I had made an appointment on August 25 to see about hospice care at home. I didn't intend at that time to start hospice, but I was convinced by the admitting nurse to begin immediately.
My medonc (medical oncologist) had suggested stopping the Xtandi and remaining on palliative care, but it was plain to see that the Xtandi had stopped being effective after 25 months. I had new lymph gland metastases and some increased bone mets, along with some increased "uptake" on my entire skeleton, from shoulders to feet---"possibly arthritis" or something else?>
But the cancer plus the radiation treatments, Xtandi, Firmagon and Lupron had left me so weak and emaciated that chemo wasn't possible and it was obvious that any additional treatment would be too hard on me to tolerate.
Some guys can go through so many rounds of different treatments, or even just the hormone treatments and successfully control the cancer for ten years or more, but I have a particularly sensitive metabolism, and I seem to get the full side effects of just about every medication. Where the Firmagon or Lupron frequently causes weight gain in a lot of guys, I lost so much weight and muscle mass that I am very emaciated.
At first, it felt like a defeat going into hospice, but it's not really a defeat, it's an acceptance that I have to face reality, and that it's time to rest from the battle.
Now I am trying to regain some strength again, and to at least be as comfortable as possible before I face the final battle. It may be a battle, or it may be a slipping gently away, but I'm hoping that it won't happen for quite some time.
Whatever happens, I want to face the end with courage and grace and serenity.
I intend to keep posting about my experiences with hospice care at home for those who want to know more about it, and who have been following my case. And I hope to inspire others who face this difficult part of the journey..
If I can find the courage and strength of spirit to face the inevitable; anyone can.
I never thought of myself as a particularly courageous or strong individual, but somehow I've found the strength within myself to deal with the fact that I have an incurable illness. And if I can do it; anyone can. Adversity can bring out the best in almost all of us. I found great strength from the cancer support sites, like this one, and the now-defunct Malecare Advanced Prostate site on Yahoo.
I felt so alone and lost when first diagnosed---I didn't know much about the advanced metastatic prostate cancer, but learning what I face, the information about treatments, and the fact that I'm not the only one going through this was a vast help to me.
And then I seemed to inspire others with my postings about my battle, and this was so gratifying, to be of some help, and feeling useful in spite of my limitations
God bless all of you,
CERICWIN
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CERICWIN
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God bless you. You have been so inspirational and helpful. I've read all of your posts. I want you to know that my thoughts and prayers are with you on this journey. This is truly a dreadful disease and I feel for you and all others going thru it. Know you are not alone and that there are many of us with you in spirit.
Hang in there Cericwin....you are an inspiration to all of us with this blight! I will be reading your posts.
Cericwin, your posts have been a source of knowledge, encouragement and hope as I try to make sense of what is happening to my husband. Please know that you are not alone in this...many of us walk with you. You are in my prayers.
Thank you, everyone, for your encouragement, prayers and wishes.
I hated to stop treatment, but it became apparent to my doctors and myself that I couldn't continue, as I was so weakened, and the Xtandi wasn't effective anymore, with new lymph gland metastases, as well as some growth of the existing mets. In addition I have other physical problems, such as a small abdominal infrarenal aortic aneurysm, and the deterioration of my entire skeletal system with increased uptake from shoulders to ankles.
The hospice team is doing absolutely everything possible to meet my needs and make me as comfortable as possible. The pain is not the worst part---it's managed by morphine and Dilaudid for the breakthrough pain, but the very worst part is the episodes that I'm having of feeling so extremely ill at times. It's the hardest thing to tolerate.
I also have extreme nausea and constipation, with impactions and even intestinal blockages at times---but they have given me all sorts of new meds to deal with it.
It is a strange feeling that the cancer is now growing, uncontrolled, inside of me for the first time since treatment began. I don't know how long I'll last--it's anyone's guess, but I'll just try to enjoy the time I have left, and will continue to post as things progress---good or bad.
Thank you, my friends and brothers in this, and also to the caregivers/partners,
It aint over till its over ....I will always believe this....You are alive,continue to fight,dont give up...maybe with hospice care you can gain strength and then start chemo...Dont give up...You have a strong spirit...My thoughts are with you
For constipation, I have found two table spoons of cherry flavored milk of magnesia at bedtime to be very helpful. I take it at bedtime any day when I haven' t succeed in having a bowel movement that day. It' actually quite pleasant tasting and usually results in a bowel movement the next morning.
