Stage 4 Ovarian Cancer Treatment options and Survivors
Hi,
My Mother was diagnosed with Stage 4 Ovarian Cancer with metastatis and spread in Abdomen. Underwent her second chemo.
Want to understand if there are any alternate therapies which have been tried in parallel with conventional treatment. Do's and Don'ts in terms of deight and foods.
How to minimize the side effects of Chemo and prepare the patient for surgery emotionally and physically.
Want to learn from the journey of survivors.
Regards,
Jagjit
Comments
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Jagjit-Long"tutorial"+personal remarks re Stage IV OC 4 your mom
Dear “Jagjit”
We generally say “Welcome”, but we really mean, “Oh my soul, not another one here with a similar diagnosis as ours!” And yet, what better place to go than to a “veteran’s group” where we are all in different stages of remission or progression. And so I say “Welcome” as in “you’ve come to a good place to share stories of other likeminded ladies” who would like to help. For the sake of others who wish to comment, I will share your mother’s diagnosis here, and they may have helpful commentary:
Diagnosis Summary: Metabolically Active Disease involving both ovaries with gross ascites, peritoneal and omental deposits, lymph nodal (right highest mediastinal/cervical level VII, supradiaphragmatic and Abdominal) metastases and minimal left side pleural effusion.
Before I begin, I need to tell you that this letter cannot be digested in one sitting. Moreover, it will take a long time to read, so I suggest you print it out, and take your time in reading it. I am writing from the standpoint, that this cancer is new to you, and that you need to know more, as do I. Thus it is extremely lengthy, and has taken quite a bit of time to compose. My intentions are to have you become more familiar with how Stage IV Ovarian cancer patients with metastases are treated.
Now just a note—you mentioned “DIET”. Allow me to say that I’m not a good one to ask, because just yesterday I had my “Uber” driver, my husband, to stop by the Krispy Kreme donut shop. There I ordered a dozen donuts consisting of glazed and jelly-filled delights. And before the night was through I had managed to “limit” myself to only half a dozen. No doubt there are others here who are nauseous and only wish they could eat anything they want, so diet is different at different stages of disease. What I can eat now, I may not be able to eat later, so I will enjoy it while I can.
I can’t stress enough the importance of having a regular hydration after each treatment. I also had a Neulasta injection the following day as well. This kept my white blood cell count up. I say, “None of us should have to beg for water!” Dehydration is a culprit that will zap Mom of the little bit of energy she does have.
Fortunately for me, thus far, I have a good appetite and no restrictions on foods or liquids. That is to say, except for dark green vegetables because the Vitamin K in them negates the effect of the “Warfarin” regimen that I am on, because I do have Deep Vein Thrombosis (DVT) in both lower legs. So I will be on an anti-coagulant regimen for the rest of my days. That’s the only thing I can’t eat. Now once, I was nauseous for a couple of days after I had a shot of Neupogen to restore my white blood cell count quickly. My body didn’t respond well to that. I had a very bad response to that and had to go to the ER for pain relief. It also left me nauseous with no appetite for two days, so I told my oncologist to “mark that one off the list.” So now after each chemo treatment, I return the day after for some steroids, hydration and an injection of Neulasta.
If your mom’s white blood count drops too low, she may well have to forego the planned treatment for that day. So she should avoid crowds and not allow people to come for a visit if they are harboring any kind of contagious germs. Personally, I carry some hand sanitizer in our auto, and also in my purse. Thinking of how many things we touch that have also been touched by hundreds of others, one can’t be too careful. A study once found that grocery cart handles in Walmart Stores harbored some of the greatest amounts of germs. I’m happy to carry my own pen when I sign in at the doctor’s offices. Just think of how many people have picked up that same pen and who knows what kind of sickness they have? So I think this falls under the heading of “Be sure to wash your hands often.” At my doctor’s office at UPMC, the sign read, “If your physician doesn’t wash his hands, please ask them to do so.” So I am germ conscious.
As far as my own personal story goes, shall I say “Fools rush in where angels fear to tread”, and so I stepped right into Stage IV from the beginning. It appears that this may be the same situation for your mother. As for me, not a hint of pain or nausea in the beginning—just a small “lump” in the lower left part of my abdomen just below the waist. And so being the “self-diagnosing layman that I am”, I surmised that I might have a hernia, since I had already had one before. A trip to my GP seemed to conclude that it may well be a hernia, and arranged an appointment with a surgeon.
A week or so later, I experienced some cramping and groin pain. I had already promised a dear friend that I indeed would go to the ER if I felt that pain again. And so, instead of waiting for the appointment with the surgeon, I did my housework on a Tuesday, and “checked in” to the ER waiting room, and I do mean ‘WAITING ROOM!” When my turn came, they asked, “Why are you here?” I said, “I think I have a hernia.” With that they began to check me over and conducted a CT scan. Well, in a couple of hours, my self-diagnosed hernia was spelled “PERITONEAL CARCINOMATOSIS!” WHAT? ? ? I asked the doctor to show me a picture of the scan, which he did. He pointed out lots of floating tumors within the Peritoneal fluid of my abdomen.
