waiting for ca125 results, on topotecan

garden gal
garden gal Member Posts: 212 Member
in Ovarian Cancer #1
Started my third round of topotecan yesterday, and will go all week. Dr did a ca125 yesterday, little nervous about this one. Chemo has been ongoing without a break for a year now. Before starting topo they did a ca125 and was 320 down from over 900 while on carbo. Had to stop carbo because of a severe reaction took several hours to pull me out of it.So thats when we went on topo. Usually with all the numerous ca125's done over the past 2 yrs, I just say to myself what will be will be and I will handle what ever it is, but this one has been weighing very heavy on me. Maybe because it's been so long and in the past year I was so close to remission a couple of times. I'm usualy very strong, has anyone got to the point where they say I'm tired? I'm hoping as the day goes on I will feel a little better. Thanks Kathy
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Comments

  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #2
    Garden gal
    My prays are with you as I am up at 3:35am after round four of taxol/carbo and advastin. I am only starting my fight and nights like tonight make me want to stop. I am in so much bone pain, upset stomach, and the heartburn. It may sound a little childish but I wish we were all done with the cancer. You have been fighting for two years so it makes it hard for me to complain I have only been going through it for a few months but I do understand you frustation. I will be praying for you and if you would pray for me.

    Anne
  • garden gal
    garden gal Member Posts: 212 Member
    #3
    AnneBehymer said:

    Garden gal
    My prays are with you as I am up at 3:35am after round four of taxol/carbo and advastin. I am only starting my fight and nights like tonight make me want to stop. I am in so much bone pain, upset stomach, and the heartburn. It may sound a little childish but I wish we were all done with the cancer. You have been fighting for two years so it makes it hard for me to complain I have only been going through it for a few months but I do understand you frustation. I will be praying for you and if you would pray for me.

    Anne

    It's not childish
    when you go through something like this. comlain all you want. I know that in the beginning of my journey I just keeped telling myself I refuse to let this cancer eat at my days the way it's eating at my body. So I would make a list each morning and write down things I wanted to do, trust me nothing heroic.Find a new recipe, plan what I wanted to do in garden if possible, look forward to my children visiting, I could go on forever. When I was taxol/carbo I too had bone pain, dr stared with tylenol, that was a joke, went onto a steroid that helped tremendously don't remember the name will have to look it up in my journal. I was lucky no nausea or upset stomach. Did have many many sleepless nights. the dr prescribe a sleeping pill but never took it. Would get up and do a puzzle, watch tv anything that would get me through the night. But I have to tell you I'd look out my windows in the wee hours of the night and saw some of my neighbors lights on and thought what are they doing up a this hour, whats there story. Felt like i wasn't alone. Sorry I'm rambling. Heartburn I'm on previcid and it does the trick for me. talk to the dr about getting that under control, at least it could be one more issue off your list.For most of the time I'm pretty possitive obout my days and try not to think about the future. Have to go and get ready for chemo will check back later, maybe I will have some good news about my numbers. Kathy
  • antcat
    antcat Member Posts: 270
    #4
    Dear Kathy
    I'm going through the same thing as you. My third round of chemo was also Topotecan, along with Avastin. I also have not had a break for a year and last year also had a reaction to Carbo so now I can't get Carbo. The oncologist only did 2 cycles of Topotecan with me because my tumors still showed a little growth. I know I'm not a dr. but in the past I was always told that in order to see if a chemotherapy is working, they need to allow it time to get in your system. I didn't think 2 cycles was enough time but he took me off of it and is now trying just Taxotere, so this is the 4th straight chemo for me with no break. I spoke to the oncologist last month and let him know if this chemo doesn't work, I need a break. He tells me, he could give me a 2 week break, I wanted to laugh, just what will 2 weeks do for me. I was thinking more of a 1 month break. My body needs some time to heal a little. So, yes I have gotten to the point of saying "I'm tired." And, I can truly understand where you're coming from. Please try to hang in there & I wish you luck with the Topotecan. By the way, are you just getting the Topotecan. How often do you get it. I was on Avastin & Topotecan week 1, then just Topotecan week 2 & 3.
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #5
    garden gal said:

