• May trigger. How to know when enough it's enough?

    Asked by rebelkate on Saturday, May 23, 2020

    May trigger. How to know when enough it's enough?

    I'm giving keytruda and lenvatinib (sp?) a try. I really can't do chemo anymore because my platelets just aren't recovering at all. There are a lot of other considerations, but how do you know when it's time to quit fighting. It's a question I never had the courage to ask my friends who went through it already. Should other loved ones opinions matter? Should financial considerations be part of the mix?

    7 Answers from the Community

    7 answers
    • legaljen1969's Avatar

      @rebelkate, I cannot imagine the thoughts that must be flooding your mind right now. I am so sorry to hear you have been through so much. If you feel like you have fight left in you, then fight. I can't say financial considerations aren't a huge worry for many or most people, but I don't think it should be a consideration that causes you to stop fighting. I think the opinions of our loved ones matter a great deal, but they should not PRESSURE you to fight OR to give up.
      I suspect your loved ones know where your mind is right now, and they certainly know where you are in terms of the amount of treatment you have endured.
      This journey is nothing any of us want to go through, and nothing we want our loved ones to have to endure either. Hopefully your loved ones are supportive of whatever decision you make. Hopefully they are there to love on you up until your very last breath, whether caused by effects of cancer or something else.
      We will all have a last day and we will all come to the end of our life. Cancer is tough because we have such a long time to prepare for our end days and almost every day we contemplate them to some degree. We hold on to hope that a new treatment might work, and we hold on to hope that we can go peacefully and not have to endure any more treatments.
      I have no really good advice. With all of your questions about what considerations there are, I suspect you feel you have some sense of obligation to others to consider their finances or their opinions. Many times I contemplate things and wonder if I am being "selfish." I am not saying you feel "selfish" but here is what I do have to say. It is not selfish to want peace in your days whether that peace comes from knowing you have made a decision not to undergo further treatment or it comes from knowing you are going to fight like heck one last time. Whatever brings YOU peace is the right decision for you. Your loved ones are going to process this in their own way. You just do what brings you peace and contentment in these days.
      If you want to fight, then go for it full throttle. If you don't want to fight, then enjoy your life without the fight.
      God bless you in whatever decision you make.

      7 days ago
    • GregP_WN's Avatar

      Kate, I'm sorry you're having trouble with your treatments. I wish every treatment out there would just work like a miracle. Are you on Keytruda yet? The lenvatinib I'm not familiar with. I looked it up and here is what I found:

      (len VA ti nib)

      Trade name: Lenvima™

      Lenvatinib is generic for the trade name drug Lenvima™. In some cases, health care professionals may use the trade name Lenvima™ when referring to the generic drug name lenvatinib.

      Drug type: Lenvatinib is a targeted therapy. It is an oral receptor tyrosine kinase inhibitor - (For more detail, see "How this drug works," below.)

      What Lenvatinib Is Used For:
      For the treatment of patients with locally recurrent or metastatic, progressive, radioactive iodine-refractory differentiated thyroid cancer.
      In combination with the drug everolimus, for the treatment of advanced renal cell carcinoma following one prior anti-angiogenic therapy.
      Treatment of hepatocellular (primary liver) cancer.
      In combination with the drug pembrolizumab for treatment of patients with advanced endometrial cancer.
      Note: If a drug has been approved for one use, physicians may elect to use this same drug for other problems if they believe it may be helpful.

      How Lenvatinib Is Given:
      Lenvatinib is a pill, taken by mouth, once daily. It can be taken with or without food.
      Take lenvatinib exactly as prescribed.
      Swallow lenvatinib capsules whole. Do not crush, dissolve or open capsules.
      Do not change your dose or stop lenvatinib unless your health care provider tells you to.
      If you miss a dose, take it as soon as you remember. If your next dose is within 12 hours, skip the missed dose and take the next dose at your regular time.
      Do not take more than 1 dose of lenvatinib at one time. Call your health care provider right away if you take too much.
      The amount of lenvatinib that you will receive depends on many factors, your general health or other health problems, and the type of cancer or condition being treated.
      Dose modifications are often made so it is important to let your healthcare provider know of any side effects.

      As far as the Keytruda, most of what I read is good news. It doesn't work for everyone, just as any drug doesn't, but there are great examples of going from stage IV with poor prognosis to NED. Jimmy Carter is probably the most famous example.

      I will be starting Keytruda because my cancer recurrence is fairly aggressive and I can't have any more radiation and the traditional chemo cocktail doesn't work on my type unless it's coupled with radiation.

