NED............YEAH...

Patti1
Patti1 Member Posts: 109 Member
edited March 2014 in Colorectal Cancer #1
Hello All,

Well we just got back from Cancer Center. Yeah......and another sigh of relief.
Ct shows no evidence for recurrent cancer. I am still doing the NED Dance. It seems that
waiting for tests and reports are harder than all the chemo and doctors appointments.
Thank you all so much for your support and kind words. This will let you know that
we can beat this dragon, and even with Stage IV cancer we can win. Never give up hope and
keep your faith strong.

Patti & Dennis

Comments

  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    Congratulations!!
    Hi Patti!

    Congratulations on continuing the NED Dance!!! I am thrilled for you!!!! Maybe you could refresh my memory... I'm not sure if I have read your story/history... but are you saying that you were diagnosed with Stage IV, that the cancer had spread to other areas, and through various chemo, radiation or surgery, you have managed to get yourself into Stage NED??? That is truly exciting and inspirational!!! How long have you been NED?

    This is wonderful news!!

    HUGGGGGGGGS,

    Cheryl
  • Patti1
    Patti1 Member Posts: 109 Member

    Congratulations!!
    Hi Patti!

    Congratulations on continuing the NED Dance!!! I am thrilled for you!!!! Maybe you could refresh my memory... I'm not sure if I have read your story/history... but are you saying that you were diagnosed with Stage IV, that the cancer had spread to other areas, and through various chemo, radiation or surgery, you have managed to get yourself into Stage NED??? That is truly exciting and inspirational!!! How long have you been NED?

    This is wonderful news!!

    HUGGGGGGGGS,

    Cheryl

    NED Reply/Brief History
    Cheryl,

    My husband is the person NED. Dennis was diagnosed 1/5/2006 after going for a colonoscopy due to some minor rectal bleeding. The look on the doctors face told the whole story. I knew we were in for a battle. The biopsy came back as Stage IV Colorectal Cancer, soon after we were sent for a Pet Scan and were then told in had spread to his liver and possibly to lung also as a small spot did show up but did not lite on Pet Scan. He then started chemo, Avastin,5FU and the whole cocktail assortment. We were not really feeling good about the doctors we had or the choices we were given (that set of docs said surgery was not a option) we followed our heart and went for a 2nd opinion, guess what surgery was a option. We stopped chemo for 6 weeks and on 7/14/2006 underwent surgery. That was a bit more than we had planned for, had a complete lower resection with a permanent colostomy and a liver resection, 4 weeks later started chemo again with rad treatments, then followed by oral chemo (Xeloda). With a strong will and good physical activity and a good surgeon we have somehow managed to stay NED.We follow our doctors regimen to the tee. We have had our ups and downs and our share of issues but deal with them as they come along. I thank all of you that have been there for us throughout the years.
    Patti
  • Kanort
    Kanort Member Posts: 1,272 Member
    Congratulations!
    Congratulations Dennis and Patti! Your teamwork and diligence in finding options certainly has contributed to Dennis' wellness! Thanks for giving hope to so many our Stage IV Semi-colons!

    Hugs,

    Kay
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    Patti1 said:

    NED Reply/Brief History
    Cheryl,

    My husband is the person NED. Dennis was diagnosed 1/5/2006 after going for a colonoscopy due to some minor rectal bleeding. The look on the doctors face told the whole story. I knew we were in for a battle. The biopsy came back as Stage IV Colorectal Cancer, soon after we were sent for a Pet Scan and were then told in had spread to his liver and possibly to lung also as a small spot did show up but did not lite on Pet Scan. He then started chemo, Avastin,5FU and the whole cocktail assortment. We were not really feeling good about the doctors we had or the choices we were given (that set of docs said surgery was not a option) we followed our heart and went for a 2nd opinion, guess what surgery was a option. We stopped chemo for 6 weeks and on 7/14/2006 underwent surgery. That was a bit more than we had planned for, had a complete lower resection with a permanent colostomy and a liver resection, 4 weeks later started chemo again with rad treatments, then followed by oral chemo (Xeloda). With a strong will and good physical activity and a good surgeon we have somehow managed to stay NED.We follow our doctors regimen to the tee. We have had our ups and downs and our share of issues but deal with them as they come along. I thank all of you that have been there for us throughout the years.
    Patti

    Excellent!!
    Patti.... thanks for going over the history again (I'm sure you've written it out many times over the years)... but depending on when we come on the board, sometimes we all need reminders of who has gone through what, what were their options, what options did they take and how are they doing now :)

    WOW.... to hear that Dennis and you have gone through all of that, with the first set of doctors not giving much in the way of options or hope... look at you now!!! Whoooooooo!!! That is so darn exciting.... I'm excited for both of you and excited for what it means to the rest of us :)

