[pandabParticipant]

Hello everyone, my name’s Dave and I had a Myeloma diagnosis confirmed yesterday. I’m 65 in December and considered myself to be in good health until my urine became frothy 8 weeks ago.
Initial blood tests pointed towards Myeloma, these tests were followed by a bone marrow biopsy, a full body MRI and heart scans. Physically I still feel okay, but my mental health has taken a bit of a bashing, I’ve not had any significant health problems before, so this has come as a shock.

I was given a pile of stuff to read yesterday and have been invited to participate in the RADAR Clinical Trial, I’ve no idea how to make this decision between the trial and the established NHS offering.

Today I’ve started a 4-day course of Dexamethasone to try and sort my light chain problem out as apparently my kidneys are struggling.

Thanks to you all for posting on these forums and sharing your experiences, there really is a wealth of information here.

[mulberryParticipant]

Welcome to the forum Dave and to the friendly company of myeloma patients and loved ones, an exclusive club no-one ever considered joining….
Getting this diagnosis shocks to the core, and takes time to assimilate. Initially it preoccupies every waking moment, but gradually that subsides and it becomes just one facet of life. One day you’ll realise that you haven’t thought about it for a few minutes, and eventually that’ll turn into hours.
When I was diagnosed (like you with little in the way of symptoms) and was told that it was “incurable but treatable” I only really heard the “incurable” bit, and believed that I was on a gradual downhill slope. That really is far from the truth for most of us, especially those diagnosed before multiple symptoms. There has never been a better time to be diagnosed with myeloma, novel treatments are being approved several times a year at the moment. Living with myeloma is like being in a steeplechase, long periods of stability and near normal life, with occasional difficult hurdles, either caused by treatment or illness. For example I’ve now had 3 years virtually normal life after a year of life turned upside down with treatment.
It’s difficult being asked to take part in a trial early on in your experience of myeloma. If you do a search, there was a previous thread about the RADAR trial.
BTW be forewarned that Dex is not called the dreaded Dex for no reason. It can easily turn night into day, give you up until now unknown ability to spend money online (one of my friends bought a sports car on impulse)and it can turn the most mild partners into volatile, bad tempered beasts. If it affects you in any of these ways, let your Dr know, sometimes doses need adjusting. Don’t suffer in silence.
Best wishes, Jane

[mariposaParticipant]

Hi. I’ve just had an Mri ,a Ct booked in 2days and a bone marrow biopsy in 10days.I have a date to get the diagnosis mid /late November.
I feel fine,no real symptoms, but a blood test for myeloma was positive and things have moved quickly since then.
Like you and many others, this is a lot to get your head around…one minute I ‘m calm..then I want to cry. Now I just want to know what I have to face.
I am booked to go abroad before the date for my diagnosis, Fingers crossed I can go for 10days in the sun before reality sets in.
Please keep posting, very best wishes to you and yours.

[pandabParticipant]

Thank you both for posting. Jane, your post is both reassuring and informative. Mariposa, I hope things work out for you and you get your holiday in the sun!

I spent far too much time yesterday reading about Myeloma and the RADAR trial, I think I have information overload so I’m taking a break today.

Best wishes to you all,

Dave

[pandabParticipant]

My 4-day course of Dexamethasone knocked me out for over a week but I’m feeling better now.

I’ve signed up for the RADAR Trial although I’m not 100% sure I’ve made the right decision. I’ve been told I can withdraw at any time. I’m due to start the drugs on Thursday, I understand the first session is by way of an injection.

Dave

[kh0305Moderator]

Hi Dave,
Glad to hear you are feeling better now. Dex does manage to wipe you out quite well unfortunately! Hope the trial goes well for you and as you say, can always withdraw if you feel it isn’t working for you, but good to have the option especially as treatments seem to move on so quickly in the world of MM xx

[tony642Moderator]

Hi Dave,

I am one of the forum volunteers. I was diagnosed 3 and a half years ago. I know exactly what you mean about the mental health issues as I have been through them. What you have to remember that although it is an incurable disease, it is controllable. I cannot comment on the RADAR trial, but I had complete kidney failure and needed dialysis, then had 6 rounds of VTD (so I know what dex is like!) and then I had a stem cell transplant. I am know in what they call remission (although it is not a true remission) and have been for well over 2 years now.

