Tagged: pherheral neuropathy, Zometa
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So after 5 cycles of chemo and steriods, my sister has now recently had her stem cell transplant about 10days ago. She’s now gone really ill…is this normal? She’s still in hospital will be 2 weeks Monday. She was ok after the transplant to begin with, then recently she has
Very weak, sick, diarrhea, had a chest infection, on antibiotic drips 48 hours, plus now potassium drips.
She isnt eating much now just cornflakes. She had to have some blood transfused into her yesterday. Her bloods are showing no nutrofills??? No immune system cells I think they said.
So her 3rd week in hosp next week, any idea when this will all change
Hello,
Based on my experience this is very similar to my own transplant. During the early part I was ill but manageable, but then I hit the bottom about 11days. This is when your immune system hits the bottom and the your body then starts to recover.
I got sepsis, chest infection and all what your sister has. They put me on antibiotics for seven days.
Eating was bad also, I used protein drinks the hospital gave me, I avoid the tube in the nose and pushed myself. I found cereals ok, very small amounts but with sugar.
I was in isolation for 20days, some people actually go longer so we were pleased to get home.
I’m four months post stem cell transplant and in recovery now.
It will get better, it’s hard for the family , my wife and children had to watch the bad days. But please be assured she is in the best place, I found Liverpool Claterbridge Hospital fantastic and they helped me through the whole period. We can’t thank them enough.
Best wishes.
Thank you for your reply. Yes she has gone right downhill they called it her ‘spike’, and tonight theyve given her some complan to try to boost her as she just cant manage much food.
Can I ask, when she goes home how much care will she need? I assume she wont be able to do much, or be out of bed for a whike. Her husband will be there but I think I should go and help look after her
Agree with everything posted by Mash. My wife had a STC and around day 11 it was really hard to see her curled up in bed and not eating. But the doctors and nurses kept reassuring us and she soon bounced back as they said she would. Two years later she hasn’t looked back.
It will depend on age and general fitness. For me towards the end of the stay they let me out in wheel chair to visit the cafe. I had to wear a mask but it started me feeling much better and normal.
I walked out of the hospital, I wanted to do this to prove that this is the beginnng of a new chapter.
I needed rest and when tied I went to bed and slept as needed. Each day I grow stronger, I had visit hospital every week for test, until three months post stem cell transplant. In the weeks after my release 😃 I started to walk a little more each day.
My wife looked after me and ensured everywhere was clean as we wanted to avoid infections. No visitors with infections. Taking temperature every day is a must. Buy one of the electronic ones, they are great.
I had a few scares, a visit to A&E, you may get blimps but don’t worry just be there for her when she needs you.
Everyone will be different but I’m sure she be back on her feet and in remission very soon.
Thank you again for your replies and advice. She is 59 and has always been fit and well she has always been very positive about not letting this get her dow n albeit it several bouts of crying but always picked herself back up.
I think I will go and stay for a few days each week when she’s home
Went to see my sister today she did look very weak and thin, Ive not seen her for a week as was away. She said she felt better than last week. She did eat abit of lunch and 2 bits of banana. When I left the Dr came round and said they were pleased with her progress and pleased with no more infections, bizarrley Dr said her bloods think she said nutrofills were showing 0.3 and they need them at 0.5 and if all goes well she could go home Tues or Wedn. My concern is she looks so weak and tired Im shocked they are thinking of sending her home!
It is a good sign that her stats are going up. You should she a real imporovement each day going forward. It might appear slow but it is a significant operation that has occurred but hopefully in the coming days she’ll start to eat a little more and become physically capable.
They will not release her till they are sure. Do note that this is not the end she’ll be monitored each week, and she must monitor herself checking temperature often.
You’ll see an improvement each day, not seeing her for a week I expect was a shock but things will I’m sure change in the coming days and you’ll see the results coming to fruition.
Stay positive.
Hi ,I’ve never posted before so hopefully this will be read by mash.could I ask you how you found things when you were discharged .my husband is day 7 post sct.we usually have our 2 year old granddaughter during school term time and we are wondering how we will cope.hope you are feeling well.regards
Hello “ebbw”,
May I wish you great strength in the coming days, stay positive.
I never posted either until this week as I was going through my own challenges, but when I saw the post I thought I’d reply as I wanted to help others.
It’s an interesting question about minding a grand child and I don’t have experience so I will can provide you with what worked for us.
For the 90 days post STC we avoided crowds, yes we went to cafes but always tried to go to smaller ones with lots of space. My wife used detol a lot, cleaning door handles each day. Some might say it was a little OCD but I never got any infections so it worked for us. When I visited hospital for the first six weeks I used a mask also.
I had my own towels in bathrooms, washed hands often, clean clothes everyday, two showers a day. We have a dog but I avoid contact for a few months after the STC.
For you the difficulty I would be worried about is children can pick up lots of things especially from a nursery, or when they go back to school first fews weeks of term time September.
I’m still waiting for my childhood inoculations which is Sept as you know all these go with the transplant. My biggest issue is pherheral neuropathy it started 4 months into VTD and today it’s better that then but that’s a story for another time. Oh the pain…
I’m started on zometa every month for two years but it don’t like me 🙁
I went back to work after ten weeks post STC fortunately I’m home based and although my job involves flying my company has allowed me to avoid this, hopefully until Oct.
I harvested my own cells which also helps.
I think you need to discuss with the Dr under his care, I’m not medical. Take advice call MM help line (we used it, great service). Talk to the expects as I’m sure many younger people with children have gone through the same worries and concerns you have.
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So my history
Diagnosed at 50 with unrelated condition with paraprotein levels.
Watch and waited till 55, tested every three months. The bigger dipper we called it, stress up/down, up/down….
28th August started VTD, had STC 28th March 2018.
Bone biopsy and bloods came back good and now in remission August.
See consultant in Sept for the next checkup.
Just need my feet fixing….. 🙂
Thank you for your reply.I did post yesterday but sent it to the web team! I did say I was new to this.I found your advice very helpful.My husband also has neuropathy from velcade and finds that more difficult to cope with than the MM at times.He finds gentle massage helps a bit.The zometa also made his calcium levels plummet so low he couldn’t walk but that was soon fixed and now he has a half dose of that and half steroids if he needs them .We will be very OCD about cleanliness.Saw him yesterday and he’s doing quite well considering.We are going to see how it goes looking after our grandaughter.If we can continue i think it will be a good distraction for him.She is so funny and fills our lives with such joy.All the best for a long and happy MM free time.
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