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Hi
I searched for this subject and came up with 1800 posts! I’m wondering if someone could give me some straight easy answers.
I now, eventually, have enough stem cells stored for 2 transplants and I have an appointment with specialist at Southampton General next Tuesday 25th March 2014 to arrange a date for the SCT.
Questions are, how do they administer the high dose chemo and what is it?
How long does this take? As in hours, days?
How do they give me my Stem cells?
What happens next?
I would really appreciate a reply to these questions.
Thanks John
Hi John, If you go into the Information section, click on Initial Treatment and scroll down to downloads there is a comprehensive guide called High Dose Therapy and ASCt that will answer all your questions and more. But I will quickly run through your questions (had mine in December and am now, would say, fully recovered from the process.
– The HDT standard is melphalan and is administered via your hickman line – which you will have in place beforehand. Prior to the HDT you have extra fluids administered via your line to help protect the kidneys. The melphalan doesn’t take too long – not talking hours but can’t remember how long exactly.
– Some hospitals then give a days break before the stem cells are returned – I had mine the next day but 24hrs after the melphalan. They brought a machine into the room with your frozen stem cells in and warmed them up then gave them back via the hickman (or central) line – takes about an hour.
– After this you just lay back and wait for them to grow new blood cells in the bone marrow – say 10 -14 days. You may have some growth injections (G-CSF) to assist the process. This waiting period is the time you will have little resistance to infection – hence being in isolation and you will feel pretty crappy – you’ll take various tablets like ant-viral and antibiotics to help your body and everyone will be watching for temperature spikes which may indicate infection but they treat it very quickly. When your counts are up enough you go home! Expect a stay in hospital between 2 – 4 weeks. I was told most people tend to go home nearing the 3 week mark but it all depends on your reactions. The info guide will tell you much more. The whole process isn’t pleasant but remember its only for a short period of time so is perfectly doable and quickly forgotten. I wouldn’t hesitate to do it again so it can’t be that bad.
Regards,
Rebecca
Good luck
Hi John
I am 8 weeks post transplant. I had a Hickman line put in before the stem cell collection and that was used for the chemo and the stem cells, plus the daily blood tests and blood transfusions, platelets and antibiotics you get given through the treatment.The high dose chemo I had at Hammersmith Hospital London was melphalan which I think is standard. I was admitted to hospital the day before the melphalan and stayed in for 14 days. The melphalan was administered over a short period of time but they do give you saline and anti nausea drugs with it. 2 days later they brought in the frozen stem cells, thawed them in the room then they were put in through the Hickman line or about 20 minutes I think….quite an anti climax really. You do become ill with nausea, diarrhoea and other gastro intestinal problems from the chemo. My worst problem was an ulcerated oesophagus which made it impossible to eat or drink for a few days….the nausea and vomiting didn’t help either! Because I couldn’t swallow I had to have several litres of saline drip as well. Luckily I didn’t get an infections and really all the side effects were quite manageable. I have to say that the staff at Hammersmith were fantastic! Since coming home I had some trouble with nausea and vomiting and had to keep taking Ondestron for a few weeks, but fatigue is a big issue. At first I was napping twice a day but now only once. Since the initial CDT treatment I do not sleep for more than 2 hours at a time at night which doesn’t help with the fatigue either. I still feel really spaced out and weak though. I am hoping to have a holiday in Ireland over Easter and then to return to work a few hours a day after Easter if the consultant agrees. 4 weeks post transplant, there was no paraprotein in my blood and my light chain ratio was normal, so fingers crossed I have a long remission. But any treatment for this disease is a
gamble I think.
Carol
Brilliant answers, just what I was looking for, thanks Carol and Rebecca.
I had a Hickman line fitted but it got infected so our local hospital St Richards removed it and kept me in while they hit me with antibiotics. Tuesday I had another line fitted in Southampton General, then straight up for 5 hours on the harvesting machine and we managed to get just enough stem cells for two transplants. The consultant likes 4 million stem cells, 2 for each transplant.
