[caz75Participant]

Hi

My husband has just had fourcycles of treatment for Myeloma and the Velcade has left him with painful legs and feet, does it ever improve? someone has suggested CBD Oil can anyone give me any info.
Thanks

[robert0439Participant]

Hello Carole,
I had several infusions of VTD as a prerequisite to my stem cell transplant just over 12 months ago. A known direct side affect from the Velcsde is peripheral neuropathy which I experienced in both my lower arms and lower legs. The pain and numb feeling in my arms/hands has fortunately gone however, I am still really struggling with my feet. It’s an odd feeling – or lack of feeling as in my case, which is very difficult to describe.

I have tried several things in order to try and improve the issue that I have but nothing seems to work however, I do take Doloxetine which helps with the pain but not the jelly like feeling so am always looking for something better.

I have read quite a bit about CBD oil but there are so many variants of this I would not know what to take. I am seeing my consultant soon so will raise this as a discussion item.

Kind regards,
Robert

[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

[caz75Participant]

Thanks for the info much appreciated

[caz75Participant]

Thanks for the info much appreciated not quite used to these sites, so many questions with Myeloma, David has lost his appetite but the Consultant says his blood is ok after 4 cycles, thought he would improve, but no appetite and aches and neuropothy says damage to nerves, so back to GP and painkillers that make him sleep, so he has lost a lot of weight, am totally confused.

[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.

[tmcintyreParticipant]

Hi,

When my husbands neuropathy started to trouble him the dosage of Velcade was reduced and he was prescribed Amitriptyline. These eased the symptoms a fair bit. Always tell the consultant how the treatment is affecting your husband as they can adjust it,

best wishes
Teresa

[Author]

Posts