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Goal-setting in your treatment options, for the long haul

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Just before Thanksgiving I had my cancer come back after just a 5-month remission, and went immediately back into weekly chemo. Now, after 10 rounds of a mild single-agent chemo that is meant more to 'hold me in check' than anything, I think it is again decision time. My chemo-oncologist doesn't believe a cure is an option any more, and when pressed, did admit that he sees me taking chemo the rest of my shortened life, with the slim possibility of some very sort remissions/breaks (2, 3 months max breaks). His strategy is to give me the mildest chemo that stops/slows the progrssion of the disease, balancing treatment decisions with quality of life factors. My current 'easy chemo' only makes me tired and bald, but I am not nauseated or in pain and have no neuropathy and only very minimal lymphodema (chubby ankles). I am still working 30 hours a week and going out to movies and restaurants, even with chemo every Monday and Neupogen shots every Tuesday, Wednesday and Thursday.

So why am I questioning this treatment regime? Because I want to believe that if I went 'balls-to-the-wall' again with a full-out harsher chemo cocktail, I just MIGHT be able to shoot myelf into some kind of prolonged remission. I don't mean YEARS LONG remission; I'm not that greedy; but 6 to 12 months of NORMALCY. I know that's what my husband wants. It's not fair to him to have this diminished version of myself for years, and never even try to be ME again. He gets steadily more depressed.

I am getting a PET/CT scan Monday and will have a clearer picture of what is going on with me. That will trigger appointments with the rest of my oncology team and the chance to get other opinions on this. Maybe my dream of a 6-12 month remission isn't even a possibility, and I intend to ask then that. And maybe my body is too beaten down by the very aggressive surgery/chemo/radiation I did initially in my all-out "go-for-a-cure" treatment protocol in 2008/2009, to survive another all-out try. But maybe someone will support my idea of a more aggressive treatment for me now.

Long post. Sorry. Has anyone else wrestled with this? I think I'd rather die trying to achieve a decent-length remission, than take chemo until the cancer finally takes me. I just don't think surviving as an always-sick person is fair to my husband. He's only 57 and young enough to start over, so is it fair for me to limp along another 3 or 4 (10!) years as an increasing burden to him as caregiver, and leave him in his 60's or 70's, poorer and older? Or do I roll the dice, fight my oncologists for the experimental harsher chemos, and try and get some 'quality time' before I die?

(In reference, I have a very rare aggressive recurrent cancer that little is known about and very few drugs FDA approved to try. Statistically, after initial recurrance, you have an average life expectancy of 15 months, and I've already burned up 3 of those! I plan to beat those stats, whatever I decide to do next. The stats are based on tiny samplings because the cancer is so rare.)

CanadaSue's picture
CanadaSue
Posts: 339
Joined: Apr 2006

Linda my heart breaks for you!

I know you have been fighting a long time. They are coming up with new drugs everyday to fight this beast, so please keep fighting. I know no one can decide this for you, but yourself.

My husband is fighting stage IV colon cancer, and I know full well what the outcome will be but I want him to keep fighting, as I am sure your husband feels the same way about you. As a caregiver it is very hard to see the treatments Bill goes thru,and know there is nothing I can do to make him beter. But those treatments are giving him more time, and more memories. I would not want him to stop fighting!

I have followed your journey, and noticed you hadn't posted in a while and had hoped that you had gone into remission.

My thoughts and prayers are with you! Please keep us updated.

Hugs,

Sue

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

Hi Linda

I agree with Sue, the decision is yours. It is a very difficult decision. You have gone through quite a lot. I too had decisions to make when the cancer returned. My decision was to do whatever it takes to fight this disease. But at the same time I demanded a break when I felt my body was too weak for the planned treatments.

Do the research. Pray and get prayer warriors to continue to keep you lifted up in prayer. Follow your heart and fight the good fight of faith. Please keep us posted.

Take care and be blessed. Because you too will win-the-fight!

terato's picture
terato
Posts: 384
Joined: Apr 2002

Linda,

Cancer, like earthquakes, are occurrences which defy logic or predictability. (I only use earthquakes because one recently occurred just west of Chicago, but hundreds of miles from the New Madrid fault, where it geologically should occur.) Pancreatic cancer has very poor survival rates, yet my reconstructive surgeon is still practicing years following diagnosis and treatment for pancreatic cancer. Embryonal testicular cancer (my diagnosis) is supposed to be extremely easy to treat (and beat), yet a guy on the testicular cancer thread suffered a recurrence after being clean for 35 years, which has caused me some sleepless nights, since one of my tumor markers is elevated from where it was a year ago! My father "survived" prostate cancer only to die of unrelated stroke. I could get run over by a truck on the way to my next blood test!

If a cancer is rare, that implies that they really don't have many case studies from which to draw conclusions. This can be comforting in that "you" might be the patient to provide reliable information about what works, but you will never know unless you follow whatever course of treatment appears the most promising.

Linda, I stopped setting goals for myself years ago when I realized that "life" really is like that box of chocolates, unpredictable, scary, but too wonderful to give up without a fight.

