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Ovarian Cancer Chemotherapy - Topetecan
I posted here a few days ago and forgot to include some information. My wife was diagnosed with Stage III ovarian cancer at the very end of 1999. She's had three recurrences, the most recent just diagnosed. She's been on the platinum based drugs as first line therapy, then taxol alone and then doxil. She has now just started on Topetecan. She's now had 4 treatments (1 per week). The doctor indicated if this works that he would continue the treatments for probably about 6 months. If it doesn't work, of course he'd switch to another drug.
He has indicated that the response rate with Topetecan is 30 - 40%. Biggest side effects are blood count levels and fatigue. She is also on Procrit and Neupogen for the blood counts. After the first Topetecan, he blood counts plummeted and she needed a transfusion. The fatigue is getting bad.
Does anyone have experience with this drug and how bad does the fatigue get. The nurse told me that she's surprised that my wife still wants to go out after 4 treatments and that the fatigue will get much worse. I'd appreciate any comments about this drug or any comments in general. Sometimes it's good just to be able to share with others.
Chuck
He has indicated that the response rate with Topetecan is 30 - 40%. Biggest side effects are blood count levels and fatigue. She is also on Procrit and Neupogen for the blood counts. After the first Topetecan, he blood counts plummeted and she needed a transfusion. The fatigue is getting bad.
Does anyone have experience with this drug and how bad does the fatigue get. The nurse told me that she's surprised that my wife still wants to go out after 4 treatments and that the fatigue will get much worse. I'd appreciate any comments about this drug or any comments in general. Sometimes it's good just to be able to share with others.
Chuck
Welcome to the forum. This is a very old thread. It might be a good idea to start a new one. God Bless you too.
Hi, Chuck! I am an ovarian cancer survivor. I was diagnosed at Stage IIIc just over seven years ago. After the initial surgery (they took everything from the cervix up ) and six rounds of Taxol and Carboplatin, my CA-125 went to 6 and then below 5. It stayed there for about 3.5 years. Then I went to work full time in a stressful job. My CA-125 started to go up within six weeks. I tried to beat it on my own, but I had to quit the stressful job and was unemployed for about six months, fighting my employer for unemployment insurance payments (I eventually won), and discovered that financial stress is also not good.
So I had surgery to remove three malignant lymph nodes in my right and left groin late in 2006. I did chemotherapy again, same regimen, except that I developed a life-threatening reaction to carboplatin, so I only got Taxol the last three of the six treatments. My CA-125 got down to 16/17. I worked part-time through half of 2007 but the financial problems were multiplying, and I picked up a second part-time job in the summer. Within 4 weeks, my CA-125 began to rise again. I got into a clinical trial for Faxlodex, monthly injections and bimonthly ct-scans. After six months, it was working. There were eight spots they were following and all had stabilized or reduced. But then they found a golf ball size mass between my vagina and bladder. It was growing and beginning to attach to the pelvic wall.
They put me back into chemo with Taxol but this time, it was weekly treatments at lower doses with six weeks on and one week off. Initially, we scheduled 12 treatments like this. And I quit one of my two part-time jobs. The golf ball shrank to a marble. During this time, I developed lymphedema in my right leg. Chemo made it worse every week while physical therapy and bandaging helped. But they will only treat you so long for lymphedema, so they cut me loose despite my doctor's desire for me to continue with the massages, which helped.
The mass got down to a firmness, and then I developed cellulitis (infection) in the right leg. When oral antibiotics were only minimally effective, I was hospitalized for two nights for IV antibiotics every four hours. Then heavy antibiotics for 3 weeks and then a 3-month course of low-dose antibiotics. The good thing was that the infection brought me a five-week break in chemo, and my CA-125 continued to drop (to 17) while I was off chemo. I was ecstatic!
Because the doctor could still feel the "firmness", we went with another six weeks of chemo (treatments 24-30 of weekly chemo). But this time, my CA-125 went up to 25. We began a second six weeks (last week was #5), and my CA-125 went up to 30. Today, we switched to Topetecan.
