New here...where do I begin?

[nkoske]

re: kids...I was diagnosed literally the week my wife and I were going to start to try for kid #2. We banked some sperm. The main reason to bank is just in case the surgery goes all wrong (i.e. cuts a nerve that controls things), chemo (at least Xelox) does not do permanent damage to the male reproductive system. You must also keep in mind that when you come out of the back side of this the recommendations are to wait 1 year before trying to conceive the ole fashion way.

[seasnail]

Thank you everyone for advice, input, and thoughts.

We did banking last week with literally 24 hours notice and the facility was great with fitting us in, a day before he had a PET scan (they were worried about that radiation) and 6 days before his first day of chemo (which was yesterday).

Apparently our plan is to do 4 treatments of Folfiri/Avastin and maybe something else that I can't remember (the nurses use multiple names for different drugs and I am getting all confused) over the next 2 months and go from there. Does that seem short to anyone else?

We were at the infusion center for 4 hours and then he has 46 hours of a home pump. We get that removed tomorrow. So far so good though - no side effects as of yet (knock on wood) besides his temp raising to 99 degrees for about an hour or two before dropping back down to 98 on the nose. We realize it'll probably come later but so far he's feeling positive - great appetite, great sleeping, and lots of energy. He just hates carrying that bag, haha!

[Ajane]

Dear Sea Snail, I'm so sorry you find yourself here, but glad you found this site as I did. There's a wealth of knowledge and such wonderful support to draw from here, especially in those early days when you can feel so alone. I was diagnosed in mid-July as late stage 1, very low rectal, grade 3. I'm finishing up my third week of six chemo-radiation this week. My butt is finally getting to the point where I can sit again for a little while. It's crazy as I can still remember being symptom free as late as mid-April (except for seeing a spot of blood in a stool). I still don't think I'm completely over the shock of it all. I want you to know I will be praying for your beloved and you. So glad treatment has started and things are going well. God Bless.

[justin case]

It's great he has energy, and is eating, drinking, and resting well. Getting plenty of fluid is a must. The pump is a hassle but 1 down, 3 to go!!!
Regards,
Michael

[seasnail]

Thank you for your kind words, Ajane. We feel the same. Some days it just sneaks up on me/us, like when I wake up everything is like it was and then it hits me that oh, that's right, everything is different. No symptoms for pretty much ever and bam, suddenly stage 4 cancer??? Quite literally, out of nowhere. Talk about a curve ball.

And thanks, Michael! We are 25% done with the first batch of treatments, as I told him today, haha! Kind of crazy.

He's working through some constipation right now but this has been an ongoing problem the past week or two so we aren't sure if it's just more of the same, or if it's because of the Avastin (or whatever the drug was that causes constipation). Still, lots of energy today even after the pump was removed and appetite still fine. No nausea, which we were worried about. He does drink alkaline water...not sure if that will actually help or not but we figure what the heck. Hope tomorrow continues to be more of the same.

[O Stoma Mia]

... We are 25% done with the first batch of treatments...

Hi seasnail - It's good to see that your husband is making such progress. Do you have information on what is planned next after the 4 cycles of FOLFIRI+Avastin have been completed? What kind of assessment and treatment program is envisaged? Is any surgery contemplated?

[seasnail]

... We are 25% done with the first batch of treatments...

Hi seasnail - It's good to see that your husband is making such progress. Do you have information on what is planned next after the 4 cycles of FOLFIRI+Avastin have been completed? What kind of assessment and treatment program is envisaged? Is any surgery contemplated?

You know, I don't know the specifics. When they explained our plan, it was so early on that I think shock was still overtaking all other emotions.

What I do remember is that after the 4 rounds they will assess. If the tumor in the rectum and liver mets shrink or show improvement, I think we move to radiation and then surgery. If not, they want to try 2 more rounds of the same, or perhaps choose a new cocktail. I know our onc definitely explained the trifecta of chemo/radiation/surgery will be our best bet.

I can ask next time we meet and post back. I know all the various bits of info I've gathered here has been instrumental so want to contribute as much as possible!!

And as an aside, everything is still good with him. We're actually vacationing in Vegas (literally flew out 12 hours after his bag was taken away) and have another trip by plane next week. He's feeling great. Been doing baking soda/water rinses in his mouth to prevent sores, sleeping well, and actually going to the bathroom regularly with normal bm's, which is nice!

