Topotecan - Need Feedback

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Hi All,
My dad's cancer has grown significantly. I need to get with the NP or onc to see what the real deal is. I missed the appt. my dad had with the nurse practitioner. My mom had an appt. with the rad onc at the same time.

My dad is going to be given Topotecan. I need to know your experiences with this drug. I need to know what kind of quality of life that my dad can expect.

Thanks,
Kristi

11 replies

Hello Kristi:

My dad had Topotecan as his second line of treatment. Keep in mind, this is just my dad's experience...others might have a different story to tell. It did nothing for his cancer - it continued to grow and spread, but it made him very ill. He had a terrible time with blood counts, plateletes, many transfusions, dehydration, extreme fatigue, not eating at all. I always thought that if Topotecan did to dad's cancer what it did to his body, then he'd still be here today. In the end, it was found that dad's cancer was resistant to any type of chemo. He was in the middle of his third line of treatment when he got a staph infection and it was all down hill from there. His cancer was still growing even with a third line of treatment and was coming back in his brain.

I have heard others' stories and they have had good results with Topotecan, so again, since you asked, I told you of my dad's experience. I am sure someone will write with a positive experience.

Good luck to your dad! I will pray for him.

Cheryl

Thanks, Cheryl! I really need to hear the good and the bad regarding this drug. I remember the nurse practitioner telling my Dad and I back in August that Topotecan would make his counts drop. My dad had issues with Carboplatin and VP-16 and low counts. It was a horrible experience.

Kristi

Hi Kristi~
Mine isn't the most positive response either, but I'm hoping that, if anything, it will help you know what to watch for.
My mom also had Topotecan as her second line of treatment. After 2 cycles, a PET Scan showed new growth. She also needed a blood transfusion at that time. Keep an eye on hemoglobin levels (anemia). The symptoms of anemia can include headache, fatigue, weakness, difficulty in thinking. With severe anemia, other symptoms, such as shortness of breath and rapid heartbeat, may be experienced.
I pray that Topotecan destroys your Dad's cancer! I also hope that you will hear some positive stories soon! I wish you all the best.
Kelly

Thanks Kelly! My dad had two blood transfusions during three rounds of Carbo/VP-16 so I am well aware of the signs of anemia unfortunately. My dad has never mentally recovered from the 10 radiation treatments and three rounds of Carbo/VP-16 that he had.

Kristi

Hi Kristi
I am on Tpoptecan as my 2nd line of chemo and it works wonderful for me. Remember- Everyone is different. I am going into my 4th round with this drug and my onc and my 2nd opinion DR (who is at Duke) will keep me on this as it has shrunk my tumors and I feel awesome!
I do have to have 2 shots the week after because my white blood count is down but that is it.
I hope it works as well for your dad as it does for me!!!

Lynn

Kristi-

Hi, my Dad has received 3 rounds of Topetecan and Paclitaxel (Sp?) for his SCLC recurrence in the liver. His recent scan showed some liver tumors were completely gone and several were reduced in size so for him it is working so far. He is still eating pretty good and feeling ok, although tires easily and not sleeping well....which could be due to other things.

Your dear Dad is in my thoughts and prayers.

Stacie

Thanks, Lynn! It sounds like you have had good response to it.

How have your counts been impacted? Did you respond better to the Topotecan than your first line treatment?

Kristi

Thanks, Stacie! Glad that your Dad is responding to Topotecan.

I know everyone responds differently to different chemo drugs.

I am very worried about my dad's quality of life with resuming treatment. That scares me. That's why I am asking.

Kristi

Hi Kristi
My counts are low the week after but go right back up!
My first line shrunk my tumors in half then stopped working. Topotecan has shrunk them as well and no side effects.
Always remember, everyone is different and your dads onc will find the best treatment for him...........
If Topotecan doesn't work for him, there are so many other out there!

Hi Lynn,
My biggest fear with Dad is the hell we went thru this past summer. It was no fuin at all. My dad had low counts with Carboplatin and VP-16.

Kristi

My husband (SCLC/ diagnosed 7-31-06) had it as second line treatment and his tumors grew, as did mets in his brain. (he had undergone whole brain radiation after diagnosis as a precaution, so we don't know why that happened, other than the cancer must have mutated...) Anyway, he's now on taxol and appears to be tolerating it pretty well. Whether it is helping, we'll have to wait until his upcoming scan...

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