Hi Sarah

My husband went loopy on dex too but he also had sepsis due to the wound in his back after an operation for spinal cord compression. He is now on velcade given once a week and 20.gm of dex for 2 days a week and coping well so far.

Hope this helps.

Maureen

Hi Jean
Hope Michael is continuing to improve and keep fighting for him. Ian was in a wheelchair but is progressing and walking with sticks.

Maureen

Hi Sue
I have just started round 6 sand my opinion has c one down from 13 to 3 – phew! We were getting worried as nothing else seemed to be working for me until pomalidomide was offered.

The side effects are very little now it’s. into my system – in fact, the Dec is far worse!

Hope your ‘pp. comes down SOON

Love Carol xxx x

Sorry Jean it should have been retire . Predictatex bath

Hi Jean

I retired when Ian came out of hospital in October. I was working part time but found the first 2 weeks at home very hard. We weren’t used to being together all day. I now don’t know how I ever fitted work in and we go out most days even if it’s for a coffee.

Regime if you can afford it.

Maureen x

Dick

Sorry to hear your SCT has not been successful YET. There have been a few people on this forum with the same problem only to discover that after a few months they got remission so I hope it will work for you.

Will have to keep an eye on Ian’s hands and feet as he has tingling already.

Eve

I didn’t ever think we would get to this stage a…[Read more]

Hi Everyone.. Wow what a journey!!! I went to see the consultant at the Christie Clinic, by the way he is amazing – Dr Adrian Bloor – he saved my life – Twice! I was admitted on 29th `january as an emergency I had Kidney failure and the Myeloma was so aggressive. The doctor said it was wall to wall inside my body but he didn’t think my body…[Read more]

Jean

What a relief that Michael is on the mend. Infections can be really bad as the immune system is lower with myeloma.

My husband Ian started on velcade today so thermometer will be out every day.

Take care of yourself too.

Love Maureen x

It was good to talk to you and Steph . Ian hasn’t talked much about myeloma and he gained information from you. I on the other hand get lots of information from this site.

Hope you enjoyed your holiday, apart from the weather and had a safe journey home.

Could have been worse, snow forecasted here for tomorrow .

Maureen x

Eve

I use a Samsung tablet which is why my posts are sometimes erratic.

Andy

We are staying at daffodil hotel if you want to meet up for dinner or a drink.

Maureen

We sent the form away just before Christmas and were advised it would take 6 to 8 weeks before Ian would be assessed. Phoned at end of January and were advised that the goal posts have changed and will now be a12 to 16 weeks till assessment. Payment will be backdated but I cannot claim carers allowance until Ian receives PIP ? Form was filled in…[Read more]

Helen

Looked at my post and am mortified. It should have read that Ian is going on Velcade for 6 cycles. Can’t remember what sex is lol.

Maureen x

Hi Andy

Ian going on Velcade and sex on Velcade on Velcade24 March so we are going to the Lake District on 17 March for 2 days.we are staying in Grasmere. Are you near us?

Maureen

Hi Tom

Glad to see you are doing well. Must be awful not able to sleep.

Ian is going for preassesment tomorrow. Consultant wants to start him on velcade on velcade24 March even though his light chains stayed steady. They don’t want to take any chances because of his past record. We have booked a break away at the Lake District for a couple of…[Read more]

Hi Jean

Ian’s FLC are rising and his BMB showed 20% plasma cells so he is going on velcade on 24 March. Consultant said he was borderline and normally they would wait and see as his FLC decreased a little this month but due to his past history they are not taking chances so he will be on velcade for 6 cycles . I hope he doesn’t have too many…[Read more]

Hi Jean

Sorry to hear Frank has shingles and hope he gets relief soon.

As for MRI scan 8 weeks! I would be shouting from the rooftop. Ian had pain in his back and got an MRI scan within 2 weeks. He also had pain i would his hip when we saw consultant on Monday and he got an x ray within 30 mins. Go to your gp and they might be able to help…[Read more]

Eve

Phoned Maggie and she informed me that it is the same MRI scanner but with new software but it is not readily available yet. It still has to be proved. She thought that due to Ian’s 20% plasma cells from BMB that is any he will be starting treatment but he is on the border line.

Our specialised unit for myeloma is in Dundee and she suggested…[Read more]

Hi Dick

We do not have the new MRI scan in Scotland but we do have privateinsurance so it might be worth looking into that.

Hope you are making good progress after your SCT .

Maureen

Hi Eve

Consultant only said Ian would have to1 injection of velcade a week and be monitored every month. Going for pre assessment next Wednesday so I will take my notebook and ask questions.

No trials on this site showing for Scotland.

Hope Slim is responding to treatment .

Maureen x