PET/CT shows progression:(

lindaprocopio

poopergirl14052 said:

come to the states
for another opinion maybe Two head are better than one. I am sure you would qualify for assistance. Hope you are feeling fine. I would not go for option # one. You must keep up the fight and get better,please..val

I missed this post, as I was just coming back from vacation...
(((((Kathleen))))). I am also making my journey parellel to yours, and am in the same place where my chemo oncologist seems to almost have run out of tricks and I'm in a scramble to find something else. This spring, when my latest CT/PET showed disease progression on the 4th chemo drug in a row, he asked me bluntly "What do you want to do here?" I replied "I just want to have a nice spring and summer. Chemo doesn't seem to work for me anymore, and I'm unwilling to take anything that makes me feel horrible." I'm a fighter, so to find myself at this juncture with this attitude surprises even me. But that's what I wanted; time to work in my garden and swim in my new pool, go away for a nice vacation, and enjoy the sun on my face. My CA125 was over 4000 at that time, and climbed to 8500 before I did the liver radioembolization June 1st. But I had/have no symptoms and feel great, and I just needed a break from chemo and treatments and I don't regret giving myself the summer off.

I understand totally your discomfort at being totally 'out of treatment' when it is not really safe to be on a chemo break. Before that meeting with my chemo-onc last spring I found a study that showed that a combination of oral tamoxifen and megace held 28% of even ER- and PR- women STABLE, and I shared that with my chemo oncologist, and that is what I have been taking for the past 13 weeks. Just pills and no side effects for me. Easy easy, & perhaps that is an option for you now. I looked on it as a long shot, but I am so chemo refractory now that topotekan or gemzar both are long shots for me too, expecially since my blood counts tank immediately after infusions now. And these estrogen/progesterone blockers did give me something to be taking while on my 'spring break'. (I take two 20 mg tamoxifen daily continuously, and add to that every other week five 40 mg megestrol daily on alternate weeks. I can find that study if you are interested.) I had a CT scan July 12th just before I went to the beach and don't have the full path report yet, but was told that my cancer outside my liver looked stable (and the radioembolism apparently made "remarkable improvement" in knocking back my liver mets.) So maybe the long shot paid off; I'll let you know when I get the pathology.

I know that you will keep turning over rocks to find a new treatment to try. I feel the radioembolism really bought me some time. When I said I wanted a nice spring and summer, I honestly thought that was the time I probably had left. My CA125 climbed to 8500 before my radioembolism and is about 2600 even now, pretty scary numbers. But still symptom-free; wierd, huh? And yet I feel I'll be here for Christmas now, even with no solid treatment plan anywhere on the horizon. One day at a time. Mid-August I'll get the other half of my liver radioembolized, and then I'll go back to my chemo-onc and probably try the topotekan or the gemzar. But I'm not committed to that even. I've gotten strangely used to being out of treatment, as the months roll by, and it's not nearly as scary anymore. I haven't given up; my confidence and hope now are just re-centered on riding this out my own way and figuring it out as I go.

((((Kathleen)))). Long post. I just wanted you to know you are not alone in this place.

antcat

lindaprocopio said:

I missed this post, as I was just coming back from vacation...
(((((Kathleen))))). I am also making my journey parellel to yours, and am in the same place where my chemo oncologist seems to almost have run out of tricks and I'm in a scramble to find something else. This spring, when my latest CT/PET showed disease progression on the 4th chemo drug in a row, he asked me bluntly "What do you want to do here?" I replied "I just want to have a nice spring and summer. Chemo doesn't seem to work for me anymore, and I'm unwilling to take anything that makes me feel horrible." I'm a fighter, so to find myself at this juncture with this attitude surprises even me. But that's what I wanted; time to work in my garden and swim in my new pool, go away for a nice vacation, and enjoy the sun on my face. My CA125 was over 4000 at that time, and climbed to 8500 before I did the liver radioembolization June 1st. But I had/have no symptoms and feel great, and I just needed a break from chemo and treatments and I don't regret giving myself the summer off.