The important thing for me is that I can live a very nearly normal lifestyle and get on with doing the things I like to do. There is always hope and it is important to be in a good and positive headspace, although I know that this is difficult sometimes. This is where we can help tptry to keep you in a positive frame of mind (if you want us to!). please let us know how you get on and what you decide to do about treatment and the trial.

regards, Tony

[pandabParticipant]

Thank you both for your encouraging comments.

I started the treatment yesterday. There are 4 cycles of 21 days, divided into blocks of 7 days, without any breaks.

Day 1 of each 7 day block is the big hit, I have to take Cyclophosphamide,Dexamethasone and Lenalidomide in tablet form and Bortezomib by injection at the hospital.

Days 2 through 7 I only have to take the Lenalidomide.

Early days but I’m pleased to have started the treatment and feel reasonably positive at the moment!

Best wishes to you all,

Dave

[mulberryParticipant]

Here’s hoping for a steady reduction in your myeloma Dave, I remember it being quite a relief when I started treatment too.
The good thing about phase 3 trials as you are on is that the drug combination has already been tested out in phase 1 & 2 trials, is known to work effectively and the hope is that it’ll be significantly more effective than the current standard care. Now, a few years into treatment, I would/will gladly take up an opportunity to be in a trial, but that’s the benefit of being in the system.
If you get any side effects, do report them. Many of us are reluctant to do so, fearing drug reduction will mean treatment is less effective. However this isn’t the case.
I had one drug reduced twice during induction (not one you are on) but still ended up with a Complete Response & without the lasting damage I could have had.
I also had both a dramatic rise in my liver enzymes & a sudden and alarming skin rash from lenalidomide (Revlimid) & my doctor gave me a short break at the end of the cycle. The rash gradually disappeared and I’m still on lenalidomide (now as maintenance) 4 years later without any recurrence of either.
It’s quite common to get GI issues from the lenalidomide too, especially either diarrhoea or constipation (sorry if this is too much info!), treatment can be given to help either.
Hopefully you’ll sail through this, let us know how you find the trial.
Jane

[mattlParticipant]

hello Dave

i`m 56 years old, never been ill in my life, except for man flu where i would just go to bed for a day and sweat it out.

then in august i was breathless, ended up in A&E, and after lots of scans was diagnosed with cardiac Amyloidosis, similar to Myeloma but not quite the same.

The shock was the biggest thing of all to get over, here i was, never been seriously ill ever, and suddenly i have a rare and life reducing disease inside me!

my urine is frothy, i have trouble with my kidneys (or so i thought). I have had every scan and test there is for every vital organ.

when I asked my amyloid specialist about my kidneys he said there was nothing wrong with them, it is my heart which can`t pump the blood round my body properly, let alone pump the fluid out.

experimenting at home i have found the less i drink the better i feel.

i have found that drinking no more than 3 cups of tea or coffee a day plus a mugs worth of water when taking medicines makes my kidneys work better.

perhaps keeping a note of your fluid intake, and altering the amount each day may help you.

its trial and error im afraid.

the mental shock takes time to get over but you will, there comes a day when you accept your situation and start becoming more positive in your thinking/attitude towards it.

just out of curiosity, have your legs, ankles, feet swelled up?

regards

matt

• This reply was modified 2 years ago by  mattl.

[pandabParticipant]

Hello Matt,

I’m sorry to hear of your diagnosis, I hope you manage to get it sorted.

With regard to swelling of the legs, I’ve not had any swelling at all yet although I’ve had just about everything else!

I’m in week 3 of the first 3 week cycle of the RADAR clinical trial, I can only describe the effects as brutal. I think my problem is a reaction to Dexamethasone which kicks in a few days after taking 40mg of the stuff.

I have a meeting with the Consultant next week with blood tests being done the day before, I’ll be interested to see if anything has improved.

Very best wishes to you,

Dave

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