My treatment plan...

frodolass
frodolass Member Posts: 32
edited September 2013 in Uterine Cancer #1

Okay, met with the doctor today. He told me that I was the hot topic at their latest meeting. This is what they've got planned for me.

6 weeks of radiation therapy daily along with weekly chemo with the drug Cisplatin. Then, a 3-4 week break after which we would begin 4 rounds (every three weeks) with Taxol/Carbo (maybe Carboplatin?)...he abbreviated here, so not sure.

I really wasn't wanting to have chemo and radiation together, but they seem to think that's what I need. I'm willing to do what it takes.

I finally was told my stage: IIb (UPSC).

Any input would be helpful!

Thanks!

Donna

 

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Comments

  • cheerful
    cheerful Member Posts: 261 Member

    Hi Donna:

     

        Your treatment plan sounds really good. Your oncologist wants to attack the cancer hard and aggressively which is excellent.  I was diagnosed with Stage 1 of UPSC (a 5 centimeter polyp) in February of 2011 and had 6 rounds of carboplatin/taxol and also 3 rounds of brachytherapy.  My oncologist wanted to attack my cancer aggressively also. With the chemo, I made out well with it and had constipation, some loss of appetite I could only have 2 meals a day rather than 3 for a few days, and I also had a Neulasta shot and blood transfusion after my 5th chemo treatment. So far, I remain without evidence of disease after 2 1/2 years of diagnosis for which I am Very grateful and thankful and I hope to remain without evidence of disease for the future.  I have changed my eating habits for the better and am now eating a lot healthier

        I live in the Northeast section of the country outside of Philadelphia, PA.

         My oncologist is nationally known and knows a lot about UPSC and is very knowledgeable and has over 35 years of experience in his field.

         One of the hardest things was going through your hair loss, but I immediately went out and bought a wig about a month after I met with my oncologist so I had the wig before the chemo started.  All my hair started falling out the end of April of 2011 and I had my first chemo treatment on April 14th.

        I have a friend that also had Stage 2 B of UPSC and she was diagnosed the end of 2007 and she has now passed her 5 year mark and has remained with NO evidence of disease so she is pretty much cancer free.

       Good luck with your chemo treatments and also your radiation treatments.  

      Please keep us ladies posted here and let us know how you are doing going through your treatments.

    Cheerful

    a/k/a Jane

     

     

     

     

     

     

  • frodolass
    frodolass Member Posts: 32
    CA-125

    Got my first CA-125 results: 10.8. That's pretty good, isn't it? What is CA-125. I've read you all talking about it in other threads.

    Donna

     

  • cheerful
    cheerful Member Posts: 261 Member
    frodolass said:

    CA-125

    Got my first CA-125 results: 10.8. That's pretty good, isn't it? What is CA-125. I've read you all talking about it in other threads.

    Donna

     

    Hi Donna:

     

      The CA 125 is a blood test - any results below the number 35 is considered Normal.  Your number 10.8 is very good.

     

    Cheerful

    a/k/a Jane

     

  • Hybridspirits
    Hybridspirits Member Posts: 209
    cheerful said:

    Hi Donna:

     

      The CA 125 is a blood test - any results below the number 35 is considered Normal.  Your number 10.8 is very good.

     

    Cheerful

    a/k/a Jane

     

    CA-125

    I agree that sounds like a good number.  What was shared with me is that for some this is a good cancer marker for others not.  For example when they were trying to figure out my cancer situation last November they did a CA-125 and it was like 5.  It has stayed there other than one time after chemo.  they concluded that since it was normal when I was diagnosed with Cancer they really can't rely on it for me like they might with others.  Good to have this conversation with your oncologist to see how he views this marker for you

     

  • Ann55
    Ann55 Member Posts: 48
    My understanding also is that

    My understanding also is that CA-125 is not reliable for everyone.I am UPSC stage 3C and even prior to surgery my CA-125 has always been normal. Some of us just have to rely on pathology and scans.

