refusing chemo

lapittrice

Hi...
I'm a 74 year old woman, diagnosed with non small call lung cancer in Jan. I did 25 radiation treatments (not bad) and I will know Monday if surgery is possible. I feel as though I am the only person on the planet who will NEVER do the chemo. I'm much more frightened of the therapy than the disease. I can not accept 6 months of retching, baldness and all the other horrors, for the possibility of another year or two of life. I care about the quality not the quantity of my life. Fortunately my family (husband, sons, grandchildren) though they may disagree, totally respects that this is my choice, my life, my decision. Does anyone else feel this way, or am I alone?

VernB

Hi,
I am a 50 year old male diagnosed in February of non small cell lung cancer stage 4. Unfortunately surgery and radiation are not options for me. While I understand your concerns about the quality of life. I think you are somewhat in error over your possible chemo therapy. I am no expert by any means, just finishing my second round of very harsh chemo treatment (Taxol & Carboplatin). I have lost my hair yes, but all of the other side effects have been minimal and the doctors have given me drugs that have relieved most of them. Like they told me going in: with technology where it is today, the side effects from the disease are often worse than the side effects of the treatment. Whatever your choice, I wish you the best of luck!!!

gdpawel

Presently used chemotherapy drugs have a high rate of failure. This was brought out in a January 10, 2002, issue of the New England Journal of Medicine, when it was noted that 20 years of clinical trials using chemotherapy on advanced lung cancer have yielded survival improvement of only 2 months. It also pointed out that while new chemotherapy regimens appear to be improving survival, when these same regimens are tested on a wider range of cancer patients, the results have been disappointing. In other words, oncologists at a single institution may obtain a 40-50% response rate in a tightly controlled study, but when these same chemotherapy drugs are administered in a real world setting, the response rates decline to only 17-27%.

If that would be the case, knowing which chemotherapy agent "will" or "will not" work is essential.

Chemosensitivity Testing

One approach to individualizing patient therapy is chemosensitivity testing. Chemosensitivity assay is a laboratory test that determines how effective specific chemotherapy agents are against an individual patient's cancer cells. Often, results are obtained before the patient begins treatment. This kind of testing can assist in individualizing cancer therapy by providing information about the likely response of an individual patient's tumor to proposed therapy. Chemosensitivity testing may have utility at the time of initial therapy, and in instances of severe drug hypersensitivity, failed therapy, recurrent disease, and metastatic disease, by providing assistance in selecting optimal chemotherapy regimens.

All available chemosensitivity assays are able to report drug "resistance" information. Resistance implies that when a patient's cancer cells are exposed to a particular chemotherapy agent in the laboratory, the cancer cells will continue to live and grow. Some chemosensitivity assays also are able to report drug "sensitivity" information. Sensitivity implies that when a patient's cancer cells are treated with a particular chemotherapy agent in the laboratory, that agent will kill the cancer cells or inhibit their proliferation.

The goal of all chemosensitivity tests is to determine the response of a patient's cancer cells to proposed chemotherapy agents. Knowing which chemotherapy agents the patient's cancer cells are resistant to is important. Then, these options can be eliminated, thereby avoiding the toxicity of ineffective agents. In addition, some chemosensitivity assays predict tumor cell sensitivity, or which agent would be most effective. Choosing the most effective agent can help patients to avoid the physical, emotional, and financial costs of failed therapy and experience an increased quality of life.

Fresh samples of the patient's tumor from surgery or a biopsy are grown in test tubes and tested with various drugs. Drugs that are most effective in killing the cultured cells are recommended for treatment. Chemosensitivity testing does have predictive value, especially in predicting what "won't" work. Patients who have been through several chemotherapy regimens and are running out of options might want to consider chemosensitivity testing. It might help you find the best option or save you from fruitless additional treatment. Today, chemosensitivity testing has progressed to the point where it is 85% - 90% effective.

Listing of "Reputable" Labs USA:

These labs will provide you and your physician with in depth information and research on the testing they provide.