    It's not childish
    when you go through something like this. comlain all you want. I know that in the beginning of my journey I just keeped telling myself I refuse to let this cancer eat at my days the way it's eating at my body. So I would make a list each morning and write down things I wanted to do, trust me nothing heroic.Find a new recipe, plan what I wanted to do in garden if possible, look forward to my children visiting, I could go on forever. When I was taxol/carbo I too had bone pain, dr stared with tylenol, that was a joke, went onto a steroid that helped tremendously don't remember the name will have to look it up in my journal. I was lucky no nausea or upset stomach. Did have many many sleepless nights. the dr prescribe a sleeping pill but never took it. Would get up and do a puzzle, watch tv anything that would get me through the night. But I have to tell you I'd look out my windows in the wee hours of the night and saw some of my neighbors lights on and thought what are they doing up a this hour, whats there story. Felt like i wasn't alone. Sorry I'm rambling. Heartburn I'm on previcid and it does the trick for me. talk to the dr about getting that under control, at least it could be one more issue off your list.For most of the time I'm pretty possitive obout my days and try not to think about the future. Have to go and get ready for chemo will check back later, maybe I will have some good news about my numbers. Kathy

    my prays are with you
    I am praying for you now that your numbers go down and in the fast way :). I have had problems with sleeping but I have always have had a problem. I am on trazadome 150 mg a night to help me sleep see how good it is working lol. For the pain I am on morphine 3x day, tramadol 2x day, ibuprfen 3x day, and oxycodone as needed and I have needed it. I think the chemo is making my fybormyalga and arthrites (sorry the spelling chemo brian) worst so that is why the pain seems so bad. I will check back later and see how your numbers are going.

    Anne
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #6
    antcat said:

    Dear Kathy
    I'm going through the same thing as you. My third round of chemo was also Topotecan, along with Avastin. I also have not had a break for a year and last year also had a reaction to Carbo so now I can't get Carbo. The oncologist only did 2 cycles of Topotecan with me because my tumors still showed a little growth. I know I'm not a dr. but in the past I was always told that in order to see if a chemotherapy is working, they need to allow it time to get in your system. I didn't think 2 cycles was enough time but he took me off of it and is now trying just Taxotere, so this is the 4th straight chemo for me with no break. I spoke to the oncologist last month and let him know if this chemo doesn't work, I need a break. He tells me, he could give me a 2 week break, I wanted to laugh, just what will 2 weeks do for me. I was thinking more of a 1 month break. My body needs some time to heal a little. So, yes I have gotten to the point of saying "I'm tired." And, I can truly understand where you're coming from. Please try to hang in there & I wish you luck with the Topotecan. By the way, are you just getting the Topotecan. How often do you get it. I was on Avastin & Topotecan week 1, then just Topotecan week 2 & 3.

    dear antcat
    You will be in my prays also as you walk this walk none of us want to be on I am so sorry for what you are going through and you would think they would need more than two times to see if it is going to work. I pray God shows them the right medication so you can enter into remission I read post like the two of you and wonder will I be going through in for a year and it just hurts me to realize how much this beast takes from us each day and how long it can go on so you both will be in my daily prays

    Anne
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #7
    Topotecan too
    I started Topotecan yesterday. I will go all week and then have 3 weeks off. I am told this will take 6 months. I am really hoping it works for me. I have already had 2 lots of carbo/taxol and they are now trying me on something very different. The closest I ever got to remission was when my numbers dipped to 34 for a few months.

    I have read all the posts and I only thought the yesterday "how much longer can you go on for?" I was sitting in the chemo clinic having my chemo with a "cold cap" on (that is another story I will come to shortly) thinking "I've got to come here everyday this week and go home and think about coming again tomorrow." It is hard sometimes as we know it is not going to cure us. As a human being we can cope with most things if we know it will benefit us but yesterday I didn't think like that and thought it was all pointless.

