Thinking about quitting chemo

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  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #22
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    EZLiving66 said:

    I just had a conference call

    I just had a conference call with my doctor and chemo nurse.  My nurse called to tell me my WBC was really low and they were trying to decide what they should do.  I told her about my plan to quit chemo and she said she wanted to see if she could get my doctor on the line because that would make a difference in how they treated this low count.  I told them my reasons and my doctor wanted me to think about it until my appointment on Tuesday when he would meet with me.  He said if I was going to stop, he would remove the infected port.  They thought if I stayed home this weekend away from others they wouldn't give me the neupogen shot.  They want me to rest over the weekend, eat REALLY good and come in Monday morning to get my blood tested again. 

    Mentally I'm feeling better than I've felt in a while.  Physically I feel like I've been wrung out and hung up to dry (my grandma would say that - LOL).  If I can just get one night of sleep, it would make all the difference in how I feel physically.

    Love,

    Eldri

    Happy that mentally you are

    Happy that mentally you are feeling better.  That is such good news.  Now if you can get the physical side in the same place.  I have never had night terrors.  they must be terrible.  I have had trouble sleeping for a long time. Most of the time I can't turn off my thinker.  Even before cancer, I would lay awake half the night rehashing what ever went on in my classroom the day before.  Since cancer my mind goes over every doctor's appointment and hospital visit I have had in the last 3 years.  Nueropathy never bothered much during the day, but at night my feet burned like a severe sun burn.  Gabapentin and Lorazapan have helped with that, but I think that they may have helped calm me down, because I have been sleeping better.  I have also tried adult color books to relax and am trying to put away my electronics for awhile before bedtime.  Tried sleepy time tea(that stuff isn't for me). Hot cocoa just gives me congestion.  For awhile I tried sleeping in my lazy boy in front of the TV( that actually worked )

      I hope you can find something that will help you get the sleep you so badly need.

    Hugs and prayers, Lou Ann

  • Unknown
    Unknown
    #23
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    Lou Ann M said:

    Happy that mentally you are

    Happy that mentally you are feeling better.  That is such good news.  Now if you can get the physical side in the same place.  I have never had night terrors.  they must be terrible.  I have had trouble sleeping for a long time. Most of the time I can't turn off my thinker.  Even before cancer, I would lay awake half the night rehashing what ever went on in my classroom the day before.  Since cancer my mind goes over every doctor's appointment and hospital visit I have had in the last 3 years.  Nueropathy never bothered much during the day, but at night my feet burned like a severe sun burn.  Gabapentin and Lorazapan have helped with that, but I think that they may have helped calm me down, because I have been sleeping better.  I have also tried adult color books to relax and am trying to put away my electronics for awhile before bedtime.  Tried sleepy time tea(that stuff isn't for me). Hot cocoa just gives me congestion.  For awhile I tried sleeping in my lazy boy in front of the TV( that actually worked )

      I hope you can find something that will help you get the sleep you so badly need.

    Hugs and prayers, Lou Ann

    Hi Lou Ann, me too!

    Your sleeping woos sound similar to mine, can't turn off the thinker.  I actually thought when diagnosed with cancer, oh great, now I can think about this for the rest of my life!  My neuropathy pain is now mostly at night, except for the fingertips.  You mentioned your Lazy Boy, I was wondering if sleeping in a recliner would help with the leg pain.  I don't have one, but I'd be game for buying a cheaper brand just to get through chemo and the aftermath.  Last night, I gave in and took a Motrin after I couldn't sleep, it helped, then around midnight, I got up and took a hot shower.  Finally something worked and I slept for 5 hours through.  Sorry Eldri, I'm sure you don't want to read about others being able to sleep when you desperately want some.  I will say, it there is anyway you can get some relief, it will probably do your mental side a great deal of good.

  • Lisa 00
    Lisa 00 Member Posts: 134 Member
    #24
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    quitting the poison

    I figured that calling the chemo what it is here is okay. 

    I'm 99% sure that, if you cornered a gynecologic oncologist at the right moment, they would admit that it all is a crap shoot and, really, it's the first 3 chemos that are the most important.  Obviously your quality of life has suffered greatly and your future quality of life (as well as possibly your life) is in danger as well. 

    I think you know what you want to do and your husband supports quitting and removing the port.  OH, and the port.  It's infected.  That is another big problem.  Get that freakin' thing out, is what I say.  Your WBC count is already way low, right?  An infected port with a low WBC count would scare the heck out of me. 

    Do what your gut tells you to do.  Best of luck, Sweetheart! 

