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Ulcerative Colitis
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Posted 7/5/2022 6:30 PM (GMT 0)
Hi friends -
I thought I'd give you a progress report. As I undergo chemo for a recurrence of colon cancer (4 1/2 years after my colon was removed and I had 6 months of chemo) there is good news! The soft mass, in the right side of my pelvis, has stopped growing. The doctors are thrilled - this was almost beyond their hopes for this early in the chemo-to-shrink-it regimen.
So I continue with chemo to hopefully actually start shrinking it. The thing is, according to my surgeon, the mass is touching the J pouch, so he wants to shrink the mass so he can remove it with minimal damage to the J pouch.

The chemo is not fun; for a number of days between the sessions (every 2 weeks) I have horrible gas and diarrhea. It feels like UC again, except that because my mucus membranes are being attacked by the chemo, the soreness on my bottom is even worse. Ugh. I'm taking 8 lomotil a day, and will now start adding immodium in between. We have some family visiting in the next few days, to see our new home, so wish me luck!

Hi to all! Hang tough!
Posted 7/5/2022 7:56 PM (GMT 0)
Wishing you the best, Song! Hope the chemo does its job quickly so you can beat this thing again. Sorry to hear you are feeling so crummy.
Posted 7/5/2022 9:53 PM (GMT 0)
Rats! Very sorry that you have these chemo miseries, Songlady. I keep wondering why the docs can't adapt the so-called "pencil-beam" radiation to internal cancers since it seems to work so well for early-stage prostate malignancy. Have you tried any baby-intended products on sore bottom? I can imagine that the prospect of house guests doesn't thrill you while such discomfort plagues your nether region. Keeping you in my thoughts and following your updates. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 7/6/2022 12:21 AM (GMT 0)
Really sorry you're having to deal with this. Good to hear there was some good news though and the doctors are hopeful. Hang in there!
Posted 7/6/2022 3:05 AM (GMT 0)
Hey song, it's so good to see you. I am sorry to hear you're going through chemo. I am happy to hear it sounds like the response is better than expected. I really hope you're back in great health very soon.
Posted 7/6/2022 7:10 AM (GMT 0)
Hi song, I'm really sorry you are having to deal with this mess. There is NOTHING fun about it, but it does sound good that things are progressing positively. Hang in there and God bless you. Feel better soon.
Posted 7/6/2022 12:02 PM (GMT 0)
So sorry you are dealing with all of this. Hope that the chemo does the trick and you won't have to do it for much longer. Fingers crossed that it doesn't damage your j-pouch, but do your docs have a plan in case it does?
Posted 7/6/2022 5:27 PM (GMT 0)
I don't know much about chemo, but it's impressive that the mass near your
j-pouch is responding to the treatment. Is there a specific size it has to meet before removal or just to not be near the pouch?

It's good your company isn't staying too long as to cause too much stress...hope the imodium does its thing so you can get through the time without too much discomfort.

Your strength is enviable...huge hugs,
q
Posted 7/6/2022 9:34 PM (GMT 0)
Song. Prayers going out to you.
Posted 7/7/2022 4:20 PM (GMT 0)
Hey Songlady,

I'm sorry to hear the new diagnosis. If the Lomotil & Imodium aren't working then you might want to "try to get" a Tincture of Opium script. It can be difficult to get prescribed and filled but it was the only thing that slowed me down when I had my loop ostomy.

