For those just beginning the treatment journey

SophDan2
SophDan2 Member Posts: 150 Member
in Colorectal Cancer #1

Hi All,

When I was diagnosed with Stage 3C colon cancer back in April 2017, I found this site within the month of my first treatment. It was sooooo helpful to have this forum available to me; to be able to talk with people that truly knew what was heading my way was invaluable to me (as I had no idea what to expect). On occasion, I visit the forum, but don't always speak up. It is always sad to hear about those that have lost the battle, but it is always great to hear about the success stories, as I remember how I felt when I was going through Folfox 5FU treatment and thought "will I make it through".

I'm hear to inspire those that might be feeling the same way that I did in the beginning. Today, I met with my Onc to review my latest CT scan and blood test results. I have now been clean (NED) since November 2017.

I wish everyone the strength, will and support to fight the fight, as there can be a light at the end of the tunnel. Eat well (even if you feel that you can't), rest when you need to, I chose to use edibles instead of the prescribed anti-nausea meds (allowed me to sleep better and have an appetite), keep a sense of humor (so you can deal with people that mean well, but don't know what say), partner with the Onc, Onc nurse, Nurse Practioner and anyone else involved in your care/treatment. Remember, they're the medical team, but they learn from you as much as you learn from them.

Be well,

Barry

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited February 2020 #2
    A super early Birthday present

    I know your Birthday isn't until the 12th, but this has to be the best present you could ask for. 

    Tru

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    #3
    Im in the last sprint of the

    Im in the last sprint of the marathon here to hopefully be NED!!!  Thank you so much for your post today.  I will find out wed when adjuvant folfox will begin.

  • SophDan2
    SophDan2 Member Posts: 150 Member
    #4
    Trubrit said:

    A super early Birthday present

    I know your Birthday isn't until the 12th, but this has to be the best present you could ask for. 

    Tru

    Thank you Tru

    Thank you Tru. It is a great birthday present, thx. It was great news to share with my wife and 2 college kids!

  • SophDan2
    SophDan2 Member Posts: 150 Member
    #5
    SnapDragon2 said:

    Im in the last sprint of the

    Im in the last sprint of the marathon here to hopefully be NED!!!  Thank you so much for your post today.  I will find out wed when adjuvant folfox will begin.

    Good luck SnapDragon!

    All you have to do is cross the marathon finish line!

     

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #6
    Congratulations

    Congratulations on the latest results and thanks for the words of wisdom.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #7
    Update

    Congratulations on the good news and the update.  It's always good to see members from the board come back and give an update to how they are doing.  Happy early birthday and enjoy your day - you deserve a special day.

    Kim

  • th4rs
    th4rs Member Posts: 30 Member
    #8
    Congradulations

    I just found out in December I have Colon Cancer stage 3C.  I will do cnemo #2 on Tuesday.  I am feeling a little run down went back to work and I see how tiring that can be and trying to run a houshold.  I am so glad to hear all is well with you!!

     

    Thanks for your insperation.

     

    Robin

  • SophDan2
    SophDan2 Member Posts: 150 Member
    #9
    th4rs said:

    Congradulations

    I just found out in December I have Colon Cancer stage 3C.  I will do cnemo #2 on Tuesday.  I am feeling a little run down went back to work and I see how tiring that can be and trying to run a houshold.  I am so glad to hear all is well with you!!

     

    Thanks for your insperation.

     

    Robin

    In the earlier stages

    Hi Robin,

    During the first 4 treatments I too went back to work, but as the cumulative effects of the chemo buit up, I made the decision to focus on my health. Fortuntately I did have long term disability (no short term), so it cost me initially, but it was worth it. After the treatments were over I went back to work.

    You can only do what you can do, your body will let you know what you can do.

    Goodluck Robin, onyour remaining treatments.

    Barry

  • danker
    danker Member Posts: 1,276 Member
    #10
    NED

    Like you,I have been NED for many years(10).  Only I was 77 when dxed and soon to be 88.  Many of us are living proof that Cancer can be beat!  So just take it a day at a time and hope for the best.  Good luck to all!!!