I have had all the tests, blood, kidney function using nuclear medicine! Pulmonary, heart ultrasonics, so all ready really.
At Southampton they have had problems with building work and flooding but I’m hoping that following next Tuesdays meeting with the specialist I might be in the following week for the transplant, or maybe I should take an overnight bag!
I was just a bit apprehensive wondering what happens next but I think your replies have allayed that apprehension.
Biggest problem I have at the moment is cold hands and feet and feeling like I’m walking on rocks! All this started with fractured vertebrae so I have spent a long time sitting around so my leg muscles have really wasted and I can barely walk even with a frame. Another problem to sort! I am a very positive person so I’m absolutely determined to get through this. By the way I’m 61 and want to get back to work.
Thanks again John
Hi John, I would ask at your consult about whether they’ll use all, or store, some stem cells. I also got 4 million collection which is the bare minimum for 2 transplants but Prof Roger Cook of Leeds ( a leading guy in the MM world) used them all so it would be better for me than using the bare amount – which makes sense. I queried some research I’d read that collection the 2nd time round for a transplant wasn’t as good and he disputed that and had “yet to be revealed” research” that showed no difference in collecting again further down the line.
with regards work they say 3 months and I guess I could go back to work now but have taken another 2 months off as I work in a big centre where everyone seems to have coughs and colds at the moment so am going back 1st June when winter illnesses are out of the way. When you have spent a long time isolating yourself from germs, shopping centres etc, I find its quite scary to go back into an “uncontrolled” environment. I am using the time to get my fitness levels back and waiting to enjoy a bit of nice weather. Not enjoying getting paid tho’!
Best wishes
Rebecca
Hi John
I must say I was lucky not having any vertebrae or kidney problems….but the myeloma gremlins did eat my collarbone, which is how I was diagnosed when it fractured as I alighted from the bath….nearly 1 year ago now. I do have some neuropathy in my toes from the thalidomide, but can still walk short distances OK -thank goodness. I hope they will offer you some physical therapy to get your legs into better condition. Everyone tells you you should walk while in hospital for the transplant, but as I had some sort of a cold virus, I was in isolation from day 1 and it was a bit difficult to do much walking around your bed! Even now after 8 weeks I really need to exercise more, but can’t seem to get myself motivated. I have just had a letter from my workplace today, notifying me that they are cutting my sick pay to half from this month, so I will see if the doctor will OK a phased return to work from 1 April. A bit earlier than I wanted, but I cannot pay all my expenses on a half salary. I am 64 years old so plan to retire in August this year and go back to Australia anyway.
Carol
Good Morning
An update!
Went to Southampton General this Tuesday, had blood tests and a bone marrow biopsy. Had the appointment with the consultant, spent a whole hour with him and went through everything with him. We had typed out a list of questions and my wife, a Judith, took notes during the appointment. I am being admitted this Sunday, as long as there is a bed available. We were shown around the ward and there was still building work underway but it looked well underway. The room we looked in had a large TV, DVD player, free WIFI, hopefully I get that one!
On the Sunday they let me settle in the start giving me fluids, on the Monday they administer me with Melphalan, which should only take an hour. They then leave me for a day and then give me back my 2 million of my Stem Cells back. He explained about sickness etc and I should be expected to stay in for 3-4 weeks. Visitors anytime but no children and no one with colds etc.
All much the same as you told me in the posts above really. Looking forward to getting it underway. (Actually correctly once it’s finished!)
As I say there will be WIFI so I will keep you updated.
Thanks John
Wishing you all the best for your SCT, John.
I hope all goes as well as possible and that you can look beyond it to a time of recovery when there are nice long days and better weather.
Best wishes,
Sarah
Just a bit more to add the above. I asked about the pain in my legs and feet and the tingling and numbness in my hands and the feeling of cold in my hands and feet. He told me this this was due to the Velcade given to me weeks ago. Apparently the effects of the Velcade ‘kicks in’ after a couple of weeks and that’s what I’m experiencing now.
