[richfsModerator]

Hi David et al,

It’s good to read of your early experiences of Daratumumab maintenance. Also encouraging is to see how myeloma treatments are progressing, and things which were once ‘new’ are now becoming mainstream.

I was started on this treatment myself after 8 rounds of DVd starting in September 2022 as a second-line treatment following relapse from the VTD and stem cell transplant in 2019.

I’m interested to hear how you got on as the months progressed on this maintenance treatment?

Best wishes,
Rich 👍

[richfsModerator]

Hi Sue,

I’ve just come across this post from a few years ago and wondered if you’d continued with these drugs, and what your views are?

Best wishes,
Rich.

[richfsModerator]

Thanks for your updates Graham.

I’m glad that you’re now well informed having seen the top consultant. It is so much better when you know what’s going on, and what is planned.

Your IgG paraprotein level was perhaps slightly higher than mine when I started treatment in 2019 (on VTD, as it was then), and it’s good to see that it’s coming down.

I hope that the treatment schedule enables you to join in with the family celebrations this year, it’s good to have some definite things to look forward to.

Do be careful on the stairs!!

Best wishes,
Rich 👍

[richfsModerator]

Hi Zainab,

Thanks for the update, you sound very positive which is great! The hospital-hotel arrangement sounds so much better than being on a noisy ward. Now you’ve have one cycle of VRD-PACE and have seen that it’s been effective, you’ll be able to face the other one with more confidence.

I guess it’ll be a couple of months before they book you in for the SCT, do let us know how you get on and if you have any other questions. The SCT process generally itself isn’t as bad as your team will make out.

Best wishes for what must seem like an uncertain 2023, but hopefully one which sees you return to good health and get your life back,
Rich 👍

[richfsModerator]

Hi Gill,

I hope that the stem cell harvest went smoothly for you on the 27th December. Do you have a date for the melphalan and the transplant itself?

How are you feeling? It’s normal to be scared and really anxious about the STC process, but it generally goes by much more easily than we fear, so try not to let it occupy all of your thoughts. The staff in hospital will look after you really well. Do make sure you have some visitors and people to phone you, you’ll be tired and it gives a real lift to hear friends’ voices.

All the best, and let us know how you get on,
Rich 👍

[richfsModerator]

Hi Graham, good to hear that things are going OK. Yes, Dex is rather ‘disruptive’ to sleep!

Do ask clinical nurses about everything and anything, their day-to-day, hands-on experience is invaluable.

The SCT is a long way off yet, I wouldn’t think too much about it until you’re getting towards the end of the induction chemotherapy that you’ve just started. Most people say that their haematology team make the SCT sound much worse than it actually is as they have to warn you of everything that could go wrong with it, and they certainly emphasise the side effects, but when it comes to it most people find that whilst it’s certainly ‘not much fun’, it is quite manageable. You’ll get plenty of information from your transplant team about the timings and process, and of course we can all share our own experiences with you.

Take care,
Rich 👍

[richfsModerator]

Hi Gill,

Just to add my experience to the others here, from what my team had told me I was utterly petrified of the HDT/SCT process and thought I’d basically be in a semi-coma, in pain and out of things mentally.

In reality, whilst it wasn’t pleasant, I was just really tired, lost my appetite, had mild nausea for a for days (was sick once) and then the few days in the middle whilst my gut was sorting itself out, had some rather odd diarrhoea. The way I normally describe it to people is that I felt the same as I do if recovering from picking up a stomach bug whilst travelling, pretty ropey for a few days, but just needing to rest and get through it. For the first and last week, I was leaving the ward to walk around the hospital garden, and in the middle week was walking and ‘exercising’ around the isolation room as best I could. The tiredness / fatigue was the most noticeable side-effect.

The harvest was very straightforward for me, other than the fact that the GCSF injections caused me some spasming lower-back pain which I wasn’t expecting and was quite worrying, but it quickly passed with some liquid morphine and a few deep breaths. It is something to look out for and be prepared for, then it won’t concern you if it happens.

My STC was back in 2019, I am on a second course of treatment now and am holding the cells for a second SCT as a third line of treatment in the future, it feels like a safety net having the (current) ‘gold standard’ treatment available in the future.