Pepto helps with my gas and my j-pouch.
Posted 7/8/2022 9:50 PM (GMT 0)
Thanks for the update! Hang in there! Keeping you in my thoughts and prayers!
Posted 7/23/2022 10:51 PM (GMT 0)
Thanks for your comments, everyone! I had a rough time that chemo cycle. The docs decided to leave off one of the components - Avastin - this last time to give me more time to regain my stamina. So these ast few weeks have been lovely!
Keith: this doc actually mention Tincture of Opium! But what the PA prescribed "to try" is hyoscyamine sulfate. This has been like magic for me, cutting way down on pesky gas and frequency. The doc also gave me a MMJ card! I brought up the topic because my son Songboy is employed at a dispensary. He said that there have not been big enough clinical trials to prove to him that this can actually help combat cancer, but he has heard from patients that it can help them feel more cheerful or sleep better. He said it didn't interact with anything I'm taking, so why not, if I wanted to?
OH - Not to get too graphic, but the hurting place is in a place one generally cannot reach with creams. It's about an in or 2 two, I believe. But it has healed a lot this week. I use a lot of calmoseptine cream otherwise - there's good info on this kind of thing among J pouch circles.
I hope everyone is managing to stay cool enough wherever you are!
Posted 7/24/2022 7:04 AM (GMT 0)
You are a dear friend, Songlady, to wish us all well in the Northeast heat wave! Glad to read that you're getting a bit of relief from chemo side effects. The painful place you describe might be helped by Proctofoam HC if you can get an RX, or for any such insert containing Pramoxine. I've noticed on my chain drugstore rounds going back about a year that some OTC butt lotions now contain 5% Pramoxine-- so it might be that a stronger RX insert is now available, too. (Proctofoam HC has 1% Pramoxine + 1% Hydrocortisone.) *** BTW, today a relative 20 yrs my junior e-mailed to ask if he, wife, & college-age kids can invite me to breakfast/brunch 2 weekends from now when they travel to my big city. [sigh] They know I have UC, and his wife is a physician besides. But they're always ready to roll out the door by 6 AM so I replied that I'll likely be available 11 AM+ ... why do they still expect senior me to want an early AM restaurant meal on a weekend, ugh? (Didn't want it with active UC, and still don't want it in remission!) *** Hope you can continue on a more tolerable regimen, my fingers crossed for that, and please keep us updated. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 7/25/2022 2:28 AM (GMT 0)
Song hope all the best for you
Hope the move went well?
Trying to stay cool here in the cooked Apple. Hope you are too
Keep us updated
😊🙏😊
Posted 9/3/2022 6:47 PM (GMT 0)
Hi All!
Just an update. We have mostly unpacked and are enjoying our new home. We are near a lake and have been using our very old, very heavy canoe, and we just bought lightweight kayaks for even more water fun!

Scans show that the chemo has stopped the cancer from growing; it is what the doctors call "stable." At this point, they are thinking that I should finish this long course of chemo - I'm just over half done - and then they'll move me to a much reduced dose for maintenance. Cancer as a chronic condition! Well, I sure know how to do "chronic" lol! I've heard of several people doing this. The reduction of dosage would get rid of most of the side effects, but keeping some in my system would hopefully keep the cancer at bay. My doc has several people on this protocol, one who has been living this way for 18 years!

At this point, the surgeon does not think surgery would be the answer. The cancer is indeed the same colorectal cancer I had before, but it is attached to the ovaries and then has some individual spots - "like grains of sand" - on the abdominal wall. They could do a hysterectomy, but the specs on the ab wall might be impossible to totally remove. So this chemo way sounds better. (And has been mentioned above, surgery doesn't always leave one "as good as new." )

My new team prescribed Hyoscyamine (anti spasmodic) and it has been life-changing. Bentyl never did much for me, but this has been amazing! I can now appreciate what Bentyl has done for those for whom it has worked. My BMs immediately went from 20 a day to 10, and the irritation and inflammation that was so painful began to heal up.

OH, how did you make out with the guests?

I hope you are all doing well! Hang tough, team!
Posted 9/4/2022 6:19 PM (GMT 0)
songlady, glad to hear from you. It sounds like the move to your new house was a positive direction for you. I love being around water, I think that was my only way I could truly relax. We are lake people, a few years back we bought a little cabin on the lake, it's not too far from home so we can make the great escape whenever we want.

It sounds like your dr has a decent plan, I do understand the reasoning for not doing surgery. Let's hope & pray that you finish up the the chemo & then be able to go to the lower dose for many, many years.

We always look forward to your updates.
Posted 9/4/2022 7:25 PM (GMT 0)
Songlady...great to hear you're fully moved in and enjoying the adventures in the new location.

