PET/CT shows progression:(

kayandok said:

Thank you!!!!
I AM feeling the love!!!!

I am hot on the trail to finding a way to survive as long as I can. I am beating on all the doors. Stay tuned for more updates soon.

I would not be in one piece without this board's undying love and suport.

K❤

childofthestars said:

Kathleen
I am truly saddened
Kathleen
I am truly saddened to hear this news BUT I know you are a fighter and will keep looking for other options. My prayers and thoughts are with you.
with love
Michelle x

Hissy_Fitz said:

I was hoping you would weigh
I was hoping you would weigh in on this, Jonie. I knew that you and Kathleen were in roughly the same place and that you would have some good input.

Carlene

PS....I hope Larry has recovered from the attack of the bleeding heart Liberal. LOL
Bob gets so anxioius when I get into a political discussion with anyone. He is the ultimate peace-keeper, and he is always afraid I will end up verbally duking it out with a conservative friend - or relative. Of course, I would never do that. I don't know why Bob thinks I would. This time, LOL doesn't quite do it justice....maybe I should say big, big LOL.

kayandok said:

options -a bit of a long one
My doctor is not saying much, other than he doesn't think I should stop irinotecan YET. I am the one that asked for the letters of recommendations for Radiation Center and IGT, and he willingly did it. But, he is not really thinking very aggressively right now. I have pretty much exhausted all the options in his mind (there are no more chemo's left in his Japanese tool box). He is kind and always supportive with doing the chemo as I trudge back from the States after my surgeries, usually at the doses that I request. But, I don't rely on him to keep me alive, if you know what I mean. I know this all sounds pretty weird for some of you to read, but remember, I have never been on a conventional path since the beginning.

Carlene, there are big cancer hospitals here, and I did get a second opinion at one in the beginning of my journey. If I had gone with their protocol, i would be dead by now. I tried to get into the main Cancer Center in Seattle when I was first dx 4 years ago, and they told me there was a 2 month wait. Again, I would have been dead by the time I got in. I believe that part of the complication, was that they knew I was calling from overseas, and they just didn't trust I was a US citizen etc etc. Only a guess, but I did beat on that door pretty hard. I really wanted to have surgery in Seattle, close to my family support. I went to CA, because I had a friend (that was a 7 year late stage OC survivor with no recurrence - she still has not recurred) that recommended her doctor and got permission from him, for me to call his cell phone. As it turned out, it was a good choice, he has a lot of long term survivors as patients. He is an absolutely amazing surgoen. Doing surgery in CA is complicated, as I always have to board a plane as soon as I am able to go back to Seattle to recover, before coming home to Japan. My now 79-year-old mom has done it 3 times with me. She is amazing! One of the surgeries was a second look and 2 were debulk surgeries.

Jonie, I would love to compare notes with you, over a cup of coffee or glass of wine, too bad you don't live closer. I suspect that we are in a very similar place, although you do have a few more options for chemo, I think.

My options are:

1. Stop the chemo, go on a nice family vaca and forget about cancer!!! Some days this acually sounds quite lovely, but I really don't think I would enjoy one minute of that vacation. I take that back, I would enjoy the walk on the beach!!!!

2. Go back to Tokyo to Dr. Moneybags and pay him $150000/month to take avastin and abraxan. This might give me a couple extra months until I have to stop because of side effects and/or lack of funds.

3. Go to the States and get on medicare/medicade (whatever I could qualify for) and see what they offer. I don't have much hope that I would get into the system before I died first. And once I did, it would just be some palliative chemo to barely keep my alive until I did. Am I too cynical?

4. Go back to my surgeon in CA and ask for another surgery. He will do it, I'm sure, but then what? What chemo do I do? And I don't trust my body will bounce back from surgery like it has before. We are probaby looking at a year or so away from family and staying with mom, but again, I really can't predict. This is scary, but most likely my road to survival. I told Mark yestereday, that I would rather die in surgery, fighting the cancer than die out of pain of the cancer taking over. I know I inherited German Fight Genes! The good part is that my oldest son is in uni, 20 minutes away from mom's house. I could see him more often:)

5. Stay on irenotecan, let nture take it's course...... Sounds too boring and not how I want to die.

Meanwhile, I sent a detailed e-mail to my surgeon that has saved my life before, and have an appointment to speak with him tomorrow. I spoke with him briefly this AM (he was on his way to surgery as usual) and I know him well enough to suspect he did read my e-mail and the lilt in his voice suggests that he will say YES! YIkes.

Meanwhile, my husband found some kind of insurance that is for US citizens that even pre-existing conditions can qualify for. He is applying as I write. Could this really be true? There has got to be fine print we are missing here.... Anyone know anything about this? Can I get this PLUS some kind of medicare/medicade thing? Could they put me on some kind of express route so I could get it before I had surgery? So many unanswered questions still.....

It is raining very hard here, and we are hunkered down for another huge typhoon coming in late tonight. The sound of the rain is somehow calming my nerves, not to mention naustalgic of Seattle days. Oddly, I'm not pannicked, like I have been before when at a crossraods, and just talking/praying with my husband about all our options. I do trust in God, that he will take care of me, somehow. I have to say that I would be a mess without my faith in His love for me. And without all you lovely teal sisters and fighters. You inspire me daily.

