Saw my dr. today. First recurrence after nine month complete remission.

mom2greatkids
mom2greatkids Member Posts: 528
cisplatin/taxol every 3 weeks for 6 rounds. He said he hopes he can put me back in remission. I am stage 3c clear cell. Any one had these drugs? What can I expect? Very upset and nervous, plus just MAD about it!!!

Since my kids lost their dad two yrs. ago, I want to live to see my daughter finish college (Dec. '13), both kids marry, (son, age 24 is talking about next yr. for he and his girl friend). I want to see grandkids!!

For crying out loud, I will turn 50 on August 20. I just completed my teaching certification. I want to be able to start living again....

Thanks Ladies,

Carla

Comments

  • Glad to be done
    Glad to be done Member Posts: 569
    Carla I did
    Carla I did cisplatin/taxol.... I too did six rounds. Do you have an I P port or are you getting one? I had the i p port put in the beginning of Feb and started treatment 3 weeks later. Hmm what to expect. Cisplatin causes your hair to fall out. This is how my cycle went : Day 1 (mon) I would have taxol in my regular port and cisplating in my ip port. Day 2 tues i went in for 2 liters of fluid. Then I was done for the week. Day 8 the following monday I went in for Taxol again this time in the IP port. I was then done for the remainder of that week and the next. Then onto the next round. Bonus with the IP port is you get a hospital bed for your treatment becase you need to roll from side to side every hour or so.

    Effects after the double dose - cisplatin will give you joint pain. My doc gave me pain meds for that because nothing over the counter worked. When I would get that heartburn coming on feeling I would take a nausea pill. I never threw up once from chemo. You will be wildly tired. I was super super tired but most times I couldn't sleep if that makes sense.I would have treatment on monday, the joint pain and tiredness would start Wednesday night and i was usally better by Sunday night. After the 2nd part of chemo I didn't really get any side effects. About wednesday I would take a 3 hour nap or so but that was about it.

    As with any chemo drink tons of water after so you don't dehydrate. I read one of the side effects is it can mess with hearing an vision. I didn't experience any of that. I did dehydrate after the first treatment so make sure you drink drink drink. My potassium and magnesium went very low so I was on potassium and magnesium pills twice a day.

    One hint I did find out AFTER the fact. I read it on here in the other gynelogical cancer boards. Someone said they had bad joint pain from the cisplatin and her doc recommended l-glutemine (a vitamin) and it took away just about all of the joint pain.


    Anything else you wanna know, just ask.
  • mom2greatkids
    mom2greatkids Member Posts: 528

    Carla I did
    Carla I did cisplatin/taxol.... I too did six rounds. Do you have an I P port or are you getting one? I had the i p port put in the beginning of Feb and started treatment 3 weeks later. Hmm what to expect. Cisplatin causes your hair to fall out. This is how my cycle went : Day 1 (mon) I would have taxol in my regular port and cisplating in my ip port. Day 2 tues i went in for 2 liters of fluid. Then I was done for the week. Day 8 the following monday I went in for Taxol again this time in the IP port. I was then done for the remainder of that week and the next. Then onto the next round. Bonus with the IP port is you get a hospital bed for your treatment becase you need to roll from side to side every hour or so.

    Effects after the double dose - cisplatin will give you joint pain. My doc gave me pain meds for that because nothing over the counter worked. When I would get that heartburn coming on feeling I would take a nausea pill. I never threw up once from chemo. You will be wildly tired. I was super super tired but most times I couldn't sleep if that makes sense.I would have treatment on monday, the joint pain and tiredness would start Wednesday night and i was usally better by Sunday night. After the 2nd part of chemo I didn't really get any side effects. About wednesday I would take a 3 hour nap or so but that was about it.

    As with any chemo drink tons of water after so you don't dehydrate. I read one of the side effects is it can mess with hearing an vision. I didn't experience any of that. I did dehydrate after the first treatment so make sure you drink drink drink. My potassium and magnesium went very low so I was on potassium and magnesium pills twice a day.

    One hint I did find out AFTER the fact. I read it on here in the other gynelogical cancer boards. Someone said they had bad joint pain from the cisplatin and her doc recommended l-glutemine (a vitamin) and it took away just about all of the joint pain.


    Anything else you wanna know, just ask.

    No, I do not have the IP
    No, I do not have the IP port. Did it take away your taste buds or appetite? I did well on the carbo/taxol/avastin last year. They did tell me today that they would be giving me more fluids than I had last year. Lots of exercise from going to the bathroom I suppose?


