The Colon Club

Hi folks,

I'll be meeting w/ the Rad Onc doctor this week. Odds are he'll recommend the tried and true 28 sessions of radiation along with Chemo. I've seen a lot of posts about the post-op chemo experience. However, besides AppleTree's excellent diary, I've not seen a lot of comments about peoples' pre-op experiences.

So, any words of advice and/or encouragement? I'm dreading the problems, especially the sexual side effects, but I'd rather go in w/ full knowledge rather than get an unpleasant surprise later.

Thanks!

Big Jay,

Make sure u get a good rectal surgeon. I feel this is key. Hopefully he can do operation with a scope. My first surgeon was bad and wanted to do wait and see approach. It almost cost me dearly. My second surgeon was great. He did a Lap LAR operation. He did it with scope and I had no issues with the surgery. All surgery have risks (death, sexual problems, etc) but the alternative is far worse. I believe the sexual issue is more when u do the surgery and doctor messes things up than when u are having chemo. Not sure it this is true but thought that is what I read. I am on my 7th round of chemo. Each person is different. But my side effects have been minimal. Hardest part for me is the mental but I pray to God that he takes care of me and take one day at a time. I pray all goes well with surgery and chemo.

Hi folks,

I'll be meeting w/ the Rad Onc doctor this week. Odds are he'll recommend the tried and true 28 sessions of radiation along with Chemo. I've seen a lot of posts about the post-op chemo experience. However, besides AppleTree's excellent diary, I've not seen a lot of comments about peoples' pre-op experiences.

So, any words of advice and/or encouragement? I'm dreading the problems, especially the sexual side effects, but I'd rather go in w/ full knowledge rather than get an unpleasant surprise later.

Thanks!

Hi Big Jay,

Overall my chemorad therapy went relatively easy. I recall a couple of days of minor fatigue about mid way through the 6 weeks. Typical day - I took my 4 horse pills of capecitabine at breakfast then went for radiation treatment. Sessions were super short, and I went straight to work from the DR's office and most people at work probably wouldn't realize what I was going through at that point. Once home for the evening, I had to take the second half of my chemo at dinner.

Nausea wasn't really a problem, but I did have a prescription just in case. The only other thing I noticed just as treatment wrapped was some dark, discolored patches of skin in my groin area. It seemed to get better quickly and didn't bother me really. The one thing that I did experience during this time that did bother me was extreme itchiness in the scrotum. Medicated powders seemed to help and this went away over time.

I was super anxious about taking the chemo at first, but that went away eventually as I got some time under my belt.

Now, being over a year out from radiation, I believe I have noticed some longer term affects. One, I believe my bladder was hit. It seems like I have much less ability to hold it, and urgency to go comes on very quickly. No problems with incontinence but definitely different than before. Second, it seems that orgasms,ejaculation has been impacted. I can still have them, but they are very weak compared to how things used to be. I hope it gets better with time. I've been meaning to post questions around this on the forum at some point. I think both of these issues are attributed to the radiation, but I can't be sure.

Since we are done adding to our family, I have not done any investigation into fertility after undergoing treatment.

Overall, it wasn't as bad going through it as I imagined. I think I am dealing with some side effects though. Hope this helps.

Vod

Just replied to your question regarding the Xeloda under AppleTree's chemoradiation thread. Hope it is of some help for you! As I said in that post, to me the chemoradiation was the "easiest" hurdle of the whole shebang for me--I bounced back so much more quickly than I had anticipated. Not saying it was easy, just that it wasn't as bad as it could have been. For me week four is when it really started to accumulate and get more challenging with frequent trips to the bathroom and inflamed bowels that made eating certain foods not so pleasant. Ask for a sitz bath and a water bottle to clean after bowel movements as toilet paper will feel like sandpaper down there. I used Aquaphor for the skin irritation and it was enough for me--put it on 2-3 times a day (just can't do it within four hours of a radiation treatment). Not sure of what type of underwear you use, but that too can make a difference with comfort as you progress through the treatments--the little things can help you feel a little better so keep that in mind as well. I was able to drive myself to all of the treatments, that was never an issue. Was always a hard sell on my brain to make that turn in to the cancer center, but physically it was not an issue for me.

Good luck with your appointment and I will check back on your thread periodically to see if you have any other questions.

Gday Jay,

Just wanted to give you some positive side of things. I was lucky and only experienced mild fatigue and diarrhea towards the end of each block of radiation.

