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

Hissy_Fitz

If you read Sarah Feather's blog (the Carcinista), you will recall that when her doctors had "the talk" with her, they said Taxol might buy her "a few more weeks." Sarah had vowed, after losing her hair three times, that she would not "go out" bald. Thus, she declined the Taxol.

What would you have said? Would you have traded "a few more weeks" of life for hair, assuming you had hair at the time?

Or would you consider it pointless, and not worth knowing that your family would be burying a bald mom/wife/sister/daughter?

Me? I would opt for the Taxol, put on my favorite wig (glue it down, in fact), and tell my family, "Don't let anyone take it off until they get me to the funeral home."

I'm just not that attached to my hair. My doctor told me that many women decline the year of Taxol maintenance because they can't abide the thought of another 18 months or so without hair. I couldn't sign up fast enough for the maintenance. If they had told me the hair loss would be permanent, I would still have signed up.

Am I marching to a different drummer here? I always thought I was one of those girlie girls. Heck, I don't even bring in the mail without makeup. But dead is dead, and hair is..........just hair. And fake hair is not all that bad. To me, at least.

Carlene

kikz

I totally agree with you, Carlene,
losing my hair was the very least of it. When my surgeon told me on our first visit that I would be losing my hair, I said I don't care if I'm bald the rest of my life as long as I can live. Of course at that time I had no idea how I would really feel when the time came. I did shed a few tears when it started coming out alot but once I made the decision to shave it off I was fine. I wore my shiny bald head proudly and loved the no muss no fuss when I went out. Of course no everyone feels this way. We all have different feelings and that is what makes this dizzy world go around.

Karen

leesag

"Hair today, gone tomorrow"
Hey, you're preaching to the choir when your talking to me. I'm having radiation and Ken just shaved my head so when my hair started falling out it wouldn't be in clumps. Worst case scenario with radiation is that it doesn't grow back! Personally, I'd rather be alive and bald! (Although, please don't think I'm tempting fate, I still would love to have a full and thick head of hair when I get through this stretch!)

As for fake hair, I don't even go for that...I'm all about au natural in my home and scarves when I go out!

Hugs!

Leesa

Mwee

Alive and bald!
HA... I love your idea of putting your wig on with glue ! I can think of lots of fun things to do in a wig.
((((HUGS)))) Maria

Hissy_Fitz

Mwee said:

Alive and bald!
HA... I love your idea of putting your wig on with glue ! I can think of lots of fun things to do in a wig.
((((HUGS)))) Maria

Maria....
I actually got the
Maria....

I actually got the "tip" from the guy who sold me my first wig. He has a customer with Trichotillomania - a young single woman. She is his best customer (actually, her parents foot the bills for her "alternative hair"). She gets a new $300 wig every month or two. Because she sleeps in them on weekends. Why weekends? That's when the boyfriend stays over. I asked how she managed to keep her "secret" in place during....well, sleep and other stuff, while they are in bed. He said she glues her wig on. The glue comes in a roll-on bottle and is water soluble. I didn't buy any, but I'm glad to know where to get it, just in case.

Carlene

kellyh33

Not sure
Since I am not the one with cancer I can't say what I would do. However, as odd as it sounds it really bothered me to think of my Mom passing without it. I am so glad she has hair now. Maybe it's because she doesn't look as sick and she looks more like herself.

My sister had a friend who had breast cancer and opted for no treatment or surgery because she did not want to lose her breast. When the cancer was discovered it was early but since she opted to do nothing she passed away three years later. Now that makes zero sense to me.

I wonder if they turn down the taxol because they don't like the way it makes them feel and they want to feel well their last few weeks on earth?
Now all that being said I would certainly rather have Mom bald and beautiful then hairy and dead.

Tethys41

Feeling sick
If I knew for sure that the Taxol would add only a few more weeks, I'd opt out, not because of the hair loss, but because Taxol makes me feel really lousy. I would spend the time instead, trying anything and everything else that has a record of fighting cancer. Yes, I might even try eating the infamous asparagus.

pjdreams

Who cares about hair
after enjoying a 10 month remission, my doctor told me in March 2011 that most women with my history live just 12 months. I'm platinum resistant so I'll take anything right now that wil extend my life. fortunately my quality of life right inow is good so hair is the least of my concerns. I'm on Avastin/cytoxan to hopefully shrink my tumors and prove my doctor wrong.

clamryn

I would want the two more weeks
I am with you Carlene. I would fight like heck. Give me whatever and I will take it for two more weeks of life.

