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Decision time

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

Update: Met with Hospice and now better understand their role. Guess I am not ready for it, so they say. In order to keep my lymphedema PT, I need to remain free agent ( :

????Just got a phone call from Hospice super and she says I can keep PT and the nurse just check every few weeks.??? So guess you will have to wait and see what pans out. The system is so big that the right-hand needs to check in with the left!!!

Well, she came back and indeed I am OK for Hospice and it will include my PT for the lymphedema!  I do think this is exactly what I want as I now have someone to call if something comes up. If you want to know more specifics, will be happy to share.

..............................................................................

The four swollen lymph nodes are now 6. When comparing the March 2020 scan and the Sept. scan, it is obvious that I have metastatic peritoneal disease. At this time, feel fine with no problems. Megace/tamoxifen stopped today as did not seem to be working.   I have a number of options as to treatment: a clinical trial with Lucitanib and Nivolumab, second phase to determine dosage; Doxil; K/L. Of course, there is also the option to stop all treatment and see what happens.

At 80.6 years old, I am wondering if the side effects might not be worse than just letting things be. My daughter and I met with the oncologist today and she sent us home with reams of information to read, digest, and discuss. We, my 2 sons and daughter, will mull this over and hear all sides and then make the decision.

I will admit to leaning heavily on the "no more" option. Sometimes it is best to leave the field of battle and call a truce. I know for many of you this is not what one should do, but I am sure there are also those who agree there is a time for everything. I am extremely fortunate to have a very supportive family that know their mother well and say," your decision and we will back 100%". That means so much. 

If any of you have taken these meds and want to offer advice, it is most welcome. Also welcome any other bits of wisdom you have learned along the way. This board has been my counselor since 2016. I find so much love and hope in every post. 

Peace

 

 

 

cmb's picture
cmb
Posts: 610
Joined: Jan 2018

Donna Faye,

I'm so sorry that you find yourself at this crossroad.

When I was debating whether to have external radiation or not since I appeared to be NED after chemo treatment and there was no concrete evidence that radiation would extend survivorship, my radiation oncologist told me that "whether or not I had radiation, no one else could say that my choice was right or wrong."

We all make choices during treatment, based on what we know, feel, and believe. I know that you will make the right decision for yourself after assessing the options and discussing them with your children. I will certainly support you in whatever you decide to do.

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Friend, you are so wise and practical and amazing.  I know this must be discouraging, and yet you present the situation with grace and positivity just leaping off the screen.  I have not been given any of those treatments so I can't speak to them, and my knowledge can't match the medical team you have in your family - but I will just say that if I were in your shoes, I'd be interested in knowing more about the clinical trial.  If I were prepared mentally for the "no treatment" option anyway, I might feel as if I'd be helping others even if it didn't help me.  However, depending on the severity of side effects or treatment, you will of course want to think of quality of life.  Either way, I'm with CMB - we support whatever you choose (and we adore and need you right here with us!)

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

DF, 

I think I might have shared this with you privately, so I apologize if this is a repeat.  

My mother was dx with breast cancer in 2010. Not only did she not want us to know (we did find out over the years) but she also chose not to have any treatment.  In the last weeks of her life she said to me, "No chemicals.  No stitches.  No regrets."  I remember resting my head on hers and telling her we would support whatever she wanted, and that there was no guarantee she would have lived as long as she did if she had done any of those things.  (she died in Aug 2017).  

Whatever you do, you will have my love and support.  We all must do what is best for us. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1724
Joined: Jun 2015

Donna Faye, not what any of us wanted to hear. So sorry the treatment didn't work.  You amaze me. I'm so grateful to have you in my cyber life and selfishly would want to see you continue treatments. That being said, I know that you and your kids will come to the right decision for you. And, whatever that is, you have support all the way through the next part of your journey. Thank you for your strength, knowledge, understanding and grace. You are very special.

Love and Hugs,

Cindi

MoeKay
Posts: 307
Joined: Feb 2004

I'm so sorry that the Megace/tamoxifen does not appear to be keeping your cancer at bay.  But I'm happy to hear that you have a number of additional options available, should you choose to pursue them.  For some reason, your situation brought to mind two people's cancer experiences that I thought I would share, for whatever they might be worth in helping you decide what you want to do going forward.

