[welshwillParticipant]

Hi My name is Will, I am 56 years old and I arrived at a Myeloma diagnosis last week after 6 weeks of tests that moved from a probable bowel cancer via lymphoma to Myeloma.

I am now a couple of weeks into my steroid/Thalidomide/Velcade treatment and I start Darzalex next week.

I am being treated at the Royal Marsden.

I have multiple myeloma in my pelvis that has grown a huge Plasma Sarcoma in my belly on my colon – hence the original investigation for bowel cancer. Apparently its the size of a big yam and 2-3kg in weight, crikey. Difficult to get your head around steroids removing that in a few weeks.

The Doctor believes this has been growing for a period of time that could stretch to a few years and he has termed the myeloma as indolent, which sounds reassuring but all this is obviously new to me.

In the short to medium term he is talking about a stem cell replacement therapy if I respond well to the current treatment.

I am a scientist and so I come seeking information, but also support from others who understand what is happening to me because they have gone through it all themselves.

Currently the only ill effects I am feeling is agitation due to the steroids, other than that I feel normal, if I hadn’t have haemorrhaged I feel pretty sure I would still be walking around with no clue there was anything wrong with me.

The only change to my lifestyle has been I have had to stop going running as a precaution, although the anaemia was making that another cause of anxiety rather than a pleasure. So now I try and do 2 hour walks every day, so I am just off now for today’s .

I look forward to hearing from you and learning from you.

[rosaryParticipant]

Wil

I’m sorry I can’t help on your particular journey/ symptoms to Myeloma but I hope it will help to say I believe you are in very good hands at the Royal Marsden where I am being treated and I think there is an excellent Myeloma team there.

My family would smile at what you describe as “agitation” from Dex. It certainly had its impact on me for a while ….

I’ve recommended to others an excellent web site and educational resource for myeloma patients http://www.Healthtree.org.

Good luck with your journey

[welshwillParticipant]

Thanks for the link

I will check that out

[shaun3Participant]

Hi Will,

I’m sorry to read of your diagnosis. I’m 55 and was diagnosed 3 years ago, my disease was in my back and I have two compressed vertebrae. I remember VTD well and I’ve now been through two stem cells transplants and I’m currently in remission. I’d be very happy to talk more about things if it would help. My email address is shaunstaines@me.com if you’d like to get in touch.

If not then of course that’s fine. Just wanted to say tht there are lots of reasons to be positive and loads of treatment options available. The first few weeks and months can be pretty dark, but there are reasons to remain optimistic. Make sure you find a Myeloma specialist, don’t believe everything you read and make sure you take your information from trusted sources (like MyelomaUK). Above all; keep fit, eat healthy and stay positive.

Sending positive vibes your way buddy.

Shaun

[mulberryParticipant]

Welcome to the unwelcome world of myeloma Will, and to this forum. You are in the most capable hands at the Royal Marsden, with internationally respected myeloma specialists such as Martin Kaiser.
As well as myeloma support groups on Facebook, and local groups affiliated to Myeloma UK, there are a number of online resources you may find helpful:
Healthtree, a database and myeloma education site (in USA but has international members)One idea is to match patients with others with similar Myelomas so you may find that helpful since yours is a pretty unusual presentation.
All4cure, another database and info hub set up by haemo oncologist who has myeloma himself.
Dr Brian Durie YouTube info sessions on myeloma (MMRF)
Smart patients myeloma, information forum for patients (rather than ‘support’)
Myeloma is an endurance event, like a steeplechase rather than a sprint. It is perfectly possible to live well with the disease,for years, but as yet the reasons are not clear why some of us can do so whilst others have a multitude of difficulties.
It is good that you are having “the works” thrown at your myeloma with velcade, thalidomide, Dex and daratumumab. Research suggests you have good odds of doing well, most of us here will not yet have had daratumumab as that has only recently been approved in UK.
Jane

[welshwillParticipant]

HI Jane,

Thanks for the links
I have created a login at Healthtree, I saw the myeloma match service but being British felt a bit too reserved to impose, which is silly as it is what it is there for, I will give that another look.

As I have had probably had myeloma for some years without even realising it as I was fit and apparently healthy I hope I am one of the lucky ones who can live with it without too many side effects, I suppose time will tell on that one, especially how I respond to daratumumab.

I am very lucky to be at the Royal Marsden under Dr Boyd and I am a private patient due to having BUPA insurance through work – hence the Daratumumab, I have a whole heap of cards in my favour, now it is all about waiting to see how I respond.

Thanks again

Will

[tony642Moderator]

Hi Welshwill,

I am one of the peer support volunteers. I was diagnosed with MM 3 years ago. I had complete kidney failure and 2 vertebral wedge fractures. I was disgnosed with MM and underwent 6 rounds of VTD treatemnt, which helped stabalise the condition. I was then offered ASCT which I decided to have as my prognosis was not good. The teatement is unpleasant, as is the isolation in hospital, but the outcome is that I am still here and relatively fit and well 2 years later. The cancer remains inactive and I am tested every 3 moths for signs of it coming back. I was told recently that if I had not had the ASCT I would not be here by now!

Having the treatment was a no brainer for me, but of course it has to be a personal choice. If there is anything else I can help with, please let me know.

Regards, Tony

[welshwillParticipant]

Hi Tony,

Thanks for the reply. It sounds like I was far luckier than you in my diagnosis – both an indolent set of Myeloma tumours and they were supersensitive to treatment, so although I had 6 rounds of VTD and a stem cell transplant I was rarely feeling sick, mainly just after the SCT.

I did find the middle 7 days of my isolation period rough, but I had a lovely lady in charge of the food who made me eat and was very kind and so I got through that on chicken soup and marmite on toast.

I am now in a complete clinical remission, no sign of the Myeloma and I have started my Maintanence treatment and I am going back to work in 2 weeks time so I am feeling good and lucky.

I hope we both stay fit and well for as long as possible.

Regards

Will

[tony642Moderator]

Thanks for the reply Will,

I am really pleased to hear you are doing so well, I hoe it stays the same for you. Don`t forget that anytime yuo need a chat I would only be too happy to do so, just let me know.

Regards, Tony

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