  • frodolass
    frodolass Member Posts: 32
    CA-125

    Yep, I had read that. I don't know if they took a level before my surgery or not, but it would have been interesting to be able to compare. At any rate, I'm glad it's low. Thanks!

  • sunflash
    sunflash Member Posts: 197
    It's not a reliable indicator

    It's not a reliable indicator for me either. It was never taken before surgery since cancer wasn't expected, and after surgery it was 5.

    I also wish it had been taken before surgery just for comparison sake.

  • ConnieSW
    ConnieSW Member Posts: 1,604 Member
    sunflash said:

    It's not a reliable indicator

    It's not a reliable indicator for me either. It was never taken before surgery since cancer wasn't expected, and after surgery it was 5.

    I also wish it had been taken before surgery just for comparison sake.

    Ca 125

    Are there anytheories  why it's an indicator for some and not others?  Mine was 8 before surgery but my oncologist still has them drawn.  Guess that means it could become useful for some reason.

  • Hybridspirits
    Hybridspirits Member Posts: 209
    ConnieSW said:

    Ca 125

    Are there anytheories  why it's an indicator for some and not others?  Mine was 8 before surgery but my oncologist still has them drawn.  Guess that means it could become useful for some reason.

    my read on this is no one

    my read on this is no one really knows the answer. If they didn't do it and it could have been useful someone would hold them to it.  So since it is protocol everyone gets the test.  Being a marker it just gives information to allow you to reserach further. Hopefully there are other types of markers in the mix such as cat scans,  MRI's,  pap smears etc... 

  • frodolass
    frodolass Member Posts: 32
    Port insertion

    Thank you guys for your comments and for the whole forum in general. I have found a wealth of information and some very kind folks.

    I'm having my port inserted tomorrow. Can anyone tell me what to expect? Will I be put to sleep for the procedure? Will it be under my skin? Will stuff be "hanging" out, lol?

    Thanks!

    Donna

     

  • Kaleena
    Kaleena Member Posts: 2,064 Member
    frodolass said:

    Port insertion

    Thank you guys for your comments and for the whole forum in general. I have found a wealth of information and some very kind folks.

    I'm having my port inserted tomorrow. Can anyone tell me what to expect? Will I be put to sleep for the procedure? Will it be under my skin? Will stuff be "hanging" out, lol?

    Thanks!

    Donna

     

    Port

    Hi Donna:

    They will place a lot of covers around your head and chest.  WhenI got mine way back in, I was up for part of it and they put me out.  But I heard that they don't do that anymore.  When I got mine out, I was totally awake.   It will be placed under your skin.   Mine ended up down in my boob so it really didn't show much.  It can be tender though if you bump it.  

    When they access it, it depends on who your nurse is.   Just like getting stick when giving blood, etc.    Sometimes I don't even feel it.   The first time they access my port, I did get a brief feeling of dizzyness but that was all.

    Let us know how it goes!   You will do fine!

    Kathy

  • ConnieSW
    ConnieSW Member Posts: 1,604 Member
    Kaleena said:

    Port

    Hi Donna:

    They will place a lot of covers around your head and chest.  WhenI got mine way back in, I was up for part of it and they put me out.  But I heard that they don't do that anymore.  When I got mine out, I was totally awake.   It will be placed under your skin.   Mine ended up down in my boob so it really didn't show much.  It can be tender though if you bump it.  

    When they access it, it depends on who your nurse is.   Just like getting stick when giving blood, etc.    Sometimes I don't even feel it.   The first time they access my port, I did get a brief feeling of dizzyness but that was all.

    Let us know how it goes!   You will do fine!

    Kathy

    Port

    I had light sedation so wasn't aware of anything when they inserted it.  The only discomfort afterwards was from the weight of my breast tugging on the incision.  The nurse helped me into my bra immediately afterwards and that helped a lot.  I also propped it by placing  my lower arm across my chest to help support my breast.  I seem to recall that only lasted a couple days or so.  I was also careful around my grandchildren afterwards so itwouldn't get bumped.  I did get an infection in the incision afterwards despite my being a nurse and being very careful to keep it clean.  I reported it immediately and was put on an antibiotic.  My port was wonderful and made everything so much easier.  Just be aware of complications to watch for, as you should with anything else in your treatment

  • frodolass
    frodolass Member Posts: 32
    Got the port in today

    Hi guys! Thanks so much for the helpful information. It helped a lot!

