[vincyParticipant]

Same for me regards the appetite when I went in for my transplant and for a couple months after, though I did have a bout of muscositis, which is an infection of the mouth which didn’t help.

I was on the fortisip drinks for a while. I lost 3 stone in 3 weeks when I had my transplant. I’d been trying to lose weight for years without success, so I’ve taken this as a positive (not
Trying to make light of your situation)

I’ve put a bit of weight back on, but nowhere near what I have been carrying since I was a teenager.

The best advice I can give is to trust in your consultants and take their advice. Doesn’t mean you can’t question anything, in fact that is what they are there for. If anything is worrying you, get advice and keep asking if you don’t understand straight away. I was at a stage 6 months ago where i was really down and I didn’t think I’d ever improve pain wise, but that seems like years ago the way I feel now.

[vincyParticipant]

Hello Carole

I suffered with bad leg pain following 4 courses of Velcade treatment. Ended up having to take oramorph which didn’t really work for me. I was then subscribed the slow release morphine tablets which helped a lot, also with the backup of oramorph should the pain get severe. This was diagnosed as neuropathy the same as Robert wrote, but mine was pain, not numbness.

The pain had almost subsided when I went in for my stem cell transplant, with me getting down to 20mg per day of the slow release morphine from a high of 40mg per day.

After the heavy dose of chemo for the stem cell transplant, I went from 20mg per day, to 80mg per day in the space of two weeks. 🙁

That was in August. Today, I am taking 20mg per day and ready to drop to 10mg.

My advice speak with your consultant and get them to help in managing the pain. I was bed ridden for weeks because of the pain, but it definitely improved over time. Might take months, or may never get back to normal, but hopefully this will get better over time.

Tony

[vincyParticipant]

Hello Jen

You may have seen another post in the newcomers section which I replied to regarding leg pain, so may want to take a look at that. https://forum.myeloma.org.uk/forums/topic/loss-of-apetite-and-severe-leg-pain-during-the-night/

Becoming worse for me, so very interested to hear of anything which brings relief to you.

Regards

Tony

[vincyParticipant]

Hello All

Tony here 48 years old from Coventry in the UK, diagnosed last November, started treatment February, in remission after 4 cycles, waiting on Stem Cell Treatment.

Not sure why I’ve received an email alert for the original post, but it’s prompted me to make my first post here:-)

You should certainly speak with the consultant looking after you to explain your concerns. It’s not clear what stage of treatment your Mum is in, but my appetite increased dramatically when on steroids, but after stopping using steroids, my appetite has reduced to below levels. I was just having this conversation with my concultant today 🙂

I am also suffering with leg pain (Both legs). Mine started during Chemo Treatment when my legs got really bloated. Because my Chemo treatment was going so well, they took me off Thalidomide which got rid of the leg bloatedness very quickly, and also the pain.

I had some more leg pain after the leg bloatedness had been cured, and this was fixed again by taking me off the water tablets I had been taking to help with removing any excess fluid during the leg bloatedness issue. This again cured the pain issue.

I finished my treatment after 4 cycles and I am now in remission, looking forward to my Stem Cell Replacmentscheduled for the next month or so, but the leg pain returned about 3 weeks ago after finishing treatment. Very painful as you say, and I have been prescribed some medication from my consultant, so please speak with them about this problem.

In my case, they think me stopping taking the steroids quickly after using them regularly, may have had an effect on my muscles which is causing the pain. Mine lasts most of the day. The good news is that I can feel this getting better over the recent days. I hope you can find a solution to your problem after speaking with your consultant. Let us know how you are getting on.

Regards

Tony

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