Pelvic hip pain and chemo #29

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Lou Ann M
Lou Ann M Member Posts: 996 Member
in Uterine/Endometrial Cancer #1

For the last 2weeks I have been having pain in my right hip and pelvis.  I tried Tylonal and even broke down and took a hydrocodone. neither helped one bit. I thought it had to be from the Taxol or bone marrow.  Yesterday and today were chemo # 29 days my Doctor had different ideas.  I could tell He thought the cancer may have metastisized to my bones.  CT scan on the 15th to check on any tumor growth and to see if anything shows up with the pelvic bones.  If not on to a MRI and possibly a PET scan.  He is proactive to get to the cause of my pain.  Before we started chemo yesterday Isaked for a pain med so I would be able to set for the 4 hours for the Taxol and he gave me a Oxicodone..In 15 minutes my pain was gone and has not returned. 

Today was the 7 1/2 hr Carbo treatment. everything went well for about four hre.  Then 15 minutes after the started running it at a faster rate I had a reaction to it again.  So we wil be trying a new kind next time..Something called Topotican.  Any boby have any experience with that?  it is given for 1 hr over 5 days with 2 weeks off.

fear of uncertainty is the worse.

Hugs and Prayers to all of you brave ladies.  You are all in my thought and hearts,  Lou Ann

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  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    #2
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    I'm sorry, Lou Ann.  Sorry

    I'm sorry, Lou Ann.  Sorry you have to wait for almost two weeks for the CT scan and sorry you had a reaction to your chemo drug today.  But, if the bone pain has stopped after taking the oxidodone, maybe it is just bone pain from the taxol and that was the right pain med to stop it.  

    I don't have any experience with the new chemo drug but did you try googling it?  

    I'm thinking about you and sending you positive thoughts and good vibrations!  (((Lou Ann)))

    Love,

    Eldri

  • Gardena
    Gardena Member Posts: 102
    #3
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    You're Right

    Fear of uncertainty is the worst.  We all have different ways of coping at times like this. You have mentioned you have a saint of a husband so I'm hoping he is there w you.  I'm sending you love and light w the intention of you being pain free and wo worry. (((Hugs)))

  • Editgrl
    Editgrl Member Posts: 903 Member
    #4
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    Uncertainty is the bugaboo

    At least your doctor IS proactive and looking for causes for the pain rather than just blindly prescribing painkillers.  Hopefully, nothing shows up on the scans.  I think the fact that the pain disappeared after the Oxycodone is a good sign.  

    Sending strength and peace,

    Chris

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #5
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    Editgrl said:

    Uncertainty is the bugaboo

    At least your doctor IS proactive and looking for causes for the pain rather than just blindly prescribing painkillers.  Hopefully, nothing shows up on the scans.  I think the fact that the pain disappeared after the Oxycodone is a good sign.  

    Sending strength and peace,

    Chris

    LouAnn

    I hope the pain stays away! And, that your body is just getting worn down and tired from that particiular chemo. Such a scary time for you and the waiting is so darn hard!

    Am I remembering correctly that your doctor was going to see if Medicare would cover a gene therapy for you? Seems like now is the time for that!!!!!

    Stay strong my friend and please reach out to us for support again and again and again. We all love you bunches!

    Love and Hugs,

    Cindi

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #6
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    TeddyandBears_Mom said:

    LouAnn

    I hope the pain stays away! And, that your body is just getting worn down and tired from that particiular chemo. Such a scary time for you and the waiting is so darn hard!

    Am I remembering correctly that your doctor was going to see if Medicare would cover a gene therapy for you? Seems like now is the time for that!!!!!

    Stay strong my friend and please reach out to us for support again and again and again. We all love you bunches!

    Love and Hugs,

    Cindi

    Cindi

    We are saving the genomic match as a last resort.  My medical Onc.said yesterday that it has some side effects that is is worried about for me.  It can cause bowel blockage and since I just went through that, he is afraid of what would happen if that would happen.  he said that surgery would be very difficult and dangerous.  I am so pleased with him.  he sure does look out for me.  Lou Ann

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #7
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    Gardena said:

    You're Right

    Fear of uncertainty is the worst.  We all have different ways of coping at times like this. You have mentioned you have a saint of a husband so I'm hoping he is there w you.  I'm sending you love and light w the intention of you being pain free and wo worry. (((Hugs)))

    I am blessed with a saint of

    I am blessed with a saint of a husband And he is there for me for what ever I need.  I also know that God is with through ever step.  A t the very beginning of this journey someone told me that is God didn't take this away , He would go through it with me, and He has.  I am truely blessed in so many ways.  Hugs and prayers , Lou Ann

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #8
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    Lou Ann M said:

    Cindi

    We are saving the genomic match as a last resort.  My medical Onc.said yesterday that it has some side effects that is is worried about for me.  It can cause bowel blockage and since I just went through that, he is afraid of what would happen if that would happen.  he said that surgery would be very difficult and dangerous.  I am so pleased with him.  he sure does look out for me.  Lou Ann

    Medical Care...

