Topotecan is working

[gah_70]

I had my CA125 drawn on Monday before I started my second 5-day round of Topotecan this week.  Got the results back today, and after just ONE 5-day treatment, my CA125 has fallen by nearly half!  My doctor uses the Douglas Assay and anything over 20 is considered high on that scale (not the typical 0-35 normal range).  My numbers fell from 30 to 16.  This is a much tougher chemo on my body than what I had before as far as neutropenia and anemia, but at least we know this is working.  I am so relieved, especially after hearing Helmar's experience with it.  Christa, if you are reading this, I hope and pray your numbers do the same!  

Gail :) :) :)

[justscore]

CONGRATS on your falling #'s, may they keep falling!!!!!

[cathiew]

Interested in Betaglucan.  My Mom starts topotecan next week and has issues with red and white counts.  What dose do you take and what is the best brand?  Any side effects?
Thank you for your time.

[OnlyLady]

Hi Gail....I'm not a frequent visitor to this board, so I just now read your post about the experiences you have been having.  I'm happy that your CA125 levels are doing better, and I wish you continued success!

I have been struggling with OVCA for over 2 years now, and I'm currently taking Doxil (having 2nd infusion tomorrow) and thought I'd mention something to you about a supplement that I have been taking for my white and red blood cells.  It's a product called Betaglucan, and my oncologist said it was okay to take.  Since I've been taking it (every morning) for the past few months, I have not had my white or red blood cells drop below "normal" for cancer patients (usually a 4 for the whites and 10 for the reds).  I have not needed any Procrit shots since taking this supplement.  My doctor was amazed, but now is very pleased that it enables me to continue to do chemo without that complication.

You might want to ask your oncologist about whether it would be okay for you to try.
Best wishes,
Jan

[Helmar]

Hello... I've been on chemo now for just on 3 years, and I've had a lot of the 'regular' ones going around...Topotecan included. The only drug my Oncol. has me on for fighting blood clots is half an aspirin each day. I've never been on anything else, and it seems to  be working. I'm very active, so maybe that helps too. Just thought I would mention this, as it seems the Coumadin is stopping your wife from having Avastin. Just wondering if the aspirin worked for her, then she maybe able to have the Avastin. Could be worth talking with her Oncol. about this. I hope your wife is doing well though. Best wishes...Helen...

[Chuck10010]

My wife is on her third recurrence.  She was originally diagnosed in January 2000.  She's been on Carbo/Taxol, Carbo, Doxil and Topotecan.  She had 16 rounds of Topotecan and it did not work at all for her.  She continued to fill up with fluid and her CA 125 continued to rise (from 80 to 141).  The doctor is now giving her Taxol again and depending on how this works, may go to Gemzar or Navelbeen.  He seems to have the most faith in the Taxol as he feels this has about a 40% chance of working.  I asked him about Avastin, which I've heard about on this site and he indicated that you can't take this drug or type of drug if you are on Coumadin, which she has been on since early in her diagnosis due to blood clots in the lungs due to chemo.  If he took her off to give her Avastin, she would likely get new clots.  We'll know within the next 6 to 9 weeks if the Taxol is going to work and then if she is well enough it's on to the other drugs.  I hope that the Topotecan works well for you.  One thing I forgot to mention is that she has needed transfusions throughout the 'Topotecan treatment.  She had four over a 4 month period and they seemed to be getting more frequent the more of the Topotecan that she had.  Again, I hope that the Topotecan works well for you.

Chuck

[Helmar]

Hi Gail... what wonderful news.. I'm so happy for you, and I hope it continues to work so well, and you get a good and long remission from it. I only gave my experience, but as I've said here before, we are all different in how we respond to the treatments, so what works for one, may not work for another, but your news is great. Wishing you all the best. hugs...Helen..

[Christa54]

I'm so thrilled for you!  We are on different treatment schedules since I'm receiving it weekly instead of daily and have only gotten 2 doses.  I think my doc is going with the standard ca125 scale which crept up to 167 from 14.  He also is going to monitor my level of ascites instead of continuously tapping it.  But I have to say that this chemo is much less harsh than the carbo taxol.  I know I will expect the counts to start droppping soon so am hoping I can deal with that.

In the meantime, I have my brain MRI schduled this morning.  Symptoms are getting worse so I am concerned that there either may be new tumor growth, brain necrosis or increased swelling.  I'll be in touch on that issue.

Gail, how are you doing with the actual side effects of the Topotecan?

[freshair]

Gail,
This is great news. Being that the percentage rate is so low, you're in there. I look forward to hearing single digit numbers.

Christa,
Good luck with your MRI. I will be praying for you and thinking about you all day.
Helen

[Christa54]

Just got off the phone with the hospital.  Their MRI machine is broken so it's resceduled for Monday.  Thanks for continuing to lift me up in prayer!!

Christa

[gah_70]

Side effects are pretty harsh, but I am getting a high dose.  A normal dose is 1.5 mg/m squared/day, over a 5 day period.  I am getting 3 mg/m squared/day over a 5 day period.  Doctor chose to do that because of my bad reaction to the Carboplatin, and he didn't want the cancer to get a leg up.  Bad part is that since Topotecan is so hard on the blood cell counts, getting a double dose is just that much worse.  My white count got low enough that I had to have antibiotic infusions for three days after my last treatment.  Platelets got down in the 40's...bruised myself taking a band aid off!  I stay anemic, no matter if I get my two shots of Procrit a week or not, so really, that isn't a good indicator for me.  I have also had a problem with thrush in my mouth, so I am taking Diflucan and acidophilus pills.  

But the bottom line to all of this is that no matter how bad I feel, it is working.  As you ladies who are going through it, or have have been through it know, none of this is easy.  I am looking forward to the day I can look back on all of this....a day when I am feeling good....and know that it was worth it.

My thoughts and prayers are always with you ladies (and gents, and caregivers).  What a tough way to "meet" each other, but I think being able to come here and "talk" helps many of us trudge forward.  

Christa, I will be waiting to hear how your MRI goes on Monday.  I will definitely be thinking about you!

Gail    

[Conquerer]

Congratulations,  that always makes all of us feel better.  there are drugs out there that work for the second or third go around.
Hooray