Am I doing enough

[libby Saks]

Hi

My husband is starting taxol/carbo Monday after a failed Tarceva trial. I just feel there must be so much more I can be doing for him. Should I be looking into alternative therapies at the same time. Should we try and do nutritional supplements, reikki, all those other things I read about. He is so weak and tired and has no energy for researching and evaluating (unusual for him). I feel so responsible for all his care and want to make sure we try anything that might work. How do you decide where to put your energy.

Libby

[Guest Danny Guest]

Has radiadion been suggested Yet. I was diagnosed 4/2/02 with nsclc adenocarcinoma with a 2.5cm in rt lung and 2.5 cm adjacent lymph node

stage 3B. I underwent 33 radiation treatments, along with taxol/carbo only 1 month after a failed thorocotomy. Yes I became very weak, tired but continued working during this period. I continued to shave my face every morning eventhough all hair was gone from my body. The taxol/carbo didn't work, radiadion slowed the growth but left me with pneumonitis, about 4 months later. Its been 13 months now and I'm currently on Gemzar/Navelbine 11 treatments so far and it seems to be working. I will never give up fighting this awfut disease and neither should you nor your husband. You will find answers to probably all your questions on this board along with many many sincere friends and supporters.

[Ry]

Well it sounds like you have been doing reading on alternatives and researching and that's good. I'm curious why he went right to a trial instead of trying the tradional chemo/radiation first. Usually the trial is after other things have failed. I would ask about radiation along with the chemo and question the doctor as to his treatment plan.

As to what you can do, certainly supplements and vitamins will help build his system up to withstand the chemo. You can also make sure you read up on diet and make lots of healthy meals with fresh vegetables especially broccoli and spinach. Best wishes to both of you.

[KatieB]

The one thing that seems to be universal with all L/C types is the fatigue. My dad has been extremely fatigued and low energry for about 7 months. He feels a bit better when blood counts are stable and certainly better in between treatments, but having zero energy is pretty normal.

What's imporatant is a positive attitute, goals and feeling important. Also be sure to keep dehydration, blood counts and depression in check. As family memebers/caregivers it will become our jobs to advocate, research and fight on behalf of our loved ones. It's time to be strong so that the one we loves can get strong. Will be praying for you both!

[Estelleanna]

I was in bad shape! on oxygen 24/7 stage 4 NSCLC by the time I was DX.

The Dr suggested just putting me on a hospice program. Dr. told my husband I had about 3 mo. left. After much questioning the Dr. deceided to put me on taxol & carbo to give me quailty to my remaining amout of time on this earth.

After the first treatment I notice a big Change in myself & how I felt. They did a cat scan after 2 treatments & the Drs couldn't BELEIVE the differance between the 1st cat scan & the one they just took! The cancer that was in right lung gone! the tunmor in lymth nodes between the lungs was 2.4cm

reduced down to 1.3 cm. The tumor in my left lung went from 2.8 to 2.4cm The cancer in my lymth nodes around the wais area gone!!!!!!

I had lost a lot of weight. but have gained it all back! PLUSSSSS

So don't let Drs discourage you!!!!! I am hoping that the Chemo treatments HELP your hubby like it did me!!!!!

DON"T GIVE UP HOPE!!!!!! Hope IS THE BEST MEDICINE!!!!!!

((((HUGS)))))

Estelle

[JudyB]

Libby, I agree with Ry: Why did the dr. put your husband into a trial before other treatments? Are you at a Cancer Ctr, with Oncologists that are experienced w/LC? Remember, if your husband's doctors are not acceptable to you two, SWITCH DOCTORS! You want oncologists who are up to date. There are way too many cases where the treating physician was just out of his league, and his patient couldn't survive his lack of knowledge. Now, I'm not saying this is the case with your husband's doctor—I'm just wondering.

You will hear repeatedly, if you haven't already, that THE MOST IMPORTANT STEP a cancer patient must take is deciding which doctor will be treating him. Read Lance Armstrong's book (It's Not About the Bike). A cancer patient has to take charge and be agressive in getting what he needs. Cancer survivors are not the most pliable, compliant patients. No! They are the fighters!