    Lisa  

     

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    #25
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    giggs100 said:

    Port out

    Eldri have you thought about having a picc put in your arm.  Granted there is some daily maintenance that has to be done with that but it would help with them poking you looking for blood draws or chemo applications.  That is what they did for me when I had a port put in and then had a problem because they didn't stop my blood thinner drug and my port area keep seeping blood the whole day of my first day of chemo. After I had my first chemo application I had to return to the radio..... area for them to reopen my port area and cauterize some of the small blood vessels and add more stitches to the area and from there they went over to my left arm and put a picc in so they could continue with my next two applications of chemo plus be able to draw blood for testing from it.  It was a very long day for me (13 hours) for the first day of chemo.  Maybe something to talk to your doctor about.  My thoughts and prayers are with you that they find a solution for your problems.   It's enough for us to just being able to withstand going through chemo without ending up with all the problems.  

    Sending lots of hugs and prayers your way.  Please stay strong.  XOXO

    Jerri

    With my veins being so small

    With my veins being so small they didn't even consider a PICC line.  It usually takes at least two or three tries just to draw blood - one time we were in the teens.  I also develop infection very easily - UTI after my hysterectomy and now the port site.  I don't think he would even try it.  If anything he'd remove this port, clean it out, sew it up and put in a new port on the other side.  

    Love,

    Eldri

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    #26
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    Lisa 00 said:

    quitting the poison

    I figured that calling the chemo what it is here is okay. 

    I'm 99% sure that, if you cornered a gynecologic oncologist at the right moment, they would admit that it all is a crap shoot and, really, it's the first 3 chemos that are the most important.  Obviously your quality of life has suffered greatly and your future quality of life (as well as possibly your life) is in danger as well. 

    I think you know what you want to do and your husband supports quitting and removing the port.  OH, and the port.  It's infected.  That is another big problem.  Get that freakin' thing out, is what I say.  Your WBC count is already way low, right?  An infected port with a low WBC count would scare the heck out of me. 

    Do what your gut tells you to do.  Best of luck, Sweetheart! 

    Lisa  

     

    When I first talked to my

    When I first talked to my chemo nurse this afternoon and told her what I was thinking she said chemotherapy is in its infancy.  I told her we are the guinea pigs and she agreed.  She said sometimes it makes the cancer better, sometimes it doesn't help at all and sometimes the tumors actually grow.  I'm sure 100 years from now, people will look back and be amazed what we were subjected to just like we look back at medicine (remember the x-ray machines at the shoe stores?) and just shake our heads.

    For the past 30 years I have slept wonderfully.  I learned so many good sleep techniques during those horrible 10 years.  We have an extremely comfortable bed and have the same mattress at our other house.  I always loved relaxing and drifting off to sleep.  The only thing that kept me from sleeping through the night was my 4:00 a.m. to 5:00 a.m. bathroom trip.  Now I have to talk myself into just going in there.  

    I've also developed a rash on both my hands.  I noticed a little area but it's getting bigger and it itches so I put some cortisone cream on it.  My skin is extremely thin and just itching can cause it to bleed in normal times so I have to be careful not to get a skin infection.

    Love,

    Eldri

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #27
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    EZLiving66 said:

    When I first talked to my

    When I first talked to my chemo nurse this afternoon and told her what I was thinking she said chemotherapy is in its infancy.  I told her we are the guinea pigs and she agreed.  She said sometimes it makes the cancer better, sometimes it doesn't help at all and sometimes the tumors actually grow.  I'm sure 100 years from now, people will look back and be amazed what we were subjected to just like we look back at medicine (remember the x-ray machines at the shoe stores?) and just shake our heads.

    For the past 30 years I have slept wonderfully.  I learned so many good sleep techniques during those horrible 10 years.  We have an extremely comfortable bed and have the same mattress at our other house.  I always loved relaxing and drifting off to sleep.  The only thing that kept me from sleeping through the night was my 4:00 a.m. to 5:00 a.m. bathroom trip.  Now I have to talk myself into just going in there.  

    I've also developed a rash on both my hands.  I noticed a little area but it's getting bigger and it itches so I put some cortisone cream on it.  My skin is extremely thin and just itching can cause it to bleed in normal times so I have to be careful not to get a skin infection.

    Love,

    Eldri

    Allergic to Antibiotic?

