[richfsModerator]

Hi Mr I Am Positive (a good attitude to have!)

Wow, sounds like a rough ride with Covid, but good that they got you through it and now starting treatment for myeloma – a lot for you to take in.

What treatment are you on? Most myeloma treatments are much more tolerable than ‘traditional’ chemotherapy, mostly it’s the rollercoaster of excessive energy and fatigue from the steroids that get to you. Keep your positive attitude and make sure you fit in some good things each day, look to the future when you’re off treatment and well.

Best wishes,
Rich 👍

[mriampositiveParticipant]

Hi Rich
Sorry for the delay in my reply, I was scheduled to start my treatment at The Beatson Cancer Centre in Glasgow on Tuesday (6th Dec) but when I arrived the detected that I had a temperature of 38.1, I didn’t feel unwell but the decided to run a number of tests and then decided to admit me to a ward. I was allowed home last night (7th Dec) as my temperature was back to normal and my bloods infection markers were okay. My treatment has been put back a week to allow me to finish the course of antibiotics. My treatment is now scheduled for Tuesday 13th Dec. I will be getting Daratumumab (Darzalex), Bortezomib (Velcade) and steriods (Thalidomide & Dexamethasone). I am imagine that like most people starting treatment I am a bit apprehensive. In my mind I have planned for a tough time ahead for the next year but hopefully can look forward to getting back to near normal for a number of years. If there is any advice that you can offer to help me through this coming year I will welcome it with open arms.

Kind reagrds
Graham

[mulberryParticipant]

Welcome to the forum MrI am positive, (good name).
I take part in the Rudy study (long term study of rare diseases, all myeloma patients encouraged to join), and as part of this have had periodic COVID testing.
According to this I have antibodies not only from the (now 6) inoculations and boosters, but also from infection. This must have been absolutely asymptomatic, as I have not been ill at all (until I caught a cold after I got the test results back) I was dismissing this, but mentioned it to my consultant who said it’s far more likely that I was asymptomatic than the results were false.

[richfsModerator]

Hi Graham,

Thanks for your message. Ah, yes, a pain to have an infection, but worth getting it sorted before starting treatment.

It will all seem very daunting at this stage, and you may find that when you go into hospital for the treatment that everything seems very surreal to you, but very ‘everyday’ for the staff. Just go with the flow and get to know the staff, the whole thing is easier when you’re working together for a shared outcome.

The treatment you’re about to start is the normal – and best – combination at this stage. Back in 2019 when I was treated, Daratumumab hadn’t quite been licensed for a first-line treatment, so I had VTD, whereas now you get the full DVdT (or VTDd!)

The 2 ‘chemotherapy’ drugs, Dara and Velcade, are not like traditional chemotherapy
drugs, so whilst you’ll definitely get some fatigue and a little fuzzy-headedness, you shouldn’t experience much nausea of other side effects. In my experience, any side effects come on gradually and don’t catch you off guard, so do try not to worry about them too much, but be quick to phone your specialist nurse or the ward if you’re worried about anything at all, and of course look out for signs of infection (I’ve not had any infections whilst being on treatment, but it’s always a possibility).

As the cycles progress, you may find that some of the side effects build up, for me it’s the fuzzy head (a.k.a. Chemo Brain), and tiredness. Just remember that whilst these are frustrating, they’re manageable and short lived. You’ll find that there’s a weekly pattern of good days when you’re feeling pretty normal, and bad days when you have really low energy.

Velcade is known to cause peripheral neuropathy, I’m sure you’ll have had this explained to you, but basically if you experience any tingling in your hands, feet, legs, back or lips, it’s probably from the Velcade and will subside once you’re off treatment. I didn’t suffer much with it, and it all cleared off soon after treatment finished. I’m on a second-line treatment (DVd) now, and after 4 cycles have had no issues with peripheral neuropathy at all.

Velcade, in my experience, is very effective, it’s a great option for treatment. Do you have IgG myeloma or light chains? What is your pre-treatment level? My paraprotein level dropped from 40g/l by about 60% after the first 3-week cycle which was very encouraging, and continued to drop to around 2g/l at the end of the induction chemotherapy, and was 0g/l after the Stem Cell Transplant, late in 2019.

I assume you’ll be having a Stem Cell Transplant (SCT) in the spring of 2023? The SCT isn’t as daunting as your team may make it sound, but for now put that out of your mind – it’s a long way off. By he time you get there you’ll have learnt a lot about what it’s like being on treatment.

Do reach out to us on the forum, we know what it’s like. I was terrified of going onto chemotherapy, but this treatment really is easy to take, just allow yourself time to rest and space to relax, it does affect your mind as well as your body and I find that hard to deal with as I’m usually so mentally able.

I can’t finish this without mentioning dexamethasone… You’ll get used to the highs of ‘Dex Days’ and the extra physical and mental energy that you have, but also the lack of sleep that you’ll get, then tiredness and feeling ‘flat’ on the down days when you don’t have any dex. Some people find it affects their mood and they’re quite grumpy, this hasn’t happened for me – but my wife might tell a different story!

The Dara doesn’t seem to have any discernible side effects for me, aside from mild nausea around bedtime on days when I’ve had it, which is easily seen off with a dose of Domperidone – do keep some handy. This side-effect diminished after the first few treatments.

You’ll get through this, do plan some nice things to do each week, and think of the years that are ahead of you when you’ll get back to a full and active life. Just don’t do what I did and come out of treatment raring to go and then land yourself in a global bloody pandemic!!

Best wishes mate and keep that positive attitude,
Rich 👍

• This reply was modified 1 year, 11 months ago by  richfs. Reason: Correct typo

[mriampositiveParticipant]

Hi Rich

Many thanks for all of the information, it is very much appreciated. My consultant fired a lot of information at me at my first (and only) consultation with her but nobody has sat down and explained the full process with me. The information that you have set out is the most information that anyone has given to me. I have had a few booklets given to me that explains the process.
In your reply you asked “Do you have IgG myeloma or light chains? What is your pre-treatment level?”, my answer is I don’t know, I have only been told that I have Multiple Myeloma, I presume that I may need to ask my consultant when I next see her.
I am scheduled to start my treatment on Tuesday 13th Dec. Hopefully it will all go to plan this time.

Many thanks
Kind regards
Graham

[richfsModerator]

Hi Graham, Just to say “All the best” for (hopefully!) starting your treatment tomorrow. Don’t be surprised if it seems a bit overwhelming, they’ll just get on with things and some hours later send you home with a bag stuffed full of all sorts of pills. Just take one day at a time, and be quick to phone your haematology team if you have any concerns or questions, generally the specialist nurses are the first port of call, they all know that you’ve got a lot going on and will be happy to help.

You may be a bit tired and nauseous after the Dara, so give yourself time to rest and have some anti-sickness tablets to hand (I find Domperidone effective).

We’re all here for you as well, so do reach out to us, but we might not reply immediately.

Starting treatment is the first step back to good health, you’ll get there.

Rich 👍

[mriampositiveParticipant]

Rich

I have started a post in the Treatment section, the information that you have given me about what to expect during my treatment is very helpful. It will be interesting to see if I get any more information from others.

Thanks again.
Graham

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