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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Side effects of VCD / CyBorD?

by Florence on Sat Jan 11, 2014 12:18 pm

Hi.

New to the forum.

Can anyone tell me if they have had side effects of numbing lips, tongue and cheek area from VCD (CyBorD) [Velcade-cyclophosphamide (Cytoxan)-dexamethasone] therapy?

Florence

Re: Side effects of VCD / CyBorD?

by kjpoppit on Sun Jan 12, 2014 12:42 am

I am undergoing CyBorD treatment and I have not experienced that. Treatment has been pretty easy on me. Be sure to run this by your oncologist. Good luck.

kjpoppit
Name: Kim Nelson
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept. 19th, 2013
Age at diagnosis: 47

Re: Side effects of VCD / CyBorD?

by StandingTall on Sun Jan 12, 2014 2:53 am

Florence, are you getting Zometa (zolendonic acid) treatments for bones as well? I am getting CyBorD, and haven't had those symptoms, but have been asked to look out for any numbing on the lips or pain/numbing along the jaw as a side effect of Zometa.

StandingTall
Who do you know with myeloma?: Me! yay!!
When were you/they diagnosed?: Sept. 2013
Age at diagnosis: 39

Re: Side effects of VCD / CyBorD?

by Florence on Sun Jan 12, 2014 11:12 am

I have been on VCD for almost a year. The symptoms are relatively new and occur about 3 days after therapy. I have had a Zometa infusion but it was about 4 months ago.

Florence

Re: Side effects of VCD / CyBorD?

by blayz on Thu Jan 16, 2014 3:21 am

Hi Florence.

I am including the link of a reply I posted earlier that is more detailed but the short story on my side effects from my VCD experience is:

Some foods do not taste as good but the metal taste is not consistent with everything I eat - just certain things I taste. When I do notice that the metal taste/numbness it is when I am not eating but I dont recall how long it lasts. No real appetite loss but the lack of energy makes catching that food prep window hard, if I miss it I will pass on food altogether. Dry mouth is on and off but does not come on strong until around Thursday. Fatigue for me is constant along with the difficulty focusing. Back pain is consistent and painful with the wrong movements.

Mild headache starts within 2 hours of finishing treatment, nothing debilitating just a 'hum' of pain in my head that lasts for most of the week. My treatment starts on Monday and the side effects usually become less intense around the weekend and allow me to have a normal Saturday- Sunday w 'minimal' (more manageable) symptoms.

http://www.myelomabeacon.com/forum/new-velcade-treatment-t2729.html#p14846

blayz
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 2013
Age at diagnosis: 45


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