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Please could someone tell me about their experience of this. How was the drug administered? How often and by whom?
I’m on week 11 of my induction chemo and am part of the RADAR XV trial.
Hi. I have recently had a stem cell transplant. Been out of hospital just over a week. With regard to the stem cell mobilisation, it started about 6 weeks after the end of my 4 months DVTD chemo induction treatment. I was due to go to Freeman Hospital in Newcastle as a day patient on Monday 15th and Tuesday 16th April. The GCSF injections to mobilise the stem cells began on the Thursday before and were administered once a day on the Thursday, Friday, Saturday and Sunday. I was given the option of doing them myself (which I didn’t fancy) or having a district nurse visit every day (which meant being stuck in waiting). I have a friend who is a retired nurse so she agreed to do them and I went to her house every morning. My local haematology department gave me all the syringes, vials, sharps box etc, enough for 7 days (I was to take the remaining 3 days stuff to Freeman on the Monday for them to use as needed). My local haematology suggested I do the injections on a night. However, Freeman hospital said morning was better because they should be done at the same time every day and they would want to give me another one on the
Monday morning when I arrived and subsequent days if needed. The only side effect I had from the injections was back ache, particularly on day 3. The harvesting went reasonable well. First day I was hooked up to the machine for 5 hours so I was feeling a bit uncomfortable and desperate for a wee by the end of it
2nd day only 2 hours. My friend came with me to keep me company because it’s a bit of a boring process and difficult to move your arms without setting the machine off beeping. So my friend helped me practically, including feeding me sandwiches! They harvested enough cells for only one transplant. Ideally they would have liked enough to save for a possible second transplant in the future. Hope that helps and best wishes on your journey. I am glad to be on the other side of the transplant and doing well so far. X
Hi. Thanks for that a really full explanation.
It would be good to hear how your stem cell transplant experience was too but as you’ve only been home a week… perhaps when you’re feeling up to it! Reading on here it’s obvious that experiences vary widely but all the very best with your recuperation. Glad everything had gone well so far. x
I’m happy to talk about the stem cell transplant. On the whole it was not as bad as a expected it to be. I was in hospital for 2 weeks and one day. I went into hospital on a Tuesday and they took me straight to the day unit for a high dose of Melphalan chemo. Fluids were administered for 3 hours before but the chemo drip only lasted 30 minutes. For about 15 minutes before, the half an hour during, and 15 minutes afterwards I had to suck ice pops! This reduces the chances of getting mucositis (mouth sores). It worked pretty well. I did get very mild mucositis but really just 2 small sore patches in my mouth – noting worse than you might occasionally get anyway. I used mouth washes after every meal. By the Thursday, the chemo is out of your system, so they put your stem cells back in. This took about an hour and a half and was simply through a drip into a canula. They brought the bags of cells one at a time – about 5 or 6 I think.
I felt pretty good for a few days. The side effects are delayed. Initially my worst problem was feeling stir crazy in hospital. Gradually you start to feel a little less well as your cell counts drop, but to start with it was mainly diarrhoea (manageable) and losing my appetite. Having started off eating well from the hospital menu I got so that I couldn’t face a lot of the food and ended up having lots of plain things like jacket potato, or mashed potato and peas. The ward had snacks you could ask for at any time like cheese and crackers, pots of ambrosia rice and custard and these are the kind of thinks I could face. Little and often. My worst two days were about a week after the stem cells were transplanted back. On the Thursday and Friday I just wanted to sleep all day. The Friday was the only day I didn’t get showered and dressed. I had liquid diarrhoea and couldn’t keep food down. My neutrophils and white blood cells fell to zero, so no protection from infection and I did get sepsis as they warned me I would. That doesn’t have to feel as scary as it sounds. They know it’s going to happen and they are ready for it and on it straight away. They put me on IV antibiotics straight away and located the source of infection quickly. I wouldn’t have known I had sepsis – just felt like flue, sickness and diarrhoea. By the Saturday I already felt well and only improved after that. By the Tuesday they were ready to send me home. My neutrophils were back in range, although all other cell counts were still under, and I was infection free. I had been told that I would probably need a blood transfusion and a platelet transfusion, but my Hemoglobin and platelets didn’t go low enough for me to need that. So really only 2 particularly rough days and once you’ve felt poorly and then start having good days you feel euphoric!