And like you, I am sure, this began a search to learn the meaning of Peritoneum, Omentum, etc. Now I was familiar with medical terms analogous to Esophageal cancer, but now I was learning about parts of my own body which I never doubt existed but didn’t know the meaning of those words. Everyone that has read my “about me” page knows that my husband is now into his 14th year of remission for Esophageal Cancer, Stage III (T3N1M0). So I still believe in the ability of the Lord to perform miracles because my husband has certainly been given a reprieve. The stats for survival of that cancer are dismal. I say all that to say this. It really did not “shock” me in the sense that I couldn’t believe I had cancer. I just had not heard of this type of cancer. But, I did believe it immediately and accepted it as well.
Having lived with an invalid sister during my growing-up years who was diagnosed with Breast Cancer in her 50’s, but ultimately died with Pneumonic Aspiration—and having my husband diagnosed with cancer—and my dear brother dying with Mesothelioma, and several close relatives to dying as well. Some with Pancreatic cancer, Lung Cancer, and some with Stomach cancer, so why should I think I was immune. Being a realist, I began to research these new words, and found “nothing to write home about!”
Now you’ve got to understand that I’m going to be frank but yet hopefully compassionate in the way I write. My first thoughts though were, “What is this cancer all about? Will I die from it?” So I began to research information on the web from “reputable sources”. I’m not one into alternative procedures, I will leave that to others here. I went the conventional route.
My first calls were to a Dr. Sugarbaker in Washington who had been using a new procedure with his cancer patients. He was using Cytoreductive Surgery (CRS) in conjunction with HIPEC treatments. And I will give you some references below my name so that you can research this further. Now understand that your mother and I have Stage IV Ovarian cancer. So far there has been no cure found for this stage, but hopefully there are procedures that can “slow the progression of this cancer” with some accompanying quality of life. I already knew that from just reading about Peritoneal Carcinomatosis.
The hospital kept me there for 2 days for observation. During that time I did a great deal of research. I called Dr. Sugarbaker’s office while I was still in the hospital, and told them of my diagnosis. They told me that they didn’t like to perform this procedure on women over 60, “but I could send them my records.” Well, being 74 at the time, I was not in a “wait-and-see” frame of mind, I decided against going that route. Moreover, they didn’t have any family houses for out-of-town patients, and that was something we needed.
So I called and talked to Dr. James D. Luketich, my husband’s surgeon who had performed a laparoscopic Esophagectomy on my husband. I asked Dr. Luketich’s advice based on my diagnosis. He said, “Send me all your records and copies of any discs you have.” I did that immediately, and within 3 weeks, I was in Pittsburgh at the University of Pittsburgh Medical Center having exploratory surgery performed by a Dr. David Bartlett. So between the doctors, “DAVID” and “JAMES” I was comfortable being there. Dr. Luketich had personally consulted with Dr. Bartlett, and explained my case. The first procedure there was to have a PET scan. From there it progressed to not only having tumors in my abdominal fluid, but also in my ovaries as well. And so since treatments are often the same for both Peritoneal Cancer and Ovarian Cancer, I was instructed to return home and undergo chemotherapy treatments of Carboplatin and Paclitaxel (Taxol). Afterwards, I would return to UPMC for re-evaluation. Thank God the tumors had been reduced to an operable size, and I underwent Cytoreductive Surgery on July 1, 2013. Now this surgery was never meant to be curative in nature but was to remove other “non-essential” organs to which the cancer could spread.
So in my case since I had previously had a partial hysterectomy at age 36 in which only the Uterus had been removed, I still possessed my ovaries and fallopian tubes. Had my gynecologist known then, what we know now, that Ovarian cancer probably starts in the fallopian tubes, he would have removed everything. But like the old saying goes, “If a frog had wings, he wouldn’t bump his tail!” And so my cancer could have well begun in my fallopian tubes, but we will never know. So at this point, it doesn’t matter which was the primary source, I now have Ovarian Cancer that has metastasized to the Peritoneum or vice versa. It’s now a moot point, except to know that it is definitely Stage IV.
So in a nutshell the size of a walnut, my story is that after diagnosis in November of 2012, I have had Pre-op chemo and Cytoreductive Surgery in 2013.
Then in 2014 I had 3 tumors that spread to the Caudate Lobe of my liver. Targeted radiation to that area by Cyberknife radicated them completely.
Then in June of 2015, I began to have symptoms of Intestinal blockage and began a second regimen of Carbo/Taxol treatments for 6 sessions (each one 3 weeks apart.) That regimen reduced the size of my existing tumors and no new ones were found—sot that was actually a good report.
Now I will say that my first chemo treatment in 2013 left me extremely fatigued, to the point of not being able to walk very far, and when going to the doctor’s office, my husband pushed me in a wheelchair. I did not have any nausea, but I felt like I had been “wrung out like a wet mop!” My hair began to loosen with each brush stroke, and I wound up having my head shaved. So the second time around, I just went to the beauty shop and before all my hair fell out, I said, “Just give me a buzz cut.” After all, it is just hair and it will grow back. So if that’s our biggest loss, we are winners all!
In addition, I had some “left-over neuropathy” from the first chemo regimen in 2013 that is still with me. Still again, I’m still really enjoying a good quality of life for a Stage IV. So for us Stage IVs, it is always a question of “where will it spread to next?” I never had the luxury of having Stage III or under, but for them I know it is the same looming question. How can I keep this cancer at bay? What treatments have proven to be successful in holding the cancer back?
As far as CA125 counts some ladies have a very high count and some do not. My count was never above 300. It came down to 8 in December of 2015, but is now rapidly increasing and has reached 272 presently. Now my doctor cautions me to not read too much into this number. And so, I won’t, even though I know it means an increase when it is always only UP. Now I did have another CT scan to check my progress last week, and this Thursday, I will know the results of that.