    Thanks for your help.

    Carla
  • 2timothy1 7
    2timothy1 7 Member Posts: 345

    No, I do not have the IP
    No, I do not have the IP port. Did it take away your taste buds or appetite? I did well on the carbo/taxol/avastin last year. They did tell me today that they would be giving me more fluids than I had last year. Lots of exercise from going to the bathroom I suppose?


    Thanks for your help.

    Carla

    Hi Carla
    I completed the

    Hi Carla
    I completed the same protocol Eileen described 2 months ago. It did make me feel very weak . The first week when both types of chemo are given was the worst --- very weak. The second week with the taxol only wasn't that bad at all for me.

    One thing that helped me tremendously was when home health started bringing me fluids to drip into my accessed port at home. When I left the infusion center, the nurses would leave my port attached to the short tubing so I could hook the saline up to it at home for a couple days. This helped me to stay hydrated when I started to feel weak.

    I only had a couple episodes where I was nauseated and threw up, however that was during the 5th and 6th rounds. Stay on track with the nausea meds. I took zofran.

    I don't know why but I couldn't sleep well and had to take Clonazepam to sleep at night. It may have been the steroids I took for premed the night before , hot flashes or just anxiety. I don't know for sure why but the Clonazepam helped me to finally get some sleep.

    This took my ca 125 from 3200 to 31.
    Best wishes to you,
    Shawnna
  • Glad to be done
    Glad to be done Member Posts: 569

    Hi Carla
    I completed the

    Hi Carla
    I completed the same protocol Eileen described 2 months ago. It did make me feel very weak . The first week when both types of chemo are given was the worst --- very weak. The second week with the taxol only wasn't that bad at all for me.

    One thing that helped me tremendously was when home health started bringing me fluids to drip into my accessed port at home. When I left the infusion center, the nurses would leave my port attached to the short tubing so I could hook the saline up to it at home for a couple days. This helped me to stay hydrated when I started to feel weak.

    I only had a couple episodes where I was nauseated and threw up, however that was during the 5th and 6th rounds. Stay on track with the nausea meds. I took zofran.

    I don't know why but I couldn't sleep well and had to take Clonazepam to sleep at night. It may have been the steroids I took for premed the night before , hot flashes or just anxiety. I don't know for sure why but the Clonazepam helped me to finally get some sleep.

    This took my ca 125 from 3200 to 31.
    Best wishes to you,
    Shawnna

    Carla you should ask you doc
    Carla you should ask you doc about the I P port.... It is right in your abdomen under the skin and it allows the chemo to go directlty to your abdomen......
  • Tethys41
    Tethys41 Member Posts: 1,382 Member

    Carla you should ask you doc
    Carla you should ask you doc about the I P port.... It is right in your abdomen under the skin and it allows the chemo to go directlty to your abdomen......

    IP port
    I'm not 100% sure about this, but I think the IP option is only used for first line chemo. They don't offer it to first line patients who have suboptimal debulking, so I doubt it is available for a recurrance where surgery is not part of the treatment.
  • mom2greatkids
    mom2greatkids Member Posts: 528

    Carla you should ask you doc
    Carla you should ask you doc about the I P port.... It is right in your abdomen under the skin and it allows the chemo to go directlty to your abdomen......

    My recurrence was outside
    My recurrence was outside the abdominal area. strange....
  • Mwee
    Mwee Member Posts: 1,338
    Dear Carla
    Sure you're mad, who wouldn't be. You've been here before, but this time you're going in armed with more knowledge. I've been on cisplatin for a long time and I can tell you that it can be rough on the kidneys so I get a full bag of saline before and after infusion. I try to drink lots of liguids in the days following your infusion. I have terrible constipation after my infusions and have to try to stay on top of that.