Analytical Biosystems, Inc., Providence, Rhode Island. Ken Blackman, PhD. Solid Tumors Only. 1-800-262-6520

Anticancer, Inc., San Diego, CA. Robert Hoffman, PhD. Solid Tumors Only. 1-619-654-2555

Oncotech, Inc., Irvine, CA. John Fruehauf, MD. Solid Tumors and Hematologics. 1-714-474-9262 / FAX 1-714-474-8147

Sylvester Cancer Institute, Miami, FL. Bernd-Uwe Sevin, MD. Solid Tumors Only. (especially GYN). 1-305-547-6875

Human Tumor Cloning Laboratory, San Antonio, TX. Daniel D. Von Hoff, MD. Solid Tumors Only. 1-210-677-3827

Rational Therapeutics Institute, Long Beach, CA. Robert A. Nagourney, MD Solid Tumors and Hematologics. 562-989-6455 http://www.rational-t.com/

Weisenthal Cancer Group, Huntington Beach, CA. Larry M. Weisenthal, MD, PhD. Solid Tumors and Hematologics. 1-714-894-0011 / FAX 1-714-893-3659 / e-mail: mail@weisenthal.org

One interesting note about Dr. Larry Weisenthal (Weisenthal Cancer Group). Someone very close to him had advanced ovarian cancer a few years ago. She underwent heroic debulking surgery (from pelvic floor to diaphragm) and tissue specimens were sent for chemosensitivity testing which showed resistance to single agent cisplatin and carboplatin and resistance to taxol. The three drug combination of vinorelbine, gemcitabin and high dose tamoxifen was very synergistic and tested sensitive. She was treated with 6 cycles of gemcitabine, carboplatin, vinorelbine and high dose tamoxifen with only minimal nausea and with no other toxicity. Her CA-125 normalized, her bowel symptomatology normalized and she gained back all of the 25 or so pounds which she had lost. She stated that she now feels better than she has in years and will undergo a second laparotomy sometime soon. This person "never" would have benefited with taxol/carboplatin.

I received an interesting email from Dr. Larry Weisenthal (Weisenthal Cancer Group) about a pharmaceutical company executive (a doctor) in Pennsylvania that had NSCLC (diagnosed stage IIIB or IV) and availed himself to Weisenthal's chemosensitivity testing.

By complete coincidence, the same week they tested this woman's specimen, they tested a non-small cell lung cancer specimen from this pharmaceutical company executive in Pennsylvania. By complete coincidence, the "in vitro best regimen" for this patient was quite similar to this woman, and he was treated with gemcitabine + carboplatin + vinorelbine + high dose tamoxifen + gefitinib (Iressa).

He completed 6 x 3 week cycles incorporating 2 doses per cycle with the exception of carboplatin which was administered only once per cycle. After two cycles the main mass in his lung had reduced 85% and lymph nodes were virtually undetectable. After 4 cycles the CT of his lung showed only a small residual mass which was not detected by PET. A small contrast in the MRI of his brain has remained unchanged throughout his treatment and is now thought to be unrelated to his cancer. He just had his first scan since completing the IV chemotherapy in October 2003 (He continues on Iressa at 250mg/day) and all appears unchanged and is still considered a Complete Response by his oncologist.

Without the screen he firmly believes he would have been placed on standard therapy (like taxol/carboplatin) which would not have been nearly as effective and, according to his oncologist, certainly would not have ever been treated with the combination that had shown activity in the screen.

This doctor-patient is certainly grateful for his second chance at life and has been contemplating ways that he can help to pay back for the gift he has been given. His oncologist at this leading cancer center, who now appears to be a firm convert to the benefits of this prescreening, has expressed an interest in being involved in conducting a clinical trial. He wants to help in any way he can in setting up such a trial using both his personal cancer experience as well as his professional background in pharmaceutical drug development.

He has been surprised and dismayed at the lack of basic knowledge of these tests. In a large institution such as the one he was at, where they must treat thousands of patients the nurses there had told him he was the only patient they had seen that had had these tests done! Even experienced oncologists seem to have only a rudimentary understanding of the assays, if they even happen to know of their existence. He is trying to think of ways that he can become an advocate to raise awareness of the assays in the medical community who are after all the most important group to educate on their use. Hopefully his involvement and phenomenal result can help in convincing some of the skeptics as to the benefit these tests can have.

