NHMike wrote:Radiation was tough but I would consider it easier than six rounds of FOLFOX. I had pain, holes, digestive issues and the feeling that I need to go but that all faded two weeks after it was over. It shrunk the tumor by over 90%.
There were a lot of time when the feeling that I needed to go was the tumor. It was hard to tell if you really needed to go or if the tumor gave you the feeling that you needed to go.
What helps is when you feel it getting smaller and can see pieces of it coming out. That was about three weeks for me.
Your story is so encouraging right now. Chemo radiation just began, and my husband is already sick and in pain - and i don’t dare share with him how it gets worse. Tonight i am ordering some cream I read on heat that works well for some - it’s CALMOSEPTINE. Any thoughts on that?
Also, my husband feels he has to go all the time, but it’s the tumor much of the time that is giving him that sensation. Did you mean you actually saw parts of the tumor break off!? I wanted to alert him if so. Maybe it will be at least a little encouraging.
Did you use a bidet? Do you recommend one? I could get it set up now.
Thanks for any advice from you (all).
I did not use anything for radiation but I did order Calmoseptine, Cavilon Barrier Cream, and Lantiseptic Skin Protectant after the reversal. I only opened and used the Lantiseptic and that worked quite well - I never did try the other two products though they are somewhere in the house. Cavilon and Lantiseptic are barrier products - they work by preventing stool from touching the skin. Stool can be quite caustic to the skin. I don't recall what Calmoseptine does. All three were recommended for after the reversal by people on this board so I bought all three.
The tumor coming off looked like white flakes in the toilet. Sometimes they had a little red in them.
I didn't use a bidet. I can see the benefit of using them as toilet paper is pretty rough on the skin after a while. If he uses toilet paper, I'd recommend dabbing as opposed to wiping. I also used Depends Shields. These are men's pads which can prevent small amounts from soiling underwear. I imagine that women's thin pads would work as well.
After the reversal, I bought three sets of Perineal Lavette bottles. These bottles are typically given to women after childbirth to clean without having to wipe and they work like a bidet - but you can carry them with you. I bought a small medical kit and I carry these bottles around in that medical kit along with pads, plastic bags and two diapers. It's basically an emergency kit. I don't use the latter things very often but use the peristalsis bottles daily.
One other thing that I'd recommend is a seat cushion similar to https://www.amazon.com/gp/product/B01EB ... UTF8&psc=1
as it takes pressure off the area getting the radiation.
Perineal Lavette bottles: https://www.amazon.com/gp/product/B07B9 ... UTF8&psc=1
Calmoseptine Cream: https://www.amazon.com/gp/product/B00BC ... UTF8&psc=1
Cavilon Barrier Cream: https://www.amazon.com/3M-Cavilon-Durab ... hpc&sr=1-4
Lantiseptic Cream: https://www.amazon.com/Lantiseptic-Orig ... 140&sr=1-3
I'd recommend getting the okay from your husband's radiologist before using any of the creams.