Sorry for the very long post, I do appreciate so much, the care and concern, covet the prayers, and love love love all the good thoughts and warm hugs too:)

k❤

PS As far as Clinical Trials, I have checked into them several times, with my Seattle doctor (I did eventually get into a very well known and poplular doctor at the Swedish Hospital a couple years ago and check in with him from time to time, for second opinons on chemo etc. He is not aggressive and told me several times that I have had adequate surgery) and I don't qualify ever, because of insurance, distance and condition. In Japan, I am completely ruled out, because I am not Japaneses. My lack of Japaneseness pollutes the number. You have to understand Japan to get this one...

kayandok said:

options -a bit of a long one
My doctor is not saying much, other than he doesn't think I should stop irinotecan YET. I am the one that asked for the letters of recommendations for Radiation Center and IGT, and he willingly did it. But, he is not really thinking very aggressively right now. I have pretty much exhausted all the options in his mind (there are no more chemo's left in his Japanese tool box). He is kind and always supportive with doing the chemo as I trudge back from the States after my surgeries, usually at the doses that I request. But, I don't rely on him to keep me alive, if you know what I mean. I know this all sounds pretty weird for some of you to read, but remember, I have never been on a conventional path since the beginning.

Carlene, there are big cancer hospitals here, and I did get a second opinion at one in the beginning of my journey. If I had gone with their protocol, i would be dead by now. I tried to get into the main Cancer Center in Seattle when I was first dx 4 years ago, and they told me there was a 2 month wait. Again, I would have been dead by the time I got in. I believe that part of the complication, was that they knew I was calling from overseas, and they just didn't trust I was a US citizen etc etc. Only a guess, but I did beat on that door pretty hard. I really wanted to have surgery in Seattle, close to my family support. I went to CA, because I had a friend (that was a 7 year late stage OC survivor with no recurrence - she still has not recurred) that recommended her doctor and got permission from him, for me to call his cell phone. As it turned out, it was a good choice, he has a lot of long term survivors as patients. He is an absolutely amazing surgoen. Doing surgery in CA is complicated, as I always have to board a plane as soon as I am able to go back to Seattle to recover, before coming home to Japan. My now 79-year-old mom has done it 3 times with me. She is amazing! One of the surgeries was a second look and 2 were debulk surgeries.

Jonie, I would love to compare notes with you, over a cup of coffee or glass of wine, too bad you don't live closer. I suspect that we are in a very similar place, although you do have a few more options for chemo, I think.

My options are:

1. Stop the chemo, go on a nice family vaca and forget about cancer!!! Some days this acually sounds quite lovely, but I really don't think I would enjoy one minute of that vacation. I take that back, I would enjoy the walk on the beach!!!!

2. Go back to Tokyo to Dr. Moneybags and pay him $150000/month to take avastin and abraxan. This might give me a couple extra months until I have to stop because of side effects and/or lack of funds.

3. Go to the States and get on medicare/medicade (whatever I could qualify for) and see what they offer. I don't have much hope that I would get into the system before I died first. And once I did, it would just be some palliative chemo to barely keep my alive until I did. Am I too cynical?

4. Go back to my surgeon in CA and ask for another surgery. He will do it, I'm sure, but then what? What chemo do I do? And I don't trust my body will bounce back from surgery like it has before. We are probaby looking at a year or so away from family and staying with mom, but again, I really can't predict. This is scary, but most likely my road to survival. I told Mark yestereday, that I would rather die in surgery, fighting the cancer than die out of pain of the cancer taking over. I know I inherited German Fight Genes! The good part is that my oldest son is in uni, 20 minutes away from mom's house. I could see him more often:)

5. Stay on irenotecan, let nture take it's course...... Sounds too boring and not how I want to die.

Meanwhile, I sent a detailed e-mail to my surgeon that has saved my life before, and have an appointment to speak with him tomorrow. I spoke with him briefly this AM (he was on his way to surgery as usual) and I know him well enough to suspect he did read my e-mail and the lilt in his voice suggests that he will say YES! YIkes.

Meanwhile, my husband found some kind of insurance that is for US citizens that even pre-existing conditions can qualify for. He is applying as I write. Could this really be true? There has got to be fine print we are missing here.... Anyone know anything about this? Can I get this PLUS some kind of medicare/medicade thing? Could they put me on some kind of express route so I could get it before I had surgery? So many unanswered questions still.....

It is raining very hard here, and we are hunkered down for another huge typhoon coming in late tonight. The sound of the rain is somehow calming my nerves, not to mention naustalgic of Seattle days. Oddly, I'm not pannicked, like I have been before when at a crossraods, and just talking/praying with my husband about all our options. I do trust in God, that he will take care of me, somehow. I have to say that I would be a mess without my faith in His love for me. And without all you lovely teal sisters and fighters. You inspire me daily.

Sorry for the very long post, I do appreciate so much, the care and concern, covet the prayers, and love love love all the good thoughts and warm hugs too:)

k❤

PS As far as Clinical Trials, I have checked into them several times, with my Seattle doctor (I did eventually get into a very well known and poplular doctor at the Swedish Hospital a couple years ago and check in with him from time to time, for second opinons on chemo etc. He is not aggressive and told me several times that I have had adequate surgery) and I don't qualify ever, because of insurance, distance and condition. In Japan, I am completely ruled out, because I am not Japaneses. My lack of Japaneseness pollutes the number. You have to understand Japan to get this one...

paris11 said:

Hi Teresa
July 2010. I had one enlarged para aortic node. Onc treated with 18 weeks IP. No progression.

Best luck,

Connie

Tina Brown said:

Hi Kathleen
I have just logged onto the ovarian site and have noticed your post. I am sorry you are having a tough time of it. Our cancer is a hard bugger to pin down and kill off. It is not fair, why can't they find a chemo that can KILL it all?

I will think and pray for you and hope you soon find a treatment that work.

Love Tina xxxx