What's next if chemo/radiation isn't working??

aau1353

Hi Everyone,

This is my first post. I've been on and off reading all of your posts and stories and wonderful words of encouragement/advice. Thank you and God bless you all. I am on this board because my mom is battling this ugly disease. Some brief background -- in Aug 2010 my mom has had a recurrence of Endometrioid adenocarcinoma, stage IIA, grade 2. After a complete hysterectory and radiation only in 2007(as recommended by the doctors and was told that she is pretty much "cured"), there is now a large tumor pressing on one of her left lumbar nerves causing severe pain and neuropathy in her left leg and also spread to the periaortic nodes. Carbo/Taxol, Radiation, Ixempra have all failed on us. I have been the most positive out of all my siblings/dad...hopeful I should say, but every CAT scan and every check point has shown negative results. The disease has only progressed and each week I see her getting worse and worse. She is young, only 60 and she's in so so much pain, it's unbearable for her and for the family. She is our rock and we can't see her go...ugh this is hard. So now to the point of all this. What's next for her?? I tried following the anti-cancer diet by Dr. Servan-Schreiber. My problem was that she lost her appetite of the "good" foods that she had to eat as opposed to the foods that she wanted to eat. This caused her to lose a ton of weight. So instead, I tried letting her eat a mix of the "good" stuff and the "not-so-good" stuff and started her on 8g of curcumin a day. It doesn't seem to be working though. I'm questioning everything now.

Did I make her suffer by not letting her enjoy life and eat all foods?

Or did I not do enough - be more strict with her diet?

Should she be avoiding all carbs, and all types of sugar, such as fruits)?? I read that member, California Artist, is on all natural remedies that seems to be working. If you are reading, what's your suggession?

What do I do? I'm lost and I don't want to lose my mom. I need her.

Thanks for listening and best to all of you beautiful, strong ladies.

xoxox,
Annette

lindaprocopio

I wouldn't worry about her diet too much, just eat healthy food.
When you are in remission, eating the Anti-Cancer Diet makes all kinds of sense. But when you are in active treatment, many herbs interfere with chemo drugs and food tastes so strange from the drugs,....I say let her eat what she wants, within reason. She needs to have protein in her diet and you wouldn't want to let her just live on cookies, but I see NO advantage in denying her goodies if they give her pleasure. Delicious food is one of life's earthly pleasures, and she should be savoring all of those that she can; I know I do!

You mentioned radiation: have you gotten a second opinion on the various types of palliative radiation available for pain control. Radiation is about 85% effective in shrinking tumors to control the type of pain you are describing. Although radiation isn't indicated for me for active treatment, my radiation oncologist said to call him if I had pain or numbness from a tumor or enlarged lymph node pressing on a nerve or my spine, etc., and he will almost certainly be able to help me with that. There are lots of kinds of targeted radiation used palliatively to control pain so that might be worth exploring aggressively.

Has anyone suggested Avastin? My cancer is very chemo-resistant, but Avastin seems to be holding me stable. I'd try for radiation to shrink that tumor away from the nerve, and then Avastin to hold her in place. ((((((Annette)))))

Northwoodsgirl

Your Mom
Annette, Your Mom is blessed to have a loving and caring daughter. Please don't second guess your actions ---should of, would of and could of...I know because my Mom died of endometrial cancer 6 yrs ago at 72yrs old and I was diagnosed at the age of 53 in 2009 (so far no reoccurance).
I remember that even when my Mom was in hospice, I stopped her from eating chocolate cake because I thought she was going to aspirate it! I so wish that I had let her eat that piece of chocolate cake.... Sugar didn't cause her cancer-its a complex cascade of cellular damage and it only takes one cell to get out of whack for cancer to start.
I think that Linda gives great advice- palliative radiation can help control her pain. Also there are other "non standard" chemo drugs that could possibly help shrink tumors and improve her quality of life. The oncologist needs to make sure that your Mom & Dad and you understand what the treatment options are and what the plan is...very specifically.
Are you getting care from a major academic center where research occurs? There may be a clinical trial she could be accepted in. Ask her gynecologist/oncologist what trials may be available. Please keep up your hope for a remission. I hope that your Mom hasn't given up because of the reoccurance. Have you talked to her radiation oncologist? Getting your Mom's pain under control should be a priority so she can think clearly about what her options are. Is there a pain specialist working with her? My heart goes out to you, your Mom and family...
(((Hugs)))
Lori

nempark

About your mom
I couldn't have said it better than the ladies on this board, their advise is really good. What I can tell you is that every child feels the way you feel when a parent or sibling get ill "what if", Do not blame yourself, just keep on taking good care of your mom and thank God that you are in a position to be there for your mom. Take care of yourself and stop feeling guilty for something that you have no control of. I send you and mom lots of hugs and good wishes. June Keep us informed.

daisy366

nempark said:

About your mom
I couldn't have said it better than the ladies on this board, their advise is really good. What I can tell you is that every child feels the way you feel when a parent or sibling get ill "what if", Do not blame yourself, just keep on taking good care of your mom and thank God that you are in a position to be there for your mom. Take care of yourself and stop feeling guilty for something that you have no control of. I send you and mom lots of hugs and good wishes. June Keep us informed.

