Susan523
I see you posted you were in remission 4 times in 4 years. Please tell me what meds were used and how long. I was trying to piece it together by reading your previous post and your profile. I am currently on Doxil for first recurrence and unsure if it is working. CA125 is still normal but it might be unreliable marker for me at this point. Gemzar might be my future option.
THANKS!
Comments
-
Hi, Nancy,
I am so sorry to hear of your recurrence.
My first chemo was 6 treatments of Taxol/Carbo.
My last treatment was in March '07, but by May the CA started to creep up.
By October it was up to 40.
In November he did an exploratory laperoscopy; and found "salt & pepper" type 'flakes' of cancer... He was hoping to take a tissue sample to send to the lab, but couldn't get a big enough sample. Maybe you can ask your doctor about that. I understand that if they get a good sample, they can send it to a lab and test to see what chemo might work best.
So my 2nd chemo started in December '07, IP Chemo. That's the port in the stomach, putting Carboplatin directly into the abdomen, and Taxol into my regular port. I was hospitalized for those treatments. He had planned on 6 treatments, but after 5 of them my CA had dropped, so he cancelled that last treatment. I was very happy at the time; but looking back, I kind of wish we had done that last treatment anyway. (My CA was at 4.3)
That was in May, '08.
By October my CA was back up to 35 (my lab uses a 'normal' of 3.5-17.0).
By the way, he left that stomach port in, and I started having infections, so he removed it in November.
He didn't want to start chemo right away again; he wanted me to have some "quality time".
But I couldn't enjoy it, because I knew what was coming.
So for my 3rd round, I asked him for Gemzar alone, because I wanted to keep my hair.
He went along with it, but it didn't work for me. In fact, it made me very sick, and I ended up in the hospital with dehydration & fluid build-up. (twice in a few weeks). That was March of '09. 6 treatments; 3 weeks apart, but my labs didn't allow that. I think every treatment was delayed by a week or two. Gemzar is very hard on the bone marrow.
With the 2nd fluid build-up, I was very sick. In fact, I dropped from 125lbs down to 98.
I truly thought I was going to die. Both times I was hospitalized they removed 4 litres of fluid. So during that second hospitalization, he came in and said "we need to start a new chemo right away, even though you're weak, and it's going to be rough". I agreed, and
so for my 4th treatment I got
Taxol/Carbo + Avastin.
Avastin. Please ask your doctor and insurance for it! I started it in September '09. It was supposed to be 6 treatments 3 weeks apart, but again I had delays due to labs.
I think it's saved my life.
Avastin is a blood inhibitor that cuts off the blood supply to the cancer cells and so they die.
It gave me a few nose bleeds, runny nose, & severe headaches, but that is starting to subside now. (my last treatment was Feb 9th).
At first my CA actually started to CLIMB. I got very scared; it went up from 53 to 61, then 71 after 3 treatments. I asked if we should try something else, and he said "let's do 1 more". Well, after the 4th treatment, my CA dropped to 29!! (again with 17.0 being 'normal'). 5th treatment, CA 11.9, 6th treatment 6.1
A month later, still 6.1
My infusion nurse called me at home, she was SO excited! She said "do you know how great that is, that your CA stayed exactly the same?" (I had even called to make sure it wasn't a mistake!)
She told me that they are having a lot of success with Avastin. Many ladies are also on Avastin alone, 3 weeks apart.
My last treatment was Feb 9th. I'm still recovering, not much of an appetite at all, and still fatigued, but I'm here!! And I've got a cruise to Alaska at the end of May to look forward to. I go back for a check-up the end of June. So I'm on a 3-month hiatus from appointments & needles. (by the way, use port numbing cream for your blood-draws. Works GREAT!)
I hope all of this makes sense... I've got chemo-brain and it's getting late.
Best of luck to you, Nancy, and I'll be keeping you in my prayers.
I listen to a LOT of meditation/visualization cds when I go to bed, too, and sometimes during the day. It helps me mentally. I'm still only 115lbs, but trying to gain. (I'm 5'4"). Drinking a lot of soy protein powder mixed with whole milk when I can't eat.
Take care, and let me know if I can answer any questions at all.
And have Faith. God has gotten me this far, and He will help you, too.