    When I was first diagnosed in Dec 2006, I was a Stage III.... the tumour had perforated through the intestinal wall, and 1 out of 17 lymph nodes tested positive. Not knowing ANYTHING about cancer, staging, treatments, etc... even though all of this came as a shock to me, I figured, "Heck, I'm no spring chicken, but I'm also not a senior citizen yet... surely I can beat this thing?" The thought of death being a big possibility just wasn't a reality for me... no matter how much I tried to prepare myself for the "possibility". My surgeon at the time (who I adored), did tell me that this is very, very serious and that until they opened me up, he wouldn't know how bad it was in there... but he has only seen a tumour perforation this bad a couple of times in his life. There is a good chance once they open me up, they are going to have to just close me up and I may not be leaving the hospital. The shock of a doctor telling me this was just way too surreal. I had family and friends with me in the hospital around the clock... and I was there for a whole month. But, that dream of a surgeon not only opened me up, cut out the nasty bits, sewed me up so everything is working better than ever, he even repaired two hernias while he was in there... two that I didn't even know I had . He joked afterwards that he did those two free of charge ... the joke being, of course, that up here we don't have to worry about any hospital expenses, drugs, specialists, etc... just tv rental .

    Anywho... I knew I was in for chemo and radiation after that but I figured I've made it this far, through the worst of it... so no matter how tiring or sickly I feel with the chemo or radiation... I was bound and determined I was going to make it through them and enjoy it, because for each time I felt fatigued or sickly, it would mean the chemo/radiation is doing it's job and killing off the cells. Hehehe.. I won't tell you what I took for the feeling of nausea because I'm not sure it's allowed on the public board, but suffice it to say, I quit smoking ciggies over 7 years ago... but a puff or two of the weed that looks like baby maple leafs, did the trick that no amount of pharmaceutical anti-nausea med ever did. I could not believe just how well it did work, so throughout all 8 months of chemo, I never once felt nausea to the point where I was sick.

    Anywho... once I finished the chemo and radiation, as per my oncologist's plan, I was so proud of myself and patted myself on the back... I had done it!! Then, a month or two after the chemo was finished, my CEA levels started rising... so a PET scan was ordered. Sure enough, my right adrenal gland lit up like a Christmas tree, and one spot on my lung. A further CAT scan to the lungs showed multiple spots... but they aren't really acting like cancer would act... so we are taking our time with them. They are sure one of them is cancer... and a second one may also be cancer... but the others, the jury is still out.

    But, the fact the cancer had spread to the adrenal and possibly the lung, that meant I was now staged as a Stage IV... metastacized colon cancer... or advanced colon cancer. That is a real blow to one's confidence... just hearing those words.

    Soooo, you can imagine how your and Dennis's story about being a Stage IV, going through the journey of treatments that you had to go through... and he's come out NED!! That is sooo exciting... and I am celebrating with both of you!!! :)

    Keep telling your story because as newbies come on this board, scared and not sure what's ahead for them... when we hear these stories it's like this huge curtain of relief opens up :)

    Huggggggs,

    Cheryl
  • impactzone
    impactzone Member Posts: 555 Member
    AWESOME!
    I love hearing that from any stage... Give so much hope out!
    Congrats and thanks

    Chip
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Wonderful!
    That's just wonderful! I'm so glad for both of you.

    *hugs*
    Gail
  • mbadgle
    mbadgle Member Posts: 18

    AWESOME!
    I love hearing that from any stage... Give so much hope out!
    Congrats and thanks

    Chip

    DITTO
    Its Great to hear good news like this. Just recently being Stage IV .... Its helps those like me just starting to fight this know we can beat also. Congrats also....

    Mike
  • VickiCO
    VickiCO Member Posts: 917
    Thanks Patti & Cheryl
    I am stage 3, through the wall and 1 lymph node involved. It hasn't spread now, but the possibility is always hanging out there. Your post, Patti, is very encouraging. Thank you for sharing. We newbies need to hear these stories (I am 2 weeks out from DX.) And Cheryl, you are my hero. You have such an outlook! I hope, as I travel this journey, I can be like you. I start chem/radiation on the 23rd.

    Stay Strong! Vicki
  • taraHK
    taraHK Member Posts: 1,952 Member
    Congratulations!
    Congratulations!!!!! Wonderful news! I just LOVE hearing news like this! Thank you for sharing with us -- it really gives everyone a lift. Hope you are finding good ways of celebrating!
    Tara
  • kmygil
    kmygil Member Posts: 876 Member
    Made my day!
    Hi Patti & Dennis,

    Just wanted to let you know you made my day! I just sat down after tearing off my clothes & dancing naked, and my husband is still shaking his head in disbelief....:) Congratulations!!!!

    Hugs,
    Kirsten
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    VickiCO said:

    Thanks Patti & Cheryl
    I am stage 3, through the wall and 1 lymph node involved. It hasn't spread now, but the possibility is always hanging out there. Your post, Patti, is very encouraging. Thank you for sharing. We newbies need to hear these stories (I am 2 weeks out from DX.) And Cheryl, you are my hero. You have such an outlook! I hope, as I travel this journey, I can be like you. I start chem/radiation on the 23rd.