I was told my hair would start falling out 10 to 12 days after the chemo and that was about right. One evening my scalp suddenly felt hot and sensitive and the next day I could see lots of hair on my pillow and could just pull clumps out. The next day I asked them to shave my hair off rather than wait for it to fall out. I’m not sure this was the right thing to do though because I hadn’t realised how uncomfortable the stubble would be and it takes a while for it to fall out (I still have quite a lot of stubble left eve now). I wear a sleep cap at night but it’s still prickly and a bit painful rubbing on the pillow. If I had to do it again I think I’d say cut it short, but not shaved and wait for it to fall out naturally so that the hair is still soft. You can still cover it up with hats / scarves if it’s a bit unsightly.
I was overjoyed to be back home afterwards and appreciated every small pleasure. I live on my own and my consultant advised I should have a friend come and stay with me for a few days to a week as I might find it an effort to do normal things like dress and shower. I didn’t find that to be the case but my best friend took a week off and stayed with me which gave me peace of mind, and we had a lovely time. I could look after myself and sort my washing out. Even did a bit of very easy gardening with my friend’s help but it was useful to have her there to help me with some of the heavier work. My heart rate was quite high when I came out and doing some jobs raised it to the level I’d normally get from doing my zumba class! My heart rate is coming down gradually. I feel well. The main issue is fatigue and they say that will last for 2 or 3 months. In my case it’s manageable. I feel pretty well in the morning, am flagging my lunch time, so took the decision to go to bed every afternoon, rest and read and sleep if I needed to. I have slept every afternoon for 1 to 2 hours and will continue to do this until I no longer need to. My friend went home after a week and my cat came back 2 days later so life is getting back to normal and I’m managing on my own. I was advised to treat the first 2 or 3 weeks like a lockdown. After that I can have visitors, but no-one with coughs and colds etc. I won’t be going to busy public places for about 3 months or until advised it’s OK by my haematology team. I am going to haematology once a week for blood tests and they book me in early on the morning when there aren’t many other people in and the unit has just been cleaned.
Sorry that’s quite long and detailed but I hope it helps, although I know everyone’s body will respond differently depending on age and other conditions (I’m 60 , relatively fit, no other significant medical issues and no damage already caused by the Myeloma). Overall I am pleased with how it went and relieved I feel so much better than expected. There have also been unexpected moments of joy and blessings along the way! I’m so glad to be on the other side of the transplant, which has been looming for so long and glad to be in recovery. Taking one stage at a time and determined to enjoy the next few months of rest rather than be unhappy about the relative isolation. Covid has prepared us well for that!
Take care and best wishes for the future. XXX
Hi
Thanks so much for this. Extremely reassuring.
Do hope that you are continuing to feel well and enjoying the post SCT euphoria.
I’ve just had my stem cell harvest. My husband was with me and like you I was hooked up for 5 hours! I had an amazing result of 5.2 The only issue I had was a calcium crash part way through. I started feeling hot and faint. Obs were clear. So you lie there thinking I feel really not right but am I making a fuss? The nurse gave me 2 calcium tablets to suck and as if by magic I immediately felt better.
I have a date for reinfusion of 2nd August. They’re avoiding my 60th birthday which is at the end of July..Bless them. Our daughter, Sophie, who is 20 has arranged for a coffee and cake sale at my church to raise money for Myeloma UK and I didn’t want to miss that.
We live in Torquay but the harvesting and Stem cell reinfusion is done at Derriford hospital in Plymouth. So I will become an inpatient at Torbay and given the Menphalan (?) there then transported to Derriford the following day for reinfusion.
The only thing I am really worried about is being sick as I really hate it. But you have reassured me that although this is more than likely to happen it doesn’t go on for ever! So thanks for that.
Really appreciate your response. I’ll let you know how it all goes.
Very best wishes
Sara
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