Progression

wawaju04976
wawaju04976 Member Posts: 316

Well I'm at my oncologist' office, right now getting my infusion. I awoke this a.m. with pain below my ribs (left side thi time). He thinks it's progression. It could be from missing treatment the weekend of my surgery, not having Avastin for almost two months, or my body building a tolerance to the chemo. I am feeling quite devastated right now. I will have a PET early next week. HIs hope is to get the Avastin back in my system and working. I had it two weeks ago. Time will tell; right now I'm a little in shock and very sad...

Judy

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Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    I'm sorry Judy, but try not

    I'm sorry Judy, but try not to panic or be sad until you really know what's going on.    I'll be thinking of you.

  • kennyt
    kennyt Member Posts: 110
    jen2012 said:

    I'm sorry Judy, but try not

    I'm sorry Judy, but try not to panic or be sad until you really know what's going on.    I'll be thinking of you.

    Fingers crossed

    I'll keep my fingers crossed for you.

  • annalexandria
    annalexandria Member Posts: 2,571
    Oh Judy...

    I so hope your doctor is wrong.  It seems like a sudden pain like that could be from something else.  Since you had surgery recently, couldn't it be possible that it's related to that, even if it is on the other side?  I know it's almost impossible, but try not to worry until you get the PET scan done.  This is the time when I would be digging into the anti-anxiety meds to help reduce the fear a little bit while you wait.

    Sending hugs and strength your way~AA

  • hippiechicks
    hippiechicks Member Posts: 509
    I agree with all of the above

    I agree with all of the above .. please try to wait for the PET results!! Could it just maybe be pain from scar tissue? I have terrible pain with scar tissue in random places in my abdomen.  I wish you the best!! Thoughts with you!

     

  • wawaju04976
    wawaju04976 Member Posts: 316
    He thinks my liver tumors

    He thinks my liver tumors have grown and they are pushing on my diaphragm. That is why I am getting this sharp pain and shortness of breath. And, my CEA was 25 :(

     

  • wawaju04976
    wawaju04976 Member Posts: 316
    jen2012 said:

    I'm sorry Judy, but try not

    I'm sorry Judy, but try not to panic or be sad until you really know what's going on.    I'll be thinking of you.

    And I can't get a PET scan

    And I can't get a PET scan until next Thursday...results Friday from his nurse practitioner, as my oncologist is going on vacation. 

  • Chelsea71
    Chelsea71 Member Posts: 1,169
    Sorry to hear this Judy.

    Sorry to hear this Judy.  Steve stopped chemo briefly and within three weeks he developed symptoms.  Alp and other liver numbers went sky high.  The liver can get out of control fast.  Hopefully now that your back on chemo things will get under control.  You also have numerous other chemo options left.  Try not to worry.  One day at a time.  Keep us posted.  Will be thinking of you.

     

    chelsea

  • wawaju04976
    wawaju04976 Member Posts: 316
    Chelsea71 said:

    Sorry to hear this Judy.

    Sorry to hear this Judy.  Steve stopped chemo briefly and within three weeks he developed symptoms.  Alp and other liver numbers went sky high.  The liver can get out of control fast.  Hopefully now that your back on chemo things will get under control.  You also have numerous other chemo options left.  Try not to worry.  One day at a time.  Keep us posted.  Will be thinking of you.

     

    chelsea

    Thank you Chelsea. The doctor

    Thank you Chelsea. The doctor is very optomistic, and actually used the word "promise" that he would get back to where we were, and beyond. He was very good, came out while Jim and I were checking out, gave me a pep talk to not give up. So, I'm gonna keep going. And try to be positive. This is Folfox weekend number 16 and it seems to be going fine. I had morphine for the pain under my ribs; it felt so good to breath deep and not have that pain!

