Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
if anyone is reading this could give me some advice please.
i have been on chemo for multiple myeloma since feb this year, levels have dropped rapidly which I’m pleased about so they are pressing forward with stem cell transplantation.
i have been injecting myself 3 times a day with a strong dose of zarzio which promotes white blood cells ready for harvesting on Monday next week. I’m having to do 3 jabs a day as it’s a high dose of 1080mcg.
the question I’m asking to you all is this? The nurse advised me that there would be some bone pain with these and I have a very high pain threshold but before I call an ambulance, I desperately need to some advice before I waste their time.
I am absolutely crippled in pain and stiff to point I can’t move, every move is agony. Is this correct?. I’ve got 3 more days of these jabs and I don’t think I can do it. The pain is unbearable. I’m a 44 male and I feel like crying with the pain.
I'm not sure if I can take any pain killers because it may affect it.
Anyhelp would be great. Things like this always happen when you can’t call the chemo ward for advice at weekends
Only just woken up, how is the pain now?
I must say I found the pain after the injections excruciating, especially in my lower back. They gave me strong painkillers when I was having them in hospital to try to boost the WBC after SCT, so I’m assuming it’s ok to take them now. If in doubt, always call up the medical team, but I will say I found this part of the process incredibly painful. If it’s any comfort, it’s a good sign that you’re producing loads of cells which will be good for the harvest.
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Many thanks for your reply, you are so right omg the nurse said I'd get a bit of bone pain. I've never experienced any thing like it.
Johnny was amazing, she replied to me at 2 in the morning bless her. I took her advice and I was.about to go to the hospital but I found a number and called it. Eventually a doctor called me back and explained that I could take my liquid morphine for the pain.
I've been using this for the pain I already have with the tumour in my hip caused by MM.
I'd been laying there in.agony for hours. My consultant had drummed it into me not to take anything else unless he given it to me.not even a vitamin tablet. I'd been afraid to take any painkiller as I didn't want to affect the blood cell thing.
I'm so glad you confirmed that's is bad too,I can relax a bit now.
I knew it wouldnt be pleasant but when it's so bad you begin thinking, hold on this can't be quite right
Thank you both for replying. Message to anyone else getting ready for stem cell good luck at this point
How did the harvesting go? I hope it went really well and you got the amount of cells you need.
Thanks for the message, yeah all went well. Collected well over 6 million on first day but my consultant put me down to collect at least 3 transplants worth so had to attend the second day. Only did around 4 hours day two so not so bad.
Only real pain was the needles after that it was all ok. Don’t feel so good today to be honest, feel a little sick but that could be anything really.
Now got 3 weeks off before the real sickness and putting them back in again. After that is the worry of reoccurrence. It’s been a long road and hope I don’t have to repeat this for a while.
Met a friend too who going in day before me for stem cell return. First time I’ve actually met anyone face to face with what we’ve got. Keeping fingers and toes crossed.
hope you are keeping well yourself
That’s really good to hear re: the harvesting - I suspected you would have a good count as experience tells me the greater the pain the more the marrow is being flooded. I didn’t like the harvesting needles either - they were big and fat when I did it, but I didn’t want to tell you beforehand! I remember feeling a bit queasy and light-headed after the harvesting, so if you’re feeling that, I think it can be normal - I remember feeling ok again after a day or two.
It’s good you have a bit of a break now - time to relax and enjoy yourself as best you can before you have to go back in. If you would find it useful, there is a dedicated part of the forum just for stem cell transplants, so please feel free to pop over there, you may come across someone doing it at the exact same time as you - Stem Cell Transplants for Blood Cancers - Forum. They’ll be people doing allos as well as autos, so not all of it will be relevant, but you may find it helpful to connect with others who are on the same timeline as you.
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