    The cold cap. Not sure if you have heard of it before, but it is something we have here in the UK that prevents hair loss. I have lost my hair twice before and I am desperate not to lose it a third time. You put this gel cap on that has been in the freezer and it is supposed to prevent hair loss. Not sure how it works but I guess the coldness prevents damage to the roots of the hair folicle. Well the pain of the ice inside the cap is excruitating and it takes a good 5 mins to wear off. So in about an hour I will be all wired up with the cold cap on my head. And if that is not bad enough, I will have to go through it all again Wednesday, Thursday and Friday.

    Just hoping it all works and you never know, one day we will find a chemo that brings our numbers right down to 0.

    Love Tina xx
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #8
    Tina Brown said:

    Topotecan too
    I started Topotecan yesterday. I will go all week and then have 3 weeks off. I am told this will take 6 months. I am really hoping it works for me. I have already had 2 lots of carbo/taxol and they are now trying me on something very different. The closest I ever got to remission was when my numbers dipped to 34 for a few months.

    I have read all the posts and I only thought the yesterday "how much longer can you go on for?" I was sitting in the chemo clinic having my chemo with a "cold cap" on (that is another story I will come to shortly) thinking "I've got to come here everyday this week and go home and think about coming again tomorrow." It is hard sometimes as we know it is not going to cure us. As a human being we can cope with most things if we know it will benefit us but yesterday I didn't think like that and thought it was all pointless.

    The cold cap. Not sure if you have heard of it before, but it is something we have here in the UK that prevents hair loss. I have lost my hair twice before and I am desperate not to lose it a third time. You put this gel cap on that has been in the freezer and it is supposed to prevent hair loss. Not sure how it works but I guess the coldness prevents damage to the roots of the hair folicle. Well the pain of the ice inside the cap is excruitating and it takes a good 5 mins to wear off. So in about an hour I will be all wired up with the cold cap on my head. And if that is not bad enough, I will have to go through it all again Wednesday, Thursday and Friday.

    Just hoping it all works and you never know, one day we will find a chemo that brings our numbers right down to 0.

    Love Tina xx

    Dear Tina,
    I will be praying
    Dear Tina,

    I will be praying for you all week I really don't think I could handle going every day I was to go today for my blood drive and have had to reschedule it because I had treatment on Thursday. I could not even dream of going every day. You will be in my prays every day this week.

    Anne
  • wfisaac
    wfisaac Member Posts: 60
    #9
    Can I ask you ladies who
    Can I ask you ladies who said you had a reaction to the Carbo, was it immediately or later in your treatments? I had a very bad reaction on my 6th round of it and the nurse told me that was quite typical to not have any reactions until about the 6th time. It sure scared me. I thought for sure that was my last day on earth. And I think I feel some anxiety when I think of the possibility of doing more chemo in light of what happened.


    I'm really hoping you'll have a good report on your numbers, garden gal.
  • garden gal
    garden gal Member Posts: 212 Member
    #10
    wfisaac said:

    Can I ask you ladies who
    Can I ask you ladies who said you had a reaction to the Carbo, was it immediately or later in your treatments? I had a very bad reaction on my 6th round of it and the nurse told me that was quite typical to not have any reactions until about the 6th time. It sure scared me. I thought for sure that was my last day on earth. And I think I feel some anxiety when I think of the possibility of doing more chemo in light of what happened.


    I'm really hoping you'll have a good report on your numbers, garden gal.

