[SalParticipant]

My husband has just completed 5 cycles of VCD (although initially the steroid was prednisolone rather than Dex). His PP has remained as it was at the start of treatment. Light chains decreased a little towards but have now increased again. It’s obviously disappointing to have gone through this and have made no progress, although we keep reminding ourselves that it’s stopped the myeloma from progressing.

The MDT has decided that DTPACE would be a better treatment option for him and the plan is for him to have two cycles and then progress to SCT. He will receive the chemo as an inpatient for 4 days each time and the cycles will be 4-6 weeks apart.

We were sent home with plenty of information to look through and it sounds like quite a tough regime, with potential for peripheral neuropathy, which he didn’t have on Velcade, nausea and sickness and hair loss.

Does anyone have experience of this regime? It would be really helpful to know what we might expect or what to look out for, particularly as this is not a combination about which I have previously heard anything (I’m the one who does all the reading and research!).

Thanks!

Sarah

[tomParticipant]

Hi Sarah

Am sorry i have no knowledge of the regime your Hubby has been put on just wanted to wish you both well on the road to remission.

Tom Onwards and Upwards  xx

[SalParticipant]

Thanks Tom.

We’ll probably be a bit less anxious once we know when this is all starting.  It should be next week but the consultant needed to organise BMB, picc line fitting and a bed before he could confirm admission date.

The positives are that it should be a fairly intense but short period of treatment and a fairly rapid progression to SCT.

Definitely a case of onwards and upwards!

Sarah

[SalParticipant]

It’s all happening rather quickly. We got the call to go in this afternoon. It’s better than hanging around wondering! It looks like a bank holiday weekend in hospital for M.

[rebeccaRParticipant]

Hi Sal, wishing you both good luck – sounds like a gruelling but short treatment pre SCT and that seems better than spinning it all out with SCT always looming ahead. As Winston Churchill once said “When you’re going through hell keep going” you’ll soon be out the other side (and it really isn’t like Hell at all – all doable when you keep your eye on the goal).
Rebecca

[bandityogaParticipant]

Sarah

Good luck with the new treatment, you certainly deserve it.

Maureen x

[SalParticipant]

Thanks Rebecca and Maureen,

We’re hoping that this aggressive treatment will send things in the right direction. It’s reassuring that M now knows most of the staff on the ward and he even has the same room as he had for two weeks in January. He’s booked in for BMB tomorrow morning with the nice registrar who talks about football with him. I’ve somehow got to concentrate on work over the next couple of days but it always helps to deal with one day at a time and, as you say Rebecca, we’ll come out the other side.

Sarah x

[SalParticipant]

The best-laid plans and all that …

He’s home again tonight having had BMB and picc line fitted. There’s a problem getting the chemo drugs – something to do with one of them beimg unstable and only lasting 24 hours and the bank holiday weekend being imminent. So now it will probably be Tues or Weds next week before M actually starts the chemo. I’ve worked out that it is basically CDT + 3 other chemo drugs. Anyway, as he’s not on chemo and has pretty good immunity right now, I’ve promised him a Chinese takeaway over the weekend.

A year ago this would all have stressed me out but I learnt pretty quickly that things change from day to day, if not hour to hour, and you can never rely on plans working out.

Sarah

[bandityogaParticipant]

Sarah

I take one day at a time and try not to look to far ahead. Ian is walking much better and now walks a little without sticks so do not give up hope that M will progress. Hope the treatment is not too harsh on him.

Thinking of you both

Maureen x

[SalParticipant]

Maureen,

It’s so good to hear of Ian’s progress. It must be such a relief to see him getting more mobile and doing so well.

I do try to take one day at a time. Work makes that difficult, but I do my best! We’ll enjoy the next few quiet days and I hope you do too.

Sarah x

[rebeccaRParticipant]

Hi Sal – wow 6 chemo drugs – that’s quite a cocktail and I hope it hits it hard, and sounds like you’re at a good hospital and in safe hands. I’m all for throwing the kitchen sink at it.Enjoy the bank holiday sunshine and the takeway n don’t forget some booze – pack in all the things you won’t be able to have/do for a while.

Rebecca

[bandityogaParticipant]

Sarah

Enjoy the bank holiday and have a nice bottle of red.

Maureen x

[meganjaneParticipant]

Sarah,

I hope you are both enjoying the long weekend and that the DTPACE helps get the Myeloma down to a level that will allow M to have the SCT.

Megan

[SalParticipant]

Thanks Rebecca, Maureen and Megan,

The bottle of red is being enjoyed – I get it all to myself as M doesn’t drink (and it wouldn’t make a good combination with the morphine!).

Rebecca – I’ve been reading and in America they sometimes add Velcade to DT-PACE – maybe M is being let off lightly?!

It’s a bonus to have sunshine this weekend. We managed a little walk (5 mins along the path by the side of our house) yesterday and will see if M is up to it again today. He’s quite uncomfortable at the moment, so it’s a case of finding the right balance between keeping mobile and causing pain.

I’m attacking the hedge with my new scary hedge-trimmer this afternoon – can’t let him have too much peace and quiet!

I hope you’re all having a good weekend.

Sarah

[SalParticipant]

We got the phone call at lunchtime today asking M to be at the hospital as soon as possible. He’s started chemo this evening and won’t be moving far as he’s got two lines in one arm and one in the other. The infusions run for 24 hours and the nurses will check every couple of hours, so he’s going to get very tired, I think. He’s also on a very strict fluid monitoring system – in and out!  I think even if the drugs themselves (plus the anti- this and anti-that tablets) don’t make him feel too awful, he’s going to be exhausted after 4 days’ worth of this. If it does the job it will be worth it – probably easier for me to say that than for him.

There was an amazing rainbow this afternoon and we got a great view from his window: a sign of hope!  If I’ve done it properly the picture might even be attached!

Hoping for good news and results for others of you this week.

Sarah

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