As yet, I have had no ascites. And I have not had any lung involvement YET, but have had some stinging sensations periodically in my upper left chest area, so that is why I my oncologist ordered a CHEST, ABDOMEN & PELVIS CT (w/contrast). So this Thursday, I will know more about that.
Now as for other portions of Mom’s diagnosis, I had to look up the meaning. I took the liberty of sharing her complete diagnosis with others here in the first part of this letter. To understand the problems that surface on this site, as well as what’s going on in my own body, I often have to spend time searching the web to understand the problem more fully. Not being a doctor, or a nurse, I find the web is very helpful to me to understand what the terms mean. I hope Mom isn’t too depressed to quiz the doctor and ask lots of questions. I find that the more I understand what’s going on inside my body, the more accepting I am of it, since I think one of the best ways to combat this cancer is to “own” it, and then find out all I can about it. Now that doesn’t make it go away—it just gives me the comfort of knowing that I’m not neglecting to ask the right questions and trying to stay abreast of the treatments that are available.
Now I will tell you as for Stage IV with metastasis options are limited. However, I was able to have Cytoreductive Surgery to remove some “non-essential organs” to which the cancer would most likely spread since they were also in the abdominal cavity. Now naturally my ovaries were removed, but so were my fallopian tubes, spleen, gallbladder, omentum and parts of my intestines. I believe that is what has prolonged my life and presently I am enjoying a good quality of life. I do wish I could be of more help to you, but it is evident that your mother and I have similar problems, but dissimilar as far as the progression of our cancer at this time.
So far it seems that the traditional treatment is all that I have had—that being Carboplatin and Paclitaxel (Taxol), and Cytoreductive Surgery (CRS) that seems to be helpful to many women with our diagnosis. The targeted radiation of 3 tumors in the Caudate lobe of my liver comes under the category of metastasis. The tumors were successfully killed by “Cyberknife” treatment here locally.
Your mother was diagnosed in November of 2015, so now she is 7 months out from that date. I’m wondering if this is her first regimen of chemotherapy and exactly what has transpired since her diagnosis. Has any kind of surgery been mentioned as an option? Has the HIPEC method of chemotherapy been mentioned? That’s a heated intraperitoneal chemotherapy that is sometimes given to the patient as a part of the Cytoreductive Surgery. My surgeon ruled it out for me but going into the surgery, it was mentioned as a possibility. So I’m just thinking of things that women with Ovarian Cancer have had in the “treatment category.”
And while my surgery was never intended to be curative, it was intended to hopefully give me some extra time and quality of life. And I must say that with Peritoneal Carcinomatosis alone, I could have died shortly after diagnosis and I certainly didn’t know I would be alive this long. One of the references below is a bit shocking. Many women my age aren’t even given the option of Cytoreductive surgery, and some Stage III/IV women aren’t even treated. So finding the best hospitals and the best surgeons is vital. I credit my survival to date to the kinds of treatment that I’ve been given. So I’m grateful for the quality of life I’ve had, even with the awful chemotherapy that we all have to endure.
It’s a familiar saying, “You gotta’ go through the rain, if you want to see the rainbow.” Along with that saying is another meaningful one: “Life isn’t about waiting for the storm to pass—it’s about learning how to dance in the rain.”
Wishing for your mom many rainbows along the way!
Loretta
Peritoneal Carcinomatosis/Ovarian Cancer Stage IV
References and definitions that hopefully you will find as instructive as I did when trying to understand your mom’s diagnosis better.
1. http://csn.cancer.org/node/301646 - Recently a fella signed in under the “Peritoneal Cancer site” as “Brian from the North”. His mother was about to undergo her first chemo treatment and wanted to know how he could best help his mother with her chemotherapy treatments. So I shared with him things that were helpful for me during my chemotherapy treatments.
2. http://www.medicalnewstoday.com/releases/310709.php
“ONE IN 5 WOMEN WITH OVARIAN CANCER DOES NOT UNDERGO SURGERY, PENN STUDY REVEALS - Published: Thursday 2 June 2016RE
“Results show survival benefit of surgery for patients regardless of age or advanced disease, and point to barriers to cancer care delivery.
Nearly 20 percent of women with ovarian cancer do not undergo surgery, despite it being a standard part of treatment recommendations, according to new research from the Perelman School of Medicine at the University of Pennsylvania. The findings, which suggest women may live four times longer with surgical treatment, were especially striking among older patients; researchers found that nearly half of women over 75 with stage III/IV cancer do not have surgery and roughly 25 percent receive no treatment at all. The study is published this month in the journal Gynecologic Oncology…”
3. http://www.sciencedirect.com/science/article/pii/S0090825816301585
“Non-surgical management of ovarian cancer: Prevalence and implications…Highlights
18% of EOC patients in the NCDB did not receive surgical treatment.
