers all the treatments/tests including the stem cell transplant I’ve been through.
I’ve written it with some humour from being the patient. It’s on kindle, proceeds go to myeloma uk, Bournemouth hospital
And some publishing costs
Good luck
Ian

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