Any experience with Gemzar, Topotecan, Doxil, Avastin.

Always Hopeful

Hi all!

It has been a while since I posted, however, my cousin and daughter recently did on my behalf. I thank those of you who assisted them.

After 18 weeks of Taxol and 6 cycles (once every 3 weeks) of carboplatin (from April 28 to August 25), my cat scan results were quite devastating...numerous tumors throughout my pelvic and abdominal area, aw well as on my sigmoid colon and vaginal cuff. Basically, the taxol and carboplatin did not work at all! My pathology reports after surgery on March 22nd indicated that my gyn organs were clear of disease, except for the nodule in the endometrium and two tiny dots on the sigmoid colon (which were removed). To say the least, it totally blew my mind to realize that in 5 months, after being on the chemo described, that the cancer metasticized the way it has! About a month ago, the vaginal cuff tumor began to bleed. My onc team recommended 10 treatments of radiation (IMRT)to address the bleeding. I will be going later this afternoon for my 4th treatment.

Since I live in the NY metro area, last week I went for a consultation with Memorial Sloan Kettering...what an unsettling and disappointing experience! Their recommendation for treatment was quite strange and their attitude was unacceptable to me. Needless to say, I will not be treated by them.

I met with my gyn onc this morning. She believes we now have to think outside of the box since the standard protocol was a complete failure! To this end, gemzar, topotecan or doxil are being considered for treatment. They are also hoping to get my insurance company to approve the use of Avastin along with one of the aforementioned drugs. Have any of you with UPSC used any of these? If so, I would very much appreciate hearing from you.

Peace and hope, JJ

Kaleena

Hello JJ
First of all let me
Hello JJ

First of all let me say that you news must have been a total shock! I am sorry that you had to hear that. I am confident though that you will find the right treatment. Stay positive and be your own advocate!

I was allergic to taxol so I took gemzar. I had gemzar every two weeks for six months with carboplatin once a month. No adverse reactions. I did not lose my hair. I did have some neuropathy at times, but arthritis also runs in my family.

Please stay positive. I will keep you in my thoughts and prayers.

Kathy

lindaprocopio

Kaleena said:

Hello JJ
First of all let me
Hello JJ

First of all let me say that you news must have been a total shock! I am sorry that you had to hear that. I am confident though that you will find the right treatment. Stay positive and be your own advocate!

I was allergic to taxol so I took gemzar. I had gemzar every two weeks for six months with carboplatin once a month. No adverse reactions. I did not lose my hair. I did have some neuropathy at times, but arthritis also runs in my family.

Please stay positive. I will keep you in my thoughts and prayers.

Kathy

I am currently getting Doxil, w/2nd infusion next Thursday
I am currently getting Doxil for a recurrence. There are 3 or 4 others that post on this Board that also are getting Doxil for recurrences. There us a SEARCH mechanism to this Board that you can use, typing in the word 'Doxil' and the threads should come up. I tried to give a good overview of what Doxil has been like for me so far.

I'm so sorry that the chemo didn't work for you. It's so awful when you put that poison in and get nothing postive in return. That is always the fear with any new-to-you chemo. (I know I worry that the Doxil may not be effective for me, but it's too soon to tell yet.) I'm surprised that they didn't do CA125s that might have flagged the ineffectiveness earlier, or did they? Radiation does seem like a good option for the vaginal cuff. Then you can start trying some of the other chemo drugs. They'll find something that works!

Always Hopeful

lindaprocopio said:

I am currently getting Doxil, w/2nd infusion next Thursday
I am currently getting Doxil for a recurrence. There are 3 or 4 others that post on this Board that also are getting Doxil for recurrences. There us a SEARCH mechanism to this Board that you can use, typing in the word 'Doxil' and the threads should come up. I tried to give a good overview of what Doxil has been like for me so far.

I'm so sorry that the chemo didn't work for you. It's so awful when you put that poison in and get nothing postive in return. That is always the fear with any new-to-you chemo. (I know I worry that the Doxil may not be effective for me, but it's too soon to tell yet.) I'm surprised that they didn't do CA125s that might have flagged the ineffectiveness earlier, or did they? Radiation does seem like a good option for the vaginal cuff. Then you can start trying some of the other chemo drugs. They'll find something that works!