Remember the power of positive thinking can change your world! JudyB

[Guest DaveG]

Iam new to the Stage IV process as well. I was an 18 month Stage I survivor and, following two surgeries was cancer free. On April 1, at a sugery follow-up, a CT Scan was done and it was discovered that I have hot lymph nodes in my chest, both left and right. The surgeon said that I was no longer a surgical candidate. I was instructed to go back to my Oncologist, Dr. Joan Schiller at the U of Wisc Comprehensive Cancer Center. On Wednesday April 16, a PET Scan was performed which showed multiple lymphatic tumors throughout much of my lymphatic system. The original plan was to do a medialsteinal scope and biopsy the tumors in my chest, but instead, since several lymph nodes in the left side of my neck were showing cancer, a needle biopsy was done on those nodes instead. Following the biopsy, Dr. Schiller reviewed to possibilities with my wife and I, whcih included Lymphoma, massive infection, or worst case scenario, Lung Cancer mets. A follow-up appointment was made for Friday April 18, at which time Dr Schiller would give us the results of the biopsy. When she escorted us into the exam room, placed 3 chairs in a circle, and then said we aere going to discuss the biopsy results, I knew then that we were facing the worst case scenario. Dr. Schiller then told us that the biopsy, in fact, showed Lung Cancer Mets and that she had restaged me to Stage IV NSCLC because of the systemic nature of the mets.

On Monday, May 5, I start in Corboplatin/Taxel and on Tuesday I start in a clinical trial with a drug called ABT-510. The chemo meds are intended to shrink the tumors and the clinical trial drug is intended to diminish the blood flow to the tumors.

No one, absolutely no one, wants to be given the diagnosis your husband and I have been given. To me, my choice is very simple, take the chemo and clinical trail, and give myself HOPE, or take nothing, and give myself absolutely nothing. I believe very highly that if there is a means, and there is will to go along with that means, then I will go for it. As Dr. Schiller very aptly put it, the cancer cannot be cured, BUT it sure can be brought under control and can be kept under control. My wife and I want 18 years, as that is when we will celebrate our 50th Wedding Anniversary. When we told that to Dr. Schiller, she then asked for the first dance at our 50th Wedding Anniversary party. My wife simply said that if Dr. Schiller gets us that far, she MOST CERTAINLY will have the first dance with me.

I had a bad day on the golf course, not because of the way I was playing, as I was playing very well. As we got into the latter holes, 15 through 16, I ran out of energy. I got so fatiguedd that I could hardly swing a golf club. I started getting down, but my golf buddies wouldn't have any of that and immediately started working on raising my spirits. They said that they didn't care what i shot, they just wanted me to finish and would not accept any quitting on my part. They made me play out, they made me realize that one can reach way down inside themselves and find that which they need to make it from one day to the next. They are so correct.

Quitting is the easy way out. Trying to find that courage, or strength, to get you through something, is the most rewarding way. I was glad to have stuck it out. I came home, laid down, took a short nap, and now I am ready to do things, although my golf and physical activities are done for the day. So here I am, trying to write nice things on the greatest Lung Cancer Message Board in the world.

[libby Saks]

Thank you all for your suggestions and support. You are truely an incredible bunch. In answer to why my husband started Tarceva first, before standard chemo. It was our choice. He is being treated at Dana Farber Cancer Center in Boston. They were doing a clinical trial on Tarceva as a first line treatment. We could not do it after standard chemo and we thought it was worth the shot since it had worked well for a small number of people. We realized after 5 weeks he would not be one of that small number and so we are starting Taxol/Carbo on Monday. We are not sorry that we tried Tarceva since we would have always wondered about if it had worked. We hope the 5 week delay will not make a difference in how he responds to the chemo. We like and trust our oncology team but feel that we should take responsibilty for checking out everything we can. We were told he is not a candidate for radiation. He has multiple tumors in both lungs. Can anyone recommend any books on nutrition or vitamins during chemo. Any suggestions on what to eat? Again thank you all.

Libby

[teresag]

Hi Libby, It never fails to amaze me how people who are doing research, providing support, driving a spouse to appointments, making nutritious palatable meals, etc., etc., still ask "Am I doing enough?" You are! Take the advice offered here, do your best (as you undoubtedly already are) and don't beat yourself up! You are not omniscient, and neither is anyone else giving care to a person with cancer. Everyone's doing their best - including you!

