How much is "a few more weeks" worth to you?

LaundryQueen

lindaprocopio said:

This subject is almost "too close to home for me to reply.
In April my CA125 leaped from a scary 2600 to an incredible 8500, and I'd just learned that the Avastin/Cytoxin I'd been on had allowed disease progression, ...just as doxil, carboplatin, and taxol had allowed disease progression in the months of treatment before that. I've been in treatment since September 2008, and have been on various chemo combos, NON-STOP, since November 2009. I was at my chemo-oncologists for a "what should we do now?" discussion.

So this discussion was not in abstract for me, but my reality. Do I keep on trying other chemo drugs? Or do I do something radically different? Or do I allow myself to enjoy spring and summer OUT of treatment, and be grateful for whatever time I have left still feeling good? The chemo drugs still on the table for me are gemzar and topotekan. When my oncologist asked me what I wanted to do, I said "I just want to have a nice spring & summer and am not willing to take anything that will make me feel sick." (& why should I when no chemo drugs seem to work on my cancer??? I'd take ANYTHING that works!! But when you try chemo after chemo, and have disease progression while in treatment every time, you begin to wonder why you are continuing to take the drugs. And, honestly, I think gemzar or topotekan will knock my platelets down after 1 infusion to a level where I can't continue on.

So, I chose to take the radial experimental choice of radioembolization, although I know my oncologist was uncomfortable with my choice. And so I've had the 'mapping' and the 1st half of my liver 'radioembolized' so far, which stole from me a total of only 5 days of feeling lousy. And I've been spared MONTHS without additional 'doctoring', MONTHS of feeling like my old self, healthy and strong, because of my decision. I haven't been to the chemo center for 3 months; you can't imagine how FREE I feel!

I know I've rolled the dice here, big gamble. Because of the associated radioactivity, all scans are unreliable for 4 or 5 months, frankly longer than anyone expects me to live I think.) So we are in the dark as to what is going on inside me. And that itself is strangely liberating! I feel symptom-free, and NORMAL, and am enjoying my spring/summer break tremendously! I don't think I could have simply done nothing, but I am content with what I have done, whether it works or not. I needed this spring and summer off chemo, and if I die in the fall, so be it.

Would I take taxol to buy me a couple more weeks? Probably, but I think it's already been determined that taxol doesn't work for me and they wouldn't recommend it anyway. But in late August, if I'm still here, and we do a PET scan (ignoring the liver area where the radioactivity won't allow a reliable scan reading) and my malignant lymph nodes have been uo to no good during this break, I may just try Gemzar or Topotekan, or both. But I don't think any of us can truly know until we get there what we will do. I'm a fighter; it'd be hard to stop fighting. But these months of 'peaceful truce' during the long war make me wonder.

PS: I've been taking tamoxifen/megace in pill form for the last 10 weeks, in the long-shot (28% statisically) hope that this will hold my cancer mets outside of the liver stable for the months it takes to complete the complete radioembolization cycle. So again, you can see that I need to be doing SOMETHING. But this anti-estrogen/anti progesterone pill combo has zero side affects for me so doesn't affect my quality of life.

Healing vs fighting
Linda: it's possible you will be able to do a lot of healing this summer. One of the doctors in the Defeat Cancer book commented that "fighting cancer" puts a person into sympathetic dominance whereas it is more conducive to healing to be in parasympathetic dominance. May your summer be as calm & peaceful as possible.

(((hugs)))

LQ

kikz

LaundryQueen said:

Healing vs fighting
Linda: it's possible you will be able to do a lot of healing this summer. One of the doctors in the Defeat Cancer book commented that "fighting cancer" puts a person into sympathetic dominance whereas it is more conducive to healing to be in parasympathetic dominance. May your summer be as calm & peaceful as possible.

(((hugs)))

LQ

Linda I hope you have
the most wonderful summer and many more after that.

Karen

carolenk

kikz said:

Linda I hope you have
the most wonderful summer and many more after that.

Karen

Radioembolism & CA-125
Dear Linda

I wouldn't be surprised if your CA-125 went up more as a result of tumor die off.

So glad to hear you are feeling well.

Carolen