[louishenryParticipant]

My experience was similar to Rebecca’s. First week twiddling my thumbs wondering what all the fuss was about, second week horribly horrible, third week recovering. I was in an individual room throughout in Southampton.

[louishenryParticipant]

Fitness is more important than age, if the doctors are offering SCT your mum is obviously fit enough to cope. I am in my mid sixties and had a sct 9 months ago and was up and about after a few weeks, more or less back to full fitness after a couple of months. Myeloma is so variable you can never be sure how effective treatment will be, but I’ve been lucky so far.

[louishenryParticipant]

It means don’t panic, the doctors will find a new combination of drugs to get them down again. This happened to me. It means a longer period on chemo but I’m sure she will get to remission.

[louishenryParticipant]

I had a bit of exposed bone in my mouth. The maxillofacial doctor sorted it out by scraping back a bit of bone, then mouthwashes. It healed in time for my SCT last November, no problems since then. She said if the Zometa helps the myeloma keep having it and I’ll sort out any problems that arise. So I’m still having it every four weeks

[louishenryParticipant]

I was diagnosed 18 months ago, went on the Myeloma XI trial. 4 cycles of CTD worked well but on the 5th cycle paraproteins went up a bit and on the 6th cycle went up a lot, so after a few weeks off treatment I went on to Velcade (VCD) which worked much better. 6 months ago I had an auto SCT and am now in remission and virtually back to normal though I am on Revlimid maintenance which will hopefully extend the remission. So keep taking the pills and injections, trust the doctors, and hope for the best. Be patient, I got there in the end and I’m sure you will too.

[louishenryParticipant]

Having myeloma is horrible so feeling sad scared and anxious is very understandable. Being a fairly uncommon cancer you will probably only meet other people with the disease at the hospital. If you do Facebook there is a UK Myeloma Support Group you could join. This site is clear and informative but Facebook is good for chat and mutual support. It does make you feel part of a community which will help if you live by yourself.

[louishenryParticipant]

I well remember the feeling of panic and trauma in the first few weeks after diagnosis but it’s amazing how soon we get used to it. There’s no cure but the treatment is effective and as it begins to work you will feel a bit calmer and more positive. This site is brilliant for reliable information. I was diagnosed 18 months ago but after 12 months of chemotherapy and a stem cell transplant I’m almost back to full fitness, so be patient and do everything the hospital advises.

[louishenryParticipant]

Hi Geoff, I will certainly agree that Southampton are tops. I was diagnosed December 2014. More than 12 months of chemo and a stem cell transplant later I’m pretty well fit again so keep popping the pills, you’ll get to remission eventually, fingers crossed!

[louishenryParticipant]

<p style=”text-align: left;”>Hi Sonia, I had my stem cell harvest and transplant at Southampton a few months ago and have got nothing but praise and thanks for all the staff there. Harvest was tedious but not painful at all. The sickness and diarrhoea and sore mouth are no fun when you have the transplant but in my case only lasted a little over a week. I was out in under three weeks and now two months later am almost back to normal. So far so good, I will know next month after the bone marrow biopsy how successful it has all been but I  am hoping for a good long remission. Good luck to your husband, he’s in good hands</p>
<p style=”text-align: left;”>Louis</p>

[louishenryParticipant]

Thanks for that Rebecca. I’m already more active than I expected, walking and cycling, but still feeling a bit queasy. Food tastes OK but drinks are most peculiar tasting. The only drinks that taste anything like normal are Coke, well cheap supermarket cola, and white wine! I’m all in favour of treats and indulgences. There’s a very nice little bakery opposite the ferry terminal in Cowes but I might have to be careful with takeaway foods for a bit.

[louishenryParticipant]

OK Graeme, you win the race. I’ll be home tomorrow, greatly looking forward to it. Under 3 weeks so I can’t complain.

[louishenryParticipant]

Well done Graeme and hear hear on the thanks.

[louishenryParticipant]

Thanks for that Mike, I’m now SCT+12 and they are considering throwing me out on Friday, SCT+16, infections permitting. I’ve always been skinny, about 65 kg. I went down to 59.8, now back up to 63. Not so boring now I’m allowed out on the ward as long as I wear a mask. Graeme, I hope you’re also now on the way up

Louis

[louishenryParticipant]

Yay! Neutrophils up, throat not so sore, still on drip hydration and antibiotics but I think I’m winning at last.

[louishenryParticipant]

Andrew – that’s very encouraging, here’s hoping!

[Author]

Posts