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

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  • Soup52
    Soup52 Member Posts: 908 Member
    #82
    Interesting about steroids.

    Interesting about steroids. My question- did others continue getting steroids after treatment? I only had them the night before chemo and day of chemo.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #83
    Soup52 said:

    Interesting about steroids.

    Interesting about steroids. My question- did others continue getting steroids after treatment? I only had them the night before chemo and day of chemo.

    Steroids

    I find it interesting as well how different centers use steroids. I was never given anything in pill form. My steroids were given through IV the day of my treatments.

  • Kvdyson
    Kvdyson Member Posts: 789
    #84
    Soup52 said:

    Interesting about steroids.

    Interesting about steroids. My question- did others continue getting steroids after treatment? I only had them the night before chemo and day of chemo.

    My experience was the same,

    My experience was the same, Soup. The night before and day-of only.

  • Kvdyson
    Kvdyson Member Posts: 789
    #85
    Donna Faye said:

    The new look!

    Could not take the hair coming out in clumps so shaved the head and now in cowgirl mode! Feeling much calmer this time around as once you have a round, you sort of know what to expect.  Will be there at 9 a.m. so better than the 2 p.m. app't. Won't close the center down. Hoping for an easier let down as we are tapering steriods off. Did any of you get advice on tapering steriods?

    Hugs to all. Cowgirl Faye

    Love the new look, Faye! I

    Love the new look, Faye! I hope this second round goes smoothly for you. I only took steroids the night before and the day-of treatment so I don't have any advice on the tapering. I'm sure others will join-in with their experiences. Kim

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #86
    Steriods

    i only had them the day of chemo and then through my IV.  Once I was sent home with a prescription for dexamthazone, but I never had to use it.

    Hugs and prayers, Lou Ann

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #87
    Back from the Snake Dance Tired Out

    I am using D.H. Lawrence's ss title as that is how I feel! Left home at 8:30 - got home at 3:30 - 5 minutes from center - long day. However, all went well - no problem finding a vein but here is where the steriods come in. I had a mild allergic reaction during first 10 min. of Taxol during 1st chemo.  So this time I had prodnisone 20 mg. last night and before leaving home this morning; get 20 mg in drip, then a saline flush, then the Taxol(3 hrs), then the second chemo drug( 30 min) then take 2 /4 mg dexamethasome 2 times a day for 2 days. That was the order on first. This time will take for 4 days but will reduce daily the amount until weaned off.  

    Interesting that none of you had this protocol.  Feeling good now but very tired. Will be watching how this tapering works and if I have better let down.

    Cowgirl Up! Faye

  • sshhaarrii
    sshhaarrii Member Posts: 38 Member
    #88
    I had the dense dose chemo, 6

    I had the dense dose chemo, 6 rounds/18 weeks. Carbo/taxol on week one, taxol on weeks two and three. Steroids, Benadryl, Prilocec (and other nausea meds) at each infusion. On the Carbo/taxol weeks I took steroids (dex) on days two and three. The steroids kept me up all night, so I slept a lot the following days

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #89
    interesting on steriods

    I am in a research study so will ask if the continued steriods is something new althought sshhaarrii's routine is similiar to mine. I slept well last night ( chemo day) and so far today am not flying high so hope will continue. All good so far and glad I carried on!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,368 Member
    #90
    I will say, you all made me

    I will say, you all made me go to grab some of the info I was given (and saved) from almost five years ago.  I was given a calendar with what to take every day starting with the steroids the night before (20 mg), the day of (20 mg), the following day (8 mg in the am and 8 mg at noon), the day after that (8 mg in the am and 8 mg at noon), the day after that (4 mg in the am and 4 mg at noon) and FINALLY the next day (4 mg in the am and 4 mg at noon) - so I had total of 6 days starting at 20 mg and stepping down.  (Each pill was 4 mg)   I knew you had to step steroids down so I stuck to the schedule.  Funny that they would prescribe so much ativan I could never use it but they would only write scrips for the steroids in enough for each treatment.  

    Yikes, after I posted I wanted to add:  Linda D - I can't tell if you are working with a gynecologic oncologist or not.  If not - go find one and get a second opinion from them.  

    I also was told to take Zofran - anti-nausea meds - during this time on certain days and had extra if I needed it.  

    Miss Donna - love the new look!  

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #91
    No time for cancer

    Thank you for this post! That is the schedule they gave me THIS TIME after I complained about the sudden stop. I am doing so much better this second time as I know what to expect and how to react. It seems that one can EVER be too proactive with their doctors.  That is why this board is So IMPORTANT as it gives strength to those who seek to know more.

    Linda, let us hear from you. 

    Thanks to all!!!

    Cowgirl Faye

     

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited April 2017 #92
    Love that hat, where are you

    Love that hat, where are you from.  That is the common head gear where I am from.  I am glad the second treatment is going better for you .  You are strong and you will make it through.

    Hugs and prayers, Lou Ann

  • SandyD
    SandyD Member Posts: 130
    edited April 2017 #93
    Donna Faye said:

    Back from the Snake Dance Tired Out

    I am using D.H. Lawrence's ss title as that is how I feel! Left home at 8:30 - got home at 3:30 - 5 minutes from center - long day. However, all went well - no problem finding a vein but here is where the steriods come in. I had a mild allergic reaction during first 10 min. of Taxol during 1st chemo.  So this time I had prodnisone 20 mg. last night and before leaving home this morning; get 20 mg in drip, then a saline flush, then the Taxol(3 hrs), then the second chemo drug( 30 min) then take 2 /4 mg dexamethasome 2 times a day for 2 days. That was the order on first. This time will take for 4 days but will reduce daily the amount until weaned off.  

