Topotecan

Shiela

Hello,

I'm starting treatment with Topotecan tomorrow. If you've had experience with this
drug, I'd love to hear from you.

Best,

Shiela

Songflower

Topotecan
I am on this weekly and have had four cycles. It makes me very sleepy and I get diarrhea, nausea, pain in the tumor, etc. You have to drink lots of fluids and I think that is the key to getting on with it. That is a challenge with nausea and diarrhea. My hair is starting to come out so I need to find some new hair. They have good reports in using this with ovarian cancer. They send me for rehydration twice weekly. It is excreted in the kidney so you must drink those fluids. I still get chemo brain. I think I did better with doxil but you can't choose your reaction. For me it's alot easier than carbo/plat/taxol.

Love, Diane

Shiela

Songflower said:

Topotecan
I am on this weekly and have had four cycles. It makes me very sleepy and I get diarrhea, nausea, pain in the tumor, etc. You have to drink lots of fluids and I think that is the key to getting on with it. That is a challenge with nausea and diarrhea. My hair is starting to come out so I need to find some new hair. They have good reports in using this with ovarian cancer. They send me for rehydration twice weekly. It is excreted in the kidney so you must drink those fluids. I still get chemo brain. I think I did better with doxil but you can't choose your reaction. For me it's alot easier than carbo/plat/taxol.

Love, Diane

Topotecan
Dianne,

Thanks for your response. I had my first cycle of Topotecan yesterday and the only side
effect at this point is a bit of chemo brain. Based on my experience with other chemos
the effects will probably start in a few days. The chemo nurse told me to drink lots of
fluids with this treatment. You mentioned rehydration....is that IV fluids?

I'm sorry to hear your hair is coming out. Mine just grew back a few months ago and I hate the thought of losing it again. The nurse said it might just thin, which wouldn't be that bad.

My main concern is that this chemo will work. After four cycles, do you have an indication how well it's working for you?

Be well.

Shiela

Songflower

Shiela said:

Topotecan
Dianne,

Thanks for your response. I had my first cycle of Topotecan yesterday and the only side
effect at this point is a bit of chemo brain. Based on my experience with other chemos
the effects will probably start in a few days. The chemo nurse told me to drink lots of
fluids with this treatment. You mentioned rehydration....is that IV fluids?

I'm sorry to hear your hair is coming out. Mine just grew back a few months ago and I hate the thought of losing it again. The nurse said it might just thin, which wouldn't be that bad.

My main concern is that this chemo will work. After four cycles, do you have an indication how well it's working for you?

Be well.

Shiela

Topetecan
I don't know how it is is working yet. I was off two cycles; the wedding and a fall. I did get dehydrated over the wedding and ended up in the hospital so it's important to drink. I go in for rehydration two days a week plus one day of chemo. I asked them to add the big 1000 cc bag on chemo day; that seemed to help too. My hair is thinning and I don't know if I should cut it or wait. I guess some people just get the thinning.

I did get alot of pain in my tumor and that usually indicates tumor flare or cell death so that is a good sign. I've read they have had good results with this chemo with ovarian cancer.

We're in this together! Love, Diane

Shiela

Songflower said:

Topetecan
I don't know how it is is working yet. I was off two cycles; the wedding and a fall. I did get dehydrated over the wedding and ended up in the hospital so it's important to drink. I go in for rehydration two days a week plus one day of chemo. I asked them to add the big 1000 cc bag on chemo day; that seemed to help too. My hair is thinning and I don't know if I should cut it or wait. I guess some people just get the thinning.

I did get alot of pain in my tumor and that usually indicates tumor flare or cell death so that is a good sign. I've read they have had good results with this chemo with ovarian cancer.

We're in this together! Love, Diane

Topotecan
Diane,

I have been very dehydrated since my first injection....I can't seem to drink enough fluids.

So sorry to hear your hair is thinning....that's likely waiting for me as well. My hair
is fairly short so I'm not going to cut it...I'll see how it looks with the thinning. I've
read you can lose 30 percent of your hair without it being too noticeable. After spending
the winter in scarves, I'm not ready to go back to that look so soon.

I didn't know pain in the tumor indicated flare or cell death...that's good to know.

Be well.