~Susan xoxo0 -
thanksSusan523 said:Hi, Nancy,
I am so sorry to hear of your recurrence.
My first chemo was 6 treatments of Taxol/Carbo.
My last treatment was in March '07, but by May the CA started to creep up.
By October it was up to 40.
In November he did an exploratory laperoscopy; and found "salt & pepper" type 'flakes' of cancer... He was hoping to take a tissue sample to send to the lab, but couldn't get a big enough sample. Maybe you can ask your doctor about that. I understand that if they get a good sample, they can send it to a lab and test to see what chemo might work best.
So my 2nd chemo started in December '07, IP Chemo. That's the port in the stomach, putting Carboplatin directly into the abdomen, and Taxol into my regular port. I was hospitalized for those treatments. He had planned on 6 treatments, but after 5 of them my CA had dropped, so he cancelled that last treatment. I was very happy at the time; but looking back, I kind of wish we had done that last treatment anyway. (My CA was at 4.3)
That was in May, '08.
By October my CA was back up to 35 (my lab uses a 'normal' of 3.5-17.0).
By the way, he left that stomach port in, and I started having infections, so he removed it in November.
He didn't want to start chemo right away again; he wanted me to have some "quality time".
But I couldn't enjoy it, because I knew what was coming.
So for my 3rd round, I asked him for Gemzar alone, because I wanted to keep my hair.
He went along with it, but it didn't work for me. In fact, it made me very sick, and I ended up in the hospital with dehydration & fluid build-up. (twice in a few weeks). That was March of '09. 6 treatments; 3 weeks apart, but my labs didn't allow that. I think every treatment was delayed by a week or two. Gemzar is very hard on the bone marrow.
With the 2nd fluid build-up, I was very sick. In fact, I dropped from 125lbs down to 98.
I truly thought I was going to die. Both times I was hospitalized they removed 4 litres of fluid. So during that second hospitalization, he came in and said "we need to start a new chemo right away, even though you're weak, and it's going to be rough". I agreed, and
so for my 4th treatment I got
Taxol/Carbo + Avastin.
Avastin. Please ask your doctor and insurance for it! I started it in September '09. It was supposed to be 6 treatments 3 weeks apart, but again I had delays due to labs.
I think it's saved my life.
Avastin is a blood inhibitor that cuts off the blood supply to the cancer cells and so they die.
It gave me a few nose bleeds, runny nose, & severe headaches, but that is starting to subside now. (my last treatment was Feb 9th).
At first my CA actually started to CLIMB. I got very scared; it went up from 53 to 61, then 71 after 3 treatments. I asked if we should try something else, and he said "let's do 1 more". Well, after the 4th treatment, my CA dropped to 29!! (again with 17.0 being 'normal'). 5th treatment, CA 11.9, 6th treatment 6.1
A month later, still 6.1
My infusion nurse called me at home, she was SO excited! She said "do you know how great that is, that your CA stayed exactly the same?" (I had even called to make sure it wasn't a mistake!)
She told me that they are having a lot of success with Avastin. Many ladies are also on Avastin alone, 3 weeks apart.
My last treatment was Feb 9th. I'm still recovering, not much of an appetite at all, and still fatigued, but I'm here!! And I've got a cruise to Alaska at the end of May to look forward to. I go back for a check-up the end of June. So I'm on a 3-month hiatus from appointments & needles. (by the way, use port numbing cream for your blood-draws. Works GREAT!)
I hope all of this makes sense... I've got chemo-brain and it's getting late.
Best of luck to you, Nancy, and I'll be keeping you in my prayers.
I listen to a LOT of meditation/visualization cds when I go to bed, too, and sometimes during the day. It helps me mentally. I'm still only 115lbs, but trying to gain. (I'm 5'4"). Drinking a lot of soy protein powder mixed with whole milk when I can't eat.
Take care, and let me know if I can answer any questions at all.
And have Faith. God has gotten me this far, and He will help you, too.
~Susan xoxo
Your information was helpful.
