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Help me to understand what to expect in the later stages of gyno cancer...
My mother had several gynocological cancers a few years ago... endometrial and fallopian. The cancer was stage I... and appeared confined to the uterus/fallopian tubes. She had a historectomy and 4 rounds of taxol/platinum cancers. Last spring she had back pain and it led to discovery and ultimately a resection of a para-aortic lymph node metastisis. The Drs wanted radiation followed by chemo thereafter. I was not particularly enthusastic about radiation as I felt that it was a more local, rather than global approach. Before the radiation we also found that it was an MMMT, a very aggressive cancer with carcinoma and sarcoma qualities. She started to have back pain soon after the radiation began and wanted another CT. She finally got this test and a liver met was indicated. They followed up with a PET and there is cancer all over the place... abdomin, lungs, liver, etc. They now want gemzar chemo to see if they can slow it but believe the cancer to be incurable. My mother is a very strong and realistic person, as am I. We agree that the cancer is terminal but of course hope that gemzar will slow it. I would have done many things differently than her oncologist did, but that is all fairly irrelevant at this point. What has come to pass has come to pass. My family has come to terms with the fact that my mother will die of cancer, likely within a year and certainly before 2yrs time. We want to know what one can expect moving forward... What can we expect in terms of pain, suffering, and how will death ultimately come?
Fortunately my mother has never had ascites, which is certainly great as I know that can be difficult. She just went for a lung CT yesterday as the PET indicated mets in the plueral bases of the lungs. I think they want to see if has "crossed the line of departure" (for some reason I like military analogies for disease spread) crossing from the lymph nodes surrounding the lungs into the pluera or the lungs themselves. Obviously this increaeses the risk that the will disturb lung function.
I am really sorry to hear about your situation Tybear... that is really tough to hear. It is of course terrible to hear of anyone with this disease, but being 26yrs old myself, that is really hard to hear. I myself have a heart condition and my cardiac function has since improved but I had the "future transplant" conversation with my Dr last year and that conversation tore me apart, I can't begin to imagine how difficult your situation must be. You sound very strong.
To your point though I agree 150%. A friend of mine's father was striken with stomach cancer 2 yrs ago. As we are all probably aware, stomach cancer is one of those cancers that is almost universally bad. They were going to remove half his stomach to try to stop the disease, but never did as they found mets in all the nearby lymph nodes when they went in. At this point his brother Dr, my physcian friends, and I all knew that he would not survive. However he refused to ever face that reality. Before he went into the hospital leading up to his death he was talking to his clients about business plans for the coming year. He died within a year of that surgery where they found the regional spread. He left his family with an active business, 150,000 dollars of credit card debt, bank accounts accross the country, and a 15yr old outdated will.
I am really sorry to hear about your situation Tybear... that is really tough to hear. It is of course terrible to hear of anyone with this disease, but being 26yrs old myself, that is really hard to hear. I myself have a heart condition and my cardiac function has since improved but I had the "future transplant" conversation with my Dr last year and that conversation tore me apart, I can't begin to imagine how difficult your situation must be. You sound very strong.
To your point though I agree 150%. A friend of mine's father was striken with stomach cancer 2 yrs ago. As we are all probably aware, stomach cancer is one of those cancers that is almost universally bad. They were going to remove half his stomach to try to stop the disease, but never did as they found mets in all the nearby lymph nodes when they went in. At this point his brother Dr, my physcian friends, and I all knew that he would not survive. However he refused to ever face that reality. Before he went into the hospital leading up to his death he was talking to his clients about business plans for the coming year. He died within a year of that surgery where they found the regional spread. He left his family with an active business, 150,000 dollars of credit card debt, bank accounts accross the country, and a 15yr old outdated will.
I friend is currently losing her battle with this horrid disease. She went from feeling great, to suddenly have problems with a leaky bladder and just feeling very sick....it was her medical oncologist who sent her to the hospital saying something is wrong....there was a spread to her bladder and colon. The body also tends to fill with fluids that can be drained. She is currently receiving pallative chemo which is helping with ascites.
