It's Back

Sandi1
Sandi1 Member Posts: 277
edited March 2014 in Colorectal Cancer #1
Well, I haven't been on here in a while, but I do check in from time to time. My husband was diagnosed in August 08, had surgery Sept. 08 and then started 6 months of aggressive chemo and was NED after aggressive chemo. He has been on maintenance chemo ever since April 09. Monday he had a PET scan and today we got the results - it seems the cancer is back, they found a tiny little spot on his liver (where he had had many before) and one on a lymph node in his groin area (where there were none before). So, I am back to feeling helpless like when he was first diagnosed. To top it off, he was in the hospital for a week last week with blood clots in his lungs - they told him he was very lucky to be alive from those. So, what do we do now? We continue to fight, we try something new. I'm just worried, because my husband said to me, so I did 6 months of maintenance chemo for what? for nothing? I promptly told him, but if you hadn't done the 6 months, we would be dealing with alot more right now.
Thanks for letting me vent! Even though I have not been on here much, I think of all of you often and include you in my prayers.
Sandi

Comments

  • sfmarie
    sfmarie Member Posts: 602
    #2
    Sandi
    I am sorry to hear that the cancer is back. It is a beastly disease. Perhaps he will respond well to other chemo cocktails or maybe even a clinical trial. Don't give up. There are many many people here who have been fighting this for years. While it is not easy, they are still here. You and your husband are in my prayers. Marie
  • Shayenne
    Shayenne Member Posts: 2,342
    #3
    sfmarie said:

    Sandi
    I am sorry to hear that the cancer is back. It is a beastly disease. Perhaps he will respond well to other chemo cocktails or maybe even a clinical trial. Don't give up. There are many many people here who have been fighting this for years. While it is not easy, they are still here. You and your husband are in my prayers. Marie

    Hi Sandi!
    It's nice to meet you! welcome back, you know there will be people here for you and hubby, when needed!

    I'm so sorry to hear his cancer is back, hopefully they can surgically remove the spot on his liver, but maintenance chemo is something that I'll probably be on till it stops working as well, though my onc told me that there are many other cocktails to use, once something isn't working, there is alot out there, so don't lose hope! Let us know what they expect to do to him, and we'll be with you all the way! You'll be in my prayers and thoughts!

    Hugsss!
    ~Donna
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #4
    Sandi
    I too am sorry it's back but I think what you said to your husband was great. He could be worse off if he hadn't do the chemo. It's good they caught it early and there are new protocols out there very often.
    Back in the saddle again...I know it's a drag to say the least.
    -phil
  • Sandi1
    Sandi1 Member Posts: 277
    #5
    Shayenne said:

    Hi Sandi!
    It's nice to meet you! welcome back, you know there will be people here for you and hubby, when needed!

    I'm so sorry to hear his cancer is back, hopefully they can surgically remove the spot on his liver, but maintenance chemo is something that I'll probably be on till it stops working as well, though my onc told me that there are many other cocktails to use, once something isn't working, there is alot out there, so don't lose hope! Let us know what they expect to do to him, and we'll be with you all the way! You'll be in my prayers and thoughts!

    Hugsss!
    ~Donna

    Thank you All
    Thank you all, I know I can always count on everyone on here to help me through this. Right now, they will be starting him on a new cocktail - CPT-11 and Exuribitux? So we will see how that goes.

    Thank you all again
    Sandi
  • Sandi1
    Sandi1 Member Posts: 277
    #6
    Sandi1 said:

    Thank you All
    Thank you all, I know I can always count on everyone on here to help me through this. Right now, they will be starting him on a new cocktail - CPT-11 and Exuribitux? So we will see how that goes.

    Thank you all again
    Sandi

    Oh I forgot
    Oh I forgot, they will be doing an MRI this Saturday to study the tumors a little more closely. That's going to be a long 45 mins and a long week until the results are back.

    Sandi
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #7
    Sandi1 said:

    Thank you All
    Thank you all, I know I can always count on everyone on here to help me through this. Right now, they will be starting him on a new cocktail - CPT-11 and Exuribitux? So we will see how that goes.