    Thanks for responding. Like you, I feel very fortunate with the medical care I have received. It is so darn important to be with doctors that we feel care about us and make decisions in our best interests.

    For anyone in the Florida area that is within driving distance to Tampa, I highly recommend Moffitt Cancer Center. Just thought I would throw that out there. :-)

  • Cucu me
    Cucu me Member Posts: 213 Member
    #9
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    Lou Ann M said:

    Cindi

    We are saving the genomic match as a last resort.  My medical Onc.said yesterday that it has some side effects that is is worried about for me.  It can cause bowel blockage and since I just went through that, he is afraid of what would happen if that would happen.  he said that surgery would be very difficult and dangerous.  I am so pleased with him.  he sure does look out for me.  Lou Ann

    Wish you luck

    my Hero!

    My cancer recurred right after( a month) the initial chemo was done, but following your high spirit

    I'm thinking positively(most of the time).

  • Maggie_mac
    Maggie_mac Member Posts: 32
    #10
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    Topotecan

    Dear Lou Ann,

    I tried topotecan last spring for about 5 infusions, done once a week.  I didn't have any painful side effects, but unfortunately my CA125 went back up into the mid-500s and my platelets dropped like a rock.  That was the first time I got sent home without an infusion.  After that didn't work, I did a two week wash-out and started on cisplatin.  I had already become platinum resistant, but the hope was that my body would forget.  It worked for about 6 months, and now I have had one infusion with Taxotere and am being switched to Gemzar.

    My oncologist of 4 years left the practice at the end of the year, and I am seeing another doctor in the practice.  I have seen this doctor in the past when my doctor was away so he is not totally unknown to me.  He said he had taken another look at my history and recommended the Gemzar so I think he had come to that conclusion before we even talked about my Taxotere side effects.  Unfortunately, my blood counts were so low he couldn't start the Gemzar.  We'll try again on Tuesday.  That will be my chemo #47.

    I have heard of other ladies who have had good results with topotecan, so don't take my experience too much to heart.  Let me know how the topotecan works for you and I'll report back on the Gemzar.  After 4 years, and 9 different chemo drugs alone and in combination for 46 infusions, my fear is that I'm running out of options.

    I too send my hugs and prayers to all the brave ladies.  Maggie 

  • Cucu me
    Cucu me Member Posts: 213 Member
    #11
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    Maggie_mac said:

    Topotecan

    Dear Lou Ann,

    I tried topotecan last spring for about 5 infusions, done once a week.  I didn't have any painful side effects, but unfortunately my CA125 went back up into the mid-500s and my platelets dropped like a rock.  That was the first time I got sent home without an infusion.  After that didn't work, I did a two week wash-out and started on cisplatin.  I had already become platinum resistant, but the hope was that my body would forget.  It worked for about 6 months, and now I have had one infusion with Taxotere and am being switched to Gemzar.

    My oncologist of 4 years left the practice at the end of the year, and I am seeing another doctor in the practice.  I have seen this doctor in the past when my doctor was away so he is not totally unknown to me.  He said he had taken another look at my history and recommended the Gemzar so I think he had come to that conclusion before we even talked about my Taxotere side effects.  Unfortunately, my blood counts were so low he couldn't start the Gemzar.  We'll try again on Tuesday.  That will be my chemo #47.

    I have heard of other ladies who have had good results with topotecan, so don't take my experience too much to heart.  Let me know how the topotecan works for you and I'll report back on the Gemzar.  After 4 years, and 9 different chemo drugs alone and in combination for 46 infusions, my fear is that I'm running out of options.

    I too send my hugs and prayers to all the brave ladies.  Maggie 

    Crossing my fingers for you,

    Lou Ann and Maggie,

    Hope these meds help you.

