No More Doctors

[cathy]

I am not really sure how to start, what to do, where to go........Friday during our U of Mich visit, this is basically what the lung specialist said, they really dont want to try anything different for dads breathing because that could lead to his death....He is just to weak..He thinks the breathing problem is caused from the cancer, they really are just not sure, just when I thought I was starting to understand lc a little better, or even the pneumonitis... I dont know it just makes no sense...After the doctor gave us the news, he asked if we wanted a referral to the oncology center, well, dad looked at us and said "no more doctors." I talked to my mom today and asked her if dad really doesnt want to see any other doctors, she said he doesnt... I cant believe we have to sit around and wait for the cancer to take over...It hasnt gone anywhere yet..It is in the lymph nodes and I know thats not good... Can someone explain it to me, or lead me in the right direction. I would have asked the doctor but I had to get out of his office I felt really sick and just wanted to get home....... I thought it wasnt a death sentence if the cancer was in the lymph nodes....You know I cant believe how awful it is...I cant believe how many people I know who have suffered from cancer, and until my dad got sick I cant believe how I never had a clue how devasting it is...Here's another question How do I stand by and watch such a wonderful, kind gentle man suffer?

[natalie]

Cathy-

I'm so sorry to hear about your situation. I had no clue how quick and devastating my family/my life could change in an instant and how devastating this disease is. Is the doctor not warm or hopeful? Maybe your Dad would be open to a different doctor...one with hope, positivity and compassion. I'm on a mad hunt to find someone like that for my mom. I've heard lots of stories of people being told they had 6 months, 3 months to live and 3, 5, 10 years later are still here. It CAN be done. I don't advocate this since I'm new to this whole cancer thing but I just read the other day that Suzanne Somers beat cancer with alternative therapy. Maybe if your dad doesn't want to see doctors he would be open to try some alternative therapy. Don't give up hope. Don't give up on your Dad.

Please know that I'm thinking about you and will add you to my prayers. Take Care Cathy.

[Guest DaveG]

Cathy:

Here it is from the perspective of one who has it in the lymphatic system as well. I am a Stage IV, as the LC has spread, systemically to my lymphatic system, which means I have not only in my chest, but in the diaphragm, around my heart, groin, and neck. Had it been only one area of my lymphatic system, I would be Stage III like your Dad.

I know you live in Michigan, and it's not really that far, but I would like to recommend the U of Wisconsin Comprehensive Cancer Center for a second opinion. All of the lung cancer oncologists are under Dr. Schiller (I'm not sure whether she is taking on new patients). If you are interested, please email me and I will send you the contact information.

The staff at the UW Comprehensive Cancer Center are all, to a person, upbeat and very positive. Their philosophy is, the patient is in charge. When my wife and I told Dr. Schiller that we wanted to be together for our 50th Wedding Anniversary, in 18 years, Dr. Schiller, figuratively, "rolled up her sleeves" and said that we have much work ahead of us, and she asked for the first dance at the anniversary party.

I asked about the drugs, and the efficacy, and she just said that if one doesn't work, there are others.

The whole attitude of all the employees, clinical research assistants, nurses, and other staff members is very upbeat. They are always smiling and are quick with a quip.

Hope to hear from you soon. The most important thing is that there is always hope.

[john]

I am sorry Cathy. If your dad is ready for Hospice, you may want to ask him. It is supportive/compassionate place. If not there may be alternative treatments.

It is really hard staying on the sidelines. What does your dad want?

My mom was dehydrated at the end. I tried to get her gatorade, but she couldnt drink it.

It probably would have not mattered in her case too much, but any alternative treatments she would not try. she was rathered scared of them since the doctor said they are not FDA approved.

I wished she tried another trial. I talked to her about it and thought other ones would be better, but she really liked the hospital / doctor she had, so ultimately it was her choice.

