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Going my way: Decided to stop cancer treatments
Breast Cancer | Last Active: Sep 5, 2023 | Replies (71)Comment receiving replies
Hello Kitty. I understand your reasoning for “doing it your way”. I’m in a quandary right now about whether to proceed with further treatment. I was diagnosed with stage IV Primary Peritoneal cancer which is being treated like ovarian cancer. I was diagnosed in August, 2017, and have since gone through two types of chemo treatment, anddebulking surgery. During this time, I’ve had multiple side effects from the chemo that hospitalized me 3 times for a week at a time. The initial treatment of carbo platen and Taxol were quite effective but all subsequent treatments, less so. I’m most grateful for the time I’ve been given since diagnosis. I was told I likely had only 18 months to live and it has been twice that. The tumors/masses are growing and spreading as are multiple cancerous lymph nodes and the only option after Doxil failed to diminish the cancer growth is Topotecan which I’m told and have read there are some horrible side effects associated with it. I’m in a quandary as to whether to proceed. I’m told I have less than six months to live if I stop treatment altogether.
We’ve met with the case manager and social worker for Hospice and I feel very comforted by all that will be available. Two of my greatest fears is not being able to manage the pain and dying alone. I don’t want to be admitted to a hospital because of what is happening with the corona virus. My fear is once in the hospital I won’t be able to return home and my family would not be able to visit me. I’ve seen far too many news clips of people saying goodbye via Skype or FaceTime. I’m not being critical of either, it is a blessing in some ways, but heartbreaking as well.
Does anyone have any experience with Topotecan? It would help me to know what others have gone through and how effective it was. I have an appointment on Tuesday to give them my decision of GO or NO GO. If NO GO, I’ll go directly into Hospice.
Thank you Kitty for starting this thread. I think I’m at the “preferring quality of life“ vs. quantity of life. Of course I’d like both but as an old song goes: “you can’t always get what you want, but if you try real hard, you can get what you need...
Love and prayers to all who are on this journey.
Replies to "Hello Kitty. I understand your reasoning for “doing it your way”. I’m in a quandary right..."
Thank you Merine, for sharing this. After 18 months of harsh chemotherapy And no treatment end in sight, I can relate to the questions of quality vs quantity of life. I had a couple thoughts about your post. Are you planning to go into home hospice or a hospice house? If a hospice house, that is where you would spend your final days, not in a hospital. I have had 2 dear ones die of cancer in hospice houses and both experiences were comfortable and kind to all involved. This is my choice when the time comes. I do not want to die at home because I want my loved ones to not have to worry about anything except enjoying final time with me. Regarding the Topotecan, everyone is so different in their responses to these drugs. For example, early this year I was changed from Irinotecan to gemcitabine and I was told the latter would have fewer side effects. NOT. I was sick as a dog and have since been changed to yet another drug. It seems like it could happen the other way around too. So, it seems like you could try it and if side effects were intolerable you could stop. If you have been hospitalized 3X from chemo side effects though I can certainly understand your fear. I would candidly discuss this with the oncologist before being pressured into the go, no go decision. Peace and all good in this journey.
Hello @merine I hope this finds you doing as well as can be hoped for today and that the sun is shining wherever you are located! I am sorry to read of your health journey. I know every patient and their disease is unique, but I share my wife's experiences for what they are worth for you.
I am Scott and I was my wife's caregiver during her 14+ year war with brain cancer. During her war she made two decisions, which she never regretted. One was in the very earliest days of her disease when she told me she would be a 'quality over quantity patient' no matter what. Many of her subsequent decisions were ruled by this master decision and it served her well. While certainly not for all, she did forego some treatment options due to the potential outcomes and/or side effects.
Her second grand decision was to enter home hospice immediately once her neurooncologist prescribed it. She never regretted this and received truly amazing patient-centered care for the 14+ months she was in home hospice. Her pain management was also a challenge during her disease, but it was the best in home hospice and her nurses and doctor were amazing!
I wish you continued strength, courage, and peace!
@merine, in these times of COVID-19, there is an extra layer of complexity to your decision. I hear your greatest fears of "not being able to manage the pain and dying alone." I'm confident that hospice care can assure you that your pain will be managed. They specialize in pain management. Be sure to ask them questions now AND tell them your wishes and fears about pain.
COVID is an unknown for all of us unfortunately. Thus I echo @susandc's question about whether you are seeking residential hospice care, where you live at a hospice facility/home or home hospice, where palliative and hospice care come to you in your home. If home hospice is an option for you, then it may be easier to be in control of who is at your side through this journey. What options are available to you?
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To marine. Keep up with the meds, but you may wish to add DIM which is a pill that has extracts from cuciferous vegetables. It will not interact with other meds - I asked the docs. I have BC that has metasized to the bones. So I am hitting it with everything. Stay strong!