My initial treatment plan was 5 rounds carbo/taxol, illeostomy reversal then 3 rounds IP cisplat/taxol. I went through all without any problems and completed treatment April 08. My end of treatment ca125 was 7. CA125 started to creep up. I started having sx of bowel obstruction starting in July. Each time I had these bowel symptoms I'd go to the ER. They would do testing but there was never a bowel obstruction seen on film. My surgeon though maybe cancer was growing and pulling my intestines. My ca 125 was creeping up but still normal. CA125 was about 12 (0-35 normal) at this point and my 3 month CTscan was fine. In November my ca125 was back at 10. I had a PET/CT which showed one 13mm spot on my colon. Biopsy in December confirmed it was recurrent ovarian. I started on Doxil in Jan. 10. I've had 4 infusions thus far. CA125 as follows 15 (starting), 30, 23, 18. I had another PET/CT after 3 infusions. It showed increased SVU uptake on my initial area and a new spot or two with very low SVU uptake. It was decided to continue with Doxil. After my 4th infusion my ca125 went from 18 to 21. I'm scheduled for chemo this Thursday. Not sure if they will continue with the Doxil. I was told if the Doxil does not work I could try Gemzar or their are 2 new clinical trials opening up in April.
When I initially started my cancer center was participating in the clinical trial using avastin with carbo/taxol. My GYN oncologist said he would not recommend it for me because I had an illeostomy from my inital debulking. Now that the illeostomy is reveresed I wonder if it will be a safe option for me. My sister's friend is in the hospital from a bowel perforation from Avastin. She as recurrent breast with mets on the colon. She now has a colostomy. I'm not sure if it helped her cancer or not.
How did they monitor you during your treatement? Did you have any stomach issues during treatment ie pain, diarrhea, constipation?
Thanks for listening.0 -
Hello, Nancy,nancy591 said:thanks
Your information was helpful.
My initial treatment plan was 5 rounds carbo/taxol, illeostomy reversal then 3 rounds IP cisplat/taxol. I went through all without any problems and completed treatment April 08. My end of treatment ca125 was 7. CA125 started to creep up. I started having sx of bowel obstruction starting in July. Each time I had these bowel symptoms I'd go to the ER. They would do testing but there was never a bowel obstruction seen on film. My surgeon though maybe cancer was growing and pulling my intestines. My ca 125 was creeping up but still normal. CA125 was about 12 (0-35 normal) at this point and my 3 month CTscan was fine. In November my ca125 was back at 10. I had a PET/CT which showed one 13mm spot on my colon. Biopsy in December confirmed it was recurrent ovarian. I started on Doxil in Jan. 10. I've had 4 infusions thus far. CA125 as follows 15 (starting), 30, 23, 18. I had another PET/CT after 3 infusions. It showed increased SVU uptake on my initial area and a new spot or two with very low SVU uptake. It was decided to continue with Doxil. After my 4th infusion my ca125 went from 18 to 21. I'm scheduled for chemo this Thursday. Not sure if they will continue with the Doxil. I was told if the Doxil does not work I could try Gemzar or their are 2 new clinical trials opening up in April.
When I initially started my cancer center was participating in the clinical trial using avastin with carbo/taxol. My GYN oncologist said he would not recommend it for me because I had an illeostomy from my inital debulking. Now that the illeostomy is reveresed I wonder if it will be a safe option for me. My sister's friend is in the hospital from a bowel perforation from Avastin. She as recurrent breast with mets on the colon. She now has a colostomy. I'm not sure if it helped her cancer or not.
How did they monitor you during your treatement? Did you have any stomach issues during treatment ie pain, diarrhea, constipation?
Thanks for listening.
So sorry to hear of all you've gone through.
I was really scared about the possibility of a bowel protrusion with the Avastin. I did have diarrhea, but that was most likely from the Taxol/Carbo. I don't think that's listed as an Avastin side effect.
Surprisingly, I didn't have much vomiting during these treatments, except for the first one. I was extremely sick after that first treatment, but I think it was because I had had all of that fluid build-up & dehydration. During the remaining treatments, I would throw up for a day or two; and it wasn't that bad. It was odd. I would usually get sick about 3 days after treatment, but then it started hitting me about 3 weeks after treatment.
It became unpredictable.
The diarrhea/constipation goes back and forth with me, and it has done so since my initial
surgery (they removed parts of intestine & colon). I'm really tired of it; but so happy to
have baby wipes on hand at all times.