[seasnail]

Just wanted to update. He is now unplugged from week 2 of chemo. Feeling great. Still no side effects (not one!) but I heard that isn't too unusual after the first few treatments. I guess we'll see after the third/fourth one. All vitals looked good except white blood cell count was a bit low so they gave him some shot today to boost it from the bone marrow (can't remember the name). No aches from it yet (knock on wood).

One thing that is encouraging is he is totally regular with his bm's. Prior to diagnosis and even as recent as a few weeks ago, he still was somewhat inconsistent. Either constipated or having diarrhea and trying to figure out a prescription combo that balanced the two. It usually went too far one way or another. Also used to have lots of that mucus stuff coming out without warning, which was really tough cause he didn't want to leave the house for fear he wouldn't find a bathroom in time. Today for the first time in months (hopefully not TMI) he had normal poops - we were so excited and had a big celebration. Funny in hindsight how different our lives have become.

The doc initially said he was having diarrhea and mucus because the tumor was large and in the way and his body was trying to expel waste by squeezing it past the tumor. We are hoping (based on nothing more than just that...hope) that the tumor might be shrinking and his body is working less to have to move around it, thus creating normal bm's. If nothing else we just feel encouraged that he is feeling better/normal and hope this continues. It's crazy because I am also already having scanziety and still have at least 2 more chemo rounds to go before we have it lol.

[herenow]

Father's in late 70s and recently diagnosed with colon cancer. Surgery is in a week to remove several inches of colon. Wondering what's recovery like for a fairly healthy guy. A family member mentioned...he'll be in nursing home?

[horizon]

I could relate to a lot of what you wrote about your husband. I think you made the right call going to a specialist. This is a great place for support from people who know what it's like to be going through what you are. That's amazing he didn't have any symptoms the first two chemo sessions. Hopefully he'll have smooth sailing the whole treatment schedule!

[SFLwife]

Herenow
If he is a pretty healthy guy, why do you think he would be in a nursing home? Does he have anyone to be there for him at home?

[herenow]

Well these were the words my step-mom used about the nursing home. This is all new to me. My thoughts are what you said exactly. I guess it's a wait-and-see thing?

I see you have a little experience with all this cancer. I'm sorry...how awful. But yeah. I'm new here. Hoping to learn a bit as I go.

[seasnail]

Another update...with questions.

We are 3 weeks out from our last (fourth) chemo session (at least for now). All is good. Bowel movements are still normal, minus a few gassy days here and there. Still never had any side effects, which was most surprising. Makes me wonder why they don't keep going if things are moving in the right direction. I know the dh doesn't want to hear this, haha, but why stop at 4? What if 6 or 8 would shrink it more? Tumor markers are consistently going down, so that is also a relief, but again, makes me wonder why stop? Is it just simply "enough"?

So today we met with the radiation oncologist and got fitted for molds and a 'teaching session' with a RN. He'll begin 5 weeks of daily radiation on the primary in about a week. They said they have to wait a few months before they scan after that since radiation can keep working for a while after it's done, so think it'll be around Feb. before we know if it was successful and to what extent. They also said we want maximum shrinkage, but there's up to a 25% chance that this could totally kill the tumor and it wouldn't need to be surgically removed. Is recurrence more or less common than if he had surgery? Should that even be a worry?

We also have a pet scan tomorrow and a meeting with our oncologist on Wednesday to go over results and talk about the maintenance chemo plan (which he'll be doing orally for the next 2-3 years). For the scan, they wanted to do a catheter (but didn't do it the first time) - anybody have experience with this? He's freaked out and they said it was our choice in the end whether to do it or not. I know he wants the best results possible, but seems to be on the fence. Thoughts?

Anyway, following radiation, we also will be meeting with surgeons in the coming weeks/months to discuss removing the tumors sometime early next year if all continues on as planned.

[justin case]

Perhaps he will still get chemo with radiation, I know I did.
Regards,
Michael

[seasnail]

We definitely got more answers today.

He will be doing the ADAPT chemo trial with his radiation and then likely as maintenance (though will know more about this tomorrow). This will begin next week, pending the results of today's PET/CT scans. We could have another 1-2 chemo sessions first if they think we haven't gotten the maximum response yet and can get more out of the treatment.