Eric, I am so sorry to hear you have reached that critical point where you have to make your own decision to accept the finality of this disease but it sounds like you are handling it with grace and dignity. I also think it is always so special for the rest of the group when you are able to share your experience, even at the end. I remember reading a fellow named John who posted his final months to help others understand what they might expect. He wanted to ally fears. Fear of the unknown was always rough for Harley and I shared some of that with him. I know whatever you share will benefit others and maybe just keeping in touch here will help you as well. Support comes in many forms.
It always seemed to me that, although people meant well when they said don't give up, this sort of comment just made Harley feel like if he accepted things and allowed himself to get assistance from hospice...he was giving up. So he never did. I don't think it's giving up. I think it's accepting reality and in some ways gives you a sense of peace. There does come a point where our bodies can take no more. I hope you have a lot of great days and find ways to use them to the fullest. I look forward to your continued posts. Thank you for all of your support when Harley was with us. I miss him so much.
I'm so delighted to hear from you, and I'm so glad that you're still here after Harley's passing. I hope that you're doing well, and now he's at rest and no longer suffering, you can remember all of the good times you had together. I'm sure that he wants you to continue and find happiness in your life.
Going into hospice at home care was not a defeat for me, but an acceptance of necessity and reality. It takes courage to accept the inevitable. I must rest now and gather my strength for the final struggle, but I hope that it won't be a struggle, per se, but a quiet, serene slipping away gently into eternity. Like flowers, our lives bloom, but the blooms inevitably fade.
I have absolutely no idea of how long I'll last. I didn't even bother asking any of my doctors, as nobody can really give an accurate guesstimate of how long I have. There are so many things wrong with my body now, together with the cancer.
The hospice people are wonderful, and devoted, to try to make me as comfortable as possible. Now it's late, and I've got to get some sleep, so goodnight, Charlean, and God bless you,
I hope I can accept my dying when it gets closer as well as you have. May you have the kind of death you want. I want you to hang on as long as you can as I am going to miss you
Charlean, so well said. Hospice isn't giving up. In fact, some people move in and out of it. I know one fellow say when he decided to stop the suffering by stopping the fight and going into Hospice, he felt much better. So, we never know. Nothing is etched in stone. This is in a way, why we as humans find it so difficult, because we want to nail things down, we want answers..
BUT, do we really?
I remember John also.. isn't it interesting how he lives on through us.
Eric, my hat is off to you as you have shared many intimacys with us that has helped me to continue this journey in your foot steps. Your postings have helped me understand the many symptoms I have that are side effects of the treatments I and others are receiving and that none of us are alone on this journey through life. I am truly inspired by your candor and the courage to spit in the face of this monster we deal with. Thank you so very much and keep up the great fight.
Erick, i don't know what to say ... i have read all the comments that others have posted, and collectively they have said what i would like to say , only better. i will continue to be thinking about you and please keep us informed
Hi Eric, I have followed your posts for a long time on Malecare and now this site and have admired your strength and honesty and especially now at this time in your life. I find it hard to put into words the emotions I feel for you and all of us with this illness. My heart is with you our friend, we lv ya.
Everyone has said it all but you have been an inspiration to us all and I thank you so much and I wish you all good things to come.
I am not too far behind you, on Chemo now and will follow all your posts. I am so sad for you and I hate this horrible disease with a passion. I fear I am not as strong as you.
I've followed your entries for a long while and you are and have been an inspiration with your candid information, your courageous attitude and your interest in helping the rest of us.
I've mentored a PhD candidate in Biomedicine at the University of Newcastle and always research everything that I can in any field of study. I've been at uni since I was 17 and only stopped formally about 7 years ago - 75 spring chicken ... no out!
The organiser of TedXSydney I taught back in what seems like Jurassic times and here's a link for you to watch - ted.com/talks/paula_hammond...
You might note that there has been a breakthrough in Australia with a treatment for melanoma which has just started human trials and there have been some remarkable results. One participant in the study - still doesn't know what he was given - has had a remarkable turnaround in his condition ... his cancers are shrinking dramatically - see if you can access this study.
We have perhaps the highest rates of skin cancer in the world ... there are many light European skinned descendants of the Irish, English & Scottish ... we live in a brilliant land in which the indigenous peoples who were probably the oldest inhabitants on earth lived sustainably and amicably with nature and whose skin adapted to cope with the harsh light which give us our brilliantly coloured skies and colours.
I've got PC was Gleason 7-8, had a radical prostatectomy with complications with the 'join' being satisfactory - meant that the surgical clips were left in for a few more weeks than planned and had to be 'ripped out' because they became overgrown. The PC had broken through the capsule and I followed with radiation of the bed of the prostate and now on Lucrin - having ghastly side effects from Lucrin and find that each 3 monthly injection has remarkably different level of side effects ... up and down.
