Mom back in hospital after her first carbo/taxol last Monday

wendybill
wendybill Member Posts: 84
edited March 2014 in Ovarian Cancer #1
Just for the record, ovarian cancer sucks. I mean really--- all this misery with my mom and then to come to the site and discover Saundra and another in hospice care--- not to even mention that woman with the incredible blog. Ugh. I was hoping that the carbo/taxol would go well, but my mom seemed to get progressively weaker as the days went on---, diarrhea coming out of the colostomy, thrush, dehydration, etc... She was by herself and freaking out. She doesn't want another treatment but also doesn't want to die. I'm not sure what is going to happen and how we will manage. This is so very sad and scary. How did others do with the carbo/taxol? Does it get worse gas it goes forward? What do people do who live alone and have limited support during treatments?

Wendy

Comments

  • Barbara53
    Barbara53 Member Posts: 652
    #2
    your mom is a trooper
    Oh, Wendy, your mother is such a trooper to have made it this far. I think maybe the chemo was sugar-coated for you guys, because it can be rough for some people. My mother became incontinent. Unfortunately, it does get worse.

    Your mother has been in the hospital so much that I'm sure you're used up at this point. I know the feeling! I've been taking care of my mother almost two years, and have made at least 30 trips. Right now I'm home for a 6-day caregiver break, and my brothers and their wives are taking care of things. Even with a fine family team on the ground, things are very intense.

    I'm sure you can get visiting nurses (get a doctor's order) to come twice a week, but you may need to hire someone to come in each day. Where my mother lives, a bonded senior services agency charges $20 an hour, with minimum 4-hour visits to do whatever needs to be done. Recently on NPR I heard a report of a remote video monitoring service for seniors, with two-way open communication during set hours. The clients actually developed family-like relationships with the ladies who monitored them from a call center in the midwest.

    Good luck with this day.
  • wendybill
    wendybill Member Posts: 84
    #3
    Barbara53 said:

    your mom is a trooper
    Oh, Wendy, your mother is such a trooper to have made it this far. I think maybe the chemo was sugar-coated for you guys, because it can be rough for some people. My mother became incontinent. Unfortunately, it does get worse.

    Your mother has been in the hospital so much that I'm sure you're used up at this point. I know the feeling! I've been taking care of my mother almost two years, and have made at least 30 trips. Right now I'm home for a 6-day caregiver break, and my brothers and their wives are taking care of things. Even with a fine family team on the ground, things are very intense.

    I'm sure you can get visiting nurses (get a doctor's order) to come twice a week, but you may need to hire someone to come in each day. Where my mother lives, a bonded senior services agency charges $20 an hour, with minimum 4-hour visits to do whatever needs to be done. Recently on NPR I heard a report of a remote video monitoring service for seniors, with two-way open communication during set hours. The clients actually developed family-like relationships with the ladies who monitored them from a call center in the midwest.

    Good luck with this day.

    Funny you should mention the
    Funny you should mention the incontinence. My mom told me she has started "dribbling" this weekend. Now she has a bad headache with visual disturbance. Her CT scan was negative-thank god.
    My mom has a visiting nurse 3x a week for her wound and the colostomy. There is a fantastic agency in our neighborhood that will send caregivers and chore assistance workers out based on income. I called them last week. I'm just not sure it will be enough. I have one male sibling---in the profile pic and he's not really wanted to help. We had to pay for his plane tix just so he could see my mom awake. I feel alone and overwhelmed. My own kids (ages 9&8) have issues--aspergers and type 1 diabetes--so we have a lot going on.

    Day at a time.
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #4
    Your Mom
    Your Mom is having a rough time but if she can hang in there it might get better my first chemo with carbo/taxol was harder than the 2nd the third was worse but since then not as bad . Everyone is different but she should concentrate on getting strong in between treatments. I too had some of the dribbling but it has stopped now .
    Colleen
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454
    #5
    Cafewoman53 said:

    Your Mom
    Your Mom is having a rough time but if she can hang in there it might get better my first chemo with carbo/taxol was harder than the 2nd the third was worse but since then not as bad . Everyone is different but she should concentrate on getting strong in between treatments. I too had some of the dribbling but it has stopped now .
    Colleen

    First Chemo
    I am so sorry your mom is having a rough time with the chemo.
    My oncologist told me that the first chemo is always the worst.
    Everyone's body handles differently-and we all worry about every ache and pain and strange symptom. I hope that as the days continue she will build back up and feel better.

    Hugs and healing!
  • azgrandma
    azgrandma Member Posts: 609 Member
    #6
    hopeful girl 1 said:

    First Chemo
    I am so sorry your mom is having a rough time with the chemo.
    My oncologist told me that the first chemo is always the worst.
    Everyone's body handles differently-and we all worry about every ache and pain and strange symptom. I hope that as the days continue she will build back up and feel better.

    Hugs and healing!

    It will be ok
    Honey everything will turn out ok, just you wait and see.

    This chemo does suck just like you said, just pray and ask God to help yoru Mother, he will.

    We are all here if you need to talk
    Love Lynda
  • kikz
    kikz Member Posts: 1,345 Member
    #7
    azgrandma said:

    It will be ok
    Honey everything will turn out ok, just you wait and see.

