Hi everyone, hope you are all feeling ok at the moment. Well I had my operation last week and I must say it was a great success, I have no pain from the fractured vertebras at all.
But, would you believe I now have pain from muscle spasms, the hospital have given me some diazepam to help relax my muscles, they also increased my oxycodone to 110…[Read more]

Peter

My email address is maureen_cerdan@yahoo.co.uk.

Going to ask consultant why Ian will get no maintenance so I would appreciate if you could email me the article.

Hope you are still keeping well.

Thanks

Maureen

Peter

Can you email me the report on maintenance?

Maureen

Hi Eve

Might take a leaf out of your book as am running around trying to fit everything in. Every time I feel like baking or not using the dishwasher, I can hear you say make it easy on yourself. Still working 2 half days and one full day, running to the hospital and taking in meals for Ian. His bed sore is healing and he is now allowed up…[Read more]

Hi David

Hope you are feeling better and the pain has subsided. Enjpy your trip to London.

Consultant advised that Ian wouldn't be going to my daughter's wedding in London on 6 July. I haven't told him yet as I am still hopefull. He is still stuck in bed with this bed sore.

Maureen

Hi Helen

Sorry you have had a relapse but try to stay positive. I will put up a prayer for you.

Love Maureen x

Thanks so much everyone for the understanding and encouragement Not had a very good week with sickness and anxiety but maybe it's because I go for my operation on Monday to repair my Vertibraes at least once that is done the pain will hopefully subside leaving me stronger for the SCT. Thanks again, it's amazing to know other people care and it…[Read more]

Hi Dai

Ian's treatment stopped to allow his bed sore to heal as it is quite deep and could have gone into his bones. It is looking a bit better but still have a few weeks before it has healed. He is not allowed out of bed and is on a 30% tilt to take the pressure of the wound, so we cannot go forward until the bed sore is healed.

No SCT at…[Read more]

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…[Read more]

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

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

Hi Helen

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

Maureen

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…[Read more]

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

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…[Read more]

Hi Tom

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

Maureen

Hi Terry
I have only just seen your post because I have been "out of things" for a while – chemo etc. getting ready for the second transplant having had the same rotten news as yourself. I don't blame you for being bitter but at least they found it early – mine seems to have becomr non secreter (not sure if that's exactly right)so the urine…[Read more]

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.…[Read more]

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