Advice re treatment options

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

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

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

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

Hi Chasam

i have followed your posts with interest for some time - FYI, 43 years old - currently on Enfortumab Veodotin for 9 months.

Over the last 3 months, I have experienced significant muscle weakness and loss of strength, I can no longer walk up stairs and general walking is a challenge with multiple falls a day.

I notice you had similar muscle weakness and was wondering how this was diagnosed as neuropathy and was there any specific treatment other than break from EV (which I’m reluctant to have)

Many thanks

scott

Hi Scott,
Sorry to hear you are having the same muscle weakness I had twice.
When it happened in 2023 I saw a neurologist who performed some nerve tests by applying shocks to my legs and arms to test for response. He also put a needle into different leg muscles to test response. That confirmed neuropathy so I was referred to another specialist, but by the time I saw her (a month or so later) as I had been off treatment my strength was back.
Nevertheless, she asked questions and suggested it was Sensorimotor Polyneuropathy.

She said if it recurred there could be treatment. It did recur after a year and I had same nerve test, but again with a treatment break of a 3 months strength returned and I did not see the other specialist again.

My oncologist then reduced my EV dosage and I resumed treatment in August and have remained on my 2 weeks on/1 week off cycle since. 
Am starting cycle 30 tomorrow, and although I still have neuropathy in my legs and feet it is just pins&needles and numbness and I’ve kind of got used to it and it doesn’t affect anything I want to do.

Really interested to know more about how EV is going for you aside from your muscle weakness. I assume it is via insurance as am not aware of other trials and sure it is still not available on NHS.
I totally understand you not wanting to stop taking it. Perhaps try a lower dosage?

Maybe we could have a call at some point?

Cheers
Chasam

Hi Chasam,

Many thanks for the reply, it’s really appreciated as there is such little data/information available on the longer term use of EV.

My case is slightly unique, I was diagnosed out of the blue two years ago after suffering some back pain related to backed up kidneys. I had no other symptoms and all the doctors were shocked when a prostate biopsy came back with muscle invasive bladder cancer at 40.

I had 6 cycles of GEM/Cis followed by 7 weeks of radical radiotherapy. This completely resolved the the bladder, prostate and lymph nodes which have remained that way since. Unfortunately, at diagnosis there were a few olgimetastic lesions on the pelvis which were dealt with under radiotherapy but returned, along with a spinal lesion which fractured, after 7 months on immunotherapy (Avelumab). We debated re-treating the lesions with radiotherapy but felt the most aggressive approach was to use Enfortumab, which I have been on since.

My current protocol is 3 weeks on, 1 weeks off at the maximum dose, 1.25mg per kg.

You are correct, the treatment is funded via insurance. I finished cycle 9 (27 doses) just prior to Christmas. I have had a good response with a reduction in all lesions and stable disease. Some side effects, hair loss and thinning (including all eyebrows and eye lashes), skin sensitivity and neuropathy which has got progressive worse with treatment. I had a CT, DEXA and spinal MRI on Monday, to rule out anything, and providing all is well, I will continue with the EV - possibly at a lower dose after an extended break.

Would be happy to connect directly, I’m also happy to help anyone else if they have questions.

All the best,

Scott

Hi Scott, hope all is well.

I was treated for prostate cancer in 2011, 37 x 2Gs, however, the radiation seems to have entered my bladder. In October 2022, I was diagnosed with MIBC.

The Senior Surgeon suggested due to complications, bowel wall extremely thin, if I had a RC, I would probably require two stomas! I declined the operation.

I cannot receive any more radiation to the pelvic area and wonder if there is an alternative for patients in my situation!

Hi Brylynne

Sorry to hear you got cancer for a second time.

Have you had any chemotherapy or immunotherapy for the MIBC?

I know the standard of care for non-rescectable and metastatic bladder cancer was Chemotherapy, usually Gem/CIS, followed by immunotherapy with a PDL1 inhibitor, usually Avelumab.

In 2024, Enfortumab Veodotin and Pembrozilumab were proven to be more effective int the first line setting compared to traditional chemotherapy and will now become the standard of care - if you did not receive chemotherapy initially, you could rechallenge your oncologist with this?

In addition, the radiotherapy for your prostate was 14 years ago, whilst I suspect some of the bladder may have been in the indirect radiation field, it is unlikely it would have received the full dose which was assigned to the prostate. Could you also question with your oncologist whether they could use a more directed type of radiotherapy called SBRT directly to the bladder tumour?

 Lastly, and maybe this is for future down the line but are there any clinical trials opening which you could participate in?

Cheers

Scott

Hi Scott, many thanks for your wonderful reply, that is a breath of fresh air to me.

I had three cycles of chemotherapy in 2023, gemcitabine and cisplatin.

They said they would continue to check that it has not spread with CT scans.

Luckily, it has not spread.

I am waiting for my TURBT results from 15/12/24.

They told me I could not receive any more radiotherapy to my pelvic area.

It would be quite wonderful if they have a new method to treat me using radiation!

Thanks once again and I hope you are free from cancer for the rest of your life.

Kind regards, Bryan.

P.S. I am hoping to get back to doing private tutoring, all the money goes to a children's charity, Candlelighters, that's what I did prior to my MIBC diagnosis.