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
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
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
Really good start with the Velcade, Maureen.
M’s consultant said that a good initial drop was a good sign. Let’s hope it keeps going in the right direction.
Sarah
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.
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
Hi Ali,
My husband had a plasmacytoma last year on his C6/C7 vertebrae. It caused the vertebrae to collapse and compressed his spinal cord. Surgery was the first step (twice – front and back), to stabilise the spine. The surgeon said he “scooped out lots of gunk” but at the time we didn’t know what it was. He was even referred to a tropical disease consultant because there was a suggestion that it was TB of the spine. It took two biopsies before the plasmacytoma was diagnosed, and the next step, 3 months after the second operation, was radiotherapy 5 days a week for five weeks. At that stage the PP levels and bone marrow biopsy didn’t indicate myeloma. He didn’t start chemo until January this year, when the PP had gone up, a PET scan showed myeloma activity and a second bone marrow biopsy confirmed progression to myeloma.
Looking at other people’s comments, this all suggests to me that treatment of plasmacytoma, like so much to do with myeloma, varies according to the individual concerned. I don’t know if it reassures you, but my husband had had considerable pain in his back and neck for 6-7 months before he was referred for an MRI, so the damage was done over time rather than suddenly.
I hope you can get some answers very soon. It’s easier when you know what you’re dealing with, I think.
Sarah
Hi Poppy,
I’m so sorry to hear how unwell your gran is. It must be a very worrying and stressful time for you. Do you have a contact number for the nurses who are coming out to your gran? It might be worth trying to talk to one of them to see what they think about you travelling home in 8 days. They won’t be able to give you any exact information because that just isn’t possible, but they might be able to help you make your decision.
I hope you can find a way of putting your mind at ease.
Sarah
I’m really sorry to hear about your loss. I hope you have good friends and family you can talk to. It’s very tough losing a parent, however old you are.
Do try to find someone to talk to if that would help you.
Sarah
So sorry to hear what a tough time you are both having. I don’t have experience of SCT yet. Hopefully my husband will get to that stage later this year. However, I do have experiemce of him being confused and disorientated (and much more besides). In his case it was psychosis caused by steroids – namely dexamethasone, which is a recognised side-effect. He was hospitalised for nearly 2 weeks after he, as we put it “went loopy”, and, like you, I wasn’t happy with the way it was dealt with. I was constantly fobbed off, but it was serious – particularly when he managed to get out of the ward and end up a mile along the road, having walked in his slippers.
Your wife’s confusion could be caused by something completely different, maybe the infection, but do ask if it could be drug-related, and make a fuss if you feel you’re not being listened to. I have found there is little awareness of the psychiatric issues that can occur during treatments and you really have to push to make any progress. My position is that I will always be polite, but my concern is to ensure that my husband receives the best care and feels safe. Do what you need to do to ensure you are satisfied that you are being listened to – you know your wife better than any of the nurses does.
I hope things get a lot better for you both very soon but it is important now for your wife that she feels secure and for you that you know she is being cared for while you are not there.
With best wishes,
Sarah
That is good news!
I hope you both can catch up on some rest now. You must be exhausted as well as Michael, Jean.
Sarah
So far so good. M had his chemo on Friday and took 20mg of dex on Fri and Sat. He slept really well on both nights, has had a few hiccups, which he controls with breathing exercises, and has seemed quite “normal” (he’s a bit quirky at the best of times :-)).
I know the side-effects of some drugs build up over time, but is this the case with steroids? Do those of you who have dex side-effects find that they are pretty much the same week by week or do they build up – or is it like everything else with myeloma and different from person-to-person?
Thanks,
Sarah
Thanks all.
We’re going in tomorrow morning for the first lot of dex to go with the start of the 5th cycle of Velcade and Cyclophosphamide. I will be constantly checking for side-effects I’m sure, although I have to go to a conference all day Saturday, which will cause me to worry in other ways. We will both try to keep calm about it as anxiety won’t help.
David – the spider feeling sounds horrible. I haven’t heard of that before. M had bad hiccups when he had dex before but the nurses told him it was after-effects of the anaesthetic after surgery. Not a major problem but painful with a damaged spine. Will take Eve’s advice on board if he has problems this time round.
Maureen – he doesn’t have a social worker. No one has mentioned it. Hopefully Tuesday’s physio will not be cancelled and he will get the referral to the hydrotherapy pool too. I’d be very happy to help out with that – nice warm water and a bit of splashing around sounds like a much more pleasant form of treatment than most.
I do feel much more prepared thanks to all your advice. All very helpful.
Sarah
Thanks Maureen,
It is so encouraging to hear of Ian’s progress. I’m really pleased to hear he is coping with the chemo. M has been having physio. He was referred after his second spinal op in order to strengthen his neck muscles enough to stop him needing to wear the neck brace. His neck is doing really well and he gave up wearing the brace just after Christmas – when his myeloma was diagnosed! Unfortunately since then the physio has been stop-start. He has had one appointment. The next one was cancelled and rescheduled for about 3 weeks later and then that one was cancelled and rescheduled for next week. At his last appointment the physio (who has since left) suggested a referral to the hydrotherapy pool, and when we checked with M’s consultant he thought that was a good idea.
We asked again today about any further help from the orthopaedic team but apparently they have said vertebroplasty isn’t an option for his lumbar spine fracture. No reason given. We might go for a second opinion on that when he gets through the chemo, and ask to be referred to the hospital where he had his previous surgery – or we might even just pursue the appointment that hasn’t come, where he was supposed to be discharged by the spinal consultant following his neck surgery, and talk to him about it.
M is mobile to the degree that he can walk a short distance – e.g. from the hospital car park to the haematology/oncology department, but his ability does vary. He’s applying for a blue badge (after much nagging from me). We know he qualifies as he has a letter saying so, but I think it’s hard for him to accept that he is less mobile at 44 than many friends and family in their 70s.
I think we are both pretty positive but I have the occasional wobble & he internalises!
Let’s hope this velcade regime does lots of PP and light-chain zapping for both Ian and M!
Sarah
Thank you Eve, Maureen, Helen and Keith,
Your responses helped me to have a preparatory discussion with my husband before his appointment today, which , I think, helped him to make his decisions today. Unfortunately the PP has not shifted after 3 cycles. The light chains are down a bit but not as much as the consultant expected/hoped. We had a long discussion about alternatives and the decision was to change from prednisolone to dex, at 20mg for two days – Velcade day and the day after. M is taking antipsychotics and we will be on the lookout for any peculiar behaviour. Hopefully things will be ok. We really can’t go through last year’s experience again.
M’s consultant is going to take his case to the myeloma MDT team and talk to a colleague in another hospital to take some soundings about whether we should be looking at changing the regime.
There are some positives: the disease is stable , not progressing, and M is not feeling too bad, apart from mobility difficulties & being slightly neutropenic.
Thanks again for your help. It makes a difference to feel more informed.
Sarah
