[nomadParticipant]

@kh0305 Thanks for the advice. Really encouraging news that your father’s doing so well with this.

So just an update here from my last post. Haven’t been reading the forum as much over the past weeks due to my feeling normal. My wife and I have better come to terms with the diagnosis and have been getting on with it.

After finishing 5 cycles of induction, I went in for stem cell collection not far into this new year. They used a couple of days of Etoposide followed by 3 days of GCSF injections. Some vomiting the first night with the former but some medication seemed to help for the second night. At least they let me home for a week before the white blood cell count dropped and I needed to come back in for the injections and collection.

After stem cell harvesting, I had a nice month’s break from medication. At the following appointment, blood was taken and it’s back already. At least the paraprotein was rising anyways. Just refuses to be beat.

On to another cycle of induction therapy I went. Was on week 3 of 4 when I received the call to go in for the transplant. Call received on Sat evening and admitted this morning (Monday).

A few days on the ward now for final tests and bone marrow biopsy etc and then it’s SCT time. Less blasé about the whole thing now. Worries starting to creep in. Having had a generally easy ride of it so far, I’m hoping it’ll be more of the same.

At least without much prior notice, only so much worrying can be done. Some strange differences in SCT prep here, i.e. ‘bring your own’, but more on that next time.

Best to all,

Ethan

[nomadParticipant]

Hi Jane and Tony,

Thank you for the warm welcome and the useful information on the support available.

Yes Jane, one thing I’m not short on here is holiday. Just finished Christmas break and the longer Chinese New Year is already almost here.

So far, the differences between the UK and China are that there are no GPs here so everything is dealt with by the hospitals. This means that they are quite chaotic. But the doctors have seen every ailment known to humankind serving so many people so have a good idea at what they’re looking at.

MRI and CT scans are done on the day you visit and you can expect a preliminary diagnosis in a day or two. The bone marrow biopsy results take 3 weeks here too, much like I have read they do in the UK. Might be that one of the tests just takes that long to complete.

Much like the rest of the world, CAR-T cell therapy is the next big thing here. It hasn’t been mentioned by my doctor but does look promising. I don’t think lines of treatment are a thing in China but I requested VRD because I am planning to return to the UK at some point.

One negative I’ve experienced is the cultural reluctance to inform the patient of their prognosis. Instead a family member is told and expected to relay the news. Being I’m perhaps a little more sturdy than my wife, informing her led to her having a breakdown.

A very poignant question re COVID, Tony. It is rife here at the moment. I was due to be released from hospital after my conditioning chemotherapy last Sunday. Having signed the release papers and just waiting for my wife to collect me, fever struck.

I was then told that I’d have to stay in. I must of caught it in the hospital as there’s not many that don’t have it. Perhaps better to get it now than shortly after a SCT. Feeling much better today so am hoping to be allowed home today.

All the best,

Ethan

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