    Stay Strong! Vicki

    Hang in there...
    Hang in there, Vicki! You most certainly can do it!! 2 weeks out from DX... you are still in shock about the fact your world has turned upside down, so everything probably seems a little on the overwhelming side. But trust me... if you take everything one day at a time, rather than try and think of the whole 12 rounds of chemo or the 5 weeks of radiation. When you just focus on the current day, you will always be able to say, "Well, geez Louise... that wasn't bad at all!" And if you do have a not so good day, you will go, "Well, is that the worst of it... because if that is the worst, that really wasn't so bad either!"

    What is truly amazing is just how much abuse our bodies can take... the abuse of having cancer in us for so long and us not knowing, to the abuse of pumping ourselves full of toxins, both environmentally on a daily basis, as well as when we purposely allow toxins to be injected in us so that they will kill off the nasty stuff. Even when it kills off the good cells, our bodies always fight back, regenerate any of the good cells that got killed off... and are ready and raring to get back into the swing of things. How they do that is beyond me, other than we are a lot stronger than we give ourselves credit for ;)

    So no need to worry about how the treatments are going to be... our bodies aren't about to let a little chemo or radiation do us in! And if you look forward to the day when the treatments are over and the beast has been beat into submission... then life goes on and there really was no need stressing out over the "What ifs" :)

    Hugggggs,

    Cheryl
  • msccolon
    msccolon Member Posts: 1,917 Member
    Dancing with NED is awesome!
    So glad to hear Dennis continues to dance! You and he must be feeling really good! Definitely an inspiration for us all!
    mary
  • Sandi1
    Sandi1 Member Posts: 277
    Great News
    Congratulations Patti! This gives my husband and I so much hope that he too can be NED someday. Email me and we will chat - alot has happened since I last emailed you.

    Sandi
  • peterhw
    peterhw Member Posts: 69
    Hi Patti
    I am so happy that Dennis is NED and doing well. Thank you for your email when I first dxed with stage 4 rectal cancer. I have made good progress with pre-surgery chemo. The tumors in rectum and liver are shrinking. I have finished 10 of the 12 chemo. Two more to go and then will have surgery.


    Thanks.

    Peter
  • menright
    menright Member Posts: 256 Member
    VickiCO said:

    Thanks Patti & Cheryl
    I am stage 3, through the wall and 1 lymph node involved. It hasn't spread now, but the possibility is always hanging out there. Your post, Patti, is very encouraging. Thank you for sharing. We newbies need to hear these stories (I am 2 weeks out from DX.) And Cheryl, you are my hero. You have such an outlook! I hope, as I travel this journey, I can be like you. I start chem/radiation on the 23rd.

    Stay Strong! Vicki

    Newbies
    Dear Vicki:

    I am just 3 weeks out from DX. Chemo/radiation will start once a spot on my liver is biopsied tomorrow. I hope and pray it proves not involved. Good luck with your treatment. I agree that the stories of hope are helpful and needed.

    Mike
  • VickiCO
    VickiCO Member Posts: 917
    menright said:

    Newbies
    Dear Vicki:

    I am just 3 weeks out from DX. Chemo/radiation will start once a spot on my liver is biopsied tomorrow. I hope and pray it proves not involved. Good luck with your treatment. I agree that the stories of hope are helpful and needed.

    Mike

    Hi Mike
    Well Mike, it looks like we can go through this together! I get my port on Thursday, then we plan the schedule after that. I met with a surgeon today, but I didn't like his attitude too much. He was upset that I am having a second opinion tomorrow and told me that "it won't do you any good - you are looking at a colostomy in any case." Be that as it may, I am ENTITLED to another opinion. And if there is only a 1% chance, I deserve to have that chance. Whew! I didn't know just how mad I was until now!

    Send me a private message if you just want to talk.

    Vicki
  • hopefulone
    hopefulone Member Posts: 1,043 Member
    Terrific!
    Congratulations. That's wonderful news Patti. Keep the faith and God Bless
    Diane
  • msccolon
    msccolon Member Posts: 1,917 Member
    VickiCO said:

    Hi Mike
    Well Mike, it looks like we can go through this together! I get my port on Thursday, then we plan the schedule after that. I met with a surgeon today, but I didn't like his attitude too much. He was upset that I am having a second opinion tomorrow and told me that "it won't do you any good - you are looking at a colostomy in any case." Be that as it may, I am ENTITLED to another opinion. And if there is only a 1% chance, I deserve to have that chance. Whew! I didn't know just how mad I was until now!

    Send me a private message if you just want to talk.

    Vicki

    Red lights start flashing when a doctor doesn't want you to get a second opinion! If he is that insecure I would DEFINITELY find another doc! Even if the second opinion echoes what this first one has to say! You want a doc who listens to you and wants to do what's best for you, not feed his ego as to how skilled or unskilled he may be! Good luck!
    mary