May2 Posted September 19, 2020 Share Posted September 19, 2020 28 minutes ago, jack14 said: Just had my seventh infusion today, and she will order one after my eigth next month. The lymph nodes aren't palpable anymore. That's a good sign I think. 24 minutes ago, jack14 said: How are you doing May? I have been good. Thank you for asking. I just recently got my first scan after starting on Retevmo. Doctor said I still have one nodule in my lung and one node in abdomine, but they are smaller than before and inactive. I started with 3 nodules in my lung, and a few lymph nodes in abdomine area. I am very grateful for this outcome, hoping it keep working for a long time. 🙏🙏 Link to comment Share on other sites More sharing options...
GaryG Posted September 19, 2020 Share Posted September 19, 2020 Jack & May: That sounds like good progress on many fronts. I wish you continued success because you fought hard and deserve it plus it gives the rest of us hope. Link to comment Share on other sites More sharing options...
Sabacat Posted September 19, 2020 Share Posted September 19, 2020 Jack, sorry, I've lost track - are you on Keytruda only? Link to comment Share on other sites More sharing options...
May2 Posted September 19, 2020 Share Posted September 19, 2020 8 hours ago, GaryG said: Jack & May: That sounds like good progress on many fronts. I wish you continued success because you fought hard and deserve it plus it gives the rest of us hope. Thank you 🙏 Praying and hoping for health and healing for everyone. Link to comment Share on other sites More sharing options...
jack14 Posted September 19, 2020 Share Posted September 19, 2020 8 hours ago, Sabacat said: Jack, sorry, I've lost track - are you on Keytruda only? yes Link to comment Share on other sites More sharing options...
jack14 Posted September 19, 2020 Share Posted September 19, 2020 13 hours ago, GaryG said: Jack & May: That sounds like good progress on many fronts. I wish you continued success because you fought hard and deserve it plus it gives the rest of us hope. Thanks Gary I hope you are doing well too? Link to comment Share on other sites More sharing options...
MarieE Posted November 26, 2020 Share Posted November 26, 2020 For those on Keytruda, how long was it before you actually felt it was working? We were told it would take two months before the scans would show whether or not the cancer was still progressing, but I'm wondering if any of you started feeling better in the meantime. My husband is on a three week cycle and due for his second infusion on Monday. The extreme fatigue, SOB, nausea, wheezing, extreme pain, etc. has continued unabated. Thanks. Link to comment Share on other sites More sharing options...
jack14 Posted November 29, 2020 Share Posted November 29, 2020 I believe it took me around three months of infusions before we saw regression, and then after another set of infusions, we saw stasis (no growth). My Oncologist said that we should continue the Keytruda treatment regimen because no growth was good too. She added that it may be possible to target one of the mutations that were identified by my genetic test in the future but for now, other than this, only chemo is left for me. Good luck jack Link to comment Share on other sites More sharing options...
MarieE Posted November 29, 2020 Share Posted November 29, 2020 Thank you, Jack. This is about our last option since the targeted drugs didn’t work. At this point it’s hard to stay positive as his quality of life is just destroyed. Link to comment Share on other sites More sharing options...
MarieE Posted December 3, 2020 Share Posted December 3, 2020 So, today is day three since infusion #2 and he is the sickest I've seen him since the worst of chemo and the targeted drugs. He is very nauseous and spitting up a lot, and goes from being cold to sweating through his clothes. He has not eaten anything today since a smoothie this morning. I'm at a loss. I understand about being "brave" and "fighting" but at some point this seems pointless and actually harmful vs. productive. Sorry, just venting at what seems to be a hopeless situation. If the cancer doesn't kill him he will die of malnutrition and starvation. His BMI is just over 17. Oh, and the pain never goes below a "5" despite fentanyl patches and gabapentin. Link to comment Share on other sites More sharing options...
Saturn_Bound Posted December 4, 2020 Share Posted December 4, 2020 Is it possible for Keytruda to potentially get a stage IV adenocaecinoma patient to NED over time? Link to comment Share on other sites More sharing options...
BridgetO Posted December 4, 2020 Share Posted December 4, 2020 I can't remember if he's seeing a palliative care doctor. If not, It might be a good idea. They can often help with pain and quality of life issues. Bridget O Link to comment Share on other sites More sharing options...
