The Colon Club

Can someone tell me what actually happens? I'm getting ready to talk to the oncologist Wednesday afternoon and am trying to figure out exactly what happens during these treatments. I realize that different treatments are different but I'd really like to hear about some first hand experiences.

I've googled and I get that there is a machine involved, much like an x-ray machine but I'm more interested in details. Do you undress? How long does it take from waiting in to leaving (on average)? Do you go every day? For how how many days in a row? Was it cold or uncomfortable in any way? Can you listen to an audiobook during? Is there anything you bring with you to make you feel better/more comfortable.

Do you get sick? When in relation to the treatment? I need to keep working if I want to avoid homelessness so I'm trying to figure out the best way to make this work for me.

I found this. Does it match your experiences? https://www.cancer.net/navigating-cance ... on-therapy

Can you think of anything I have not asked about that I should?

Most people do chemo in pills right?

Are you doing chemo or radiation or both? I think that would be the first thing to find out. I don't know much about radiation as my boyfriend has only had chemo. Some people get chemo in pills, others get it intravenously. My boyfriend has a little port that is semi-permanently placed under his skin on the right side of his chest. Some of his chemo is infused through this port at the hospital, and then he gets a little bottle of chemo attached which slowly pumps a different chemo into his veins for the next 46 hours. He can do normal things while wearing the little bottle, he just needs to be careful when showering and sleeping, as he is attached to it at all times.

Sounds scarier than it is. As far as side effects, I think it's different for everyone. A lot of people keep working. I think many people take a few days off, as side effects tend to be worst for the first few days.

As I said, I would find out exactly what treatment you'll be getting and then research that. You can google it and search on the forum (a lot of your questions will probably already be answered elsewhere) and keep asking on here too. We'll do our best to guide and help you!

I've only done chemo, so here's how it works for me.

Show up at the hospital to get my port accessed and labs drawn.
Go visit with my oncologist. She reviews my bloodwork and if everything is within the normal limits, I go get chemo.
I'm given some anti nausea and steroids before they hang my bags. Depending on what they give, the infusions can take between 30min and 2 hours.
I go home with a pump of 5FU, looks like a giant lemon.
Two days later I disconnect myself or go back to the hospital to get disconnected and an on body injector placed that will go off the next day.

That's about it. While I have my ball of chemo at home, I stay on the anti nausea and steroids. If I get the on body injector, I take claritin the day before I get it and a few days after.

Hope that helps!

My husband had radiation, 5 days a week for 4 weeks (I think). He was tired and felt nauseated right after, but felt better after a couple of hours. It was pretty fast, 15 minutes each time maybe? Of him being in the radiation room (which included undressing, etc). The actual radiation was only a few minutes. When he went to OHSU for SBRT, the radiation lasted longer, but he got a larger dose for 3 days and that was it. Same side effects, nausea and fatigue, but nothing too bad. Good luck!

Of course everyone’s experiences are different, but radiation for me was - in a word - boring.

I went in every weekday for 5 weeks (25 sessions). Each Friday they’d give me my appointment times for the following week; I asked for morning appointments to get it over with. About an hour before the appointment I had to drink 750ml of water so I had a full bladder. I’d then drive in (about 15 min away), park and register at the reception desk. They were usually running late - but maybe only 15 min if I was lucky. I would go through, get changed into a hospital gown, and take my belongings with me. I could leave my pants/shorts on if they had no metal in them. I would lie on my back and they would move me into place using the table, lift the gown and lower my shorts, and use a use a laser to line up the machine with the 4 tiny tattoo dots I had done during the simulation. They would also take a few measurements to make sure I was in position. The process of getting lined up took maybe 3-5 mins.

They would leave the room, the machine would do a short cone beam CT scan, then start the treatment. I felt nothing, but could hear the machine as it did it’s thing. It wasn’t cold or uncomfortable; the table was a bit hard but nothing bad. The most uncomfortable part was lying there still with a full bladder and needing to pee. I don’t think you’d be able to have earphones or anything as they don’t want you bringing anything metal in.

Once done I would dress and leave. I was probably in the treatment room for 15 min; the whole thing took maybe 30-45 min depending on how late they were.

Whilst I was doing radiation I also took Xeloda (capecitabine) tablets in the morning and evening, with food (1500mg twice per day). I didn’t take these on the weekends (as I wasn’t having radiation).

In terms of symptoms, for the first 2 weeks I had none. I found I would feel a little bit nauseous if I didn’t have a proper meal before the Xeloda tablets. In the 3rd week I started to develop some cystitis-type pains, diarrhea and general soreness around my rear end. The cystitis went away quickly, but the diarrhea and soreness remained until about 2 weeks after finishing treatment. I was very tired in the later weeks - most of the time I was OK but there were I couple of days where I pretty much just slept.

