[bandityogaParticipant]

Hi Jan

Ian's light chains were initially 4000 and now 52 after 3.50 cycles od CDT so he has had a superb response. No SCT at present as he is still bedridden but who knows whaT will happen in the future. One day at a time.

Only hope this bed sore will heal soon and he will get more intensive physio so we can see how mobile he can be.

Thinking positive and praying.

Hope you have a long remission.

Love Maureen

[bandityogaParticipant]

Hi Helen

Are you sure you're not a mathemetician? I will ask the consultant what Ian's light chains are on both kappa and lambda. Thanks for the information.

Ian's were initially 4000 and now down to 52 after 3.50 cycles so he has had a superb response. Hope he is in remission a long time.

Love Maureen

[bandityogaParticipant]

Hi Jan

Thanks for the information. Ian's light chains are 52 and the treatment has stopped. He is receiving zometa every 3 weeks at the moment and being monitored by the NHS. Consultant said 52 was near normal bloods. What is normal? SCT is ruled out at the moment until we see how much mobility Ian has.

Mauren

[bandityogaParticipant]

Hi Helen

Glad that you haven't got blood clots youn will be so releived.

Maureen

[bandityogaParticipant]

Hi Eva

At last things are getting better. The shingles have now gone and I have had some respite this week as I have only gone in once a day as Ian has had other visitors. The consultant said Ian had an excellent response to treatment so I hope he has a long remmission.

Did you get any maintenance treatment after CDT? Should we ask for dexa scans as we still have private health insurance.

How are you on velcade. I am off work niext week so I will phone you one night.

Maureen x

[bandityogaParticipant]

Hi Scott

Thanks for your advice. Should we ask for maintenance treatment as we have private insurance.

Let me know how you get on on Monday.

Maureen

[bandityogaParticipant]

Hi Scott

Thanks for your reply. I asked the consultant if Ian would get a maintenance drug and he said no but Ian received zometa iv yesterday and he will get it again on his next visit in May. Is this not a maintenance drug>

Hope you can decide soon whether to go for an SCT but it is a big decision and some people get years of remission and others months. Wish they could find a cure.

Take care

Maureen

[bandityogaParticipant]

Hi Tom

Hope all goes well with the SCT and you get a long remission.

Maureen

[bandityogaParticipant]

Hi Scott

Ian has had treatment stopped to let the bed sore heal but consultant thinks that 54 is near normal and doesn't think he will get more treatment. A SCT is not on the cards at the moment until we see how mobile Ian can get. Did you get maintenance treatment when you stopped treatment?

Hope your light chains come down some more.

Maureen

[bandityogaParticipant]

Hi Tom

Sorry you have been poorly. Hope you are wrapped up in your onsie with a G & T.

Take care of yourself.

Maureen & Ian

[bandityogaParticipant]

Hi

My husband started on CDT but had to stop to let a back wound heal. He wasn't tolerant of it first time but when they restarted after 6 weeks he was fine. His light chains are now 54 and he has had an excellent response. Give it another try as it really works.

Maureen

[bandityogaParticipant]

Dai

Hope you get this sorted out soon. Get an opinion from another consultant. You are quire entitled to do this.

NHS bah

Maureen

[bandityogaParticipant]

Hi Jo

Sorry to hear you have been unwell in hospital. Hope you are feeling better.

Maureen x

[bandityogaParticipant]

Gill

What a lovely photograph and Stephen looks so well. Look back on the happy times. Stephen would want you to enjoy life.

Sending love

Maureen x

[bandityogaParticipant]

Hi Andy

Great news. have a few drinks.

Maureen & Ian

[Author]

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