I have to admit that what I've read here is a bit frightening. The nurses at the U of MN's Masonic cancer center said they have seen good results and very little bad news, but I have been told that Topetecan is much harder on blood counts than Taxol, so I'm concerned about that. But I'm hopeful that this drug will reverse the trend and bring my CA-125 down. The last ct-scan they did showed no sign of cancer but it did show a lesion on my liver that was noteworthy.
I know that stress is a big factor in my CA-125. When it rose from 17 to 25, I was dealing with a bankruptcy hearing the following week. Two weeks ago when it rose from 25 to 30, I was in the midst of a very stressful battle going on in my neighborhood. I am looking at how I can reduce stress, and I am taking that seriously (although it's hart not to get involved in the neighborhood stuff). I have spent the last nine months, except for five weeks with the infection, doing weekly chemotherapy. I've struggled with fatigue, nausea, constipation or (more often) diarrhea, and recently with bouts of shivering when my body has a hard time regulating my temperature--it has dropped as low as 94.5 at these times. I kept telling myself that I would get back on track when chemotherapy was over (after all, it was only 12 weeks in the beginning). I have decided I can no longer wait for it to be over. I have to get back on track now.
I am an optimist. I love my life, my part-time job. It looks like my house is going into foreclosure. Bankruptcy will be final in another month or so. My credit rating (which was 800 before I got cancer) stinks. And I am challenged to let it all go, stop worrying and focus on getting healthy. That is a real challenge. But life has a way of working out. In the past, no matter how much I worried, I was always okay in the moment, and I have to remember that. Right now, I may feel a little spacey because I had chemo today, but I still have a roof over my head, food in the fridge and a part-time job that pays most of the bills. Right now, I am okay.
I will let you know how Topetecan goes for me, and I will follow what you and others report here. Best of luck and God bless to us all.
Dottie
So I had surgery to remove three malignant lymph nodes in my right and left groin late in 2006. I did chemotherapy again, same regimen, except that I developed a life-threatening reaction to carboplatin, so I only got Taxol the last three of the six treatments. My CA-125 got down to 16/17. I worked part-time through half of 2007 but the financial problems were multiplying, and I picked up a second part-time job in the summer. Within 4 weeks, my CA-125 began to rise again. I got into a clinical trial for Faxlodex, monthly injections and bimonthly ct-scans. After six months, it was working. There were eight spots they were following and all had stabilized or reduced. But then they found a golf ball size mass between my vagina and bladder. It was growing and beginning to attach to the pelvic wall.
They put me back into chemo with Taxol but this time, it was weekly treatments at lower doses with six weeks on and one week off. Initially, we scheduled 12 treatments like this. And I quit one of my two part-time jobs. The golf ball shrank to a marble. During this time, I developed lymphedema in my right leg. Chemo made it worse every week while physical therapy and bandaging helped. But they will only treat you so long for lymphedema, so they cut me loose despite my doctor's desire for me to continue with the massages, which helped.
The mass got down to a firmness, and then I developed cellulitis (infection) in the right leg. When oral antibiotics were only minimally effective, I was hospitalized for two nights for IV antibiotics every four hours. Then heavy antibiotics for 3 weeks and then a 3-month course of low-dose antibiotics. The good thing was that the infection brought me a five-week break in chemo, and my CA-125 continued to drop (to 17) while I was off chemo. I was ecstatic!
Because the doctor could still feel the "firmness", we went with another six weeks of chemo (treatments 24-30 of weekly chemo). But this time, my CA-125 went up to 25. We began a second six weeks (last week was #5), and my CA-125 went up to 30. Today, we switched to Topetecan.
I have to admit that what I've read here is a bit frightening. The nurses at the U of MN's Masonic cancer center said they have seen good results and very little bad news, but I have been told that Topetecan is much harder on blood counts than Taxol, so I'm concerned about that. But I'm hopeful that this drug will reverse the trend and bring my CA-125 down. The last ct-scan they did showed no sign of cancer but it did show a lesion on my liver that was noteworthy.