MarieE Posted December 4, 2020 Share Posted December 4, 2020 8 hours ago, BridgetO said: I can't remember if he's seeing a palliative care doctor. If not, It might be a good idea. They can often help with pain and quality of life issues. Bridget O He is seeing a pain specialist and a nutritionist but not someone dealing with everything holistically. I have not been able to find one in the area at this point. Link to comment Share on other sites More sharing options...
jack14 Posted December 4, 2020 Share Posted December 4, 2020 8 hours ago, MarieE said: He is seeing a pain specialist and a nutritionist but not someone dealing with everything holistically. I have not been able to find one in the area at this point. Gee, I wish I knew of something that could help. I would call all of the cancer centers, oncologist offices, hospice centers, and hospitals in and around your City and ask them about paIliative care. Is he a veteran? If so, then call them. And, God bless you both, you may feel alone and isolated but you aren't alone at all. There are many of us, of all ages, suffering through this on several sides (patient / caregiver / loved ones), of this nightmare. Link to comment Share on other sites More sharing options...
MarieE Posted December 4, 2020 Share Posted December 4, 2020 Thank you. I spoke with his oncologist again this afternoon and someone is coming out Sunday for an evaluation to see how they can assist. Link to comment Share on other sites More sharing options...
GaryG Posted December 4, 2020 Share Posted December 4, 2020 21 hours ago, Saturn_Bound said: Is it possible for Keytruda to potentially get a stage IV adenocaecinoma patient to NED over time? I am on Keytruda and Alitma. I asked my oncologist that same question and his answer was yes. My PDL-1 is zero so I was surprised. Of course we are all different and some people respond faster and better than others. Link to comment Share on other sites More sharing options...
MarieE Posted December 7, 2020 Share Posted December 7, 2020 Well, it turned out that the palliative care appointment was actually an appointment to discuss hospice. So it looks like that is what it has come to. My husband has dropped another 5+ pounds in the last week and his BMI is down to 16.7. Hopefully focusing on comfort care will at least improve his quality of life. It's also been exhausting dealing with numerous different specialists who often didn't seem to talk with each other. This should help in that regard as well. Link to comment Share on other sites More sharing options...
May2 Posted December 7, 2020 Share Posted December 7, 2020 30 minutes ago, MarieE said: Well, it turned out that the palliative care appointment was actually an appointment to discuss hospice. So it looks like that is what it has come to. My husband has dropped another 5+ pounds in the last week and his BMI is down to 16.7. Hopefully focusing on comfort care will at least improve his quality of life. It's also been exhausting dealing with numerous different specialists who often didn't seem to talk with each other. This should help in that regard as well. Sorry you have to go through all this, it is a lot to take. May god be with you and give you both the strength and patience. Link to comment Share on other sites More sharing options...
MarieE Posted December 7, 2020 Share Posted December 7, 2020 Thank you, May. Yes, it is a lot. And it all happened so fast. Honestly, he seems to be calmer about it all than I am. 😢 Link to comment Share on other sites More sharing options...
BridgetO Posted December 7, 2020 Share Posted December 7, 2020 Marie, I'm so sorry to hear about this. I do hope that hospice will help to make him more comfortable and that you can be together in peace and comfort. Blessings to you both. Bridget O Link to comment Share on other sites More sharing options...
GaryG Posted December 7, 2020 Share Posted December 7, 2020 Marie: Being familiar with Hospice they were a welcome help for both of us. Hopefully they give you the relief and piece of mind by taking good care of him. I wish you the best. Link to comment Share on other sites More sharing options...
LexieCat Posted December 7, 2020 Share Posted December 7, 2020 Hi, Marie, I'm sorry you seem to be out of options consistent with quality of life. But when you get to that point of not only diminishing returns, but actual harm resulting from continued treatment, hospice can be a godsend. I've heard some great stories about the relief they can provide. You and your husband are in my thoughts. Link to comment Share on other sites More sharing options...
jack14 Posted December 8, 2020 Share Posted December 8, 2020 Dear Marie: My dear friend and neighbor Gladys, went on Hospice care after her colon cancer returned and became unresponsive to treatment. She was kept very comfortable for about "three years", and peacefully went ahead of us at the ripe age of 98 in her sleep. They also provide relief for caretakers. Jack Link to comment Share on other sites More sharing options...
JamesB Posted December 13, 2020 Share Posted December 13, 2020 I wish you and your husband the best. You have been through a lot. Link to comment Share on other sites More sharing options...
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