Good times, Bad times

Steve444 Member Posts: 105 Member

I haven't been posting much, but catch up on new posts daily.  I don't like to speak out when I don't have much good to say, but I guess I feel the need to whine.  

It feels like a blur since being diagnosed in early 2014.  Last year chemo did me well.  I had a total response and was NED for the last part of the year, I kept in high spirits and was able to joke a lot.  This year since my recurrence I find myself miserable and not doing so well through treatment.  We tolerate some treatments better than others and each respond differently.

Tumors grew back in my liver, found in a PET scan after my CEA rose from 1.2 to 3.  My CEA has never been really high.  At first it looked like 3 small sub-centimeter lesions, then 5.  I opted for SIRT, and by the time the first phase 2 procedure took place in June there were 10 tumors across both lobes.  The first half responded well, the second half had some response but there are now a dozen tumors that didn't get hit.  Yeah, the numbers keep growing.  On Monday I have my 9th stab in the groin and 3rd blast of y-90 spheres in hopes of killing off the rest of them.

I've always been really sensitive to chemicals, hell, I get high from a flu shot.  The sphere treatments knock me on my butt for a good 8 weeks.  The first four weeks I'm filled with pain in my chest, abdomen and back.  The next four weeks the pain is minimal, but I still feel lethargic and am in bed 90% of the time for the entire two months following the procedure.  After the first round, I seriously questioned going through it again.  Now I'm really not looking forward to the next month.  At least this time we're going in with a pain management plan.  The last time around I tried Oxycodone without Tylenol, and it shut my system down.  I couldn't even urinate, so I had to stop and just deal with the pain.  It's fun playing musical drugs to find something tolerable that alleviates pain.

On top of the liver issues, I've been having problems in the rectal area again (my source tumor site).  Stabbing pain daily, the urgent need to go to the bathroom every hour with little output, etc...  I was finally able to get in for a scope a few days ago where they found two active tumors sitting really low causing me problems.  These didn't show up on CT or PET scans.  I'm on my second round of Vectibix for that (started early as we were pretty suspect of symtoms) and I'm not so much enjoying the acne rash that has developed on my nose and chest, arms and back.  I'm taking Doxycycline and 1% steroid cream has done well for my nose at least.

I've pretty much been in bed since the end of June and have lost another 25 pounds since coming back from vacation in Mexico at the end of May.  I guess a plus is almost being back to my high school weight, though my wife doesn't seem amused.

I'm about done complaining.  Hopefully I'll feel better by Thanksgiving and be in a better place mentally next year.  I wish all of you well, and I'm sure I'll be back to joking and posting soon.


  • NewHere
    NewHere Member Posts: 1,427 Member
    Ah man

    So sorry to hear about all the things you are going through and looking forward to hearing that you are feeling well quickly.  (And no, you are not whining or complaining in my book at all.) 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    I'm so sorry you're going

    I'm so sorry you're going through all of that. The side effects can be worse than the treatments themselves. And you're not whining. We all have times where we just have had enough of keeping a stiff upper lip and need to unburden ourselves with the emotions. And who better than to people who really do 'get it'. Our supportes in life can only sympathize so much, they cannot really understand the emotions and pain we go through. My husband and I were discussing the feelings yesterday and he was surprised when I told him that I feel like a failure when I have bad news for him and my daughter. Like I've let them down somehow. He said he knows it's not my fault and I know it isn't, either, but for some reason that's how I feel. We all have to go through so many emotions and thoughts and it's never ending. It sucks to be us.

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    You are allowed to complain

    You have all the reason in the world to whine and complain. You are not having a very good ride, that is for sure. 

    It is easy to be positive the first go around, but when there is a reccurance, it hits you hard, and it is not so easy to be bouncy and positive. I remember feeling like I was literally gutted. Like I had no insides, just a hollow, painful area. I felt like a Zombie for a while. No emotion. 

    I am so very sorry to hear that you are struggling, and pray you can find your happy place as you battle on. It doesn't help when you can't tolerate medicatoins, especially as your life is going to be pretty much filled with them from now on. 

    You come here and whine all you want. You know you have our support, and our deepest sypathies for what you are going through. 

    I am wishing all the best. 

    Sue - Trubrit

  • vtspa6
    vtspa6 Member Posts: 172
    Sorry to hear this, I am

    Sorry to hear this, I am thinking you have the right to whine.  Heck, I would be screaming!  Please keep us updated and will be thinking of you and your family. 

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    vtspa6 said:

    Sorry to hear this, I am

    Sorry to hear this, I am thinking you have the right to whine.  Heck, I would be screaming!  Please keep us updated and will be thinking of you and your family. 

    Whining is allowed here,

    Whining is allowed here, we're certainly entitled to express what we feel. The one good thing to happen these last 8 years for me, was dropping 40 pounds, and holding at 195. Now I look at old pix and think "damn I was getting fat". The other thing is thinking much more about what and how much I'm eating. Had I not received the diagnosis, I wonder if I would have made any changes. Doesn't make up for all the crap I've been through, but it's something.    Dave