Hair... I always fixed my hair too. Just had to be in place when I walked out the door. But I could life the rest of my life in a wig if I have to. I too have told my daughter.. no matter where I go.. doctor, hospital, ambulance, funeral home.... Get the wig and put it on my head. Glad to hear about the glue.

Linda

Hissy_Fitz

Tethys41 said:

Feeling sick
If I knew for sure that the Taxol would add only a few more weeks, I'd opt out, not because of the hair loss, but because Taxol makes me feel really lousy. I would spend the time instead, trying anything and everything else that has a record of fighting cancer. Yes, I might even try eating the infamous asparagus.

I'm a poster child for
I'm a poster child for Taxol. I took 18 straight months of it and it did nothing but give me mild to moderate fatigue. Well, that and the hair loss thing. I really count myself lucky in that respect.

Carlene

Mum2bellaandwilliam

clamryn said:

I would want the two more weeks
I am with you Carlene. I would fight like heck. Give me whatever and I will take it for two more weeks of life.

Hair... I always fixed my hair too. Just had to be in place when I walked out the door. But I could life the rest of my life in a wig if I have to. I too have told my daughter.. no matter where I go.. doctor, hospital, ambulance, funeral home.... Get the wig and put it on my head. Glad to hear about the glue.

Linda

Bring on the Taxol! to hell
Bring on the Taxol! to hell with the hair!!!!!!

poopergirl14052

Mum2bellaandwilliam said:

Bring on the Taxol! to hell
Bring on the Taxol! to hell with the hair!!!!!!

I will take 2
weeks also but it would really be one week. The first week I would be in bed due to side effects and the next week I would make the most of. I have come to the conclusion my life is worth more than a head of hair or lashes or brows...val

Rookerbird

The "hair talk" may have
The "hair talk" may have been one of her humorous side notes...

I think Sarah was presented with the option of Topotecan or Taxol. Bottom line: nothing was working, and her doctors thought nothing was likely to work. She had to drag oxygen tanks everywhere she want. She was always exhausted. None of the chemos had made any headway against the lung mets. The impression I got from her blog was that getting 1-2 more weeks wasn't worth it if those two weeks consisted of lying in bed and feeling crummy. She chose to end treatement on April 14 and died on May 3.

After I finished 6 rounds of carbo/taxol, then six weeks of daily radiation, my doctor presented me with three options (each of which he was comfortable recommending).

Do nothing.
Monthly maintenance Taxol.
Femara.

I didn't care about being bald. But I was TRULY SICK of having my life and my schedule held captive by this disease! I wanted a chance to go a measly 30 DAYS without having to go to the hospital, or the blood lab, or the infusion center, or my doctor's office, or a pharmacy.

So I chose Femara, which was a once-daily pill. Had Femara made me bald, and Taxol NOT made me bald, I still would have chosen Femara. Right now, I'm on Doxil, which does not cause hair loss. However, the issues related to hand/foot syndrome are WAY more frustrating than baldness.

I tend toward Sarah's philosphy: The percentage of happy is more important to me now than the number of days. Quality over quantity.

I wouldn't take ANY treatment that had ANY negative side effect to extend my life by just "a few more weeks."

-Kathy

lmede64

diva in distress
Hi, Carlene--my sister, who was diagnosed with stage IVB UPSC in Feb. 2011, has been a girly girl for as long as I can remember (and I am 65 and a year older, so that's a long time). My sisters and I fondly refer to her as the diva. In fact I maintain a private website for her which I have named "Diva in Distress".

I can't tell you the amount of time I have spent over our lifetime waiting for her to finish her hair, makeup, etc.,(in her younger days even before we went to the beach). I am not into hair and makeup, so the wait time was agonizing for me. When she came out the operating room after having her hysterectomy, the first thing the OR nurse said was that she was in recovery and her hair looked great (and it did).

My entire family and all of her friends were concerned about how she would handle losing her hair. This is not to say it was our only concern, but it was one of the first responses from many of us. After an initial mini-meltdown, she got busy looking for a wig, found a great one and aside from discomfort, she takes it in stride. She has learned to skillfully put on false eyelashes and is considering getting tattooed eyebrows. She has just had her 5th treatment, and in the words of Fernando Lamas "You Look Marvelous". In checking the web for the correct spelling of FL, I came across the original skit on You Tube, http://www.youtube.com/watch?v=hZl3gGV4H6c--still funny.