22% of elderly patients with advanced disease received only systemic treatment;
23% were untreated. It is unclear how often deviation from best-practices guidelines is clinically appropriate…”
4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4324539/
“…Published online 2015 Feb 4. - New perspectives on targeted therapy in ovarian cancer
5. http://chemocare.com/chemotherapy/drug-info/carboplatin.aspx
Carboplatin - usage & side effects
6. http://chemocare.com/chemotherapy/drug-info/Paclitaxel.aspx
Paclitaxel (Taxol) Info
7. http://www.surgicaloncology.com/pc.htm
Sugarbaker Oncology Associates - Specialty Section for the Treatment of Peritoneal Carcinomatosis from Colorectal and Ovarian Cancer
8. http://www.merckmanuals.com/home/lung-and-airway-disorders/pleural-and-mediastinal-disorders/mediastinal-masses
“…Mediastinal masses include tumors, fluid-filled sacs (cysts), and other abnormalities in the organs of the mediastinum. These organs include the heart, the thymus gland, some lymph nodes, and parts of the esophagus, aorta, thyroid, and parathyroid glands…”
9. http://www.merckmanuals.com/home/lung-and-airway-disorders/pleural-and-mediastinal-disorders/overview-of-pleural-and-mediastinal-disorders
“…The pleura is a thin, transparent, two-layered membrane that covers the lungs and also lines the inside of the chest wall. The layer that covers the lungs lies in close contact with the layer that lines the chest wall. Between the two thin flexible layers is a small amount of fluid that lubricates them as they slide smoothly over one another with each breath. The area containing the fluid is called the pleural space…”
10. http://www.laparoscopic.md/digestion/omentum
“The omentum is a membranous double layer of fatty tissue that covers and supports the intestines and organs in the lower abdominal area. The omentum is made up of the greater omentum which is an important storage for fat deposits and the lesser omentum which connects the stomach and intestines to the liver…”
11. http://www.merckmanuals.com/home/lung-and-airway-disorders/pleural-and-mediastinal-disorders/pleural-effusion
“…Pleural effusion is the abnormal accumulation of fluid in the pleural space (the area between the two layers of the thin membrane that covers the lungs…Normally, only a thin layer of fluid separates the two layers of the pleura. An excessive amount of fluid may accumulate for many reasons, including heart failure, cirrhosis, pneumonia, and cancer…”
(My comment: Now as for “pleural effusion”, I did have a substantial amount of fluid drawn during my hospitalization, but haven’t had a problem since then.)
12. http://medical-dictionary.thefreedictionary.com/supradiaphragmatic
“supradiaphragmatic - [soo″prah-di″ah-frag-mat´ik] - above the diaphragm.”
13. http://www.cancer.org/cancer/ovariancancer/detailedguide/ovarian-cancer-treating-by-stage
“Treatment of invasive epithelial ovarian cancers, by stage
The first step in treating most stages of ovarian cancer is surgery to remove and stage the cancer. Debulking is also done as needed (see the section about surgery for details)…”
_______________________End of references__________________
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Professionals
Jsingh11
I incorporated a number of integrative treatments while I was undergoing chemo. And I am a huge advocate of this approach. Although my doctor told me chemo wasn't going to address the cancer and my debulking surgery was suboptimal, my treatments were successful and I have been NED for 6 years. But honestly, it isn't something you should try to do yourself. You wouldn't install a new engine in your car yourself, so you certainly ought not to try treating your mother's cancer or her side effects yourself. There are a lot of powerful options out there, but they are specific to each patient, and doing the wrong thing can interfere with her treatments. I suggest you find a naturopath familiar with oncology patients, an integrative oncologist or an Anthroposophical medicine doctor familiar with oncology.
Best of luck to you.
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Thank you Loretta Marshall!LorettaMarshall said:Jagjit-Long"tutorial"+personal remarks re Stage IV OC 4 your mom
Dear “Jagjit”
We generally say “Welcome”, but we really mean, “Oh my soul, not another one here with a similar diagnosis as ours!” And yet, what better place to go than to a “veteran’s group” where we are all in different stages of remission or progression. And so I say “Welcome” as in “you’ve come to a good place to share stories of other likeminded ladies” who would like to help. For the sake of others who wish to comment, I will share your mother’s diagnosis here, and they may have helpful commentary:
Diagnosis Summary: Metabolically Active Disease involving both ovaries with gross ascites, peritoneal and omental deposits, lymph nodal (right highest mediastinal/cervical level VII, supradiaphragmatic and Abdominal) metastases and minimal left side pleural effusion.
Before I begin, I need to tell you that this letter cannot be digested in one sitting. Moreover, it will take a long time to read, so I suggest you print it out, and take your time in reading it. I am writing from the standpoint, that this cancer is new to you, and that you need to know more, as do I. Thus it is extremely lengthy, and has taken quite a bit of time to compose. My intentions are to have you become more familiar with how Stage IV Ovarian cancer patients with metastases are treated.
Now just a note—you mentioned “DIET”. Allow me to say that I’m not a good one to ask, because just yesterday I had my “Uber” driver, my husband, to stop by the Krispy Kreme donut shop. There I ordered a dozen donuts consisting of glazed and jelly-filled delights. And before the night was through I had managed to “limit” myself to only half a dozen. No doubt there are others here who are nauseous and only wish they could eat anything they want, so diet is different at different stages of disease. What I can eat now, I may not be able to eat later, so I will enjoy it while I can.
I can’t stress enough the importance of having a regular hydration after each treatment. I also had a Neulasta injection the following day as well. This kept my white blood cell count up. I say, “None of us should have to beg for water!” Dehydration is a culprit that will zap Mom of the little bit of energy she does have.