acuozzo

I will keep you in my thoughts. I had squamus cell cancer on my left lung. I was stage 3. We did a pneumonectomy (removal of the entire lung), while I also had pneumonia. All things considered, it went pretty well. I have alot of restrictions now because I don't have the breath that I used to. Right after my lung cancer we discovered I also had ovarian cancer, stage 2B. I had a total abdominal hysterectomy. After this surgery I had 6 chemo treatments of taxol and cisplatinum. It wasn't easy, but for me it worked. I was cancer free for 2 1/2 years. I was 40 when I was first diagnosed. My cancer returned and attached on the head of my pancreas. We had to do a needle biopsy to be sure which cancer had returned. After discovering that it was the lung cancer, I had 6 treatments of taxatare and carboplatinum. These were not a severe as my first chemo, and for me they worked almost immediately. We saw a reduction of the tumor after just 1 treatment. Yes, I did lose my hair both times and I had a hard time with nausau.(?). I also lost alot of weight. Because of my family and my doctors, I was able to deal with it effectively. You have to be totally honest with yourself and your doctor. My mother-in-law had breat cancer years ago before the had all these treatments. She was cancer free for over 20 years. She started not feeling right, but not sick so she went to see her doctor. It turned out that her entire body was loaded with cancer and there was nothing they could do for her. This woman had more dignity than anyone I ever knew. She made the decision that she wanted to spend whatever time she had left with my husband and I, and her doctors and hospice were wonderful. While I wanted to scream at the world and do something, anything, I respected her decision and did ecerything I could to help her. She passed away with us at her side the way she wanted, in no pain and very peacefully. Her spirit is what kept me going all through my cancers. No one can tell you how to make the decision as to whether or not to have the treatment, it must be yours. I am glad that your family is staying by you. This is more important than anything. I wish you love. Anne Cuozzo

lapittrice

acuozzo said:

I will keep you in my thoughts. I had squamus cell cancer on my left lung. I was stage 3. We did a pneumonectomy (removal of the entire lung), while I also had pneumonia. All things considered, it went pretty well. I have alot of restrictions now because I don't have the breath that I used to. Right after my lung cancer we discovered I also had ovarian cancer, stage 2B. I had a total abdominal hysterectomy. After this surgery I had 6 chemo treatments of taxol and cisplatinum. It wasn't easy, but for me it worked. I was cancer free for 2 1/2 years. I was 40 when I was first diagnosed. My cancer returned and attached on the head of my pancreas. We had to do a needle biopsy to be sure which cancer had returned. After discovering that it was the lung cancer, I had 6 treatments of taxatare and carboplatinum. These were not a severe as my first chemo, and for me they worked almost immediately. We saw a reduction of the tumor after just 1 treatment. Yes, I did lose my hair both times and I had a hard time with nausau.(?). I also lost alot of weight. Because of my family and my doctors, I was able to deal with it effectively. You have to be totally honest with yourself and your doctor. My mother-in-law had breat cancer years ago before the had all these treatments. She was cancer free for over 20 years. She started not feeling right, but not sick so she went to see her doctor. It turned out that her entire body was loaded with cancer and there was nothing they could do for her. This woman had more dignity than anyone I ever knew. She made the decision that she wanted to spend whatever time she had left with my husband and I, and her doctors and hospice were wonderful. While I wanted to scream at the world and do something, anything, I respected her decision and did ecerything I could to help her. She passed away with us at her side the way she wanted, in no pain and very peacefully. Her spirit is what kept me going all through my cancers. No one can tell you how to make the decision as to whether or not to have the treatment, it must be yours. I am glad that your family is staying by you. This is more important than anything. I wish you love. Anne Cuozzo

Dear Anne,
Thank you so much for your response. As of yesterday the situation is different. The radiation has diminished the cancer to the size that my surgeon thinks that he can operate. It is a particularly serious and difficult surgery, but I'm game to try it. They will need to cut out part of the bronchial tube to remove the cancer and the upper lobe of the the lung, then resection the bronchial tube. There is also the possibility that they will need to remove the entire right lung. I expect that the recuperation
period may be rather long and difficult, but there
really is no other option. Either a surgery with a 50% chance, or waiting for the cancer to metastisize. Chemo isn't really an option, and further radiation would not appear to be useful.
I only hope that I'll be well enough to fly to Florida for my grandson's wedding May 30. :-)

Christinesan

Hi. Must say I disagree with Vern. I too had Taxol and Carbo, and the side effects for me were absolutely terrible. The pain was so bad in my muscles, bones, even my skin hurt beyond imagination. My hands and feet went totally numb, and I could hardly walk. The numbness remains ten months later, and my short term memory is all but gone too. I wish I only took radiation (had 4 1/2 mos. chemo along with 2 mos. radiation). No more chemo for me ... no matter what! Hang in there. xxoo

lostwithoutmom

No I am with you , I lost my mom 15 months ago. She was only 58. I did not like her wishes, but I did what she wanted. We meaning the health love you and don't want to let go., but truth of the matter is how healthy are we? May god bless you, and your wishes