Stage IV recurrence/chemo not working

gdpawel said:

My wife and I had the medical adage that since most of surgical oncology is curative (62%), we wanted to fight her cancers with surgery. Each and every one gave her more life to live. In cases of cancer being in stage I or II, success rates border over 93%. All of the surgeons that were involved in her cancer fight over the years were our heroes. I've received numerous emails about my wife's cancer story from patients and their loved ones who have fought cancer with surgery alone (so Ann and I arn't alone with this idea). Lung cancer, breast cancer, colon cancer, brain tumors to name a few. I have a few personal friends who too, have gone with surgery alone (they are still here). Their life was extended not because of chemotherapy or radiation therapy but because of great, competent surgical care.

Touted as the best-selling cancer drug in history, Taxol began 41 years ago this past summer. Taxol was found to be virtually insoluble in water. "It had the solubility of a brick". The compound wouldn't dissolve very much in any solution. Without a way to get it into a cancer patient, what good was it? It was discovered that something Taxol would dissolve in that "might" work in a reasonably "safe" intravenous solution in humans. It was an elixir made of castor oil and marketed as Cremophor EL. It was the "only" answer. However, this castor-oil carrier is "suspected" as the culprit behind the misery which includes nausea, vomiting, joint pain, appetite loss, brittle hair and tingling sensations in hands and feet (neuropathy). The much ballyhooed drug was no panacea.

And the picture wasn't all that rosy as a cancer-fighter. Numerous cancer patients had the drug bounce off their tumors, doing little if any good. Of course, no one knew if it was hundreds, thousands, tens of thousands or millions of patients. A lot of cancer patients who succumb, get the wrong information on their death certificates. Death by "side effects of cancer treatment" is not the same as "complications of cancer". Cancer patients die with incorrect, incomplete or misleading diagnoses. Often it will say they died of heart failure, kidney failure, liver failure or lung failure, etc. These can be side effects of cancer treatment as well as progression of the cancer. They are neatly lumped together, reducing the general understanding of the impact of cancer.

The percentage of patients that must respond to a drug before it is approved varies from as high as 80% to as low as 20%. Thereafter, it is used routinely for all patients with the same form of cancer, though unfortunately a drug that helps one person does not necessarily mean it will help all patients with the same diagnosis. God forbid you have a medical oncologist that believes in the one drug(s) fits all patients. And the response rate for Taxol.....30%. Imagine if a patient knew beforehand that Taxol had only a 30% response rate, would that patient take the drug? This is all part of the "informed consent".

I have only to convey my own experience with my wife's dreaded fight with cancer. It depends on the individual, each maybe different (maybe not). The side effects of some drugs, especially high-dose, multi-drug regimens can be punishing. In some studies, up to two-thirds of patients had life-threatening toxicity and some died toxic deaths from the treatment itself (it does happen). The side effects of the chemo drugs (taxol/carboplatin) that my wife received were brachycardia (drop in heart rate) & low blood pressure, Necrotizing Leukoencephalopathy (an early delayed reaction affecting the white matter - connective tissue of the brain), Neuropathy (damage to one or more of the nerve groups of the nervous system) and (according to the scientists at Brookhaven National Laboratory) lowering the central nervous system's resistance to future radiation treatments (platin drugs).

It has not been shown that platinum-based combination therapy is superior to single agent alkylator therapy. No substantial benefit has been found in giving ovarian cancer patients this therapy. Clinicians have found that the toxic effects of this treatment can cause a lower quality of life for these patients. Plus, the late stage of recurrent ovarian cancer makes the combination chemotherapy of Taxol & Carboplatin drug resistent to cancer cells and suppresses the immune system, making it possible new tumors to grow because the patient has been rendered unable to resist them.

