Started Topotecan and talked to doctor about progression today.
clamryn
Member Posts: 508
Well I am back from the doctor and it wasn't all bad.
1) I asked why I couldn't have the surgery to take it out and the doctor was very blunt with me. She said when they do a liver resection, that it is a very rough surgery and with my lungs the way they are, I would not be a good candidate. I totally agree.
2) I asked why I couldn't use the same chemo I was on before because on the last Pet/scan it showed where I had 30% reduction and did they think if I would have stayed on that chemo, would it have killed more cells. The doctor said they were gonna have to pull be off of it anyway because it was putting a strain on me. Which I really was tired and never really recouped. This new chemo will be easy to tolerate. The biggest thing I have to worry about is my platelet count and they keep a watch on that every week. They will do the blood work at their office, which is nice because I won't have to get stuck in the arm every week. They can go through my port. Thank goodness for small favors.
3) Good news..... I have no new spots and the other spots are gone. I only have the one that is giving me a fit and that is what showed progression. I feel a lot better about this. The girls were asking me if I had any anxiety and I said.... Well when Kim (nurse) called me last week, I had a meltdown but, I dug out my big girl panties and now I just have to get back into the ring and fight like hell. Climbing in and out of this ring, is the SHITS.
4) On this new chemo (Topotecan) I will go every week and then I will get a week off. I told them they are so lucky that they get to see my lovely face every week.
The doctor said that her and the other doctor (my main doc) were talking about me and how strong I am. Because of me fighting with the stupid lung disease. She said they never seen anyone like me.
She went to leave and was laughing of how big my file was. She said they have weeded it out already and they need to do it again. It is about 12 inches high. She said that is a good thing....I am still here. Hey...maybe I will go down in the medical history books.
CA125 number......42.....pretty big jump from 2. But not as bad as it could be.
Linda
1) I asked why I couldn't have the surgery to take it out and the doctor was very blunt with me. She said when they do a liver resection, that it is a very rough surgery and with my lungs the way they are, I would not be a good candidate. I totally agree.
2) I asked why I couldn't use the same chemo I was on before because on the last Pet/scan it showed where I had 30% reduction and did they think if I would have stayed on that chemo, would it have killed more cells. The doctor said they were gonna have to pull be off of it anyway because it was putting a strain on me. Which I really was tired and never really recouped. This new chemo will be easy to tolerate. The biggest thing I have to worry about is my platelet count and they keep a watch on that every week. They will do the blood work at their office, which is nice because I won't have to get stuck in the arm every week. They can go through my port. Thank goodness for small favors.
3) Good news..... I have no new spots and the other spots are gone. I only have the one that is giving me a fit and that is what showed progression. I feel a lot better about this. The girls were asking me if I had any anxiety and I said.... Well when Kim (nurse) called me last week, I had a meltdown but, I dug out my big girl panties and now I just have to get back into the ring and fight like hell. Climbing in and out of this ring, is the SHITS.
4) On this new chemo (Topotecan) I will go every week and then I will get a week off. I told them they are so lucky that they get to see my lovely face every week.
The doctor said that her and the other doctor (my main doc) were talking about me and how strong I am. Because of me fighting with the stupid lung disease. She said they never seen anyone like me.
She went to leave and was laughing of how big my file was. She said they have weeded it out already and they need to do it again. It is about 12 inches high. She said that is a good thing....I am still here. Hey...maybe I will go down in the medical history books.
CA125 number......42.....pretty big jump from 2. But not as bad as it could be.
Linda
0
Comments
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Linda....I'm sorry you have
Linda....I'm sorry you have to go thru this - again. With ovarian cancer, you always seem to feel like you never can catch a break. It is just the meanest, most hateful form of cancer.
Your CA125 is barely elevated, so that's one good thing. How long was the interlude, from 2 to 42?
I hope you are back to your old self soon.
Carlene0 -
sweet girlHissy_Fitz said:Linda....I'm sorry you have
Linda....I'm sorry you have to go thru this - again. With ovarian cancer, you always seem to feel like you never can catch a break. It is just the meanest, most hateful form of cancer.
Your CA125 is barely elevated, so that's one good thing. How long was the interlude, from 2 to 42?
