Advice re treatment options

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Hi,

My husband was diagnosed with muscle invasive cancer earlier this year. Initially he had a TURBT followed by a course of Gemcitamine and Cistplatin. He then had a radical cystectomy in June from which he has made a amazing recovery. We have since had a PET scan and the resuts show pelvic mets and cells on the outside of his bowel lining. He is due to start Atezolizumab this week but we have also been told should we wish to finance Padcev we can have this along side the Atezolizumab. Having read about these drugs both have side effects(which I am sure everything does) we are unsure what to do. Has anyone had experience of either or of these drugs or both combined. Many thanks for any input.

winkers60 3 months ago

Hi pantogirl,Welcome to our friendly group.I’m so sorry to hear your husband’s cancer has spread.I hope the drugs will help.I don’t have any experience of them but I’m sure someone can offer advice.I hope you will find it helpful and supportive here.Best wishes Jane x

winkers60 3 months ago in reply to winkers60

There are references to these drugs if you type the names into the search box if you haven’t already done so.

furbabymama 3 months ago

Hi pantogirl

Welome to our friendly and supportive group. So sorry for you both that you are going through this.

I don't have any experience of chemotherapy but others will be along to give their insights and advice.

Sending you both hugs and positivity ️

Love Ade xx

Chasam 3 months ago

Hi pantogirl,
I do have experience of Padcev which is the brand name for Enfortumab Vedotin.
I’ve been on a clinical trial for nearly 2 years now. The trial is EV-302 and preliminary results show it to be very effective and is being called a game changer and potentially the new standard of care for bladder cancer.
Unfortunately it is not available on the NHS as yet, and my oncologist suggests it may not be in the near future because of cost.

As for side effects I have had my share!
My trial combined EV with Pembroluzimab and it is that combination that is talked of as game changing.
I had both drugs for 10 months but then developed colitis so have since been on just the EV.
My main side effect since then has been neuropathy, both nerve and muscular.
Nerve side is a constant pins and needles and general numbness in feet and below knee. That is not painful, nor does it really affect my quality of life, just very strange.
However the muscular side to it was a problem as it got to the point (once last year and again this spring) that I could not walk up steps without hauling with arms. I couldn’t walk very far and could not play golf.

But is not permanent. I was off treatment from March to mid August and strength returned. Can walk around well, stairs not a problem and am playing golf this weekend.
I resumed treatment 3 weeks ago (cycle 24) and am starting cycle 25 tomorrow.

As part of my trial I get scanned every 12 weeks (I am very lucky to be on this trial for many reasons) and I saw my oncologist and trial team today and received latest scan results and it remains NED.

I know EV is very niche, and think just one other person on this group is involved with it, so if you or your husband wanted a call then I would be happy to do that.

FYI, I am 58 yo male, diagnosed with BC in 2020, had RC, fine for 2 years then recurrence in pelvic lymph nodes 2022 and been on EV since October 2022.

cheers
Chasam

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