Best,

Shiela

TiggersDoBounce

Songflower said:

Topetecan
I don't know how it is is working yet. I was off two cycles; the wedding and a fall. I did get dehydrated over the wedding and ended up in the hospital so it's important to drink. I go in for rehydration two days a week plus one day of chemo. I asked them to add the big 1000 cc bag on chemo day; that seemed to help too. My hair is thinning and I don't know if I should cut it or wait. I guess some people just get the thinning.

I did get alot of pain in my tumor and that usually indicates tumor flare or cell death so that is a good sign. I've read they have had good results with this chemo with ovarian cancer.

We're in this together! Love, Diane

Diane and Shiela
Sending you both healing thoughts and lots of prayers...

Hang in there ladies......live strong!

Laurie

Songflower

TiggersDoBounce said:

Diane and Shiela
Sending you both healing thoughts and lots of prayers...

Hang in there ladies......live strong!

Laurie

Topotecan
Sheila,
I saw my oncologist today. My CA 125 is not going down. He is not sure the topotecan is working; but not ready to give up on it yet. MY platelets today were low so no chemo. I don't want to discourage you but wanted to let you know. Be sure you are drinking enough fluids; your urine should be light yellow in the morning and not slightly brown.

It is discouraging to take chemo that is not working. I know I don't know that for sure yet. He mentioned xeloda and gemzar. Taking a pill sounded wonderful.

Keep your chin up. I suspect my cancer is very agressive. love,
Diane

Shiela

Songflower said:

Topotecan
Sheila,
I saw my oncologist today. My CA 125 is not going down. He is not sure the topotecan is working; but not ready to give up on it yet. MY platelets today were low so no chemo. I don't want to discourage you but wanted to let you know. Be sure you are drinking enough fluids; your urine should be light yellow in the morning and not slightly brown.

It is discouraging to take chemo that is not working. I know I don't know that for sure yet. He mentioned xeloda and gemzar. Taking a pill sounded wonderful.

Keep your chin up. I suspect my cancer is very agressive. love,
Diane

Topotecan Update
Diane,

So sorry to hear the Topotecan isn't bringing your CA125 down. I know how discouraging it is
to take a chemo that doesn't work. I had that experience recently with a clinical trial.

I've had quite a few problems with Topotecan after just one dose. My blood counts have dropped and I ended up with a high fever and fatigue on Sunday. Now I'm on antibiotics, pain killers and today I had to have a blood transfusion. I'm having another infusion next week....they might lower the dose.

For some reason, in spite of the difficulties this week, I'm feeling more confident than I have in the last few months.

I'm sorry to hear your cancer is very agressive....I was told mine was when diagnosed 18 months ago but felt I'd made much progress and would be able to beat this.

As you said, chin up and keep moving forward.

Be well.

Shiela

Songflower

Shiela said:

Topotecan Update
Diane,

So sorry to hear the Topotecan isn't bringing your CA125 down. I know how discouraging it is
to take a chemo that doesn't work. I had that experience recently with a clinical trial.

I've had quite a few problems with Topotecan after just one dose. My blood counts have dropped and I ended up with a high fever and fatigue on Sunday. Now I'm on antibiotics, pain killers and today I had to have a blood transfusion. I'm having another infusion next week....they might lower the dose.

For some reason, in spite of the difficulties this week, I'm feeling more confident than I have in the last few months.

I'm sorry to hear your cancer is very agressive....I was told mine was when diagnosed 18 months ago but felt I'd made much progress and would be able to beat this.

As you said, chin up and keep moving forward.

Be well.

Shiela

Topetocan
Dear Sheila,

We are at the stage where we are not really sure. I guess sometimes CA 125 can go up before it goes down. Plus I had Two weeks with out for a wedding. I also had a fever once. It seemed easier to take after a few infusions. I think it's common for the platelets to go down; I had to skip this week.

I think you may feel better with infusions for dehydration a day or two after the infusion. I'd ask them. When I tried drinking more; which I understand was so hard on that stuff I felt so much better.

Keep fighting,
Diane

lindaprocopio

Songflower said:

Topetocan
Dear Sheila,

We are at the stage where we are not really sure. I guess sometimes CA 125 can go up before it goes down. Plus I had Two weeks with out for a wedding. I also had a fever once. It seemed easier to take after a few infusions. I think it's common for the platelets to go down; I had to skip this week.