Fortunately for me, thus far, I have a good appetite and no restrictions on foods or liquids. That is to say, except for dark green vegetables because the Vitamin K in them negates the effect of the “Warfarin” regimen that I am on, because I do have Deep Vein Thrombosis (DVT) in both lower legs. So I will be on an anti-coagulant regimen for the rest of my days. That’s the only thing I can’t eat. Now once, I was nauseous for a couple of days after I had a shot of Neupogen to restore my white blood cell count quickly. My body didn’t respond well to that. I had a very bad response to that and had to go to the ER for pain relief. It also left me nauseous with no appetite for two days, so I told my oncologist to “mark that one off the list.” So now after each chemo treatment, I return the day after for some steroids, hydration and an injection of Neulasta.
If your mom’s white blood count drops too low, she may well have to forego the planned treatment for that day. So she should avoid crowds and not allow people to come for a visit if they are harboring any kind of contagious germs. Personally, I carry some hand sanitizer in our auto, and also in my purse. Thinking of how many things we touch that have also been touched by hundreds of others, one can’t be too careful. A study once found that grocery cart handles in Walmart Stores harbored some of the greatest amounts of germs. I’m happy to carry my own pen when I sign in at the doctor’s offices. Just think of how many people have picked up that same pen and who knows what kind of sickness they have? So I think this falls under the heading of “Be sure to wash your hands often.” At my doctor’s office at UPMC, the sign read, “If your physician doesn’t wash his hands, please ask them to do so.” So I am germ conscious.
As far as my own personal story goes, shall I say “Fools rush in where angels fear to tread”, and so I stepped right into Stage IV from the beginning. It appears that this may be the same situation for your mother. As for me, not a hint of pain or nausea in the beginning—just a small “lump” in the lower left part of my abdomen just below the waist. And so being the “self-diagnosing layman that I am”, I surmised that I might have a hernia, since I had already had one before. A trip to my GP seemed to conclude that it may well be a hernia, and arranged an appointment with a surgeon.
A week or so later, I experienced some cramping and groin pain. I had already promised a dear friend that I indeed would go to the ER if I felt that pain again. And so, instead of waiting for the appointment with the surgeon, I did my housework on a Tuesday, and “checked in” to the ER waiting room, and I do mean ‘WAITING ROOM!” When my turn came, they asked, “Why are you here?” I said, “I think I have a hernia.” With that they began to check me over and conducted a CT scan. Well, in a couple of hours, my self-diagnosed hernia was spelled “PERITONEAL CARCINOMATOSIS!” WHAT? ? ? I asked the doctor to show me a picture of the scan, which he did. He pointed out lots of floating tumors within the Peritoneal fluid of my abdomen.
And like you, I am sure, this began a search to learn the meaning of Peritoneum, Omentum, etc. Now I was familiar with medical terms analogous to Esophageal cancer, but now I was learning about parts of my own body which I never doubt existed but didn’t know the meaning of those words. Everyone that has read my “about me” page knows that my husband is now into his 14th year of remission for Esophageal Cancer, Stage III (T3N1M0). So I still believe in the ability of the Lord to perform miracles because my husband has certainly been given a reprieve. The stats for survival of that cancer are dismal. I say all that to say this. It really did not “shock” me in the sense that I couldn’t believe I had cancer. I just had not heard of this type of cancer. But, I did believe it immediately and accepted it as well.
Having lived with an invalid sister during my growing-up years who was diagnosed with Breast Cancer in her 50’s, but ultimately died with Pneumonic Aspiration—and having my husband diagnosed with cancer—and my dear brother dying with Mesothelioma, and several close relatives to dying as well. Some with Pancreatic cancer, Lung Cancer, and some with Stomach cancer, so why should I think I was immune. Being a realist, I began to research these new words, and found “nothing to write home about!”
Now you’ve got to understand that I’m going to be frank but yet hopefully compassionate in the way I write. My first thoughts though were, “What is this cancer all about? Will I die from it?” So I began to research information on the web from “reputable sources”. I’m not one into alternative procedures, I will leave that to others here. I went the conventional route.
My first calls were to a Dr. Sugarbaker in Washington who had been using a new procedure with his cancer patients. He was using Cytoreductive Surgery (CRS) in conjunction with HIPEC treatments. And I will give you some references below my name so that you can research this further. Now understand that your mother and I have Stage IV Ovarian cancer. So far there has been no cure found for this stage, but hopefully there are procedures that can “slow the progression of this cancer” with some accompanying quality of life. I already knew that from just reading about Peritoneal Carcinomatosis.
The hospital kept me there for 2 days for observation. During that time I did a great deal of research. I called Dr. Sugarbaker’s office while I was still in the hospital, and told them of my diagnosis. They told me that they didn’t like to perform this procedure on women over 60, “but I could send them my records.” Well, being 74 at the time, I was not in a “wait-and-see” frame of mind, I decided against going that route. Moreover, they didn’t have any family houses for out-of-town patients, and that was something we needed.
So I called and talked to Dr. James D. Luketich, my husband’s surgeon who had performed a laparoscopic Esophagectomy on my husband. I asked Dr. Luketich’s advice based on my diagnosis. He said, “Send me all your records and copies of any discs you have.” I did that immediately, and within 3 weeks, I was in Pittsburgh at the University of Pittsburgh Medical Center having exploratory surgery performed by a Dr. David Bartlett. So between the doctors, “DAVID” and “JAMES” I was comfortable being there. Dr. Luketich had personally consulted with Dr. Bartlett, and explained my case. The first procedure there was to have a PET scan. From there it progressed to not only having tumors in my abdominal fluid, but also in my ovaries as well. And so since treatments are often the same for both Peritoneal Cancer and Ovarian Cancer, I was instructed to return home and undergo chemotherapy treatments of Carboplatin and Paclitaxel (Taxol). Afterwards, I would return to UPMC for re-evaluation. Thank God the tumors had been reduced to an operable size, and I underwent Cytoreductive Surgery on July 1, 2013. Now this surgery was never meant to be curative in nature but was to remove other “non-essential” organs to which the cancer could spread.
