Stopping Chemoimmunotherapy Treatments

This is something I went through with my mom and a couple friends I've made in the lung cancer world in the 14 years I've been living with it.

One very close friend kept winding up in the hospital because she had very bad reactions to chemo. When she stopped she went on hospice and got much stronger and put weight back on. She and I participated in a 5K walk for lung cancer a couple months later. She survived 10 months.

The yoga instructor at my local cancer support center quit chemo and entered hospice. She got stronger and felt much better. Eventually, she left hospice and was able to return to teaching yoga and started a different course of treatment. She survived a couple more years.

Please don't question your faith and the strength of your prayers. It hurts my heart that people are made to feel that they are inadequate in their faith, you are not inadequate. If you believe in God then you believe He has a plan for you. He had given us doctors and medical science to deal with this.

Earlier I wrote to you about questions you need to discuss with your husband about plans for his final resting. Please do talk about it. It's very real. Also tell him what you want for yours. No one is promised a tomorrow.

Thank you for the inspiring stories of other people who gave up on cancer treatments. I hope that my husband can get stronger and live the rest of his life feeling better. Yes, we have discussed his passing. He wants cremated and wants his best friend to spread his ashes at their camp. As for me, no, I haven't discussed it with him. If I ever get any extra money, I want to talk to an attorney about my will. It is complicated as my mom also lives on my property. My brothers would be getting a third of her mobile home, which I don't think it would amount to much as trailers depreciate. It is not on a basement. My mom is 92 years old and you are right no one is promised tomorrow. It could be me or any member of my family. But enough about that right now. There are many changes that I need to make in my life to better my health, but my frame of mind just can't think about that right now. One thing at a time is how I roll. But thanks for your encouraging words. You said you have had lung cancer for 14 years. It is in remission? You are a very strong person and I am glad that you can still have live your life with quality. God bless you.

I have wondered when a person is ready for hospice. He is involved with palliative care but they only seem to be dealing out meds at this point. When do you know when to involve hospice? Or do the doctors suggest it?

My mom with AML also could not tolerate chemo and refused a second round. While I was sad with her decision, I understood it.

@denise96, I know that you feel helpless or that you aren't doing enough, but you're doing everything. You are loving him and caring for him, that's everything.
I've lived with lung cancer for 4+ years and I've watched people do everything 'right'; exercise, eating healthy, trying all sorts of alternative treatments, with large prayer networks. I can't explain who makes it through this disease and who doesn't. We just don't get to make sense of everything in life. Sometimes we don't have the power to direct and control a situation, or another person. We do have the power to be present in a way that we won't regret later. You are doing so much to help him. I'm not sure when the right time for hospice is but know that helping him through that stage is one of the best gifts that you can give him. It won't be easy, and he may not be able to express it, but having you there will be the ultimate comfort to him.
Hospice workers can be wonderful people. They really are a special gift to all of us. You may want to consult your husband's doctor or a trusted nurse about the timing of when to bring hospice in. They would be best at assessing the situation. In past messages you've mentioned a pastor. Have you spoken to them recently? It may help you to reach out to them too.

Thanks for your kind words. As far as hospice, I, myself, don't think he is at that point yet. We will see the oncologist on the 23rd of this month. Perhaps we will get more information then. And you are right. It is not set in stone how long a person will live without taking the treatments. asked him about talking to my pastor and he does not want to. So, I haven't called. He is on prayer chains from different churches. I know that helps. We just have to let it in God's hands.

I finished my treatment even though I spent 4 times in the hospital and numerous times in the ER. But I’m not going through with the immunotherapy. I don’t trust what my doctors say. To them everything is a breeze which is a lie. And I don’t trust the drug they have to use.
I’m sorry you both are going through this. It’s a decision only your husband can make. And it’s a hard decision to make.
I didn’t know from your message if you were talking about the chemotherapy or the immunotherapy. I had 3 months of chemo and radiation and I will never go through it again. I don’t know about the immunotherapy since I refuse to go through it.
May God bless you both every moment in time, Frandy

My husband had 2 chemo meds and 1 immunotherapy med. He got all 3 on the same day. So I don't know which med caused him so much distress. He was to go every 3 weeks for one day. He made it through two treatments and decided to quit getting them. Since his last treatment on Jan 2, he has not been well. He has not been out of the house because he has terrible balance and has fallen 4 times within a week. A hospice nurse is coming tomorrow and I hope she can give us some advice as to what lies in the future. I hope you are doing well. I am in PA and it is 6 degrees outside. Good night to drink hot chocolate.