Annette
I agree with the other posters. You did all your research and encouraged your mother because you loved and cared for her. Please don't put blame on yourself. In the end, we are all responsible for our choices - your mother CHOSE to follow your advice which was very solid.

But as others have said, I think she should eat what she can and wants to eat and what her doctors recommend.

I hope she is able to find relief. Cancer is so unpredictable!!!!

Blessings. Mary Ann

sleem

care to you and your mom
Annette,
I agree with what has been said by the previous ladies. I didn't have daughters. It is difficult to speak with sons. Your love comes across so strongly. As a survior, I had my own what-if's in my mind about UPSC in my body, what to eat, what treatment, what to do now.. I still do and that will continue. However, I'm trying to do what I can to have some control over what is mainly not in my control. This disease baffles many doctors, researchers, and nutrionists, etc. We are dealing with so many variables that are yet to be discovered. So we are learning. Since before and after surgery, my immediate family just can't discuss this with me nor offers research or ways to improve my situation. It is not that they do not love me, it is hard for them to say it out loud as it makes it real.
You and your mom appear to have been able to to work with each other for her health. You have been strong to face it with her, add information to improve circumstances. I admire you. I am just 62 and would be grateful for what you have done to provide help in fighting this if you were my child. . It is a common factor that many loved ones or friends just can't acknowledge this stuff. It sometimes makes the patient feel alone. You are right there with you mom...this is such a gift between both of you... you are on this site trying to help at this very moment. Hang in there and understand that we moms know this is hard on our kids...you have shown love... so forget the "if's" and know you are part of her health team but not a team of just one...but the most special part loved and giving love.

aau1353

sleem said:

care to you and your mom
Annette,
I agree with what has been said by the previous ladies. I didn't have daughters. It is difficult to speak with sons. Your love comes across so strongly. As a survior, I had my own what-if's in my mind about UPSC in my body, what to eat, what treatment, what to do now.. I still do and that will continue. However, I'm trying to do what I can to have some control over what is mainly not in my control. This disease baffles many doctors, researchers, and nutrionists, etc. We are dealing with so many variables that are yet to be discovered. So we are learning. Since before and after surgery, my immediate family just can't discuss this with me nor offers research or ways to improve my situation. It is not that they do not love me, it is hard for them to say it out loud as it makes it real.
You and your mom appear to have been able to to work with each other for her health. You have been strong to face it with her, add information to improve circumstances. I admire you. I am just 62 and would be grateful for what you have done to provide help in fighting this if you were my child. . It is a common factor that many loved ones or friends just can't acknowledge this stuff. It sometimes makes the patient feel alone. You are right there with you mom...this is such a gift between both of you... you are on this site trying to help at this very moment. Hang in there and understand that we moms know this is hard on our kids...you have shown love... so forget the "if's" and know you are part of her health team but not a team of just one...but the most special part loved and giving love.

Thank you all
I really appreciate all of your comments. Thanks so much. It's hard to relate this to the people around me. Unless they have been directly affected by it like we have, as cancer patients and caregivers (I myself am NED from thryoid cancer in 2007), they really cannot imagine what it's like. So I find it really difficult to discuss with others.

Linda - I've heard about Avastin here on the board. I'm so glad to hear it is working for you. I will make sure to ask her gyn/onc about it. I know some insurances don't cover and it's real expensive, but that is definitely something I want my mom to consider. It's an anti-angiogenisis which cuts off the blood supply to cancer cells and in essence is suppossed to prevent continued growth.

Regarding radiation, I'm not sure what type it was. I believe it was a targeted radiation. My mom's radiation onc was almost definite that it was going to shrink the tumors. He was wrong - it grew.

Lori - one of her gyn/onc is affiliated with MD Anderson and therefore she took part of one of the clinical trials - Ixabepilone (Ixempra). Again, the tumors grew after 2 treatments so she was taken off the trial.

The next step that we are looking at is surgery to remove pressure off the nerves of her spine and relieve some pain. I hope it works. If not, pain mgmt specialists are an option. Then we'll see her other gyn/onc for other treatment options.

And Yes, you all are right about the foods. Her diet and restrictions are out the window (for the most part). I want her to celebrate her life and live in the present. Tomorrow is her 61st birthday and I'm going to make sure she enjoys a big piece of cake and all her favorite foods!

Sleem - my brothers/dad are the same way - they offer her support in the best ways they can/know how and I know they love my mom so very much, as I'm positive your sons do. Moms are irreplaceable.

My heart, thoughts and prayers go out to all of you. Keep on fighting. One day a cure will be found.

Thanks again for listening.