So in my case since I had previously had a partial hysterectomy at age 36 in which only the Uterus had been removed, I still possessed my ovaries and fallopian tubes. Had my gynecologist known then, what we know now, that Ovarian cancer probably starts in the fallopian tubes, he would have removed everything. But like the old saying goes, “If a frog had wings, he wouldn’t bump his tail!” And so my cancer could have well begun in my fallopian tubes, but we will never know. So at this point, it doesn’t matter which was the primary source, I now have Ovarian Cancer that has metastasized to the Peritoneum or vice versa. It’s now a moot point, except to know that it is definitely Stage IV.
So in a nutshell the size of a walnut, my story is that after diagnosis in November of 2012, I have had Pre-op chemo and Cytoreductive Surgery in 2013.
Then in 2014 I had 3 tumors that spread to the Caudate Lobe of my liver. Targeted radiation to that area by Cyberknife radicated them completely.
Then in June of 2015, I began to have symptoms of Intestinal blockage and began a second regimen of Carbo/Taxol treatments for 6 sessions (each one 3 weeks apart.) That regimen reduced the size of my existing tumors and no new ones were found—sot that was actually a good report.
Now I will say that my first chemo treatment in 2013 left me extremely fatigued, to the point of not being able to walk very far, and when going to the doctor’s office, my husband pushed me in a wheelchair. I did not have any nausea, but I felt like I had been “wrung out like a wet mop!” My hair began to loosen with each brush stroke, and I wound up having my head shaved. So the second time around, I just went to the beauty shop and before all my hair fell out, I said, “Just give me a buzz cut.” After all, it is just hair and it will grow back. So if that’s our biggest loss, we are winners all!
In addition, I had some “left-over neuropathy” from the first chemo regimen in 2013 that is still with me. Still again, I’m still really enjoying a good quality of life for a Stage IV. So for us Stage IVs, it is always a question of “where will it spread to next?” I never had the luxury of having Stage III or under, but for them I know it is the same looming question. How can I keep this cancer at bay? What treatments have proven to be successful in holding the cancer back?
As far as CA125 counts some ladies have a very high count and some do not. My count was never above 300. It came down to 8 in December of 2015, but is now rapidly increasing and has reached 272 presently. Now my doctor cautions me to not read too much into this number. And so, I won’t, even though I know it means an increase when it is always only UP. Now I did have another CT scan to check my progress last week, and this Thursday, I will know the results of that.
As yet, I have had no ascites. And I have not had any lung involvement YET, but have had some stinging sensations periodically in my upper left chest area, so that is why I my oncologist ordered a CHEST, ABDOMEN & PELVIS CT (w/contrast). So this Thursday, I will know more about that.
Now as for other portions of Mom’s diagnosis, I had to look up the meaning. I took the liberty of sharing her complete diagnosis with others here in the first part of this letter. To understand the problems that surface on this site, as well as what’s going on in my own body, I often have to spend time searching the web to understand the problem more fully. Not being a doctor, or a nurse, I find the web is very helpful to me to understand what the terms mean. I hope Mom isn’t too depressed to quiz the doctor and ask lots of questions. I find that the more I understand what’s going on inside my body, the more accepting I am of it, since I think one of the best ways to combat this cancer is to “own” it, and then find out all I can about it. Now that doesn’t make it go away—it just gives me the comfort of knowing that I’m not neglecting to ask the right questions and trying to stay abreast of the treatments that are available.
Now I will tell you as for Stage IV with metastasis options are limited. However, I was able to have Cytoreductive Surgery to remove some “non-essential organs” to which the cancer would most likely spread since they were also in the abdominal cavity. Now naturally my ovaries were removed, but so were my fallopian tubes, spleen, gallbladder, omentum and parts of my intestines. I believe that is what has prolonged my life and presently I am enjoying a good quality of life. I do wish I could be of more help to you, but it is evident that your mother and I have similar problems, but dissimilar as far as the progression of our cancer at this time.
So far it seems that the traditional treatment is all that I have had—that being Carboplatin and Paclitaxel (Taxol), and Cytoreductive Surgery (CRS) that seems to be helpful to many women with our diagnosis. The targeted radiation of 3 tumors in the Caudate lobe of my liver comes under the category of metastasis. The tumors were successfully killed by “Cyberknife” treatment here locally.
Your mother was diagnosed in November of 2015, so now she is 7 months out from that date. I’m wondering if this is her first regimen of chemotherapy and exactly what has transpired since her diagnosis. Has any kind of surgery been mentioned as an option? Has the HIPEC method of chemotherapy been mentioned? That’s a heated intraperitoneal chemotherapy that is sometimes given to the patient as a part of the Cytoreductive Surgery. My surgeon ruled it out for me but going into the surgery, it was mentioned as a possibility. So I’m just thinking of things that women with Ovarian Cancer have had in the “treatment category.”