     

    They didn't put me to sleep, but I got sedation through an IV. They hit me twice, but it didn't really make me unaware of what was going on. It did relax me a bit because my blood pressure went down...it had been high because of anxiety earlier. It's really sore this evening. Can't really turn my head without it pulling and hurting, but I'm sure it will pass quickly.

     

    I begin chemo on Monday. It will be once a week for six weeks. Radiation begins on Wednesday and it will be every day for 5-6 weeks.

     

    Insurance refused to cover the PET scan the chemo doctor (not sure what his offical title is) ordered because it is considered "experimental." Argh. My insurance company is driving me nuts!

     

    Thanks again for the help, support, and information.

  • Ro10
    Ro10 Member Posts: 1,561
    frodolass said:

    Got the port in today

    Hi guys! Thanks so much for the helpful information. It helped a lot!

     

    They didn't put me to sleep, but I got sedation through an IV. They hit me twice, but it didn't really make me unaware of what was going on. It did relax me a bit because my blood pressure went down...it had been high because of anxiety earlier. It's really sore this evening. Can't really turn my head without it pulling and hurting, but I'm sure it will pass quickly.

     

    I begin chemo on Monday. It will be once a week for six weeks. Radiation begins on Wednesday and it will be every day for 5-6 weeks.

     

    Insurance refused to cover the PET scan the chemo doctor (not sure what his offical title is) ordered because it is considered "experimental." Argh. My insurance company is driving me nuts!

     

    Thanks again for the help, support, and information.

    Donna good luck on Monday

    Glad to hear you got your port.  Hope the soreness goes away soon.  the port will make chemo and blood draws so much easier.  I hope you tolerate the chemo well.  I know my first chemo was no nearly as bad as I had anticipated.  Make sure you drink plenty of fluids and do what you can to keep from getting constipated.  Rest when you need to, and accept help from others when offered.   Hope you have a good weekend.  In peace and caring.

  • Kaleena
    Kaleena Member Posts: 2,064 Member
    frodolass said:

    Got the port in today

    Hi guys! Thanks so much for the helpful information. It helped a lot!

     

    They didn't put me to sleep, but I got sedation through an IV. They hit me twice, but it didn't really make me unaware of what was going on. It did relax me a bit because my blood pressure went down...it had been high because of anxiety earlier. It's really sore this evening. Can't really turn my head without it pulling and hurting, but I'm sure it will pass quickly.

     

    I begin chemo on Monday. It will be once a week for six weeks. Radiation begins on Wednesday and it will be every day for 5-6 weeks.

     

    Insurance refused to cover the PET scan the chemo doctor (not sure what his offical title is) ordered because it is considered "experimental." Argh. My insurance company is driving me nuts!

     

    Thanks again for the help, support, and information.

    Thinking of you!

    Hi Donna:

    Hoping your first chemo went well.   You may find that you have a lot of energy today especially if they gave you steroids beforehand either the night before or right before infusion.    Just be aware that either tomorrow or the next day you may feel a little crummy or totally exhausted.   Of course, since you are getting chemo once a week, it may effect you differently.  They are always trying ways to make it more tolerable.

    As with the insurance company, I was refused a PET scan ordered by my Gyn/Onc because they said it wasn't "medically necessary".   Can you believe that?    aah, let's see.  I have cancer.  Isn't that medically necessary on its own?   I argued long and hard and still lostEmbarassed.   It is frustrating.  I hope you have better results with your company!

    Again, thinking of you!

    Kathy

  • cheerful
    cheerful Member Posts: 261 Member
    frodolass said:

    Got the port in today

    Hi guys! Thanks so much for the helpful information. It helped a lot!