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #12
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    Maggie_mac said:

    Topotecan

    Dear Lou Ann,

    I tried topotecan last spring for about 5 infusions, done once a week.  I didn't have any painful side effects, but unfortunately my CA125 went back up into the mid-500s and my platelets dropped like a rock.  That was the first time I got sent home without an infusion.  After that didn't work, I did a two week wash-out and started on cisplatin.  I had already become platinum resistant, but the hope was that my body would forget.  It worked for about 6 months, and now I have had one infusion with Taxotere and am being switched to Gemzar.

    My oncologist of 4 years left the practice at the end of the year, and I am seeing another doctor in the practice.  I have seen this doctor in the past when my doctor was away so he is not totally unknown to me.  He said he had taken another look at my history and recommended the Gemzar so I think he had come to that conclusion before we even talked about my Taxotere side effects.  Unfortunately, my blood counts were so low he couldn't start the Gemzar.  We'll try again on Tuesday.  That will be my chemo #47.

    I have heard of other ladies who have had good results with topotecan, so don't take my experience too much to heart.  Let me know how the topotecan works for you and I'll report back on the Gemzar.  After 4 years, and 9 different chemo drugs alone and in combination for 46 infusions, my fear is that I'm running out of options.

    I too send my hugs and prayers to all the brave ladies.  Maggie 

    Hi, Maggie

    Thanks for the reply.  You have been on an even longer Journey than I have.  Keep on fighting and don't give up hope.  We can always hope that something new will come and maybe the chemo we are on now will be the one that works for us.  I have been sent home many times because of low platelets With the Taxol /Carbo.  I know that we are all such individuals and that what works for one doesn't for the next person.  Taxol/Carbo was working great for quite awhile until I had a reaction to he Carbo.  Switched to Doxil.  That didn't work out to well.  We tried desensityizing me to the Carbo by running it at a very slow rate over 7 1/2 hours.  That worked for 4 times and than on the 5th I had another reaction to it.  My CA 125 was slowly climbing so it wasn't working real well.  I guess it was time to try something new.  I am going to get the Topotecan for 5 days with 2 weeks off.  I hope the Gemzar works for you.  I have heard of it, but know nothing about it.  I hadn't even heard of Topotecan before. 

    I am hoping and praying for the bet for you.  Lou Ann

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #13
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    29 wasn't my lucky number

    Chemo #29 will go down in infamy as the worst ever. Ended up in the ER.  Severe pain in my back, left hip and abdomen.  Tried Oxicodone for the 1st time last night.  Doctor said I could take 1-2 tablets every 4-6 hours.  Then I can worry about constipation!!!.  My doctor is trying to figure out he cause of the pain and wanted to rule out another bowel blockage.  So why not go to the ER on Super Bowl Sunday for a CT Scan, Morphine and hydration.  Hugs and prayers, Lou Ann

  • Unknown
    Unknown
    #14
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    Lou Ann M said:

    29 wasn't my lucky number

    Chemo #29 will go down in infamy as the worst ever. Ended up in the ER.  Severe pain in my back, left hip and abdomen.  Tried Oxicodone for the 1st time last night.  Doctor said I could take 1-2 tablets every 4-6 hours.  Then I can worry about constipation!!!.  My doctor is trying to figure out he cause of the pain and wanted to rule out another bowel blockage.  So why not go to the ER on Super Bowl Sunday for a CT Scan, Morphine and hydration.  Hugs and prayers, Lou Ann

    What an awful time you are having with 29

    Right now, unfortunately, ER is the best place to be.  If they can just get the pain under control, maybe you can rest.  I too worry about constipation and that's why I don't take the hard stuff.  But with your severe pain, that's exactly what you need.  Get relief soon dear lady, so you can fight another day.  Hugs Nancy

  • Editgrl
    Editgrl Member Posts: 903 Member
    #15
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    Lou Ann M said:

    29 wasn't my lucky number

    Chemo #29 will go down in infamy as the worst ever. Ended up in the ER.  Severe pain in my back, left hip and abdomen.  Tried Oxicodone for the 1st time last night.  Doctor said I could take 1-2 tablets every 4-6 hours.  Then I can worry about constipation!!!.  My doctor is trying to figure out he cause of the pain and wanted to rule out another bowel blockage.  So why not go to the ER on Super Bowl Sunday for a CT Scan, Morphine and hydration.  Hugs and prayers, Lou Ann

    Oh, no, Lou Ann

    You have climbed so many mountains, it's not fair that more keep getting put in front of you.  That doesn't sound like the kind of Super Bowl party that anyone wants to attend!  Hope you get out soon!