The father of my childhood friend (who herself is now undergoing K/L treatment for stage 4, grade 3 endometrial cancer), was diagnosed years ago with an aggressive prostate cancer at the age of 87 or 88.  At the time, he was otherwise in great health and looked many years younger.  My friend took him to one local cancer center, and they didn't want to treat him at all, given his age.  Due to the aggressiveness of his cancer, and his otherwise excellent health, my friend did not like this answer, so she took him to Fox Chase Cancer Center for a second opinion.  FCCC's assessment was that given his overall good health and the aggressiveness of the cancer, he should be offered the option of hormone therapy.  He chose that option and several years later, I attended his 90th Birthday celebration, at which he was still going strong.  If memory serves me correctly, he passed away at 93, and had a good quality of life until about a month before his passing. 

Then there is another friend whose husband was 83 when he began experiencing back pain.  He was another guy who was in great physical health.  He was still going to the gym 5 days a week and assumed he was being proactive about his health by going for for stress tests, skin checks, teeth checks, hearing tests, vision tests, annual physicals, among others.  However, at 80, his urologist told him he didn't need any more PSA tests due to his age, despite the fact that his PSA from his last two tests had incrementally increased.  Well, it turned out that the back pain was a symptom of widely metastatic prostate cancer.  Would the detection of his cancer 3 or 4 years earlier have enabled him to, like my other friend's father, receive treatment that would have prolonged his quality of life?  Of course, I can't say for sure, but I suspect that it would have.  He was given palliative radiation, but by that time, the cancer was so widespread, that the treatment was ineffective. 

Just some food for thought.  I know you and your family will carefully weigh all of your options, and come to a well-informed decision.  Incidentally, my childhood friend with stage 4 EC had problems with her blood pressure, and the Lenvima was discontinued temporarily.  Her doctor told her not to worry, as he said the Keytruda was the more important of the two drugs.  So treatments can be adjusted or discontinued to meet individual circumstances. 

Best of luck, Donna Faye, you are our hero on this Board!

MAbound
Posts: 1096
Joined: Jun 2016

I think you are really schooling all of us with your journey and I have so much respect for how you have lived your life with this cancer. I'm with you in thinking I'd rather go quickly once everthing else seems to no longer work. You'll know best when you've reached that point and deserve to keep your dignity and not suffer prolonged pain or a miserable quality of life.

Whatever you and your family decide, I'm certain it will be the best decision for your well-being and it's a great comfort to know that you have such supportive children helping you through this. They are a testiment to how you raised them and your special gift to the world. That said, I'm still hoping that you'll at least give some of your other options at least a try because it's always so unbearable to lose a friend!

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

THANK YOU, ALL! 

I spent several hours this morning reviewing the words of so many who we have lost. Thank you cmb for the tribute page as I was able to locate posts of such women as daylady, daisy, der maus, Editgirl, and especially Lindaprocopio! There is a treasure chest of wisdom in their posts and we are so indebted to them for being the brave warriors they were to share their good days and bad. I also have to thank dgrdalton for her excellent account of her K/L treatment. I am so at peace with everything. I am talking to Hospice next week to see what they offer in this area and to be ready to call them when the time comes. My sons joined with my daughter saying they are with me.  They are my treasures! My grandsons, 14 and 17 are also talking with me about my reasons for doing as I have done and will do. I was their nanny for 10 years, so we have a special bond.

Again, all of you are the wind beneath my wings for sure. We bond because we are walking the walk that cancer creates and we feel what each of us is feeling. My oncologist is jealous of this site as she says I listen to you more than to her. She is right!   xoxo df

Molly110
Posts: 183
Joined: Oct 2019

I so admire your courage and grit, Donna Faye, and also the devotion you and your family share.

When I was in my early 30s, a favorite NPR commentator announced on the air that she had cancer and was choosing to "die in piece, not in pieces."  I was so sad about the news that I didn't take in the details, but that phrase and her courage in facing her death on her own terms stuck with me, along with the hope that I would be that brave if I found myself in her circumstance.  Fearing the effects of chemo and balancing that against the chance of a cure, I almost chose not to do chemo. In the end, I gave in to the entreaties of the people I love most, and the chemo was nowhere near as bad as I feared it would be. But, as we all know, some cancers are sneaky, vicious beasts, and Kim Williams' choice may confront me. If that happens I hope I will be able to decide what to do with as much wisdom, peace, and serenity as you bring to your own decision.
 

BluebirdOne
Posts: 369
Joined: Jul 2018

Thank you for sharing. The decision is a hard one, and you will make the decision that is right for you. I especially loved the references to thise who have gone before us. At my lowest I searched and read everything by Linda Procopio, gone many years before my dx. She is such an inspiration I wish we could have the ability to see all comments by a poster. Anyway, there is also another 

Forherself's picture
Forherself
Posts: 479
Joined: Jan 2019

And thought of you.  I was sending you horse vibes.  You have been such an inspiration here.  I repsect your choices and hope we will be part of your journey still.   Love and hugs.