And while my surgery was never intended to be curative, it was intended to hopefully give me some extra time and quality of life. And I must say that with Peritoneal Carcinomatosis alone, I could have died shortly after diagnosis and I certainly didn’t know I would be alive this long. One of the references below is a bit shocking. Many women my age aren’t even given the option of Cytoreductive surgery, and some Stage III/IV women aren’t even treated. So finding the best hospitals and the best surgeons is vital. I credit my survival to date to the kinds of treatment that I’ve been given. So I’m grateful for the quality of life I’ve had, even with the awful chemotherapy that we all have to endure.
It’s a familiar saying, “You gotta’ go through the rain, if you want to see the rainbow.” Along with that saying is another meaningful one: “Life isn’t about waiting for the storm to pass—it’s about learning how to dance in the rain.”
Wishing for your mom many rainbows along the way!
Loretta
Peritoneal Carcinomatosis/Ovarian Cancer Stage IV
References and definitions that hopefully you will find as instructive as I did when trying to understand your mom’s diagnosis better.
1. http://csn.cancer.org/node/301646 - Recently a fella signed in under the “Peritoneal Cancer site” as “Brian from the North”. His mother was about to undergo her first chemo treatment and wanted to know how he could best help his mother with her chemotherapy treatments. So I shared with him things that were helpful for me during my chemotherapy treatments.
2. http://www.medicalnewstoday.com/releases/310709.php
“ONE IN 5 WOMEN WITH OVARIAN CANCER DOES NOT UNDERGO SURGERY, PENN STUDY REVEALS - Published: Thursday 2 June 2016RE
“Results show survival benefit of surgery for patients regardless of age or advanced disease, and point to barriers to cancer care delivery.
Nearly 20 percent of women with ovarian cancer do not undergo surgery, despite it being a standard part of treatment recommendations, according to new research from the Perelman School of Medicine at the University of Pennsylvania. The findings, which suggest women may live four times longer with surgical treatment, were especially striking among older patients; researchers found that nearly half of women over 75 with stage III/IV cancer do not have surgery and roughly 25 percent receive no treatment at all. The study is published this month in the journal Gynecologic Oncology…”
3. http://www.sciencedirect.com/science/article/pii/S0090825816301585
“Non-surgical management of ovarian cancer: Prevalence and implications…Highlights
18% of EOC patients in the NCDB did not receive surgical treatment.
22% of elderly patients with advanced disease received only systemic treatment;
23% were untreated. It is unclear how often deviation from best-practices guidelines is clinically appropriate…”
4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4324539/
“…Published online 2015 Feb 4. - New perspectives on targeted therapy in ovarian cancer
5. http://chemocare.com/chemotherapy/drug-info/carboplatin.aspx
Carboplatin - usage & side effects
6. http://chemocare.com/chemotherapy/drug-info/Paclitaxel.aspx
Paclitaxel (Taxol) Info
7. http://www.surgicaloncology.com/pc.htm
Sugarbaker Oncology Associates - Specialty Section for the Treatment of Peritoneal Carcinomatosis from Colorectal and Ovarian Cancer
8. http://www.merckmanuals.com/home/lung-and-airway-disorders/pleural-and-mediastinal-disorders/mediastinal-masses
“…Mediastinal masses include tumors, fluid-filled sacs (cysts), and other abnormalities in the organs of the mediastinum. These organs include the heart, the thymus gland, some lymph nodes, and parts of the esophagus, aorta, thyroid, and parathyroid glands…”
9. http://www.merckmanuals.com/home/lung-and-airway-disorders/pleural-and-mediastinal-disorders/overview-of-pleural-and-mediastinal-disorders
“…The pleura is a thin, transparent, two-layered membrane that covers the lungs and also lines the inside of the chest wall. The layer that covers the lungs lies in close contact with the layer that lines the chest wall. Between the two thin flexible layers is a small amount of fluid that lubricates them as they slide smoothly over one another with each breath. The area containing the fluid is called the pleural space…”
10. http://www.laparoscopic.md/digestion/omentum
“The omentum is a membranous double layer of fatty tissue that covers and supports the intestines and organs in the lower abdominal area. The omentum is made up of the greater omentum which is an important storage for fat deposits and the lesser omentum which connects the stomach and intestines to the liver…”
11. http://www.merckmanuals.com/home/lung-and-airway-disorders/pleural-and-mediastinal-disorders/pleural-effusion
“…Pleural effusion is the abnormal accumulation of fluid in the pleural space (the area between the two layers of the thin membrane that covers the lungs…Normally, only a thin layer of fluid separates the two layers of the pleura. An excessive amount of fluid may accumulate for many reasons, including heart failure, cirrhosis, pneumonia, and cancer…”
(My comment: Now as for “pleural effusion”, I did have a substantial amount of fluid drawn during my hospitalization, but haven’t had a problem since then.)
12. http://medical-dictionary.thefreedictionary.com/supradiaphragmatic
“supradiaphragmatic - [soo″prah-di″ah-frag-mat´ik] - above the diaphragm.”
13. http://www.cancer.org/cancer/ovariancancer/detailedguide/ovarian-cancer-treating-by-stage
“Treatment of invasive epithelial ovarian cancers, by stage
The first step in treating most stages of ovarian cancer is surgery to remove and stage the cancer. Debulking is also done as needed (see the section about surgery for details)…”
_______________________End of references__________________
Thank you Loretta Marshall! The info you shared is almost verbatim to the diagnosis on my PET and biopsy report. I started my first round of Carbo/Taxol on 6/2. You have provided more insight in the few posts I have managed to read this morning than any of the medical folks I have spoken with. It's not that they are not great, I just don't know what to ask yet. Keep posting lady!
