Bad bad bad day..

I got pet scan results yesterday evening. Not good. Cancer cells have spread to numerous lymph nodes in thorax, bowel and armpit. I am so upset. I have had six rounds of cisplatin/taxol and old tumors die while new ones grow. I don't understand this. I thought it either works or does not work.

 

I'll be seeing my doctor tomorrow. We spoke on the phone yesterday and he mentioned combination of chemotherapy and radiation.

Has anyone tried IMRT or Tomotherapy? Any other chemo drugs? I am so frustrated and I don't know what to expect....

Comments

  • babe12
    babe12 Member Posts: 103
    Ioanna, I am so sorry to hear

    Ioanna, I am so sorry to hear this. I don''t really understand how chemo kills old tumors & lets new ones grow. Cancer is such a sneaky little b@st@rd. I had 3 rounds (each that lasted 5 continous days) of 5fu and cisplatin along with concurrant radiation, then salvage surgery to remove just about everything. I remember my friend Kitty (ronmybaby) had topecan chemo.

    I'll be thinking about you & sending up prayers. Take care & keep us posted.

    Babe

  • ioanna
    ioanna Member Posts: 43
    babe12 said:

    Ioanna, I am so sorry to hear

    Ioanna, I am so sorry to hear this. I don''t really understand how chemo kills old tumors & lets new ones grow. Cancer is such a sneaky little b@st@rd. I had 3 rounds (each that lasted 5 continous days) of 5fu and cisplatin along with concurrant radiation, then salvage surgery to remove just about everything. I remember my friend Kitty (ronmybaby) had topecan chemo.

    I'll be thinking about you & sending up prayers. Take care & keep us posted.

    Babe

    Thank you very much Babe!

    Thank you very much Babe! Your support means really a lot to me :)

    Did this treatment work for you?

  • ccfighter
    ccfighter Member Posts: 476
    I'm so sorry that you have

    I'm so sorry that you have received this news.  I know how disheartening it is.  I wish I could make it all go away.

    i had IMRT to the pelvis during my initial therapy and then electron radiation at my recurrence which doesn't penetrate very far since my tumor was located on my anterior abdominal wall.  Hopefully radiation can kill those new tumors quickly and keep this disease at bay forever.  

     

    How are you feeling?  I hope that you are feeling well.  Lots of tricks in the bag.  Stay hopeful.  My prayers and positive energy are heading your way.  Hugs.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,360 Member
    Ioanna, I am sorry to hear

    Ioanna, I am sorry to hear this.  I think we can all hear your heart in the title of this thread.  No doubt this is difficult, so go ahead and cry, scream, throw pillows.  Tomorrow you can see your doctor and make you next plan. 

    I had IMRT and it was ok.  It is not a "point and shoot", it is a graduated beam so it is stronger in some places and less in others.  As the other ladies have said, there are a lot more tools in the toolbox now. 

    <<virtual hugs>>

  • babe12
    babe12 Member Posts: 103
    ioanna said:

    Thank you very much Babe!

    Thank you very much Babe! Your support means really a lot to me :)

    Did this treatment work for you?

    Ioanna, yes this treatment

    Ioanna, yes this treatment did work for me. I was stage 4a vaginal cancer, no lymph nodes involved, but I had a very large tumor. The chemo & radiation had shrunk the tumor so much the radiologist couldn't tell where it had originated. The surgery was to keep it from coming back.  I was dx on 9-23-11 and I'm still in remission. 

    We're all here for you, hang in there!!!

    babe

     

  • ioanna
    ioanna Member Posts: 43

    Ioanna, I am sorry to hear

    Ioanna, I am sorry to hear this.  I think we can all hear your heart in the title of this thread.  No doubt this is difficult, so go ahead and cry, scream, throw pillows.  Tomorrow you can see your doctor and make you next plan. 