Sue

Fridays Child
Posts: 200
Joined: Jul 2019

Donna Faye, I'm sorry to hear you have disease progression.  How wonderful that you have such support from your family!  Thank you for sharing your thoughts with us, as many of us are likely to reach that decision point some day.

Yeo's picture
Yeo
Posts: 27
Joined: Nov 2019

Thank you for sharing your journey and wisdom.  I often, more than I'd like to admit, ponder the what ifs on this cancer journey and appreciate your honesty and courage.  Thank you.

Tamlen's picture
Tamlen
Posts: 290
Joined: Jan 2018

Donna Faye, I've learned much here from your wisdom, experience, and outlook on life. It seems to me that you are an example we often turn to when we're looking for someone who is the master of her own experiene and future. I wish I had something to offer you other than love, but feel you know what will be right for you. Big hug.

Maxster
Posts: 61
Joined: Apr 2020

I am sorry to hear that you are nearing a decision to end treatment.  I have enjoyed the enthusiasm and support you have shown to others and wish that your treatment had been more successful.  Whatever you choose to do, this group will be a support for you.  I have often thought about what I would do if my cancer recurs.  It is such a hard and personal decision.  I am glad to know you have a loving and supportive family who will be with you on whatever path you choose.  I wish the best in whatever road you choose. Thank you so much for offering your thoughts and experiences.  it is so helpful.  Please remember that.

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

In 1997, I had seen my 3 children graduate college( I taught in a regular high school 8-3; then in a night high school, 4-11p). It had provided what we needed financially, and of course, the children all had scholarships, grants or work-study, so we all felt a great sense of accomplishment. I had $3000 in $25 dollar saving bonds which was all I could afford to save during those years. So, to celebrate, I cashed them and went on my western adventure - working with the Hopi Indians in AZ; then just touring the west. I arrived home in late August and was now only working at the night school. One October evening I was watching TV and a breast cancer awareness ad asked: when did you last check your breast? Well, I said, it has been a while! I checked my left breast and felt the golf ball tumor! Monday I was checked by my doc and 1 week later had a mastectomy and was soon on Cytoxan and Adriamycin; 6 weeks of 5 day a week rads. With 21 nodes diseased and removed from left arm, I was a stage 3 and prognosis was grim. Got ready to die but at 55 was hoping to survive. Naturally we held a family powwow and everyone was ready.( I taught during all the treatment and did very well.)  Took tomoxifin for 5 years and was cancer free for 25 years and lived the best life! Took early retirement and worked on a cattle ranch in Montana, worked as a wrangler at a cowboy camp, visited S Africa, Canada, Mexico, then came home to be nanny for my daughter's soon-to-be born baby. Two grandsons 2 years apart and they got to be around my horses on the farm I had rented and for 10 years, we had a ball. Taught them to scoop poop and groom and ride! Joy unbounded. Then in Jan.,2017 the tamoxifen came home to roost, and I had uterine cancer, UPSC. 3 rounds of cytoxin and tyxol; recurrence on cuff in April,2018; cisplatin and rads (25 pelvic and 8 brachy); recurrence on cuff in Oct.,2019 - surgery. Prognosis was grim - told would be lucky not to be in hospice by June. Well, it did not happen. But sold my townhouse and moved in with my son, once again updated will, etc. and had a nice $ amount in MM for end of life care. 

So you can see why it is easier for us to all be on the same page. As my eldest says: "They have been trying to get mom to die for 25 years and she ain't having it!". So I have decided that each of us does cancer our own way and what works for one may not for another. All the ladies here are walking the walk and we are the best cheerleaders for each other!!!

I will keep you abreast on how things go. I have instructed my daughter to be sure you know when I am gone and to again thank you for your strong support! Remember, right now I have zero symptoms and feel fine. So just being a contented old lady being pampered by her family.  I feel your love and support! 

If I have told this history before, remember I am OLD (  :

 

EZLiving66's picture
EZLiving66
Posts: 1462
Joined: Oct 2015

Dear Donna, I read your story with awe and wonder! What an adventure your life has been. I personally believe you have made the right decision and hope that when my time comes I can have the resolve you do. You are in my thoughts and prayers, my friend.