My husband has a friend who has been on long term chemo treatment for 3 years ...while the doctor isnt happy with it, he has been doing well with good results. I didnt realise it was a possibility until his situation. He's tired the day of, but very active otherwise at 75 yo.

I'm impressed that the Hyoscyamine has made a huge improvement in bms...but Im not clear on where exactly the inflammation was. What dosage are you on? And are you having any side effects from it?

Hugs...looking forward to your next update 🤗
q
Posted 9/4/2022 8:24 PM (GMT 0)
Hi, Songlady! So glad to hear that you're enjoying the new home + lake. Also that you found some relief from multiple bms/sore butt syndrome, The Pits! RE longterm lower-dose chemo: I haven't heard about that option, but a relative's wife who developed metastasized melanoma by her late 50s was able to enroll in a longterm immunotherapy clinical trial that ultimately helped her to survive into her 90s, and she had a generally good quality of life. She had periodic infusions that wore her down for a few days afterward, then she would recoup sufficient energy, and she had to undergo PET-scans as part of the trial monitoring. *** In answer to your Q about my unwanted breakfast/brunch invitation, the couple involved contacted me a couple days before their proposed trip to city, when our weather had turned hot and steamy. So I told them politely that I had to cancel out of their plans. (Plus I had gotten kitchen ceiling leak damage from irresponsible upstairs neighbor that made in-home visit unattractive.) Hopefully they won't propose any future breakfast/brunch outings because that's my most inacceptable time to socialize, in general. *** Definitely keep us updated because we do miss your input here on the forum, and wish you steady progress in your current treatment. Cyberhugs! / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 9/5/2022 2:44 PM (GMT 0)
Glad to hear the move went well. Hope this chemo regimen long term is the answer. My mom’s business partner has been on a similar regimen for prostrate cancer that spread to his bowel and bladder. The first 5 years of heavy on and off chemo were rough but that was 25 years ago and he is still going strong at 77 with the low dose chemotherapy.
Posted 9/5/2022 3:14 PM (GMT 0)
Hi all - OH, Mom, Q - thanks for the stories of long-term chemo users! That may be my new tribe.

Q, The inflammation is throughout, and it is caused by the chemo. The chemo attacks my mucus membranes. I have bloody noses, a dry mouth, scratchy throat.... and irritated intestines, J Pouch, and anus. I'm having the biologic, Avastin, every other chemo now (rather than every time) because it's so hard on me, but I am still having it at all because hopefully it's hard on the cancer. On those weeks there are days my J pouch feels so inflamed and I have bleeding hemmies. (OH, calmoseptine and a lidocaine gel are my go-tos, as well as having a bidet!) The bottom rectal area becomes so inflamed that if there is any waste at all in my J pouch, I feel urgency - hence going to the bathroom many times just like in a bad UC flare. But then as the days of the chemo cycle continue, it gets better. And the hyoscyamine helps all through. The only side effect I've found is that one day I took an extra pill and was a bit dizzy. (Dizziness is listed as a possible S/E.)
OH, visitors....! We have had a number of them since moving, because (straydog!) we are walking distance to a large lake here is "Vacationland." People do rapid COVID tests before visiting, (Not that those are so reliable) but still, I'm not always comfortable. But I dearly love seeing friends and relatives, so I make my choices. We have a large screened porch, so that's where we entertain. Straydog, I was up in the night and heard the loons calling! Lovely.
Posted 9/6/2022 3:02 AM (GMT 0)
Songlady, I didn't know you had cancer. I'm glad it's treatable, but I do hope the lower dose of chemo has far fewer side effects. I never found Bentyl to help either, so I'm going to look up the med that you mentioned, hyo something.

I've always wanted a cabin by a lake >_>. Not really loads of lakes or cabins in the south east of England but I won't let that stop me from dreaming!
Posted 9/8/2022 6:37 AM (GMT 0)
I'm glad to hear you got settled in. Your new place sounds lovely. Loon calls are beautiful, aren't they?

Your doctor's plan sounds like a good one. I hope your side effects go away or lessen as soon as possible. That sounds really rough.
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