[curiousauntie]

I posted this same post on a thread about bladder spasms (Google took me there as I was searching about B&O suppositories). I am hoping that I will get lots a ideas as I am at my wits end at to what to do for my best friend.

I am right now trying to find info about bladder spasms due to bladder cancer. I am an RN(hospice nurse). My best friend was diagnosed with bladder cancer (stage 3) 5 of months ago. She has not been able to start BCG treatments as everytime she has a uroscopy the cancer has returned (the bladder has to be free from cancer in order to do those treatments). According to a ct scan she had a week ago, the cancer is still localized in the bladder. She had biopsies of the muscle wall in March that were negative for cancer, but that is when the spasms started. She had another TUR about a month ago that showed some cancer in the bladder muscle, so now she has a date for surgery to remove the baldder and have an Indiana Pouch constructed, but not until July. The problem is the intense bladder and urethreal spasms that do not respond to anything. She was taking handfuls of Percocet, as her urlolgist had not clue one how to deal with someone in that much pain. His office staff treated her like a drug seeker. He finely told her to see an onocologist for pain management when she broke down in sobs in his waiting room. I took her to the medical director of the hospice that I work for and he started her on Oxycontin CR 20mg BID and Percocet 7.5/325 1 to 2 every 4 hours for breakthrough. She was also on Urosed (spelling?) for the spasms. She continues to have spasms and now is using Belladonna and Opium suppositories 2 times a day.
My pleading question is...What else can we do? My medical director will do whatever it takes, he is a palliative specialist, and will give us scrips, but what else is out there??? My friend is close to a breakdown, and I cannot stand to see her in constant pain but stupid (her word, not mine) due to all of the narcs she is taking.
Anyone with ideas...thank you thank you thank you...

[doodlemom]

Are the B and O suppositories helping at all?

[AtlantaRN]

I don't have a clue, I was hoping B&O suppositories would work...

[curiousauntie]

The B & O suppositories, at 15mg opium, helped at first, but then seemed to not work as well. She continues to have the spasms and still has underlying pain. I talked to my medical director and he is giving me a scrip for the higher dose suppositories for her to try, but since no pharmacy in the three counties around me carry them ( I know, I called EVERY one of them) she won't get them until Tuesday. Doc said that he would rather she try the higher dose, as they don't go as systemic as an oral med, and if after a couple of days there is little or no relief, then he will up the Oxy CR. She really does not want to keep upping the oral meds as she doesn't like the foggy way she feels, but as a nurse herself (she is an LPN) she does understand that the foggy feeling should lessen as she uses it.
Thanks for your replies.

[doodlemom]

also - I've seen them ordered qid instead of BID.

[curiousauntie]

Thanks Doodlemom, Doc upped them to 3 times a day at the higher dose for now. Slow and steady is his advise. You can do 4 times a day, but shouldn't go higher.

[dbmc]

I remember years and years ago when I was a nurse's aide in a hospital, I had a patient with bladder CA. She had horrible bladder spasms. I remember caring for her and watching the agony that she was in. This may be a stupid question but would a strong muscle relaxant help something like that?

[Allow Mystery]

Sorry that your friend is going through this difficult time, she is fortunate to have you advocating for her.
If you wish to just treat for bladdder spasms, Ditropan XL and/or
Oxytrol transdermal may help without the sedative effect. In conjunction, possibly scheduled dose of Ativan/Xanax may help.
Best wishes to you and your friend.

[curiousauntie]

Thank you all for your replies. I havn't looked at this thread in a while...so I guess I should bring you up to date.
My friend had her surgery in July and did well at first. The Indiana pouch worked wonderfully from the get go. She was healing from the surgery, with only about 10% of the pain she had pre-surgery. The biopsy report for the lymph nodes was encouraging...all negative. About 7 weeks after the surgery, just as she was going for her post discharge check up she began to have vauge pressure and some pain in her pelvic region. After a week it was worse then pre-surgery. She was in U of Penn hospital for 5 days for pain management and sent home. 4 days later she went back to U of Penn for what amounted to a 3 week stay for tests and more pain management. The long and short of it was that the cancer was back, she had numerous large tumors in her pelvic region and it had spread to the vagina. The oncologist offered her palliative chemo, but she knew she had only a very short time left and was not going to spend it sick. There were no surgical options. She came home on Sept 28 and was on hospice with the company that I work for. She died on Oct 5th in her home, with me, her sons and daughter at her side. We were able to manage her pain with Methadone and Morphine and she was comfortable right up to her last breath...exactly what I promised her would happen. I know there are a lot of hospice nurses out there who have never had to go through what their families do. I was one of them. We had been friends for 22 years and although she was closer to my mothers age, she was my best friend. As her medical power of attorny, the hardest thing that I have ever had to do in my entire life (encluding going through miscarragages and divorce) was signing the papers to admit her to hospice. This has taught me lessions I am still discovering and has helped me so much in my work.
So, again, thank all of you for your help.
JOY

[aimeee]

Curiousauntie, thank you for the update. I can only imagine how difficult it was for you to be her advocate and to apply all your lessons from the other side. What a blessing it was for her to have your help.