Tagged: Peer
This topic contains 11 replies, has 5 voices, and was last updated by 
kh0305 1 year, 8 months ago.
Hi all,
New joiner to the forum here. Name’s Ethan and I’m 46 years young. 4 and a bit months post diagnosis because it’s taken me that long to read all the threads on this forum.
What a sneaky disease this is. I think it’s been active in me for at least 7 years and apart from a few ‘gym’ pains who’d have known.
A big thanks to all forum contributors as I’ve learned a lot and it’s especially useful in my context being I live abroad where I don’t understand the language. 8 years here and I still haven’t got it down.
I was diagnosed and am currently receiving treatment in China. Originally from the UK though. Decided to stick with the company’s private health insurance, and although I’m able to travel anywhere except the US for treatment, I have built rapport and trust with my current doctor.
So far, had 4 cycles of VRD which bought the level down and am just having two days of intensive Etoposide. I will be vomiting early New Year’s Day this year but alcohol won’t be the culprit! Stem cell collection and perhaps tandem SCT planned in the coming months.
Anyways, thanks again for all the useful info. on this site. It’s certainly been of great benefit to me and I’m sure many others who don’t end up registering.
Happy New Year!
Ethan
Welcome to the forum Ethan, and Happy New Year (although I guess you’ll have to wait a while for Chinese New Year).
Wishing you all the best in your treatment, and may you do as well as many of the other “young” patients.
It’ll be interesting to hear how your treatment protocol differs from the ones commonly used in the UK given that all health systems seem to be collaborating with research and sharing results.
Best wishes
Jane
Hi Ethan,
Welcome to the forum, I am one of the volunteers on here. To be honest, you are the first that I heard of living with MM in China! How are you coping with COVID at the moment?
All of those on the forum are either living with the disease, or are carers of those living with it, so we know exactly what you have gone through, and we know what the treatment is like as well. We are not Doctors, but we do know how you must be feeling, and we have our own different coping strategies for getting your head around it all, and being positive for the future.
Please use the experiences of the many people on here who are willing and happy to help you and your family get through it. I am 3 years post-SCT and do not have any signs of active cancer at the present time, so the treatment has worked well for me.
You are probably also aware of the peer buddy service where you can refer yourself to Myeloma UK to be paired with someone who has the disease for up to 6 telephone sessions with one of the volunteers to talk about MM, the various treatments they have had, or just the universe, life and everything. I can recommend this service to you if you think you might need some of that kind of support. You don’t have to do it now if you don’t want to, but it is useful to know that it is always there at some time in the future if you need it.
There are some excellent treatments out there for MM, and although it is not curable, it is very possible to lead a normal and fulfilling life whilst living with it. Please stay positive and let us know how you are getting on.
Happy new year!
Regards, Tony
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
Hi Ethan,
I am sorry to hear that your wife suffered as a result of them not telling you what was happening! As for COVID, yes you are better off getting it now as the SCT will destroy your immune system which means you would not be able to fight it off. They would have probably postponed the SCT until the COVID had cleared up.
The reason why you are in isolation after SCT is that you are very vulnerable to catching anything and not being able to fight it off 9even a common cold!). The immune system does recover, but it may take several weeks to do so. During that time you have to be protected as far as possible from being exposed to anything which might be harmful to you.
Hopefully, you will be over COVID soon and you can have the SCT as planned. Let us know how you get on.
Regards, Tony
Hi Ethan,
Happy New Year and welcome! Sorry to hear of your diagnosis and subsequent COVID infection but glad to hear you are feeling better.
My dad was diagnosed with MM back in 2013 and, much like you, had no doubt been living with it for a long while as the various trips to the doctors for his pains were put down to his job so it took pneumonia before they looked into it further. Anyway he is still with us and on third line treatment now after relapsing at the end of 2020 and the 2nd line not working for him. He is now plateauing and they are pleased with his progress. He is on IRd. Your age will definitely stand you in good stead to get through and back to a fairly normal life again and as ready mentioned, it is a very treatable disease.
I hope your wife is feeling more comfortable with the diagnosis. It is hard to hear the dreaded C word for the ones you love and the way I dealt with it was just researching it like crazy and asking as many questions of the medical team as I could (I took a lot of notes!). The forum and peer buddy service are also great sources of support for both patients and carers if she is still struggling she might find some helpful information/conversations.
All the best for the treatment and hope you’re over the COVID soon xx
@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
Sending very best wishes for a smooth ride through your SCT Ethan. Try to use as much ice as possible ( total overload) prior, during and after the melphalan infusion, it really does prevent mucositis, or the worst if it.
Hi Ethan,
I’ve just read your posts and wish you all the very best for your SCT. Sometimes it’s a relief to get on with it after all the waiting and wondering.
I echo Mulberry’s advice about sucking ice or ice-pops throughout your melphalan infusion. I’ve had two transplants: the first one without ice gave me terrible mucositis that really interfered with eating and drinking and hence my recovery in general. By the time I had the second one, I had read about the ice-lolly trick and just had it very mildly and was out of hospital in half the time.
I didn’t know about using it before and after the infusion as well, though, which sounds like good advice. I hope that all wards keep ice lollies in stock now.
Do let us know how you get on, when you’re feeling up to posting.
Hello @kh0305,
I’m so pleased to read that IRd is working well for your dad. I might be starting that soon, so it’s encouraging to know that he is plateauing. Does he find the side-effects manageable? I hope that he will continue really well.
Hi Ethan,
Thanks for the update. Good to hear all going mostly smoothly so far and hope it continues to do so. Do keep us updated with your progress as you recover. Hope you are feeling much better soon xx
Hi Sandy123,
In terms of the side effects of the IRd, dad has actually had far less severe side effects on this than on DVd which made him really poorly. I guess everyone reacts differently but hopefully you will also have a good experience with IRd and minimal side effects. Thank you – so far he is still plateauing but having a couple of weeks off treatment currently due to neutrophil levels but hoping all will resume as usual after this! Good luck with the treatment xx
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