  • Cathleen Mary
    Cathleen Mary Member Posts: 827

    Thank you Chelsea. The doctor

    Thank you Chelsea. The doctor is very optomistic, and actually used the word "promise" that he would get back to where we were, and beyond. He was very good, came out while Jim and I were checking out, gave me a pep talk to not give up. So, I'm gonna keep going. And try to be positive. This is Folfox weekend number 16 and it seems to be going fine. I had morphine for the pain under my ribs; it felt so good to breath deep and not have that pain!

    Judy,
    I am sorry that you

    Judy,

    I am sorry that you have yet one more thing to deal with....even if only the waiting. Patience was never my gift so I understand how stressful this can be. Prayers for strength and a good outcome.  Please know I, and many others, wait with you.

    Cathleen Mary

     

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Sorry

    It's so hard to be going through all you are.  I'm hoping that the new scan doesn't prove anything is there.  Glad you can get in next week, but even that seems like an eternity away.  When you have to wait, the wait is always so long.  Prayers for a good outcome.

    Kim

  • herdizziness
    herdizziness Member Posts: 3,624
    Judy

    When I was worried about being off of chemo for 4 weeks waiting for surgery my liver surgeon told me not to worry, the chemo would still be shrinking those little devils for 5 weeks, so don't blame yourself for missing a lone chemo.  It might be you're chemo isn't working anymore, I was scared when I discovered the Oxi, Xeloda, Avastin which had worked so well wasn't working anymore, but the Onc switched chemo and those suckers started shrinking right away, so please don't worry too much okay?

    But it might be just as easy as getting the avastin back in your system too.

    the wait for the scan and then the results are the hardest aren't they?  I'm so sorry you have to wait so long.  

    I'm hoping for a pulled muscle for you.  Thinking of you and fingers and toes crossed that the PET won't show progression.

    Winter Marie

  • wawaju04976
    wawaju04976 Member Posts: 316

    Judy

    When I was worried about being off of chemo for 4 weeks waiting for surgery my liver surgeon told me not to worry, the chemo would still be shrinking those little devils for 5 weeks, so don't blame yourself for missing a lone chemo.  It might be you're chemo isn't working anymore, I was scared when I discovered the Oxi, Xeloda, Avastin which had worked so well wasn't working anymore, but the Onc switched chemo and those suckers started shrinking right away, so please don't worry too much okay?

    But it might be just as easy as getting the avastin back in your system too.

    the wait for the scan and then the results are the hardest aren't they?  I'm so sorry you have to wait so long.  

    I'm hoping for a pulled muscle for you.  Thinking of you and fingers and toes crossed that the PET won't show progression.

    Winter Marie

    Thank you all!

    It's bizaare actually. I took my pain meds after supper last night. It felt so nice to be able to take deep breaths and not have any pain. That right there helped with my spirits a bit. I slept all night, woke up and still didn't have that pain. As I got moving around I started to ache, so I took pain med. I am hoping, too, Winter, that the Avastin will start kicking in (that's what my ocologist said two weeks ago-and why he didn't want to scan until after a few rounds of it; this pain, however, is resulting in an earlier scan than planned).

    I can't thank you guys enough to know what this forum has done for me. People who have gone thru the same things with same treatments, people who have other treatments that worked (I write them in my notebook so I have them handy) thank you all!

    Hugs to each and every one of you,

    Judy

  • wawaju04976
    wawaju04976 Member Posts: 316

    Judy

    When I was worried about being off of chemo for 4 weeks waiting for surgery my liver surgeon told me not to worry, the chemo would still be shrinking those little devils for 5 weeks, so don't blame yourself for missing a lone chemo.  It might be you're chemo isn't working anymore, I was scared when I discovered the Oxi, Xeloda, Avastin which had worked so well wasn't working anymore, but the Onc switched chemo and those suckers started shrinking right away, so please don't worry too much okay?

    But it might be just as easy as getting the avastin back in your system too.

    the wait for the scan and then the results are the hardest aren't they?  I'm so sorry you have to wait so long.  