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Thanks! Ms Lorretta and
Thanks! Ms Lorretta and Tethys.
The infirmation shared by you is quite insightful.
My mother has gone through 2 chemos now and 3rd is due in month end.
They will do surgery after that for reduction as you have suggest and three rounds of Chemo after that.
Regards,
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LDD123-Glad you found my info helpfulLDD123 said:Thank you Loretta Marshall!
Thank you Loretta Marshall! The info you shared is almost verbatim to the diagnosis on my PET and biopsy report. I started my first round of Carbo/Taxol on 6/2. You have provided more insight in the few posts I have managed to read this morning than any of the medical folks I have spoken with. It's not that they are not great, I just don't know what to ask yet. Keep posting lady!
Good afternoon "LDD" –
I see you've just joined, and I'm glad you've found my letters helpful. I write under the Peritoneal Cancer site too because that was my original diagnosis. Then when I went for my SECOND opinion, it was found in my Ovaries as well. And so I'm being treated as though it were only in my ovaries because the treatments are the same. You know I like being "on top of things" as a rule, but being Staged as a "IV" wasn't one of my goals!
My advice, do your homework, own your cancer, and be inquisitive. Don't wait for the doctor to tell you what he/she thinks. There are several good sites from which I can depend to give me good advice. There are so many good sites, but I suggest one of many that I find very thorough. That one is http://news.cancerconnect.com/types-of-cancer/ovarian-cancer/
Here’s a good “starting point” for you. I will try to help you find answers if I can. We’re all in the same “boat”, but still “afloat”.
OVARIAN CANCER MANAGEMENT
OVARIAN CANCER TOPICS
-
Information is powerful. Sign up for our Ovarian Cancer Newsletter
http://news.cancerconnect.com/newly-diagnosed/questions-to-ask/
And I will say that I spoke to my oncologist about "Immunotherapy" for my next foray. He said that presently there are clinical trials for Ovarian cancer but nothing that has been approved yet. He assured me that as soon as it became available, he would put me on it.
Perhaps this will be of help to you. Here is the letter I wrote to "Brian" about things I learned during my chemotherapy treatments. http://csn.cancer.org/node/301646
All the best,
Loretta
Peritoneal Carcinomatosis/Ovarian Cancer Stage IV
P.S. I'm not an advocate for AVISTAN in any treatment plan for Ovarian Cancer.
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Jagjit~Glad you found my own story helpful for your mom
Hello again -
It's good to know that someone is being helped by my posts. If anyone can benefit by my experience, I am happy to share it. It's good to know what one can expect, even when their experience may differ somewhat and it usually does. And actually since we last spoke, I've had another CT scan, and now I do have some pleural effusion. (My previous reference #11)
________________________________
“11. http://www.merckmanuals.com/home/lung-and-airway-disorders/pleural-and-mediastinal-disorders/pleural-effusion
“…Pleural effusion is the abnormal accumulation of fluid in the pleural space (the area between the two layers of the thin membrane that covers the lungs…Normally, only a thin layer of fluid separates the two layers of the pleura. An excessive amount of fluid may accumulate for many reasons, including heart failure, cirrhosis, pneumonia, and cancer…”
(My comment: Now as for “pleural effusion”, I did have a substantial amount of fluid drawn during my hospitalization, but haven’t had a problem since then.)
______________________________________
I went for a consult last week. Since I had a copy of my CT scan, I asked about the fluid mentioned in the report. I told you that previously I had some fluid drained during my hospital stay. So I asked him were these two things the same? My oncologist said the fluid that was drawn from my chest area shortly after my surgery was most likely as a result of my surgery. But this fluid is different. It is in the pleural space. He drew me a diagram, to show me where the space was along the outer edge of my lungs. I said, “Well what can be done about that? Can it be drained?” He said, “We’ll get an x-ray and we can see more accurately just how much fluid is there.” So that’s what I will do next.
Actually, as soon as I picked up a copy of my report, even before my appointment with my oncologist, I had begun looking up the definitions of those terms. I also looked up “side effects” of pleural effusion, one of which was a “dry cough.” I had been having a cough in the last 3 weeks or so, even though I didn’t have any kind of respiratory problems like a cold or the flu. But when I saw the “cough side effect”, I understood why I had been coughing. I told the oncologist about it, and he agreed that this was one of the symptoms.
You know this cancer is one day at a time—one step at a time—one pain at a time—like the sharp groin pain I had this morning. But hey, life goes on. We ‘gotta eat, clothes have to be washed, and other things have got to be done while I still have the energy. I can’t spend all my time “worrying”, that would leave no time for “enjoying" the things I can still do and being with the people around me that don’t want to let me leave. It’s so nice to feel wanted, isn’t it?
Well, may your problems and pains be long in coming, and find something good to thank God for today.
There are plenty of others suffering in ways that I would not want to be experiencing. And furthermore, none of us were in an Orlando club, and are now in the hospital fighting for our lives, are we? Think of those grieving families. We certainly sympathize and pray for those families today.
See, I feel better already, don’t you. At least we’re still alive.
All the best to all of you.
Love Loretta
P.S. On April 9, I sent "BrianFromTheNorth" a letter sharing some things I learned during my chemotherapy sessions. This was on the "Peritoneal Cancer" site, so hope you had a chance to share that with Mom. So I will just draw your attention to it again.
Here is that node: http://csn.cancer.org/node/301646
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