Topotecan

Shiela

Hello,

I'm starting treatment with Topotecan tomorrow. My doctor said it's fairly easy to tolerate. If anyone has experience with this drug, I'd love to hear from you.

Kind regards,

Shiela

antcat

My experience with Topotecan
Hi Shiela, I had started Topotecan in April and only had 2 cycles of it. I found it to not be an easy treatment. My blood counts were very affected, particularly my white blood, hemoglobin and platelets. I became borderline anemic and so far my hemoglobin still hasn't risen to the normal level, and I've been off of the topotecan for a month now.The chemo nurses told me where I go that Topotecan is a rough treatment as well as Gemzar. And, the Topotecan didn't really help me. My tumors had some growth so the dr. decided to change the treatment. I was glad because the Topotecan also made me very, very tired. But my primary dr. told me the tiredness was due to my being somewhat anemic.

I'm not trying to be a downer with this treatment, this is how it affected me. I would just suggest that when you start this treatment to try and rest as much as possible.I also now developed nose bleeds. I'm not sure if this is a side effect from the Topotecan being so strong or just if I've been on numerous chemos. Anyway, I hope all goes well for you.

Shiela

antcat said:

My experience with Topotecan
Hi Shiela, I had started Topotecan in April and only had 2 cycles of it. I found it to not be an easy treatment. My blood counts were very affected, particularly my white blood, hemoglobin and platelets. I became borderline anemic and so far my hemoglobin still hasn't risen to the normal level, and I've been off of the topotecan for a month now.The chemo nurses told me where I go that Topotecan is a rough treatment as well as Gemzar. And, the Topotecan didn't really help me. My tumors had some growth so the dr. decided to change the treatment. I was glad because the Topotecan also made me very, very tired. But my primary dr. told me the tiredness was due to my being somewhat anemic.

I'm not trying to be a downer with this treatment, this is how it affected me. I would just suggest that when you start this treatment to try and rest as much as possible.I also now developed nose bleeds. I'm not sure if this is a side effect from the Topotecan being so strong or just if I've been on numerous chemos. Anyway, I hope all goes well for you.

Topotecan
Hi antcat:

It sounds like Topotecan wasn't a good experience for you. I'm sorry to hear that. My doctor
told me it's fairly easy to tolerate, so who knows.....everyone responds so differently to these drugs.

I had my first infusion yesterday and haven't had any bad reactions yet, but I know that usually takes a few days.

Would you mind telling me what treatment your doctor gave you after the Topotecan.

Thanks so much for getting back to me.

I hope you are doing better now.

Shiela

jloe

Mine were very well tolerated
Shiela,
I've been at this battle now for 5 yrs and now on Alimta/Carbo every 3 weeks. I previously had 3 weeks Topo / 1 week off for 4 cycles. My blood counts were ok and no other side effects with the exception that I was a bit tired the next day only. No hair loss and it continues to grow. Pre-meds were decadron (steroid) and Reglan (anti-nausea). I've had my spleen removed so that helps with the red count (not sure why). All the other anti-nausea meds cause severe constipation for me. After the Topo the scan showed slight progression but not much and a new small lession. Overall, I did not have too much interuption with a regular schedule. Hope this helps but you know how different we all can be. J

antcat

Shiela said:

Topotecan
Hi antcat:

It sounds like Topotecan wasn't a good experience for you. I'm sorry to hear that. My doctor
told me it's fairly easy to tolerate, so who knows.....everyone responds so differently to these drugs.

I had my first infusion yesterday and haven't had any bad reactions yet, but I know that usually takes a few days.

Would you mind telling me what treatment your doctor gave you after the Topotecan.

Thanks so much for getting back to me.

I hope you are doing better now.

Shiela

To Shiela, my treatment after Topotecan
Hi Shiela, After the Topotecan the dr. put me on Taxotere once a week for 3 weeks in a row then a week off. I originally had Taxotere when I was first diagnosed but I was on a 1 week on and 2 weeks off schedule and I tolerated it good with no bad side effects. At the time I was also on Carboplatin with the Taxotere but have since developed an allergic reaction to the Carbo so I can't get that now. I did, when I was originally on Taxotere go into a remission, but that was also when I had my surgery and the tumors were removed. When I went on Taxotere the 2nd time, I also had surgery to remove the tumors and also went into a remission for a year. I'm not sure if chemotherapy alone will shrink or get rid of tumors but all I can do is try. Hope all goes well for you. I found with the Topotecan I was feeling good the day of chemo and day after and I thought this was great. But, then the 2nd day after getting the Topotecan I got very tired and had no energy and that lasted for about a week and that's when my counts went down. But, everyone is different and it may not affect you this way. I've been on different chemo drugs since last year so maybe it's just catching up with me. Good luck and if I can help you with anything else, I will.

kayandok

Hi Shiela,
I've been on irenotecan, which is apparently the same thing as topo, for almost 2 months. I find it easy to tolerate, although I get a bit of nausea on day 2. Nothing meds don't take care of. I don't get steriods in my pre-meds, only aloxi and then also take the emend pill. The first month, the CA held steady, but not sure if I will continue or not.

I hope this works for you,
kathleen

jloe

kayandok said:

Hi Shiela,
I've been on irenotecan, which is apparently the same thing as topo, for almost 2 months. I find it easy to tolerate, although I get a bit of nausea on day 2. Nothing meds don't take care of. I don't get steriods in my pre-meds, only aloxi and then also take the emend pill. The first month, the CA held steady, but not sure if I will continue or not.

I hope this works for you,
kathleen

Similar schedules
Kathleen,
We have a similar timeline and schedule of treatments. We just keep plugging along don't we? I think Maria and couple of others are almost the same. Chemo - "The gift that keeps on giving." :):):)

Shiela

antcat said:

To Shiela, my treatment after Topotecan
Hi Shiela, After the Topotecan the dr. put me on Taxotere once a week for 3 weeks in a row then a week off. I originally had Taxotere when I was first diagnosed but I was on a 1 week on and 2 weeks off schedule and I tolerated it good with no bad side effects. At the time I was also on Carboplatin with the Taxotere but have since developed an allergic reaction to the Carbo so I can't get that now. I did, when I was originally on Taxotere go into a remission, but that was also when I had my surgery and the tumors were removed. When I went on Taxotere the 2nd time, I also had surgery to remove the tumors and also went into a remission for a year. I'm not sure if chemotherapy alone will shrink or get rid of tumors but all I can do is try. Hope all goes well for you. I found with the Topotecan I was feeling good the day of chemo and day after and I thought this was great. But, then the 2nd day after getting the Topotecan I got very tired and had no energy and that lasted for about a week and that's when my counts went down. But, everyone is different and it may not affect you this way. I've been on different chemo drugs since last year so maybe it's just catching up with me. Good luck and if I can help you with anything else, I will.

Topotecan
Thanks to all for sharing their experiences with Topotecan. So far, I've had minimal side effects. It's always interesting to read how we're all so different in how we respond to the drugs in terms of side effects and results.

It doesn't sound like Topotecan has been very effective in shrinking tumors.

My doctor mentioned Taxotere but that seems to not be an option now.

Best of luck to all.

Mary

fellinimom

Shelia - curious how you are
Shelia - curious how you are doing with topotecan? I started last week and the side effects have been minimal. My biggest problem is I'm more constipated than I had been before I started treatment. Doctor told me to eat more green leafy veggies and I'm taking pericolace every day too. Won't know how it's working until September, but I hope it prevents the tumor from growing at the least and hopefully shrinking it.