Going my way: Decided to stop cancer treatments

Posted by kitty1952 @kitty1952, Jan 18, 2018

To make a 18 yr long story short, I was diagnosed with stage 3 breast cancer in Nov. of 2000 at the age of 48. I was told it was a very slow progressing hormone receptor negative cancer that I’d had for years. After lumpectomy, chemo, and radiation I had no evidence of cancer for almost 10 years. But was diagnosed again in January 2011 with stage 2 breast cancer in the other breast. This time a hormone receptor positive type. After surgery and remaining on Arimidex for 5 years, In Sept 2016, I was told the cancer had metastasized to my thoracic spine and two ribs. I’m told this is connnected to my BRCA1 gene mutation and is the most agggressive breast cancer there is and all that could be offered is palliative care and hope for 3 more years avg. So more chemo which was much harder on me this time, and some radiation. I developed a lung toxicity in my left lung and ended up in the hospital, in and out out of ICU three times, for almost 3 weeks. I couldn’t go home so I’ve been in assisted living on oxygen full time since July. The left lung was too damaged to get it back to normal but I did surprise all the doctors by actually pulling out of the respiratory failure and making it more than a couple months.

So we’re in the new year now, 2018, and I’m still here in the assisted living. Doing pretty well except for the endless debilitating fatigue. I’m on hospice and they do an excellent job with pain control and nausea so far. I count my blessings every day for the extra years I was given to see the youngest of my four kids graduate, get married and has 3 little ones now. I’m sure I’ve seen all my 18 grandchildren. Well, maybe there’s another possible one in the future, my son and his wife are still “discussing” having one more…lol And I’ve seen 5 great grandchildren, I’m sure there will be many more. I’ve also been blessed with all of their love and support.

I’m just wondering if anyone else has stopped all treatments like I have. I did have one more radiation treatment in November and was sick from it for about 6 weeks. I’ve decided it’s not worth being so sick when I could be having fun visits with children and grandchildren. The cancer is just taking its course now and it seems I can feel it slowly taking over. New bone pains, new aches, sleeping longer and longer, more growths or tumors I can feel under the skin. I just don’t know what to expect, it’s kind of scary. I’m not afraid of death, I just hope and pray the pain stays under control and I can go peacefully in my sleep. We don’t always get what we want but I hope I do this time.
Anyone else in my shoes?

@merine

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.

Jump to this post

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.

REPLY
@mugs24cancer

Can you tell me more about DIM? Did you experience any side effects with it? Are you also taking tamoxifen or anastrozol?

Jump to this post

I am on letrozole, as I could not tolerate anasyrazole. DIM is simply a natural pill you take two a day. It’s a natural aromotase inhibitor.

REPLY
@merine

What are the benefits of DIM? Merine

Jump to this post

It is a natural aromotase inhibitor.

REPLY
@merine

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.

Jump to this post

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!

REPLY
@IndianaScott

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!

Jump to this post

I so appreciate the account of you and you wife’s experiences with cancer. I have talked with several people who have had experiences with Hospice that mirrored yours. I’m encouraged. I just now need to make the decision of whether to try one more chemo round using Topotecan. I hope someone reading my posts will have some info about that drug. As a side question, what might you recommend that would have helped you, the “Caregiver” While your wife was sick? I see my husband growing more weary and tired through this ordeal. I’m sure Hospice will be a big help but I’m thinking about the small and large things that helped get you through the day. Thank you for responding.

REPLY

Hi @merine I am sorry for the delay in responding, but I had my entire post written to you and the system ‘burped’ and ate it! So here is try #2!

Thank you for your kind words. I wish I had some knowledge of your Topotecan, but I am not at all familiar with it. I’ve thought about advice I might give your husband and again, no magic words, but just my thoughts on caregiving.

