[christaylorParticipant]

Dear all, having been in remission for the last 18 months following a SCT my blood test results show a marked rise in my light chains. Therefore my Consultant has sent me for a Pet scan, MRI scan and a BMB. If these tests conclude that the MM is coming he told me I will be going onto Velcade for my treatment, even without the test result I think it is back because my bone pain has increased dramatically . If anyone could give me any advice on side effects when taking Velcade and how best to cope I would much appreciate any information. Many Thanks.

also I would like to wish Merry Christmas to everyone who reads this post and pray that 2017 brings us new hope in the fight against MM. CT.

[davidainsdaleParticipant]

Hi Chris, sorry to hear that you might be back on treatment.

There seems to be plenty of positive news coming out on the drugs front which gives hope for the future.

There is a MUK Infoguide series on Velcade and myeloma – this might be a good starting point for you and probably answers some of the questions in your post.
Seasons Greetings and hope this helps.
David

[christaylorParticipant]

Hi David, thank you for the quick reply and info, I will certainly check it out. All the very best. CT.

[janwParticipant]

Hi Chris, I’ve recently completed the max 8 cycles of VCD followed by my second sct in September 2016. I tolerated the Velcade well. My nausea seems linked to cyclophosphamide rather than velcade. However I did suffer peripheral neuropathy in both of my feet and legs after cycle one, therefore the doseage of velcade was reduced slightly from cycle 2 onwards which helped to relieve the pain. My light chains dropped from 1900 to around 150 after 3 cycles, but when I came off treatment for two weeks due to low blood levels, my light chains started to increase again. Therefore I resumed treatment for a further 3 cycles before harvesting of stem cells. But on due date of second sct in June, I was admitted into hospital with summer flu, which again saw my light chains increase resulting in two further cycles.

After my sct, my light chains were 43 and 56 a few months later, which is very similar to my numbers after my first sct in 2010. Now it’s monitoring the levels over the coming months. I hope Velcade works well for you. I found CDT far worse as regards side effects than VCD.

Regards Jan

[louishenryParticipant]

I moved on to Velcade VCD from thalidomide CTD when the CTD stopped working and found it similar but better, more effective and with fewer side effects, though I still had some neuropathy.

[greg777Participant]

Hi Chris,

I did the VCD regime for 6 cycles last year and I must say I didn’t experience much if any side effects at all. I really hope you experience the same.

Merry Christmas and happy new year to you as well.

Greg

[christaylorParticipant]

Hi all, thank you so much for all the replies in regards to the Velcade, I think now I ve read the Velcade info guide I will see if my Consultant is to recommend VCD , if not I will ask. Seems the better combination .

At the moment I feel I need to get onto some sort of treatment straight away because my bone pain has taken off, both my shoulders now are so painful. My ribs which are always troublesome are hurting more than usual, I did increase my OxyContin dosage from 40 to 50 but was very nauseas so went back to 40mg. I think I have no choice but to increase to 50mg and give it more time. I expect it will be mid January because of the holiday period before I get the results which is very worrying , I hope I don’t get anymore fractures.  Again thank you and Merry Christmas.

Regards CT.

[Author]

Posts