     

    They didn't put me to sleep, but I got sedation through an IV. They hit me twice, but it didn't really make me unaware of what was going on. It did relax me a bit because my blood pressure went down...it had been high because of anxiety earlier. It's really sore this evening. Can't really turn my head without it pulling and hurting, but I'm sure it will pass quickly.

     

    I begin chemo on Monday. It will be once a week for six weeks. Radiation begins on Wednesday and it will be every day for 5-6 weeks.

     

    Insurance refused to cover the PET scan the chemo doctor (not sure what his offical title is) ordered because it is considered "experimental." Argh. My insurance company is driving me nuts!

     

    Thanks again for the help, support, and information.

    Hi Donna:

     

      I hope you are making out okay today with your first chemo treatment.  Just be sure to get plenty of rest after today and also tomorrow and drink plenty of fluids.  Your treatments are every week whereas mine were every 3 weeks, but you will be finished with them a lot quicker as well as with the radiation.  So good luck with everything. 

      Also, the medication that the chemo nurses give you before you start your chemo will help you as well.

      Anyway, all the best going through your treatments.

    Cheerful

    a/k/a Jane

      

     

  • frodolass
    frodolass Member Posts: 32
    First chemo treatment

    Well, I completed my first chemo treatment today. It was a bit of a disppointment.

    They took me back to do vitals and gave me three "tubes" for blood. I was to take the tubes to the chemo room and wait to have my blood drawn. I got directions to the chemo room. I walked in and was surprised to see this relatively small room filled with a couple dozen people sitting in chairs hooked up to IVs. There is no privacy. You're not allowed to bring a family member with you because of "flu" concerns. My opinion is they don't allow it because there is literally no room for anyone else. The chairs are jammed together. I now know everything there is to know about my neighbors, and they about me. They kept me waiting two hours to just draw my blood. When we finally got started on the four hour treatment, I had to wait long periods waiting for the nurse to come change the drugs to the next one.

    Maybe this is the way it is everywhere? I'm unhappy with the situation, but really have no choice in the matter, so I'll have to grin and bear it. I'm sure that the treatment itself is effective, it's just not very comfortable or supportive.

    Anyway, the insurance finally agreed to pay most of the PET scan (yay!), so I go for that tomorrow. Hopefully, I won't get sick during it, lol.

    Thank you again for your concern and support. It means a lot to me and I appreciate your knowledge.

    Donna

  • Ro10
    Ro10 Member Posts: 1,561
    frodolass said:

    First chemo treatment

    Well, I completed my first chemo treatment today. It was a bit of a disppointment.

    They took me back to do vitals and gave me three "tubes" for blood. I was to take the tubes to the chemo room and wait to have my blood drawn. I got directions to the chemo room. I walked in and was surprised to see this relatively small room filled with a couple dozen people sitting in chairs hooked up to IVs. There is no privacy. You're not allowed to bring a family member with you because of "flu" concerns. My opinion is they don't allow it because there is literally no room for anyone else. The chairs are jammed together. I now know everything there is to know about my neighbors, and they about me. They kept me waiting two hours to just draw my blood. When we finally got started on the four hour treatment, I had to wait long periods waiting for the nurse to come change the drugs to the next one.

    Maybe this is the way it is everywhere? I'm unhappy with the situation, but really have no choice in the matter, so I'll have to grin and bear it. I'm sure that the treatment itself is effective, it's just not very comfortable or supportive.

    Anyway, the insurance finally agreed to pay most of the PET scan (yay!), so I go for that tomorrow. Hopefully, I won't get sick during it, lol.

    Thank you again for your concern and support. It means a lot to me and I appreciate your knowledge.

    Donna

    Donna sorry your first day was a disappointment

    There is always a waiting period for them to mix the chemo.  They have to make sure your blood count is okay.  They do not mix the chemo until you are at the chemo area.  Where I go in Florida they do vitals and then you wait in the waiting room until the chemo is mixed.  In Illnois Iwait in the chemo chair.   I am sorry you can not have anyone with you while you get chemo.  It sure passes the time.  My chemo days are 2 days in a row and maybe 8 -100 hours long.  I have to have both chemo drugs slowly.  The premeds take over a hour.  My husband has always gone with me.  I appreciate all his support.

    is there another cancer center close that you could go to.  Although if you are getting radiation at the same time, it would be inconvenient for you.  

