[claicarterParticipant]

Dear SABS / Katy,

I can’t believe I’ve not posted for almost a year now it either what a year it has been! Anthony is now in partial-remission, we are now playing the waiting game. He has only just been cleared to go on holiday so we are off to Dubai in just over a week. We used to ski once a year but that is now impossible due to his fused spine. We are hoping we will take to hotter climates and begin a new regime of holidays. We take each day as it comes and live for the moment, we are both happy and healthy, may long it last. Good luck to all those still in the thick of it, our thoughts are with you always. KR, Claire x

[claicarterParticipant]

Sorry for the long gap between updates but its been a busy few months.  Anthony had his SCT 6 weeks ago tomorrow.  It was incredibly hard going for about 2 weeks, Ant was very poorly from the day after the high dose chemo. He slept constantly for the first week, then the S&D kicked in!  He lost a stone in weight in 3 weeks. He was discharged on day 14 which in my opinion was a week too soon as he was very sick the first week home.  He went back to work on our family dairy farm in week 4 (mornings only for the first week. It’s now week 6 and he’s back at work full time 7am to 7pm – although he’s tired in the evenings.  He’s still losing his hair by the day.  We are planning a holiday and looking forward to a cancer free year.  Good luck to all those who have yet to have their SCT – please remember when you’re in the thick of it…… it will all be worth it! X

[claicarterParticipant]

Wow 6 million is amazing!  Does he have a date yet for his high dose chemo? Just wondering how soon after the harvesting out is done.  Wishing you both all the best for the next bit. Claire x

[claicarterParticipant]

Thought I’d share some good news – hubby’s PP is now down to 2 after 3 rounds of VDT and he’s been cleared for his SCT after round 4,  which he started yesterday.  We’ve had the SCT process thoroughly explained and whilst some of it does sound daunting we are more determined than ever to get through this and out the other side. We are aiming to get him back to full strength for our son’s wedding next June.  He’s a very determined man (having worked full time all through VDT) so we are staying positive but realistic.  Sabs – I hope the SCT harvest went well. Claire x

[claicarterParticipant]

Also how bad is the chemo they give you after the harvest during the SCT process.   Our consultant has described it as “being on a thimble full of chemo now and going into a bucket load during SCT”. How did people come with this?  Thanks

[claicarterParticipant]

My hubby has just finished round 3 of VDT.  His FLC were down to 6 after round 2. Our local hospital has a backlog for the PP level results but the consultant is confident that with the FLC coming down so much the PP level should be somewhere near.   I know the reduction can slow down with each round.   Can anyone tell me what there round 3 and 4 reductions were like.   We are aiming for SCT this side of Christmas.

[claicarterParticipant]

Wow, 38 to 10 is excellent after just one round.  Were you at all disapointed that it then only dropped by 4 after round 2, although still a great result? It would be great to hear his round 3 results when you get them as your hubby sounds just ahead of mine in terms of treatment. Are they planning  SCT too?  C

[claicarterParticipant]

I put my hubby on Curcumin capsules (with an extra ingredient built in to aid absortion) the minute he was diagnosed with Myeloma before the doctors got him on anything else. His para protein levels have been coming down ever since. However, he’s also had radiotherapy  (only reduced PP level from 31 to 29.7) and today we got some great news that after just one round of VDT his PP level is now down to 11!  I’m sure it’s the velcade, dex and thalidomide doing most the work but a part of me believes that the curcumin is also playing a part.  Every little helps!  C

[claicarterParticipant]

Hi Helen, my husband (47) was diagnosed in May and at first we did seem to be waiting around a lot for results once you get a full diagnosis though it usually speeds up dramatically.  3 months in and he’s been operated on, started and finished radiation therapy and has just completed round 1 of chemo with some excellent results!  What stage of diagnosis are you at? C

[claicarterParticipant]

There was also a lady on Radio 4’s food programme who sounds like the same one. You can download the pod cast from BBC online. I’ve put my hubby on  Curcumin capsules with an added ingredient to aid absorption. Every little helps!

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