Love,

Eldri

Fridays Child
Posts: 200
Joined: Jul 2019

You have had many blessings and some hard times as well.  I only hope I'm still around at 80 to make decisions and re-tell stories I might have previously mentioned.  Glad you're feeling well and hope you have years to be a contented, pampered old lady!

jan9wils's picture
jan9wils
Posts: 149
Joined: Mar 2017

Donna Faye, the story of your life is very inspirational. I appreciate your comments, and calm approach to the difficulties we have shared on this board. I am in awe of the strength you have. I am so happy that you have no negative symptoms and feel well. May that continue for many more years. Your eldest is spot on: "she ain't having it"

ConnieSW
Posts: 1543
Joined: Jun 2012

I am not writing you off yet.  Like you, my grandfather, a wonderful man of great courage, had several close calls in the last 25 years of his life.  I used to say the only way the grim reaper would get him is if he snuck up from behind in the darkest part of the night because if Pappy saw him coming, no way was he going along.  Since you are feeling good, I hope you have lots more time.  You have packed 160 years of living into 80!  What an example you are to your family and us.  

your online friend, Connie

Frances081920
Posts: 23
Joined: Aug 2020

Donna Faye, thank for such an inspiring life story, your courage and attitude are amazing. God bless you on your journey, whatever your decision, I'm sure it will be the right one.

We are here for you.

els19
Posts: 90
Joined: Jun 2014

Thank you for sharing your thoughts. You are an amazing woman! Many of us on this journey know that someday we will be where you are now. I really appreciate your well thought out decision. I wish you well on whatever becomes your final decision. 

Mercorby
Posts: 32
Joined: Jan 2017

Thank you.
Your story came at exactly the right time for me. I've been on this cancer journey for 5 years (endometrial, surgery, 2 recurrences, and now in remission, but on Ibrance for Maintainance). The other day, during my port flush, I sat between two women who were further along on this journey - both had worse recurrences each time. We chatted and then, I went on my way leaving the others to their continued treatment. I felt restless that night and a bit edgy the next morning. It took me a while to understand, but I realized that these two women were me - in the future. That lead to a funk for me. The doctors have already told me that my cancer will definitely come back, but that there were many new treatments and many old treatments that would work. I could keep going for 20 years.

Donna Faye, reading how you have fully lived your life between and during treatments really reminded me to live more in the moment again. I had lost sight of that for a few days, but I feel like you jolted me back into it.

Many blessings to you and your loving family. You give and receive love. I am so grateful that you share your personal journey. Peace to all.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I'm sorry to learn of your outcome.   I'm kinda there're with you but I wish I was 80 not 60.  I'll keep you posted if I can.  

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

You are so right - it is very different at 80 than 60. My BC diagnosis was at age 57 and I took all the treatments they told me would help. You have been such a trooper and I hope your treatments make it better for a long time. I was just glad to hear from you. xoxo df

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I'm not implying 80 is easier than 60.  It's never enough time. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

Susan, I don't think any of us took it the wrong way.  Prayers my warrior friend.

zsazsa1
Posts: 551
Joined: Oct 2018

Donna, so sorry to hear the the treatment was not efficacious.  I am hoping that you and the family take a good hard look at all the options.  It may be that the offered trial has minimal side effects, and potential benefits.  The life background that you gave makes me understand now your courage.  You must have always been like that.

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

Hi Donna Faye:

Sorry things were not working out.   With regard to Hospice, there are two ways to look at it.  Hospice/Pallative Care means that you can still go for your treatments and office visits etc.   Just Hospice means that you are entitled to nursing care and medications and medical supplies that you may need and they will bring it to you.  However with this option you cannot do anytype of treatments.   On a further however if at anytime you are feeling better or feel you rather try treatments you can of course change your status. Its your choice and they are there for you for whatever choice or questions you need or may have.

I love your outlook on life.  Keep smiling.  Sending you lots of hugs!

Kathy

Fridays Child
Posts: 200
Joined: Jul 2019

Donna Faye, my mother had a friend who was in and out of hospice care for several years, so you can certainly stop if you so choose without giving up the option of further care when you need it. 

When my brother went into hospice care, he was still going to go to his oncologist every three weeks instead of every week, which was a great relief to him as the trips were exhausting even with me driving him.  Hospice was going to provide his medications to treat symptoms.

Whatever you choose, you can always change it if you want.

zsazsa1
Posts: 551
Joined: Oct 2018

Donna, thank you for posting that part of your life story.  It tells me that you were always courageous.  Your family is so lucky to have had a matriarch like you.  

It sounds as if you've decided against the clinical trials, and for that, I cannot blame you one bit.  You feel good now, and I suspect that with the trial meds, you wouldn't, yet they have little chance of helping now.

We're having a beautiful, warm fall in my part of the country.  I hope it is the same for you, and that you and the family enjoy every minute of it together.

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