Saying no to more treatments

[bannar]

Has anyone just said no to more and harsher treatments? I am not interested in living longer and feeling miserable with the side effects.

[howsthis]

i have to say i am very interested in living as long as i can. the side effects are at times harsh, but i'm not in extreme pain. my bones ache, i'm tired a lot, my hair is thin, i get mouth sores, no stamina, and on and on. but i have 2 children and 6 grandchildren who i enjoy! i paint pictures and rocks! i go for walks, even if they're short ones. i smell the fresh air! i live! at the end of each day, i practically collapse, but i wouldn't give it up! i feel each day is a gift and i never know when one will be the last. until then i will live!❤️

[queeneee]

I have said no to certain treatments, with the knowledge that there are other things to try.. maybe they will be worse!? You can go back and pulse treatment with drugs that have worked for a while in the past? I have pulsed back to letrazole to give myself a break. I am a big believer in cycling and dog walking , for mental and physical health.. I find it helps with side effects. I hope you feel more optimistic another day.. whatever your choice is - you need to feel happy with it.

[hurricaneheather]

i am grateful this body has been stable/NEAD for fIVe of the six years on the mets JOurneY. still on first line of treatment. have altered treatment plan to meet "my" needs, as i choose quality of life; quantity is important to me, also. experience life and living with an integrative approach, with more integrative over the past ten years. each person's JOurneY is individualistic, and fortunately treatment has become, too. my you be at peace with your choices. may you live with ease.

[Hidden]

Hello - I’m so sorry side effects are making your life miserable. I completely respect each person’s choice and pain threshold. In order to share my thoughts, it would be helpful to have an update of your condition and treatment.

I for one identified a hospice back when I was first diagnosed with bone Mets in 2018. It helped me to know this option will be there. In the meantime, I push forward.

watched a few dear family members suffer the last few months with kidney cancer and AIDS despite assurances they could manage the pain. So, I get where you are coming from. I’m just not sure where you are now medically or what palliative options you have. I am willing to offer my input FWIW if you are comfortable sharing a few more details.

Im sending you a virtual hug.

[Bestbird]

I am sorry to hear you're going through such difficulty on treatment. Please consider speaking with your medical team about Palliative Care (PC).

Palliative care is meant to help anyone with a serious illness by maximizing their comfort level as much as possible. It differs from hospice care in that the patient does not need to be near end of life, and they can continue to receive standard treatment while on palliative care. Patients can request it at any age and any stage of an illness (even upon diagnosis), and it can be used along with curative treatment. Palliative care is not dependent on prognosis. With palliative care, patients can expect to have more control over their care, along with a comfortable and supportive atmosphere that reduces anxiety and stress. The patient’s condition and situation are reviewed regularly by their palliative care team, and they are discussed with the patient to make sure that the patient’s needs and wishes are being met and that treatments are in line with the patient’s goals.

Therefore, patients should start palliative care early for best results (although it may be requested at any time), and patients should request it from their doctor instead of waiting for their medical team to bring it up. It is important to note that caregivers are also able to receive palliative care.

Most insurance plans, including Medicare and Medicaid, cover all or part of palliative care treatment. Palliative care is generally available in a number of places including hospitals, outpatient clinics, long-term-care facilities, hospices, or home. Usually a team of specialists, including palliative care doctors, nurses and social workers, provide this type of care in conjunction with the patient’s doctor. Massage therapists, pharmacists, nutritionists and others might also be part of the team. To obtain palliative care in order to manage cancer or treatment side effects, the patient should speak with her or his doctor or nurse. Alternatively, patients can look up Palliative Care providers in their area at: getpalliativecare.org/provi...

[Red71]

I also am not ready to give up although I have had moments, I think we all do! I participate in the palliative care program at my cancer center. They are very good at making sure I get pain medication that works and helping me deal with the side effects of that...constipation among others. I have very little pain at this point, much less than previously, and even though I’ve gone through two pretty bad hospitalizations when changing meds I am not ready to give up those grandkids and kids. Before you say no to any more treatment I would explore palliative care. You can always be done if it doesn’t work. If that is your decision in the end, we will all support you in making it. It is your body and your life after all and you should be able to make those decisions for yourself. I know I will be when that time comes. My best wishes go with you while you make these hard decisions. Elaine.

[EvaL]

I think I responded to another person and meant to respond to your post. Anyway I have thought about that myself. I have lesions on every vertebrae in my back and on every rib bone so at times my pain level can be very high. I do have a new grandson but he is starting to be more than I can handle. I do get out in my garden and I have started crocheting but I can only do so much of either one before I start hurting. Now I had oral surgery and lost 4 teeth which effects my speech and smile. Life is getting harder for me too. It’s not a simple decision and I pray you make the right one for you.

