Aa
what's your take on this?
I had an MRI on 2/15. It showed 4 tumors the largest on my tempoal lobe, the others on language centers. Another MRI was done during radiation (no change), a third was done on 3/14 trying to see if there was something else going on to explain the baffling side effects I was having. On 3/ I had my 18th & final WBR. At that time the Doc said the latest MRI was identical to the other 2, so no explaination for my symtems. He said he wanted me to see the oncologist imediately, originally his recommendation was to wait 6-8 weeks before starting chimo, but he wanted me to start imediately.
Then I heard nothing. 2 weeks went by. I called rpeatedly, got nurses who said they'd get back to me, but didn,t, then I learned the oncologist was out of town on vacation, was given an appointment for April 3rd.
I asked about speaking to the doc covering for my vacationing docter, that got me nowhere. At this point they are telling me I have to eait for my appointment on the 3rd.
I have a sneaking suspicion that what is happening is that what was supposed to happen was the radiation was to kill the malignant cells in the tumors, leaving just the capsules behind but that didn't happen. They aren't any bigger but are still there exactly as they were before radiation. So basically radiation didn't work. I wonder if what they are thinking is there's no point in doing chemo because either the tumors will kill me soon or the effcts of WBR will kill my brain soon making chemo a waste of time & why have me wiped out on chmo in my final days. that,s why they arent rushing in to talk to me, because the news is bad. What do you think? Oh, it was stage 3 ovarian, surger 12/7/05. Chemo of gem & carbo. count went from 803,9 to a low of 5. A CA125 ib first week of Feb. was 27. On Feb 15 it was 55 in ER. Anoter done on the 19th was 75. CT of abdomen show full of tumor. becaus of tumor location & what functions are effected,no surgery.
Then I heard nothing. 2 weeks went by. I called rpeatedly, got nurses who said they'd get back to me, but didn,t, then I learned the oncologist was out of town on vacation, was given an appointment for April 3rd.
I asked about speaking to the doc covering for my vacationing docter, that got me nowhere. At this point they are telling me I have to eait for my appointment on the 3rd.
I have a sneaking suspicion that what is happening is that what was supposed to happen was the radiation was to kill the malignant cells in the tumors, leaving just the capsules behind but that didn't happen. They aren't any bigger but are still there exactly as they were before radiation. So basically radiation didn't work. I wonder if what they are thinking is there's no point in doing chemo because either the tumors will kill me soon or the effcts of WBR will kill my brain soon making chemo a waste of time & why have me wiped out on chmo in my final days. that,s why they arent rushing in to talk to me, because the news is bad. What do you think? Oh, it was stage 3 ovarian, surger 12/7/05. Chemo of gem & carbo. count went from 803,9 to a low of 5. A CA125 ib first week of Feb. was 27. On Feb 15 it was 55 in ER. Anoter done on the 19th was 75. CT of abdomen show full of tumor. becaus of tumor location & what functions are effected,no surgery.
Dear Jo.... You come across as being a very warm and caring person, and I am just so, so sorry that you are going through all of this. None of us should be going through battling this horrible disease. It seems you have a wonderful family, and they are what keeps us going... our families. Compared with yours, I have only a small family... 2 children.. having lost my eldest son in 2000 to asthma. My hubby decided last year that he didn't want to be around to support me through the Ovca, so he's gone, but I have a couple of brothers and their families, and two beautiful children... plus good friends... and I'm a strong person, mentally, so that helps too, I think.
I hope you will stay in contact with all of us here, and let us know how you are doing as often as you would like to. In the meantime, my thoughts and prayers are with you, and your family.
One of my brothers is a Viet-Vet (Navy) so they went through a lot too.
I hope you can enjoy each and everyday Jo.. and you will remain pain-free.
Sending you hugs from Australia..... Helen....
I hope you will stay in contact with all of us here, and let us know how you are doing as often as you would like to. In the meantime, my thoughts and prayers are with you, and your family.
One of my brothers is a Viet-Vet (Navy) so they went through a lot too.
I hope you can enjoy each and everyday Jo.. and you will remain pain-free.
Sending you hugs from Australia..... Helen....
Wow, thanks for all your caring responses! It's humbling.
I believe that all the prayers that are going out for me all over the world are working, not to heal me or save my life, but to give me a positive outlook & peace with all this.
I believe that whatever I was to learn in my life & whatever influence my life is meant to have is coming to an end. It's time for me to move on to the next phase & it's time for my spirit to move. I'm glad I know I'm going because it allows me to finish things, to give gifts, keepsakes that, if left to my husband he'd have thrown out because he wouldn't know thier significance.
People who were going to visit later in the year are coming now. My memorial sevice is all planned & it's going to be a happy celebration that I know people will nevr forget because I believe they will leave feeling good.
Painting projects are getting finished & all the clutter is going. The house looks great. So far everything I've needed, walker, toilet riser & hand bars, bath seat, wheelchair, somebdy's had & brought right to me like magic. Things just fall into place. A neighbor who has a home repair business came over last weekend & built a fabulous ramp for me as a gift!