I hope that avastin might be an option for you now. It's very pricey, and I was very fortunate that my insurance covered it. In fact, my doctor was very surprised that they did. But now that it's gotten approval for ovarian cancer, I would think that most insurance companies would cover it now (?) I sure hope so. (My doctor had quoted $20,000. per treatment for the Avastin alone; but it didn't bill out that way on my insurance statement).
I think it was more like $13,000.00 .... such a bargain~
There is also information at avastin.com
Best of luck to you; and I'm here if you have any questions at all. I am having some visitors coming Wed-Sat, so I may be out of touch for a few days. You can also reach me at dogsmom@charter.net (sometimes my chemo-brain forgets to check in here).
Hang in there, girlfriend. We'll get through this together~
~Susan xoxo0 -
avastinSusan523 said:Hi, Nancy,
I am so sorry to hear of your recurrence.
My first chemo was 6 treatments of Taxol/Carbo.
My last treatment was in March '07, but by May the CA started to creep up.
By October it was up to 40.
In November he did an exploratory laperoscopy; and found "salt & pepper" type 'flakes' of cancer... He was hoping to take a tissue sample to send to the lab, but couldn't get a big enough sample. Maybe you can ask your doctor about that. I understand that if they get a good sample, they can send it to a lab and test to see what chemo might work best.
So my 2nd chemo started in December '07, IP Chemo. That's the port in the stomach, putting Carboplatin directly into the abdomen, and Taxol into my regular port. I was hospitalized for those treatments. He had planned on 6 treatments, but after 5 of them my CA had dropped, so he cancelled that last treatment. I was very happy at the time; but looking back, I kind of wish we had done that last treatment anyway. (My CA was at 4.3)
That was in May, '08.
By October my CA was back up to 35 (my lab uses a 'normal' of 3.5-17.0).
By the way, he left that stomach port in, and I started having infections, so he removed it in November.
He didn't want to start chemo right away again; he wanted me to have some "quality time".
But I couldn't enjoy it, because I knew what was coming.
So for my 3rd round, I asked him for Gemzar alone, because I wanted to keep my hair.
He went along with it, but it didn't work for me. In fact, it made me very sick, and I ended up in the hospital with dehydration & fluid build-up. (twice in a few weeks). That was March of '09. 6 treatments; 3 weeks apart, but my labs didn't allow that. I think every treatment was delayed by a week or two. Gemzar is very hard on the bone marrow.
With the 2nd fluid build-up, I was very sick. In fact, I dropped from 125lbs down to 98.
I truly thought I was going to die. Both times I was hospitalized they removed 4 litres of fluid. So during that second hospitalization, he came in and said "we need to start a new chemo right away, even though you're weak, and it's going to be rough". I agreed, and
so for my 4th treatment I got
Taxol/Carbo + Avastin.
Avastin. Please ask your doctor and insurance for it! I started it in September '09. It was supposed to be 6 treatments 3 weeks apart, but again I had delays due to labs.
I think it's saved my life.
Avastin is a blood inhibitor that cuts off the blood supply to the cancer cells and so they die.
It gave me a few nose bleeds, runny nose, & severe headaches, but that is starting to subside now. (my last treatment was Feb 9th).
At first my CA actually started to CLIMB. I got very scared; it went up from 53 to 61, then 71 after 3 treatments. I asked if we should try something else, and he said "let's do 1 more". Well, after the 4th treatment, my CA dropped to 29!! (again with 17.0 being 'normal'). 5th treatment, CA 11.9, 6th treatment 6.1
A month later, still 6.1
My infusion nurse called me at home, she was SO excited! She said "do you know how great that is, that your CA stayed exactly the same?" (I had even called to make sure it wasn't a mistake!)
She told me that they are having a lot of success with Avastin. Many ladies are also on Avastin alone, 3 weeks apart.
My last treatment was Feb 9th. I'm still recovering, not much of an appetite at all, and still fatigued, but I'm here!! And I've got a cruise to Alaska at the end of May to look forward to. I go back for a check-up the end of June. So I'm on a 3-month hiatus from appointments & needles. (by the way, use port numbing cream for your blood-draws. Works GREAT!)
I hope all of this makes sense... I've got chemo-brain and it's getting late.
Best of luck to you, Nancy, and I'll be keeping you in my prayers.