Began with 'rests from Lucrin' which were introduced to try to extend the period of effectiveness of Lucrin but then the PSA started going up so now on end-on 3 monthly courses of Lucrin. Had the Gallium 8 scan which can identify down to 2 microns - brilliant- but this identified a few small spots which weren't identifiable previously.
I've just gone through having a sister in law of 59 with dementia go to a hospital - very healthy otherwise - gerontologist says nil by mouth and on morphine - they last 1 to 7 days!!! Lasted over a week and a half! Be thankful you've got a 'reasonable' support team.
p.s. I insisted on Zoladex before during and after radiation and continued on for 12 months - the radiologist resisted my request but gave in and later did some studies and now it is considered 'best practice' to use the Zoladex in relation to the radiation such as I organised - previously they only used to use Zoladex later when positive effects of the radiation of the bed of the former prostate began to lessen. Never did get credit for the suggestion.
I had long service leave and worked for a pharmaceutical company Wellcome - Burroughs Wellcome in England is a charity in that all money raised has to go to research and education. I was given in depth training in the products they produced - an antibiotic - Septrin ... a combined antibiotic Triprim and sulphmethoxozole ... Triprim was and is used for urinary tract infections in women, Zyloprim, and Wellcome are the only ones still to produce a byproduct of the Foxglove plant which was used in the Midddle Ages for 'dropsy'. Lanoxin is the product and Wellcome is still the only firm authorised to produce it because when it came out of patent any firm which tried to make it couldn't maintain the exact dosages (they're very small quantities and patients died left right and centre from the product made by other pharmaceutical firms). (St Anthony suffered from CCF ({Congestive Cardiac Failure - you're kidneys can't extract the water well enough so you accumulate water inside the body and simply drown in you're own fluid if left untreated}. So St Anthony would have been very overweight - stark contrast to the statues and pics of him with the Child Jesus where he's slim! You could open the knees of patients up to three times previously, to drain the fluid that accumulated in the legs, and after that the patient usually expired). A bit of trivia on the side so that we can all have some light relief.
Although I have been with this community just a short time, your postings have always stood out as very helpful, encouraging and inspirational. Thank you
for all that you have contributed, more important, thank you for having the courage to continue to post. God richly Bless You.
Sorry to hear things have progressed to this point. Thanks for sharing your decision to begin hospice care. It's a deeply personal and individual decision we will all have to face at some time. I look forward to hearing from you as you progress. It will be helpful to many of us. I admire your courage in facing and making this decision and in sharing your experiences and thoughts as you go forward. May the force be with you!
HERO in everyone's book that you have reached out to and touched. Your inspiration resonates with anyone who reads your advice and shares your knowledge.
I was thinking of you this morning... Of your voice on this forum, and what you have shared about your journey. You've made a positive impact on me. Thank you. And read my email daily digest and read this about the next steps in your journey. I hope it is rich and fulfilling, as free of pain as can be hoped for, and that you can make the most of it all. I'll be following your journey, here in this forum, and further down the road in my own way too. Bless you brother.
Eric you are you have opened your life to us in our mutual battle with pc. Your courageous in your fight and I only hope that I can face the end of the battle with your grace and courage. I feel you are truly my brother in all ways. I think we will all miss you terribly when you go to your new adventure. Don't make it too soon we still need you and the courage you give the rest of us. We love you Eric.
Eric, we all are wishing you well. You helped me when I was diagnosed with stage 4 Ductal cancer. I was in a dark place, you showed me that there is light. Please let me return the light to you. God bless.
God Bless you Cericwin, my heart goes out to you. I am basically just starting this journey with PC. I cried when I found out that I had the big C and my eyes well up reading your post. I just hope I can have your strength to deal with what may be coming as you have. So far I have had 39 Proton radiaction treatment and the PSA has dropped to .35. Now just waiting on the next shoe to drop. Again, may God Bless you and keep giving you the strength that you are showing all of us now.
dirtfisher, one of the symptoms that goes along with a diagnosis is as you say, waiting for the next shoe to drop! If we could have a solution for this, we'd live an entirely different life.
I've struggled with that shoe now for almost 10 years. I believe it's important to recognize how our quality of life gets stolen from us because of it.
This is why I keep looking at it, working with it, shifting, experimenting... especially for my type of personality which is one of a caregiver and helper, less dedicated to myself.
I do believe, somehow there is a way, a practicing, some sort of wisdom that will allow us to live while we are living- not with out heads in the sand, but more living than WAITING.
