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    JulieBair shared an experience

    Decision Point

  • JulieBair's Avatar

    JulieBair shared an experience

    Decision Point (to continue palliative chemotherapy or.....not. ): My husband has been having palliative chemo for 18 months for Stage 4 colon cancer. His cancerous tumors had metastasized to virtually every space in his torso but there are no tumors inside any organs (as far as we know) except the primary which is in his sigmoid colon. It is apparent that "something" is going on. His stomach is distended and we can feel the lumpy tumors inside. However, the large, aggressive tumor that was in a lymph node just beneath the collar bone has not returned. We were told that would be our "barometer" to measure whether or not the cancer is growing. He is tired of the chemo therapy and has not received it for a few weeks as prescribed (every two weeks for the rest of his life). He is thinking of discontinuing chemo all together. He feels better without the chemo and is able to have a somewhat "normal" life. We are both wondering if stopping the chemo completely will allow the cancer to flare up again. If so, how soon? Will continuing chemo prevent it from flaring up? If so, for how long? We agree that quality of life takes precedence over quantity. His doctor is not very good about answering our quesitons and we feel like we have been on this journey alone since returning home from a successful clinical trial at Penn Medicine in Philadelphia to attend the local cancer center. He could receive the same drugs here that were prescribed and successful is shrinking his tumors in Philly. Does anyone have any input for us? He has had attacks of horrible, gripping pain around his mid section (which is packed with tumors). He wretches horribly for about an hour every morning and has to go to the bathroom six or seven times early in the day. He also appears bloated around his face as well as abdomen. When we go to his doctor appointments we are told "nothing has changed". The doc takes his vitals, listens to his heart and that's it! We have asked the "what next?" question so many times. The doc shrugs and says, "I don't know. You have already defied the odds." We try to live every day that God gives us and be grateful for it but it's hard to be constantly waiting for the "other shoe to drop". What next?

    1 Comment
    • anndotcom's Avatar
      anndotcom

      Hi JulieBair,

      I'm so sorry to hear about your situation. I am so new at this (my husband was diagnosed stage 4 esophageal cancer on 8/15/15). I do think though, that the goal of chemo (palliative) is to stop it growing, and hopefully shrink it, so stopping the chemo would allow it to continue growing. How fast? I don't think anyone knows that. My husband also has attacks of horrible pain in his mid-section, and our oncologist didn't really know what to make of it. Does anything work for your husband when he has this? My husband had one very bad episode after his chemo, and now he feels like it sometimes is going to start again, but it just radiates across his mid-section then stops. It seems to help if he lays flat on the floor, on his stomach. So we use that as a plan......towel for under his face when he is lying there......

      It is a very difficult decision to make........continue chemo or stop......do you have a social worker on your oncology team that you can talk to?

      over 5 years ago
  • JulieBair's Avatar

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  • JulieBair's Avatar

    JulieBair posted an update

    I haven't posted in a while now. Been so bummed out and depressed it's hard to put one foot in front of the other some days. When my husband was diagnosed initially in March we were so sure we would find the right place to go for his treatment and he would be cured of Stage IV colon cancer. I mean, he did not have any symptoms at all. He looked healthy and felt well. How could he be seriously ill? The MRI revealed tumors from his carotid arteries all the way down to his pelvis. They are all through his pleural space, on his larynx, in the retrocrural space behind his heart, strangling the entire length of his aorta and aortic valve. The primary is in his sigmoid colon. We have been going for his chemo for three days out of every two weeks. One day in the clinic followed by two days wearing the pump. I learned to take it off at home. Now we know he will do this treatment every two weeks for the rest of his life or until it doesn't shrink the tumors (doesn't work) anymore. There will be no surgery and no radiation for him. The treatment is strictly palliative. It will hopefully prolong his life and give him quality of life but for how long? We don't know. No one knows. Or, if they know, they aren't telling us. He got his affairs in order. We have been having fun doing things we talked about doing but had not done yet. After each chemo treatment he gets a little sicker. A bit more tired. Less energy. Hands and feet are cold. Lips are numb. His gums bleed. So, my question is, what next? How long are we going to be doing this? His immune system is getting weaker. Is he going to get an infection and die from that? Or, will the chemo stop working and he will die from a ruptured carotid artery? It's making me crazy, this cancer thing. I want to know what is going to happen to him, to us and when! Yes, I know he is going to die of cancer (unless something else gets him first) but HOW do people die from cancer? Is it fast, or slow? Is it the eventual side effects of chemo that does a person in or, if he were to stop having chemo, would he die of the cancer. And HOW? I'm sorry if I sound so negative. We just have so many questions and NO answers. We feel like sheep, blindly following instructions, going for chemo and we don't even know if we should be doing that or not.

