Any UPSC 1a who did observation rather than chemo/radiation

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  • Soup52
    Soup52 Member Posts: 908 Member
    #42
    I've had my port for a little

    I've had my port for a little over a year and have had no problem with it. I barely notice that it is there. I plan to keep it in for as long as the doctor says I should. Actually reoccurrence is always on my mind and I would rather have it in than taken out and have to have it put back in later.

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    edited April 2017 #43
    Different types of chemo

    Donna - I too had chemo for breast cancer.  I did not have to have it for Stage 1, grade 1 endo cancer, but in my little pea brain I thought chemo was chemo and I would get more bang for my bucks by having what I had for breast cancer even tho the endo cancer didn't require any.  Then they educated me that the chemmo recommended for my particular breast cancer was not the same nor as effective as what I might have had for endo cancer.  Different drugs in my case.   I also had only 4 sessions of chemo for breast cancer and my prognosis was always good and it was unlikely that I would ever need any more and my veins did ok.  You have UPSC and it is more aggressive and you will likely have 6 sessions and if you're having Taxol, that's usually administered weekly.  That's a lot of pokes, PICC line or no PICC line.  You should discuss this (if you can) with your oncologists.  There are advantages and disadvantages of being in a local oncology office vs. academic medical center.  Unfortunately, you're experiencing some of the disadvantages (they're big and sometimes the right hand doesn't know what the left is doing!).  The advantage tho is with your "special" endometrial cancer, they have the most experience in dealing with it.  From what I understand, having a port is pretty typical for just about everyone with UPSC.  Do your research and make them explain everything.  They're a teaching hospital, and part of their job is to educate their patients!  Then you can make an informed decision.  Hope all of these issues get resolved quickly.  Hey, tomorrow is Monday - call them!

    Suzanne

    Suzanne 

  • sshhaarrii
    sshhaarrii Member Posts: 38 Member
    #44
    I had a PICC line for the

    I had a PICC line for the last 6 weeks of chemo. I did not have to flush it myself, it was flushed weekly prior to my infusions. I originally had a port, but the inscesion would not heal. The port had to be removed when the port was exposed. I had a few issues getting through chemo. Glad that's over. 

    I'm also a UPSC, 1A. 6 rounds of carbo/taxol and 3 sessions of brachatherapy for me. I have 2 more sessions of brachatherapy to go. My Dr never said anything about observation. The treatment was not easy, but to wait for this cancer to return would be too much for me.

    I pray and wish you smooth journey.

  • sshhaarrii
    sshhaarrii Member Posts: 38 Member
    #45
    Oh, I forgot to say that I

    Oh, I forgot to say that I preferred the PICC line. It was a pain to shower, but other than that no issues and after chemo is done the PICC line is removed.

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #46
    Today is the start of something new...

    Headed to the hospital in 4 hours to begin chemo 1. Final decision was no port or PICC - going to use the veins and hope all goes as planned.

    Feeling strong and just ready to get it behind me, as I KNOW you ALL understand. Thank you every one for writing to me as it has meant SO much. HUGS to all.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #47
    Good luck Donna! You will do

    Good luck Donna! You will do great.

    Love and Hugs,

    Cindi

  • janaes
    janaes Member Posts: 799 Member
    edited April 2017 #48
    Yea!!! you'll have one done

    Yea!!! you'll have one done today.  I remember telling myself that I have to start to get it done.  You sound like a fighter to me!!

    janae

  • Nellasing
    Nellasing Member Posts: 528 Member
    #49
    You GO Donna!

    Thinking of you today as you are getting #1 checked off the list!  It feels so good to get going and moving in a forward direction instead of sitting and waiting.  Time will fly and soon we'll be congratulating you as you RING THE BELL  (((HUGS)))

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    edited April 2017 #50
    Done it

    So far, so good! Sorry pic is sideways, will try and get it upright( : Things went very well but I do think my being an advocate for myself helped.

    I got the best and oldest war horse nurse to insert the line in vein and she got it on second stick !!! Did have the allergic reaction to Taxol in first 10 minutes so it was stopped and I was loaded up on benadryl, rested 15 minutes then restarted at slower drip. 16 minutes later speeded the drip up and all well. Even took a nap.

    A shout out to our fantastic caregivers! My daughter was there the entire time and I do think her presence also made for great care.  I watched a movie on computer, read , snacked and then it was over. It was 6 hrs. but next one should run faster as they know how I react and can prepare ahead.

    Sincere thanks to each of you who helped me decide which road to travel...in this case it was the one all of you chose. Love ya to the moon and back !