I know that stress is a big factor in my CA-125. When it rose from 17 to 25, I was dealing with a bankruptcy hearing the following week. Two weeks ago when it rose from 25 to 30, I was in the midst of a very stressful battle going on in my neighborhood. I am looking at how I can reduce stress, and I am taking that seriously (although it's hart not to get involved in the neighborhood stuff). I have spent the last nine months, except for five weeks with the infection, doing weekly chemotherapy. I've struggled with fatigue, nausea, constipation or (more often) diarrhea, and recently with bouts of shivering when my body has a hard time regulating my temperature--it has dropped as low as 94.5 at these times. I kept telling myself that I would get back on track when chemotherapy was over (after all, it was only 12 weeks in the beginning). I have decided I can no longer wait for it to be over. I have to get back on track now.
I am an optimist. I love my life, my part-time job. It looks like my house is going into foreclosure. Bankruptcy will be final in another month or so. My credit rating (which was 800 before I got cancer) stinks. And I am challenged to let it all go, stop worrying and focus on getting healthy. That is a real challenge. But life has a way of working out. In the past, no matter how much I worried, I was always okay in the moment, and I have to remember that. Right now, I may feel a little spacey because I had chemo today, but I still have a roof over my head, food in the fridge and a part-time job that pays most of the bills. Right now, I am okay.
I will let you know how Topetecan goes for me, and I will follow what you and others report here. Best of luck and God bless to us all.
Dottie
My wife's CA125 was 177 before they started the chemo with Topotecan 4 weeks ago. They will be retesting the CA125 in the next couple of weeks. This is her 3rd recurrence and the drug seems to be taking a toll on her from a fatigue standpoint. She's also fluctuating between constipation and diaherra. The way that she is reacting, it seems to me that she may soon need another transfusion. She's being infused with the Topotecan once a week for 30 minutes. The oncologist says that he will continue this for 6 months. Diane has a golf ball size tumor in the abdomenal region near the colon. Although there are many drugs that can be tried, it really depends on how much chemo your body can take. She's already had the platinum based drugs, taxol, doxil, and now topotecan.
Leslee is going to be doing a Topotecan { Hycamtin }+ Lapatinib { Tykerb } for a clinical trial, Level 2 , takes the pill daily, and 20 minute infusion 3 times per month. they told her the worst side affects could be in the bone marrow. She has 3 small lesions on the abd wall, 1st recur at 4 1/2 months, stage 3 . Main worry I have is the reputation of the company, GSK funding the trials, seems that they have had many law suits. Her infusions are on the 1st, 8th and 15th for 6 months, will evaluate every 2 months. Last CA125 was 72.
Chuck,
When I asked the Chemo nurse yesterday about fatigue, she indicated that it should just go with the cycle. For me probably the week after my treatment and then I should rebound the next week. I sure hope that is the case as we are going on a cruise on April 21 and I do not want to be dragging around that week. I have really felt pretty good throughout my whole ordeal. I did not ask yesterday about my last CA125 - I will wait until I see the Doctor next week. I am hoping since it went down (only 20) after the first one it will continue with the downward trend.
If you do a Google search on Topotecan and Thallidomide you can see several articles on the combination. It seems that every place has their different versions of treatment. Kind of confusing?
This is my first recurrance. I was rather disappointed to back at chemo after only 4 months. It is good to hear that you wife is still fighting the battle after 5+ years.that
When I asked the Chemo nurse yesterday about fatigue, she indicated that it should just go with the cycle. For me probably the week after my treatment and then I should rebound the next week. I sure hope that is the case as we are going on a cruise on April 21 and I do not want to be dragging around that week. I have really felt pretty good throughout my whole ordeal. I did not ask yesterday about my last CA125 - I will wait until I see the Doctor next week. I am hoping since it went down (only 20) after the first one it will continue with the downward trend.
If you do a Google search on Topotecan and Thallidomide you can see several articles on the combination. It seems that every place has their different versions of treatment. Kind of confusing?