    Thank you all again
    Sandi

    I've had that cocktail
    Hi Sandi,
    I was on that combo for a few years, only this past I cut out the CPT11 and am just on Erbitux. It was effective at keeping things under control for the most part. I did develop mets to the lungs during that time but I am going under the assumption that it would have been worse. Since around January it's just been Erbitux and the 3 modes in my lungs are staying stable. The side effects were not great. There is the Erbitux rash (search our posts to see more) and the CPT11 caused some pretty bad cramping at times in me. Other people did not have the same side effects as me.
    Good luck
    -phil
  • Sandi1
    Sandi1 Member Posts: 277
    #8
    PhillieG said:

    I've had that cocktail
    Hi Sandi,
    I was on that combo for a few years, only this past I cut out the CPT11 and am just on Erbitux. It was effective at keeping things under control for the most part. I did develop mets to the lungs during that time but I am going under the assumption that it would have been worse. Since around January it's just been Erbitux and the 3 modes in my lungs are staying stable. The side effects were not great. There is the Erbitux rash (search our posts to see more) and the CPT11 caused some pretty bad cramping at times in me. Other people did not have the same side effects as me.
    Good luck
    -phil

    Yes, my husband is well
    Yes, my husband is well aware of the side effects - the oncologist made it very clear to him what they were going to be. She said, you will get a rash, and that is good because we will know that it is working. The bright side to this is, that all the tumors (40 - 50) that he had had on his lungs before chemo and the multiple tumors that were on his liver are now gone. Last CT Scan showed a very tiny spot on his liver and we are going to ask if this is the same one. And no more pump for 3 days, just 3 hours once a week at the oncologist office. Which is good, the only problem now is that when he used to have a week off between treatments, he won't have that. It will be difficult to take vacations, and we have to get my son off to college in December. The oncologist said that she will give him a "chemo break" if he really needs one, but they don't recommend it. We shall see.

    Thanks
    Sandi
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #9
    Sandi1 said:

    Yes, my husband is well
    Yes, my husband is well aware of the side effects - the oncologist made it very clear to him what they were going to be. She said, you will get a rash, and that is good because we will know that it is working. The bright side to this is, that all the tumors (40 - 50) that he had had on his lungs before chemo and the multiple tumors that were on his liver are now gone. Last CT Scan showed a very tiny spot on his liver and we are going to ask if this is the same one. And no more pump for 3 days, just 3 hours once a week at the oncologist office. Which is good, the only problem now is that when he used to have a week off between treatments, he won't have that. It will be difficult to take vacations, and we have to get my son off to college in December. The oncologist said that she will give him a "chemo break" if he really needs one, but they don't recommend it. We shall see.

    Thanks
    Sandi

    Good to Hear
    While I was on that protocol I got the CPT11 every other week and they doubled up on the Erbitux so I went only every 2 weeks. There was one point that I went for Erbitux every week and the CPT11 was still every other week. I go to SK in NYC
    Just a FYI...
    -phil
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #10
    Sorry
    So sorry to hear that the cancer is back. I hope this new cancer treatment works for him and rids him completely of all cancer.

    Kim
  • Sandi1
    Sandi1 Member Posts: 277
    #11
    PhillieG said:

    Good to Hear
    While I was on that protocol I got the CPT11 every other week and they doubled up on the Erbitux so I went only every 2 weeks. There was one point that I went for Erbitux every week and the CPT11 was still every other week. I go to SK in NYC
    Just a FYI...
    -phil

    I'm going to mention that to
    I'm going to mention that to him, maybe he could go to every other week. My husband goes to an oncologist in Toms River,NJ. We have been told by numerous people that she is the best oncologist in the area.

    Sandi
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
    #12
    Annabelle41415 said:

    Sorry
    So sorry to hear that the cancer is back. I hope this new cancer treatment works for him and rids him completely of all cancer.

