What should I expect next

Tushygirl
Tushygirl Member Posts: 28 Member

tomorrow I start my second round of chemo and 5 week of radiation.  My doctors keep telling me thing are going to get worse but when I ask them what side effects am I going to get, they say more of the same.  Well gee, that rally doesn't help me prepare.  

So can you help me understand what "worse" means and the time line?  I really do hate the unknown.

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Comments

  • swood9008
    swood9008 Member Posts: 116 Member
    My mom tolerated chemo pretty

    My mom tolerated chemo pretty good, some mouth sores and fatigue but that's about it. Radiation really crept up on her the last 2 weeks. 

  • mp327
    mp327 Member Posts: 4,440 Member
    edited March 2017 #3
    tushygirl

    If you have noticed any burning, it may get worse.  Pain with BM's and urination may worsen.  Your skin might deteriorate.  Blood counts can drop.  Appetite may decrease or completely disappear.  Diarrhea can increase, which means hydration must increase.  You may have mouth sores with the second round of chemo.  Fatigue can worsen.  Anything that was a side effect during the first round can happen with the second round.  Any side effects you now have can worsen because your immune system is further compromised.  Stay clear of anyone who is ill.  I hope this helps you understand.

    Martha

  • Tushygirl
    Tushygirl Member Posts: 28 Member
    Thanks all

    thanks.  I had horrible mouth sores and terrible headaches the first round of chemo.  I have already had some skin deteration with weeping sores.  I guess I will just have to soldier through the worse part.  It looks like they really meant more of the same.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited March 2017 #5
    Radiation burns

    The main difference between first round of chemo and second was that the radiation had gotten me so tired by then, and the radiation burns got worse and worse. My white counts went super low and I ended up getting sepsis and spending the last week of my treatment in the hospital. I'm not telling you this to make you scared just to alert you how sick some of us have gotten at the end of treatment. My whole crotch became a weeping wound and the diarrhea got so bad it came every 15 minutes even with all the diarrhea meds they could use, including tincture of opium which is rarely used anymore. I hope it doesn't get that bad for you and you get thru the next two weeks with a minimum of problems. 

  • Tushygirl
    Tushygirl Member Posts: 28 Member

    Radiation burns

    The main difference between first round of chemo and second was that the radiation had gotten me so tired by then, and the radiation burns got worse and worse. My white counts went super low and I ended up getting sepsis and spending the last week of my treatment in the hospital. I'm not telling you this to make you scared just to alert you how sick some of us have gotten at the end of treatment. My whole crotch became a weeping wound and the diarrhea got so bad it came every 15 minutes even with all the diarrhea meds they could use, including tincture of opium which is rarely used anymore. I hope it doesn't get that bad for you and you get thru the next two weeks with a minimum of problems. 

    I appreciate the heads up

    I perfer to know what can happen then celebrate when it doesn't.  I am funny that way.

    My blood counts have been really good except for the platelet count, especially the white ones.

  • Pat42
    Pat42 Member Posts: 23
    edited March 2017 #7
    And watch out for UTI symptoms

    My wife just finished two weeks ago, and is rapidly improving.  It was grueling as you already know.  Her fifth week was the worst.  We had read about very painful urination as a result of the radiation, and it was terrible for her.  But more than one of the posts I read on this forum talked about getting a UTI, so she had the lab test her, and they found that on top of all the treatment effects, she also had a UTI.  After two or three doses of cipro (antibiotic), she was much better with the urination problem.

       So week 6 for us was actually much better than week 5, hopefully that's a positive if you have that many treatments.  Her blood counts were actually much better after the second mitomycin than the first.  The doctors had told us it would be worse after the second dose, and they didn't give a good explanation of why it didn't turn out that way.  She had the Xeloda pills instead of the port 5FU, don't know if that could have made the difference or not.

      Hang in there! 

    Pat

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited March 2017 #8
    Worst case scenario

    I'm the same way, I want to know the worst case scenario and then work from that. Prepare for the worst and hope for the best!

  • Tushygirl
    Tushygirl Member Posts: 28 Member
    Thanks for the pep talk

    i got the "brick" today.  That what I call my pump since it is like having a brick strapled to my waist.  The doctors are really pleased with my blood count numbers. So that is a positive.  The radiation oncologist gave me a new gel to try that actually creates a water-proof barrier over the wounds.  He is hoping that it will stop my need to swear when pee hits the sores.  So far it is working like it is suppose to.  It takes 6 minutes to dry so i am still trying to come up with my technique to let it dry with no rubbing of parts.  