I've always felt the way my wife was treated for her ovarian cancer back in 1972 was the reason she survived so long. Her type of treatment sounds very similar to the Angiogenesis & Low Dose Chemotherapy treatment that is finding increasing acceptance in cancer centers today. Her postoperative chemotherapy drug was among the slowest acting and least toxic of the alkylating agents. Depression of the immune system is slow and reversible, allowing it to regenerate and contribute to healing. The lower-dose regimen was meant to attack the blood vessels that feed the tumor. Tumors create their own supply lines by secreting substances that stimulate the formation of new blood vessels and researchers suspect that frequent low doses of certain drugs may disrupt the growth of those new vessels, starving the tumor (she also may have had some of her own anti-angiogenesis predisposition).

It is especially important to study low-dose therapies because they are being used increasingly in clinics. Doses, timing and combinations all need to be worked out. Doctors need to find out whether the treatments can make patients live longer and whether tumors will eventually outsmart the drugs and find ways to survive even without angiogenesis.

In my correspondence with the Vice President of Global Development & Clinical Design & Evaluation Oncology, Bristol-Myers Squibb (maker of Taxol/Carboplatin), and I totally agreed with him, "low-dose" Carboplatin (taken orally) may have had the same mechanism that affects tumor cells, like Chlorambucil (Leukeran). However, if you understand the politics of the Chemotherapy Drug Concession, the medical oncologists at our local home town hospital, believed in the "one drug(s) fits all patients".

Cancer doctors have the financial incentive to select certain forms of chemotherapy over others because they receive higher reimbursement. Typically, doctors give patients prescriptions for drugs that are then filled at pharmacies. But Medical Oncologists buy the chemotherapy drugs themselves, often at prices discounted by drug manufacturers trying to sell more of their products and then administer them intravenously to patients in their offices. The practice creates a potential conflict of interest for these doctors, who must help cancer patients decide whether to undergo chemotherapy or not or to continue if it is not proving to be effective and which drugs to use.

The effectiveness of some chemotherapy regimens is limited because when cancer is detected in its late stages most patients develop resistance to chemotherapy drugs. Virtually all cancers contain cells resistant to chemotherapy and the number of drug-resistant cells increases exponentially as a tumor expands in size. Cancer that progresses during treatment or recur within six months of treatment are considered "refractory". After treatment is completed, the surviving drug-resistant cells often proliferate rapidly and metastasize. As a result, very few cancer patients survive five years after their diagnosis. Since dose intense chemotherapy can suppress the immune system, it is possible that new tumors are allowed to grow because the patient has been rendered unable to resist them.

The body's immune system attacks and eliminates not only bacteria and other foreign substances but also cancer cells. Cancer cells are not foreign to the body but their biological function has been altered in that it doesn't respond to the body's normal mechanisms for controlling cell growth and reproduction. The abnormal cells can continue to grow, resulting in cancer. Much of the body's protection against cancer is carried out directly by cells of the immune system rather than by antibodies circulating in the bloodstream. A malfunctioning immune system can fail to stop the growth of cancer cells.

Some cancers do not respond well to chemo or radiation. The chance of curing it is probably less than 10%, according to clinical investigators at the National Cancer Institute. That is why most medical oncologists and radiation oncologists refer to "remission", and not "cure". The response rate is another favorite of oncologists. If a dying patient's condition changes even for a week or a month (like shrinkage), the patient is listed as having "responded to" chemotherapy. The fact that the tumor comes back stronger soon after chemotherapy is stopped, is not figured into the equation.

Survival rates immediately following complicated cancer surgery or chemotherapy are two to three times higher at facilities that perform a high volume of these procedures (real cancer center, not local home town hospitals). Cancer patients needing such treatments therefore should be served in more-experienced settings, says the National Cancer Policy Board of the Institute of Medicine and National Research Council in its report Ensuring Quality Cancer Care.

I have a very good friend who had colon surgery in 1995 (the year before my wife's chest surgery) with 12 lymph nodes resected (an advanced colon cancer). He did not have either chemotherapy nor radiation therapy (although the same medical & radiation oncologists that snookered my wife and I, tried to give it to him). He is 76 years of age and still fit as a fiddle. Cancer patients are never out of the woods with their disease but he feels he made the right decision for him.

