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Recurrent Ovarian Cancer under 6 mos with bloating etc. and elevated CA125
My first time here. Frustrated and confused. My mom was diagnosed with ovarian Cancer stage 3B last March. Had everything could see removed. had full hysterectomy. Chemo with Taxol and Carboplatinum finished in August. Symptoms of bloating, abdominal discomfort and feels urgent need to urinate all the time started again in November and . Her surgeon is also her oncologist, which I think has been a huge disservice to her. He answers with yes or no answers. NO explanation. No support emotionally of any kind. Rarely returns her calls. Her stomach symptoms are worsening by the day. he told her over 2 weeks ago it was definitely back and very strong. CA-125 has gone up steadily...is now 44 (Also, one of the main reasons she kept him as her dr. is because he had access to a clinical trial that he had told her she would definitely want to do IF it did recur, called A6. Now, he apparently does not have access to this anymore and is talking about Doxil. Does anyone know if this a death sentence since it came back so soon (she is only 62 years old)? Does anyone know of good clinical trials for someone with platinum sensitive cancer recurring in less than 6 months, with the LEAST side effects ? There are so many treatments out there, but they all sound awful. Looking for a clinical trial IN THE DENVER AREA that won't make her so sick she can't enjoy her life. Also, NONE of the drs want to tell us her prognosis and I don't believe that they don't know. They must have SOME idea. Does she have a year to live, 6 months, or 6 weeks?? This seems very bad from everythi
Patients with recurrent ovarian cancer, it is often difficult to select an effective treatment because the tumor develops resistance to many drugs. Currently, physicians select a drug and must wait about six months to see whether it is effective on a particular patient. For many cancers, especially after a relapse or when a particular treatment is ineffective, more than one standard treatment exists.
All the rigorous clinical trials that have been identified are the "best" treatments for the "average" patient. This has been referred to as the lowest common denominator theory of cancer treatment. But cancer is not an "average" disease. Cancer is far more heterogeneous in response to various individual drugs than are bacterial infections.
The heterogeneity of human cancer is shown both by the fact that some patients derive great benefit from treatments which fail to help (and often harm) the majority of patients who receive the treatment. And many patients fail to benefit from 1st line chemotherapy, only to derive great benefit from 2nd or even 3rd line chemotherapy. These patients should have received the correct treatment the first time around. The earlier in the course of the disease that the most active treatment is given, the better the result for the patient.
Assay-testing is based on a biological principle that when a drug is effective, it will induce apoptosis (cell death) in the cancer cell. If the cancer cell is resistant to a drug, apoptosis will not occur. Assay-testing for apoptosis will determine whether a drug kills the tumor. Chemosensitivity assay-testing can take the guesswork out of cancer treatment. Patients with refractory cancer and have very limited time left, six months can feel like an eternity when they may have to start a whole new course of treatment if the original treatment proves ineffective.
The cell culture assay tests provide much more powerful prognostic information. They tell you that a given form of treatment has an above average probability of being associated with a clinical response and/or with being associated with above average survival. Likewise, they indicate that given treatment is associated with a below average probability of response and/or survival.
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.
Assay-tests could be performed from ovarian cancer cells in pleural fluid (fluid from the cavity that surrounds the lungs) which is evidence of Stage IV ovarian cancer, or from Ascites (an abnormal accumulation of fluid in the abdomen), and of course lymph nodes. The labs will provide you and your physician with in depth information and research on the testing they provide.
By investing a little time on the phone speaking with the lab directors, you should have enough knowledge to present the concept to the patient's own physician. At that point, the best thing is to ask the physician, as a courtesy to the patient, to speak on the phone with the director of the laboratory in which you are interested, so that everyone (patient, physician, and laboratory director) understand what is being considered, what is the rationale, and what are the data which support what is being considered.
For more information about assay-testing: http://www.positivehealth.com/test/articles.asp?i=1832
All the rigorous clinical trials that have been identified are the "best" treatments for the "average" patient. This has been referred to as the lowest common denominator theory of cancer treatment. But cancer is not an "average" disease. Cancer is far more heterogeneous in response to various individual drugs than are bacterial infections.
The heterogeneity of human cancer is shown both by the fact that some patients derive great benefit from treatments which fail to help (and often harm) the majority of patients who receive the treatment. And many patients fail to benefit from 1st line chemotherapy, only to derive great benefit from 2nd or even 3rd line chemotherapy. These patients should have received the correct treatment the first time around. The earlier in the course of the disease that the most active treatment is given, the better the result for the patient.
