This topic contains 29 replies, has 9 voices, and was last updated by 
Sal 9 years, 10 months ago.
Hi Sal
I’ve had DTPace. I was stuck in hospital for the 4 days with all the infusions going on 24/7 You don’t get much sleep with the alarms going off all the time! And going to the loo is an experience and requires a lot of dexterity. Don’t know his you’d manage if you were in a rush!
I only had one cycle as it was deemed not to have worked. I had a BMB and although most of my bone marrow had been wiped out the PPs were still in significant quantities. The only side effect I recall was not needing to shave for a few months afterwards.
I can only recall one other on here going through DTPace and it was a success for him and he went on to SCT.
I hope your husband has a good result with it too.
I wouldn’t worry to much about my lack of success because since diagnosis in Oct 2011 I’ve been through nearly every drug in the myeloma armoury and only one drug has worked and that only got my PPs down to 12 for one cycle the rest of the time they were around 18-20
Hope everything goes to plan.
Every day is a gift
Andy x
WoW Sarah
What a photo well done you its a great one I can tell you.
Good Luck to M now its on the go, its tiring in hospital as it is let alone the regime that M is going through and am sure you all know I wish him luck and few side effects on his road to remission
Love Tom Onwards and upwards xx
Hi Sarah
My partner Ceri had DT-PACE a couple of years ago immediately before her 2nd SCT when the standard treatments struggled to get her Myeloma under control after her first relapse.
DT-PACE woked wonders for Ceri, so much so that she could go straight into her SCT after the 2 cycles and she’s already had a longer remission this time around and she has been in good health since.
Ceri was pretty knocked out by the treatment and after comming home from hospital she had to rest up and watch out for infections as the treatment gives the bloods a battering. She only really started to feel better when it was time to go in for the second cycle to go through it all again.
Although it didn’t feel like it at the time, the DT-PACE treatment was definatly worth it for Ceri as she hasn’t looked back since.
Hope all goes well.
Best wishes
David
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
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! 🙂
Hi Sarah
Do hope M is coping with the drastic treatment as well as can be expected.
Your story of the rainbow reminded me that, when I was first taken to hospital, prior to MM diagnosis, I saw a rainbow, and subsequently, as I was being wheeled down to theatre to have my plasmacytoma removed from my spine ( and I’d been told it could go either way,) there was a picture of a rainbow on the wall outside the theatre. I took it as a sign and I have not been disappointed.
Love to you both.
Mavis x
Hi Sarah,
I am glad to hear the DT Pace went smoothly but so sorry to hear M’s temperature spiked and he had to be admitted again. It sounds very scary and I do know what you mean about the parking. When Phil’s temperature spiked we got a cab to the hospital and I think the cab driver was terrified when he realised how unwell Phil was so he drove into the hospital through the ambulance only entry and dropped us off in the ambulance bay. I was lucky as we then just had to get out and leave him to it but I know quite a few security guards were unhappy with what he did. But what can you do? Phil would not have been able to walk from the visitors parking area.
We took Phil’s temperature three times a day while he was on treatment even when he was not neutropenic. It actually took quite a while after his stem cell transplant before we stopped checking his temperature at least once a day. Even now, if Phil feels even a little off I take his temperature just to be sure. We didn’t have anyone pop in to check on Phil but he had the phone numbers of numerous neighbours who he could call if he felt unwell while I was at work. It is hard going off to work and leaving them when you feel like you should be at home but you and M should discuss what will work best for you, if someone can pop in it may give you peace of mind until M is feeling a bit better.
The sunshine yesterday was lovely and it is set to be another lovely day today 🙂
Megan
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
Hi Sarah
It must feel like M is going through a really rough time, but there is light at the end of the tunnel. My hubby Ian had sepsis, c diff and mrsa when he was in hospital and in isolation. We both were scared and anxious most of the time, as he also couldn’t walk. Roll on one year and 4 months, he is walking and we have had short breaks away. Back on chemotherapy but doing well, so it is doable
He takes his temperature at least 3 times a day, we have a braun thermometer.
I also have my faith to help me.
Love Maureen
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
I have just been through one round of DT-PACE and am due to start another round on Wednesday. I am being treated at UCLH. After the first round I was requested to book into Ambulatory care as I live more than 40 minutes from the hospital. I thought they were being rather over cautious booking me in to the NHS hotel just in case I got an infection but when I arrived I found out I already had a temperature of 39.5 so was admitted straight to the ward. I ended up staying in hospital for eight days as the first lot of antibiotics didn’t seem to be bringing the temperature down and they couldn’t find the route of the infection. I then had my pic line removed and changed antibiotics which seemed to do the trick. I was discharged on Friday 16th May. I have since been a bit obsessed with taking my temperature and am quite worried about going through the whole process again prior to my stem cell transplant. I have been feeling very sick and extremely fatigued but some of that could be due to the radiation I have had to reduce the mass on my spine.
Good luck to you and your husband. At what hospital is he receiving treatment?
Fingers crossed this will all be worth while and give us many years of remission.
Deborah
http://www.mymyelomajourney.wordpress.com
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
For the first time in over a year we have some progress and some good news. M has had 2 cycles of DT-PACE and is due to start a 3rd next week. He had a bone marrow biopsy last week and this afternoon his consultant told him that there were no myeloma cells in his bone marrow. Myeloma cells were over 50% in May, the week before his first DT-PACE cycle. The lab results also show no abnormal plasma cells. His light chains are down in the 20s and PPs down to 11 – although they have never been over the mid-20s.
It’s so hard to take in positive news because, from the time his solitary plasmacytoma was diagnosed, it’s all been downhill, with the myeloma diagnosis in January.
Everything is prefaced with a big IF at the moment, but the plan is to admit him over the weekend to start chemo on Monday, interrupt chemo to fit a Hickman line (he currently has a picc) when they can get him to theatres, and hopefully get him to the scheduled stem cell harvest 21/22 July.
DT-PACE is hard on your body and he has felt quite rough at times. He lost his hair but that’s a minor thing compared with losing about 5 inches in height, owing to vertebral collapse in his neck and lumbar spine, and about 5 stones in weight (some of which needed to be lost!). Neutropenic sepsis, with c.diff and e.coli wasn’t fun and we can do without a repeat of that. However, now it seems as though something is happening and it’s a case of onwards and upwards!
He also says there are worse times to be stuck in hospital than when the World Cup and the Tour de France are on tv!
I’m having a celebratory glass of wine this evening – last chance before I’m on-call to take M to the hospital when the call comes to say a bed is waiting.
Hoping for positive progress for others of you too.
Sarah
Hi Sarah
Glad to hear M is making progress and DTPACE has worked. Keep me updated on SCT.
Hubby on velcade and meeting with consultant on Monday. Fingers crossed FLC going down.
Just returning from a lovely holiday in Cornwall.
Never give up hope and keep praying.
Maureen x
Thanks Maureen,
So pleased to hear you’ve had a holiday – and you’re leaving Cornwall before the worst of the rain, I think.
Will be praying for Ian and for you on Monday.
Have a good weekend.
Sarah x
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