    numbers are down
    Sorry I haven't responded sooner having trouble with password. Numbers before starting topo was 320 down now to 304, not much but I'll take it. this is my 6th chemo drug this year. Dr is also talking time off for me too, but not just yet, will finish this round of topo ( alone no other drug with it ) and maybe a 4th round every day for a week and then 3 weeks off. another ca125 will be done at that point if numbers look half way decent she will give me some time off and get ready for taxo.( generic for carbo). When I had the reaction to carbo it was my 8th treament and it happened 5 minutes into the infus. Started with taxol/carbo 2 years ago and was told that enough time had passed to try the carbo. If a reaction was to happened it would happened as soon as we tried again with carbo.Sorry to say it did it was anaphylaxis shock. thanks to all the nurses and dr's that came to my aid they pulled me out of it. too bad I couldn't continue with it at the start of carbo my numbers 935 after one infus. they did a ca125 numbers were down to 320 go figure. Thanks for all the prays and I hope everyone knows How much I think of all you wonderful ladies, as I said before I have visited this site for 2 years before posting and have learned so much.Hope I have answered all the questions and just wanted to add I really don't mind the everyday infus. mostly because I have some great friends now at the cancer center and it's turned out to be a social time for all of us, we laugh, talk about the latest news in our lives, sometimes we cry, all of which is very comforting to me, kind of like group therapy.I am now very friendly with a lot of the nurses and and we get together whenever possible.Have a great day, hang in there This is a roller coaster ride we are on fear when numbers go up and excitement when the numbers come down. Kathy
  • garden gal
    garden gal Member Posts: 212 Member
    #11
    garden gal said:

    numbers are down
    Sorry I haven't responded sooner having trouble with password. Numbers before starting topo was 320 down now to 304, not much but I'll take it. this is my 6th chemo drug this year. Dr is also talking time off for me too, but not just yet, will finish this round of topo ( alone no other drug with it ) and maybe a 4th round every day for a week and then 3 weeks off. another ca125 will be done at that point if numbers look half way decent she will give me some time off and get ready for taxo.( generic for carbo). When I had the reaction to carbo it was my 8th treament and it happened 5 minutes into the infus. Started with taxol/carbo 2 years ago and was told that enough time had passed to try the carbo. If a reaction was to happened it would happened as soon as we tried again with carbo.Sorry to say it did it was anaphylaxis shock. thanks to all the nurses and dr's that came to my aid they pulled me out of it. too bad I couldn't continue with it at the start of carbo my numbers 935 after one infus. they did a ca125 numbers were down to 320 go figure. Thanks for all the prays and I hope everyone knows How much I think of all you wonderful ladies, as I said before I have visited this site for 2 years before posting and have learned so much.Hope I have answered all the questions and just wanted to add I really don't mind the everyday infus. mostly because I have some great friends now at the cancer center and it's turned out to be a social time for all of us, we laugh, talk about the latest news in our lives, sometimes we cry, all of which is very comforting to me, kind of like group therapy.I am now very friendly with a lot of the nurses and and we get together whenever possible.Have a great day, hang in there This is a roller coaster ride we are on fear when numbers go up and excitement when the numbers come down. Kathy

    sorry Anne to hear of all the pain your in
    I'm on tramadol for my lower back ostero/arthritis It used to work real good but now I have a lot pain If I over do it. Dr prescribed vicadin, didn't help much so I now just lay down for a while or just sit and relax a littl bit and it seems to help a lot. I guess I'm kinda lucky there. Pain can really ruin your days. Hope as time goes on things ease up for you. In the beginning when I had my hyster. when they went to take out the staples the wound opened up 24" long and 13" wide 4" deep, it did not heal due to the ascites and low protein levels. They could not close the wound with stiches or staples. so the wound was packed and had to be repacked everyday twice a day. So thats when 8 months with visiting nurses coming to my house to care for my wound started and weekly visits to the wound care institute started.After that with help of my husband we started cleaning and reaplying the dressings ourself, we had a lot of training for this. After 3 months a wound vac was put on me and lived with that for almost 5 months. It healed the wound from the inside. Due to all the chemo I have had it still is not healed. A layer of skin has not grown over the wound yet and highly unlikly it will. So here I am 2 years later still going to wound care and 2 times a day speacial dressings are applied and all the pads and gauze needed to protect this wound. Sad to say my stomach is in 2 sections because of the way it healed from the inside. I truely don't even think about it anymore it's been so long. I have no discomfort from it except I'm not allowed to bend anymore so you can imagine what that means. Sometimes I laugh so hard because of all the times I drop something and before I got this grabber my husband would come home and had to pick up everything I dropped. Thinking of you and everyone else. try and have a better day. I feel a lot better today. Kathy
  • antcat
    antcat Member Posts: 270
    #12
    wfisaac said:

    Can I ask you ladies who
    Can I ask you ladies who said you had a reaction to the Carbo, was it immediately or later in your treatments? I had a very bad reaction on my 6th round of it and the nurse told me that was quite typical to not have any reactions until about the 6th time. It sure scared me. I thought for sure that was my last day on earth. And I think I feel some anxiety when I think of the possibility of doing more chemo in light of what happened.