There are many women with this disease that never ever give up hope and then there are those that admit defeat. Admitting defeat isn't giving up, but, it is knowing, for oneself, that it won't get any better.
I wish you and your family the best and hope that the gemzar keeps your mother pain free.
There are many women with this disease that never ever give up hope and then there are those that admit defeat. Admitting defeat isn't giving up, but, it is knowing, for oneself, that it won't get any better.
I wish you and your family the best and hope that the gemzar keeps your mother pain free.
Mark... I'm really sorry for what you and your mother are going through. I am 28yrs old and am having my first recurrence in less than one year. I thought I originally had MMMT, but it turns out I have MPSC - very aggressive, and not likely to respond to chemo. Nice odds, huh? I agree with you, there's a time to be hopeful and a time to be realistic. I know what my stats are - that's not me being morbid, that's me being prepared. I will never be cured of this, and I know that. I'm trying to get my will, power of attorney, power of health and custody arrangements settled so I can have peace of mind. I read that the end stages usually involve a bowel blockage or kidney failure - I'm sure any pain can be managed with the proper drugs. Good luck to you and your family.
Becky
p.s Stephers - where about's in Canada are you? I'm from Barrie, Ontario.
Becky
p.s Stephers - where about's in Canada are you? I'm from Barrie, Ontario.
Not bad thinking... but I'm not sure if I was clear that she had the para-aortic lymph node removed and the pain went away... It started back again after the radiation... The radiation did allievate that pain, but at what expense? Lost time and alot of sickness. Abdominal radiation is pretty bad... she had alot of naseau and vomiting. That time probably would have better been spent determining whether the gemzar is going to be effective. After the mets were found the radiation oncologist told her the radation was "a complete waste of time."
You know I was thinking about why they would do radiation on that node. You had mentioned that your mom was in alot of pain from it, I know that here they often do radiation as a way of controlling pain. Maybe that is why she had to go through radiation was to contol the pain on that node - does that make sense in your case? I know I was really pissed when they did radiation on my hip I heard a nurse refer to it as palliative measure. My friend has really bad bone mets and they give her raditation to contol the pain.
It is interesting... she was cleaning around the house a few days ago and seemed really out of breath and I jokingly said something like "are you sure you don't have a heart condition (I do myself)?" She didn't make much of it and sort of forgot about it and then these lung mets show up... Now she thinks she might be a bit out of breath on exertion but it could be the power of suggestion... hard to tell at this point.
Thanks... My mother has not "given up" she just realizes that the cancer will take her and probably not in a huge amount of time. She cried as much as anyone can cry three yrs ago when she was diagnosed. But now she is ok with the fact that she will pass from this disease. She is mostly concerned with her children and pets and what is left behind. She is not bleak, depressed, or even scared (oddly enough, I know I would be). Again taxins are out for her due to severe neuropathy. How is doxil treating you stephers?
Stephers... that is a great story on your beating the odds. My mother can't do taxol again as a result of extreme neropathy... Hopefully the gemzar will be as good.
Hi Mark....It sounds like you have given up on your Mum re the cancer? Has she given up? You say your Mum is a 'strong and realistic person'. I would say the same about myself (Dx Ovca 3/4 Feb'04...one Surgeon didn't want to proceed with the operation)...... but where there's life there is hope, and life is sweet.. and much sweeter when one is 'looking down the barrel'. It's a natural instinct to fight for life, but your Mum will need your support, so please don't give up on the situation yet. I've had just on 3 years, which has confounded my Doctors, and I really feel that part of this has been my mental attitude. If one succumbs mentally, then physically the body will find the fight much harder, in my mind anyhow. I have a CA.125 currently over 7000 but I'm feeling really well...have a great appetite and lead an active life. Death has never crossed my mind at anytime. A friend of mine here died a couple of weeks ago from Ovca... and her death was very peaceful, and quite quick. The Hospice nurses do a wonderful job, and it's not like it was years ago apparently, so I don't think your Mum will suffer. Your Mum is way too young to go, so I'm hoping that the Gemzar will slow the cancer down, and your Mum will have more time of life with you and your family.