My treatment was tweaked a bit in that I had a week of FOLFOX then 2.5wks of chemoradiation (Xeloda), then a week off, then the same repeated, a week off, and then a final week of FOLFOX.

Towards the end of each radiation block I was chewing gastrostop/Imodium like they were going out of fashion.

I didn't experience any skin sensitivity etc but was proactive and used a moisturizing shower wash.

In terms of bladder affectation I agree with Vodkanockers in that I can't hold my urine as well as previously and I also have 'dry' orgasms although that's getting better. Doc said it should improve the more I use it (so to speak).

I found it easier to deal with by making an effort to learn as much about it as possible and asking as many questions of the techs as possible so it became less daunting.

The worst part for me was having to have a full bladder during the treatments haha. At the end of each session I couldn't get my pants up quick enough to dash to the loo.

Stick with it and cross each treatment off as you go. Makes it much easier to visualize the end.

All the best mate,

GK

Thanks for the advice everyone. I suspected that, since I didn't see a lot of posts about the neoadjuvant phase (unlike the post-op Chemo), it wasn't that big a deal... relatively speaking... Y'all have confirmed my suspicions.

I've been a bit concerned about how I'll work this into my daily schedule... especially since I need to save my sick time for the surgery... However, it doesn't seem like it will effect things all that much. Luckily (if you can call any of this "lucky") I work for the Johns Hopkins School of Medicine and we're right next to the Hopkins Hospital main campus. The Sidney Kimmel Cancer Center is literally three blocks from my office. So, I can probably do the sessions before or after work or maybe over lunch.

While I'm not looking forward to the next year I have now reached the point where I want to just get it over with. The sooner it gets started the sooner it'll be over.

Big Jay,

In terms of work, I didn't take any time off for the chemoradiation. My treatments were scheduled with before or after work, or during my lunch breaks.

Each treatment takes no more than 10-15mins, and that's if they do scans before the actual treatment. Most of the time is the techs aligning you so they zap the right area (always a good start)!

You'll be right mate, and before you know it, you'll have overcome the first hurdle.

GK

One other item I thought might be worth a mention as a possible positive of the treatment - many of my symptoms that led me to a dx were greatly diminished during the course of chemorad treatment. In the weeks/months leading up to dx, I had way increased BM frequency, tenesmus, pencil-thin stools, etc. After a couple of weeks of sessions this started to improve and was much better by the time treatments ended. It made the time between this treatment and surgery seem a little more like normal and I was happy to be rid of some of the issues.

Anyway, if you have any symptoms like I had, you may enjoy some temporary relief from some/all of them in the time before surgery. Maybe it's a stretch to call it a silver lining, but thought I would mention it.

VodKanockers wrote:One other item I thought might be worth a mention as a possible positive of the treatment - many of my symptoms that led me to a dx were greatly diminished during the course of chemorad treatment. In the weeks/months leading up to dx, I had way increased BM frequency, tenesmus, pencil-thin stools, etc. After a couple of weeks of sessions this started to improve and was much better by the time treatments ended. It made the time between this treatment and surgery seem a little more like normal and I was happy to be rid of some of the issues.

Anyway, if you have any symptoms like I had, you may enjoy some temporary relief from some/all of them in the time before surgery. Maybe it's a stretch to call it a silver lining, but thought I would mention it.

Outside of a little blood in the stool, every once in while, I've never had any symptoms. Heck I outside of the stress, anxiety and mild depression from the cancer DX I feel great.

Has anybody mentioned endorectal brachytherapy to you? They've been doing trials at Hopkins and given what you've written in your sig, you might qualify. I underwent this treatment there myself.

4 treatments and no chemo.

http://www.hopkinsmedicine.org/radiation_oncology/treatments/brachytherapy.html#endorectal

Big Jay wrote:While I'm not looking forward to the next year I have now reached the point where I want to just get it over with. The sooner it gets started the sooner it'll be over.

Yes, once you actually get started with the whole treatment process, that alone will help with some of that internal stress of dealing with having cancer. I could not agree more, I felt the same way, you can't finish until you get started so the sooner you start the sooner you finish!

Big Jay wrote:Outside of a little blood in the stool, every once in while, I've never had any symptoms. Heck I outside of the stress, anxiety and mild depression from the cancer DX I feel great.

