My Mom Cancer Is Worse -- How Did You Cope?

[Guest Summerflowers]

Mom's stable lung cancer recently got worse. She was diagnosed in March of 2005. She has fluid in the chest cavity surrounding the lung causing labored breathing; doctors removed the fluid and found evidence of Adenocarcinoma non-small cell on cancer, stage IIIB. Within one week one third of the fluid had returned.

She is not in good health -- she also has emphysema and weakness on one side of her heart. So she is not a candidate for chemotherapy. She had radiation one year ago which made things stable for one year. She cannot have more radiation to the same part of her lung.

The doctor estimates she has 9-12 months left to live and 5-6 good months. While I know these are estimates, we are watching her decline weekly. Walking one block to a restaurant wears her out. She can socialize for about two hours a day without getting overly fatigued. The doctor is probably about right...

I am grateful that my mom does get out most days and do an activity. She also lives in a retirement home where she plays bridge, knits caps for newborns, has two "boyfriends". She is also discouraged and frustrated with how much he needs to sleep.

I'm saddened and scared. I can't imagine a world without her -- she's always been there.

I'm wondering if people would share with me how they spend time with their parents as they see them living through this disease.

[missyk]

I'm so sorry you're having a rough time of it right now. This disease is such a rollercoaster and there are no small ups or downs, it seems.

As far as your question goes...

All I can tell you is how we go about our lives knowing that Mom's supposedly on the last leg of this journey.

We spend time together. We do the "normal" things that we've always done. We laugh, we cry, we even argue. Every single time I see her I try to soak in all the goodness I can from the visit and keep it with me. Some things have had to be adapted. My mom's still relatively young (56) but now she doesn't drive...so we drive for her in her car. She can't walk much distance at all so if we go out we have a wheelchair or she takes a store scooter if they have one. But alot of times we just sit around talking...something we've always done anyway.

No matter how much time is left...it's time. Make memories, and enjoy it as much as you can.

Many prayers for you and your mom.

[RandyW]

First off I am Sorry to hear about your Mom. My words of wisdom from this living and Dieing from this beast Lung Cancer are this, Remember yesterday, Cherish today, and pray for tomorrow. Now moving forward, I found a link that may help you out but not sure, Click on below and you should be redirected to the Link.

http://www.geriatricservices.com/faq.asp

Second Link For treatment of Lung Cancer Emphysema;

http://www.chestjournal.org/cgi/content ... ppl_3/477S

Third Link;

http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract

This is all I can find for now. You will get more responses to this situation. Saying Prayers, and keep us posted on what is going on.

[Ry]

Have you thought about asking for Tarceva? It may hold her stable and give her some extra quality time.

[ErinC1973]

It's hard, no denying that. I lost both of my parents to LC; my mom just recently, 15 weeks ago. Both times I felt like there was a dark cloud following me around all the time no matter what I did. If we were all doing something together, I couldn't help but feel like cancer was a living beast looming in the shadows, saying, "I'm still here and don't you forget it." But memories are gifts, and now that's all I have--and I will be making no more new memories with my mom.

I have no real advice on how to make it better, but I can say that spending precious time worrying about what the doctor said--9-12 months--can be an obstacle as to how you view quality time with your mom. I am in no position to be offering advice on the subject, since I have been saying I will live a lifetime of regrets for things I did, said, or didn't do or say during my mom's illness. You really can't pack a lifetime of memories into the time frame your mom's doctor has recommended she has left. It will only drive you insane. Just being there for her, talking with her, and sharing fears, desires, and goals will give be very rewarding, trust me.

Good luck,

[Guest Summerflowers]

Thank you for your support and ideas. What I'm hearing most is spend time with my mom and make memories. Don't worry about how much time is left, spend time with her.

I welcome any other thoughts folks have.

What is Tarceva?

Laurel

[Ry]

Laurel_

Tarceva is a pill (an oral chemo) which basically keeps the cancer from growing. The side effects are a skin rash and diarhea-- worth a shot for your mom. It doesn't work for everyone but its worth a try. You can search it online for more information.

[CharlieD]

Laurel,

Really sorry to hear about your Mother. Many of us have been where she is now and dealing with it is really difficult at times. My original diagnosis was almost identical to hers and that was over two years ago. My fluid was drained and never came back due to the Chemo treatments. Did you get a 2nd opinion on whether she should have Chemo. I would suggest a National Cancer Institute which should be relatively close. They are the experts. There is always hope and if there is any out there, they'll know.

Hoping and praying for you and Mother, as you deal with this beast. We're all there for you.

CharlieD

[RandyW]

basic Info About Tarceva.

Q. What is Tarceva?

A. Tarceva is a pill you take by mouth to treat your cancer. Tarceva is used for patients with advanced-stage NSCLC who have received at least one previous chemotherapy regimen that did not work.

Q. How does Tarceva work?

A. Tarceva is a targeted treatment. It is designed to block tumor cell growth by targeting a protein called HER1/EGFR. This protein, which is present on the surface of some cancer cells and some normal cells, is important for cell growth in NSCLC. Exactly how Tarceva works is not yet fully understood; however, clinical trial results have proven that, in some patients, Tarceva can be effective in both improving patients' survival and slowing or stopping the growth of cancer.

Q. What are Tarceva's benefits?

A. Tarceva is the only FDA-approved targeted cancer therapy clinically proven to help some NSCLC patients live significantly longer. In addition to improving survival, Tarceva may slow or stop the growth of cancer - and may even shrink the tumors in some patients. Tarceva is convenient to take; it's a pill you take by mouth once a day as prescribed by your doctor. Individual results may vary.

