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Stage IV recurrence/chemo not working

als26
Posts: 48
Joined: Feb 2002

My mother is undergoing chemo treatement for a recurrence. Has anyone with Stage IV cancer (with a recurrence) experienced multiple chemo failures? If so, what did you do? Did you try biological therapies, angiogensis therapies, etc..? How long have you been fighting the recurrence?

Thank you.
ALS26

mirtle
Posts: 32
Joined: Mar 2003

ALS, I'm still out here fighting. Its been almost two years. I just had another taxol/carbo. This may be the last one of these. My CA125 is climbing slowly. I am told that there are many, many things out there that they can try. How old is your mom and does she have any compromising conditions? It seems the healthier you are, the more they are able to try. If it weren't for the cancer, I would be a pretty healthy individual. I know that sounds kind of funny but it is true. My own mother was 80 when she was diagnosed. She only lived for about 8 months and during that time she had radiation that was nearly fatal. My brother had lung cancer and he was able to live a good quality of life for over a year and a half after he was diagnosed. That was 1996. A lot depends on your overall health. Please let me know how you and your mom are doing. I am saying a prayer for both of you right now!! Best wishes from me to your mom -- fight on!!

als26
Posts: 48
Joined: Feb 2002

Hi-
My mom is 51. She recently had surgery for a bowl obstruction. She now has an ileostomy (like a colostomy) and her nephrostomy bags ( for her urine. The doctor said the tumors are pushing against the organs that would usually function normally. She's in good spirits and believes that with prayer and hopefully with some chemo assistance, that she'll be ok. It's amazing, if you saw her, you wouldn't know she was sick. She's just really tired. I hope and pray that this is true. I really appreciate that you responded to my note. It's nice to find people that are faced with the same hopes and fears. My friends can't understand what I'm going through. Talk to you soon.
Take Care :)

gdpawel's picture
gdpawel
Posts: 549
Joined: May 2001

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.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Although I am such an amateur compared to you, Greg, I totally agree.

Remember Jayne Armstrong? She made it over 8 years and after her first long remission, she didn't have great results from chemo, but multiple surgeries kept her alive and with a very good QOL.

A member of my local support group (which I no longer support, but that's another story) died after 13 years, not from OC, but from the cumulative effects of many, many chemo rounds, punctuated by short remissions. Kathy responded well to everything they threw at her cancer, but after her first (12 month) remission, she never achieved NED again for more than 6 months, and usually less.

My great-aunt Anna had a double mastectomy at the Mayo Clinic back in the 1940's for breast cancer. No chemo, no radiation. She lived another 35 years and died at age 88 without ever experiencing a recurrence. Her surgery was pretty primitive by today's standards, and VERY aggressive and disfiguring, but by golly, it worked.

I wish doctors would re-think their current position on second look surgeries. I have heard from a lot of women who had no symptoms, but the surgery revealed visible, operable cancer. My doctor does not do second look surgeries any more. He is a convert to the wait-for-symptoms school of thought. I had NO symptoms until I was Stage IIIc.

I recently had laproscopic hernia repair surgery and asked my gyn/onc surgeon to take a look, too. I figured while they were scoping out my abdomen, it couldn't hurt. They didn't see anything, and when I mentioned this to Dr Sabbatini at MSK, he said eyeballing the abdomen was a much better method of detecting new cancer than a CT scan.

Just my shiny dime's worth.

Carlene

zulma
Posts: 8
Joined: May 2003

hi, alas26,
although my mom has not had a recurrence and was a stage iiic, she complemented her chemo treatments with alternative medicine. we think it made a real difference. if you can, please visit this site for more info on the products my mom used, and still uses! hope this helps. stay strong! www.letstalkhealth.com

ConnieM
Posts: 9
Joined: Jan 2004

Dear ALS26:
I was curious to find out, how after several months have passed, your mom is doing?
I have Stage IIID recurrent ovarian cancer and have been at it since 1999. The last round of Taxol which I took from January through May 2003 did not work, so I ws faced with a similar decision. I took a break from chemo over the summer, trying to recuperate and get my immune system back up to a fighting stance. Then in October 2003 my tumormakers had gone up to 720 and I had to decide what to do. I opted against regular chemo and instead decided to go an alternative route. After 3 months of treatments my tumormarkers are now below 20! If you are interested, please give a call to Dr. Stephen Edelson in Atlanta at 404 841-0088. He has helped many cancer patients!
ConnieM
I hope your mom is doing well!!!

edt36
Posts: 3
Joined: Oct 2011

als26,

I don't know you and you don't know me but I feel so connected with you. My mother also has recurence stage IV colon cancer and unwent bowl obstruction surgery in July of this year. I must say friends and family don't really understands the pain and fear you experience on a daily basics. Its consume my daily thoughts but I think God for every second, minute, hour, and day He allows us to share with each other. My fear runs so deep and to read your post was touching, to see it in writing that someone knows exactly how you feel.

My mother is 56, she took her 5th treatment on Tuesday and goes back in two more weeks for her 6th treatment. After that she will have another PET Scan done to see if the cancer has spreaded. I am so scared of with the test may show until its hurts.

However my mother is in good spirit, but I think that's b/c she don't want us to worry. Somethime she says she is ok but I know when she is in pain. We don't allow her to talk to the doctors alone b/c she won't tell us the truth about what they told her. She told us Tuesday that her Onologist said she is in great health (yea right).

I could go on and on, I'm so glad to run across your post. I will be praying for you, your mother and family. Stay in touch!

God Bless You

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

edt36

I see you are new here and I am sorry for what you are going thru--you have replied to a posting that is over 8 years old. I don't know if that member is still on the discussion board. The date of each posting is at the top of the page so take that into consideration if you don't get response from als26.

I think it is important to embrace all the health that your mother has even though she has stage IV cancer. I have been dealing with late stage ovarian cancer for over a year and am still not in remission. However, apart from that problem, I consider myself to be in good health.

I am about the same age as your mother, and if my daughter had your attitude about my health, I would want to hide information from her, too. I know it is hard for you and I am sorry you can't be more positive for your mother's sake.

edt36
Posts: 3
Joined: Oct 2011

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's picture
carolenk
Posts: 909
Joined: Feb 2011

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.

Radioactive34's picture
Radioactive34
Posts: 387
Joined: May 2011

Carolenk very well said... :) edt36, We are here...prayers

edt36
Posts: 3
Joined: Oct 2011

Hi MS. Carolenk, just read over your last post again and besided to write. I'm trying not to worry to much these days, if you could believe that. My mom had a great weekend and so did I. She was feeling really great, she drove around Sat. by herself, I think she enjoyed that alot.

I myself got out and shopped with a friend and didn't worry about my mom. My friend and I went to the outlets mall which is 40 minutes away. I haven't gone that far from my mom since July when we discovered that the cancer was back.

I didn't realize I didn't worry about her until Sunday. I almost felt guilty for enjoying myself but prayer works. Yesterday was the first time I shared with anyone about my mom cancer and I felt better telling my friend. I only had one request, that my friend promise not to feel sorry for me.

Well, tomorrow is the 6th chemo treatment and then we go to have another PET Scan completed. So please say a prayer for my mom and my family.

Thanks to you and all whom takes the time out to read my posts. I welcome any and all feed back.

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