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    #16
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    Lou Ann M said:

    29 wasn't my lucky number

    Chemo #29 will go down in infamy as the worst ever. Ended up in the ER.  Severe pain in my back, left hip and abdomen.  Tried Oxicodone for the 1st time last night.  Doctor said I could take 1-2 tablets every 4-6 hours.  Then I can worry about constipation!!!.  My doctor is trying to figure out he cause of the pain and wanted to rule out another bowel blockage.  So why not go to the ER on Super Bowl Sunday for a CT Scan, Morphine and hydration.  Hugs and prayers, Lou Ann

    I'm so sorry, Lou Ann, that

    I'm so sorry, Lou Ann, that you have to go through this but, I agree, the ER is the best place to be when you're in really bad pain.  I hate the opiate painkillers and can't figure out what their appeal is to addicts, but if you need them, you need them.

    I hope you can get a good night's rest and your doctors can figure out what the heck is wrong.  You have been through so much and certainly do not deserve this!!

    Love,

    Eldri

  • Gardena
    Gardena Member Posts: 102
    #17
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    Lou Ann M said:

    29 wasn't my lucky number

    Chemo #29 will go down in infamy as the worst ever. Ended up in the ER.  Severe pain in my back, left hip and abdomen.  Tried Oxicodone for the 1st time last night.  Doctor said I could take 1-2 tablets every 4-6 hours.  Then I can worry about constipation!!!.  My doctor is trying to figure out he cause of the pain and wanted to rule out another bowel blockage.  So why not go to the ER on Super Bowl Sunday for a CT Scan, Morphine and hydration.  Hugs and prayers, Lou Ann

    Lou Ann

    How are you feeling now? The meds working? You are so inspiring.  You have been through so much and yet your spirit is strong -- honestly,  you're an inspiration in perseverance and strength.  I hope you are feeling some relief from the pain and tomorrow brings healing. Sending you ((((big hugs)))) . 

  • Red Corvette
    Red Corvette Member Posts: 114 Member
    #18
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    Gardena said:

    Lou Ann

    How are you feeling now? The meds working? You are so inspiring.  You have been through so much and yet your spirit is strong -- honestly,  you're an inspiration in perseverance and strength.  I hope you are feeling some relief from the pain and tomorrow brings healing. Sending you ((((big hugs)))) . 

    Feel better Lou Ann.
    Keeping

    Feel better Lou Ann.

    Keeping fingers and toes crossed that your and my wife's pains go away soon.

    Red

  • molimoli
    molimoli Member Posts: 514
    #19
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    Lou Ann M said:

    29 wasn't my lucky number

    Chemo #29 will go down in infamy as the worst ever. Ended up in the ER.  Severe pain in my back, left hip and abdomen.  Tried Oxicodone for the 1st time last night.  Doctor said I could take 1-2 tablets every 4-6 hours.  Then I can worry about constipation!!!.  My doctor is trying to figure out he cause of the pain and wanted to rule out another bowel blockage.  So why not go to the ER on Super Bowl Sunday for a CT Scan, Morphine and hydration.  Hugs and prayers, Lou Ann

    I am feeling so helpless.So sorry to read this.

    Lou Ann I wish I could just wish your troubles away ,My heart is willing but the powers are not mine to use, I can only pray that your creator will intervene very soon. and fix your pained body. You have had a rough ride but hang in there nothing stays the same.Your wonderful spirit gives us needed lifts. We are here .Nuff love and comforting hugs,just imagine it there where you are, wherever. Moli with healing thoughts.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #20
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    molimoli said:

    I am feeling so helpless.So sorry to read this.

    Lou Ann I wish I could just wish your troubles away ,My heart is willing but the powers are not mine to use, I can only pray that your creator will intervene very soon. and fix your pained body. You have had a rough ride but hang in there nothing stays the same.Your wonderful spirit gives us needed lifts. We are here .Nuff love and comforting hugs,just imagine it there where you are, wherever. Moli with healing thoughts.

    LouAnn, I hope the meds are

    LouAnn, I hope the meds are working on your pain. Your poor body needs a break! I'm so sorry this happened to you.

    I hope you didn't have another blowel blockage!

    Others have already said it and I'll say it too... You bring all of us an amazing spirit and comfort.

    I pray that you heal quickly and can go back home soon.

    Love and Hugs,

    Cindi

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    #21
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    How are you doing?  Been

    How are you doing?  Been feeling any better after that awful chemo??

    Love,

    Eldri

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