scan at MDA tomorrow... updated

[skypup]

Well... it could have been better, it could have been worse...

Results: most mets are stable; one has grown a small but significant chunk; unfortunately, there is a new one that has grown pretty fast in four months, the most worrisome met I've had and the first new one in quite a while.

Onc talk: he doesn't believe metronomic chemo or ADAPT is going to be of help in a case as advanced as mine. We settled on an Rx for celecoxib (I have sore hips from the radiation) and a ⅔-sized dosage of irinotecan (to hopefully minimize side effects without losing efficacy). We'll scan again in 3 months to see how it goes. He doesn't think 5-FU does much good and so suggested we leave it out since I don't want to carry the bag anymore. I am going to talk to my local onc about taking Xeloda at reduced dosage.

I feel like my days of lengthy chemo breaks are over. Not sure how I feel. Took herbal meds.

Kenny mentioned on another thread that after seeing six oncs that he thinks all oncs are probably all hardwired together. I'm pretty sure I agree. I am grateful for all my docs and I really respect and like my current oncs, but taking chances is not in the oncological black bag. I understand, but am a tad frustrated. Mostly I understand... and will manage to get what I want by a bit of dissembling (if that's what I need to do.)

Thank you, my friends, for your support. Hugs to all!

p.s. the Indian food was fantastic!

[exaussie]

So the battle is a little intense but you haven't lost the war. Take pleasure when you can ie Indian food YUM and you made need more food after herbal meds...lol
Sleep well friend...

[DarknessEmbraced]

I'm sorry to hear that it wasn't better news! I'm glad you enjoyed the Indian food!

[KWT]

sorry you didn't get a little better news, it's no fun finding out we've got a new visitor setting up shop. I hope the new plan keeps you in the race for a long time. two things I've learned lately,one is I'm going to have to redefine the term "good news"or Get used to being disappointed. And a good onc is one that will go along with something YOU want even if they don't agree.

Thank goodness for herbal remedies.

[annalexandria]

I'm glad you had your herbal remedies, skypup, and wish the results had been more positive.
Hugs~AA

[CRguy]

Sounds like a " don't retreat, gather the troops, reload and set a plan " time.
Do what ya' gotta do to keep fightin' the good fight.

Harmony
CR

[Voxx66]

It isn't what I was hoping to hear but it sounds like you are still in the game. I did the full Folfiri dose btw and pretty much wishing I hadn't. Your plan sounds like a good one.

[singingholly]

Is it possible for some of these mets, new or old, to add local procedures to reduce the disease burden? For example, while on chemo sbrt here and rfa there...?
I believe it's always worth it when possible, even if I know not everyone agree on this...
Olivia

[pollo65]

Skypup,
I know we don't always get the results that we want but at this stage of our game I think we pretty much get what we expect. Sorry your scan wasn't clear but mostly stable keeps you in the game. I am doing rso(rick Simpson oil) which is no picnic either but at least I feel like I am doing something of course my onc doesn't approve but I feel like this far out it is my life and I am gonna do what I want. I know you have caught your breath by now and are thinking about your new plan... I kinda think that's pretty much the way it is.
Wishing you nothing but great luck with the new plan.
Pollo 65

[lauragb]

Sending thoughts of a successful new plan. Sorry it wasn't all stable.

Laura

[skypup]

Voxx, I had wondered which direction you had gone with the chemo. Full-strength FOLFIRI sucks, for sure, but I hope it is as effective for you as it has been for me. I've gotten a couple of years of going on and off it for a combined pretty decent QOL.

Pollo, you put it really well. Yea, at this stage of the game we have been run through the mill a few times, know what's coming, and it's about how we play the hand we've been dealt--on our terms, as much as possible.

This morning it has settled in that my years of being able to take breaks are over, that a page has turned and it is a true "chemo-for-life" now. I never thought I'd say that. There was a time when I said I'd never do it. Ha. But I'll try to eek out all the QOL I can, hence my pushing to take smaller doses.

I just look at my nearly blind not-a-pup anymore buddy and hope I live just a day longer than her. That's the master plan.

[bitchslapped]

Skypup, I hope your compromise knocks this new met on its can, & yes, our furry little friends bring so much...they never disappoint.

Best Wishes
Bitchslapped

[Voxx66]

I refused the biologic but looking at the CEA rise I wanted to be aggressive. I am now probably going to have it dialed back.

[orcasres]

Sorry the news was not better, but hopefully the new treatment plans keep that QOL coming. A shout out to your pup from our 13 and 2 year old pups (and the cat since he thinks he's a dog occasionally also). Lois

[Faith42]

Well Skypuppy, it has been a while since I got on here. Everyone in the family had the swine flu. What a season. I go back to MDA in 2 weeks. Already all stressed out, but glad you are getting your answers. Just wanted to tell you since we never got to talk that I am taking vitamin c and alpha Lipoic acid lipospmally. Supposedly, you can get an IV dose so much cheaper. I just tested my CEA so we'll see how that comes out. Not doctor approved, but I am listening to my intuition. Also read, radical remission. That book was uplifting for a change. Message me if you want to know more. Glad you are limiting the chemo so that you can enjoy life! You are always a source of inspiration on here. If you ever find yourself back in SF, they have an awesome new Indian restaurant. Would love to meet up with you. Good luck. Blessings.