Hi Sarah,
I don’t think there is any real answer to this. Nurses and doctors can alert you to possible side-effects and your mum might or not experience them. Like everything else in myeloma, side-effects vary with individuals. My husband’s first-line treatment was 5 cycles of Velcade with Cyclophosphamide and Prednisolone. He didn’t experience any really difficult side-effects, although a lot of people get some peripheral neuropathy. He was very tired and continues to be so. The downside is that this combination only kept his myeloma stable and didn’t reduce it. He’s now on DT-PACE, which is a much more intensive regimen. His consultant is pleased with the way he’s coping with it, but he’s not able to do very much at all as it really knocks you for six.
It is worth keeping an eye out for any side-effects and checking with the docs or the clinical nurse specialist if there’s anything your mum is concerned about or that you notice. Some side-effects can be controlled and there’s no point in being brave if you can get some help.
Best wishes,
Sarah
Great news! Enjoy the feeling of relief – and surprise and, as Megan says, long may it continue.
Sarah
I just wanted to reiterate what Karen says above: if appointments take a while to come through we always phone to check. Quite often the appointment is made there and then. This seems to be particularly the case with scans for some reason. No harm in checking and it’s better than being anxious about how long you are going to have to wait.
Oh my goodness, Eve, what a lot you and Slim have had to deal with – and still do. I’m sure all this has exhausted you but I am full of admiration for your determination to do the very best for Slim at the times when he’s not able to fight the whole battle himself. Stories like yours are important for others, like me, who are still getting to grips with our role in supporting a partner with myeloma. My decision at the beginning was that I would not let go of things if I was unhappy with them. I will always be polite but it doesn’t matter if they think I’m a pain or if they don’t like me: the priority is my husband. It’s hard to stick to that, though. Your experience shows just how important it is that we, whilst respecting the judgement of the medics, shouldn’t be afraid to get second opinions, get further help or whatever it takes, if we feel that is the right thing to do.
I’m sure Slim knows he couldn’t have a better ally than you and I hope you can both have some really good times as you both recover from this latest traumatic experience.
Sarah x
Hello David,
Susie’s advice is good, and as I responded to another post with this advice I’ll recommend it to you too. Macmillan benefits advisors are really helpful and should know about anything that might be available to you. You’ll save yourself a lot of time and stress, I think, if you contact your local one. You can either make an enquiry directly with Macmillan or your clinical nurse specialist should be able to put you in touch.
By the way, my husband is nowhere near 65, but the advice is available to anyone and the Macmillan advisors have a very comprehensive knowledge, including ways to speed things up where possible.
Best wishes,
Sarah
As I understand it, it has all changed and new claimants have to claim for PIP (Personal Independence Payment). The higher rate is based on your ability to do things for yourself and the support you need. My husband is receiving it because, at the time of completing the form, which is what they assess, he was unable to walk more than 50 metres and needed assistance with some basic activities like getting dressed, cooking a meal etc. His condition fluctuates a bit but he’s certainly in that position now. There are different qualifying categories and the claim can be (supposedly) speeded-up for people who are in the final stages of their illness – but your disease does not need to be terminal in order to qualify.
This is a sketchy overview based on our experience so does not give a full picture. I don’t know what happens if you are already in receipt of DLA. We received a lot of help and support from the MacMillan benefits advisor who is based in the Citizens Advice Bureau locally but came to visit my husband in hospital. He was able to speed up the claim and to reassure us. I would recommend contacting your local advisor as they deal with these claims all the time and can help you fill in the forms. I’d certainly recommend getting all the help you can. The forms are lengthy and it’s hard to know what is relevant. We’re both graduates and we struggled!
I’m sorry to hear you feel you are at that stage in your disease. Having a little security in order to afford the help you need would certainly relieve some of the stress.
Sarah
Fantastic news!
Time to really enjoy life again. Hoping for a really long, healthy and happy remission for Graham and peace of mind for you, Angela.
Sarah
Hi Deborah,
It sounds like UCLH has a lot more options when it comes to keeping an eye on you than our hospital here in Swindon. Here you are basically in or out, and if it works well you get into the specialist haematology/oncology unit. M is now home after a very sudden discharge yesterday evening. No hint of it on Thursday so I went to a meeting in London and didn’t even know he was coming home till he called me, having arranged for a friend to collect him and take him home. I then went into panic mode: he had been in isolation with nurses wearing aprons and gloves, and his room being cleaned twice a day and I hadn’t even had time to clean the bathroom. An evening of bleaching everything in sight then followed.
He is much brighter now he is at home and can catch up on sleep. He hasn’t had the feelings of sickness but has no appetite. The doctors were talking about the next cycle possibly starting in about 3 weeks’ time. He’s seeing his consultant on Friday so they will discuss it then. Last week when he saw the consultant he said that they may do a 3rd cycle if he responds well to the DT-PACE and then progress to SCT from that. The recommendation was for 2-4 cycles.
As with you, M’s consultant thought he had come through the DT-PACE pretty well. The C.diff was an unfortunate added extra. At the moment he’s losing his hair in handfuls. People always seem to assume that it doesn’t matter much for men, but I think it’s pretty rotten for everyone.