Thank you, Kathy and Linda for responding
Thanks so much for your replies. My medical onc came down to the radiation floor to speak to me...she wants to go with Gemzar, once/week for three weeks and then one week off...after three cycles we'll scan to see what's going on. This should begin the week of October 25th.

CA125 is not a good marker for me...it has always been low!

Once again, thank you for sharing your experiences. Guess I'll now be using the "search" for Gemzar.

Enjoy the weekend. The weather forecast in the NY tristate area and Pa. is a great one!

Peace and hope!

JJ

TiggersDoBounce

JJ
Sending my thoughts and prayers your way....It is so troubling to get a report like that when you were "Doing the right things".....Please know we are all here to support you and keep you company during this bumpy journey.

May they quickly find the best treatment plan for you...like yesterday!!!!

Enjoy the great weekend!

upsofloating

So sorry to hear you went
So sorry to hear you went thru all that chemo with no effect. I am being treated for recurrence, enlarged lymph nodes, positive biopsy. I started with Doxil in January but after 2 cycles with some adverse side effects and a continuously climbing ca125, my gyn-onc switched to Gemzar which was quite effective with July/Aug clean CT and PET scans and ca125 back to normal (from high of 658). My regimen was essentially the same as your rec. however I have yet to make all 3 weeks in the 4 week cycle due to low counts, even on a reduced dose. Wishing you a positive response to this chemo and the radiation. --Annie

Always Hopeful

TiggersDoBounce said:

JJ
Sending my thoughts and prayers your way....It is so troubling to get a report like that when you were "Doing the right things".....Please know we are all here to support you and keep you company during this bumpy journey.

May they quickly find the best treatment plan for you...like yesterday!!!!

Enjoy the great weekend!

Thanks!
Thank you so much for your understanding, support and kindness.

I really pushed myself today to enjoy the beautiful weekend by playing 9 holes of golf! You just can't let this monster cheat you of the things you love to do!

Hoping you're having a great weekend, too.

Hope and peace, JJ

Always Hopeful

upsofloating said:

So sorry to hear you went
So sorry to hear you went thru all that chemo with no effect. I am being treated for recurrence, enlarged lymph nodes, positive biopsy. I started with Doxil in January but after 2 cycles with some adverse side effects and a continuously climbing ca125, my gyn-onc switched to Gemzar which was quite effective with July/Aug clean CT and PET scans and ca125 back to normal (from high of 658). My regimen was essentially the same as your rec. however I have yet to make all 3 weeks in the 4 week cycle due to low counts, even on a reduced dose. Wishing you a positive response to this chemo and the radiation. --Annie

How encouraging!
Dear Annie,

Thankfully, the switch to Gemzar was a decision that led to success for you, in spite of your low counts. It is unfortunate that you had such a bad reaction to Doxil, though.

Thank you for sharing your experience and my best wishes for continued good health.

Peace and hope, JJ

Songflower

I took Doxil
I took Carbo/taxol and then relapsed about eight months after. I don't think it worked well for me either. I took doxil with avastin. I also took prozac. The lab they developed doxil in is in Israel and they noted that women taking doxil did better when on prozac. It does something with the cells. But it doesn't hurt to try! I did very well on doxil/avastin. Then I had HIPEC and now must finish off with doxil again. She wants me to stay on avastin for as long as I can even after completing doxil. I got a rash at #4. I am trying to do all of the "right things" this time with ice etc. Try to stay out of the heat. Doxil web site has a good list of do's and don'ts. I also had a molecular assay and really didn't get a high mark on doxil but it did work very well for me. I get sleepy on it.

Would you qualify for HIPEC with all of your tumors in the abdomen? Dr. Hoefer of Newport News Virginia did mine; he is an excellent surgeon.

I know how discouraging it is when you take all that chemo; suffer so and watch your family struggle too when you are not feeling well. The damn stuff could at least work!

There are many options out there yet.

Thinking of you and passing love and strength over the airwaves.

