LINDA--what about your treatment and latest tests results?

Thanks for asking about me, June. I feel good!
I hope this doesn't sound like I've given up, because I sure haven't, but I don't think "NED" is even a goal for me anymore. My cancer is too advanced and too resistant to chemo for any of us to think that I will be able to achieve remission again. Instead, our goal is for me to be STABLE, and try and hold my cancer where it is without additional disease progression. I have no symptoms, so "where I am" is still a very good place to be! And I have been sooooo lucky so far that I have no side effects from my treatments, so being in continuous chemo isn't that awful either. I hate to even post things like this, because most of you will never have to know the reality of advanced cancer, and how your treatment goals change once you recur more than once. Life is still very good for me; beautiful and joyful. But NED or a cure are not things I waste time wishing for now. I just want to keep feeling good enough to live a vibrant life and to stay alive as long as I can this way.

Even though all of my blood counts were down, my oncologist allowed me to have my Avastin infusion yesterday, as long as I promised to come in today for a Nuelasta shot. But I am to take a 2-week break from taking the daily 50 mg. Cytoxin chemo pill to see if that allows my bone marrow to recover and my blood counts to come up again to safe levels. Then we'll see about adding it back in. My CA125 went up a little, not much, and is still lower than the horrifying 1500 it was before I started on the Avastin. I've had 5 Avastin infusions so far, and my blood pressure remains perfect, even though high BP is often a side effect of Avastin. All in all, this is the EASIEST chemo I've even been on, and I almost feel like I'm on a chemo break because my energy level and appetite and general well-being is so good on this. I've been gardening 2 or 3 hours a day when it's nice out, and pleased how strong I still am. Life is good!

lindaprocopio said:

Thanks for asking about me, June. I feel good!
I hope this doesn't sound like I've given up, because I sure haven't, but I don't think "NED" is even a goal for me anymore. My cancer is too advanced and too resistant to chemo for any of us to think that I will be able to achieve remission again. Instead, our goal is for me to be STABLE, and try and hold my cancer where it is without additional disease progression. I have no symptoms, so "where I am" is still a very good place to be! And I have been sooooo lucky so far that I have no side effects from my treatments, so being in continuous chemo isn't that awful either. I hate to even post things like this, because most of you will never have to know the reality of advanced cancer, and how your treatment goals change once you recur more than once. Life is still very good for me; beautiful and joyful. But NED or a cure are not things I waste time wishing for now. I just want to keep feeling good enough to live a vibrant life and to stay alive as long as I can this way.

Even though all of my blood counts were down, my oncologist allowed me to have my Avastin infusion yesterday, as long as I promised to come in today for a Nuelasta shot. But I am to take a 2-week break from taking the daily 50 mg. Cytoxin chemo pill to see if that allows my bone marrow to recover and my blood counts to come up again to safe levels. Then we'll see about adding it back in. My CA125 went up a little, not much, and is still lower than the horrifying 1500 it was before I started on the Avastin. I've had 5 Avastin infusions so far, and my blood pressure remains perfect, even though high BP is often a side effect of Avastin. All in all, this is the EASIEST chemo I've even been on, and I almost feel like I'm on a chemo break because my energy level and appetite and general well-being is so good on this. I've been gardening 2 or 3 hours a day when it's nice out, and pleased how strong I still am. Life is good!

Blessing and thanks from a fellow traveler
Linda, you are such a beacon of light! Not only are you a warriorette, but also a role model!

Thank you,
Sara

lindaprocopio said:

Thanks for asking about me, June. I feel good!
I hope this doesn't sound like I've given up, because I sure haven't, but I don't think "NED" is even a goal for me anymore. My cancer is too advanced and too resistant to chemo for any of us to think that I will be able to achieve remission again. Instead, our goal is for me to be STABLE, and try and hold my cancer where it is without additional disease progression. I have no symptoms, so "where I am" is still a very good place to be! And I have been sooooo lucky so far that I have no side effects from my treatments, so being in continuous chemo isn't that awful either. I hate to even post things like this, because most of you will never have to know the reality of advanced cancer, and how your treatment goals change once you recur more than once. Life is still very good for me; beautiful and joyful. But NED or a cure are not things I waste time wishing for now. I just want to keep feeling good enough to live a vibrant life and to stay alive as long as I can this way.

