New here, 4 1/2 years from diagnosis

Hi all!

I'm new to discussion about this. I am 4 1/2 years from diagnosis, and am so angry at this cancer! I'm having long-term effects of treatment (neuropathy in my feet, intestinal problems, tendon weakening, anemia, kidney issues, and let's not even get into my sex life), and yes I'm glad I'm here but...DANG! (Or a stronger word lol).

I was 42 at diagnosis, had a complete abdominal hysterectomy, chemo with taxol and carboplatin, 6 doses over 20 weeks or so, 25 radiation treatments with cisplatin and 3 internal radiation treatments. Now I know what a physicist does! lol

And now that I'm reaching the end of seeing my doctors, all I can think of is a reoccurance somewhere in my body. Every little pain makes me worry.

I'm looking for some place to talk about this...

Thanks

Comments

  • Ro10
    Ro10 Member Posts: 1,561 Member
    Ixmii, you have come to the right place
    Fell free to vent away. Most of us have been through what you have been through, so we understand where you are coming from. 4 1/2 years since diagnosis sounds great. Sorry to hear you have so many side effects though. You say you are at the end of seeing your doctors. Why is that? Won't you still have check ups. Good luck with enjoying each day you have without a recurrence. In peace and caring.
  • jazzy1
    jazzy1 Member Posts: 1,379
    Welcome!
    Congrats on 4-1/2 years. I'm 3 yrs from completion of treatments. I've got a few side affects such as fast bowels and lower back issues with recent diagnosis of bulging disk and sciatica pain. Surely can relate.

    What puts my situation in perspective, it's not cancer!!! I'm so grateful to be alive and not having to deal with chemo & radiation, so looking on the other side with back issues, I'm doing great, in my mind!!!

    No matter how bad we might feel we have it, someone else has it a lot worse.

    Cancer is not a sentence, it's a word!!

    Hugs,
    Jan
  • DoonyL7
    DoonyL7 Member Posts: 33
    Hi There
    I am new to this website and am trying to connect with those who have UPSC. But I also have neuropathy in feet and fingers. I had some due to diabetes already but not like this espacially in fingers. I have just finished first round of the same chemo drugs. Of course I am hairless at the moment. I will start radiation next week. A grueling 7 weeks or more of external and 3 of internal. Sounds like a fun time.
    I also had intestinal problems due to IBS which of course are worse during chemo. I have gotten very fleet of foot getting to the potty :). Hoping this will subside. The anmeia is fun too though mine isn't to bad. Just enough to make climbing stairs interesting. I am taking iron tabs to help with that problem.
    I know what you mean about thinking you could have a recurrance. Its my main worry. I even asked how they keep watch over you of my docs and I'm not even done yet. I mean really when you know your cancer is only 40-50 % survival rates with a recurrance within 2 years yowzer thats scary.
    Anyway Your doing wonderful in my book. You hang in there!!!!
    If anyone out there reads this and has UPSC sure could used some encouragement.
    Thanks
  • cleo
    cleo Member Posts: 144
    DoonyL7 said:

    Hi There
    I am new to this website and am trying to connect with those who have UPSC. But I also have neuropathy in feet and fingers. I had some due to diabetes already but not like this espacially in fingers. I have just finished first round of the same chemo drugs. Of course I am hairless at the moment. I will start radiation next week. A grueling 7 weeks or more of external and 3 of internal. Sounds like a fun time.
    I also had intestinal problems due to IBS which of course are worse during chemo. I have gotten very fleet of foot getting to the potty :). Hoping this will subside. The anmeia is fun too though mine isn't to bad. Just enough to make climbing stairs interesting. I am taking iron tabs to help with that problem.
    I know what you mean about thinking you could have a recurrance. Its my main worry. I even asked how they keep watch over you of my docs and I'm not even done yet. I mean really when you know your cancer is only 40-50 % survival rates with a recurrance within 2 years yowzer thats scary.
    Anyway Your doing wonderful in my book. You hang in there!!!!
    If anyone out there reads this and has UPSC sure could used some encouragement.
    Thanks