     

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited March 2017 #10
    You can do it Tushy

    You are in the home stretch now! Glad the doctor found something that helps the pain over the burn area. I went Au naturelle a lot at this point, even a fan aimed at crotch helped. Just wore a bathrobe hiked up to waist. We are all rooting for you, you'll be done at the end of next week right?

  • Tushygirl
    Tushygirl Member Posts: 28 Member
    edited March 2017 #11

    You can do it Tushy

    You are in the home stretch now! Glad the doctor found something that helps the pain over the burn area. I went Au naturelle a lot at this point, even a fan aimed at crotch helped. Just wore a bathrobe hiked up to waist. We are all rooting for you, you'll be done at the end of next week right?

    Mollymaude

    Frown

    no. I go into week 7.  

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    Ugh

    I'm sorry you have to go to week 7, hang in there!

  • Cappy
    Cappy Member Posts: 2
    edited March 2017 #13
    You're halfway there

    I was dianosed 3 days before Christmas 2009. Started treatment Feb 2010. I'm a survivor so keep thinking positive. I saw your post and had to register and answer you. Talk to your doctor about vaginal stenosis. Sex could be an issue after treatment. Your radiation burns will get worse so get soft dresses and don't wear underwear. Buy yourself an inner tube to sit on comfortably. I counted down the days until the end of treatment - 10 days, 9, 8 etc.   that helped me. Alot. Sending positive vibes your way.

  • Tushygirl
    Tushygirl Member Posts: 28 Member
    edited March 2017 #14
    Cappy

    Smile

    that was one of the first conversations we had. 

  • eihtak
    eihtak Member Posts: 1,473 Member
    sherry123 said:

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    sherry123....

    Hi,

    One thing I love about this forum is the variety of opinions shared and wealth of knowledge gained....thank you for your input!

    In my opinion, stress is a key factor in lowering the immune system and surely contributes in the initial growth and resulting diagnosis of cancer in many cases. Yet, sometimes the cause of cancer is genetic or related to a known virus or other environmental poison, and sometimes just a mystery. While lowering stress is important "after" diagnosis too, it is not enough to treat something like a visible tumor!! A combination of methods of treatment has proven to be successful for many cancer patients, and for me personally, that has included chemotherapy, radiation, and surgery, as well as a healthy dose of self-care and stress reduction. Without these treatments I would likely not be here today and I am thankful for the aggressive path recommended by my trusted doctors.

  • Tushygirl
    Tushygirl Member Posts: 28 Member
    edited April 2017 #16
    eihtak said:

    sherry123....

    Hi,

    One thing I love about this forum is the variety of opinions shared and wealth of knowledge gained....thank you for your input!

    In my opinion, stress is a key factor in lowering the immune system and surely contributes in the initial growth and resulting diagnosis of cancer in many cases. Yet, sometimes the cause of cancer is genetic or related to a known virus or other environmental poison, and sometimes just a mystery. While lowering stress is important "after" diagnosis too, it is not enough to treat something like a visible tumor!! A combination of methods of treatment has proven to be successful for many cancer patients, and for me personally, that has included chemotherapy, radiation, and surgery, as well as a healthy dose of self-care and stress reduction. Without these treatments I would likely not be here today and I am thankful for the aggressive path recommended by my trusted doctors.

    You are so nicer than I am.

    You are so nicer than I am.

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited April 2017 #17
    Tushygirl said:

    You are so nicer than I am.

    You are so nicer than I am.

    Tushygirl.....

    Haha, thanks.....

    Its hard to know where some people are coming from I guess?????

    Wink

  • Tushygirl
    Tushygirl Member Posts: 28 Member
    sherry123 said:

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    Why would you even post this?

    you know this is really an insensitive post.  You are referencing an old study without supplying an personal information.  I really can't imagine what type of person trolls a cancer site.

    Not only did you post this but you sent me the same information in a private message message

  • Tushygirl
    Tushygirl Member Posts: 28 Member
    eihtak said:

    Tushygirl.....

    Haha, thanks.....

    Its hard to know where some people are coming from I guess?????

    Wink

    Since I am in my hell week

    Laughing

    Since I am in my hell week and I have not had my morning pain pill, I only produce flames 

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited April 2017 #20
    Tushygirl said:

    Since I am in my hell week

    Laughing

    Since I am in my hell week and I have not had my morning pain pill, I only produce flames 

    Tushygirl....

    Good luck to you "flame-thrower"..... its been over 6 years since my initial dx and I have not forgotten the weeks of hell as you say. I will be thinking of you and hoping you get through swiftly.

    katheryn

  • sherry123
    sherry123 Member Posts: 26
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