On your recommendation on a previous CSN post, I read the Carcinista's website and was so impressed not only with her bravery and wit but also with her writing skill. What a loss.

This is not to diminish the gravity of the situation but more an opportunity for me to give praise to my sister, you and all the other women out there who are facing this illness.

Thank you for sharing,
Linda

kayandok

If it were just about the hair,
I would choose to take anything that would extend my life even by 3 days. I kinda like my little bald head. But, I suspect that Sarah's decision to stop treatment was very complicated, not really just about the hair.

I am also happy to hear about the glue. That is good to know!!! I may need some too.

kathleen

Hissy_Fitz

kayandok said:

If it were just about the hair,
I would choose to take anything that would extend my life even by 3 days. I kinda like my little bald head. But, I suspect that Sarah's decision to stop treatment was very complicated, not really just about the hair.

I am also happy to hear about the glue. That is good to know!!! I may need some too.

kathleen

Sarah's decision was not
Sarah's decision was not solely based on hair/no hair, but she did write, and I quote:

“What else is there?” I asked, in proper English.

She said I could go on weekly Taxol, although as we all know and love, the #1 side effect of Taxol is baldness, and I’m sorry, but I promised myself a year ago that I wouldn’t go out without hair. Plus, there would be only the same very slight percentage chance of there being any effectiveness at all, and that would only extend my life by a week or two, all while lying in bed feeling crappy.

So with firm conviction, I said, “Enough..."

kellyh33

Hissy_Fitz said:

Sarah's decision was not
Sarah's decision was not solely based on hair/no hair, but she did write, and I quote:

“What else is there?” I asked, in proper English.

She said I could go on weekly Taxol, although as we all know and love, the #1 side effect of Taxol is baldness, and I’m sorry, but I promised myself a year ago that I wouldn’t go out without hair. Plus, there would be only the same very slight percentage chance of there being any effectiveness at all, and that would only extend my life by a week or two, all while lying in bed feeling crappy.

So with firm conviction, I said, “Enough..."

Oh Dear
This actually makes me feel sick.....

pattysoo

a few weeks
If they would be good weeks, I'd probably take it. The hair loss does not bother me too much. But quality of life is another issue. And it would be harrowing for the family to have that prolonged countdown thing going on. It sounds to me like Sarah weighed all the variables and she didn't want her family to deal with prolonged suffering vs a quick exit. Her chances of improvement on taxol were slim. Even though no one can ever say for sure how individuals will respond to any treatment, I think Sarah probably felt something in her heart that it was time to let go. I sure hope I have the same confidence if I'm ever in a similar situation. I've discussed this with my family, because it would have to be their decision too. Soooooo hard!

Hissy_Fitz

pattysoo said:

a few weeks
If they would be good weeks, I'd probably take it. The hair loss does not bother me too much. But quality of life is another issue. And it would be harrowing for the family to have that prolonged countdown thing going on. It sounds to me like Sarah weighed all the variables and she didn't want her family to deal with prolonged suffering vs a quick exit. Her chances of improvement on taxol were slim. Even though no one can ever say for sure how individuals will respond to any treatment, I think Sarah probably felt something in her heart that it was time to let go. I sure hope I have the same confidence if I'm ever in a similar situation. I've discussed this with my family, because it would have to be their decision too. Soooooo hard!

The "countdown" is certainly
The "countdown" is certainly a horrible thing, for everyone concerned. When I talked to Nancy's mom, after the doctors gave her 4 weeks, she said, "It's already been two weeks. I can't believe how quickly she's gone downhill, and that she only has two more weeks to live."

When the oncologist told me that my kids' dad had three to six months left, I tried so hard not to count down the days, but it's impossible to keep your mind off that death calendar. He lived only three months, and it was a shock when I realized, at the very end, that we were looking at days, not weeks or months.

Carlene

lindaprocopio

Hissy_Fitz said:

The "countdown" is certainly
The "countdown" is certainly a horrible thing, for everyone concerned. When I talked to Nancy's mom, after the doctors gave her 4 weeks, she said, "It's already been two weeks. I can't believe how quickly she's gone downhill, and that she only has two more weeks to live."

When the oncologist told me that my kids' dad had three to six months left, I tried so hard not to count down the days, but it's impossible to keep your mind off that death calendar. He lived only three months, and it was a shock when I realized, at the very end, that we were looking at days, not weeks or months.

Carlene

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.

paris11

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.

Linda, Sweet Girl -
Wishing you many wonderful months of peace and Joy.

Have a spectacular vacation on the beach.

My best,

Connie