I think you may feel better with infusions for dehydration a day or two after the infusion. I'd ask them. When I tried drinking more; which I understand was so hard on that stuff I felt so much better.

Keep fighting,
Diane

I don't think the importance of 64 oz. fluid daily is emphasized
Early on, during my very first carbo/taxol, my chemo nurse encouraged me to drink 64 oz. of water every single day I was in treatment, regardless of the type of chemo drug or radiation. She assured me that staying well-hydrated and flushing the drugs out of your body was the single most imporatnt thing I could do for myself. And I have done that, throughout the almost 3 years I've been in treatment now. I believe one of the reasons I have felt so good throughout my treatments is because of this habit which I follow faithfully and is now second nature to me. I take between 1/3 and 1/2 of this daily 64 oz. of non-caffeine, non-alcohol fluid as brewed green tea and the rest as plain old water. Maybe we should be driving that home more here on the Board. It can be hard to do when you are nauseous, but I find on those rare odd days that if I drink hot tap water, that is the most soothing when I feel quesey.

Diane, hang in there a little longer on the Topotecan; you're oncologist will take you off it if he becomes convinced that it isn't working. When do you have your next CT/PET? When chemo drugs started failing me, we started doing CT/PETS every 2 months so that we would have some idea whether it was time to move on from the drug we were using. I didn't like all the scans, but I liked taking non-effective chemo drugs even less, so I did the frequent scans to check for disease progression or regression.

Which is in pill form: the xeloda or the gemzar? I know nothing about xeloda, but gemzar and topotekan have been the 2 drugs discussed for me for this fall after I get past the 2nd half of my radioembolism (that now looks like will be 8/15 since the surgeon has yet another vacation coming up). Tuesday's CT scan showed that the right side of my liver is 'improved' from the radioembolism, and the left side that we haven't done yet is 'stable', (as are the malignant lymph nodes I have been ignoring except for the oral tamoxifen/megace I have been taking the past 11 weeks), so I guess I can safely continue my treatment break another month. I sure have enjoyed this almost treatment-free spring & summer, even though I know I have to get back in battle mode soon. MY CA125 dropped from the terrifying 8454 it was on the blood draw I had taken June 1 just before my radioembolism procedure, to 3768 on Tuesday on my pre-CT-scan blood draw. 3768 is still a pretty damn awful CA125, but I am encouraged that my CA125 dropped more than half from that treatment and hope for more good news like that after I do the other half of my liver.

Fayard

lindaprocopio said:

I don't think the importance of 64 oz. fluid daily is emphasized
Early on, during my very first carbo/taxol, my chemo nurse encouraged me to drink 64 oz. of water every single day I was in treatment, regardless of the type of chemo drug or radiation. She assured me that staying well-hydrated and flushing the drugs out of your body was the single most imporatnt thing I could do for myself. And I have done that, throughout the almost 3 years I've been in treatment now. I believe one of the reasons I have felt so good throughout my treatments is because of this habit which I follow faithfully and is now second nature to me. I take between 1/3 and 1/2 of this daily 64 oz. of non-caffeine, non-alcohol fluid as brewed green tea and the rest as plain old water. Maybe we should be driving that home more here on the Board. It can be hard to do when you are nauseous, but I find on those rare odd days that if I drink hot tap water, that is the most soothing when I feel quesey.

Diane, hang in there a little longer on the Topotecan; you're oncologist will take you off it if he becomes convinced that it isn't working. When do you have your next CT/PET? When chemo drugs started failing me, we started doing CT/PETS every 2 months so that we would have some idea whether it was time to move on from the drug we were using. I didn't like all the scans, but I liked taking non-effective chemo drugs even less, so I did the frequent scans to check for disease progression or regression.

Which is in pill form: the xeloda or the gemzar? I know nothing about xeloda, but gemzar and topotekan have been the 2 drugs discussed for me for this fall after I get past the 2nd half of my radioembolism (that now looks like will be 8/15 since the surgeon has yet another vacation coming up). Tuesday's CT scan showed that the right side of my liver is 'improved' from the radioembolism, and the left side that we haven't done yet is 'stable', (as are the malignant lymph nodes I have been ignoring except for the oral tamoxifen/megace I have been taking the past 11 weeks), so I guess I can safely continue my treatment break another month. I sure have enjoyed this almost treatment-free spring & summer, even though I know I have to get back in battle mode soon. MY CA125 dropped from the terrifying 8454 it was on the blood draw I had taken June 1 just before my radioembolism procedure, to 3768 on Tuesday on my pre-CT-scan blood draw. 3768 is still a pretty damn awful CA125, but I am encouraged that my CA125 dropped more than half from that treatment and hope for more good news like that after I do the other half of my liver.

