Nobody out there has used Topotecan? Little response to post

[jcawork]

I posted asking for feedback, but only one person repsonded. Anybody out there have experience with it?

Thanks,

Jen

[karen335]

Jen,

I wish I could help you. I am saddened that your not getting more responses. I have not experience this chemo. I had Taxol/Carboplatin and radiation. Post your question in the General section, maybe you'll get more response. Just a suggestion. Prayers for you each day...

God Bless and gentle hugs,

Karen

[nancy c]

I'm sorry I can't help either. My husband has been given 9 different chemo drugs over 18 months and none of those was the one you are asking about. Take care,God bless,Nancy C

[Maryanne]

Hi Jen,

I know you are probably getting very frustrated not getting an answer to your question. I also cannot help you has Joel is on carbo/Taxol. But hopefully, someone out there went through that particular chemo.and can answer your question.

Have you tried asking the expert, maybe they can give you some light on that.

Prayers always sent your way.

Maryanne

[DebsSky]

Hi Jen:

Can't be much help, but my Mom's onc. said if she were to relapse within three months that Topo. would be his chemo. of choice for her. He also said that if there is a relapse three+ months post, that he would go back to Cisplat/VP-16 for her.

Sorry I couldn't help you much, but Mom's onc had a lot of good things to say about Topo.

Good luck to you and I hope you get some "user" replies,

Deb

[Roseymac]

Jen, My husbands experiance wasn't good with topo, as for side effects,it knocked his counts down really low and he couldn't continue with it the way he should have. But he felt fine with it as he did with all the chemos's. They did start him on camptostar which I think is in the same drug family.

I know several people on here have not had a problem with it and it worked really well on the mets.

Rosemary

[kitkathi]

Jen,

My dad just finished his 2nd round of Topotecan. His counts have been fine and is only suffering a little bit of fatigue. He is getting scanned in less than 2 weeks. I'll let you know how the scans turn out. His oncologist said that she has had great results with it so we are crossing out fingers.

Kitkathi

[daggiesmom]

Jen,

I think I read that this drug is the latest choice for second line chemo for sclc. I hope your feeling better. Maybe the ask the experts section can help you on this?

Joanie

[loyork]

Jen,

My husband Chris was diagnosed 8/04 with Ext. SCLC w/ 4 brain mets. Had 35+ WBR, chemo, lung radiation. All gone. 6 weeks later, 24 brain mets, cloudy lung. Topotecan started. After 2 sets of Topo, innumerable brain mets. No mets anywhere else. Passed away April 26th, 2005. His course was much different than yours. His Onc. has said that Topo works very well on some people. I pray with all my heart it works for you.

Lori

[SDianneB]

Jen, I have no "experience" to speak of, having only 1 week of Topotecan behind me. I'm in a study for FDA approval of the oral form, so I took the pills last week, off this week, and another 5 days of pills next week, then scans the next to see if there is any progress.

Not that it will stay this way, but I just got back this morning from having my blood counts checked and after 1 week of Topo, the Onc. says my counts are terrific -- never would guess something was trying to zap them! This week, it's my job to fill up with proteins, drinking lots of chocolate milk with Boost in it, and stuff like that. With any luck, I can hold even and they won't go too low, but one never knows. My weight loss finally tapered off too -- I'd been dropping 8-10 lbs a week (needed to lose weight, but NOT that way!) and I only lost 4 lbs in a little over 2 weeks.

I felt lousy only one day, and then figured out a better schedule -- getting up really early and eating yogurt and a banana or something like that, then waiting at least an hour, then taking the Topotecan pills. During the middle of the day, I'd just drink the chocolate milk & Boost (yummy!), then could eat later in the day with no problem. (I'm not exactly having N&V from this -- it's the anorexic element of this disease that I wrote about previously that was causing me problems with food, but I think I'm through the worst of that now.)

So, I feel better about it all mentally now, and that is helping the physical a great deal. I am full of energy today -- was glad to get back to work after a long weekend, and somewhat back to "normal." Keeping in the back of my mind at all times what the Topo is doing FOR me.

Di

[LynneH]

Hi Jen,

Jim started Topotecan in Oct '04 immediately following other types of treatment so he was certainly not in his prime physically when he started it.

They tried the 5 days on, 2 weeks off. Counts dropped too drastically. Switched to a 4 day cycle, then 2 weeks off. Still harsh on counts but tolerable with procrit/neupogen/transfusions.

November showed 25% shrinkage in adrenal tumor. Jan's scan showed stable. Counts couldn't take the beating anymore, so switched to 1 day a week, every week. Total dosage the same but hoped to tolerate it better.

His scan the 1st week in March showed that the adrenal had grown significantly so he would have been taken off of Topotecan but that was also the same week that he started his decline due to the brain met.

Neither Jim nor his doctor had been interested in scanning for brain mets since May '04 so I had quit nagging about that. I believe by the time he showed neurological symptoms in March '05 that the tumor was probably quite large and I do know his was in the center of the brain, the brain stem.

Bottom line (in my opinion) is that I think Topotecan did do some good for Jim but the brain met was not able to be tackled at it's advanced stage.

Jim would tell you that he would do it all over again.

I didn't want to post anything negative so didn't reply initially, but I understand your craving for information as I always wanted to know everything possible. But again, everyone responds so differently and I think you have an excellent chance of getting good results from all that I have heard.

In fact, one of Jim's chemo nurses that worked in a hospital in addition to our Doctor's office said that they were just now starting to do the Topotecan at the hospital and that Jim's doctor was ahead of the game.

I'm thinking wonderful thoughts for you,

Lynne

[bbw1]

Hi Jen,

Sorry I didn't see your original post. I was on Topotecan after Taxol. I took 2 rounds of 6 treatments that were administered weekly. I had a 3 week break in between the 2 treatments. Topotecan continued to keep the disease stable so far. I had very little side effects from it. My hands would get hot and the neuropathy in my feet would intensify. I had no problems with my blood counts either.

Praying for positive results for you.

Blaine

[palm]

I used topotecan as part of a clinical trial, along with radiation Tx, 2 times/day for three weeks. After that, and four rounds of chemo (Cistplatin & Epotoside) the tumor in my lung vanished!!! I have limited sclc, diagnosed August of 04.

[didier]

hi,

sorry, i just saw your post. my dad received topotecan as second line treatment. unfortunatley his counts were down and he developed infections so the treatment was discontinued. by the time the infection was under control and the counts were okay it was too late to continue w/treatment because the disease had spread so much. it was hoped the topo would slow the progression, but we didn't get much of an opportunity to see how helpful it may have been, at the first sign of infection, jump on it. my dad was a little too stoic for his own good and ignored the infection and didn't tell me about it until it was essentially too late. a simple oral antibiotic would have possibly treated it, but by the time i figured out what was going on he had to be hospitalized for a week here and there -- all of which was time that he couldn't take treatment. the lost time surely didn't help. he lost his battle after a ten month fight. i hate cancer and i really hate the tobacco companies.

i wish i could tell you something helpful. i'm sorry you have to go through this.

[Ann]

Jen, Dennis was given Topetecan as a second line chemo. The topetecan seemed to really drag him down. He required blood transfusions and was always battling low blood counts. I feel this chemo was very draining on his system. Hope you have better luck, It seems as many that responded to your post did well, so I hope you're going to do well also.