    I'm really hoping you'll have a good report on your numbers, garden gal.

    Carbo reaction
    I had Carbo twice, a year apart. First time just initially experienced a little nasal congestion, and redness, but dr. gave me benedryl right away and it cleared it up. 2nd time, no problems at all. 3rd time, got thru 2 cycles, got allergic reaction, got very congested and face turned red, but got benedryl and wanted to try it again. On 3rd cycle, got very congested, hands and bottoms of feet turned red, and had developed hives on my arms. So, Carbo was stopped completely and I haven't received Carbo in over a year. They say once you go off it for awhile, a person may be able to go back on it. I don't know, that's just what they say.
  • garden gal
    garden gal Member Posts: 212 Member
    #13
    antcat said:

    Carbo reaction
    I had Carbo twice, a year apart. First time just initially experienced a little nasal congestion, and redness, but dr. gave me benedryl right away and it cleared it up. 2nd time, no problems at all. 3rd time, got thru 2 cycles, got allergic reaction, got very congested and face turned red, but got benedryl and wanted to try it again. On 3rd cycle, got very congested, hands and bottoms of feet turned red, and had developed hives on my arms. So, Carbo was stopped completely and I haven't received Carbo in over a year. They say once you go off it for awhile, a person may be able to go back on it. I don't know, that's just what they say.

    carbo reaction
    1st time I took it no reaction, 2nd time over a year apart thats when the reaction happened. I was told the same thing once your off it for a while you may be able to have it again, but that proved wrong in my case.They give me benedryl too with most of the drugs I've been on. Makes me very sleepy and I get restless legs from it. Just got home from my 3rd infusion of topo, feeling really good. My reaction on carbo was quite scary started with tingling in my mouth, throat closed and couldn't breath, don't remember too much after that but they tell me I turned beat red in no time at all. Vital signs where at the dangerous levels, thank god for all of them that helped me get through it. Kathy
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #14
    garden gal said:

    carbo reaction
    1st time I took it no reaction, 2nd time over a year apart thats when the reaction happened. I was told the same thing once your off it for a while you may be able to have it again, but that proved wrong in my case.They give me benedryl too with most of the drugs I've been on. Makes me very sleepy and I get restless legs from it. Just got home from my 3rd infusion of topo, feeling really good. My reaction on carbo was quite scary started with tingling in my mouth, throat closed and couldn't breath, don't remember too much after that but they tell me I turned beat red in no time at all. Vital signs where at the dangerous levels, thank god for all of them that helped me get through it. Kathy

    have never been on topecan
    but I pray for your numbers to come down..val
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #15
    garden gal said:

    sorry Anne to hear of all the pain your in
    I'm on tramadol for my lower back ostero/arthritis It used to work real good but now I have a lot pain If I over do it. Dr prescribed vicadin, didn't help much so I now just lay down for a while or just sit and relax a littl bit and it seems to help a lot. I guess I'm kinda lucky there. Pain can really ruin your days. Hope as time goes on things ease up for you. In the beginning when I had my hyster. when they went to take out the staples the wound opened up 24" long and 13" wide 4" deep, it did not heal due to the ascites and low protein levels. They could not close the wound with stiches or staples. so the wound was packed and had to be repacked everyday twice a day. So thats when 8 months with visiting nurses coming to my house to care for my wound started and weekly visits to the wound care institute started.After that with help of my husband we started cleaning and reaplying the dressings ourself, we had a lot of training for this. After 3 months a wound vac was put on me and lived with that for almost 5 months. It healed the wound from the inside. Due to all the chemo I have had it still is not healed. A layer of skin has not grown over the wound yet and highly unlikly it will. So here I am 2 years later still going to wound care and 2 times a day speacial dressings are applied and all the pads and gauze needed to protect this wound. Sad to say my stomach is in 2 sections because of the way it healed from the inside. I truely don't even think about it anymore it's been so long. I have no discomfort from it except I'm not allowed to bend anymore so you can imagine what that means. Sometimes I laugh so hard because of all the times I drop something and before I got this grabber my husband would come home and had to pick up everything I dropped. Thinking of you and everyone else. try and have a better day. I feel a lot better today. Kathy