Assay-testing is based on a biological principle that when a drug is effective, it will induce apoptosis (cell death) in the cancer cell. If the cancer cell is resistant to a drug, apoptosis will not occur. Assay-testing for apoptosis will determine whether a drug kills the tumor. Chemosensitivity assay-testing can take the guesswork out of cancer treatment. Patients with refractory cancer and have very limited time left, six months can feel like an eternity when they may have to start a whole new course of treatment if the original treatment proves ineffective.
The cell culture assay tests provide much more powerful prognostic information. They tell you that a given form of treatment has an above average probability of being associated with a clinical response and/or with being associated with above average survival. Likewise, they indicate that given treatment is associated with a below average probability of response and/or survival.
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.
Assay-tests could be performed from ovarian cancer cells in pleural fluid (fluid from the cavity that surrounds the lungs) which is evidence of Stage IV ovarian cancer, or from Ascites (an abnormal accumulation of fluid in the abdomen), and of course lymph nodes. The labs will provide you and your physician with in depth information and research on the testing they provide.
By investing a little time on the phone speaking with the lab directors, you should have enough knowledge to present the concept to the patient's own physician. At that point, the best thing is to ask the physician, as a courtesy to the patient, to speak on the phone with the director of the laboratory in which you are interested, so that everyone (patient, physician, and laboratory director) understand what is being considered, what is the rationale, and what are the data which support what is being considered.
For more information about assay-testing: http://www.positivehealth.com/test/articles.asp?i=1832
Thanks to all of you for your thoughtful responses. I appreciate it so much, and I've forwarded them on to my mom.
My Dr. was also surgeon and Oncologist also. I have recently had my first reoccurence and changed infusion centers to be closer to home so now I have a new Oncologist. The differnce between having him as that only is night and day! Not that the gyno/onc was bad, he is still my gyno, but the attention I am receiving from my new Oncolgist is superior. I feel very fortunate. He seems to be able to inform and fight symptons of chemo much better and is very alert to my case. I hope that things go better for you and hang in there !
Hello kelbell - first of all I'm a relapsed ovca patient too (65) so have some idea how she feels (and you) although mine took just over 6 months to come back. I was stage 3c/4 when diagnosed and also had surgery and chemo taxol/carbo like your mum. I'm not sure you shouldn't look for a different consultant set up - seeing both a gynae/onco and a consultant oncologist who specialises in gynae cases would be better I think. I can't help you with the Denver area as I live in the UK, I'm sorry to say.
Her CA125 of 44 is still very low really - mine is in excess of 145 and not regarded as too bad by my consultant - a professor in a big London teaching hospital. Has she had a CT scan yet - that usually tells them what is really going on? They don't put total reliance on the CA125 score in my experience. They do take a lot of notice of how the patient is feeling and description of their symptoms, so your mother's do sound as if she is relapsing. I'm not a doctor however! I think different people have different responses to the return of the cancer ie how their symptoms and general health are affected, so don't assume the worst. Did she respond well to the first chemo course she had - the taxol/carbo - rapid drop in the CA125 etc? From my understanding they wouldn't put her back on that combination given the short period since the last one. Hence the suggestion of the Doxil.
As to her future prognosis, it does seem to depend entirely on the individual, and how they respond to 2nd line treatment - many do quite well on Doxil sometimes combined with other chemo. It's true to say the response rate is lower than for Taxol/carbo but it's important to believe you will be one of the 'responders'. There are also other chemo drugs they can try so it's not as bad as it first seems.
I hope you get good info from other people about finding other specialists in your area who are more positive - good luck. If you have any further questions do let me know and I'll do my best as I am certain others will. I may be umpteen thousand miles away but we are all in the same boat and aiming to be around as long as possible!
Her CA125 of 44 is still very low really - mine is in excess of 145 and not regarded as too bad by my consultant - a professor in a big London teaching hospital. Has she had a CT scan yet - that usually tells them what is really going on? They don't put total reliance on the CA125 score in my experience. They do take a lot of notice of how the patient is feeling and description of their symptoms, so your mother's do sound as if she is relapsing. I'm not a doctor however! I think different people have different responses to the return of the cancer ie how their symptoms and general health are affected, so don't assume the worst. Did she respond well to the first chemo course she had - the taxol/carbo - rapid drop in the CA125 etc? From my understanding they wouldn't put her back on that combination given the short period since the last one. Hence the suggestion of the Doxil.
As to her future prognosis, it does seem to depend entirely on the individual, and how they respond to 2nd line treatment - many do quite well on Doxil sometimes combined with other chemo. It's true to say the response rate is lower than for Taxol/carbo but it's important to believe you will be one of the 'responders'. There are also other chemo drugs they can try so it's not as bad as it first seems.
I hope you get good info from other people about finding other specialists in your area who are more positive - good luck. If you have any further questions do let me know and I'll do my best as I am certain others will. I may be umpteen thousand miles away but we are all in the same boat and aiming to be around as long as possible!
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