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Hi to you all.
Just wondered if anyone can help answer any questions??.
Today is day 10.. Day 1 being day that Mums stem cells were fed back to her. Her neutrophils are still showing zero.. They have been zero for 2 days. She has slept constantly since Wednesday. She has sickness and the unfortunate other side effect diaorrhea .. She has also not eaten since Monday, today they tried protein shakes. She has had the odd bit of hallucinating when some drugs are administered. She is crying when she is awake, saying she can't carry on anymore.. It's so horrid to see.
My questions are and I know how individual a disease this is, but roughly how long until we see an up in the neutrophils…
Also, when do they discharge, as the nurses are saying it's usually a 14 day turnaround on the room and she could be out Tues if her count comes up tomorrow? It seems a bit soon… It's worrying when we see her like this..
I'm worrying that this count isn't coming up.
Sorry to ask questions, I'm going to try and ask them tomorrow but the nurses seem sooo busy and I don't like to bother them.
Kind regards to all
Lots of love
Only me
Xxx
Hi only me
Sorry, can't answer the question about SCT, but wanted to send my best wishes to your Mum – she is having a rough time. From what I hear from others, the end to these horrible reactions do come to an end.
Hang in there – good job your Mum has you fighting for her.
Love to you both.
Mavis
Hi Only Me
My count went to 0 at 6 days after stem cell return and stayed down for further 6 days before going to 0.4. I went home 2 days later. It's better at home.
And i could not bear to see my family when I was in hospital……. I was sooooo ill i knew it upset them to see me and that made me feel dreadful for putting them through it. I know it's not my fault but you still feel guilty:-S
Just hang on in there, keep everything crossed and pray as hard as you can, and let us know how she gets on:-) And when she goes home
Love Helen
Hi Only me
Just to try and give you a little bit of support,i cannot help you as Slim has not had SCT,but am posting to say people who have been in your mums position,say it,s worth it in the end so hang in there,this post should take it back to top and more people might see it and reply to you.
Good Luck Eve
Yes, it is about 6 days if my memory serves me right. 0.5 is the go home point for neutrophils I believe but do not forget the rest of the blood measurements have to be correct as well such as White Blood Cell count.
It is a difficult time; I know what you and your mum are going through, having been there and bought the t shirt myself. Just hang on in there it will come good I am sure.
I lived on Protein shakes, made with milk, jelly, ice cream and bananas or tangerines for some days. My throat was so bad I could not get anything else down. Sickness and diarrhoea are almost par for the course although I was lucky and did not suffer too much from either.
12 months since my SCT and I am leading a near normal life. I only take antibiotics at the weekends and of course my bone strengtheners Loron every night. So it is worth it.
Kindest regards ? Vasbyte
Hi only me.
I hope that your mum is hanging in there. My neutrophils dropped to zero at day 7 and returned at day 13. I was discharged on day 14. Diaorrhea, sickness, loss of appetite, hair loss, etc are all par for the course. I found all I could eat was soup and tinned fruit – everything else tasted like nothing on earth. I just pray that you mother is coming through these dark days now. She will soon be home and recovering. 6 weeks on, I was out walking my dogs and building my strength back again. I am sure that your mum will soon be up and about.
Roger
Hi Only Me,
Sorry your Mum is feeling so low but although at the time it's horrible, it does improve. I had my STC 9 weeks ago and like your mum, my neutrofils zeroed at day 6. On day 7 I was readmitted to hospital with a grumbling temperature(Norwich does STC's with as much time at home as they can). By day 9 my mouth and every thing South of it were awful. Paracetamol worked quite well but lasted two hours leaving a four hour wait in pain. Oramorph was useless. During that night I woke up, then realised that I'd been asleep, then realised that it didn't hurt quite as much. within 24 hours I'd stopped taking painkillers. One of the consultants told me later about a study where they had taken mouth swabs from STC patients and they had detected neutrofils some time before they were found in their blood samples. It seems that neutrofils go first to where they are most needed. Later that day tiny amounts showed in my blood and they sent me home! Yippee!
I'm sorry to burden you with my boring tale but I hope that it illustrates how quickly misery can abate. I hope that this has already happened for your Mum or will happen very soon. Once it does and the tubes are out and her energy gradually returns. as it has for me, it will seem just another memory.
Best wishes to your Mum and to you too.
Andy
Hi Only me
My dad went in for his SCT yesterday, and he starts his chemo today, so we are only a little way behind you. I popped on here to have a bit of a cath up on the reality of SCT, as i'd rather expect the wosrt. I think my mum is unprepared for how tough it will be on dad.
I just wanted to say hang in there, and i pray that your mum starts to feel a bit better each day and her levels come up.
Sending you lots of positiveness
Vicki xxxxxx
Thank you to you all and your kind replies.
mums count started to rise on Monday.0.2 then yesterday 0.3 what a difference….
I am very grateful for all your replies. This forum, has helped me and my family so much. I know some things I didn't want to read, but rather read and be prepared, than be 'in the dark' and wonder whether all is well!!!
She was supposed to be discharged today, but her potassium levels dropped, altho she felt ok, they weren't right, so she is staying in at Notts for another night, but rather everything was ok than otherwise. The team at Notts have been fantastic and I hope the story is the same with everyone else.
I can't thank the staff enough for their care and expertise.
I've met some wonderful people, and we've all been there for each other at different times.
Can I also say how much I can recommend the new Maggies centre at the City hospital, Notts. A wonderful place, that has just opened. It's aimed at helping Cancer patients, whilst having treatment or their carers who maybe lost for somewhere to go. It has quiet rooms, if you so want some time on your on, or a big hearty kitchen, that has the kettle permanently on!!!
There is always somewhere there to talk to and it can be peaceful or you can have chat with one of the staff.
It looks like a big green apple!!
I found it, whilst having a walk out whilst Mum was on one of her sleeping stints!!! It did me good and it was good to have a non clinical environment, to go and sit in!! It's only open Mon Fri 9-5 but please go and have look, I found Kate, wonderful!!!
Let's hope Mum is out tomorrow.
Thank you for all your help and support, and my love to everyone of you.
Stay strong and positive
Only me xxxxxx
🙂
Hi
I hope your mum is doing well. This site is a godsend.
my husband starts his SCT in the new year (the priming) and then collectin at the end of January and in his hospital for the treatment probably march. I have read so much about it on here and now feel really prepared for it. I know it will be rought for him but hopefully the results will be long lasting. He has just finished his 6th cycle of CDT so is able to enjoy christmas with no chemo!
love
sarah
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