    Garden gal
    wow you have been through a lot and sound so good I think I would be a basket case by now. Your strength gives me hope hand in there you are always in my prays

    Anne
  • AnneBehymer
    AnneBehymer Member Posts: 738 Member
    #16
    garden gal said:

    carbo reaction
    1st time I took it no reaction, 2nd time over a year apart thats when the reaction happened. I was told the same thing once your off it for a while you may be able to have it again, but that proved wrong in my case.They give me benedryl too with most of the drugs I've been on. Makes me very sleepy and I get restless legs from it. Just got home from my 3rd infusion of topo, feeling really good. My reaction on carbo was quite scary started with tingling in my mouth, throat closed and couldn't breath, don't remember too much after that but they tell me I turned beat red in no time at all. Vital signs where at the dangerous levels, thank god for all of them that helped me get through it. Kathy

    taxol
    That is the kind of reaction I had to taxol. Only on the first time of use now they start me off slow and my body can handle it.

    Anne
  • garden gal
    garden gal Member Posts: 212 Member
    #17
    AnneBehymer said:

    taxol
    That is the kind of reaction I had to taxol. Only on the first time of use now they start me off slow and my body can handle it.

    Anne

    doing good
    Thanks for all the prays and support. I take it a day at a time, we've all been through a lot. Really lets us know just how strong you can be. I think I get my strength from my mother who I lost last oct. What a women, she truly was an inspiration to me all my life. Always in awe of her on how she handled so many tragedies in her life. Buried a husband and three children. Still miss her something awful. Kathy
  • barbiete
    barbiete Member Posts: 3
    #18
    topotecan
    I was diagnosed April 15, 2010. Had 3 chemo treatments (carbo and taxol), then major surgery and 3 more of the chemo treatments. Last chemo Sept. 29, 2010. My CA-125 was 35. I was so happy. It was monitored and slowly started to rise again. By mid-March it was over 300 and oncologist wanted me to start Topotecan. I had a port put in and started the Topo the end of March. By then, my CA-125 was 465. I have Topo every week since then. My numbers went slowly down and 6 weeks ago they were at 330, it had been a slow,steady decline. Three weeks ago it went up to 370. I have also been experiencing cramps and having to have bowel movements after I eat. Very uncomfortable. Also, have a much harder time finding something to eat. I never had any side effects from the carbo and taxol, it was really great. My only effect was hair loss. Now I think I am experiencing quite a bit of side effects with the topo. Anyway back to the oncologist on Thursday and hope my numbers have not increased. I wish you well and hope that your numbers stay low.
  • barbiete
    barbiete Member Posts: 3
    #19
    topotecan
    I was diagnosed April 15, 2010. Had 3 chemo treatments (carbo and taxol), then major surgery and 3 more of the chemo treatments. Last chemo Sept. 29, 2010. My CA-125 was 35. I was so happy. It was monitored and slowly started to rise again. By mid-March it was over 300 and oncologist wanted me to start Topotecan. I had a port put in and started the Topo the end of March. By then, my CA-125 was 465. I have Topo every week since then. My numbers went slowly down and 6 weeks ago they were at 330, it had been a slow,steady decline. Three weeks ago it went up to 370. I have also been experiencing cramps and having to have bowel movements after I eat. Very uncomfortable. Also, have a much harder time finding something to eat. I never had any side effects from the carbo and taxol, it was really great. My only effect was hair loss. Now I think I am experiencing quite a bit of side effects with the topo. Anyway back to the oncologist on Thursday and hope my numbers have not increased. I wish you well and hope that your numbers stay low.
  • garden gal
    garden gal Member Posts: 212 Member
    #20
    barbiete said:

