JohnSFO Update

AceSFO
AceSFO Member Posts: 229
edited March 2014 in Colorectal Cancer #1
We haven't been posting much on the board lately and so I thought it time to give an update and explanation. Unfortunately, 2010 isn't really off to a good start for us either. By tomorrow, Friday, 1/22, John will have had 15 appointments or procedures so far this month, including one trip to the ER while we were traveling. The tumor is growing and the pain increases every day. We've already tripled his pain meds and they're still not enough. Today he's meeting with the Stanford Pain Clinic and we're hoping that they'll have some viable suggestions for pain management. He has a very high threshold for pain, and is already taking Fentanyl (time-release patches) MS Contin and Dilaudid, and is still in more pain than he can handle.

On Monday 1/25 he'll start his third round of chemo (Irintecan + 5FU) and we'll see how it goes. He did the Irinotecan back in September and it made him awfully sick - he was laid flat for 10 days after the first infusion - so we're a bit apprehensive about trying that again, but they're going to administer it in a different way and at a much lower dose this time, so hopefully that will make it more tolerable.

I've been going with him to most of these appointments. Being self-employed, I can, but I also don't get paid when I don't work, so when we're not doing that, I'm trying to make up for lost time at work and we just haven't had much time to spend on here lately. I'll try to do better at balancing - it's good to feel connected with all of you and share in the collective joys and sorrows.

And, just to end on a bright note, I had my first colonoscopy (age 45 - family history) in early January, and it came back with great results - a very healthy colon - not even a single polyp! So that was a relief.

Thanks to each of you for being here - whether you respond or just scan the postings - it all contributes to the overall good feeling on this board.

lots of love,
Adrian
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Comments

  • robinvan
    robinvan Member Posts: 1,012
    Thanks Adrian
    I hope he tolerates the irinotecan. It wiped me out in November.

    Glad to hear your colon is clear!

    Be well... Rob; in Vancouver

    “Life is short,and we do not have much time to gladden the hearts of those who travel the way with us. So let us be swift to love, and let us make haste to show kindness.”
    Henri Amiel
  • maglets
    maglets Member Posts: 2,576 Member
    Adrian
    How lovely to see you and congrats on your good colon news! hooray!

    not so much ease for John however. Adrian i am so happy you are able to be with him for all those appointments. I know how much that support can help to ease jitters and just plain fear. Gosh I hope you can get some meds that work for pain and I hope so much that a better solution can be found for the delivery of John's chemo.

    holding both of your hands very tightly,

    mags
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Just want to say good luck
    Just want to say good luck to John with the chemo and hopefully this time the side effects will be very minimal.Take care.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    praying
    Hi Adrian,

    I will be praying that John can tolerate the chemo this time and that it will shrink the tumors. Have you and John ever considered going to see Dr. Cantrell in Nashville? I just spoke to Pat (kapper) and he called Dr. Cantrell today and will be going to see him soon. Just something to consider if the chemo doesn't work (but I'm praying that it will).

    Glad to hear your good news after your colonoscopy!

    Take care,
    Lisa
  • KathiM
    KathiM Member Posts: 8,028 Member
    Aw, lieverd...
    Ik heb mijn arms om jij!

    Well, one anyway...the other is in a cast...loooooong story...lol!

    I am sending healthy, strong vibes to John...I HATE to hear that he is struggling!!!

    Beste van Nederlands....

    Hugs, Kathi
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Appointments
    So sorry to hear of his news and so many appointments and that he is still in so much pain. That has to be very hard on him and you as a caregiver. Thinking and praying for you both. Glad that your colonoscopy came out great.