Stay strong Mark, and support your Mum in what she feels is right for her.
Best wishes and hugs...Helmar...
Stay strong Mark, and support your Mum in what she feels is right for her.
Best wishes and hugs...Helmar...
I think that my mother has the right to be angry with hope... with all the false roads it led down and could have been avoided if a less optimistic prognosis was given. One example...
The chemo v. radiation decision:
Stats would have indicated with MMMT that met was likely and therefore chemo ought to have been indicated.
But hope and a good look around during surgery led the oncologist to think prehaps it was contained and advocate radiation. My mother and I were both uneasy about this given stats.
My mother had 20 abdominal radiation treatments and was miserable with naseau and vomiting. What was this for in the end? Nothing. Had the oncologist been a bit more grime and expected metastisis given the agreesive nature of her tumor it would never have been given.
This is a forum for those seeking anwser for themselves or for their loved ones with ovarian cancer. Not just those who believe in a devine God or share a particular perspective on hope.
The chemo v. radiation decision:
Stats would have indicated with MMMT that met was likely and therefore chemo ought to have been indicated.
But hope and a good look around during surgery led the oncologist to think prehaps it was contained and advocate radiation. My mother and I were both uneasy about this given stats.
My mother had 20 abdominal radiation treatments and was miserable with naseau and vomiting. What was this for in the end? Nothing. Had the oncologist been a bit more grime and expected metastisis given the agreesive nature of her tumor it would never have been given.
This is a forum for those seeking anwser for themselves or for their loved ones with ovarian cancer. Not just those who believe in a devine God or share a particular perspective on hope.
I just have had the first treatment a couple of weeks ago, its actually fine except after I went to the gym I got a rash. but its fine. I feel really good - I went to the GYM- I didn't even do that before I had cancer. I have a really good doctor at the Tom Baker in Calgary. That lymphnode that was left over after my taxol/carbo was cut out in my second laparotamy. So I am not even sure if I have any cancer left. Likely though due to the aggressivness of MMMT something has grow somewhere. So far on Doxil overall I would say I feel much better then I did on Taxol/carbo. So I hope your moms new chemo helps her. I know you do not want to hear about GOD and Hope however many of the women on this message board must CLING to God and Hope cause that is all we have left.
Wow... The gym... thats pretty impressive. My mother hasn't been since prehap August when the para-aortic node pain required alot of vicodin for pain. Did you ever have any symptomes from the lung or liver mets... so far my mother has not.
Hi Mark, I do not recall having any REAL symptoms from lung and liver mets, after I found out I had them I would get chest pains but my doctor explained to me this was not from cancer but from anxiety. No coughing even and I regret to admit I even used to smoke. Also I thought I had liver pain but I think it was actually taxol/carbo attacking my intestines. The met I could feel was in my hip bone it was never severe pain. I think bone mets and I am guessing that mets in the intestines causing blockages are where a lot pain would come from. There are alot of drugs for us ovarian cancer people that we can try before we call it a day. I'm sure your quite aware of them. Another thing to keep in mind everyday we survive is a day closer to a better drug. Thats what I hope for the day when they can come with something better for us even if I have suffer a little while I wait, I always say chemo sucks but its better then being dead. Thats just my point of view.