I understand totally your discomfort at being totally 'out of treatment' when it is not really safe to be on a chemo break. Before that meeting with my chemo-onc last spring I found a study that showed that a combination of oral tamoxifen and megace held 28% of even ER- and PR- women STABLE, and I shared that with my chemo oncologist, and that is what I have been taking for the past 13 weeks. Just pills and no side effects for me. Easy easy, & perhaps that is an option for you now. I looked on it as a long shot, but I am so chemo refractory now that topotekan or gemzar both are long shots for me too, expecially since my blood counts tank immediately after infusions now. And these estrogen/progesterone blockers did give me something to be taking while on my 'spring break'. (I take two 20 mg tamoxifen daily continuously, and add to that every other week five 40 mg megestrol daily on alternate weeks. I can find that study if you are interested.) I had a CT scan July 12th just before I went to the beach and don't have the full path report yet, but was told that my cancer outside my liver looked stable (and the radioembolism apparently made "remarkable improvement" in knocking back my liver mets.) So maybe the long shot paid off; I'll let you know when I get the pathology.

I know that you will keep turning over rocks to find a new treatment to try. I feel the radioembolism really bought me some time. When I said I wanted a nice spring and summer, I honestly thought that was the time I probably had left. My CA125 climbed to 8500 before my radioembolism and is about 2600 even now, pretty scary numbers. But still symptom-free; wierd, huh? And yet I feel I'll be here for Christmas now, even with no solid treatment plan anywhere on the horizon. One day at a time. Mid-August I'll get the other half of my liver radioembolized, and then I'll go back to my chemo-onc and probably try the topotekan or the gemzar. But I'm not committed to that even. I've gotten strangely used to being out of treatment, as the months roll by, and it's not nearly as scary anymore. I haven't given up; my confidence and hope now are just re-centered on riding this out my own way and figuring it out as I go.

((((Kathleen)))). Long post. I just wanted you to know you are not alone in this place.

Hi Linda
Hi Linda, I'm so glad you took a chemo break. I'm tempted to take one myself if this latest treatment of low dose weekly Taxotere doesn't work. You have wonderful confidence, I wish I did. I was wondering have you ever been on Hexalen. I heard that is an oral pill that was approved for ovarian cancer and is one of the older drugs? I know on my telephone support group several people were on this and got some type of remission. I asked my oncologist about this and he said it was an option if this current one didn't work.

Good luck and keep us posted on how you're doing.

lindaprocopio

antcat said:

Hi Linda
Hi Linda, I'm so glad you took a chemo break. I'm tempted to take one myself if this latest treatment of low dose weekly Taxotere doesn't work. You have wonderful confidence, I wish I did. I was wondering have you ever been on Hexalen. I heard that is an oral pill that was approved for ovarian cancer and is one of the older drugs? I know on my telephone support group several people were on this and got some type of remission. I asked my oncologist about this and he said it was an option if this current one didn't work.

Good luck and keep us posted on how you're doing.

I'll ask about Hexalon; thanks!
I'm at the point where my chemo-onc lets me try just about anything I mention, so thanks for the added option!

MK_4Dani

lindaprocopio said:

I'll ask about Hexalon; thanks!
I'm at the point where my chemo-onc lets me try just about anything I mention, so thanks for the added option!

To Linda and Kathleen
You both are in my thoughts and prayers.
Hugs,
Mary

Radioactive34

MK_4Dani said:

To Linda and Kathleen
You both are in my thoughts and prayers.
Hugs,
Mary

I will be praying and
I will be praying and thinking of you both.

mopar

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...

DEAR KATHLEEN AND LINDA
My heart goes out to you both. What a position to be in - to have to choose from such 'unappealing' options, and all else that you're dealing with.

Kathleen, I'm just curious - why is Japan your home? I've followed your posts and I can imagine that the back and forth is exhausting, not to mention expensive. Is your husband stationed there (in the military?). It's good, though that you have family in the states that supports you.

But to you both, I will continue my heartfelt prayers that you will have unending strength, and that options will keep coming your way.

Lots of love, hugs and prayers!
Monika