    I had IMRT and it was ok.  It is not a "point and shoot", it is a graduated beam so it is stronger in some places and less in others.  As the other ladies have said, there are a lot more tools in the toolbox now. 

    <<virtual hugs>>

    Thanks thanks and again

    Thanks thanks and again thanks!

    Just came back from the doctor. Things are a bit better than what we initially thought. I am going to do IMRT and chemotherapy to improve radiation results.

    it seems that most of the lymph nodes that reacted to Pet scan were only damaged by chemo and not by cancer :D

     

    I Aam so happy I could actually dance!!!!

     

    xxxxx

  • ccfighter
    ccfighter Member Posts: 476
    ioanna said:

    Thanks thanks and again

    Thanks thanks and again thanks!

    Just came back from the doctor. Things are a bit better than what we initially thought. I am going to do IMRT and chemotherapy to improve radiation results.

    it seems that most of the lymph nodes that reacted to Pet scan were only damaged by chemo and not by cancer :D

     

    I Aam so happy I could actually dance!!!!

     

    xxxxx

    Whooooooo Hooooooo!!!!!  I'm

    Whooooooo Hooooooo!!!!!  I'm dancing with you.  Go forth and nuke those last cancer cells.  So happy for you.  Hugs.

  • funbeadgirl
    funbeadgirl Member Posts: 181 Member
    bad day today but not tomorrow

    I am so sorry you are having a bad day...I truly hope you get some information from doctor and understand what direction to take. It's important to take it one test, one appointment and one decision at a time. Worry is a part of the cancer curse, but please try not to borrow trouble from tomorrow at the present day, you may imagine it worse than it is then your worry will have sapped your energy. Easier said than done I know all to well.

    i have been in the fight for six years now, just had last chemo and am very sick, so much so that I don't think I will take any more treatments no matter what my PET scan reveals, I just need a break. From an MRI two weeks ago, I know I have at least one new metastes, so I guess I found my answer. For now I am going to work on getting stronger each day, and getting back to doing the things I love to do...chemo will wait.

    i hope you have a support system, someone you can talk to and feel safe with. I have found that my strength has come from my faith of course but also from knowing that I have others looking out for me and ready to cheer me on or to cry with or laugh with...which is my preferred expression of emotion!

    be strong and stand firm in the face of this evil! You can do it girl!

  • ioanna
    ioanna Member Posts: 43

    bad day today but not tomorrow

    I am so sorry you are having a bad day...I truly hope you get some information from doctor and understand what direction to take. It's important to take it one test, one appointment and one decision at a time. Worry is a part of the cancer curse, but please try not to borrow trouble from tomorrow at the present day, you may imagine it worse than it is then your worry will have sapped your energy. Easier said than done I know all to well.

    i have been in the fight for six years now, just had last chemo and am very sick, so much so that I don't think I will take any more treatments no matter what my PET scan reveals, I just need a break. From an MRI two weeks ago, I know I have at least one new metastes, so I guess I found my answer. For now I am going to work on getting stronger each day, and getting back to doing the things I love to do...chemo will wait.

    i hope you have a support system, someone you can talk to and feel safe with. I have found that my strength has come from my faith of course but also from knowing that I have others looking out for me and ready to cheer me on or to cry with or laugh with...which is my preferred expression of emotion!

    be strong and stand firm in the face of this evil! You can do it girl!

    thank you for everything:)

    thank you for everything:) Your help has been huge!!!

     

    So. I went to the hospital yesterday. I had a planning ct and saw my oncologists. Today I am having some more tests. My skin color is not good and my urine is very dark. Doctor said I might have hemolytic anemia.

     

    Have you ever heard of this???

  • ccfighter
    ccfighter Member Posts: 476
    ioanna said:

    thank you for everything:)

    thank you for everything:) Your help has been huge!!!

     

    So. I went to the hospital yesterday. I had a planning ct and saw my oncologists. Today I am having some more tests. My skin color is not good and my urine is very dark. Doctor said I might have hemolytic anemia.