I grew up just 5 miles from here. I moved to Florida in 1996, where I met & married Larry, the love of my life. One day, out of the blue, he announced we were moving to New York. My kids were here & I'd been wishing but his kids are there in Florida so I really didn't think he'd leave so I never said anything.
We wanted a new home but prices were outrageous. We decided to go with a Manufactured home & moved into the most wonderful park. For whwtever reson the park people go out of their way for us & we couldn't be happier. My daughter bought a home here 3 years ago & lives just around the block with my 2 granddaughters & her new husband. Then this past summer my son bought a home here just down the street! It's almost like the stage was being set in properation for this. My parents live in my childhood home, just 5 miles away. I have a large family, dozens of aunts & uncles, 100's of cousins. We decided it was time to trade for a new vehicle while the old one still had good value & the salesman was my very dear cousin so don't you know we got an amazing deal, I think he gave up his commission for us!
My husband is a disabled Vietnam War Vet. His best friend of over 35 years is renting a room in Florida. They've talked & he's moving here in May & they're going to roommates. They used to live together years ago & it worked out great so they're looking forward to having each other for company again. I'm afaid Larry would become suicidal if Ralph weren't here so it' a Godsend.
I'm in good spirits. Lots of laughing & good times. I have no pain, just some headaches sometimes, advil works. So the prayers are working, making the inevitable okay,I'm at peace with it. There is no cure for this cancer, so it was always just a matter of when.
So keep those thoughts & prayers coming, they do help & it means alot to know that total strngers are so kind & thoughtful to care.
I believe that all the prayers that are going out for me all over the world are working, not to heal me or save my life, but to give me a positive outlook & peace with all this.
I believe that whatever I was to learn in my life & whatever influence my life is meant to have is coming to an end. It's time for me to move on to the next phase & it's time for my spirit to move. I'm glad I know I'm going because it allows me to finish things, to give gifts, keepsakes that, if left to my husband he'd have thrown out because he wouldn't know thier significance.
People who were going to visit later in the year are coming now. My memorial sevice is all planned & it's going to be a happy celebration that I know people will nevr forget because I believe they will leave feeling good.
Painting projects are getting finished & all the clutter is going. The house looks great. So far everything I've needed, walker, toilet riser & hand bars, bath seat, wheelchair, somebdy's had & brought right to me like magic. Things just fall into place. A neighbor who has a home repair business came over last weekend & built a fabulous ramp for me as a gift!
I grew up just 5 miles from here. I moved to Florida in 1996, where I met & married Larry, the love of my life. One day, out of the blue, he announced we were moving to New York. My kids were here & I'd been wishing but his kids are there in Florida so I really didn't think he'd leave so I never said anything.
We wanted a new home but prices were outrageous. We decided to go with a Manufactured home & moved into the most wonderful park. For whwtever reson the park people go out of their way for us & we couldn't be happier. My daughter bought a home here 3 years ago & lives just around the block with my 2 granddaughters & her new husband. Then this past summer my son bought a home here just down the street! It's almost like the stage was being set in properation for this. My parents live in my childhood home, just 5 miles away. I have a large family, dozens of aunts & uncles, 100's of cousins. We decided it was time to trade for a new vehicle while the old one still had good value & the salesman was my very dear cousin so don't you know we got an amazing deal, I think he gave up his commission for us!
My husband is a disabled Vietnam War Vet. His best friend of over 35 years is renting a room in Florida. They've talked & he's moving here in May & they're going to roommates. They used to live together years ago & it worked out great so they're looking forward to having each other for company again. I'm afaid Larry would become suicidal if Ralph weren't here so it' a Godsend.
I'm in good spirits. Lots of laughing & good times. I have no pain, just some headaches sometimes, advil works. So the prayers are working, making the inevitable okay,I'm at peace with it. There is no cure for this cancer, so it was always just a matter of when.
So keep those thoughts & prayers coming, they do help & it means alot to know that total strngers are so kind & thoughtful to care.
Please, please seek another opinion. There are numerous major cancer centers that you can send your records to, I also believe that thru Cancer Centers of America they help pay the cost of travel.....maybe it is just that these doctors have never seen this???? Remember the odds of mets to the brain are only like 1percent, so, most GYN/ONCs have never experienced this. I think that they just don't know what to do!!!!
Even in a case of "no hope" a doctor does not abandon their patients. They work with them on pallitive (I am a bad speller) care. I am appalled at the treatment you are receiving.
I will stress again the importance of seeing another doctor associated with a major cancer center....aren't you close to Roswell??? John Hopkins isn't that far, Fox Chase, MD Anderson....there are so many excellent cancer centers...you are dealing with a very rare disease within a rare disease...the doctor's just don't know what to do and are not handling it properly. You deserve better medical care. I am not certain how to go about getting a consulation at any of these cancer centers, but, I am sure that between all of us, we can help you thru the process.
Please let us know what happens and what we can do to help
We care!!!!!
Pam
Even in a case of "no hope" a doctor does not abandon their patients. They work with them on pallitive (I am a bad speller) care. I am appalled at the treatment you are receiving.