Diane

Always Hopeful

Songflower said:

I took Doxil
I took Carbo/taxol and then relapsed about eight months after. I don't think it worked well for me either. I took doxil with avastin. I also took prozac. The lab they developed doxil in is in Israel and they noted that women taking doxil did better when on prozac. It does something with the cells. But it doesn't hurt to try! I did very well on doxil/avastin. Then I had HIPEC and now must finish off with doxil again. She wants me to stay on avastin for as long as I can even after completing doxil. I got a rash at #4. I am trying to do all of the "right things" this time with ice etc. Try to stay out of the heat. Doxil web site has a good list of do's and don'ts. I also had a molecular assay and really didn't get a high mark on doxil but it did work very well for me. I get sleepy on it.

Would you qualify for HIPEC with all of your tumors in the abdomen? Dr. Hoefer of Newport News Virginia did mine; he is an excellent surgeon.

I know how discouraging it is when you take all that chemo; suffer so and watch your family struggle too when you are not feeling well. The damn stuff could at least work!

There are many options out there yet.

Thinking of you and passing love and strength over the airwaves.

Diane

Thank you to someone who has truly walked the walk
Dear Diane,

Having read your previous postings regarding your most recent HIPEC and cytoreduction surgery, you, without a doubt, exemplify courage, strength and hope...you are a true warrior!

I don't think I'm emotionally ready for HIPEC at this time. My surgeon does not recommend it now either, stating that things are a bit too widespread. Instead, my oncology team and I have decided to work towards finding a systemic chemo agent(s) that will, at the very least, keep things status quo by preventing new growth. Of course, it is also hoped that it would "kill" off the existing tumors. Except for the bleeding vaginal cuff tumor which is currently being treated with IMRT, I have absolutely no discomfort or pain. Even the 18 weeks of taxol and 6 carbo treatments went pretty easily. So, right now, my quality of life is quite good. However, I also have a clot in my gonadal vein. The anticoagulant shots I was giving myself on a daily basis had to be stopped just prior to beginning the radiation. I am hoping to get back on that ASAP. Thank you, though, for providing your surgeon's name. I will definitely save it for the future.

Did your docs have a difficult time getting approval for the AVASTIN? My med onc is working on that now. If approved, I will receive that too. If the gemzar is not successful, doxil might be the next choice with the avastin. I will definitely pass on your interesting info regarding the prozac and doxil, too.

How are you feeling now after the surgery? I do hope you are doing well and recovering as you expected. After all you have been through, you certainly deserve to be feeling well!

Thank you so much for your response and for providing me with much hope. My prayers and positive thoughts are being sent to you.

Peace and hope,

JJ

Songflower

Always Hopeful said:

Thank you to someone who has truly walked the walk
Dear Diane,

Having read your previous postings regarding your most recent HIPEC and cytoreduction surgery, you, without a doubt, exemplify courage, strength and hope...you are a true warrior!

I don't think I'm emotionally ready for HIPEC at this time. My surgeon does not recommend it now either, stating that things are a bit too widespread. Instead, my oncology team and I have decided to work towards finding a systemic chemo agent(s) that will, at the very least, keep things status quo by preventing new growth. Of course, it is also hoped that it would "kill" off the existing tumors. Except for the bleeding vaginal cuff tumor which is currently being treated with IMRT, I have absolutely no discomfort or pain. Even the 18 weeks of taxol and 6 carbo treatments went pretty easily. So, right now, my quality of life is quite good. However, I also have a clot in my gonadal vein. The anticoagulant shots I was giving myself on a daily basis had to be stopped just prior to beginning the radiation. I am hoping to get back on that ASAP. Thank you, though, for providing your surgeon's name. I will definitely save it for the future.

Did your docs have a difficult time getting approval for the AVASTIN? My med onc is working on that now. If approved, I will receive that too. If the gemzar is not successful, doxil might be the next choice with the avastin. I will definitely pass on your interesting info regarding the prozac and doxil, too.

How are you feeling now after the surgery? I do hope you are doing well and recovering as you expected. After all you have been through, you certainly deserve to be feeling well!

Thank you so much for your response and for providing me with much hope. My prayers and positive thoughts are being sent to you.

Peace and hope,

JJ

Thank You
Thank you for the lovely words. I sometimes don't realize how much I have been through until someone points it out to me. You will find the right chemo for you. Then you will be happy and surprised. Adriamycin (doxil) is so old and worked so well for me. You will find yours. Avastin was amazingly not hard to get approved once I had a recurrance. She plans to keep me on it for at leasat a year after I finish the doxil.

I'm praying for you. Let us know what you try.

Diane