Where I am now

[MikeManess]

It's been quite a road over the past year and a half. Stage 4 cancer w/two spot in the liver. Colon resection, FOLFOX for two rounds, added Avastin for rounds 3 and above. After 10 rounds of Folfox, we had to drop Oxaliplatin because of neuropathy. Two rounds of Folfox w/o Oxaliplatin, then two rounds of FOLFIRI + Avastin, stop chemo for a month, then liver surgery. Resumed Folfiri + Avastin for 12 rounds. Then no more chemo!

I felt a little apprehensive once chemo stopped because while I was on chemo I felt protected from cancer. But I've had two scans and a colonoscopy that are all clear. My CEA level is slightly elevated (7.6), but so far nothing is showing up anywhere.

Neuropathy (numbness) in hands and feet are still significant, but slowly getting better. I've noticed it gets a little worse if I take some medications, but it'll recover once I quit the medications (Ibuprofen, for instance).

Arthritis is starting to hit HARD. Knees, ankles, and hip mainly, but walking is - at times - difficult, My oncologist swears that the chemo did not cause the arthritis, but he previously told me that Avastin could cause it. So I don't know if it's chemo related or not.

Diarrhea is much better. More LBMs than anything, but it's starting to become more firm. Gaining weight back, too - I can wear my wedding band again!

Blood pressure is through the roof, but being treated. Yet another chemo side-effect no one tells about. Comes from chemo hardening the blood vessels.

However, I'm alive and I'm free of chemo! To treat myself for getting this far, I purchased a new quad cab truck (Ram 1500 Lonestar, for those that are curious). Most expensive vehicle I've ever had, but I love my truck. Even has a heated steering wheel! Wow! Got it on a 6 year note, and my goal is to pay it off.

Next scans are November 1, with Dr. appt Nov 20 to discuss scans. In between those dates, I'm going to Philippines to take my wife home for a visit with her family and friends. And when we return, if scans are still clear, I'll have the port removed so I won't have to keep going in every 6 weeks for a flush & oil change.

According to Dr. Internet, the average lifespan of stage 4 cancer patients after diagnosis is 2 years. If I make it until March still NED, I'll have beaten that average.

To those just starting out on chemo, it's really no big deal. You learn how to handle the side-effects. The pump is no big deal .. two nights of the pump sounds and you're good for another two weeks. I actually enjoyed my chemo days. I'd go in, sit in the chair, get a heated blanket, and sleep for 4 hours. Good naps! At UT Southwestern we get private chemo rooms.

I was give a button helper by my 85 year old mother - it's a miracle that lets me button my own shirts even with the neuropathy I have. Go to Amazon and search for button helper. You'll find dozens!

The chemo nurses all know my name, and the parking lot valets know me.

So hang in there .. the chemo will end one day, and you'll find ways to deal with the chemo side-effects in the meantime. And by all means, if you have the choice, get a port installed!

Mike Maness
Forney, Texas

[bitchslapped]

Congratulations on your NED status; hope you enjoy the new truck!
You might be interested in the following thread regarding help w/neuropathy:
viewtopic.php?f=1&t=56876&hilit=neuropathy+cream


Best Wishes
BS

[DarknessEmbraced]

Congratulations on being NED!*hugs* I hope your Nov scans go well! Enjoy your truck and your trip!*hugs*

[SweetC80]

Congratulations!! Have a wonderful trip and best of luck and many healthy thoughts for continued clear scans!

[susie0915]

Congrats. Have a great trip. And enjoy your new ride.

[mozart13]

Thats great Mike,
I like your attitude, positive all the way.
Enoy your new ride!

[Basil]

Congrats!

Weird thing for me. I was being treated for high blood pressure before cancer. After LAR, I've been off bp meds and my numbers have been normal. No idea where that came from.

[benben]

Way to go Buddy!

Cancer Warrior!

[WriterGirl1969]

Hey there, Mike Maness.

If memory serves, you and I were diagnosed, joined this group, and had our surgery pretty close together. I remember reading your posts and being just a couple weeks behind you in my journey. Glad to hear you're NED. Glad to say I am too. I decided to chime in after reading so many things on your post that I could nod along to. Like you, when I stopped taking chemo, I was surprised at how nervous it made me to not be actively fighting anymore. It's like the whole time I was on it I wanted nothing more than to stop, and the moment I stopped I realized how scary it was to stop.

Like you, I've had a lot more arthritis since chemo. I didn't really connect the two until you mentioned it, but since I'm only 48 years old I can say it's kind of early for me to have it. Makes you wonder.

Like you, my blood pressure has increased since chemo. I feel as if chemo aged me about 15 years. I'll still take it if I can stay NED, but man... rough.

I didn't buy a truck, but I did adopt a post-chemo kitty. Truck is probably less work. That's awesome that you're going to the Philippines. Rock-n-roll, dude. I try to explain to people (like my Mom) that it's like I'm trying to squeeze as much life into every day as I can, just in case, but I don't think she can really get it. You know? I'm sure you do.

Good luck with those upcoming scans. Beat those odds, dude. Hopefully we can post again a year from now that we're both still NED and going strong. Then again in five years, ten, twenty... well you get the idea. Enjoy your trip, and keep living life to the fullest.

Hugs and prayers,
Tracy (aka WriterGirl)

[AppleTree]

What a great update! Enjoy your new truck and vacation to a tropical climate! I just finished my 3rd Folfox and I have to say, the chilly morning air on my face is certainly more noticeable! My doc says after chemo there will still be scheduled scans so I am sure they are still going to be keeping good tabs on you!
Cheers!

[NHMike]

That's some nice progress in what must have been a very rough year. Glad you're a survivor!