[bandityogaParticipant]

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 by social worker.

Thinking of contacting our local .mp to complain.

Good luck

Maureen

[bandityogaParticipant]

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

[bandityogaParticipant]

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

[bandityogaParticipant]

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 days before he starts treatment.

Onwards and upwards

Maureen x

[bandityogaParticipant]

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 side effects as he is getting stronger and can now walk with 1 stick and sit in a normal chair.

Hope you get some answers.

Maureen x

[bandityogaParticipant]

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 you.

Maureen x

[bandityogaParticipant]

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 that we contact them if we need a second opinion but it is over an hour travelling each way. If we are not happy with treatment we will travel.

Looking to go away for a few days to a nice hotel in Scotland. Ian doesn’t want to go abroad yet.

Hope all goes well.

Maureen

[bandityogaParticipant]

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

[bandityogaParticipant]

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

[bandityogaParticipant]

Hi all

Thanks for your good wishes.

Eva nice to know you are responding treatment, we must meet in Edinburgh when you are better.

Saw consultant today and even though Ian’s FLC went down a little he will start Velcade on24 March. We must get away for a few days before.
Eve
I ask consultant about new MRI scan and he didn’t know about it. Also said it would not be available on nos! I also askedabout a pet scan and he said it was irrelevant . Also wanted to know how much bone damage Ian had but would have to look back too many notes. I’m not too happy with that.

Love Maureen x

[bandityogaParticipant]

Hi Angela

My husband Ian was diagnosed in October 2012 and chose the nhs as consultant advised that he would se the same doctors. He has had really good treatment and advice from all staff.

Wishing you well.

Maureen x

[bandityogaParticipant]

Hi Andy

Good news. Enjoy your beer.

Maureen

[bandityogaParticipant]

Good news David hope you get a long remission and enjoy your holiday.

Maureen x

[bandityogaParticipant]

Hi Tom

It was a good bottle of red.

Hope you aren’t having too many side effects from the drugs.

Maureen x

[bandityogaParticipant]

Hi Tom

Ian’s BMB showed 20% plasma cells but all bloods and kidney function normal. Got at least 1 months reprieve before he starts treatment again.

Start counting sheep when you’re drinking the vodka. lol

Wine for us tonight.

Onwards and upwards.

Maureen

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