Chemo Decisions

[Don M]

I read your "book" with interest Carole. Unless there is some sort of miraculous bifurcation for me where I end up NED or stable for a long time, I may be following your path in the not too distant future. I am not going to chemo myself into the ground. I stopped taxotere after 4 rounds when it became apparent that it was causing severe sob and I had to go back on high dose prednisone to recover. Right now I am off treatment, but I did get stable disease with the taxotere. It has been 4 years since I had carboplatin and I have never had taxol. I will try that if I get more progression, but i think that will be my last chemo.

Don m

[CaroleHammett]

Don:

I'm so sorry about this latest turn of events, but can--unfortunately--relate totally.

So far, I'm not displeased with the path I've chosen to follow now that my "viable" chemo options have been exhausted (by my definition, not my oncologist's; i.e., quality of life v. severity of chemo side effects):

Friday night I was able to watch James (my 12-year old grandson) play football for the first time. Saturday night I went to a Colorado Rockies (v. Houston Astros) game in Denver; and tonight I've been invited to a friends' dinner party. I have Monday "off" but on Tuesday I will be watching Amanda (my 16-year old granddaughter) play volleyball. The following night one of my favorite classic pianists, Toby Tenenbaum, is playing his "Sonatas" here in Boulder. This album is incredible in terms of relaxation and sleep--and as you know the Prednione plays hell with both.

I'll try to "behave myself" the rest of the week, but come Saturday, some frends have invited me to go lake sailing with them (and as we all know, that's an offer I can never refuse).

There is not a minute of the times I spend in activities such as the above which I do not savor--as is also the case when I'm reading (or re-reading) a book, watering my plants, listening to old "jukebox" favorites--or going ballistic wihle watching political hyperbole on television (one of my short term goals is to live until the first Tuesday in November ).

In other words, my quality of life is higher than ever before; and, more importantly, I appreciate my life--both past and present--more than ever before.

I highly recommend the path I have chosen, Don, based on the criteria I've chosen, but I also remind you that in your case, because you have adenocarcinoma rather than squamous cell, you have many more Western treatment options than I (after which, you will still have the Oriental and other complementary options at your fingertips as well).

Moreover, I expect there will continue to be more adenocarcinoma solutions every few months from here on out, and that you will hopefully be able to manage to buy quality time from a number of them.

Remember that I waited until I had exhausted almost all other traditional remedies before I "opted out" of traditional treatments (at the end, the most my clinical oncologist could promise was a couple of chemos, each of which only had a 10% chance of working while both held a 90% chance of severe side affects).

I feel like I've turned the balancing of time-buying and quality of life into an "art form" during the past year and a half; but that also means I can totally relate to the difficulty of determining when the scales have tipped.

Two factors that I think are important to any final decision: (1) Your oncologists have the treatment survival statistics at their fingertips, but they won't tell you what they are unless you ask them directly (and even then you sometimes have to be "ultra-assertive" to pry them out of them); and (2) according to SharonJo and a number of studies, taking IV infusions of Vitamin C simultaneous with chemo can greatly reduce the number and degree of side effects (and according to some even stabilize or slow down the cancer growth).

In my case the chemo survival statistics are so low that going forward due to a simultaneous attempt to reduce the side effects with Vitamin C wouldn't make sense. On the other hand, now that I'm not doing chemo at all, I'm planning on trying IV Vitamin C infusions alone (based on the fact that IV Vitamin C treatments may also reduce cancer side effects; increase energy; and perhaps even slow or halt progression); and in the meantime, am also taking "toxic" amounts of oral Vitamin D3 (30K IU daily) as a number of studies show that this treatment, too, may halt or slow progression (As a Stage IVB toxicity is no longer a factor ).

In the meantime, the best of luck to you, Don, and may the wind always be at your back.

Affectionately,

Carole

PS I wonder if these two postings (yours and mine) should be moved to a more appropriate board so as to open discussion to others who are finding themselves facing these same dilemnas? (I will PM KatieB now to ask).