    Kim

    Sorry
    That the cancer is back i hope you find the right chemo and he will be ned

    michelle
  • kristasplace
    kristasplace Member Posts: 957 Member
    #13
    No posts
    Dang it! I assumed everything was going great with you guys since you hadn't posted in a while. Seems like your last posts were good news.

    I can imagine how bad you both feel. I felt the same way after doing the six months of adjuvant chemo, for what!? As far as i'm concerned, it simply didn't work. I got a recurrence too!

    I know not every chemo works for everyone, and that they may find one that works perfectly for him. I'm just so sorry that you're having to go through all this again.

    Keep us posted on his treatents, and talk to Eric about the liver zapper thingy they're doing. i can't remember what it's called...RAF maybe? He swears it works well.

    Many hugs,
    Krista
  • Sandi1
    Sandi1 Member Posts: 277
    #14
    kristasplace said:

    No posts
    Dang it! I assumed everything was going great with you guys since you hadn't posted in a while. Seems like your last posts were good news.

    I can imagine how bad you both feel. I felt the same way after doing the six months of adjuvant chemo, for what!? As far as i'm concerned, it simply didn't work. I got a recurrence too!

    I know not every chemo works for everyone, and that they may find one that works perfectly for him. I'm just so sorry that you're having to go through all this again.

    Keep us posted on his treatents, and talk to Eric about the liver zapper thingy they're doing. i can't remember what it's called...RAF maybe? He swears it works well.

    Many hugs,
    Krista

    I will talk to him - we will
    I will talk to him - we will get through this, just like before. My husband isn't giving up and neither am I !!! We will beat this once again.

    thanks
    Sandi
  • Julie 44
    Julie 44 Member Posts: 476 Member
    #15
    Sandi1 said:

    I will talk to him - we will
    I will talk to him - we will get through this, just like before. My husband isn't giving up and neither am I !!! We will beat this once again.

    thanks
    Sandi

    Hang in there
    Hey Sandi,
    I can only imagine how hard this is on both of you that it came back. Just keep the communcation open between you both and you will get through this also....Good luck and my prayers are with you...JULIE
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #16
    Sandi
    Sandi,
    I am so sorry to hear that the cancer popped back up. It sounds like you have a plan to go at it again.

    Thinking of you and saying a prayer.

    Aloha,
    Kathleen
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #17
    Sorry
    Hi, Sandi.

    I'm sure it was devastating to get that news, but I hope things will look up soon. You'll both be in my prayers.

    *hugs*
    Gail
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #18
    So sorry to hear the cancer
    So sorry to hear the cancer has popped back up again. Hopefully the switch to a new cocktail will give him something that works better now for him than the maintenance chemo - but you still have to know that he'd most likely be worse off right now had he not down the maintenance.

    Good luck to you both. Please let us know how the tests go and how the new cocktail goes.
  • dorookie
    dorookie Member Posts: 1,731 Member
    #19
    Just when you think
    its okay to be normal again it pops up, thats what happened to me last year too. So I had to go through another surgery and months of Chemo, but at last I am NED again and so will your husband. I knowit sucks there is just no other word for it, but you two will get through this and get better. Just be there for each other and continue to pray, I will be praying for you too. Good luck and please let us know if we can be of any help.

    God Bless
    Beth
  • Sandi1
    Sandi1 Member Posts: 277
    #20
    PhillieG said:

    I've had that cocktail
    Hi Sandi,
    I was on that combo for a few years, only this past I cut out the CPT11 and am just on Erbitux. It was effective at keeping things under control for the most part. I did develop mets to the lungs during that time but I am going under the assumption that it would have been worse. Since around January it's just been Erbitux and the 3 modes in my lungs are staying stable. The side effects were not great. There is the Erbitux rash (search our posts to see more) and the CPT11 caused some pretty bad cramping at times in me. Other people did not have the same side effects as me.
    Good luck
    -phil

    Hair
    Phil,

    When you were on that cocktail, did your hair thin out or did you lose your hair? That seems to be the one thing my husband is worried about. His hair thinned out before, and it has just recently grown back.

    Sandi

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