This is my first recurrance. I was rather disappointed to back at chemo after only 4 months. It is good to hear that you wife is still fighting the battle after 5+ years.that
Hi Annie,
I'm happy to hear that this seems to be working for you. Is this your first recurrence? This is my wife's third and it's been a long fight for her. You're really the first person I've heard from the the Topotecan seems to be working. You are however also taking Thalidomide which I've not heard of mixing with Topotecan before. I'll have to mention this to the oncologist. Please let me know how you're doing and I'll update you on my wife Diane.
Diane's oncologist is using the Topotecan once a week and not the five days as I've seen on the internet. He says that it's easier on the blood. With the effect it's had on her blood however, I'd hate to see what would happen if she was taking it for five consecutive days. Again, please let me know how things are going.
Chuck
I'm happy to hear that this seems to be working for you. Is this your first recurrence? This is my wife's third and it's been a long fight for her. You're really the first person I've heard from the the Topotecan seems to be working. You are however also taking Thalidomide which I've not heard of mixing with Topotecan before. I'll have to mention this to the oncologist. Please let me know how you're doing and I'll update you on my wife Diane.
Diane's oncologist is using the Topotecan once a week and not the five days as I've seen on the internet. He says that it's easier on the blood. With the effect it's had on her blood however, I'd hate to see what would happen if she was taking it for five consecutive days. Again, please let me know how things are going.
Chuck
Chuck,
I will be starting my 3rd topotecan treatment tomorrow. I get it 5 doses M-F and then have 2 weekss off. I am also taking a 100 mg talidomide tablets along with the topo. My CA 125 had gone down before the 2nd treatment and hope it made a bigger drop in the one they took on Thrusday.
This treatment was a study that they had done at the U of M and found that worked well for many women. I started with 100mg of the thalidomide and upped it to 200mg after one week.My only problem with it was that my hands got very shakey so they dropped it back to 100 again. So far I have been feeling OK. I also have been getting a Nuelasta shot on the Saturday after my treatment week. I have to give it to myself because it is on a Sat and itt was quite traumatic the first time but was not bad at all.
I had finished my first round of carbo/taxol the end of October 2006 and my numbers started going up again so it was time to get back to the chemo again.
I will be starting my 3rd topotecan treatment tomorrow. I get it 5 doses M-F and then have 2 weekss off. I am also taking a 100 mg talidomide tablets along with the topo. My CA 125 had gone down before the 2nd treatment and hope it made a bigger drop in the one they took on Thrusday.
This treatment was a study that they had done at the U of M and found that worked well for many women. I started with 100mg of the thalidomide and upped it to 200mg after one week.My only problem with it was that my hands got very shakey so they dropped it back to 100 again. So far I have been feeling OK. I also have been getting a Nuelasta shot on the Saturday after my treatment week. I have to give it to myself because it is on a Sat and itt was quite traumatic the first time but was not bad at all.
I had finished my first round of carbo/taxol the end of October 2006 and my numbers started going up again so it was time to get back to the chemo again.
Dear Chuck:
Just to let you know that I also find it odd that the Doctor will have to wait for eight(8) treatments before getting the CA 125. I hope all the best for your wife and find it wonderful for all of us that we can live a very long life with this disease and not very much to consider it as life-threatening but just plain chronic. Thanks for posting.
Jatoo
Just to let you know that I also find it odd that the Doctor will have to wait for eight(8) treatments before getting the CA 125. I hope all the best for your wife and find it wonderful for all of us that we can live a very long life with this disease and not very much to consider it as life-threatening but just plain chronic. Thanks for posting.
Jatoo
Dear Chuck:
I am not sure whether your wife is platinum resistant. By the mere fact that she has survived more than five(5) years and is now even close to eight(8) years, Taxanes and Platinum drugs were really working for her. Try asking drugs similar to Taxol like Taxotere ( which Helmar is using and suggesting) or Abraxane ( a form of Taxol but less toxic) from your doctor.
Jatoo
I am not sure whether your wife is platinum resistant. By the mere fact that she has survived more than five(5) years and is now even close to eight(8) years, Taxanes and Platinum drugs were really working for her. Try asking drugs similar to Taxol like Taxotere ( which Helmar is using and suggesting) or Abraxane ( a form of Taxol but less toxic) from your doctor.
Jatoo
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