Dear Helen,
sorry I took so long to answer you. I haven't logged into this site until yesterday. The study is at NYU cancer center and it is still open.
I was taken off the study last week because my CA125 started to rise again I think it was because I had so many delays because of low platelets and white cells.
I do know another woman who was on it and completed the study and did very well. Her CAT scan was completely clean
I just started round 2 of Topotecan. (once a week for 3 weeks and 1 week off)
since I was tolerating it well my onc upped my dosage yesterday just a little. So far the biggest problem I have run into is fatigue. But we are keeping a close eye on my blood counts as it can play heck with them.
Hi Sher, i guess u might have 12 chemo by now then. my mum was diagnosed with Stage 4 as well on March 2006, none stop chemos since then, there are 17 already. but We do not try Topotecan yet, As the Ca125 gose up >5000, she now have Femara and Etoposide Capsules for a try. my mum's Symptoms is Lymph node Enlargement, dont know Topotecan works for it as well.
cheers
Furla
Hi Sher,
Could I ask where the clinical trial is? And is it still open.
Thanks,
Helen
Hi- I'm on a clinical trial with topotecan and oxiliplatin. I get topotecan for 2 weeks continually infused through a pump and oxaliplatin once every two weeks. My blood counts were affected and I had to delay treatment but even delaying treatment, my counts went from ca125 of 240 down to 50 in one month. I'm very excited about this.
I was diagnosed with stage 4 in March of 06- took carbo and taxol for 6 months and was in remission for 8 months- took doxil for five months, but then my counts started going up again.
Other than fatigue, constipation, hair thinning and low blood counts- I'm doing ok- just trying to live one day at a time. Sher
Mark, I have been on a weekly topotecan for 4 months. The worse side effect has been diarrhea. On the 4th day out, Iusually get real fatigued. However, the results haven't been real good. I have had to have fluid taken off my lung and abdomem. My CA125 went down to 75, but it back to 108. Who knows what any of this means. Take ccare, Yvonne
It sounds like you are on for five days and off for three weeks. I only get it once a week for three weeks and off one. The side effects are very mild on the once a week type. But you will need to take nausea medications.
Hi Mark.. I've had Topotecan twice... last year, and again recently. I was taking it 5 days consecutively, which is fairly harsh, but the only side affect I've had was terrible fatigue, particularly recently when I was taking Femara as well. I didn't get nausea either time, but I guess I'm lucky that I don't get nausea with any of these drugs. No hair loss..but thinning of hair, and no problems with the bloods. Apart from the above, nothing to report....but it didn't work. Sent my numbers up, but I still felt fine.
I wish your daughter all the best, and hopefully Topotecan will work for her. Plenty of rest and fluids is about all I can advise. Hugs..Helen...
From the topotecan web site side effects
What are the possible side effects of topotecan?
If you experience any of the following serious side effects from topotecan, seek emergency medical attention or contact your doctor immediately:
an allergic reaction (including difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives);
decreased bone marrow function and blood problems (extreme fatigue; easy bruising or bleeding; black, bloody or tarry stools; or fever, chills, or signs of infection);
tissue or vein reactions near the site of administration;
fatigue (weariness or tiredness), fever, chills, or other signs of infection; or
coughing or difficulty in breathing.
Other, less serious side effects may be more likely to occur. Continue taking topotecan and talk to your doctor if you experience:
mid to moderate nausea, vomiting, diarrhea, constipation, abdominal pain, or loss of appetite;
headache, body pain, back pain, muscle pain or weakness;
temporary hair loss; or
a skin rash.
Other side effects have also been reported. Discuss with your doctor any side effect that occurs during treatment with topotecan.
What other drugs will affect topotecan?
Do not receive "live" vaccines during treatment with topotecan. Administration of a live vaccine may be dangerous during treatment with topotecan.
Drugs other than those listed here may also interact with topotecan. Talk to your doctor and pharmacist before taking any other prescription or over-the-counter medicines, including herbal products, during treatment with topotecan
I just started on Topotecan 2 weeks ago and so far it has been rather mild. I have had fatigue and some slight nausea and that is about it. I was told by my ocn that it could be hard on my blood counts, but so far so good. I hope this helps and I wish your daughter the best of luck. LOL Chris