Hi All, not been on for a while and have only just stumbled on this. Very interesting! I live in Oakham, 9 miles (ish) from Melton Mowbray. We live a 2 minute walk from a plastic engineering factory. Twenty years ago I worked for 5 years (North West of England) for Nuclear Electric, catering for workers, labs etc. So I could take my pick from a…[Read more]

Thanks for all your replies.

We just want to try and see if adding cyclophosphamide will work. Consultant advised that this combination isn’t used at our hospital. Think it is a postcode lottery what treatment you get which really unfair. Ian hadCTD which had to be stopped after 3 and a half cycles to let his bedsore heal. This brought his FLC…[Read more]

Congratulations. Hope you have a long remission

Hi Sarah

Glad to hear M is making progress and DTPACE has worked. Keep me updated on SCT.

Hubby on velcade and meeting with consultant on Monday. Fingers crossed FLC going down.

Just returning from a lovely holiday in Cornwall.

Never give up hope and keep praying.

Maureen x

Vicki

Ian is on his 3rd cycle of velcade and dex. After 1st cycle FLC went from 820 to 545 but rose to 660 after 2nd cycle. Consultant thought it might be a blip but would think about changing treatment if FLC continue to rise. I asked if he would add cyclophosphamide but said no as velcade wouldn’t be working. Not very happy so phoned…[Read more]

Hi Vicki

I hope Colion’s FLC go down next meeting with consultant, it may be because of infection. We are waiting to see if Ian’s will still be rising when we meet the consultant in 2 weeks time. Hopefully it was a blip in both cases.

Off to Cornwall next week Saturday for a week, can’t holiday abroad yet.

Thinking of you both.

Maureen

Hope all goes well with the SCT?

We attended an information day in Glasgow and would recommend it.

Good luck

Maureen

Hi David, Megan and Eve

Thanks for your replies. I spoke to Maggie and she informed me that as Ian had an infection it is possible that is why the FLC could have risen. I also asked the consultant if he would give Ian cyclophosphamide he said no as if his FLC rise again he will change to revlimid. Maggie advised me to go for a second opinion if…[Read more]

Hi Jean

Good to hear Mike is getting stronger. Enjoy your holiday.

We are hoping to get away for a week at the end of June but haven’t decided where.

Maureen x

Hi Helen

Nice to hear you had a lovely 60th birthday and all the family were good to you. I had mine last year when Ian was in hospital. My daughter treated me to 3 days in Nice and my son gave us vouchers to use at Gleneagles. It was a real treat.

Hope you are doing well.

Maureen x

Hi Sarah

It must feel like M is going through a really rough time, but there is light at the end of the tunnel. My hubby Ian had sepsis, c diff and mrsa when he was in hospital and in isolation. We both were scared and anxious most of the time, as he also couldn’t walk. Roll on one year and 4 months, he is walking and we have had short breaks…[Read more]

You must be pleased with results. Good luck with SCT. Hope it gives you a long remission .

Maureen x

Hi Sarah

My husband had back pain which was mild initially, went to gp sent away with pain killers. Took 7 months to be diagnosed, by which time he was in considerable pain. We went privately for an MRI scan and they found a huge mass on his spine. He did have bloods taken but they didn’t show anything sinister as he has light chain myeloma and…[Read more]

Sarah

Enjoy the bank holiday and have a nice bottle of red.

Maureen x

Sarah

I take one day at a time and try not to look to far ahead. Ian is walking much better and now walks a little without sticks so do not give up hope that M will progress. Hope the treatment is not too harsh on him.

Thinking of you both

Maureen x

Sorry to hear that younhave relapsed. Hopefully you will get treatment which doesn’t have too many side effects and will give you a long remission.

Would you go for another SCT?

Maureen