Your fatigue could be a result of the radiotherapy. M had 25 fractions last year and was really fatigued for a couple of months afterwards. However, the combination of the chemo and the infection is really tough on your body, so no wonder you are not feeling perky!
I hope your next DT-PACE cycle goes as well as it can. We’re focusing on looking beyond this stage and hoping for a really good remission – and I hope that happens for you too.
Have a good weekend and enjoy the good things in life.
Sarah
Thanks Maureen,
You are always so reassuring. I just hate seeing M going through so much. It wouldn’t be so bad if there seemed to be any positive results from all of this. We just have to hang on to the knowledge that the myeloma hasn’t progressed and would have done without treatment. He will get to SCT and maybe it won’t seem quite so bad when he’s had all this to deal with already.
It is so good to know that some of the good things we miss should be possible in the future. We have tickets for the Commonwealth Games but there’s no way we’re going. I might buy a TV for the bedroom instead so that M can watch it all even if he’s lying down. I said I would never have a TV in the bedroom but things change and I just want him to have as much pleasure in life as possible.
You’re right about faith. That is what keeps us going.
I hope you and Ian can enjoy the better weather and make up a bit for lost time by having some lovely days out and trips away. I’ve found that even the small things have taken on a new significance: a walk in the countryside can seem as good as a holiday and an hour or two in the sunny garden with a good book is my idea of a luxury.
Sarah x
Thanks Mavis and Megan,
Lovely to hear about your rainbow too Mavis.
I’ve been to PALS today and got the parking issue off my chest. Never thought about taking a cab, Megan, but that’s a really good idea.
M has C.Diff. He’s now in isolation and will be in for at least 10 days. This will certainly have an impact on the chemo and SCT plan, but for now the concern is to get this infection out of his system. I’m reassured that he is in the right place and not my sole responsibility for a while.
There’s a nice view from the window which lifts you beyond the hospital setting.
I hope all is well with you.
Sarah
Well, M got through the DT-PACE pulse without too many problems. He was very tired but there was no nausea of anything like that. He needed a blood transfusion afterwards but was discharged after that last Sunday. He saw his consultant on Tuesday and Friday (we get great care here!) and was neuropenic on Friday. Had to start the GCSF injections. Yesterday he was very fatigued in the morning and by early afternoon was running a temperature of 40.2 – seemed to come out of nowhere. We rang the hospital and, not surprisingly, I was told to take him straight there and he was admitted to the acute medical ward as there were no beds on the haematology/oncology unit.
It all got very scary as his temperature went up to 40.4 and then his blood pressure shot up, with his SATS going down. A flurry of doctors, iv antibiotics, fluids, paracetamol and oxygen stabilised things, but his temperature is still a bit high this morning. He was assessed by the HDU doctor but he decided that the AMU could provide appropriate care, with hourly obs through the night.
I eventually managed to leave him overnight but it was all very frightening. It came on so quickly.
How do others of you cope with looking out for signs of infection when you/your partner are/is neutropenic? The fever came on so suddenly and by then M was feeling so rough that he was unaware that he was ill. Had he been on his own, he probably would have just slept. I’m now feeling very insecure about leaving him when he comes home. I’m wondering about asking him to take his temperature 3 times a day, and organising a rota of people who will drop in and see him when I am at work. Obviously I need to discuss this with him and wouldn’t go ahead unless we reach an agreement, but this has really shaken me.
It might seem like a minor thing, but I am going to pursue this tomorrow: he had to be admitted through A&E. There is nowhere to park when the barrier-operated car park is full, as it was. There is no drop-off bay. I had to park in an ambulance bay, go and get a wheelchair (he can’t walk far owing to the spinal damage anyway) and then leave him in A&E waiting room while I moved the car to the main car park, having had one ambulance driver have a go at me, and a receptionist (not the nicer one who booked him in) tell me I had to move the car – before I had even given his details (he wasn’t in a state to do it himself). There is no drop-off bay, no blue badge bay – nothing. It was incredibly stressful on top of the issues that had taken us there. I think a visit to PALS is in order tomorrow.
On a more positive note, it’s a beautiful day and I’m going to try to get a bit of sunshine and walking before I go and sit with him this afternoon. Enjoy the sunshine . Living like this makes me more grateful for the good times – even the odd few minutes! 🙂
Thanks Andy, David and Tom,
Andy and Ceri’s experiences seem to sum a lot about myeloma treatment, in that something that doesn’t work for one person can be so successful in another. It’s really helpful to hear about what you’ve experienced.
My husband seems to be doing ok at the moment. He’s coming up to the end of the second full day of treatment and, although tired and a bit fed-up with having to go to the loo so often, he’s feeling reasonably well and is eating ok.
We do feel very lucky with the quality of the care. One of the specialist nurses even came in to check that I was ok today.
Thanks again for the positive input. Andy – I do agree: every day is indeed a gift and we need to find the good things in it.
Sarah
Hi Susie,
It’s there if you click the Information tab, look to the right-hand column and then click Myeloma UK publications list. You’ll find it near the bottom of the list and you can download it.
Hope you find it.
Sarah
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
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
