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Hello!
My husband is due to have his stem cell harvest 21/22 July. We were warned yesterday by one of the nurses that some people have to go in for more than 2 days – even each day for a week – before enough stem cells are collected. Has this happened to any of you?
As the hospital where he is to have the harvest is over an hour’s drive away, and M hasn’t been in the car for more than 15 mins at a time since Christmas, I’m a bit concerned about the travelling. He has a lumbar spine fracture which makes sitting upright for any length of time quite uncomfortable.
I’ve booked us into the Travelodge near the hospital (lucky to get accessible room with grab handles etc) for the night before the harvest and the night between the two days they’ve given us. This means that we won’t have the time pressure on the way there that we would have if we travelled first thing on a Monday morning, and we will only do the return journey once. Obviously if they want him for more than 2 days, we’ll have to see what we can get at the last minute or do the whole journey again. I was just wondering how common it is to have to go for more than 2 days.
Does anyone have any tips for the stem cell harvest? Is there anything we should take to make it more comfortable? How did you feel on the evening of the first day?
I know this is really the calm before the storm, although M is just finishing his 3rd cycle of DT-PACE as an in-patient, and feeling grotty, so the storm isn’t really that far away. He had his apheresis line fitted on Wednesday and is finding it quite uncomfortable. The picc line was certainly the easier option. He’s had to inject GCSF before and will start that again on Sunday. I’m just hoping he can avoid temperature spikes and infections in the next week as he’ll probably be neutropenic after this chemo.
His consultant wants to get him in as soon as he can after the harvest and we’ve been told he could be in for up to 5 weeks. I don’t think we’re going to have the problem of waiting lists that some of you have had, as our hospital only does 8-10 SCTs a year.
I’m grateful to those of you who’ve posted about SCTs as it helps to bring a bit of reality to what is going to happen. We can fill in the gaps of the “official” version and be a bit more prepared. My husband doesn’t read this forum or the site, but does appreciate snippets of information sometimes.
Thanks,
Sarah
Hi Sarah
I had my SC harvest in November last year. I had it at Kings London about 1 hour each way from my house in Kent. Mine only took 2 days, but on the 1st day they had only collected a small proportion of the cells but the next day with help from the nurse they managed to get 8 million which is the requirement. The machine I had was returning my cells back with the blood.
On the first day your husband will have a blood test which will determine if he has sufficient SC to harvest. If not you will be sent away with more injections. He will have a tube to each arm so will have to sit still for around 7 hours. It is a painless procedure and apart from the sitting still and not being able to go to the loo not unpleasant. I felt no ill effects and was fine afterwards, just glad to go to the loo. 🙂 :-).
I had a Hickman line fitted, the fitting was not pleasant but I soon got used to it and I gladly showed anyone who asked. I had to wait 5 weeks for a bed at Kings for my SCT and I was only in for 16 days.
Hope this helps and his SC harvest, SCT goes well. You will get through it and on the other side looking back it wasn’t that bad. I would do it all again tomorrow no problem.
Best Wishes David
Hi Sarah, My harvest took 2 days in that I went the 1st day had a blood test told 1hr later sc’c not ready. Next day I went and the harvest was done in about 3 – 4 hrs. I think it’s the timing of the injections that will have you done and dusted in 1 day or waiting around – I certainly didn’t have many – not as many as it says in the booklet – about half that – had I started a day earlier with them I would have been done in 1 day. Totally a non-event and in the great scheme of thing probably the most pleasant procedure I’ve had. Would add you can get really bad pains in chest/back – large bone areas which is a good sign that the little critters are jam packed and ready to come out. I only experienced it the night before I had sufficient for harvesting. Pains were horrible, pulsating, a bit labour pains. Paracatemol did take the edge off, was told at harvesting that some people only got relief from them by being on all fours – again like labour! That was the worst bit about it and am told some people, if they weren’t forewarned – thought they were having a heart attack with the chest pains. I was told not to worry if I didn’t get any pain as you don’t have to experience it but when I did get them they said that’s a good sign that you are ready – so just be forewarned of it. I never had it passing through both arms but had a femoral line put in for it – tube in the groin – so arms were free. Felt really good when I finished it as tho’ I’d passed an exam and got a decent grade and it was one step closer. Happy harvesting!
Rebecca
Thanks very much David and Rebecca,
I think I’m more worried about the journey than the harvest – but of course I only have to drive! The roads aren’t that great, so I’m glad we can take it steadily.