I hope you are back to your old self soon.
Carlene
sorry you have to go back on chemo. What is wrong with your lungs?./keep up your spirit and faith and you will get through this..val0 -
Karenkaren1951 said:linda.....sounds like you
linda.....sounds like you are going in the right direction....i am really happy for you...the topotecan should be a breeze...i literally had no side effects from it.....take care...karen
Karen, I was so glad to hear that this chemo was so much more easier than the others. Hope you are doing okay...Linda0 -
CA125Hissy_Fitz said:Linda....I'm sorry you have
Linda....I'm sorry you have to go thru this - again. With ovarian cancer, you always seem to feel like you never can catch a break. It is just the meanest, most hateful form of cancer.
Your CA125 is barely elevated, so that's one good thing. How long was the interlude, from 2 to 42?
I hope you are back to your old self soon.
Carlene
Carlene, on Dec 28 I went to get my treatment and my CA125 had come back with a 2. I was like knocked off the chair because it had been running, 42 - 52. I thought someone made a mistake. My doctor stopped the current treatment of taxotere/carbo and ordered a Pet/scan. So I got a break until now. I had the pet/scan on Feb 16 and got the results last week and saw the doctor yesterday. On the phone last week they told me they wanted to switch to the topotecan.
To answer your question. Dec 28 CA125 reported a 2 and when I got the results yesterday, Feb 28 (2 months) reported in at 42. So my short-lived happy dance of having a 2 wasn't as long as I would have liked.
You are right about this being mean. It is such an up and down thing. But after going to the doctor yesterday...I am on the up.
Linda0 -
Valpoopergirl14052 said:sweet girl
sorry you have to go back on chemo. What is wrong with your lungs?./keep up your spirit and faith and you will get through this..val
Hi Val, I had a lung collapse in Dec 2007 and they found I had Interstial Lung Disease (never smoked in my life). So I have been dealing with this ever since. I am on oxygen sometimes when I need it. In Feb 2008 I went for my annual checkup and my CA125 was higher than normal but still in safe zone. I worried but doctor didn't. He said we would ride with it take again in a month. Well it elevated again and it got me going. He ordered an ultra sound and sure enough it warranted that he wanted to go in (surgery} and take a look. So my long remission of 17 years came to an end and I have been fighting ever since. To tell you the truth...the lungs deal me a fit more than the ovarian cancer. If I didn't have to deal with that....I would really kick this damn beast in its butt.
Linda0 -
YOU ARE AMAZING
What a fighter you are, Linda. I'm so sorry you're facing all of this, but you sure have a good attitude and much strength. I'm so glad to hear the hope in your words, because there is ALWAYS hope. Also good to hear that there are no new areas to be concerned with, and that the one area is diminishing.
Here's lots of hugs and prayers for you - keep us informed, please.
Monika0 -
Climbing back in the ring
I'm picturing Big Girl Panties and boxing gloves....... hmmmm
.... could be an excellent look for you. Seriously, this IS the shits, but we're here and the rock stars of our GYN/ONC offices. I'll be cheering you on and waiting to see how that topotecan works for you. I assume that will be the next drug in the pipeline for me.
((((HUGS)))) Maria0 -
LindaMwee said:Climbing back in the ring
I'm picturing Big Girl Panties and boxing gloves....... hmmmm.... could be an excellent look for you. Seriously, this IS the shits, but we're here and the rock stars of our GYN/ONC offices. I'll be cheering you on and waiting to see how that topotecan works for you. I assume that will be the next drug in the pipeline for me.
((((HUGS)))) Maria
I hope you beat cancer's butt with the new chemo!
Kelly0 -
Have you reviewed the sidelovesanimals said:Linda
I hope you beat cancer's butt with the new chemo!
Kelly
Have you reviewed the side effects of topotecan (interstitial lung disease is on the list) & discussed with your doctor? The risk appears to be greater in those who already have lung disease. Just wondering...0 -
Linda,
sorry to be jumping on so late. I was thinking about you today, and went looking for your posts. I see that your last chemo was carbo/taxotere (same one I just started).
How many doses of topo have you had? Has the CA come down at all? Post an update when you have a chance.
Warm hugs to you today,
kathleen0
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