Hi Mark, Cancer doesn't have to hurt. I know of one ovarian cancer patient who is in her 80s with Stage IV who has no pain however she does use accupunture. Ayurvedic medicines also give complete relief from pain and rejuvenate cells. Other ways to manage pain are massage, music therapy, distractions eg reading or writing, deep breathing, heat, exercise, humor and pet therapy. If your mom does have pain later (let's hope she doesn't) she has the right to have pain relief by health professionals, you, and others around her. Most important, your mom has the right to be treated with respect at all times. My auntie had ovarian cancer and she used to have a pain patch - she seemed to be perfectly okay and died in her sleep. Msrk, your mom's doctor may say one thing - based on stats, but you'll be surprised how wrong they can be!
Hi, I am 27 years old and I also have MMMT of the ovary STAGE 4. I would just like to say, I was given 2 months to live in MAY 06. Still here. I had mets to my LIVER, LUNGS and Hip bone as well as several lymphnodes and omentem. After 9 rounds of Taxol/Carbo my disease was only left in one lymphnode. I know exactly what the studies say about MMMT - or CARCINOSARCOMA, however everyone is different and responds differently to different drugs. The doctors do not decide when you die - GOD does. Please do not give up hope at least for your mothers sake it is all we cancer patients have to hang on to. If she is going to die lets make the rest of her life as good as possible. Also, regarding your questions on how this will kill her, I spent a lot of time wondering to how it might kill me and what the end will look like, however again there is no way of knowing that. Please just hold on to hope and live for today. Deal with the future when it comes. I will pray for your mother.
If there is a Hospice where you are, contact them, you will need a physician referral. They have a goal of helping the person and the family deal with the dying process. They assist with home care needs, pain control and emotional support. Best wishes to your mother, she is lucky to have you.
I am a retired nurse. I do know the brutal facts of death by cancer. As a young nurse I took care of many people dieing in hospitals, at that time I made up my mind that if this came to me, I would try to find a way to end it all. But my outlook has changed since then, death comes to us all in time, but to give up hope is not what I do my research for now. My daughter is 49, her cancer was caused by her father being radiated in WW2, my other children and grandchildren are at increased risk also. I will continue to fight for their lives as long as I live now. The brutal facts you can get somewhere else, not from me. Make your Mothers life account for something. The ladies on this website are fighters, not quitters. I will add your Mother to my prayers. God is not a quitter either.
My mother is 53. Thank you for the comment, but again my family is not of the same perspective. We are not hoping for or expecting any cure. We have unusual family history of tradegity that has harded us and made us extremely realistic and cold-hard scientific about even the most difficult of things. To be honest we are really quite sick of hope as it seems to have gotten in the way of honest anwsers from doctors for a long time now. The moment my mother and I saw MMMT we knew that things were very bad. The Drs were right there with the.. "well, it may not be as bad as the studies you are reading would tend to suggest." When she suspected metastisis as a result of pain, they were even dismissive... "it could not have spread this soon." Well, guess what? It had, it had big time. The pathology and all those "medical journal studies we read on the internet" where absolutely on target. Thank you for your comment as I know you are trying to help, but what we would like to know right now is what the end (or the months leading up to it) would look like. We are sick of hope... we just would like some brutal honest facts.
I am also off taxol/carbo they are now trying doxil - well caelyx here in Canada. I also had 10 rounds of radiation for my hip met. Often times ovarian cancer has become a chronic disease. And yes it will ultimatly take me but I am enjoying the days I have left. The chemo and radition have given me the time to live. There are bad days and good days. If you are concerned about your mothers treatment have you got a second opinion? you can as the doctor on this website, she usually replies pretty fast.
May I suggest American Cancer Treatment Center ? They do not give up easily. How old is Mother? If the ACTC is not an option, then a good hospice care in the last months will ease her passage. Hate to suggest alternatives, but there are many natural remedies on the market that may just be an answer to longivity. Essiac teas, Medicine Man tea, are just a couple. Research the natural cancer cures, it sounds that you have nothing to lose, and everything to gain if they help. Do not give up hope, and prayer also is a great help. I do not have cancer, but my daughter does, and we are a family fighting for answers to cures. God Bless you for caring enough to seek out help for your Mother.
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