[RabTenParticipant]

First time on here – registered and first post.

Thanks to everyone's contributions I learned a great deal by visiting.

I have had CTD for four cycles last year and have had SCT from late January this year.

I had a letter copied in to myself which has been sent to my GP and has just arrived.

I did not understand the jargon on the letter and felt a need – for the first time – to understand a bit more about what I can expect. So I found my way to this site!

The letter states that I have complete biochemical remission and I am on a maintenance treatment of Zometa every six weeks with no other medication. I am to be monitored on the same frequency at the Northern Centre in Newcastle.

I have cervical spondylosis as a result of the myeloma and have had a fractured ulna last year. I have IgA myeloma. The letter also states that I now have normal light chain levels.

My wife and I are looking forward to wild camping (motorhome) in Skye this summer – she is the DD – fingers crossed for this!

[tomParticipant]

Hi Rob
And a warm Welcome to you and well done to you.

After my SCT in 2009 (Dec) I went onto Zometa for 2 years am now in remission and drug free 😀
The Zometa might give you symptoms of Flu but that will soon wear off.

Good Luck and well done so far 😀

Tom Onwards and upwards

[andygParticipant]

Hi Rab
Welcome to the site. Sorry you have to be here but I guess we are all sorry to be here. It's a warm and friendly place to be.

The good news is as the letter states your in complete remission so well done.

Zometa is a bone strengthening drug that also has shown to work against myeloma. I'm sure you'll of been prescribed it to prevent further bone damage. As Tom says usual side effects of zometa are flu like symptoms such as aches etc. these tend to get less as you become accustomed to it. It's given as an infusion usually taking 15-20 mins. I've been on zometa since Oct 2011 and still get some side effects but compared to some other chemo side effects they are quite mild.

I hope you have a long and healthy remission and have a great trip to Skye.

Everyday is a gift
Andy

[VickiParticipant]

Hi there,

Welcome to the site, not a place of choice, but a comfort none the less. Congratulations on your complete remission, take each day as it comes. As Andy says they are all a blessing. Take it easy and build yourself up gradually

Vicki and Colin c

[RabTenParticipant]

Thanks all,

It is good to be in remission.

It is still painful – since SCT – to get up from prostrate or to sit too long or to stand too long. During CTD this was controlled by the steroids etc. I don't like taking pain killers and avoided using the MST etc during the last year. Can I expect any reduction in spinal and lower rib pain over time? I don't exercise but I do mild stretch and bend of torso as maintenance.

I have a desk with computer job which is fairly low stress and am well supported by my colleagues and bosses.

I am coming to the end of the sick note I took for the SCT treatment – my transplant doctor indicated at least two months minimum for recovery of my immune system etc but my family are urging me to take more time off. I worked during most of the treatment to date and while I am aware I cannot lose my job; I know I will not be able to get another! I may still need to have my neck stabilised and the bones repaired so will continue to wear a collar until July, at least, and may need further time off work for that. However, during the nine months treatment so far, the scans of my neck have shown poor condition in the cervical bones with no improvement.

Obviously, I am bored at home and want to make the most of my present situation.

Thanks for any related experience that you can offer.

[tomParticipant]

Hi Rob

Yes sometimes when i am sat down for anylenth of time i find myself "Stiff" and difficult to get of the chair some days, but hey that could just be my old age hitting me sooner than most Ha ha.

I still work (light duties) company gave me a portakabin with everything in it and stuck it near the gate and said just book lorrie's in and go steady, had those light dutie's since May 2010 when i went back to work after a year off.

Keep going Rob

Tom Onwards and upwards

[Author]

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