The two most helpful things for me were using a bidet attachment for the toilet to avoid wiping, and using MooGoo cream twice a day to help prevent any skin damage. There are lots of tips for handling radiation at this thread: viewtopic.php?t=32621

After radiation, I had a ‘complete metabolic response’, meaning no cancer cells were visible on a PET scan (but some still suspected to be present, which pathology later confirmed).

Hope this helps, and good luck!

Rob

Thank you so much for sharing. It's so helpful. I'll be doing radiation and chemo but won't know the exact schedule until I meet with the oncologist Wednesday afternoon.

Hi,

I just completed my Radiation/ Chemo treatments today.
Hopefully I can give you a little insight as to what it is like.

I had 28 Radiation treatments and the Chemotherapy I took was Xeloda which is an oral tablet.
Side effects vary from person to person depending on your age, and health.
I was very fortunate and had only a few side effects. This forum is an excellent go to for information, but please make sure to not over read as you will worry yourself unnecessarily.

My treatments were at Smilow Yale New Haven.
The 1st time you go to the Radiation treatment center they will place stickers or small tattoo dots in your targeted treatment area.

My treatments were 5 days a week with weekends off. I would take oral chemo - Xeloda twice a day on the days I had radiation.

I was told to drink 16 oz of water a 1/2 hour before treatments to keep your bladder out of the way.
When I arrived for treatments I would check in and go to a changing room and change into a pair of disposable shorts, i was able to wear my top and socks.

I usually didn't have to wait more than a few minutes for treatments.

The radiation machine is open, i would lay on a padded platform face down with my hands over my head. It takes a few minutes for the team to get you in the exact position.
I don't think you will be able to wear headphones while getting treatments. There was always music playing during my treatment. You will have to remain still during treatments but for the most part it usually lasted 5-10 minutes. You will hear a sequence of buzzing sounds that will move around to the targeted spots. You won't feel anything during your treatments.

Immediately after treatments I would apply Lubriderm lotion to the areas that the radiation targeted. Aquafor healing ointment down below. I had a problem with hemorrhoids during treatments which was the most uncomfortable side effect. I had quite a few methods to try to alleviate the discomfort but none seemed to help.

Drinking sufficient amounts of water and moisturizing are key. Also diet and rest.

Ask questions, make sure you have a notebook/ diary to write everything down. It's also helpful to have someone with you at Drs appointments. There is a lot of information to remember.

Relax and take a deep breath... Take it day by day and it will pass quickly.
There is a whole community here with a wealth of knowledge to help you through.

Dani

Ulendon- It’s like what Rock_Robster said.
I drove myself to the radiation oncologist each day for 5 weeks. After the quick treatments I drove myself 30 minutes to work. You don’t feel the radiation directly.
They required me to be on chemo as the treatment is a combination of the 2. Today a lot of people take the oral Xeloda pill, but I was on continuous infusion of 5FU. I wore the small pump on my waist. It pumped into the power-port on my chest.

The EFFECTS of the radiation are felt and the combination can cause diarrhea. The chemo builds up and after a while you get tired. It is good to keep to a normal routine as much as you can. Keep upright, walk, get fresh air and sunshine. They will advise you on diet. If you lose your appetite they suggest BRAT: Bananas, rice, applesauce & toast.

In summary: treatments can be yechky- but are worth tolerating to kill-off the cancer.

I did 25 days of radiation and chemo pills before surgery.

I was told to have a full bladder, and that was the most difficult part for me to manage. Either I was too full or not full enough. I probably hit the “sweet spot” a handful of times.

I would go in with my own clothes, pull my pants down to my knees and lie face down on the machine.

The machine goes through its start up process, then would spin around me once, then spin around back the other way and then I was done.

I had very few side effects compared to what I’ve read on here. I expelled a great deal of mucus, was reluctant to trust a fart, and had some mad dashes to the toilet. I got very sore in the Anal region near the end of the treatment, like maybe session 22 or 23. I had pain for about a week following my last treatment.

Maybe TMI but I had greatly reduced volume when ejaculating, and actually since my surgery and mop up chemo my sex drive is virtually zero. I hope it comes back in time. I’m about 11 months post radiation, 8 months post surgery and getting close to 5 months post adjuvant chemo.

Since surgery I’ve also had pretty terrible back pain due to 1 badly herniated disc, and two others that are degenerative. I was basically bedridden for months. It’s still bothering me, though not as bad as it was. I’ve been going to physio but my endurance and fitness levels are very bad right now.

It’s a grind getting through treatment, then another grind getting over it.

Getting back to the radiation, one thing I did not use at all for probably a good 6 months was toilet paper. I jumped in the shower every time. Of course after surgery that gets a whole lot more complicated.

I did not have a temporary ileostomy, and in terms of LARS I tend to be on the constipated end of the spectrum. I lost my sigmoid and half my rectum in the surgery, so keeping as much rectum as I have had undoubtedly helped me have an easier time than many others. I still have to manage my bowels like never before, but I’m not housebound.

It’s a marathon.

Others have discussed the mechanics of radiation, which can vary but should be broadly similar.