    I know how you feel about wanting to be there. I have three granddaughters and want them to remember me and how much I love and support them. I've been chemoing for my recurrance for a long time and it's a pain in the butt to say the least. But, it's allowed me to be there for all those special days. Fight on!
    ((((HUGS))) Maria
  • Mwee
    Mwee Member Posts: 1,338
    Dear Carla
    Sorry double post
  • angfay30
    angfay30 Member Posts: 3

    Carla I did
    Carla I did cisplatin/taxol.... I too did six rounds. Do you have an I P port or are you getting one? I had the i p port put in the beginning of Feb and started treatment 3 weeks later. Hmm what to expect. Cisplatin causes your hair to fall out. This is how my cycle went : Day 1 (mon) I would have taxol in my regular port and cisplating in my ip port. Day 2 tues i went in for 2 liters of fluid. Then I was done for the week. Day 8 the following monday I went in for Taxol again this time in the IP port. I was then done for the remainder of that week and the next. Then onto the next round. Bonus with the IP port is you get a hospital bed for your treatment becase you need to roll from side to side every hour or so.

    Effects after the double dose - cisplatin will give you joint pain. My doc gave me pain meds for that because nothing over the counter worked. When I would get that heartburn coming on feeling I would take a nausea pill. I never threw up once from chemo. You will be wildly tired. I was super super tired but most times I couldn't sleep if that makes sense.I would have treatment on monday, the joint pain and tiredness would start Wednesday night and i was usally better by Sunday night. After the 2nd part of chemo I didn't really get any side effects. About wednesday I would take a 3 hour nap or so but that was about it.

    As with any chemo drink tons of water after so you don't dehydrate. I read one of the side effects is it can mess with hearing an vision. I didn't experience any of that. I did dehydrate after the first treatment so make sure you drink drink drink. My potassium and magnesium went very low so I was on potassium and magnesium pills twice a day.

    One hint I did find out AFTER the fact. I read it on here in the other gynelogical cancer boards. Someone said they had bad joint pain from the cisplatin and her doc recommended l-glutemine (a vitamin) and it took away just about all of the joint pain.


    Anything else you wanna know, just ask.

    Is Cisplatin the same as Carboplatin
    I have just done my 1st of 3 rounds of chemo and I am taking Taxol/Carboplatin I had it on the 27th and just today got out of the hospital after suffering servere pain in my legs especially my joints?
  • mom2greatkids
    mom2greatkids Member Posts: 528
    Mwee said:

    Dear Carla
    Sure you're mad, who wouldn't be. You've been here before, but this time you're going in armed with more knowledge. I've been on cisplatin for a long time and I can tell you that it can be rough on the kidneys so I get a full bag of saline before and after infusion. I try to drink lots of liguids in the days following your infusion. I have terrible constipation after my infusions and have to try to stay on top of that.

    I know how you feel about wanting to be there. I have three granddaughters and want them to remember me and how much I love and support them. I've been chemoing for my recurrance for a long time and it's a pain in the butt to say the least. But, it's allowed me to be there for all those special days. Fight on!
    ((((HUGS))) Maria

    So Maria,
    cisplatin has done the job for you? Have you achieved remission? My dr. is hoping for another remission, but doesn't seem overly optimistic. I am stage 3c clear cell. I am determined, just sick and tired of battling this. When I had my recurrence, it was just like my husband dying all over again. Oh how I miss him!!

    Carla
  • Mwee
    Mwee Member Posts: 1,338

    So Maria,
    cisplatin has done the job for you? Have you achieved remission? My dr. is hoping for another remission, but doesn't seem overly optimistic. I am stage 3c clear cell. I am determined, just sick and tired of battling this. When I had my recurrence, it was just like my husband dying all over again. Oh how I miss him!!

    Carla

    cisplatin/gemzar
    is keeping me stable, but my disease is cronic and will need to be continually treated. My last scan showed my hot spots had reduced by 2/3s and my CA-125s stay stable and vary slightly from one month to the next. I consider this a major victory because of what we discussed in the last post. I want to be there to share in my families big and small moments. I so wish for remission for you... hang tough.
    ((((HUGS)))) Maria
  • Glad to be done
    Glad to be done Member Posts: 569
    Mwee said:

    Dear Carla
    Sorry double post

    Cisplatin/taxol did the job
    Cisplatin/taxol did the job for me. I hope it works the same for you.
  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member

    So Maria,
    cisplatin has done the job for you? Have you achieved remission? My dr. is hoping for another remission, but doesn't seem overly optimistic. I am stage 3c clear cell. I am determined, just sick and tired of battling this. When I had my recurrence, it was just like my husband dying all over again. Oh how I miss him!!

    Carla

    Work through those feelings
    Work through those feelings Carla....you have to do it, then come out fighting again. You made it the first time with your children younger and a fresh loss of your husband. Your stronger from all of that experience. You can do this. And you keep coming back for us to help support you. Kim