    I'm hoping for a pulled muscle for you.  Thinking of you and fingers and toes crossed that the PET won't show progression.

    Winter Marie

    Guilt

    Thank you, Winter, about your comment about guilt. My colostomy reversal was elective, in that I could have kept "Oscar" for as long as I wanted, I guess. But, I would have had to wait until next summer, as recovery is quite long with the procedure. I was feeling some guilt, but not so much now.

    Thank you!!!

    Judy

  • janderson1964
    janderson1964 Member Posts: 2,215
    Dont blame yourself. You are

    Dont blame yourself. You are doing everything you can. We all have to learn to be good to ourselves. We deserve with ALL that we have to endure.

  • wawaju04976
    wawaju04976 Member Posts: 316

    Dont blame yourself. You are

    Dont blame yourself. You are doing everything you can. We all have to learn to be good to ourselves. We deserve with ALL that we have to endure.

    Thank you. I have had

    Thank you. I have had horrible pain with deep breathing. My doctor thinks liver mets had gotten bigger, so my liver is pressing on my diaphragm. Just really bummed out because I was doing so well before surgery. And I'm in panic mode because I have to start getting ready for school in a couple of weeks.

    Judy

  • Chelsea71
    Chelsea71 Member Posts: 1,169

    Thank you. I have had

    Thank you. I have had horrible pain with deep breathing. My doctor thinks liver mets had gotten bigger, so my liver is pressing on my diaphragm. Just really bummed out because I was doing so well before surgery. And I'm in panic mode because I have to start getting ready for school in a couple of weeks.

    Judy

    You still have a lot of

    You still have a lot of options Judy.  You may want to talk to a surgeon or ask your oncologist about targeting the liver directly.  It sounds like it has all been going so well (systemic chemo) that your onc didn't want to make any changes but instead continue on for as long as the chemo was doing the job.  If Folfox has stopped working, it might be a good time to discuss TACE or Theraspheres or some other form of intervention.  Then you will still have Folfiri and possibly the EGFR's for down the road.  You are in a good place in that your disease is all contained to the liver.  Sounds like you have a nice, compassionate oncologist.

     

    Chelsea

  • wawaju04976
    wawaju04976 Member Posts: 316
    Chelsea71 said:

    You still have a lot of

    You still have a lot of options Judy.  You may want to talk to a surgeon or ask your oncologist about targeting the liver directly.  It sounds like it has all been going so well (systemic chemo) that your onc didn't want to make any changes but instead continue on for as long as the chemo was doing the job.  If Folfox has stopped working, it might be a good time to discuss TACE or Theraspheres or some other form of intervention.  Then you will still have Folfiri and possibly the EGFR's for down the road.  You are in a good place in that your disease is all contained to the liver.  Sounds like you have a nice, compassionate oncologist.

     

    Chelsea

    Thanks, Chels!
     

    Thanks, Chels!

     

  • fatbob2010
    fatbob2010 Member Posts: 467
    Hang On Tight

    Hi Judy,

    Sometimes we end up just tying a knot and hanaging on for dear life. 

    You have, what seems like a care team and family that both care for you.

    New medications are being developed and the tried and true medications are being put to new use.

    Hang on tight,

    Art

  • wawaju04976
    wawaju04976 Member Posts: 316

    Hang On Tight

    Hi Judy,

    Sometimes we end up just tying a knot and hanaging on for dear life. 

    You have, what seems like a care team and family that both care for you.

    New medications are being developed and the tried and true medications are being put to new use.

    Hang on tight,

    Art

    :)
     

    :)

     

  • lp1964
    lp1964 Member Posts: 1,239 Member

    :)
     

    :)

     

    What a good-looking couple.

    What I try to keep in mind all the time that having a loving partner, friends, family and caring professionals makes it all worthwhile.

    When I was healthy, I was in a bad marriage for many years and as I remember I was lot more miserable then even though I have this terrible illness.

    Laz