As far as complementary therapy, I highly recommend massage, reiki, or acupuncture; whatever comforts your husband. Massage, in particular, can enhance sleep, and that is good for healing. But if he is ingesting anything (herbs, for example) be certain to notify all his physicians. Good luck!

[Jenny G.]

Hi,

I have not personally read this book, but it was recommended to me and I plan to get it. Would like to hear from anyone who has read it.

Beating Cancer With Nutrition (newly revised edition) by Patrick Quillin (a widely acclaimed nutritionist with Cancer Treatment Centers of America). This book gives therapies that can be used in addition to conventional means (chemo and radiation).

Jenny

[AdaW]

Dear Libby,

This book has lots of good information in it including a chapter on nutrition:

The Chemotherapy and Radiation Therapy Survival Guide by Judith McKay, R.N., O.C.N. and Nancee Hirano, R.N., M.S., A.O.C.N.

ISBN 1-57224-070-9.

Ada

[Guest Marta1]

Hi Libby,

I am sorry to hear about your husbands diagnosis...but remember the single most important thing that you should be doing is keeping the HOPE ALIVE... but I'm sure you already have that part down by now!!!

I'm glad to hear that your husband is being treated at Dana Farber...its one of the best around..Who is your oncologist? The reason is that I work at Dana Farber/Brigham and Women's Hospital doing clinical trials...

Anyway...I'm convinced of the presence of the deep mind/body connection in all of us...and in my opinion...things like massage (look into Craniosacral therapy..it is a form of massage that does not use a lot of physical pressure) can only be a help...

I am a firm believer in the importance of mediation and yoga as well...it may help to buy a book on Hatha yoga..it is quiet and provides the body with simple ways to create peace in your life...even if you just practice deep breathing for a few minutes a day..your husband may notice a difference!!

Good luck

Laura

[Carleen]

Libby,

Welcome to the board, sorry to hear about your husband. I think it sounds like you are doing a great job for your husband. It's hard to know what to be doing and when, and as a caregiver, there is also such a strong sense of helplessness. I am always feeling like I am not doing enough, like I should be doing more. Heck, if I could, I'd want to be in a lab helping to find a cure. But at the same time, I'd want to be home spending all my time with my husband, making him comfortable and happy. I've learned that the best I can do is to take each day, one day at a time, be there for whatever his needs are at the time, and keep looking on sites like this of any additional insight.

As far as things to try, and nutritional information, there are so many good books out there. The oncology department we go to has an on staff nutritionist that is available to discuss diet and suppliments with us. You may want to check your hospital to see if they have one. We were told that a minimum would be to just eat a well balanced diet, which means 5 fruits and vegetables a day, lean meats, whole grain breads and cereals, and dairy products. And WATER, WATER, WATER. It is surprising how far off the normal diet is from fulfilling what we are actually suppose to be eating and drinking daily. My husband is taking vitamin supplements from a company called Mannatech, I think they have a web site, but we were referred by someone who took them during their chemotherapy and they helped them keep up energy and their immune system. However, there are dozens of supplement packages out there, and I am sure most of them are very good. But before you take anything make sure to clear it with your oncologist. There are some vitamins that can actually inhibit the body from absorbing the full benefit of chemo, so even though it is a good vitamin, depending on your chemo drug it could be a bad combo. Check everything with a doctor first.

Other than that, we were given a few peices of advice from a nurse on how to help some of the nausea with chemo. Apparantly foods that are spicy, high in fat, or contain refined sugars, are the hardest for the body to digest, so therefore are more apt to cause nausea after chemo. Dairy can also be hard to digest for some people, so the day of chemo and the day after, you might want to go light on the lactic acid/Dairy products. We were told that protein actually is very soothing to the stomach so try and eat lean meats, peanut butter, and fish.

Well, I hope that helps some,

I wish you the best, and you will both be in my prayers.

Carleen

[Guest]

LIbby,

I am so sorry to hear about your husband. The best advice I can give you is to never give up hope!!!! I am adding your husband and your family to my prayers.

[Deanna M.]

That's me who wrote the post above, forgot to sign in.