Just Diagnosed

[Green Tea]

Hello All,

Just an update. I am starting everything tomorrow. Xeloda 1750mg in the morning and 1750mg night, and radiation. A little nervous with from reading and hearing about some of the side affects, but hoping I don't have to many or any at all.

Wish me luck!!

Rikimaroo

Good luck on your chemo/radiation treatments. Remember that some of the effects of both chemo and radiation can be cumulative, so you might find that the first few sessions are tolerable but that things might get worse over time. So, don't let your guard down, because it is important to keep on top of things and to seek treatment if any unusual side effects start to emerge.

Keep us updated on your progress. If anything unusual happens, let us know right away, because there may be someone here who has had the same experience before and could provide some perspective.

I had chemo/radiation but my situation was different from yours. My chemo/radiation came after my emergency surgery, so I no longer had a tumor, but had a stoma bag to deal with. Your situation is different. In your case they are radiating the actual tumor which is still in your body. In my case they were radiating the pelvic area where the tumor used to be in order to "mop up" any stray tumor cells that might still be around.

Your regimen is called "neo-adjuvant chemo/radiation" . My regimen was called "adjuvant chemo/radiation ". The experiences for the two types of regimen can be very different, so if you are reading experience reports of people here, it is important to note the difference.

PS. Try to get the name and model of the machine they are using, because this can provide some additional information on how your 5-week regimen will unfold.

[daisydaisy]

Hello, Rikimaroo! Hope your treatment is going well. I accidentally came across your post and wanted to tell you that your surgeon Steven Wexner is one of the best colorectal surgeons in the world. I am in Russia, and I heard a lot about him in local medical community. You are lucky to have access to such level of professionalism. Best of luck to you!

[chrisca]

Welcome, some thoughts:

Your tumor location will spare much of the rectum allowing you reasonably normal function after treatment. If you're male, get your baseline testosterone checked before radiation. If you plan to have more children, ask for gonadal shielding. Radiation can zap the testes and affect testosterone later, but doctors seldom measure it beforehand. Then later, if you're on the low end of the normal range or just below it when you were at the high to middle end before treatment, the docs won't supplement because they didn't know your level before treatment.

Discuss LAR syndrome prevention with your surgeon well before the operation. Your surgeon should know to do a "low tie" on the inferior mesenteric artery to protect nerve function related to bowel elimination. If they don't or disagree, get another opinion. The latest literature shows there is no reason to do the "high tie" any more, which is much more likely to cause LAR syndrome.

If you have a complete response to chemoradiation, consider the Habr-Gama watchful waiting protocol. There are risks, but they can be managed. With lymph node involvement this may not be an option though. This protocol offers the best chance at a fully normal life, especially for younger active patients.

[Rikimaroo]

I just wanted to give everyone a quick update.

Day 11, my treatment is about 3 hours from now. I started to get major butt burn and having an external hemorrhoid pop-up when usually it is not out makes it worse!!

Xeloda pills seems to not been bad, no issues so far with that, other then being tired, although I don't know if radiation or xeloda is causing the butt burn, but I am assuming its the radiation from what I read. So far trying to keep on trucking. I have no bleed anymore since I started and maybe 6th or 7th day in, I have not seen blood in my stool anymore.

Any suggestions for the butt burn when you have a hemorrhoid? I use Aloe Vera wipes, and usually pat or try to avoid rubbing the hemorrhoid, which is right next to the anus. Doc said he is going to give me some meds for the issue and help me out. Great Doc!!

Rikimaroo

[Soccermom2boys]

Hi Rikimaroo--

Glad to hear you are trucking along with the chemo radiation treatments. Just wanted to pass along a potential soothing aide--I found sitz baths to be very helpful as I was getting further in to my radiation treatments. I did not have a painful hemorrhoid to deal with so I don't have any specific remedy for that, but I did find the sitz bath to help (you can ask radiology office for one). I also stopped wiping bowel movements with toilet paper--I asked if they could give me a peri rinse bottle and I would use that to squirt the area clean and then just gently dab with toilet paper to clean up. Not sure if you're there yet, but it got to where toilet paper, regardless of what amazing brand it was, felt like sandpaper down there. I also used Aquaphore several times a day over that whole area and it worked well.

Keep on keeping on, always good to get a progress update to know you're hanging in there! Good luck with the second half of the treatments.

[Jackar0e]

Hi I will send prayers still new to the CA world myself 44 with stage vi mets to liver... same symptoms .. blood in stool .. thought I would get a hemroid instead a huge amount of testing and world wind of emotions. I almost feel this is more mental in a way ... like it brings on so many questions and emotions . That's all we have control over. The rest is in the hands of the Dr.

Stay positive .. easier said then done

[[Ana & Alex]]

Dear Rikimaroo,

I had posted you an answer to your post, but I guess it went puff along with other of my messages when the server of the forum went offline.

I will try to replicate and update my feelings at the time, because I can identify pretty much with almost everything you said and because I wanted to know how you are feeling and dealing with the "situation" at the moment

I am too struggling with what I think it is a very similar diagnosis and therapeutic approach as yours. In fact, I think we started Radiochemotherapie at the exact same day what are the odds? If so, you should have your last session on Monday as well?

I can honestly say (and I will stress that I had a vaginal birth which lasted 19 hours last year) that I never experienced anything so painfull in my life, as the flare up of hemorrhoids mixed with diarrhoea mixed with the wounds on my anus and vagina that I am experiencing right now.

I would gladly accept a Stoma right now, if that wouldn't compromise the success of the therapie. In fact, weren't for that (and for my daughter and husband, for who I will always go the extra extra extra mile) I think I would like to leave out the last few days of Radiotherapie and get on with "it" (Surgery). But now, so close to the End, I will endure.

There aren't a lot of things that are able to make the situation better.. but this is what I did/do:

Rinse with cold water and baby pads during and after BM. Sometimes I would use some babywipes with aloe vera.
Don't rub the skin, try to pad it softly instead.

Bepantene and Lidocaine Cream always after BM.. Lots of it!

For the Ladys: Cream with Estrogen twice a day. At night a tampon with bepanthene.

I've been taking Paracetamol and Metamizol Mg every 8 hours to deal with the pain. Sometimes I cannot stand after a BM and a warm bottle ay my belly as helped to easy the cramping.

My Radiology Nurse has told me that it can take until 3 weeks for everything to get back to normal, but she thinks that a week after ending the treatment I should feel way better. And so I hope.

But you know, I'm really trying to say positive here and do everything I can - but sometimes, when I think that after all this suffering (we are only at the beginning! Ahahaha) that no one can give us a guarantee that we will get better aka be "cured" I feel like.... I feel like... oh God. I don't even find the words at the moment.

You are not alone. We will get through this and we will do everything in our power for this to get better and get resolved.

Stay strong!

Best regards from Austria,

Ana

[Rikimaroo]

Just wanted to give everyone an update. My last treatment was on Thursday last week, 3/9/2017. Hallelujah. The butt burn is still there of course, and is kind of worse today, had to take a Hydrocodone I barely take them, but when I feel to much lingering pain I do.

I am looking forward to the road to healing. I have a MRI scheduled 6 weeks from now to see how things went, and then see the next steps.

The butt burn and stinging pain is just atrocious. I hate it. I use aquafor only now. But shocks, spikes and stings int he anal sphincter when it contracts sucks, and makes it hard to sleep.

[ANDRETEXAS]

Congratulations on finishing....keep on the straight and narrow......and good luck with your MRI. One day a a time !