  • th4rs
    th4rs Member Posts: 30 Member
    #11
    SophDan2 said:

    In the earlier stages

    Hi Robin,

    During the first 4 treatments I too went back to work, but as the cumulative effects of the chemo buit up, I made the decision to focus on my health. Fortuntately I did have long term disability (no short term), so it cost me initially, but it was worth it. After the treatments were over I went back to work.

    You can only do what you can do, your body will let you know what you can do.

    Goodluck Robin, onyour remaining treatments.

    Barry

    Thank YOu

    Just want to say Thakn you Barry for the encoragement.

     

    Take care and may you stay NED

     

    Robin

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    #12
    danker said:

    NED

    Like you,I have been NED for many years(10).  Only I was 77 when dxed and soon to be 88.  Many of us are living proof that Cancer can be beat!  So just take it a day at a time and hope for the best.  Good luck to all!!!

    Wow, that's awesome

    Wow, that's awesome

  • Paige1138
    Paige1138 Member Posts: 8
    edited April 2020 #13
    Newby here

    Hi I'm 38 - 39 tomorrow and I was super sick early Feb 2-5 but no GI symptoms. Ended up admitted to hospital where it was also discovered that I was anemic. They threw every test at me but could never find a diagnosis for my cardiac and breathing symptoms. My husband swears I had Covid before it got crazy here. They ended up doing a colonoscopy to find source of anemia which I found out 1 week later was cancer. Referred to Cleveland Clinic and had a partial colectomy Mar 30. I'm healing well but still not tolerating food well. My surgeon called Monday and stated good margins were found but that 5 of 22 lymph nodes were metastatic. Chemo at the beginning of next month to start. He is stating Stage 3 since it went to lymph nodes - also attached to abdominal wall that he removed. I am just getting started in this rodeo and have been trolling this site. It is excellent!! CT scans did not show any other organ involvement though nodules were noted on my lungs - they apparently only concern me not my doctor. Love hearing the success stories of course!! 

  • shu273
    shu273 Member Posts: 44 Member
    edited April 2020 #14
    Fantastic News

    That is fantastic news! Thank you for sharing and staying part of this forum!!

  • Butt
    Butt Member Posts: 352 Member
    #15

    Barry, I received close to 45 chemo treatments. I am not anywhere clise to NED. I am looking for the magic secret in how become NED...............,.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited April 2020 #16
    Wonderful

    Thank you so much for the update and glad that you are doing well. 

    Kim

  • twobeeszip
    twobeeszip Member Posts: 1
    edited April 2020 #17
    Annabelle41415 said:

    Update

    Congratulations on the good news and the update.  It's always good to see members from the board come back and give an update to how they are doing.  Happy early birthday and enjoy your day - you deserve a special day.

    Kim

    Thank you for staying on the forum for so long

    I just found this forum and your posts in a search for info on side effects of chemo. I'm a long-time survivor -- 33 years!-- of colorectal cancer, diagnosed in 1986, with surgery, radiation, chemo (pioneer treatment fior it back then). No forums back then. I have recently had not a recurrence but, big surprise, a new colon cancer, presenting with very different symptoms. Stage 2 but with a T4 tumor. Surgery in February (colostomy), and today, mid-April 2020, I started chemo with oxilyplatin. It's a different chemo than I had back in 1986 and ayy I did not expect to have such cold sensitivity and tingling!! It has been very helpful to find your post, so a big thank you.

  • jandjinco
    jandjinco Member Posts: 4
    edited April 2020 #18
    newly finished chemo, but still with side effects

    I just finished (4 weeks) ago a 6 month regimen of Folfox 5FU and still feel the side effects. I had stage 3C Colon cancer diagnosed with a second tumor in my cervical spinal cord which require a C4-7 Laminectomy  and apparently the surgeon had to play around with strands of the cord to get the entire tumor (cancerous but benign) out. I went to hospital Aug 4th last year for belly pain, had an emergency appendectomy  that night and woke up with a canc er diagnosis and a bowel resection. The tumor had not shown up on CT scan so it was a miracle that the appendectomy had compliocations and the surgeon ended up seeing the tumor and removing it. PE T scan showed 2nd tumor in spine , so another surghery on Sep 30. In hosp 14 days after this one til I could ambulate on my own. 