[Antares12]

If you'd talked to me a couple of months ago I would have agreed. I was not tolerating the ibrance well. I'd go 4 or 5 days on the ibrance and end up in emergency. The last time they found out my gall bladder was severely inflamed and removed it. Since then I've tolerated the ibrance easily and other than my nails being very brittle and dry skin I'm doing ok now.

[Timtam56]

I have not had the need to do this.....yet.... But I have told my oncologist that if harsher treatments are necessary in the future, not to be shocked, but I may choose not to take them. I feel it's our right to do what we want.

[mariootsi]

I wish you well in your decision. We all will need to decide that at some point. It is a truly individual decision. I support you in whatever you decide. I do however see a palliative doc who is helping me manage my side effects.

[pinkrv]

I am considering it and plan to speak with pallative care today about it. Quality of life is more important to me than quantity. My pallative care Dr said in the past she could help me with these decisions.

[Nunky]

Im so sorry to hear you are miserable and suffering. Your treatment choices are yours but do take your time and get others' opinions, and whilst its a huge cliche remember the hardest battle is in your head! I know myself when I'm down it can all get too much and when I'm more stable life is much easier. I try to take it all one day/stage at a time and get on with living - albeit in a vastly different way than before. Take care xx

[lynnhbtb]

I’m sorry for your progression. Sounds like you have some options, which is always good in my mind. I, too had liver progression and basically got 4 opinions, all a little different. I opted for Iv chemotherapy with Keytruda and started with taxol, both via IV. You’re right, if or when it stops working, they’ll want to switch you and you can get those other opinions again. It’s a tough decision and only you can make it. Support it either way.

I will say I’ve been on IV chemotherapy for a few years and different kinds. I have a Port which makes it easy not

to damage veins. I have supportive therapies like massage, supplements for side effects, meditation, exercise, etc. I have used cold caps for a couple years now and have managed to keep my head hair. I’m pretty private and didn’t want to stand out as a cancer patient by being bald. I went bald on my first chemotherapy treatments in 2012 and didn’t want to go that route again if I didn’t have to. Wigs didn’t work for me.

I hope you’re finding some peace in your decision making. Sending virtual hugs your way.

Lynn

[PJBinMI]

I've been in constant treatment for MBC with bone mets only for just over 17 years and I have thought that there may come a time when I decide it's time for palliative care only, that is care to keep me as comfortable as possible. I'd like to think that when that time comes that I will still be able to get out of the house and do some things for fun or at least keep reading good books and enjoying dinner and a glass of wine. But I may be much more limited than that.My mother died from lung cancer in 1985, about 6 months after she was diagnosed. She and I lived about 1200 miles apart and I visited her shortly after her diagnosis, then during spring break when my daughter could come with me, and again shortly before she died. I was fortunately able to extend that visit when it became obvious that she was very near the end of her life. What I saw with her reassures me that we can be kept comfortable and that cancer is far from the "worst way to go." I'd like to have final short visits with my close friends and have my family with me at the end. My husband's first wife had MS and her death was very hard on their daughters, who were young adults when we married. I hope that my death will be very different for them (obviously losing mom is very different than step mom!) and that we can talk about it. I've made a point of talking with all my family about whatever cancer news I have and how I am doing and what I am hoping for. My daughter and brother are pretty comfortable with that and one of my step daughters is comfortable most of the time.

OH, I also have the nutty idea that I would like to die outdoors! lol I don't know if that will be possible but I love being outside. We have ten acres that is mostly wooded and I love living here and the way the trees change through the seasons.

I guess I'm rambling a bit......guess I'll stop now!

[Andersl]

It's an individual choice. If that's your decision it should be respected just as a.n.other might decide to carry on with treatment till their last breath.Both are brave choices. We dont make them lightly but take into consideration the circumstances in our individual lives and what we feel is best.

[dnamscg]

I go this week to have scans scheduled, Faslodex shots and start the 5th cycle of Ibrance. Started with 125mg then the next month 100mg and this week would be the 3rd cycle of 75mg Ibrance. Have had severe headaches everyday all day for the last 2 weeks and am not on my off week till tomorrow. I have thought about stopping all treatment for 3 months. After the scans I will decide whether to stop. Quality of life isn't good right now. It is a very hard decision to make. Chemo was a breeze compared to this.