[faithoverfear]

Re: VTD-PACE - what to expect?

by faithoverfear on Wed Feb 01, 2017 2:50 am

Hope this is not too late...

I went through VRD-PACE followed by an autologous stem cell transplant about 16 months ago. In my case, the M-spike went from 0.5 to 0.4 g/dL (5 to 4 g/l). An autologous stem cell transplant does not yield results for everyone.

After 16 months we are still trying to sort out the negative side effects of PACE. Prior to treatment, I could bike 50 miles in a day, Now I can slowly walk three miles on a good day. The risk factors that are included in the consent form are only the most dire factors. If you want to know what you're really getting into, ask for adverse event level one, two and three risk factors. You may still decide to go ahead, but at least you'll know what you're getting into.

Wishing the best for you.

[faithoverfear]

Re: VTD-PACE - what to expect?

by faithoverfear on Sat Mar 10, 2018 12:30 pm

Update: Two years after VRD-PACE, the only remaining side effect is decreased heart capacity for exercise.

[faithoverfear]

Re: VTD-PACE - what to expect?

by faithoverfear on Wed Mar 27, 2019 10:58 pm

Update March 2019

Turns out that VRD-PACE appears to have damaged my aortic valve. Echo cardiograms are con­clusive. Six weeks ago a new valve was inserted into my old valve. Near immediate im­provement.

Well, this appears to be the end of the VRD-PACE saga. Glad it's over. Do wish I could get the last three years of my life back.

Still, this may be an appropriate treatment for some people in some situations. Just know that the quality of life factor can be significant.

Wishing you all well.

[TerryH]

Re: VTD-PACE - what to expect?

by TerryH on Thu Mar 28, 2019 9:54 am

Thanks for the update, faithoverfear.

I'm sorry to hear about the issue with your heart valve. Have you been treated with Kyprolis at any time in the past few years? If so, have your doctors considered whether the heart issues you've experienced might be due to Kyprolis, rather than the doxorubin in the VRD-PACE regimen?

Here's a link to one of the forum discussions related to potential cardiac side effects from Kyprolis:

"Heart-related side effects from Kyprolis" (started Jan 8, 2018)