I don't think if it is in the lymph nodes it is a death sentence or the worst. The lymph nodes are just used to stage the disease. Cancer can spread through the blood. If it gets to other organs then it is bad.

http://home.netcarrier.com/~rstevens/pagethre.html

I read somewhere that vitamin E may help with the fibrosis

Here is one reference - it is old though. I thought I saw one more recent

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

HANS-JOACHIM LEHMLER, PHD

University of Kentucky Medical Center, Lexington, KY

Research Grant

Cofunded by the American Lung Association and the ALA of Kentucky

New means for treating both infants and adults with respiratory distress syndrome (RDS) include liquid ventilation, in which the diseased lung is partially or totally filled with a perfluorocarbon liquid that transports oxygen into the lung and allows the patient to breathe. This method may also be useful in delivering drugs directly into the lungs by dissolving them in the liquid. Many drugs that are not soluble in perfluorocarbon liquid can be dissolved if they are chemically modified. These modified drugs, called prodrugs, are absorbed by lung tissue and converted back into their original form. Nicotinic acid, a drug that may be useful in preventing or treating lung cancer, tuberculosis and pulmonary fibrosis, is being studied to determine whether it can be converted into a prodrug, transported into lung tissue, and then used by the body. These experiments will provide insight into how such compounds can be used in the fight against lung disease.

[Ry]

Cathy, do you think you can talk him into just one more doctor? I think the referral to the lung cancer clinic was an excellent idea. That's all they do. Ask for Dr. Kalemkarian, he is the head of the lung cancer clinic at U of M. We were there for the 2nd opinion.

Best wishes to you and your dad.

[Debaroo]

Cathy, I am so sorry that this has happened. I agree with you that another opinion is in order, and Daves/Rys suggestion was a great one. My dad has extensive disease, both lungs, and spine, then mets to brain. He is currently on Iressa. He wasn't really up to more chemo, and really liked the idea that the Iressa is just a pill that is taken every day. Dads oncologist said that the Iressa has as much of a chance to work as chemo, and he believed it would help my dad. So far, so good. It has a 15% chance of "melting away the cancer" and a 25% chance of keeping things status quo, not allowing the cancer to spread. So a 40% overall chance of it working is NOT BAD AT ALL!! Have they considered IRessa for your dad. It has recently been approved by the FDA and should be easer to get now.

I wish you luck with your dad. Take care, Deb

[cathy]

Thanks Natalie,Katie,Dave,John,Ry, Deb...I appreciate all the information, thanks Dave for explaining the lymph node thing to me, I think my dad is probably at stage IV now because I remember the doctor saying it was all around his diaghram..I would love to bring him to Wisconsin, I am going to wait a couple days and talk to him about it again...Deb, his doctor did mention Iressa the last time we were there, but I think he is just to weak...He cant seem to gain any weight... I think if anything Iressa might be the way to go..Thanks everyone for your help and concern...........cathy

[renee]

Cathy, I'm sorry for the news.

My mom also doesn't want anymore doctors or treatment. She is just tired and she fought so hard. I don't blame her. Hell I'm tired and I didn't do anything. I can't imagine how hard it would be to live with this disease.

If your father truely doesn't want anymore doctors, I wouldn't push him. Just stand beside him, I'm sure you would no matter what, just let him know that you are there and you respect his decision. Mom told me that she wanted to quit along time ago, but just didn't have the nerve to tell me. Then she did it in a round about way. I think she felt like she was letting me down. She said that after all I had done to help her that she didn't want to hurt me by giving up. It did hurt, but I don't know what it's like to have cancer. I don't know what I would do if I had the disease myself.

I guess what I'm saying is, standing were I am now, I can see were you are. I understand the need to help and tell your dad don't give up, keep fighting, but..... let him do what he feels is best. You will be right there if and when he changes his mind.

God be with you Cathy. This is a terrible time and my heart breaks for you.

[kimblanchard]

Cathy,

My heart goes out to you and your family. The Iressa is worth giving a try since it involves only taking one pill a day. Please let us know what he decides.

Blessings to you both,

Peg