Hubby's CT scan results, good news???

Daisylin
Daisylin Member Posts: 365
in Esophageal Cancer #1
My husband (stage IVb, mets to the liver) received his CT scan results today, and the news was somewhat positive, but has left us with unanswered questions. This was his first scan after 4 sessions with the 'big cannons'

I have, of course read on this site about the big cannons, and the debate of how much is too much, but how do you make that decision? The tumours in both his esophagus and liver have shrunk. The doc was unable to tell us how much shrinkage, but he seemed pleased with the results. They have by no means vanished, they are still there, only smaller.

He offered 2 choices..... either face another round of chemo, or take a break for a few months and then do another CT and go from there. There was no offer of a 'compromise' approach, and honestly we didn't think to ask at the time. Your brain seems to turn to mush when you step in the doors of the cancer centre. I realize the dangers of too much chemo, but on the other hand, won't the tumours just keep growing with no chemo? He was strongly suggesting taking the chemo holiday, which I understand the reasons for. We just don't want to go back in 3 months and hear that the tumours have grown or spread.

Also, we asked about the HER2 therapy and he thought that would be a good avenue to go down, however, the Canadian medical system does not cover the drug needed, so we need to find out if his work health insurance will cover it. Fingers crossed!

We were supposed to meet with the radiation oncologist today as well to discuss radiation, but we were told that he's still not a candidate for that. We also asked about the therasphere treatment, but he said that that's only for primary liver cancer.... not really what I've heard from here, but again, mushy brain syndrome kicked in. (maybe that's a Canadian OHIP regulation)

We would really appreciate any advice you can give us..... do we take the holiday? do the chemo? go back and ask about a compromise, as several of the others here have done?

Thanks,
Chantal

Comments

  • Callaloo
    Callaloo Member Posts: 135
    #2
    Good news!
    Shrinking tumors is always good news. It means your husband responded to the chemo. Whether to continue with another round depends on so many variables. How has he tolerated the chemo so far? What about his blood work, white and red blood cell counts, kidney function, liver enzymes, etc., i.e., how is his body tolerating the chemo? What was he on and in what doses? Does he want to do another round?

    I read your profile but didn't see any details about the chemo cocktail your husband had. Some regimens, ECF for example, are often taken for up to 8 cycles, so one more round doesn't seem unreasonable if it's well-tolerated, especially if it's working. Others are more toxic, so tell us more.

    Obviously, no one on this board can advise you on what to do, but if we knew more, we could suggest questions for you to ask of your doctor that might help in reaching an informed decision.

    Also, have you considered a second opinion? I found it helpful in making these tough decisions to consult another doctor. It may or may not give you more options, but it gave me more information, and more confidence in the decision-making process.

    Lu
  • Kenem
    Kenem Member Posts: 21
    #3
    Theraspheres
    I also have EC, stage IV with mets to the liver. My understanding of the Theraspheres program is that Theraspheres are allowed if the liver is the only cancer site and the liver is not too badly damaged. For me, chemotherapy knocked out the EC - nothing but dead cancer cells after an endoscopy biopsy. Thus Cleveland Clinic allowed me access to the Theraspheres program. I still have to wait about two (2) months to see if the Theraspheres worked.
  • Unknown
    Unknown
    #4
    Kenem said:

    Theraspheres
    I also have EC, stage IV with mets to the liver. My understanding of the Theraspheres program is that Theraspheres are allowed if the liver is the only cancer site and the liver is not too badly damaged. For me, chemotherapy knocked out the EC - nothing but dead cancer cells after an endoscopy biopsy. Thus Cleveland Clinic allowed me access to the Theraspheres program. I still have to wait about two (2) months to see if the Theraspheres worked.

    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #5
    Kenem said:

    Theraspheres
    I also have EC, stage IV with mets to the liver. My understanding of the Theraspheres program is that Theraspheres are allowed if the liver is the only cancer site and the liver is not too badly damaged. For me, chemotherapy knocked out the EC - nothing but dead cancer cells after an endoscopy biopsy. Thus Cleveland Clinic allowed me access to the Theraspheres program. I still have to wait about two (2) months to see if the Theraspheres worked.

    This comment has been removed by the Moderator
  • Daisylin
    Daisylin Member Posts: 365
    #6
    unknown said:

    This comment has been removed by the Moderator

    clarification
    I will try to be a bit more thorough in my description Lu, Lee was diagnosed January 2011 with stage ivb, with mets to the liver. (about 15 tumours found in the liver) He was obviously not a surgical candidate, and the radiation doctor was not willing to do any treatments either.