     

    Have you ever heard of this???

    I'm glad things are moving

    I'm glad things are moving forward for you.  Im sorry to hear about your other problems.  I hope that they get the anemia thing sorted out soon.  I know chemo can cause these sorts of things, so hopefully just a temporary bump in the road and a little time will be all you need to get things back to right.  Hugs.

  • emilyjb
    emilyjb Member Posts: 2

    bad day today but not tomorrow

    I am so sorry you are having a bad day...I truly hope you get some information from doctor and understand what direction to take. It's important to take it one test, one appointment and one decision at a time. Worry is a part of the cancer curse, but please try not to borrow trouble from tomorrow at the present day, you may imagine it worse than it is then your worry will have sapped your energy. Easier said than done I know all to well.

    i have been in the fight for six years now, just had last chemo and am very sick, so much so that I don't think I will take any more treatments no matter what my PET scan reveals, I just need a break. From an MRI two weeks ago, I know I have at least one new metastes, so I guess I found my answer. For now I am going to work on getting stronger each day, and getting back to doing the things I love to do...chemo will wait.

    i hope you have a support system, someone you can talk to and feel safe with. I have found that my strength has come from my faith of course but also from knowing that I have others looking out for me and ready to cheer me on or to cry with or laugh with...which is my preferred expression of emotion!

    be strong and stand firm in the face of this evil! You can do it girl!

    Dear funbeadgirl

    Hello friend,

    I have been reading your post, my mother has recently been diagnosed with vulvar cancer and we are in week 5 of radiation. Your journey and words of comfort to others has been inspirational for us. We have no idea where this will lead or what the future holds but plan to make the most of 'now' as you've done. Good luck in this ongoing turbulent voyage, we are sending you good thoughts and know that lots of love eminates from these pages.

    Emily

  • funbeadgirl
    funbeadgirl Member Posts: 181 Member
    emilyjb said:

    Dear funbeadgirl

    Hello friend,

    I have been reading your post, my mother has recently been diagnosed with vulvar cancer and we are in week 5 of radiation. Your journey and words of comfort to others has been inspirational for us. We have no idea where this will lead or what the future holds but plan to make the most of 'now' as you've done. Good luck in this ongoing turbulent voyage, we are sending you good thoughts and know that lots of love eminates from these pages.

    Emily

    Dear Emily,
    thank you for

    Dear Emily,

    thank you for your kind words, I derive much encouragement from the ladies here and how they have persevered throughout their trials, and I am pleased if my experience has given even one person a glimmer of hope. I read your other post regarding the radiation issues with your mom, I remember when I had to deal with my own side effects. Honestly the best thing that helped me was to not wear undergarments. I lived in nightgowns and skirts, or yoga pants that were too big. Even when I went to church, I did not wear underwear under my skirt,I'm know it's hard for some to do, but I believe that is what helped me heal. I'm would definetly mention the bladder issues to the doctor, there could be other reasons for that too.

    currently I am holding my own right now, I stopped chemo just so I could feel better for a little bit but I am sure I will go back to it in a couple months. I'm having some pain issues in shoulder, not sure if it's a muscle problem or related to one of my many metastes in spine or shoulder, dealing with it by going to physical therapy and taking pain meds...which has not helped in past week.

    there are always good things to focus on during even the worst situation, I focus on my beautiful grandkids and the joy I get from spending time with them, and I have many great family and friends that support me and give me a boost when I need it. I'm still able to get up in morning and enjoy that day of life, I take it one day at a time. I hope your mom will be able to finish her radiation and then begin the recovery process , it takes some time but she can do it , all she needs to do is find a reason to get through it. I know they aren't trying to cure me anymore, now it is just trying to give me as much time as I can get and be able to enjoy it...and I'm okay with that, after all none of us has any guarantees, whether we have cancer or not.

    enjoy each day you have and make the most of it.