    I'm with Jan!!
    I have just received my 5 year NED MMMT. I had to be away from home for 6 weeks for radiotherapy and in that time met young people who were not going to be here to see their young children grow up, or have the chance to have a family. I'm with Jan...that put everything into perspective for me. I also empathise with the issues but grateful for every day.
  • Ro10
    Ro10 Member Posts: 1,561 Member
    DoonyL7 said:

    Hi There
    I am new to this website and am trying to connect with those who have UPSC. But I also have neuropathy in feet and fingers. I had some due to diabetes already but not like this espacially in fingers. I have just finished first round of the same chemo drugs. Of course I am hairless at the moment. I will start radiation next week. A grueling 7 weeks or more of external and 3 of internal. Sounds like a fun time.
    I also had intestinal problems due to IBS which of course are worse during chemo. I have gotten very fleet of foot getting to the potty :). Hoping this will subside. The anmeia is fun too though mine isn't to bad. Just enough to make climbing stairs interesting. I am taking iron tabs to help with that problem.
    I know what you mean about thinking you could have a recurrance. Its my main worry. I even asked how they keep watch over you of my docs and I'm not even done yet. I mean really when you know your cancer is only 40-50 % survival rates with a recurrance within 2 years yowzer thats scary.
    Anyway Your doing wonderful in my book. You hang in there!!!!
    If anyone out there reads this and has UPSC sure could used some encouragement.
    Thanks

    DoonyL7 welcome to this site
    I am sorry you have to join this journey with us. We will try to support and encourage you along your journey.

    I too have UPSC stage 3-C. I initially had the sandwich treatment in 09. I have since had two recurrences in lymph nodes and had 6-7 rounds of chemo each time. I have been off chemo for four months. My CA-125 is rising already, so I know another round of chemo is on the way. I am hoping for two more months treatment free so I can go back on the taxol/Cisplatin. Luckily I have minimal side effects from the three rounds of chemo.

    In the meantime I am trying to enjoy each day. I spend time with positive people and thank God for all the blessings he has given me.

    Continue to take it one day at a time. Treat yourself well, and rest when you need it. Eat well and drink plenty of fluids. In peace and caring.
  • LizGrrr
    LizGrrr Member Posts: 127 Member
    Fear of recurrence
    Cant imagine if it ever goes away.

    Liz in Dallas
  • DoonyL7
    DoonyL7 Member Posts: 33
    Ro10 said:

    DoonyL7 welcome to this site
    I am sorry you have to join this journey with us. We will try to support and encourage you along your journey.

    I too have UPSC stage 3-C. I initially had the sandwich treatment in 09. I have since had two recurrences in lymph nodes and had 6-7 rounds of chemo each time. I have been off chemo for four months. My CA-125 is rising already, so I know another round of chemo is on the way. I am hoping for two more months treatment free so I can go back on the taxol/Cisplatin. Luckily I have minimal side effects from the three rounds of chemo.

    In the meantime I am trying to enjoy each day. I spend time with positive people and thank God for all the blessings he has given me.

    Continue to take it one day at a time. Treat yourself well, and rest when you need it. Eat well and drink plenty of fluids. In peace and caring.

    Hello
    Thank you Ro. I am still waiting for radiation schedule. I am trying to not dwell on the negative and get past my anger. I mean really being anygry is so energy draining isn't it. Anyway trying to eat better and drinking lots of water. Doc says my kidneys are exceptional lol. I told him what the heck I give them a good work out with my fluild consumption.
    You take care.....lorna
  • clampett12
    clampett12 Member Posts: 6
    tamoxifen/megestrol vs arimadex / faslodex
    Hi All, I've been diagnosed 2010 with Endometrial Cancer that has spread to my lung I had a total hysterectomy first had taxol/carpol for 8 treatments then was in Doxcil for 8 treatments and I just finished my last treatment wth taxotere and now my oncologist wants to put me on tamifen and megestrol . I'm afraid of the tamoxifen because of my age and weight (I've gain since I've been on chemo) Has anyone heard of arimadex w/ faslodex? Instead of the tamoxifen w/ megestrol? in post menopausal women. thanks again