I listen to a LOT of meditation/visualization cds when I go to bed, too, and sometimes during the day. It helps me mentally. I'm still only 115lbs, but trying to gain. (I'm 5'4"). Drinking a lot of soy protein powder mixed with whole milk when I can't eat.
Take care, and let me know if I can answer any questions at all.
And have Faith. God has gotten me this far, and He will help you, too.
~Susan xoxo
HI Susan, I am so happy for you that you are doing so well. I remember your very low times, and am very encouraged about the upswing. You are an inspiration to me to keep trying and going on.
Can I ask you if you know the dose of avastin you took? I can't get avastin in Japan, but when I got my tumors tested last fall, it was on of the best working agents. I am considering going to Malaysia to get it, and would like info from those that have used it.
Hugs,
kathleen0 -
Hi Kathleen,kayandok said:avastin
HI Susan, I am so happy for you that you are doing so well. I remember your very low times, and am very encouraged about the upswing. You are an inspiration to me to keep trying and going on.
Can I ask you if you know the dose of avastin you took? I can't get avastin in Japan, but when I got my tumors tested last fall, it was on of the best working agents. I am considering going to Malaysia to get it, and would like info from those that have used it.
Hugs,
kathleen
After my year
Hi Kathleen,
After my year and one month remission, I was then given a combination of doxil, carbo and avastin as part of a clinical trial study of avastin.
Avastin was used based upon it having the quality to literally kill off the blood supply to cancer cells/tumors thus ultimatly killing the tumors? I faired pretty well with this study however; I didn't use the avastin alone so it being a trial study; I can't even be sure of the dose.
All in all the doxil was harder on me than the avastin (I believe) and it all brought about a six-month remission period for me but to me that doesn't necessarily mean failure, because any remission is an extension of life.
Sharon0 -
Doxilkayandok said:avastin
HI Susan, I am so happy for you that you are doing so well. I remember your very low times, and am very encouraged about the upswing. You are an inspiration to me to keep trying and going on.
Can I ask you if you know the dose of avastin you took? I can't get avastin in Japan, but when I got my tumors tested last fall, it was on of the best working agents. I am considering going to Malaysia to get it, and would like info from those that have used it.
Hugs,
kathleen
Kathleen,
How is the Doxil working for you?0 -
Hi SusanSusan523 said:Hello, Nancy,
So sorry to hear of all you've gone through.
I was really scared about the possibility of a bowel protrusion with the Avastin. I did have diarrhea, but that was most likely from the Taxol/Carbo. I don't think that's listed as an Avastin side effect.
Surprisingly, I didn't have much vomiting during these treatments, except for the first one. I was extremely sick after that first treatment, but I think it was because I had had all of that fluid build-up & dehydration. During the remaining treatments, I would throw up for a day or two; and it wasn't that bad. It was odd. I would usually get sick about 3 days after treatment, but then it started hitting me about 3 weeks after treatment.
It became unpredictable.
The diarrhea/constipation goes back and forth with me, and it has done so since my initial
surgery (they removed parts of intestine & colon). I'm really tired of it; but so happy to
have baby wipes on hand at all times.
I hope that avastin might be an option for you now. It's very pricey, and I was very fortunate that my insurance covered it. In fact, my doctor was very surprised that they did. But now that it's gotten approval for ovarian cancer, I would think that most insurance companies would cover it now (?) I sure hope so. (My doctor had quoted $20,000. per treatment for the Avastin alone; but it didn't bill out that way on my insurance statement).
I think it was more like $13,000.00 .... such a bargain~
There is also information at avastin.com
Best of luck to you; and I'm here if you have any questions at all. I am having some visitors coming Wed-Sat, so I may be out of touch for a few days. You can also reach me at dogsmom@charter.net (sometimes my chemo-brain forgets to check in here).
Hang in there, girlfriend. We'll get through this together~
~Susan xoxo
Hi Susan,
I read this thread with great interest as my mother has recurrent Stage III UPSC and has just started her second-line chemo. (first surgery was followed by radiation and Carbo/Taxol)
The doctor initially wanted to use Ixempra and Avastin, but her insurance is denying the Avastin, so she is receiving only the Ixempra at this time. Both drugs are very new in treating uterine cancer and we were very hopeful that we'd see a response.
Based on your experience, I am really wanting to push the Avastin approval. Can I ask where you received your treatment?
~Al.0
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