Hola
Hola Linda, I do also drink at least 64 oz of water a day, plus teas and juices.
I was told to do this by another cancer patient who had recurrence.
So far, 2 treatments away from finishing, I have felt well enough. Just now I am feeling dizzy and off balance, guessing is due to all the treatments I have had so far, 16.

HellieC

lindaprocopio said:

I don't think the importance of 64 oz. fluid daily is emphasized
Early on, during my very first carbo/taxol, my chemo nurse encouraged me to drink 64 oz. of water every single day I was in treatment, regardless of the type of chemo drug or radiation. She assured me that staying well-hydrated and flushing the drugs out of your body was the single most imporatnt thing I could do for myself. And I have done that, throughout the almost 3 years I've been in treatment now. I believe one of the reasons I have felt so good throughout my treatments is because of this habit which I follow faithfully and is now second nature to me. I take between 1/3 and 1/2 of this daily 64 oz. of non-caffeine, non-alcohol fluid as brewed green tea and the rest as plain old water. Maybe we should be driving that home more here on the Board. It can be hard to do when you are nauseous, but I find on those rare odd days that if I drink hot tap water, that is the most soothing when I feel quesey.

Diane, hang in there a little longer on the Topotecan; you're oncologist will take you off it if he becomes convinced that it isn't working. When do you have your next CT/PET? When chemo drugs started failing me, we started doing CT/PETS every 2 months so that we would have some idea whether it was time to move on from the drug we were using. I didn't like all the scans, but I liked taking non-effective chemo drugs even less, so I did the frequent scans to check for disease progression or regression.

Which is in pill form: the xeloda or the gemzar? I know nothing about xeloda, but gemzar and topotekan have been the 2 drugs discussed for me for this fall after I get past the 2nd half of my radioembolism (that now looks like will be 8/15 since the surgeon has yet another vacation coming up). Tuesday's CT scan showed that the right side of my liver is 'improved' from the radioembolism, and the left side that we haven't done yet is 'stable', (as are the malignant lymph nodes I have been ignoring except for the oral tamoxifen/megace I have been taking the past 11 weeks), so I guess I can safely continue my treatment break another month. I sure have enjoyed this almost treatment-free spring & summer, even though I know I have to get back in battle mode soon. MY CA125 dropped from the terrifying 8454 it was on the blood draw I had taken June 1 just before my radioembolism procedure, to 3768 on Tuesday on my pre-CT-scan blood draw. 3768 is still a pretty damn awful CA125, but I am encouraged that my CA125 dropped more than half from that treatment and hope for more good news like that after I do the other half of my liver.

Great to hear your CA 125 is dropping
Great to hear your CA 125 is dropping. I know it's still very high, but I wonder whether it's the Megace kicking in? I know you were concerned that because your tumours didn't have receptors that it was a long shot, but perhaps that long shot is paying off? I hope and pray that it is, as you are such a positive inspiration to us on these boards.
Go Linda, go!
Helen

norma2

lindaprocopio said:

I don't think the importance of 64 oz. fluid daily is emphasized
Early on, during my very first carbo/taxol, my chemo nurse encouraged me to drink 64 oz. of water every single day I was in treatment, regardless of the type of chemo drug or radiation. She assured me that staying well-hydrated and flushing the drugs out of your body was the single most imporatnt thing I could do for myself. And I have done that, throughout the almost 3 years I've been in treatment now. I believe one of the reasons I have felt so good throughout my treatments is because of this habit which I follow faithfully and is now second nature to me. I take between 1/3 and 1/2 of this daily 64 oz. of non-caffeine, non-alcohol fluid as brewed green tea and the rest as plain old water. Maybe we should be driving that home more here on the Board. It can be hard to do when you are nauseous, but I find on those rare odd days that if I drink hot tap water, that is the most soothing when I feel quesey.

