[mashParticipant]

Hello Deb,
I have experience on similar when my dentist decided to remove a tooth while on Zometa.

I will not go into side affects but it was unpleasant due to fact that the dentist knowing I was on Zometa should not have undertaken the procedure he also saw the side affects thereafter , probably I’d say he will not do it again.

Eventually I was referred to oral surgeon in the hospital, immediately I stopped zometa and had jaw X-rays and they found that I had Osteonecrosis of the jaw.

I’ve been under the surgeon in hospital for about two years, monitoring essentially. The good news is that my jaw appears to have recovered and it looks like I’ll be discharged early next year.

I never went back on Zometa which was a shame, but my Consultant said he was not too concerned.

I’d go to A and E as they will and should X-ray the jaw. He needs a special head scan of the complete jaw, dentist don’t have the correct machines to do a full head scan.

They will immediately see if there is damage, and very likely refer you to Oral Surgeon in the hospital if needed.

What I would recommend is don’t have more Zometa , unless you are cleared by Oral specialist and Haematology Consultant.

Stay strong, it’s hard but there is hope.

I’m due for my quarterly review first week in Jan, it will be four years in March since my transplant and still in remission.

Mike

[mashParticipant]

Hello,
I’ve received a letter and text from the government to shield and I’m not on treatment.

I had my stem cell transplant two years ago, in remission (watch and wait) and due to see my consultant in May but don’t know what will happen now.

Hope this helps

Stay safe.

[mashParticipant]

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.

————————————————

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….. 🙂

[mashParticipant]

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.

[mashParticipant]

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.

[mashParticipant]

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.

[Author]

Posts