He also told me he was going to give me Velcade with the Melphane.
John
Thanks Sal
We must have both been typing at the same time!
John
Hi John,
Good luck with it, it’s a strange time now this waiting to go in it’s almost like the excitement and trepidation of going on holiday somewhere new. I was more excited, than anxious, hoping that the SCT would do the trick and I’d be drug free – concentrate on the end goal. When I was in I had in mind I’d be in 16 days (was in 18)and each day I would cross another day off my pad and think one day closer to home. I think I saw it as a short stay in jail and no matter how crappy I felt I knew that when I crossed that day off my calendar I was 1 step closer to feeling better and going home. Nothing is that bad when you focus on it being for a short period of time and when you start picking up and know you’re over the worse it’s so much easier. When home I quickly forgot about it as soon as I felt a bit better, I never dwelled on it as far as I’m concerned it was done and dusted, but unfortunately, my poor husband still talks about that time and I think is/was quite traumatised by the whole experience. I think it is very hard for family, I only allowed my husband to visit and I spoke to my family on the phone with cheery updates. Make sure your wife is well supported as she will need it as much, if not more, than you!
good luck,
Rebecca
Hi John
Best of luck with the transplant. Rebecca is right about your wife finding it difficult. I had such good care from the staff at Hammersmith Hospital that I only asked my husband to come to visit every 2 or 3 days. It upset him to see me ill and I found it easier to manage the few days of nausea etc without having to worry about him as well! But everyone is different I guess and you may need your wife there for support.
Carol
Hi Johno, not replied to this post but can thoroughly endorse everything Rebecca and Carol have said. I too counted the days down and set stage objectives during my stay in hospital. I was given a Gym bike in the room as well, I’m in Germany but I believe a number of UK hospitals do the same. They are very concerned about lack of exercise and believe exercise aids recovery. I was also given a lung exerciser because that apparently helps to reduce the risk of Pneumonia I believe. Like Rebecca, I treated it as a stay in jail. I referred to the nurses as Wardens, the Doctors were the senior Wardens and the caterers/cleaners as privileged prisoners. My solitary confinement was for just under 3 weeks so not so bad. Couldn’t get used to the Wardens checking on me several times a night and giving me more antibiotics/fluids/nutrition in the middle of the night.
Anyway, as everyone says it’s doable. All the best,
Richard
Hi Rebecca and Carol
Hi
Our local specialist unit is in the Fernhurst Unit at St Richards Hospital which is in Chichester where we live, 5 minutes drive away. Southampton General where the SCT is taking place is 1 to 2 hours away depending on the traffic, so a long drive each way for my wife Judith.
We are talking about her visiting every other day, but we will play it by ear!
Judith has seen me very Ill with this disease before as my myeloma has been quite aggressive and I was treated with very powerful chemo at St Richards a number of times and the side effects were not good. Hopefully the side effects of the coming treatment are no worse! However I didn’t have an sickness and diareah before and from what I have read it is pretty gaurenteed this time. As I’ve said it will be a question of playing it by ear.
We have both read your replies intently and thank all of you for your input and time. If you think of any other advise please don’t hesitate to reply again.
Thanks John
Hi John, my husband only came once a week at weekends due to the travel, work and daughter. Even then after about 40 minutes it was too much for me – not enough energy to talk much etc and so I found it just as good, if not better, to keep in touch by phone each day for short spells when I felt up to it/awake. You can also Skype but I never bothered. It’s quite a trek for your wife and often phone calls can put their minds at rest just as well. I felt much happier that way because no matter how grotty you feel its instinctive to put a brave face on it and this is often very tiring, was happy to stay curled up in bed. Unlike Richard I felt too nauseous to move most of the time so only moved from bed to bathroom back to bed for the whole of my stay!
Rebecca
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