    Hi Eldri:

    I am so sorry that you are going through all of this.   With regard to your itchy hands, what antibiotic are you taking for your infected port?   After getting my stent replaced the fourth time, I developed an allergic reaction to an antibiotic that they had previous given to me - Ciprofloxin.    My hands and feet itched like crazy.   I was coming out of anesthesia and had kicked my booties off.  I also heard a nurse say that I was getting blochy, but like I said I was still coming out of anesthesia.   

    I hope you can get your much need relief and sleep!

    My best to you,

     

    Kathy

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    #28
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    Kaleena said:

    Allergic to Antibiotic?

    Hi Eldri:

    I am so sorry that you are going through all of this.   With regard to your itchy hands, what antibiotic are you taking for your infected port?   After getting my stent replaced the fourth time, I developed an allergic reaction to an antibiotic that they had previous given to me - Ciprofloxin.    My hands and feet itched like crazy.   I was coming out of anesthesia and had kicked my booties off.  I also heard a nurse say that I was getting blochy, but like I said I was still coming out of anesthesia.   

    I hope you can get your much need relief and sleep!

    My best to you,

     

    Kathy

    I just finished my 7 day

    I just finished my 7 day regiment on ciprofloxacin so maybe that's why my hands look like this.  There's some red blotcheiness on my face too.  I'll show them it on Tuesday if it's not gone.  I also am quitting the probiotics.  The diarhhea is just too bad.  It just seems like I glue something back on and something else falls off.

    Today is a day of rest along with making a few cookies and getting the house ready for company.  Luckily our son is home this weekend since his girlfriend's college roommate is in town from Montana.  He's going to grill me salmon for lunch and make some candy for Christmas.  He doesn't know it but he's also stripping and making up beds with clean sheets.  Just simple everyday work is too much for me right now.

    Love,

    Eldri

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #29
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    EZLiving66 said:

    I just finished my 7 day

    I just finished my 7 day regiment on ciprofloxacin so maybe that's why my hands look like this.  There's some red blotcheiness on my face too.  I'll show them it on Tuesday if it's not gone.  I also am quitting the probiotics.  The diarhhea is just too bad.  It just seems like I glue something back on and something else falls off.

    Today is a day of rest along with making a few cookies and getting the house ready for company.  Luckily our son is home this weekend since his girlfriend's college roommate is in town from Montana.  He's going to grill me salmon for lunch and make some candy for Christmas.  He doesn't know it but he's also stripping and making up beds with clean sheets.  Just simple everyday work is too much for me right now.

    Love,

    Eldri

    Eldri, try to rest as much as possible

    and consume good blood boosting food. This is a difficult time of the year to not feel well- and you have certainly had significant health issues. It is traumatic enough to get cancer without the continuous problems you have had to contend with. I just hope that you continue to feel better each day. I believe that getting a cancer diagnosis is a game changer that can certainly lead to PTSD. I suspect I suffer from it but as time goes by I seem to be recovering from the trauma. My motto: "It is what it is" has forced me to accept reality. I try not to live with magical (make believe) thinking- as in how young children and many adults think. What's the point of that?  

    Love and good health are my wishes for you!

    Cathy

     

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    #30
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    Abbycat2 said:

    Eldri, try to rest as much as possible

    and consume good blood boosting food. This is a difficult time of the year to not feel well- and you have certainly had significant health issues. It is traumatic enough to get cancer without the continuous problems you have had to contend with. I just hope that you continue to feel better each day. I believe that getting a cancer diagnosis is a game changer that can certainly lead to PTSD. I suspect I suffer from it but as time goes by I seem to be recovering from the trauma. My motto: "It is what it is" has forced me to accept reality. I try not to live with magical (make believe) thinking- as in how young children and many adults think. What's the point of that?  

    Love and good health are my wishes for you!

    Cathy

     

    That's exactly what I've been

    That's exactly what I've been doing, Abby.  I've had salmon, chicken, eggs, brocolli, whole wheat bread, almonds, oranges, apple juice today alone.  My taste buds are still off but I just kept chewing away - chew, chew, swallow; chew, chew, swallow.  I don't want to have to get a blood transfusion if I can help it.  Problem is, it goes through me about as fast as I can eat it - LOL.

    I agree, I'm not a magical thinker either.  My whole life I've been the practical one.  Always have a Plan B in case Plan A doesn't work and then it doesn't hurt to have a Plan C up your sleeve.  But....getting cancer wasn't in ANY of those plans.  I think of my brother, who at 37, had an MRI because he thought he had damaged his left arm.  It was his heart and within three hours of that MRI, he was dead.  At least I "probably" have more time than that. Cool

    Love,

    Eldri

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