    Interesting that none of you had this protocol.  Feeling good now but very tired. Will be watching how this tapering works and if I have better let down.

    Cowgirl Up! Faye

    Steroids for 2 days

    I did have to take the steroids for 2X day for 2 days after chemo. I also had a severe allergic reaction to the taxol the first time and received IV steroids along with the taxol (as well carboplatin) but can't remember the order of steroids and chemo drugs. Also was given Benadryl via IV.  It was sometime after the 2 days of steroids ended that I started having more side effects such as pain in feet and legs, some restless leg symptoms, extreme tiredness, etc.

    Sandy 

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #94
    Lou Ann

    I was born and reared in south Georgia but was a cowgirl at heart. Spent summers in NC, Wy, or Montana riding horses and wearing boots and hats! At 65 bought a farm in NC and rescued horses and was nanny to 2 grandsons who have grown up riding and loving cowboy hats too! Sold the farm this summer after realizing I was getting a tad old for farming 15 acres alone. Miss it but still riding - or will be as soon as I finish this chemo.

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #95
    Donna Faye said:

    Lou Ann

    I was born and reared in south Georgia but was a cowgirl at heart. Spent summers in NC, Wy, or Montana riding horses and wearing boots and hats! At 65 bought a farm in NC and rescued horses and was nanny to 2 grandsons who have grown up riding and loving cowboy hats too! Sold the farm this summer after realizing I was getting a tad old for farming 15 acres alone. Miss it but still riding - or will be as soon as I finish this chemo.

    Montana

    i knew there was some Montana in there someplace.  Where in Montana did you go?  I live in Whitehall, MT,  but grew up on a farm in Missouri.

    Hugs and prayers, Lou Ann

  • derMaus
    derMaus Member Posts: 558 Member
    #96
    Steriods Are Evil

    Six rounds of chemo led me to the conclusion that seriods are evil, at least for me. I only had them intravenously during treatment; my first session was at 21 mg and I was high for three days afterwards. I made them dial it down...and down...and down for each subsequent treatment. My last chemo was on April 10th and my dosage was 8 mg. My symptoms were typical: restlessness, moon face, flushing, and a ravenous hunger, specifically for anything carb-based. I'm still waiting for that crap to flush out of my system! Also I would like to dump the 10+ pounds I gained. I understand that steroids are a necessary evil, but in my case I wasn't able to strike an effective balance between benefits and side effects. I'm glad *that* part of my journey is over!!

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #97
    derMaus

    I would agree with you that unless steriod directions are given, they can really mess one up. I believe it is to avoid an allergic reaction to Taxol, but my problem was they did not taper the dex off and I crashed on day5 of the first chemo- pains, low temps, no sleep, a mess. This time we had a schedule for coming off and today is day 5 and I am doing OK. Weaning the dex down as all the directions tell one to do when one is TOLD. I have not had any of the side effects like on the 1st round and am thankful my kids and I demanded to know more this go round. I was ready to quit after round 1 but now will carry on and finish.

  • Linda D
    Linda D Member Posts: 2
    edited May 2017 #98
    Observation v Chemo

    I saw an oncologist at a Cancer Center in Kennebunk on Friday.  She will set up a consultation at Dana Farber in the next two weeks.  The cancerous polyp did not encroach into the uterine muscle - myeometrium.  But is was attached - or maybe just sitting on the inner uterine wall.  The Dana Farber pathologist will look over the slides from the specimens removed during surgery.

    I think that probably I will end up having chemo - just to be sure.  This is all new for me - I don't even have the vocabulary to talk about it.

    Are there other IAs who had no myeometrium involvement - and still had chemo?

    Are there immunotherapy treatments that are appropriate for this type of cancer?

    I need Cliff's Notes!

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #99
    Linda

    Linda, glad to hear of the new plan. I did not have any myeometrium involvement - in fact had very small place  on uterine wall but because of the aggressive nature of UPSC, all my doctors urged me to do chemo and radiation. At 77, I was not too keen on it, but decided to go for it.  Am now almost through and guess I am glad.  Each of us had to try and get as much nformation as we could and then decide. I have found this iste very helpful.

    Good luck!

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    edited May 2017 #100
    3 o'clock in the morning

    Ladies, completed my final chemo today. Now 5 radiation treatments in June and I will be done. Then I see how things go for the next few years. The steriods keep me awake, but I have earphones so am not disturbing my son's family (with the movies I watch) where I am enjoying their wonderful hospitality for a week.

    Guess I will be checking in every now and then to see how all of you are doing. I wish the best for all of us and know you have made my journey easier. Thank you all.

    Come July I will resume riding horses - it will just be a slow walk around the ring for the first few weeks but hope to be up to a gallop by September. Hugs!!!!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #101
    Yeah! Congrats on competing

    Yeah! Congrats on competing chemo. I still remember how good that felt. :-)

    Brachy therapy was the easiest part of this journey for me. Very few side effects. I did get some fatigue and my white blood counts went down a bit. 16 months later and I am feeling good.  I hope it goes as well for you.

    Enjoy your family and take care Donna Faye.

    Love and Hugs,

    Cindi

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