Love, Courage, and Peace of Mind,

Rick

CherylMike
Posts: 118
Joined: Oct 2009

My husband passed away last October. He fought for over 2 years (originally given 3-6 months). He would go through treatment, be sick for a time, and then go back to our "new normal" life. This continued throughout his illness. I would have supported Mike, no matter what he elected to do. However, I am so glad that he elected to fight. It gave me (46 yrs old when diagnosed) and my three children (11, 20 and 22) more time with him. He needed more and more care, but that was VERY ok. We just adapted to our "new normal" (eg. we love to hike and would go for miles, when we went later, we would not go very far and Mike would need to rest often - the great thing about that is we just sat and talked and took in the beauty around us). One of the main reasons Mike fought was to spend more time with us, but we always hoped that a treatment would come along that he would respond to. Every day doctors/scientist are researching cures and treatments for cancer and new treatments are getting closer and closer to FDA approval. I am SO glad that I had Mike for 25 years - EVERY single year. I am sure that whatever you decide will be right for you and your husband. I would encourage you not to give up but to keep fighting. I will be praying for you~Cheryl (I needed to get on antidepressants to help me, which they really did. You may suggest this to your husband.)

grandmafay's picture
grandmafay
Posts: 1614
Joined: Aug 2009

My husband fought stage 4 colon cancer for 6 years before his death this last October. He wore a bracelet that said hope until the day he died. He set many short-term goals and accomplished most. He fought aggressively because that is what he wanted to do. He bought time, and when he felt like it we made memories. Sometimes, he only felt up to doing things for just a few days or even a few hours or minutes. That's ok. Savor the time you have. No one, not even the doctors, know how much time any of us have. If I learned anything from my husband's cancer and death, it's to try to focus on the now. Try to be totally present in this moment. Make goals and fight for time if you choose, but be glad you have today. Hug those you love and take care, Fay

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My DIL is a CT-scan technician and was able to get the inside scoop on my PET/CT scan I had yesterday, and ….DRUM ROLL,,,,,

MY PET/CT from yesterday WAS GOOD!!!! The radiologist told my DIL that NOTHING had uptake on the PET (NOTHING LIT UP!!) The enlarged node under my armpit: GONE! The one in my pelvis: GONE! The one by my stomach is now much smaller and DID NOT LIGHT UP!! I honestly don’t know what this means as far as me staying with my weekly chemo, and probably won’t know until I see my oncologist on the 27th, but the radiologist said “That’s a good PET scan. Congratulations!” My daughter-in-law was crying when she told me; SO happy! She’s on her way over with a bottle of champagne!!

WOO WOO!! I don’t want to celebrate TOO much without the official word, but this all looks sooooooo good!!!!!!!!!!! I know the cancer isn't really gone and lies in wait in microscopic form to come back again, but this GOOD NEWS was so unexpected, so VERY unexpected. I;m guessing it means that I will stay on the weekly maintenance chemo infusion for another 3 months until my next scan. What a roller coaster!! I better hang on and enjoy the ride!!

grandmafay's picture
grandmafay
Posts: 1614
Joined: Aug 2009

Good news is always great! Just keep on top of things. Fay

CanadaSue's picture
CanadaSue
Posts: 339
Joined: Apr 2006

Linda,

That is Great news! Celebrate!

Hugs,

Sue

CanadaSue's picture
CanadaSue
Posts: 339
Joined: Apr 2006

Linda,

That is Great news! Celebrate!

Hugs,

Sue

terato's picture
terato
Posts: 384
Joined: Apr 2002

You teach a very valuable lesson. "We" have a tendency to fear the worst, because of what has already happened to us. I am no less "guilty" than any other cancer survivor. My AFP tumor marker is elevated, and I immediately begin imagining where they will find it this time, despite my history of experiencing elevated AFPs in the past with no evidence of recurrence.

I guess what Felix Unger said about making assumptions is true?

Love, Courage, and Congratulations!

Viva, Linda!

Rick

CherylMike
Posts: 118
Joined: Oct 2009

Linda~ I am so happy for you!! ~Cheryl

wonderingalice
Posts: 49
Joined: Feb 2010

Linda, I am having a similar struggle in my mind with my mom. I know that your situation has changed since this post, but I'm glad I found it as it as very relevant to what we are dealing with. My mom and I were both shocked that they are not going for chemo that proved most effective (in the Denver oncologist's words "her best chance") in the tissue assay and are instead "trying" the anti-estrogen. We don't know if she should speak up, fight for full steam ahead...it all feels like gambling for time. I am just hoping for enough "normalcy" that we can take another trip together...travels with her have been the best times in my life.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Even with my clear CT/PET scan, the treatment decision was not automatically made. Because my tumor-marker blood test (CA-125) is still higher than normal my chemo-oncologist did an about-face and DID want me to now go "balls-to-the-wall" one more time with a powerful chemo regime. (I think his hope for me to achieve a long remission was invigorated by the unanticipated surprising-good CT/PET scan results.) But my gynecologic-oncologist disagreed and could see no reason why I should continue to subject myself to chemo now that I could safely take a chemo break. I won't be able to get another CT/PET for 4 months, so that would mean a possible 4-month chemo break! We will take another CA-125 in 6 weeks, and if it is elevated, probably wait a few weeks and do it again. But my gynecologic-oncologist thinks that slightly elevated CA-125 is my personal 'new normal', as I have a lot of bowel inflammation from all the radiation I did that may be shooting that number up, unrelated to cancer progression.

I was fighting to get my chance to go full-out on chemo, but then when presented with the option of taking a chemo break NOW, I jumped at it! How strange and whimsical my decision-making process is! The allure of a chemo-free spring was just too seductive! And this break will give me some time to get stronger before the next chemo go-round. And what really made the decision for me was when my gyn-onc said "You may already be in the first days of a prolonged remission; who knows?" (Hope springs eternal!)

So I am taking a chemo break, to be re-evaluated in 6 weeks when I get CA-125 tested again. I plan to take a vacation with my husband somewhere during my break (Costa Rica, maybe??), and I've promised myself that I will exercise daily and eat super-healthy and get myself in tip-top physical shape. And that way I'll be BATTLE-READY if I do need to start "balls-to-the-wall" chemo when 'the beast' rears its ugly head once again. In the meantime: JOY! JOY! JOY! & hope!

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