    5 Comments
    • JulieBair's Avatar
      JulieBair

      Thank you both for your kind and CALM replies. I guess I was venting my anger and frustration with this whole thing. My husband is only 53 and continues to go to work every day. He doesn't have a lot of the side effects many people suffer with. Just those I mentioned above. I notice that the number of hours he spends working are getting less and less. He certainly sleeps more. At first we joined a clinical trial at Penn Med in Philadelphia. They studied the mutations of his particular colon cancer and only gave him the drugs they knew would work for him plus the trial drug, HCQ (quinine). After eight treatments and a positive CT scan showed the tumors were shrinking a little we moved to Roswell in Buffalo which is so much closer. Penn was a day's drive down there, three days of treatment and a day's drive home. They got him on track with meds and chemo, etc. and then transferred everything so he could get the same treatment in Buffalo. I have asked all the questions in both places and it seems the doctors are just as puzzled as we are with this "thing". They keep asking him if he has pain in his back. Negative. Is he short of breath? No. At first they gave me a print out on carotid artery blow out syndrome. That indicates that the tumor on the carotid artery would be under pressure from the tumors around his aorta. At some point the carotid tumor could cause the artery to burst and he would bleed out in a minute or less. That had me nearly insane with worry. The tumors were growing so fast I wasn't sure we would make it to the first chemo treatment on April 23. That tumor (on the carotid) has shrunk to almost nothing now so maybe the possibility of a blow out is lessened. The tumors around his chest, heart and aorta have shrunk a little bit but not a lot. At least they aren't growing like they were! From the very first visit they told me to go ahead and get him on Hospice right away so there would be a smooth transition when the time came. Well, he is still working and has no need for hospice (five months later). He still has no pain and no side effects other than the minor ones I mentioned earlier. He goes to work every day as a brick and stone mason! I know I should be grateful and positive and I try to be. Certainly I am grateful. We both try to live each day that God gives us to the best of our ability. It's just hard not to be always waiting for the other shoe to drop. Thanks for letting me vent. I am better today and will try to stay that way. Wishing all of you the best.

      almost 7 years ago
    • GregP_WN's Avatar
      GregP_WN

      One thing I have experienced myself and seen with my family is that once you stop doing things on a daily basis and more or less just sit down and stop moving, you go down hill fast. The longer he can safely work the better, it's good for him, even if he gets to the point that he can only do half of what he used to, if he can still do that I would encourage it. I hope the tumors continue to shrink, or don't get any larger at least. We have lots of people on the site that live with tumors everyday and will for the rest of their lives. It's doable! Best to you both!

      almost 7 years ago
    • JulieBair's Avatar
      JulieBair

      Thanks, Greg, that is very encouraging. He does about half of what he normally did previously. It's also good to know there are other people who live with tumors. No one has said how long the chemo will keep shrinking the tumors. I don't think anyone knows. But it is good to know that it's do-able and other people live with chemo for the rest of their lives. No one knows how long that will be at the best of times

      almost 7 years ago
  • JulieBair's Avatar

    JulieBair shared an experience

    Decision Point (Need insight and answers. ): my fiance was diagnosed with stage four colon cancer in April. It has metastasixed to include his larynx, carotid arteries, the pleural space around his lungs, the retrocrural space around his heart, it encompasses his aorta to his groin and pretty much every place it can in his body cavity. It has metstasized to his lungs, liver, spleen, blle ducts or pancreas as yet. He is on Palliative chemo therapty every two weeks for three days. HE has virtually no pain and very little discomfort. Has not felt much effect of side effects from the chemo. Yes, his treatment is palliative, meant only to keep him comfortable, preserve his quality of life and prolong his life as long as he is comfortable. My question is this: I don't know what to expect to happen. He is terrible about not following the rules of protecting himself from germs and his platelets are low. He has pain in his chest occasionally. HIs temp spike to 101 to 102 off and on. His heart races upwards of 120 bpm. The chemo seems to be eeping the tumors from spreading and has even shrun them some. What should we expect to happen next? This is all so surreal to us, expecially since he feels O>K> for the most part. Doctors seem surprised every time we go in because he has no pain, as would be expected with the size ad location of his tumors and very few side effects. HOw does this disease work? Will I just wake up one day and find him dead? Will he get sick from infection? Or will the cancer crowd his heart ad aorta causing a heart attack of burst artery?

    9 Comments
    • JulieBair's Avatar
      JulieBair

      I am so sorry. Mine has been fighting hard for 18 months on palliative chemo. He stopped the chemo this summer because he just wanted to enjoy life and not be tied to the pump and feeling sick and tired. Now, I fear the cancer is in his bones and brain but he doesn't want to have it confirmed or denied. His wrists and hands are swollen and extremely painful. He is sure they are broken but won't go to get an exray. The tumors in his abdomen are huge. He looks pregnant and the masses are palpable. He has night sweats and fevers. Does and says some bizarre things. I'm afraid he doesn't want to try anymore. Just let the cancer take it's course. He frequently says things like, "That's it. I know I'm done. I'm in trouble and there is nothing anyone can do about it. I will just go to sleep." The "what next" is making me so worried but I try to live one day at a time. He had a terrible pain around his chest last week. Almost let me call 911 but it subsided enough that he cancelled the call. The next day the pain was in his shoulder and arm. Now in his wrist and hands. Constant headache now and very, very tired.

      over 5 years ago
    • NanaL's Avatar
      NanaL

      JulieBair, I'm so sorry to hear this but please, please call in Hospice. I can't believe his oncologist hasn't suggested this month's ago. They are a wonderful organization and will help with his pain and help you and your family. Please make the call or have your Dr handle it. God's Blessings to your husband and you.

      over 5 years ago
    • ritafaystageIV's Avatar
      ritafaystageIV

      I agree with Nanal,
      Please call Hospice. They can help make him comfortable. I understand that he doesn't want more treatment. Hospice is there to just ease his pain.

      over 5 years ago
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