    Kim
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Thanks for giving us this
    Thanks for giving us this update. I am so sorry that John is in pain & has had so many procedures in 2010. I give you both credit for travelling despite all this. I hope the irenotecan goes better this time. I have had 8 treatments of folfiri & avastin, & have had success with shrinkag so far - I wish the same for John. It is great to heat you had the colonoscopy & your results were good! Best wishes to both of you!
  • geotina
    geotina Member Posts: 2,111 Member
    Adrian
    I am so sorry John is in so much pain. As a caregiver, it is so difficult to watch someone we care about deeply be in pain. I know if we could just take some of that pain away and put on ourselves we would all line up for a shot at that. During this difficult time, please remember to take care of yourself. Take care my friend - Tina
  • geotina said:

    Adrian
    I am so sorry John is in so much pain. As a caregiver, it is so difficult to watch someone we care about deeply be in pain. I know if we could just take some of that pain away and put on ourselves we would all line up for a shot at that. During this difficult time, please remember to take care of yourself. Take care my friend - Tina

    This comment has been removed by the Moderator
  • Patteee
    Patteee Member Posts: 945
    what makes me the saddest
    what makes me the saddest from your post is the pain John is in! I hope the pain clinic can help get him on the right combination and frequency to get that down!
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Adrian
    Adrian,
    Thanks for the update. I pray they can get John's pain under control. I know it is so hard to watch someone you love suffer. I hope he can get comfortable.

    So glad to hear about your clean colonoscopy... that is great news.

    Best to both of you.

    Aloha,
    Kathleen
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    Adrian
    I am praying that you are able to get John's pain under control and I am thankful that you had a clean colonscopy.

    Best regards,
    Amy
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    Tell John I send my best!!
    Hi Adrian, That's too bad about Johns pain. Ask the pain doctor about a pain pump. It's a small pump they insert under the skin and pumps pain meds into him. It requires less pain meds so he wont be out of it! I think of you guys often and hope everything works out. But they really need to get the pain under control. Being in pain is the worse!!


    Life is funny sometimes

    Brooks
  • TLG320
    TLG320 Member Posts: 167
    Sorry to hear this
    You are both in my prayers. Warm thoughts and best wishes for comfort,
    Tashina
  • snommintj
    snommintj Member Posts: 601
    TLG320 said:

    Sorry to hear this
    You are both in my prayers. Warm thoughts and best wishes for comfort,
    Tashina

    strength
    I hope John finds the strength to endure the pain, I hope he finds a treatment that will alleviate his suffering, I hope that you find he strength to handle the adversity you must encounter and I hope your business prospers so that you can work less and earn more.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Praying for John
    Adrian,

    I'm so glad you had a clear colonoscopy! Good for you! But I'm so sorry about John's pain. Please let him know that I'm praying he will have some relief.

    *hugs*
    Gail
  • lesvanb
    lesvanb Member Posts: 905
    Love to you and John
    I sure hope John finds some relief for his pain level. Take care you two.

    Love, Leslie
  • JDuke
    JDuke Member Posts: 438
    lesvanb said:

    Love to you and John
    I sure hope John finds some relief for his pain level. Take care you two.

    Love, Leslie

    Adrian
    So sorry to hear that John is suffering so. I know this is hard for you to see. I hope that they will be able to make his pain manageable and that the rest of 2010 is brighter than it has started. Woohoo on the clear colonoscopy, great news.
    Blessings,
    Joanne
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    Happy for your results
    I'm so glad to hear you got your scope and it was clean!

    Sorry John is having such a tough time. I hope the change in treatment will bring good results, and they find something that works to control his pain.

    I can completely understand the time constraints, and financial woes of self-employment. I'm in the same boat. Hang in there - do what you can - prioritize what YOU feel is most important, and then try not to stress about the rest that you can't get to.
  • AceSFO
    AceSFO Member Posts: 229
    Thanks to each of you
    for all your wonderful responses - it feels so good to know that you guys are all thinking about us and sending good thoughts.

    Yesterday we learned that he has a new tumor in the rectum, fairly small, about 2 cm, but it wasn't there in October. Because of tissue damage from radiation there's really nothing to do for it except hope that the chemo will shrink it.

    I feel like I'm in a car with no brakes and picking up speed fast.