@denise96, I'm sorry to hear you're going through this. The lung cancer journey contains many challenges, both for the patient and their caregiver(s).

I hope that you're continuing to involve medical professionals in your decisions. I know it sometimes feels like you're always having to get their attention, but it's true that the squeaky wheel gets the oil. I've even heard an Oncologist admit that as he was describing the dozens of messages from all sources he receives daily. And try every means of contact that you have: call directly, text him/her if you have their number, call their office, and send smoke signals. . . . let them know you're seeking their input.

Your husband's opioid addiction is likely interfering with his treatments, so the "average" person's experience will have little to nothing to do with his experience. You need customized, personal advice for his unique situation. I hope hospice can provide you with the consultation you seek or, at the very least, direct you to someone who can. Do you have a pain management organization available in your state? I'm going to see one here in a couple of hours.

Be sure to take good care of yourself during this difficult time. I know you're a religious person. Attending church and interacting with the congregation can provide a lot of solace and reassurance. I'll keep you both in my prayers.

Thank you so much for your comforting words. Being a caretaker is very stressful. I now have bells palsy which started yesterday. My left eye won't shut and the right side of my bottom lip is drooping. I have had it before and I recognized the signs. I went to the doctors today and she gave me prednisone. I am just waiting for them to call when they are ready. She also gave me more xanax, thank God. I only take a half of one to help me sleep. Bells palsy is caused by stress among other things. The hospice nurse did come today and explained to Joe what they will be doing. Of course, he lied about some things and I corrected him and he told me to shut up. She asked him why he had no oxycodone left. I told her that I only gave him his 4 a day according to the directions. He looked at her and said that he snuck them when I wasn't around. She said that they would be filling his pills in a pill holder and they would be monitoring them. She said you have to take them as described so we know if they are working for you, If not,we will give you something stronger. I thought to myself that was the wrong thing to say. I can just hear him tellng them that they aren't working and he needs stronger pills. When the nurse and I walked into the kitchen, I told her he was an addict. I don't want him to suffer from pain, but I don't want him abusing them either. If there comes a time when he is really in bad pain, there may be no meds that will help because he has built up such a tolerance. Well, it is in God's hands. I pray for the strength and patience I need to deal with him.

Thank you so much for your post. I’m truly sorry for what your husband and you are going through. My prayers are for your family. I can understand why he stopped. I don’t know what your state laws are or what your beliefs are, but, the only thing that has helped me with nausea and lack of interest in food and drink is medical cannabis in the form of gummies or drops. I can’t smoke pot because it makes me cough so bad. I haven’t been a person to use cannabis but the cancer center I went to plus other people suggested it. I don’t believe I would be alive today without it.
The medicine in the immunotherapy is a combination of the “medicine” they tell you about plus one of three others. Both are “chemo”. I know Hollis Cancer center in Lakeland,FL, don’t tell you this. The main medicine of immunotherapy is also chemo which they never told me. You can find this info by researching on this site.
I had 12 chemo treatments and 30-33 radiation treatments and if I knew then what I know now (which I asked over and over), I wouldn’t go through any treatment.
I hope you check out or even research on the cannabis; THC 10 mg is what helps me with the nausea and not able to eat. The CBD helps with pain. It will depend on your husband on the amount he would need and how often.
Hospice wouldn’t help me because I didn’t have a DNR.
God bless, Frandy
PS…
Please try him on the THC smoke, gummies or drops; you have nothing to lose. I was on 3 different anti-nausea meds that didn’t help. Shouldn’t Hospice be giving him anti-nausea medication through an IV or will they do that?