My husband has had GCSF before, so has had some experience of the aches and pains. No-one warned him beforehand and he was quite worried that he had more bone damage. He starts the GCSF tomorrow and the harvest is a week on Monday. I’ve just brought him home from the hospital with 4 bags full of drugs and build-up drinks.
Thanks for sharing your experience. It is always good to have the reality alongside the theory. I’m really pleased you’re both doing so well.
Sarah
Dear Sarah
I had stem cell harvesting 2 weeks ago. I was told to expect two days of collection but fortunately they got all they needed on Day 1, in a 4 hour session. This was at the Oxford JR hospital.
The worst part of the whole process was in the week previously. First the cyclophosphamide they gave me on Day 1 of the preparation made me feel pretty listless and low for two days. Then 48 hours before the actual harvesting ( on Day 10 of the procedure ) I started to get a pulsing pain in my back. They had warned that this was a possible side effect and a “good sign” as it was caused by the pressure of the newly created cells ( I had been injecting myself with Growth factor all week). I took pain killers ( paracetamol and codeine) and after 24 hours they eventually stopped the pain altogether.
I was connected up to the stem cell extraction machine through a line in each arm. I was in a reclining chair and the nurses kindly arranged pillows so that I could read a book, eat and drink etc. So for me the harvesting was the easiest part of the whole procedure. Hope this helps and that things go well.
Mike
Thanks Mike
Well done on a successful and speedy harvest. We’re going to the JR too, so it’s extra helpful to know what to expect there. Do we need to take food and drink, or will they provide my husband with something? It’s different wherever you go. If you sit down for more than a couple of minutes in the Day Therapy Centre in Swindon, where he has most of his treatment, a volunteer offers a cup of tea and sandwiches. Where are you having your transplant?
My husband spent 10 days in the Trauma Unit there last year for his first spinal op, had a week in the Nuffield Orthopaedic and 5 weeks of radiotherapy in the Churchill, so we got to know the Oxford hospitals quite well. He didn’t have the lower spinal damage at the time, though, so travelling wasn’t so bad.
He’s just had a 3rd cycle of DT-PACE – the C is cyclophosphamide, so it’s impossible to know which of the drugs is responsible for his general grottiness at the moment.
Oops – accidentally posted before I completed the message.
Did they use cannulas in your arms? M has an apheresis line (like a Hickman) in his chest now and it was put in specifically for the purpose of harvesting the stem cells. Until last Weds he had a picc line, but that’s no good for a harvest, so they interrupted his 4-day chemo (half bags had been made up to make this possible) and whisked him off to theatre.
Rebecca mentioned the pain, so it’s worth knowing about and being prepared.
We’re not having the best of times at the moment as he fainted and had a fall last night. I had to call out the paramedics as I was afraid to move him with the spinal damage – in case he had caused more. He’s ok-ish now but my stress levels have risen considerably.
Thanks again for your info. It helps a lot.
Hoping that your transplant goes very well indeed and gives you a long and deep remission.
Sarah
Sarah
Re food etc. The nurses brought me tea and biscuits. I don’t know if they could have rustled up a sandwich but my wife went and got one at one of the JR hospital cafes. As you say it varies from place to place. In the Churchill Outpatients , a trolley comes round with food and drink. They did put canulas in my arms. I’m having my SCT at the Churchill ; I’m pretty familiar with the place by now !
Best of luck with the harvesting.
Mike
Hi Mikex,
My husband is due to start the Harvesting Process 28th July at the JR in Oxford then like you we are over to the Churchill for SCT early September when are you having yours done?
Dear Wifeof
Week beginning 28th July. I have spent the last week in “work-up ” with a bone marrow biopsy, lung and heart tests and blood tests. If all are OK then I get the green light next week.
Have lost my appetite and taking a lot of Complan drinks with milk to try and keep strength up.
Mike
Hi Mike,
That weeks going to be a big week for both of you. Lee has his cyclophosphamide priming that day. If you don’t mind me asking what has caused the loss of appetite? Was it the priming? My husband is 55 do you mind me asking how old you are.
You never know you could of been sat next to each other in the day treatment room or in the clinic. It’s a small world
hope it all goes well for you, it would be great to hear how you are doing.
good luck
Suzi
Suzi
I don’t know why I’ve lost my appetite. I suppose the dose of cyclophosphamide is the prime suspect; that was four weeks ago. I’m 62.
I hope your harvesting goes well.
Mike
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