Just Tuning In - Still Going ;)

NewHere
NewHere Member Posts: 1,429 Member
edited July 2023 in Colorectal Cancer #1

Like a couple of others, I am not around here as much with the new format. I take a look now and again but not do sign in often.

Anyway, still in drug trial and it is still working. No more major reductions in tumors, but basically they are all stable, with the tumors that are being monitored with slight reductions. Since I am able to breath, do not cough up blood, can exercise, I am fine with it being stable. My back pain is finally fully under control and I am reducing my pain meds by a lot.

Some numbness in front of legs, but I am trying to stretch and do others things. Considering they thought I was not going to make it through last summer (I was in REAL bad shape), no complaints from here. Try your best to stay as positive as possible, it helps and you never know what is coming down the road. I am in my 9th year and the things I have seen since my DX is impressive.

I will still check the board now and again and try to provide updates and/or add my two cents when I see posts where I think I can help out a bit.

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Comments

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #2

    Thanks for updating us and congratulations on your successes. Every day is precious.

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    #3

    Nice to hear from you again. It sounds like you’re doing much better than you were. My thoughts are with you New.

  • PamRav
    PamRav Member Posts: 348 Member
    #4

    Good to see you.

    So happy to here your trial is working . May this upcoming summer be better than the previous.

    pam

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    #5

    Good to read this update! Keep going........

  • Erica2016
    Erica2016 Member Posts: 47 Member
    #6

    Glad to here from you New I sometimes pop in here to see if you posted . I’m glad the trial is keeping you stable . You are the reason I picked up running in between chemo sessions . Be well …

  • feckcancer
    feckcancer Member Posts: 189 Member
    #7
    https://csn.cancer.org/discussion/326407/just-tuning-in-still-going

    Thank you for checking in. Fantastic news. So pleased the drug trial is working. keep doing whatever you are doing because its working! Stay well.

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #8

    Glad you're hanging in there, and it's all working in your favor, letting you do stuff, and get through all the side effects and other things. Even being NED doesn't mean the costs of living a physical work life don't accumulate with time, my mobility is taking a hit, leaving me on a kind of daily step count, which affects conditioning, etc. I'm not complaining though, I'm happy to hangout a while longer, and watch the world go by, lol. Thanks for checking in, and do keep on keeping on..........................................Dave

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #9

    Good to hear from you, New.

    I may not have messaged you, but you're always thought about.

    Here is hoping that this coming summer - may winter end soon, be a good one, and see more improvement and less pain.

    Tru

  • Helen321
    Helen321 Member Posts: 1,460 Member
    #10
    https://csn.cancer.org/discussion/326407/just-tuning-in-still-going

    Hey haven't been on in a while myself. The new format is TERRIBLE. Talk about use lr unfriendly. You can't find anyone. I'm glad to see your post!!! I'm so sorry you're in pain and dealing with so much but glad you made it over a hump. My Dr. Dr Andrea cerxek has come up with a med that got rid of rectal cancer in 18 people very quickly. Wveryone needs to google here. Shes at Sloan in NY . There is hope that a cure is coming. Too late for me since I had an APR but I wish it for all others. Love Helen

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #11

    Always good to see you, Helen. When you disappeared from my FB friends list, I was really worried.

    Tru

  • NewHere
    NewHere Member Posts: 1,429 Member
    #12
    https://csn.cancer.org/discussion/comment/1705986#Comment_1705986

    Helen

    I saw that one.

    There are so many great things happening, and happening quicker it seems. I keep on feeling that we are getting close to being the last of the generations with the harsh treatments. The trial I am in is really easy, other than being tired (though 9 years of drugs, surgery and radiation probably a good part of that) If people can do what I did - just a series of infusions to start, then one monthly, it would be great. I had reactions to the first two infusions, but after that, really nothing. I try to take some solace in all of this that being part of this trial is going to point to something that will be a big help.

    NH

  • CharlieGtx
    CharlieGtx Member Posts: 7 Member
    #13

    Thanks for your update. I'm glad to hear you are stable, but we all wish for 'cured', I hope you get there.  Are you able to share the name of the treatment you are testing? The only virus version I have been following is vaxinia cf33, they are in phase 1 trials for a year now. All the talk sounds great, but they haven't shared any actual results yet to know.


    Thanks, 

    Charlie

  • NewHere
    NewHere Member Posts: 1,429 Member
    #14
    https://csn.cancer.org/discussion/comment/1704908#Comment_1704908

    Thanks Sandia. The exercise and movement has really helped. I know you know that well.

  • NewHere
    NewHere Member Posts: 1,429 Member
    #15
    https://csn.cancer.org/discussion/comment/1704920#Comment_1704920

    Definitely improved a lot since the surgery. The last year was the toughest for sure. But pain is managed for most part.

  • NewHere
    NewHere Member Posts: 1,429 Member
    #16
    https://csn.cancer.org/discussion/comment/1704928#Comment_1704928

    So far so good for sure :). Way better

  • NewHere
    NewHere Member Posts: 1,429 Member
    #17
    https://csn.cancer.org/discussion/comment/1704937#Comment_1704937

    I am like the Ever Ready Bunny. LOL. I am stubborn for sure.

  • NewHere
    NewHere Member Posts: 1,429 Member
    #18
    https://csn.cancer.org/discussion/comment/1704941#Comment_1704941

    Keep on running. Everyone is different of course, but my doctors are convinced that it is a bit contributor to how well I am at this point, especially with the amount of cancer I have in my lungs.

  • NewHere
    NewHere Member Posts: 1,429 Member
    #19
    https://csn.cancer.org/discussion/comment/1704946#Comment_1704946

    If it ain’t broke, don’t fix it ;). I am keeping on doing what I have been as much as possible. Did 30 miles on the bike trainer, then three mile outdoor run a few days ago😀

  • NewHere
    NewHere Member Posts: 1,429 Member
    #20
    https://csn.cancer.org/discussion/comment/1704970#Comment_1704970

    All of the treatment and burden of disease, stress and the rest, even if someone is NED, builds up. I know you do everything possible with respect to staying healthy both mentally and physically. (I do need to add more stretching and strength training to what I do.)

  • NewHere
    NewHere Member Posts: 1,429 Member
    #21
    https://csn.cancer.org/discussion/comment/1705079#Comment_1705079

    So far a lot more improvement (for most part) and less pain for sure.

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