Even though all of my blood counts were down, my oncologist allowed me to have my Avastin infusion yesterday, as long as I promised to come in today for a Nuelasta shot. But I am to take a 2-week break from taking the daily 50 mg. Cytoxin chemo pill to see if that allows my bone marrow to recover and my blood counts to come up again to safe levels. Then we'll see about adding it back in. My CA125 went up a little, not much, and is still lower than the horrifying 1500 it was before I started on the Avastin. I've had 5 Avastin infusions so far, and my blood pressure remains perfect, even though high BP is often a side effect of Avastin. All in all, this is the EASIEST chemo I've even been on, and I almost feel like I'm on a chemo break because my energy level and appetite and general well-being is so good on this. I've been gardening 2 or 3 hours a day when it's nice out, and pleased how strong I still am. Life is good!

Linda, I too have been thinking about you
Glad you continue to feel good. Glad that Life is Good. I am so happy that the Avastin is keeping you stable. It is great that your side effects are minimal. I hope your blood count recovers with your two weeks break. The goals do change as recurrence occurs. You continue to have such a positive attitude and continue to be an inspiration to us all.

Glad you are able to enjoy your gardening each day while the weather is good. I am anxious to get back to Illinois and see what is going on in my yard. Spring time is such a beautiful time of year. May you continue to see the joy and beauty in each day. Hope you are making some fun memories with those grandchildren. Hang in there and continue to enjoy each day. In peace and caring.

HellieC said:

Linda - you have a wonderful approach to life
I am so glad you are feeling good and coping with the ongoing chemo. You have a wonderful attitude and approach to life. As you say, it's not giving up, it's accepting where things are and trying to keep them there so you can continue to enjoy life.
I have been surprised at how my own thoughts and feelings have changed as I have gone through my recurrences. I started out with a very black and white view of health and illness and then along the way have come to realise that there can be a myriad of shades of grey - all of which are perfectly acceptable in terms of living a quality life. It's how we feel that matters, rather than what's going on inside us!
Enjoy your garden and the good weather - we are being blessed with some nice sunshine here in England today, so we are off a few miles down the road for a day on by the sea.
Thinking of you
Helen

Linda you teach us all
so many important lessons. Of course, the research and knowledge you're gained and shared has been very, very valuable, but more so your philosophy and approach to living with this disease provides such a wonderful perspective. You are simply a wonderful teacher and stable is a good thing. I hope you stay there. And - you should write a book when you're not gardening.

Thank you.

Suzanne

lindaprocopio said:

Thanks for asking about me, June. I feel good!
I hope this doesn't sound like I've given up, because I sure haven't, but I don't think "NED" is even a goal for me anymore. My cancer is too advanced and too resistant to chemo for any of us to think that I will be able to achieve remission again. Instead, our goal is for me to be STABLE, and try and hold my cancer where it is without additional disease progression. I have no symptoms, so "where I am" is still a very good place to be! And I have been sooooo lucky so far that I have no side effects from my treatments, so being in continuous chemo isn't that awful either. I hate to even post things like this, because most of you will never have to know the reality of advanced cancer, and how your treatment goals change once you recur more than once. Life is still very good for me; beautiful and joyful. But NED or a cure are not things I waste time wishing for now. I just want to keep feeling good enough to live a vibrant life and to stay alive as long as I can this way.

Even though all of my blood counts were down, my oncologist allowed me to have my Avastin infusion yesterday, as long as I promised to come in today for a Nuelasta shot. But I am to take a 2-week break from taking the daily 50 mg. Cytoxin chemo pill to see if that allows my bone marrow to recover and my blood counts to come up again to safe levels. Then we'll see about adding it back in. My CA125 went up a little, not much, and is still lower than the horrifying 1500 it was before I started on the Avastin. I've had 5 Avastin infusions so far, and my blood pressure remains perfect, even though high BP is often a side effect of Avastin. All in all, this is the EASIEST chemo I've even been on, and I almost feel like I'm on a chemo break because my energy level and appetite and general well-being is so good on this. I've been gardening 2 or 3 hours a day when it's nice out, and pleased how strong I still am. Life is good!

Thank you
I am not a regular on this site. Yet, I have always felt better with your information. Please keep letting us hear from you. Are you planting veggies or flowers?