I will stress again the importance of seeing another doctor associated with a major cancer center....aren't you close to Roswell??? John Hopkins isn't that far, Fox Chase, MD Anderson....there are so many excellent cancer centers...you are dealing with a very rare disease within a rare disease...the doctor's just don't know what to do and are not handling it properly. You deserve better medical care. I am not certain how to go about getting a consulation at any of these cancer centers, but, I am sure that between all of us, we can help you thru the process.
Please let us know what happens and what we can do to help
We care!!!!!
Pam
Please, please seek another opinion. There are numerous major cancer centers that you can send your records to, I also believe that thru Cancer Centers of America they help pay the cost of travel.....maybe it is just that these doctors have never seen this???? Remember the odds of mets to the brain are only like 1percent, so, most GYN/ONCs have never experienced this. I think that they just don't know what to do!!!!
Even in a case of "no hope" a doctor does not abandon their patients. They work with them on pallitive (I am a bad speller) care. I am appalled at the treatment you are receiving.
I will stress again the importance of seeing another doctor associated with a major cancer center....aren't you close to Roswell??? John Hopkins isn't that far, Fox Chase, MD Anderson....there are so many excellent cancer centers...you are dealing with a very rare disease within a rare disease...the doctor's just don't know what to do and are not handling it properly. You deserve better medical care. I am not certain how to go about getting a consulation at any of these cancer centers, but, I am sure that between all of us, we can help you thru the process.
Please let us know what happens and what we can do to help
We care!!!!!
Pam
Even in a case of "no hope" a doctor does not abandon their patients. They work with them on pallitive (I am a bad speller) care. I am appalled at the treatment you are receiving.
I will stress again the importance of seeing another doctor associated with a major cancer center....aren't you close to Roswell??? John Hopkins isn't that far, Fox Chase, MD Anderson....there are so many excellent cancer centers...you are dealing with a very rare disease within a rare disease...the doctor's just don't know what to do and are not handling it properly. You deserve better medical care. I am not certain how to go about getting a consulation at any of these cancer centers, but, I am sure that between all of us, we can help you thru the process.
Please let us know what happens and what we can do to help
We care!!!!!
Pam
Oh my god. I just don't know what to say, but I feel compelled to say something. I'm not much use giving cancer advice as my 15 yr. old daughter just began her jouney with ovca in Dec. 06. I know that cancer has changed me in the sense that I am very angry. I use to think yea, cancer is a raw deal but now....I literally hate it. Your words tear at my heart. I am truely sorry for your situation. I am from Buffalo, which is not too far away. So I honestly wish that I could run right down there and rip this monster from you. My heart is just absolutely broken. But I want you to know that you are in my prayers. Hang in there and keep the postings coming. I will provide any support that I can.
God Bless,
Bob
God Bless,
Bob
Hello... you are at probably the toughest time of your life and you are still fighting.....what a champion! I don't know you but I would like to get to know you......we know where you live ...tell us about you....who are you....not just your disease but tell us about the person inside your body. Where did you grow up, how many kids in your family, where did you fit, who are you married to....your own children..best friends...everything.....tell us about you! Please let all of us get to know you....of course, please do keep us posted regarding your health issues.......know you are not alone...nobody can have too many friends ...
Peace.
dian
Peace.
dian
Just keep typing, I will respond... You need to have contact with someone. Any support group around you, who can help you? Please send us some update daily, you need to write out from yourself. I will respond, and please t hink, you are not alone. Sue
I live 50 miles North oof Albany, New York. My original treatment was in Albany & I participated in a Clinical study. The combo happened tp be one that my tumor was especially sencitive to & I had a really good experience with, the only side effect I had was sleepines. It really was a breeze.
I guess it went too well because it came back with a vengence. I'm now going to a new cancer 10 minutes from my home. Good thing cause those daily rad. treatments would have been awful if I had to go an hour away each day for 2 minutes. Of course the radiation is killing my brain. Every dau since I started treatment there is noticable change for the worse. I wonder every day what I won't be able to do that I was able to the day before. For instance, 2 days ago the physical tharapist that came to my home insisted I no longer try to walk around the house without a walker. So I was shown the proper way to use it & everything was cool. Yesterday I tried to walk with it & was stumbling all over. That promoted me to start seeking ouy a power chair because I see the writing on the wall. I have a manual wheelchai but I don't have the strength to use it on carprt, it's like quicksand,all the strength I have to grt nowhere. And my typing is getting worse, obviously.
I guess it went too well because it came back with a vengence. I'm now going to a new cancer 10 minutes from my home. Good thing cause those daily rad. treatments would have been awful if I had to go an hour away each day for 2 minutes. Of course the radiation is killing my brain. Every dau since I started treatment there is noticable change for the worse. I wonder every day what I won't be able to do that I was able to the day before. For instance, 2 days ago the physical tharapist that came to my home insisted I no longer try to walk around the house without a walker. So I was shown the proper way to use it & everything was cool. Yesterday I tried to walk with it & was stumbling all over. That promoted me to start seeking ouy a power chair because I see the writing on the wall. I have a manual wheelchai but I don't have the strength to use it on carprt, it's like quicksand,all the strength I have to grt nowhere. And my typing is getting worse, obviously.
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