Just diagnosed - So Many Questions!

[Stardust]

AAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

oOOOkay. So. I had been being an idiot and ignoring the blood in my stool and the changes in bowel habits for quite literally 5 months. So on 6/8 I *finally* get a colonoscopy - and the find a big-ass tumor (which is also a big ass-tumor) in my rectum, blocking it so they can't even get the scope past it. CT scan 2 days later reveals metastatis to my lung and possibly liver (they're not sure about that yet). So within a week I went from "I probably have Ulcerative Colitis, that's gonna be a pain to live with" to "HOLY FRIJOLES, STAGE IV WHAAAAAAAAAAT????"

And I'm actually dealing with it fairly well, but it's the not-knowing-what's-coming that's freaking me out most right now.

Since the dx, they've started targeted radiation to try to shrink the main tumor as it was really, really close to blocking my colon completely and rendering me Unable To Poo. I've had 5 of 10 treatments, and it's going alright so far - they've got me on a liquid diet during the radiation, which is vexing, but has kept the runs to a minimum. Today was my lung biopsy; I get my chemo (port? Stent? Implant-y thing) a week from today, and on 7/8, 1 month exactly since my first dx, I'll start chemo - IV Avastin (though not for the first time, since I'll still be healing from the implant) and Oxaliplatin, plus oral 5-FU.

Does anyone ever just wanna say "Ay! 5-FU too, buddy! And your mom!"? But I digress.

As I said, I've got a million questions, but here's the first few:

1) Chemo is happening every 3 weeks. The doctor gave me the option of taking the 5-FU as two-pills-daily or as a pump - I tentatively opted for the pills, but would love to know the actual repercussions of both choices. (Yeah, the doctor explained it a little, but he's not got the it's-happening-to-my-body experience that y'all have got.)

2) How long am I realistically going to be able to work? My boss is being pretty accommodating so far but I don't know how long that can last, and the employer doesn't offer work-from-home. I am the sole support of my family, so this is really important to keep going as long as I can. What can I do to minimize my away-from-work time?

3) The doctors have been emphasizing that they are looking to slow the progression of the disease as much as possible, but aren't really trying to cure it. Does that match with what your doctors say about Stage IV? Should I push them to be more aggressive? I mean, I want to live as long as possible, duh, but my attitude at this point is that I've probably got maybe 5-8 years left, maximum, and so I'm trying to make the best of it. How possible, really, is a return to NED?

I think that's it right now. I've been browsing around this forum and y'all seem cool - I'll try to post a bit and actually join the comunidad.

XO,

Stardust

[cathy123]

So sorry you are going thru this. Sounds like you are handling things as well as can be expected.

I am on the same chemo as you mention except without avastin. Someone else will have to chime in about the impact of the avastin, but with the pills and Oxi alone I would be fine to work except for the day of and maybe two days after infusion. I have not had naseau but am just really tired those days. Everyone is different, and because of issues with my bloodwork I have only had two full treatments so you will have to see.

Best of luck to you.

[sjring]

Stardust, Sorry that you have to join us here, but there are a lot of great people here who understand what you are going through.

Everyone reacts differently to the chemo drugs, so while we can share our experiences, your mileage may vary, as they say. I get the infused 5-FU as I don't have enough intestine from an unrelated surgery to absorb the oral drugs. The infusion of 5-FU is over a 46-hour period and with my center, I get connected to a portable pump at the hospital then 2 days later a home infusion nurse comes to my house to do the take down. The oxili is the real nasty beast with the cold insensitivity and neuropathy. I understand the side effects from the oral 5-FU are a bit more intense than the infused, but that's only what I've gathered from reading other people's experiences and discussions with my onc.

For my part, I'm still working, I take off the 3 days of infusion and 2-3 days of recovery time (which usually includes the weekend) and I'm back at work. I usually take it easy the first couple of days back but my job is pretty sedentary anyway. Usually the first day or 2 after the protable pump is disconnected is the worst for me fatigue wise.

If you have disability insurance coverage (may be part of your benefits package through work) get the claim started ASAP. In my case, Disability covers the days of treatment and recovery as well as any time I need to take off for random doctor appointments and scans. While it doesn't completely replace the salary I'm missing, it does recover a good chunk of it.

[Val*pal]

I just want to welcome you to the Colon Club. Unfortunately, I can't give you a lot of advice, but I will say that you need to feel that your docs are doing everything they can (aggressively), and if you don't get that vibe, find other docs.

[Swimmer22]

I was in the same situation as you--- in December 2010. I first had surgery to remove the lung met (VATS) then 6 treatments of Folflox, then 28 days chemo/radiation to shrink the rectal tumor. LAR surgery with an ostomy-- followed by 12 treatments of Folfiri. My LAR surgery was in September 2011-- results have been no evidence of disease since surgery. I think the key is SURGERY to remove all possible signs of cancer. May be worth checking to see if they can remove the lung mets.

[KWT]

Go for the pills, I've done both. While the pump isn't horrible it's just there. I'm going back to xeloda next round.

Ask questions here and get educated toure your best advocate. Most oncs will just want to put you in chemo wasteland and not even mention anything else unless pushed.

[BrianMc7]

You'll probably down the line have a resection to get rid of the tumor. I had mine before starting chemo, but others get it after shrinking the tumor with chemo/radiation. Don't know the pros/cons of which is best.

You'll definitely need disability (if you have it through your employer) for the surgery. At the beginning, you'll probably be alright with just missing work on the infusion day, but the chemo effects tend to be cumulative, so down the line you'll need more days off. For me, each individual treatment brought on different set of side effects. Chemo is very patient dependent, so your mileage will vary from others.

Also, you have the Family Medical Leave Act (FMLA) to protect you from losing your job due to illness (among other things), I think it's 60 days per rolling calendar year.

Do some searching around for prior posts concerning FMLA, short/long term disability, social security disability, etc.

Brian

[Nik Colon]

When you say recovery from implant do u mean just the port? Or recovery from biopsy? No recovery time is needed for just the port. I started chemo the day after they put the port in. Are they going to do a pet scan also. You mentioned lungs but unsure of liver. Possible cure i believe would be if surgery could be done I assume in the future depending on spread and shrinkage. I would say don't think too much about the what's until you have all the facts. I have not done Xeloda yet but the pump is no big deal imo since it's only 2 days. I am sorry you are going through this. I would try to get your chemo on Friday so you have the weekend for recovery also as the first couple days are the worst. Of course everyones side effects are different but the tingles and such from oxi are very common on oxi. Best wishes