Diane, hang in there a little longer on the Topotecan; you're oncologist will take you off it if he becomes convinced that it isn't working. When do you have your next CT/PET? When chemo drugs started failing me, we started doing CT/PETS every 2 months so that we would have some idea whether it was time to move on from the drug we were using. I didn't like all the scans, but I liked taking non-effective chemo drugs even less, so I did the frequent scans to check for disease progression or regression.

Which is in pill form: the xeloda or the gemzar? I know nothing about xeloda, but gemzar and topotekan have been the 2 drugs discussed for me for this fall after I get past the 2nd half of my radioembolism (that now looks like will be 8/15 since the surgeon has yet another vacation coming up). Tuesday's CT scan showed that the right side of my liver is 'improved' from the radioembolism, and the left side that we haven't done yet is 'stable', (as are the malignant lymph nodes I have been ignoring except for the oral tamoxifen/megace I have been taking the past 11 weeks), so I guess I can safely continue my treatment break another month. I sure have enjoyed this almost treatment-free spring & summer, even though I know I have to get back in battle mode soon. MY CA125 dropped from the terrifying 8454 it was on the blood draw I had taken June 1 just before my radioembolism procedure, to 3768 on Tuesday on my pre-CT-scan blood draw. 3768 is still a pretty damn awful CA125, but I am encouraged that my CA125 dropped more than half from that treatment and hope for more good news like that after I do the other half of my liver.

Glad your CA 125 dropped
Glad to see your post, Linda. I have been wondering how it is going for you. I find this site so helpful when people post about their individual experiences with fighting cancer. Your posts are a source of hope to so many of us. I think of you often and send up prayers for your continued success. You look MARVELOUS in your photo.

norma2

No experience...but wishing you the very best.
No experience with this med yet. However, wishing you the very best with it. I had to drink tons of water while on chemo. It helped, I think. I found a squeeze of lemon made it more palatable.

Songflower

norma2 said:

No experience...but wishing you the very best.
No experience with this med yet. However, wishing you the very best with it. I had to drink tons of water while on chemo. It helped, I think. I found a squeeze of lemon made it more palatable.

Chemo Drugs
I know what you mean about being off chemo drugs. MY platelets are low and I was off one week. I've heard that topotecan is different and I may need to be patient We are so obsessed with CA 125. I no longer get my chemo from my Gyn Onc. She is working solo and has chemo patients and is in surgery all the time. I am at the stage where I need more care. I must say When I had complications from topetocan they were right there for me.

Sometimes I think my cancer is chemo resistant. I did well on doxil and avastin but my blood pressure went up. When I went off I relapsed.

The oncologist mentioned xeloda (which is old 5Fu broken down in pill form) A pill just sounded so wonderful but I have never heard of using it for our cancer. I mentioned gemzar and he said we could do that. It seems my blood work goes abnormal faster than it use to. I think he is looking for something for maintenance for me. I still have an appt with my Gyn Onc to see what she says.

I think the fluids are so important too. I still have coffee in the morning.

It would be heaven if a pill worked, wouldn't it?

Diane

kkstef

Songflower said:

Chemo Drugs
I know what you mean about being off chemo drugs. MY platelets are low and I was off one week. I've heard that topotecan is different and I may need to be patient We are so obsessed with CA 125. I no longer get my chemo from my Gyn Onc. She is working solo and has chemo patients and is in surgery all the time. I am at the stage where I need more care. I must say When I had complications from topetocan they were right there for me.

Sometimes I think my cancer is chemo resistant. I did well on doxil and avastin but my blood pressure went up. When I went off I relapsed.

The oncologist mentioned xeloda (which is old 5Fu broken down in pill form) A pill just sounded so wonderful but I have never heard of using it for our cancer. I mentioned gemzar and he said we could do that. It seems my blood work goes abnormal faster than it use to. I think he is looking for something for maintenance for me. I still have an appt with my Gyn Onc to see what she says.

I think the fluids are so important too. I still have coffee in the morning.

It would be heaven if a pill worked, wouldn't it?

Diane

Thinking of you Diane!
Diane,

Am hoping that your week free was an enjoyable one for you! Yes, a Pill would sure beat an infusion, that is for sure. If nothing else, it gives you more time to do the things you want to do as you not running back and forth OR sitting in an infusion suite!

I can't give up my morning coffee either....and don't expect I ever will!

Will be interesting to see what your Gyn Onc has to say.

Wishing you the best!

Karen