    He began treatment this past February and has now undergone 4 rounds of chemotherapy. His treatment involved iv cisplatin and epirubicin followed by 2 weeks capecitabine (xeloda) orally, repeated every 3 weeks. I am unsure of the dosages, but he was started on the maximum and after horrific side effects during the first 3 weeks, the doctor dropped the amounts by about 15%. He was vomiting and nauseated constantly, could not even stand the sight or smell of food and just felt downright awful all the time.

    He lost some weight during the first few weeks, probably around 8-10 pounds, but in the remaining weeks he maintained a very good appetite, and gained it all back. The side effects were moderate, but manageable. He had hair loss, constipation, extreme fatigue, leaky eyes, hand and foot syndrome (mostly feet, but managed with lotions) mild nausea and dry mouth. He was prescribed various anti nausea medications and they seemed to help, as long as he took them in advance.

    The blood work has been good in almost all areas, but he was low in magnesium, which he has been taking supplements for. He was also low in potassium on one test several weeks ago, but it was not mentioned since, so I assume he is ok there. Blood cell counts were lower than normal, but above average for chemo.

    He has been on his ‘chemo holiday’ for a month now, and suffers only from mild fatigue. His first reaction was to want to keep going with the chemo, and ‘blast those suckers’, but the doctor explained the risk of becoming immune to the drugs, as well as weakening all the other healthy cells in the body. I can certainly see both sides of this coin. I’ve read so much here about too much chemo, but is 2 rounds ‘too much’? Part of us is thinking, well, if we shrunk them a bit, won’t more chemo shrink them even more? And if so, wouldn’t that be fantastic? On the flip side of course, what if we do more chemo, and he becomes weaker, and his levels drop? What a mind blowing decision to have to make!

    William, thanks again for the links for Therasphere, I read them all and more when you sent them to me last time. Sherri, I don’t know if we can do anything without a referral, certainly worth looking into though. I think if we pushed hard enough, our doctor would refer us. When we were there yesterday we were so baffled by the overwhelming mountain of a decision, we were not really thinking clearly, and did not really push the issue. Also, the radiation oncologist appointment was cancelled, since Lee is still not a candidate. He probably would have been the better choice to ask about it.

    Again, we welcome any advice, I know no one can make this decision for us, but we are stumped!
    Thanks,
    Chantal
  • Unknown
    Unknown
    #7
    Daisylin said:

    clarification
    I will try to be a bit more thorough in my description Lu, Lee was diagnosed January 2011 with stage ivb, with mets to the liver. (about 15 tumours found in the liver) He was obviously not a surgical candidate, and the radiation doctor was not willing to do any treatments either.

    He began treatment this past February and has now undergone 4 rounds of chemotherapy. His treatment involved iv cisplatin and epirubicin followed by 2 weeks capecitabine (xeloda) orally, repeated every 3 weeks. I am unsure of the dosages, but he was started on the maximum and after horrific side effects during the first 3 weeks, the doctor dropped the amounts by about 15%. He was vomiting and nauseated constantly, could not even stand the sight or smell of food and just felt downright awful all the time.

    He lost some weight during the first few weeks, probably around 8-10 pounds, but in the remaining weeks he maintained a very good appetite, and gained it all back. The side effects were moderate, but manageable. He had hair loss, constipation, extreme fatigue, leaky eyes, hand and foot syndrome (mostly feet, but managed with lotions) mild nausea and dry mouth. He was prescribed various anti nausea medications and they seemed to help, as long as he took them in advance.

    The blood work has been good in almost all areas, but he was low in magnesium, which he has been taking supplements for. He was also low in potassium on one test several weeks ago, but it was not mentioned since, so I assume he is ok there. Blood cell counts were lower than normal, but above average for chemo.

    He has been on his ‘chemo holiday’ for a month now, and suffers only from mild fatigue. His first reaction was to want to keep going with the chemo, and ‘blast those suckers’, but the doctor explained the risk of becoming immune to the drugs, as well as weakening all the other healthy cells in the body. I can certainly see both sides of this coin. I’ve read so much here about too much chemo, but is 2 rounds ‘too much’? Part of us is thinking, well, if we shrunk them a bit, won’t more chemo shrink them even more? And if so, wouldn’t that be fantastic? On the flip side of course, what if we do more chemo, and he becomes weaker, and his levels drop? What a mind blowing decision to have to make!

    William, thanks again for the links for Therasphere, I read them all and more when you sent them to me last time. Sherri, I don’t know if we can do anything without a referral, certainly worth looking into though. I think if we pushed hard enough, our doctor would refer us. When we were there yesterday we were so baffled by the overwhelming mountain of a decision, we were not really thinking clearly, and did not really push the issue. Also, the radiation oncologist appointment was cancelled, since Lee is still not a candidate. He probably would have been the better choice to ask about it.

    Again, we welcome any advice, I know no one can make this decision for us, but we are stumped!
    Thanks,
    Chantal

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