    topotecan
    I was diagnosed April 15, 2010. Had 3 chemo treatments (carbo and taxol), then major surgery and 3 more of the chemo treatments. Last chemo Sept. 29, 2010. My CA-125 was 35. I was so happy. It was monitored and slowly started to rise again. By mid-March it was over 300 and oncologist wanted me to start Topotecan. I had a port put in and started the Topo the end of March. By then, my CA-125 was 465. I have Topo every week since then. My numbers went slowly down and 6 weeks ago they were at 330, it had been a slow,steady decline. Three weeks ago it went up to 370. I have also been experiencing cramps and having to have bowel movements after I eat. Very uncomfortable. Also, have a much harder time finding something to eat. I never had any side effects from the carbo and taxol, it was really great. My only effect was hair loss. Now I think I am experiencing quite a bit of side effects with the topo. Anyway back to the oncologist on Thursday and hope my numbers have not increased. I wish you well and hope that your numbers stay low.

    topo
    Just finished my 3rd topo treament, 5 days on 3 weeks off. I just started to have problems with bowels. Everytime I eat I have to go to the bathroom, no cramps or hair loss. Sleeping good except for the trips to the bathroom,small price to pay. My numbers are coming down slowly, Dr wants to do one more treament and then another ca125 and scan and maybe just maybe I can have some time off from chemo. It's been over a year nonstop chemo not counting the first year of treament. Not sure yet about this time off, kinda scary, just talking about it right now. Kathy
  • carolenk
    carolenk Member Posts: 907 Member
    #21
    garden gal said:

    topo
    Just finished my 3rd topo treament, 5 days on 3 weeks off. I just started to have problems with bowels. Everytime I eat I have to go to the bathroom, no cramps or hair loss. Sleeping good except for the trips to the bathroom,small price to pay. My numbers are coming down slowly, Dr wants to do one more treament and then another ca125 and scan and maybe just maybe I can have some time off from chemo. It's been over a year nonstop chemo not counting the first year of treament. Not sure yet about this time off, kinda scary, just talking about it right now. Kathy

    Wound still not healed? Yikes!
    Dear Kathy

    I am really surprised and dismayed to read that you are still dealing with a wound that has not healed.

    In my opinion, your difficulty getting into remission is connected to your poor wound healing by the same underlying problem: low albumen level. I don't know if your doctor is even aware that you could be on an amino acid infusion (Aminosyn) that would boost your albumen level and encourage wound healing AND promote your immune defenses against cancer.

    My integrative physician prescribed the Aminosyn 3% infusion for me when I was really ill and I think I recovered so quickly because I had that extra nutritional support. It is an eight-hour infusion that runs on a pump so you would need to have a port to do the infusions 2-3 times/week. My insurance covered the treatment--the diagnositic code was for "malnutrition."

    "Hydrazine sulfate" would help your liver to make the albumen that your body so desperately needs to heal your open wound. I have taken hydrazine sulfate myself. Cancer secretes something that blocks the liver's ability to make albumen--hydrazine sulfate corrects that. I don't know if you have the finaincial reserves or even the inclination to see a doctor that specializes in integrative medicine/cancer care who could guide you as your situation is reaching a critical point where you need all the extra help you can get.

    My greatest concern for you is that you are at a very high risk for sepsis (systemic infection) as you have had multiple rounds of chemo causing your immune system to be comprimised AND you have an unhealed wound.

    I think you should have a "blood chemisry" drawn. In that test, you will have the albumen level measured. If it is 50 or above (some labs would report it as 5.0) or even close to that, then disregard my comments. TPN is an option that some of the women on this discussion board have done but you don't need the sugar & fat that goes along with the amino acids in the TPN--you just need the amino acids.

    Hoping for the best outcome for you,

    Carolen

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