    This chemo does suck just like you said, just pray and ask God to help yoru Mother, he will.

    We are all here if you need to talk
    Love Lynda

    It's tough
    The carbo/taxol is rough. I ended up in the hospital for eight days after the first round because my white blood count went so low. I made it through the second though it was hard. I ended up in the hospital for four days after the third because my electrolytes took a dive. I was lightheaded all the time and had "accidents" because I couldn't make it to the bathroom. I even fainted, fell and hit my head. I posted here that this didn't seem worth it. Now after making it seem so horrible, I can say that my doctor declared me in remission and all the hard times seems like a big blur. I am feeling very well and enjoying every minute of it. Unfortunately we have to go through so much to get better. But I can say now it is worth it. I am alive and am starting to feel like the person I was before I was diagnosed on 3/16/2010.

    So tell your mom to hang in there. It will seem like she can't take anymore, but she can and soon she will feel better.

    Karen
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #8
    Wendy...my first Carbo/Taxol
    Wendy...my first Carbo/Taxol treatment was so bad, I left the building in a wheelchair. I passed out, my BP tanked...it was awful. When I came around, there were three nurses and my doctor hovering over me, they had attached an oxygen mask to my face, and they all wanted to know, "What's going on; what are you feeling?" I felt like telling them, "I think I'm dying."

    But after that, every single one got easier. I had 6 Carbo/Taxol treatments, and 9 Taxol only infusions (consolidation therapy, almost the same strength as the first line Taxol) and it's a non-event now. In fact, last month I boarded a plane and went out of town for 3 days the day after chemo.

    The end result, for me, was well worth it. My CA 125 is 6.4 and my CT was clear. My biggest complaint these days isn't the chemo, or the Cancer - it's the huge hernia I can't have fixed until after the first of the year. I'm not supposed to lift anything over 5 pounds and that has really cramped my style!

    I hope this gives you and your mom hope. Trust me, things will get better.

    Carlene
  • wendybill
    wendybill Member Posts: 84
    #9
    Hissy_Fitz said:

    Wendy...my first Carbo/Taxol
    Wendy...my first Carbo/Taxol treatment was so bad, I left the building in a wheelchair. I passed out, my BP tanked...it was awful. When I came around, there were three nurses and my doctor hovering over me, they had attached an oxygen mask to my face, and they all wanted to know, "What's going on; what are you feeling?" I felt like telling them, "I think I'm dying."

    But after that, every single one got easier. I had 6 Carbo/Taxol treatments, and 9 Taxol only infusions (consolidation therapy, almost the same strength as the first line Taxol) and it's a non-event now. In fact, last month I boarded a plane and went out of town for 3 days the day after chemo.

    The end result, for me, was well worth it. My CA 125 is 6.4 and my CT was clear. My biggest complaint these days isn't the chemo, or the Cancer - it's the huge hernia I can't have fixed until after the first of the year. I'm not supposed to lift anything over 5 pounds and that has really cramped my style!

    I hope this gives you and your mom hope. Trust me, things will get better.

    Carlene

    Helpful
    Gosh--- thanks for your comments. Yesterday seemed like a rough day. My mom is still in the hospital and her biggest complaint at this time is continued partial vision loss. She describes only being able to see parts of things. They did a CT yesterday and it was negative. They are going to do an MRI this morning. I'm not sure if they are looking for a tumor or what. We are both scared. It has been one week since the infusion. When do people typically start feeling better?
  • lenjam
    lenjam Member Posts: 51
    #10
    wendybill said:

    Helpful
    Gosh--- thanks for your comments. Yesterday seemed like a rough day. My mom is still in the hospital and her biggest complaint at this time is continued partial vision loss. She describes only being able to see parts of things. They did a CT yesterday and it was negative. They are going to do an MRI this morning. I'm not sure if they are looking for a tumor or what. We are both scared. It has been one week since the infusion. When do people typically start feeling better?

    Hang in there
    My mom had many problems with the first couple infusions. She's had 4 now and 4 more to go. Still doesn't feel great after but I do think it's gotten easier if only a little, it's still something. My mom seems to feel good the day after, the next day not so good and third day horrible. Then she starts to come around after that. The week before her next infusion her white blood count drops and she doesn't feel so good again. Then it goes back up enough so she's been able to have her next infusion. I tried to get my mom to keep a diary of how she feels/felt so she knows what's coming. She hasn't. I've tried to do it for her with what she tells me. I know it's not the same as her doing it for herself, but, I can look back and say: yeah, that happened last time or that didn't happen, you need to talk to the doc.
    Keeping you in my prayers!
  • msfanciful
    msfanciful Member Posts: 559
    #11
    Hi Wendy,
    Just wanted to
    Hi Wendy,

    Just wanted to say, I too had incontinence, but over time it finally ceased. Sometimes
    the incontinence is a result of the surgery as well.

    Carbo/taxol combination was a verrryyy rough experience for me as well, and if your mom can get through this treatment and focus on healing once doing so, there's always a possibility she can improve.

    I'm stage iv ovarian cancer and you're welcome to read my profile for encouragement!

    I wish the best for you and your mother.

    Sharon

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