    Long story in between but went back to work the Monday before Thanksgiving and have been working since(  at home since the C ovid outbreak)

    I tried to start a support group at my new hometown, but nobody showed up, so here I am at my wifes insistence.

    I have some significant persistent side effects and I will try not to be too graphic:

    My fingertips are numb( you can probably see wheere I gave up retyping all the mistakes)

    I forget words and have to explain things.

    Everything that touches my bare skin feels cold.

    Legs are numb from mid-thigh down including most of my feet ( could be spinal surgery)

    It feels like a knotted rope is up my butt and wrapped around my privates and it pulls somewhere every step i take.

    I waqlk like a zombie (without arms raised) and would probably get shot if the apocolypse ever happened.

     

    I just had my post treatment CT scan and am waiting for an appointment (Covid delays) to get results.

    Can someone tell me if the side effects go away? When? Will I ever feel normal again?

     What does NED mean?

    John

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited April 2020 #19
    jandjinco said:

    newly finished chemo, but still with side effects

    I just finished (4 weeks) ago a 6 month regimen of Folfox 5FU and still feel the side effects. I had stage 3C Colon cancer diagnosed with a second tumor in my cervical spinal cord which require a C4-7 Laminectomy  and apparently the surgeon had to play around with strands of the cord to get the entire tumor (cancerous but benign) out. I went to hospital Aug 4th last year for belly pain, had an emergency appendectomy  that night and woke up with a canc er diagnosis and a bowel resection. The tumor had not shown up on CT scan so it was a miracle that the appendectomy had compliocations and the surgeon ended up seeing the tumor and removing it. PE T scan showed 2nd tumor in spine , so another surghery on Sep 30. In hosp 14 days after this one til I could ambulate on my own. 

    Long story in between but went back to work the Monday before Thanksgiving and have been working since(  at home since the C ovid outbreak)

    I tried to start a support group at my new hometown, but nobody showed up, so here I am at my wifes insistence.

    I have some significant persistent side effects and I will try not to be too graphic:

    My fingertips are numb( you can probably see wheere I gave up retyping all the mistakes)

    I forget words and have to explain things.

    Everything that touches my bare skin feels cold.

    Legs are numb from mid-thigh down including most of my feet ( could be spinal surgery)

    It feels like a knotted rope is up my butt and wrapped around my privates and it pulls somewhere every step i take.

    I waqlk like a zombie (without arms raised) and would probably get shot if the apocolypse ever happened.

     

    I just had my post treatment CT scan and am waiting for an appointment (Covid delays) to get results.

    Can someone tell me if the side effects go away? When? Will I ever feel normal again?

     What does NED mean?

    John

    Well, Hello John

    I am glad that your wife sent you here. 

    Just an idea. If you could start your very own thread, here  FORUM HOME PAGE    that way we can all reply to you directly, and your post wouldn't get lost amonst the other responses to Barry's thread.  

    NED means No Evidence of Disease.  We all want to hear those words. 

    As for long-term side effects, yes, they persist. Of course it is different for each individual, but I can tell you that I, persoanlly, still suffer from neuropathy in finger tips and legs - from the mid calf down.  Brain fog does get better, but I still loose myself in the middle of a sentence. The knot in your butt, sensation could very well get better as you continue to heal. If it doesn't, I would mention it to your surgeon.  Mine went away, and only comes back when I get myself constipated and do the old straining thing.  I have several other side effects, some from the radiation treatment. And, I am SEVEN years post treatment and SIX years NED next week. 

    Hang in there. 

    Look forward to seeing you post your own thread. 

    Tru

Discussion Boards