Q. Does Tarceva really work?

A. Though individual results may vary, Tarceva has been shown to help some patients live longer. In a clinical study, 31.2% of patients who were taking Tarceva were alive one year after they started Tarceva, as compared with 21.5% of patients who took a sugar pill. Additionally, clinical studies have also proven that Tarceva can slow or stop the growth of cancer cells in some patients.

Q. How do I know if I am a candidate for Tarceva?

A. If you have locally advanced or metastatic NSCLC and have received at least one chemotherapy regimen that has not worked, you may be a candidate for Tarceva. Speak with your doctor about whether Tarceva is right for you.

Q. When in my treatment regimen can Tarceva be used?

A. Tarceva is approved as "monotherapy" (it is used without chemotherapy) for second- and third-line use for the treatment of NSCLC patients. This means that your doctor can prescribe Tarceva after one chemotherapy regimen has not worked.

Q. What common side effects may I experience with Tarceva?

A. Rash and diarrhea were the most common side effects associated with Tarceva. They were usually mild or moderate. In clinical studies, severe rash and diarrhea occurred in 9% and 6% of patients, respectively. You may also have other changes in your skin. In a clinical study, Tarceva did not have some of the side effects of traditional chemotherapy, such as a low number of infection-fighting white blood cells. Total hair loss was also less common with Tarceva. Let your doctor or nurse know if you experience side effects. Please see Side Effects and Care for more information.

Q. What other important information should I know about Tarceva?

A. All drugs have the possibility of causing some side effects. Some rare, but possibly serious, side effects may occur with Tarceva. In clinical studies, there were infrequent reports of a lung injury known as Interstitial Lung Disease (ILD) and have included fatalities. Tarceva may cause liver problems. Let your doctor know if you have a history of liver disease. Women should also avoid becoming pregnant or breastfeeding while taking Tarceva. Please see Safety Information for details.

Q. What signs or symptoms should I watch for?

A. Call your doctor right away if you have these signs or symptoms:

Severe or persistent diarrhea, nausea, loss of appetite or vomiting

Onset or worsening of unexplained shortness of breath or cough

Eye irritation

Let your doctor know if you are taking other prescription medications, over-the-counter drugs or herbal supplements.

Q. What can I do if I experience a rash when taking Tarceva?

A. Soon after you start taking Tarceva, a rash may appear on your skin, most likely on your upper body or head. It may look like acne or dry skin. This is a common reaction to Tarceva. If you get a rash, do not stop taking Tarceva unless your doctor instructs you to do so. Try using a mild soap to wash areas affected by the rash, moisturize the area with a mild lotion and avoid sun exposure. Call your doctor if you are concerned about the rash. Your doctor may prescribe drugs to help the rash or dry skin. Please see Side Effects and Care for more information.

Q. How do I take Tarceva?

A. Tarceva is a pill taken by mouth once a day as prescribed by your doctor.

Please see How to Take Tarceva for more information.

Q. Where can I get Tarceva?

A. Your insurance plan may offer various options for coverage. Choose a pharmacy participating in your insurance or health plan to ensure your prescriptions are covered. For more information see Purchasing Tarceva.

Q. Where can I find insurance coverage information for Tarceva?

A. Patients will need to speak with their insurance provider to determine if Tarceva is covered. Each provider will respond differently. However, we anticipate that Medicare supplemental drug plans will provide coverage for Tarceva for non-small cell lung cancer. For more information about coverage for Tarceva, patients can visit www.spoconline.com.

Q. Can I get information on insurance coverage?

A. Patients taking Tarceva may use a free resource called Single Point of Contact (SPOC) to obtain insurance coverage information. SPOC will assist you in receiving the best possible coverage for Tarceva under your insurance plan. For more information on this resource visit spoconline.com.

Q. How long has Tarceva been available?

A. The Food and Drug Administration (FDA) approved Tarceva on November 18, 2004. For more information download the FDA Approval Letter.

Q. Are there other Tarceva clinical trials available for patients with NSCLC?

A. You can find information on additional clinical trials of Tarceva (erlotinib) by visiting ClinicalTrials.gov

[Linda661]

Summerflowers:

Ignoring the "prognosis" and making memories is exactly how I cope (as much as I can anyway).

RandyW gave you a lot of good info. on Tarceva. I have also been researching it to see if I can get my mom on it now. Studies also show that when Tarceva works, it tends to improve symptoms and quality of life for the patient as well ( www.mysan.de/article144714.html ).

www.tarceva.com is a website with bunches of good info. on Tarceva -- includes about everything RandyW gave you and more.

Linda

[cmrsm]

I am so sorry for what you are going through it is so hard. Prior to my father passing away two weeks ago, I traveled with him along with my mother and two infants (3 year old girl and 18 month old boy). Most recenlty we went to Florida in April. In addition, i had dinner with my father almost every night and would play cards with him on Sunday's. I think the most important thing was just being there with him and enjoying the little time we had together with my children. Take one day at a time and enjoy that day with your mother because you do not know what tomorrow will bring for either of you. I am struggling with the fact that we did not know that he was dying as opposed to you struggling with knowing it will happen, which is better? who knows, but either way it sure stinks and hurts. Just enjoy the time with her and let her know that you love her. When the end does come, know for them their pain and suffering is over and they are finally at peace.

My prayers and thoughts are with you in this very difficult time. Hold on to each day.