I had a full dose (60 Gy) of pelvic radiation (x/gamma), and had absolutely no side effects until a couple of days after the last dose, when I suddenly developed intolerable abdominal pain and uncontrollable diarrhea. Ended up spending a month in the hospital on IV nutrition and painkillers until my intestines calmed down enough that I could eat again. Most people don’t seem to have such strong after-effects, though. (And I later had a couple full rounds of proton radiation on my liver, which were a breeze. So it is really case-by-case.)

Pretty much same as what folks have reported above. First two weeks were a breeze - last week, not so much. I did ask for painkillers and the doc was happy to prescribe. Made a world of difference. Note also there is a prescription med for diarrhea if the OTC stuff is ineffective.
Terri

One thing you could do when you see the radiation oncologist is to ask where, exactly, your rectal tumor and involved lymph nodes are located. Is the tumor on the front (ventral) wall of the rectum or on the rear (dorsal) wall of the rectum? Ask if this would make a difference in the radiation side-effects pattern.

For example, if the tumor is on the lower rear wall of the rectum, next to the spine, you might experience tailbone pain due to the location of the targeted radiation. You can ask if this would be a likely side effect.

I recently finished 28 rounds of radiation and 5 chemo infusions. 15 years after dealing with colorectal cancer I had the luck? to develop esophageal cancer. So the chemo might not be what is used for colon c and the radiation is in a different area, but the experience would be about the same. It wasn't nearly as bad as I expected. They give the chemo in separate bags and it took about 3 hours. The first will be the longest as they start slowly to make sure no reactions. My kids fixed me up with an Ipad loaded with Hulu and Netflix and I passed the time with movies or tv shows. I never had nausea but was fatigued for a long time and lost about half my hair. When my Dad had chemo for cc years ago, he lost all his hair. Also, the radiation may give you a skin rash as has been mentioned. I found cortizone10 worked best for that. You will likely get weekly blood tests and they adjust meds to deal with results of those. IE, my magnesium got quite low, so they added that to IV and it really burned my vein so I begged to take it orally. Not as effective but much easier. Anyway, I wish for you a good result and no side effects!

So I guess I'll add my experiences here in case someone down the road searches.

I went in for consultation at the cancer center which is 45 minutes from my home. I hadn't realized that the treatments were not available at the place right by my home. They offer chemo there but not radiation therapy.

When I got there I spoke to my radiation oncologist about what we were going to do and all the possible side effects. there were some papers to sign. They showed me around the center there. Everyone was super nice. I was surprised to hear that it might take a week or two after my initial scan to come up with my protocol. I told the doctor that I REALLY wanted to get started as soon as possible. There were no appointments available until the day after Christmas which would be a two week wait just for the initial mapping which I found really distressing. Instead they were able to squeeze me in later the same day so I went and got new tires while I waited for my appointment.

I figure I am going to need them with 1.5 hours added onto my daily driving. They told me that my bladder should be full for the mapping and the upcoming treatments so about 45 minutes before my appointment I bought a grande chai latte and drank it. When I came back the radiologist came and got me and showed me their waiting and dressing rooms. I was assigned a cubby and later they put a label on it with my name and my last treatment date (Feb 5th). I was told that in the future I can check in up front then come back and get myself ready without waiting for anyone.

They gave me a hospital gown and I was told to keep it in my cubby and use the same one each time. I tried to get away with wearing it with the tie in the front but that didn't cut it lol. No pants or undies for me, just the long gown tied in the back. He came back for me and took me to the treatment room and showed me the equipment. He explained what was going to happen and how I was to arrange myself. He let me know that once he had me lined up the doctor would come in and that he would be putting a ball bearing (in a glove tip) between my butt cheeks as a landmark for the machine.

I crawled up and lay face down with my belly in a dip and he place a pad thing under my legs for support. I won't lie, while physically pretty comfortable, it's a pretty darned vulnerable feeling position. The doctor came in, and placed the ball bearing, awkward... They did some scanning and some writing on me with a pen then it was tattoo time. He did three spots, one on each side a few inched down from my hip and one right in the middle at the top of my butt crack. I was super flinchy with all the writing, alcohol wiping, and ink dabbing out of anxiety about the needle. It was really no big deal. I found it helpful to imagine that I was doing it myself, like using a needle to dig out a splinter. That was the last step and I was able to climb down and we went into the adjoining room to look at the schedule.

I have to work during this, if I don't want to be homeless, so I asked for the earliest morning appointment available, same time every day. I was really worried that they weren't going to be able to accommodate this and was incredibly relieved to find that I could have the 8:10 am slot. So my first treatment appointment is set for December 26th and my last, if all goes well will be February 5th.

I got dressed, used the bathroom, and one of the nurses took me into a separate room to give me the lady parts talk. We talked about cremes, sitz baths, bidets, and more. I was given a dilator with instructions and told not to worry about it till after my treatments were over. I actually found it pretty amusing.

I feel so much better now that I have been there and have a plan.