  • Nellasing
    Nellasing Member Posts: 528 Member
    #51
    Donna

    quick reminder and maybe you just didn't mention it- be sure to be drinking water the whole time and even MORE after!!!  It helps so much and you do not want to experience the burning pee, bladder, or constipation!!!  Also, you probably wont be running much faster than that- I'd be really surprised it always took about 5 hours or more- they can't run that taxol slow enough as it is the one that causes the most problems for most people.  They always started me off with a bag of steroids etc. waited 20 min then began the taxol and by the end I had to have it run even slower and cut by 50%.  I don't think you are having as many if my brain is working correctly....?  (((HUGS)))

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #52
    Faye, congrats on being one

    Faye, congrats on being one-third of the way done already! You can do this!! Like Nellasing advised, stay hydrated! Also, eat lots of protein to help you body bounce back. I took Miralax to help keep my bowels regular during chemo but there are lots of other choices, too. Good luck to you and keep us posted on how you're doing! Kim 

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #53
    2 days post chemo

    I have had zero nausea but the steriods do wire me and sleep is not as forthcoming. I feel great which in a way is not good as I find it hard to rest and not do things like clean closets. I bet when I stop the nausea meds I'll feel like a wet noodle, My 77th bd was yesterday and I had 5 goodlooking men bring me dinner and 2 cakes! We had a blast. They were my son, son in laws and 2 grandsons. Calls from my Fl son and grandson, calls and cards from friends made for a super day. Each of us has experienced a life changing time and we are all making the best of it. Thank you all again for being open to sharing.

    Faye

  • Nellasing
    Nellasing Member Posts: 528 Member
    #54
    Happy Belated 77th Birthday Faye

    So glad you are feeling good- if wired.  So happy you had a wonderful time celebrating your birthday with your family- sounds like the best gift ever!  (((HUGS)))

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #55
    Donna Faye said:

    Done it

    So far, so good! Sorry pic is sideways, will try and get it upright( : Things went very well but I do think my being an advocate for myself helped.

    I got the best and oldest war horse nurse to insert the line in vein and she got it on second stick !!! Did have the allergic reaction to Taxol in first 10 minutes so it was stopped and I was loaded up on benadryl, rested 15 minutes then restarted at slower drip. 16 minutes later speeded the drip up and all well. Even took a nap.

    A shout out to our fantastic caregivers! My daughter was there the entire time and I do think her presence also made for great care.  I watched a movie on computer, read , snacked and then it was over. It was 6 hrs. but next one should run faster as they know how I react and can prepare ahead.

    Sincere thanks to each of you who helped me decide which road to travel...in this case it was the one all of you chose. Love ya to the moon and back !

    Donna, I had my friends who

    Donna, I had my friends who came keep notes on the treatment so we knew what worked and didn't work. I agree, having them there was wonderful.  I did not have a port and had to get stuck each time.  We only had problems one time getting a vein which wasn't all that fun.  As for the reaction to Taxol, again - being your own advocate, you will want to make sure you mention that right away for the next visit.  Did they not give you bendryl before the treatment started?  I will say the nurses (who are GREAT) were always good about telling me what they were giving me.  

  • SandyD
    SandyD Member Posts: 130
    edited April 2017 #56
    Donna Faye said:

    Done it

    So far, so good! Sorry pic is sideways, will try and get it upright( : Things went very well but I do think my being an advocate for myself helped.

    I got the best and oldest war horse nurse to insert the line in vein and she got it on second stick !!! Did have the allergic reaction to Taxol in first 10 minutes so it was stopped and I was loaded up on benadryl, rested 15 minutes then restarted at slower drip. 16 minutes later speeded the drip up and all well. Even took a nap.

    A shout out to our fantastic caregivers! My daughter was there the entire time and I do think her presence also made for great care.  I watched a movie on computer, read , snacked and then it was over. It was 6 hrs. but next one should run faster as they know how I react and can prepare ahead.

    Sincere thanks to each of you who helped me decide which road to travel...in this case it was the one all of you chose. Love ya to the moon and back !

    Having someone with you

    is absolutely recommended. I think you're right about this improving care and I also found that the family member or friend could note or remember things that I didn't due to all the benadryl I received due to my severe reaction to the taxol at the first treatment. Sounds like you've got it all together with this! 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited April 2017 #57
    Happy Birthday Donna Faye!

    Happy Birthday Donna Faye! They do seem to have more meaning these days! I just celebrated my 60th on 4/7. :-)

    Glad you are feeling good after chemo. Even if it is temporary.  I looked forward to those good days.

    Love and Hugs,

    Cindi

  • sshhaarrii
    sshhaarrii Member Posts: 38 Member
    #58
    Happy Birthday!!!  How

    Happy Birthday!!!  How wonderful for you to have the support from family and friends, so important. Hope you are having a good day today, too. 

  • Soup52
    Soup52 Member Posts: 908 Member
    edited April 2017 #59
    Happy Birthday! It sounds

    Happy Birthday! It sounds like you have had an awesome one with caring family!

  • Nellasing
    Nellasing Member Posts: 528 Member
    #60
    TeddyandBears_Mom said:

    Happy Birthday Donna Faye!

    Happy Birthday Donna Faye! They do seem to have more meaning these days! I just celebrated my 60th on 4/7. :-)

    Glad you are feeling good after chemo. Even if it is temporary.  I looked forward to those good days.

    Love and Hugs,

    Cindi

    Happy Belated 60th to you Cindi!

    Wow- some April babies what a wonderful reminder of new life and all the promises it brings.  Hope your day was extra special and that the year ahead holds BLESSINGS!  (((HUGS)))

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #61
    Nellasing said:

    Happy Belated 60th to you Cindi!

    Wow- some April babies what a wonderful reminder of new life and all the promises it brings.  Hope your day was extra special and that the year ahead holds BLESSINGS!  (((HUGS)))

    Thanks Nellasing. And I hope

    Thanks Nellasing. And I hope your year also brings loads of blessings! You have come a long way in a short time.

    Love and Hugs,

    Cindi

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