      When to quit? Boy that's a hard one. That is going to be a personal choice for each of us. Every one of us will go one day, but most of us hope it's not today. I will be at that point one day myself, I'm sure. My Mom was given 6 months prognosis with an inoperable lung tumor with not many options for treatment. She chose to never have any treatments. My Dad fought with prostate cancer for about 15 years. In the end he chose to not take the oral chemo drugs he had been given to take because he didn't like the way they made him feel.

      I have also had friends who took every treatment of any kind offered right to their very last day. Whatever you choose to do, have no regrets, enjoy every moment you have right now and enjoy the company of friends and family. All of us at WhatNext wish you the very best.

      7 days ago
    • Bloodproblems' Avatar

      I cannot answer for you, as Greg said it is a personal choice. Myself, I can't answer either. I only hope that when that time comes for me I will recognize that it is time.

      7 days ago
    • LiveWithCancer's Avatar

      @rebelkate, I'm really sorry that you are at the point where you are trying to decide when "enough is enough." I agree with those who say that no one can tell you when enough is enough ... that's a decision only you can make. Whether you factor in financial concerns and family wishes is also up to you ... it is YOUR life and only you know when you've reached the point that you simply don't want to keep fighting.

      For me, I was nearly to the point of deciding to quit and just let cancer have its way when I was on chemo. I didn't have a long prognosis (months) ... and the chemo was causing my quality of life to be so bad that I was alive but I wasn't living. I am personally much more concerned with quality of life than quantity of life. So, had my tumors not quit responding to chemo treatment, causing us to make a change, I might well have decided back in 2013 to quit treatments.

      For me, when I had just about reached the end of my rope with feeling terrible and the resultant depression, I was given the opportunity to go into a clinical trial. I thought I was being altruistic - I never dreamed I would personally benefit from joining the trial. I thought I had only a few more months to live and that I could help inform treatment protocols for future generations of patients.

      But, it turned out that my trial was for Opdivo, immunotherapy. And, my tumors responded (became stable) ... and immunotherapy did not destroy my quality of life or really even affect it all that much. I no longer considered giving up because I once more had a life worth living.

      When I was considering whether "enough was enough," I had not yet reached the point of discussing my future actions with my family. Had I gotten to the place where I refused future treatments, I probably would have done my best to explain why I was where I was in my life, but I probably would not have been overly influenced by their input on whether I should keep on fighting.

      I am hoping that you'll find the new protocol works great for you and that your quality of life is restored and that you can live on for many more years! You're in a hard spot right this minute, that's for sure.

      6 days ago
    • rebelkate's Avatar

      Thanks for the responses. I'm hoping the new protocol will work great, and everything will be fine. I had good news that I won't have to pay for the Lenvatinib, which is an experimental protocol that has helped improve Keytruda results. But, its hard to discuss this with family, and as I said, I missed my chance with some friends who already went through it and have passed on.

      5 days ago
    • 2943's Avatar

      Many cancer centers have trained oncology psychologist/ psychiatrists who work with patients on their journey. It is well worth the time.

      5 days ago
    • legaljen1969's Avatar

      @rebelkate, I hope your treatment protocol works well for you and that you find yourself in a place where you are no longer in a place where you feel "enough is enough." We are all rooting for you big time. I totally understand where @LiveWithCancer is coming from about the quality versus quantity of life.
      Now, I want to do my preaching bit on the difficulty of discussing with family. If you have a way to do so, and/or have not already done so, please put your desires down in writing in a way that they will be legally recognized. This will be of great help to you and your family when the time comes that you really do believe that "enough is enough." Think about who you trust to carry out your wishes and make sure they know where your directives are located, whatever those may be. In many cases, it can be conveyed in a Durable Power of Attorney and a Will. Some places require more explicit documents, but you would need to contact someone in your state who specializes in such things.
      I am not trying to worry you with "one more thing" that needs to be done. However, pre-planning can take a lot of worry off of you when the hard decisions come. This is the discussion that no-one ever wants to have. It's the decision that we all put off because we don't want to think about such things. Your post, however, tells me that you definitely have these worries on your mind already. It's better to have them and not need them than to need them and not have them.
      As soon as I got my diagnosis, and I was a Stage 0 DCIS patient, I made sure I had my planning documents in order. I am a planner that way though.

      I hope you don't have to enact any planning tools for a long time. I really do. I hope this new regimen works miracles and you are with us for a long long time.

      5 days ago

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