I completely understand, I was exactly the same with the lack of any symptoms except for occasional blood in stool, and never large amounts of it either. Unfortunately, you have to put your otherwise good body through the ringer in order to eventually get the cancer out of it. It can be discouraging at times to end up with a body that feels infinitely less healthy after going through all of the treatment stages, know that you are not alone!

Keep on coming back and letting us know how it's going for you!

mgraham wrote:Has anybody mentioned endorectal brachytherapy to you? They've been doing trials at Hopkins and given what you've written in your sig, you might qualify. I underwent this treatment there myself.

4 treatments and no chemo.

http://www.hopkinsmedicine.org/radiation_oncology/treatments/brachytherapy.html#endorectal

My surgeon had mentioned the study and set me up w/ Dr. Herman who's running that trial. Unfortunately, because of the unclear staging, I don't qualify for the study. Annoying but understandable. It definitely looks promising and I think it's a better way to keep the radiation where it belongs. I'm happy to you got in on it, I'd have jumped in too if I could.

There was some discussion about going w/ the European style 5-days worth of high dose radiation w/o chemo followed by surgery a day or two after the last treatment or the USA style 28 cycles of low dose chemorad w/ surgery 6-8wks after. I decided to go w/ the tried and true USA method because it has been shown to have a lower rate of long-term toxicity and, per my surgeon, the 5 day patients are wiped out and seem to have a harder time w/ the surgery and recovery. Also, for my own convenience, the treatment center at JHH is a 5 min walk from my office. So I should be able to do this during my lunch break.

Is your surgeon dr Gearhart?

I'm 44 and about two years out from my surgery. If you need anything, feel free to hit me up.

mgraham wrote:Is your surgeon dr Gearhart?

I'm 44 and about two years out from my surgery. If you need anything, feel free to hit me up.

No, I'm setup w/ Dr Bashar Safar. He seems pretty decent and works with the Robot. Did some back channel research and got word from nurses that work(ed) directly w/ him that he's "excellent". Been pretty happy w/ the "team" so far w/ the exception of my original GI Doc.

My next appointment is w/ the Med Oncologist: Dr. Ilene Browner, and I can't find out much info about her. While I'm sure she's good her areas of interest seem to be Geriatric Oncology and Palliative Care... While I won't claim to be young I'm well away from being Geriatric and, unless they've been lying to me about my stage, I don't even want to consider the Palliative part. The Rad Onc Doc was a bit dismissive about needing the Med Onc at this point because "all they do is write the Xeloda prescription" so I'm not sure if Dr. Browner is my post op Onc. Any suggestions for a Hopkins Onc would be appreciated. I've already heard good things about Dr. Donehower and I'll likely look him up.

Big Jay wrote:My next appointment is w/ the Med Oncologist: Dr. Ilene Browner, and I can't find out much info about her. While I'm sure she's good her areas of interest seem to be Geriatric Oncology and Palliative Care... While I won't claim to be young I'm well away from being Geriatric and, unless they've been lying to me about my stage, I don't even want to consider the Palliative part. The Rad Onc Doc was a bit dismissive about needing the Med Onc at this point because "all they do is write the Xeloda prescription" so I'm not sure if Dr. Browner is my post op Onc. Any suggestions for a Hopkins Onc would be appreciated. I've already heard good things about Dr. Donehower and I'll likely look him up.

I can see where your rad onc is coming from, especially in this phase. You'll mostly be dealing with him/her and his/her team for now I'd think (that's how it was for me, but my rad was different from yours). The gen onc can also prescribe meds to help with any chemo side effects and offer advice/info to help abate your worries.

My oncologist is Dr Nilofer Azad and I really can't say enough good things about her; whip smart, compassionate, precise, and straight-forward. She specializes in colorectal and works out of Hopkins, but she also works out of Sibley in DC so if you do try to see her and can't get in at JH, try Sibley and then you can continue seeing her at JH.

If you need more onc recs, I can probably come up with some. A guy who did brachy at the same time I did saw an onc at a different hospital in the area and my wife has a buddy who knows a lot of oncs.

Something else that helped me a lot was going to a primary care physician that is in the Hopkins network. I was diagnosed only 2 weeks after I moved to MD so I needed a PCP anyhow. It's nice that mine is in the network because she can pull my Mychart stuff up and discuss it with me if needed.

One last thing - If you feel tons of anxiety, tell one of your doctors and they can give you something to help with that. My heart goes out to you man, hang in there.