First, I’d tell him superheroes only exist in comic books. Not in caregiving! None of us can do it alone or do it all. We can only do the best we can with what energy, abilities, etc. we each have. My wife and I talked about how we could simplify our lives and did so. We agreed there would be some things in our lives that would become ‘good enough’! Meals got simplified, laundry was OK in piles, focus was on what my wife needed (nightgowns, clean sheets, towels, etc.) and the rest could wait. Dirty dishes could sleep an extra day/night in the sink without regret. Dust bunnies became our accepted pets, etc. We agreed to spend our time on those things we cherished the most – two best friends, tea times together, her daily favorite word game in the morning, watching the birds at our feeder, and the deer in the yard. When her abilities changed our chant was ‘it is what it is’ and moved forward rather than looking back at what was lost. We added a bit of humor. I posted a sign at her wheelchair ramp and called it “Mr. Toad’s Wild Ride” from Disney. She named her cane ‘Her-icane’ and I taped it on! When she could no longer manage both lunch and dinner in a day we ate “Linner” once a day. As I often said to my wife, too, she had the truly tough part of the journey so I tried to see life from her perspective and not mine. That said, there were also times when tempers grew short, flared, and when the pain and anger got overwhelming. We worked hard to accept those times. I also tried very hard to eliminate the words doubt, anxiety, regret, etc. Impossible to totally jettison, but I know they serve no healthy purpose in caregiving. Perfection is not a caregiving option for those of us who are merely human!

I appreciated a book by James E. Miller. Half is titled “When You’re the Caregiver: 12 Things to do if Someone you care for is Ill or Incapacitated”. The other half is titled “When You’re Ill or Incapacitated: 12 Things to Remember In Times of Sickness, Injury, or Disability”. By Willowgreen Publishing, I got it free from the cancer library at Mayo Clinic, Minnesota.

Please let me know of any more questions you might have or if your husband has any!

Strength, courage, and peace

REPLY
@merine

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.

Jump to this post

@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?

REPLY

Just wanted to introduce myself, my name is Connie and I am 70 years old with stage 4 triple negative breast cancer with Mets to my lungs and spine. I am fortunate as I have a husband who takes care of everything needed. I’ve had several issues this year caused by Keytruda and had to get rid of that. But it just took so much out of me that now every little thing turns into something more and I’ve missed a lot of chemo. I have a PET scan in a few weeks that I just know won’t be good as my cancer markers are rising too. They’re still low bur rising and that scares me. I have always said quality over quantity and I hope I can stick to that when the time comes. I don’t want this to end up killing my husband too.

REPLY

I'm sure that your husband is stronger than you realize and he's showing his love during this awful time.

REPLY
@cwm1

Just wanted to introduce myself, my name is Connie and I am 70 years old with stage 4 triple negative breast cancer with Mets to my lungs and spine. I am fortunate as I have a husband who takes care of everything needed. I’ve had several issues this year caused by Keytruda and had to get rid of that. But it just took so much out of me that now every little thing turns into something more and I’ve missed a lot of chemo. I have a PET scan in a few weeks that I just know won’t be good as my cancer markers are rising too. They’re still low bur rising and that scares me. I have always said quality over quantity and I hope I can stick to that when the time comes. I don’t want this to end up killing my husband too.

Jump to this post

Hello @cwm1 I see that you’re not new to Connect and I’m glad that you’ve returned. Your breast cancer sounds pretty extensive and you’ve missed some chemo. Was that due to side effects of the Keytruda? You said that “every little thing turns into something more.” What did you mean by this? Have you been able to have some quality time or has it been a really tough year?

REPLY

I had a reply typed and it disappeared on me. Yes, almost all of my problems were caused by Keytruda. I can’t type the whole thing out tonight again. My son, dil, and 5&7 year old grandchildren came today for a week and I have got to get to sleep!

REPLY
@krishh

Hi Kitty,

As Colleen mentioned, I’m also dealing with advanced cancer. I’m in my fifth line of chemotherapy treatment, and it is pretty much the last resort. There is one trial I am eligible for, but I have not decided if I’m going to do it yet. As long as this line of treatment is working, I will stick with it. Just had scans this week and most of the cancer stayed the same – one spot showed some growth, but not substantial. So while I haven’t had to make the decision you have already made, I know the day is coming so it weighs heavily on my mind.

Like you, I am not afraid of death. I’m more afraid of living in pain and extreme illness. I have no children or grandchildren. I worry about being a burden on my sisters who are my support system. Wishing you pain free days and a peaceful passing when that time comes.

Kris

Jump to this post

Praying for you

REPLY
Please sign in or register to post a reply.