One of my neighbors where I live, who watched me tend to my wife for ten months before her death, had breast cancer last year. She didn't even want to burden me with the knowledge that she had cancer. I eventually found out. She had estrogen receptive breast cancer and choosed (after knowing what my wife went through with chemo and radiation) to have a masectomy with no "cancer cell killing" chemotherapy and/or radiation. She is taking tamoxifen only. I educated her about the long term effects of tamoxifen, as long as she has the knowledge. She can decide later, what she wants to do about it.

Early last year, I lost one of my aunts to the side effects of breast cancer treatment. Her daughters allowed her to have a lumpectomy with concomitant chemotherapy and whole chest radiation. However, she was seventy-nine years of age, and to a seventy-nine year old, it is like hammering nails on her coffin. Her death was from terminal infections that invade the body after the persons immune system is destroyed by chemo/radiation. Breast cancer is a common type of cancer called Adenocarcinoma. Adenocarcinoma is a type of cancer which does not respond well to chemo or radiation.

My mother's room-mate at her nursing home had aggressive breast cancer in 1979, at the age of 56. She had a total masectomy and no chemotherapy or radiation treatments. Today, although in a nursing home for Parkinsons disease, she is still alive and relatively well at 80 years of age.

A close family friend (one of my brother's sister-in-law) had ovarian cancer and endometrial cancer over twenty years ago. She had two surgeries but no chemotherpy or radiation treatments. Today, except for struggling with reumetoid arthritis, she is still alive and relatively well at 68 years of age.

Some people would have you believe that because their bodies didn't give out after receiving chemotherapy or radiation that these treatments are "o.k.". Sometimes it is good for the soul to hear what others in similar circumstances have to say.

edt36 said:

Welcome to the discussion board
Thanks alot Ms. Carolenk, after posting to the discussion I realize how old als26 post was. I just connect with her post. I don't mean to sound ungreatful or not positive about my mom health, not at all.

A little background about myself. I am the oldest(36) of my brother and sister. I handle all of my mother person and private affairs, but please don't miss understand we all help and give 100% in our own way. With me, I over worry b/c I know exactly whats going on and tries to protect everyone eles. I just don't won't them to feel the pain I feel, so this discussion board is what I use to share my real pain.

We are a very close family and they think I'm the strong one but little do they know how much pain I feel and hide. I am sorry if I came off as not being positive about my mother's health, she is MY BEST MOTHER in the WORLD.

carolenk said:

Yes, edt36, I know you are
Yes, edt36, I know you are a worrier, and that might be why your mom wants to protect you from being hurt by not telling you everything. My mother is almost 80 & says she doesn't worry about me. Whether that is true or not, I find it comforting--I DON'T want people to worry about me.

This discussion board is a good place for support AND somehow, you have to find a way not to worry so much. Keep reminding yourself about all the health your mom still has. Even though cancer is scary, it is possible to live with cancer for many, many years.

May God bless you & your family with the strength to carry on.

ancastanescu said:

ovarian cancer

How are you Connie? Are you still fighting cancer? My mom also has recurrent ovarian cancer and it's hard with chemotherapy.

Hello - Just for the record - when I click on Connie's name, I see that she has not posted for 8 years. 

About ConnieM

Joined on

Wednesday, January 28 2004

Last online

Saturday, August 09 2008...........................So I suggest you post any questions or remarks you wish to make on a "separate topic line".  Since it seems that many do not ever check to see when the person "last posted" they often expect a reply which they most likely will never get.  Personally, I was not posting on this topic during the time she was online.

Many ladies here are battling recurrences, and yes, chemotherapy is really hard both on the psyche and the physical body.  We are all VERY TIRED!  So I hope that whatever your mom's stage that the chemo she is taking will serve to "knock it back" into remission.

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

P.S.  Chemocare.com is a very good site to review for anyone taking chemo.  Any drug that your mother is taking will be listed there.