Stage 4 metastasized bladder cancer: Treatments not working, help

Posted by johnezlady @johnezlady, Nov 20 3:19pm

Hubby was diagnosed 20 years ago with PVAD artery disease, went thru 3 bypasses on left leg, plus stomach aneurysm, all in a 5 year span so he's been on blood thinner and asprin for that long.

Now actually its been 3 1/2 years ago my husband peed filled toilet full of blood, his sister and I told him he had passed a kidney stone, boy were we ever wrong, 1 year later exactly he called me from work to come get him he could not urinate, took him to his md, they did blood work sent us straight to the hospital, who did more blood work and sent us to urologist right away, urologist did scans told us it was stage 0 -1 bladder cancer, went in and scraped bladder, re-did scans saw that there was new growth so went back in and re-scraped bladder, did more scans then set hubby up for BCG treatments, 6 weeks of those, hubby had awful side affects but did finish the 6 week treatments crawling to the toilet to throw up and use the bathroom, we go back to the dr he then said cancer is still growing hubby would have to have bladder removed (BCG treatments did no good), (keep in mind this dr had awful bedside manner) in between scrapings their was infections so within a years time hubby was in and out of hospital, hubby decided he wanted a second opinion crazy thing was his oldest brother was diagnosed 1 week b4 him stage O bladder cancer, his brother had been telling his dr what was going on and his dr said their was a possibility bladder could be saved>

(Brother update he did BCG it worked perfect for him he's cancer free, is checked every 6 months right now) So hubby went to see brothers dr for second opinion. Totally loved this dr. great bedside manner, this dr sent hubby for all kinds of tests was so upbeat everytime he saw hubby which was important, it boosted his spirits, this urologist told him his cancer had went outside of his bladder into his prostate and uretha,(Bummer)

oh and now hubby can barely walk, (Right leg stopped up again so off to vascular dr we go) and Mitchelle Cancer Center in Mobile, Al...Met cancer dr's he would use for treatments,

Jan 2024 he has 2 stints put in left leg which puts off chemo for 4 months, They finally do 1 chemo treatment hubby is in hospital awful side affects, enlargment of heart non stop throwing up going to cancer center 4 times a week just for fluids, we do this for a month, they start second chemo treatment within 20 min his side affects were so bad they stopped chemo all together! (He cannot have radiation),

Oh forgot to say he had a tumor so large it blocked his right kidney and had to have tube placed in his back for 3 months for urine to come out that way (the kidney) was trying to die so in and out of hospital for that with infections, pulled it out one time!!! Urologist orders a pet scan, Scan shows cancer is in lymph nodes in different areas, in bladder,1 possiable spot in liver, in prostate, in uretha we are now a stage 3-4 mestasized, So here we go they biopsy the liver spot it comes back good.

Now were back in hospital for bladder, prostate and uretha removal also lymph node so they could biopsy, this is in Aug 2024 we are right at 2 and a half years into cancer diagnosis, surgery was so long they decided to wait on uretha removal, 3 months of recovery, and guess what he can hardly walk other leg is stopped up....

2 months ago they started immune therapy, yep you guessed it awful side affects, hands swelling, legs, feet did a scan and heart, throwing up etc he goes once a month for this treatment, so far he has done 2 and in between he has seen 2 specialist for these side affects, Last week on the 11th they did second pet scan, Cancer Dr calls in the next day, the scan is now showing the cancer is def in his liver, his bones, his lymph nodes above his collarbone, left kidney, behind his stmouch, groin,, its in the bony structure connecting the sacrum to the ilium......Dr tells him so far everything they have done has not worked, (No Duh) he goes Dec 4 for his 3 immune treatment, dr said they will talk about what they could do next....

Can someone please tell me WHAT IS NEXT? Has anyone else been thu all of this where nothing works? Hubby did lose abt 45 lbs after this last surgery, I understand this is normal, he put 10 lbs back on he is a big man so the weight loss was ok for him, but I can see again where he is losing is appetite to live? He feels bad all the time he tries to do things but is so exhausted it weakens him even more, what is next for him?

I have no one I can ask, every time I try to get answers from his Drs they just talk around it, is he going to make it, how much longer would he have if this doesn't work, is there anything else they could try, I and my son have been researching the internet but can't find any answers, is their someone else that has been thru this? It is like his own body is stopping him from getting any better.

Please keep in mind I am his sole caretaker, I'm exhausted and still searching for answers, I've asked his syblings 2 brothers and 1 sister for help,(Crickets) I've asked his pastor for help who by the way is his cousin, no help. Everyone likes to offer or call and check on him but no one shows up, trust me I've got this, I have spent the last 10 years working on building myself up (He was not the best of husbands, we have been together 25 years) I put that aside, He genuinely needed me when he got his diagnosis, so is their anyone who can tell me what the next step is for him and for myself, I want to prepare the both of us.

Thank You to all who read and respond I'm so sorry for the long post I guess I needed to get it out of my system hoping someone would read it and help me to understand...

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

@johnezlady, that was a lot to write and get out of your system. I'm really glad you shared everything here. This is a really tough situation to deal with on your own with little support for YOU the caregiver.

You ask a really important question: WHAT's NEXT?

It is hard to watch a big man not eating, losing weight and losing interest in eating. It sounds like his doctors are hopeful that immunotherapy may help. You may wish to also ask about getting support from a palliative care doctor who can help manage his side effects.

Have you talked about palliative care with your husband's cancer team? They may also have services for you, the caregiver, such as an oncology social worker who you can talk to. Has anyone mentioned an oncology social work support for you?

REPLY

Hi Johnezlady,

I, too, have Stage 4 Metastatic urethial cancer. It started in my right kidney and was UTUC - Upper Tract Urethial Carcinoma, which is very rare - 1 in 50,000 North American cases. I was fortunate that I was in good health with no medical issues when it started. I had 4 cycles of Gemitabin/Cisplatin (no side effects), kidney removal, and 12 cycles Nivolumab immunotherapy in 2022. Cancer showed up in bladder in early 2023, bladder scrapped, BCG treatment (no side-effects) tumors returned as invasive, bladder scrapped, 4 cycles of ddMVAC (lost hair, no energy)- invasive tumors present within 3 weeks of end of chemo. Bladder and reproductive system removed in February 2024. MRI showed metastatic disease in right iliac bone and throughout pelvis and what was left of vagina in March 2024. Radiation for bone cancer (pain gone after 2 months). Gemcitabin/carboplatin for 6 cycles which were often delayed due to infections in remaining kidney (all that is left of urinary system). Nephrostomy tube inserted in July 2024 as the urinary diversion stoma blocked. Tube still in place, diversion blocked by ureteral stone. Major bone pain returned , blood within the cancer lesion, which is very rare. Blood drained, cancer cells found. MRI shows progression of cancer in pelvic floor, vaginal vault, rectum wall, major pelvic floor muscle. Sciatic nerve under pressure - walking hurts!

What happens next - 5 cycles of radiation for pelvis, 8 lighter cycles of radiation for iliac bone (only allowed 2 treatments). Follow up CT scan in February. If cancer is still progressing, then it is the last resort chemo - Fortumab. This one is only allowed if you have already been through at least one Cisplatin treatment and immunotherapy treatment. Currently worst case scenario is 1 year left. I am in Canada and have medical documents in place for Medical Assistance in Dying, when the pain becomes unbearable after the last chance treatment. My body, my life, my death the way I want.

Ask about radiation treatment for the pelvis area and bone. Very little side-effects. It might reduce the pain and progression if only for a few months. If his immunotherapy is Fortumab, then that is all that is left at the moment. If not, it will only help for awhile.

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