    Did your port work good for you?  I hope you PET scan goes well tomorrow.  Remember to keep drinking fluids.  In peace and caring.

  • frodolass
    frodolass Member Posts: 32
    Ro10 said:

    Donna sorry your first day was a disappointment

    There is always a waiting period for them to mix the chemo.  They have to make sure your blood count is okay.  They do not mix the chemo until you are at the chemo area.  Where I go in Florida they do vitals and then you wait in the waiting room until the chemo is mixed.  In Illnois Iwait in the chemo chair.   I am sorry you can not have anyone with you while you get chemo.  It sure passes the time.  My chemo days are 2 days in a row and maybe 8 -100 hours long.  I have to have both chemo drugs slowly.  The premeds take over a hour.  My husband has always gone with me.  I appreciate all his support.

    is there another cancer center close that you could go to.  Although if you are getting radiation at the same time, it would be inconvenient for you.  

    Did your port work good for you?  I hope you PET scan goes well tomorrow.  Remember to keep drinking fluids.  In peace and caring.

    Sorry to be a whiny baby..

    Thanks so much for your post! I'm sorry to be so whiny. I don't know what's wrong with me. Usually I can just go with the flow. After I thought about it, I really had an enjoyable (or not miserable anyway, lol) day. It wasn't as bad as my first knee-jerk reaction. I'm going to go with a positive attitude next week. I also bought a sleep mask and ear plugs Wink

    The PET scan went very well...except for the coughing fit I had in the middle. They said it was okay, though. I should have the results tomorrow at my first radiation treatment appointment. Hoping for a clear scan. One positive thing is that insurance covered the scan 100%! My radiologist oncologist is a tough cookie and she went after the insurance company to get them to agree to pay for it.

    I'm not having any negative reactions to the chemo at this point except elevated blood glucose levels. I guess the nausea will show up in the next couple of days, if I have any?

    Thanks again. You guys are such a comfort.

    Donna

     

     

     

  • Ro10
    Ro10 Member Posts: 1,561
    frodolass said:

    Sorry to be a whiny baby..

    Thanks so much for your post! I'm sorry to be so whiny. I don't know what's wrong with me. Usually I can just go with the flow. After I thought about it, I really had an enjoyable (or not miserable anyway, lol) day. It wasn't as bad as my first knee-jerk reaction. I'm going to go with a positive attitude next week. I also bought a sleep mask and ear plugs Wink

    The PET scan went very well...except for the coughing fit I had in the middle. They said it was okay, though. I should have the results tomorrow at my first radiation treatment appointment. Hoping for a clear scan. One positive thing is that insurance covered the scan 100%! My radiologist oncologist is a tough cookie and she went after the insurance company to get them to agree to pay for it.

    I'm not having any negative reactions to the chemo at this point except elevated blood glucose levels. I guess the nausea will show up in the next couple of days, if I have any?

    Thanks again. You guys are such a comfort.

    Donna

     

     

     

    Donna , nobody thinks you are. A "whiny baby"

    Feel free to express any of your feelings.  The steroids can make you more emotional.  Maybe you won't get nausea since you are getting weekly chemo which is a smaller dose.  I hope the nausea stays away for you.  

    is tomorrow your first radiation treatment, or your appointment to get fitted for a " mold".  One of the recommendations I was given was to have a full bladder before each radiation treatment.  This keeps the colon away from the area getting radiation.  By doing this I did not have the colon problems.....diarrhea that others have experienced.

    glad the PET scan went well.  Hope you get good results tomorrow.  Did the soreness go away from your port?

    The steroids will cause an elevation in your blood sugar.  Plus you may be getting some of yout drugs mixed in glucose.

    i always took my I-pod and listened to music while I was getting my chemo.  Here's hoping that tomorrow goes well.  In peace and caring.