The stay in hospital will have its tedium, do take simple things to do – a bluetooth speaker was my best friend, listening to podcasts, the radio, music, etc. I wasn’t really up to reading books. Regular phone calls with friends and family helped, and ginger nut biscuits were my best snack as they are easy to nibble and help with any nausea.

Do reach out to us for more advice about the stay in hospital as it approaches, and see it as your journey into a happier, healthier future.

Best wishes, and I hope you’re able to enjoy Christmas even with everything that’s going on.

Rich 👍

[richfsModerator]

Hi Graham,

Just checking in to see how you’re getting on with your treatment? Did it go ahead last Tuesday, and are you now in week 2? I hope that you’ve been given a lot more information about the process, and your actual diagnosis and blood markers (paraproteins or light chains). Whilst the whole treatment process can take many months, the first cycle of treatment can be very effective in combating the effects of myeloma in your body.

Wishing you well, do let us know how you’re getting on.

Rich 👍

[richfsModerator]

Hi Znab,

Ah, DT-PACE, yes that does sound rather more intense than the induction treatment that you’ve been on, I don’t have any personal experience of it, but with the extra mix of drugs it’s a strong option to really knock the myeloma on the head.

I guess you’ll have to stay in hospital for the treatment and then a few weeks recovery whilst your immune system gets back on track? This is similar to the SCT process, I was in for around 20 days and can certainly give you some helpful advice when the time comes on good ways of coping in the isolation room for so long. It’s certainly not a holiday, but at least you won’t have to make tea or do any washing up! And now, “post-Covid”, you’ll presumably be allowed a small number of visitors to keep you sane.

I know of myeloma patients who try different treatments, some don’t work as well as hoped, then others work better than expected, it’s a case of your team finding what works for you.

Keep strong, and let us know when you’re starting with DT-PACE and how it goes.
Rich 👍

[richfsModerator]

Hi Graham, thanks for starting this topic, my earlier responses to you are in the Anyone had Covid? topic.

All the best for today, it will become more normal going in for treatment, but may seem a bit time consuming today, I don’t find that any of the drugs made me feel queasy or anything, you don’t really feel them going in.

Rich 👍

[richfsModerator]

Hi Znab,

I’m really sorry to hear that the SCT has been delayed. You’re certainly not the only person to experience this, but it’s frustrating after the induction chemotherapy has seemingly worked well.

Are they giving you more cycles of the same treatment, or changing the mix of drugs?

Myeloma, sadly, is a very individual disease which can make it difficult to diagnose and to treat. However, there are lots of different treatments available, some treatments work better for some people than for others, and more being developed and tested all the time.

Do stay positive and let us know how you get on.

Sending you best wishes,
Rich 👍

[richfsModerator]

Hi Peter,

I’m really sorry that I’ve not been in touch for ages, I dropped off the scene for a bit, I’ve just read the update in your profile, but I don’t think anyone sees these so it would be better to post in a new or existing topic (thread).

Sorry to hear that your SCT has been delayed as the myeloma is active again, I hope that they can quickly get it under control. It is good to know that there are lots of different treatments, some work better for some people, it’s a very individual disease. Also good to read of new treatments coming along which will be available in the next few years.

Do let us know how you’re doing. I’ve had to go back on treatment myself after 2½ years of effective remission, it’s going well so far.

Very best wishes,
Rich 👍

[richfsModerator]

Hi Graham – it’s me, Rich, you’re not being dense, that’s a limitation in the forum, it’s very much the ‘toilet roll’ approach, all new messages are at the bottom of the ‘topic’, and there’s no way to reply to a person/message outside of the flow of the topic. It’s very much a public forum.

‘Topics’ are what I’d normally call ‘threads’.

I was going to suggest that you start a new topic in the ‘treatment’ section, as your initial message is relating to Covid, but now you’re reaching out for advice on treatment, and the forum users are very good and supportive as we’ve largely been through similar treatments (and similar levels of shock at diagnosis).

I just read your ‘update’ which explains your journey thus far, but I don’t think those profile sections get seen by anyone unless they go looking, sorry about that.

So, do start a new topic by scrolling to the bottom of the page in the ‘Treatment’ section, and you’ll hear back from me and others.

All the best for tomorrow.

Rich 👍

[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 👍

[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, 10 months ago by  richfs. Reason: Correct typo

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