M8 you are an amazing person and an inspiration to us all my thoughs and prayers are with you hope you can carry on a lot longer take care hope to read more of your helpful posts.
Eric you are an incredible person you are an inspiration to all of us. You have always been one of the first to respond to prostate cancer questions posted on this forum. Your experiencce with multiple different treatments and the information you have provided has helped us all in one way or another! You are in my thoughts and prayers. I hope you continue foward with the strength and solace you have provided to all of us. You will never be forgotten my friend! From the bottom of my heart thanks for all the information you have provided.
I wish that I had the time and energy to reply to each and every one of your for your kind words and support in this difficult time. I simply don't have the energy to post as much as I used to.
Things have moved more quickly in this phase than I'd expected, and it's not just the cancer but multiple physical issues probably brought on by the strain of the cancer and the treatments, such as arthritis, an an atrophied pancreas, an abdominal aortic aneurysm and atherosclerosis-----and they're just the "A's,"........lol (pardon me for a little black humor).
But my health has deteriorated to the point where now I require hospice at home, and now at least they're trying their best to make me as comfortable as possible. I also have severe nausea, constipation, and impactions, and intestinal blockages frequently.
But thank you, everyone. Your kind and generous outpouring of love and concern helps to sustain me.
Eric - you have been and remain an inspiration to so many of us. I hope this phase of your life is as comfortable and peaceful as possible. Please be comforted with the knowledge that you have helped so many!
You are a Fearless, Brave and Courageous Warrior Eric! I have tears rolling down my face as I read what this awful disease has done to you and so many others. I am wishing hoping and praying that something will change and turn around or that some Doctor will be able to give you some medication that will be able to help. Everyone knows how thankful you are for their words from their heart's and how much you care and want to help others. You truly are a HERO....sharing and helping others in another chapter of your life. I'm so sorry for your nausea and sickness and I hope they can help with that.
My arms are wrapped around you for comfort... and my continued prayers.
I'm sure we'll meet personally in some chapter of our life's journey wherever that may be ♡
I woke up and found your reply, it's now quite late and I've got to get some more rest, so I'll have to keep this very short. I had a very bad episode today, it was one of the "crashes" that I've been having for several years, but a little worse, and followed by an episode of extreme dizziness, which is unusual.
But I'm feeling better now, and I had slept right through time for my medications. Darn it! Now I'll have to readjust all of my medications again all day. Being off my meds' timing for four hours is a little too much.
Goodnight, dear Jackie, and hugs to you---and to JR and Elgie,
I so much hope you are continuing to feeling better since your crash yesterday. That must be so exhausting and deplete you of anything you barely have.
I hope the side effects of adjusting the medications yesterday and today are not taking its toll on you with pain, nausea etc.
I also hope you are gaining a little strength since stopping the Xtandi.
Please send my good wishes and hugs for all who are helping you through at this time Eric. It takes special people to be so kind.
It's been a long month and I think I'm going to rest for the night.
I too, have anticipated reading your posts, all without judgment but full of courage, empathy and compassion. My ex will be entering hospice this year at the tender age of 45. I look forward to reading about your experiences and using those as a guide to diminish fear, anger and uncertainty in the father of my very young children.
Within a couple of days, I'll make an entry about one month in hospice, with info about meds and more about how the hospice works.
This can help others, which is always my first priority. I'm so sorry that he's going through this in the prime of life. At least I was diagnosed at 64, and I was past the prime of life, so it isn't quite as bad for me.
But hopefully, there might be a few more treatments which can help extend his life and slow the progression.
Yes, I live alone, and have a paid caregiver who comes in five days per week to assist me with shopping, laundry, cleaning, some meal preparation and escorting me to appointments. He's been with me for two years, and is very devoted, a Filipino whose wife also works as a caregiver. This is in addition to the new hospice team. But I don't yet require a nurse more than twice per week, but there are other therapists coming in each week.
I may soon require a nursing assistant more often for more personal healthcare, in addition to the others.
I have no immediate family left. I've got a few cousins, second and third cousins, but I never see them, but we keep in touch, sort-of---with Facebook. None of them live in Chicago, where I live---and I live about
2 1/2 miles directly north of Wrigley Field, in a section of Chicago called "Andersonville."
I'd like to see you have an Art Buchwald experience with Hospice. He was there so long they finally sent him home again where he wrote a book about that experience.
Thanks for the post. I was shocked (but not surprised) when I was told I had prostate cancer, surprised again shortly after that when I heard I had a number of mets to the spine. I got a 2nd opinion yesterday who informed me (thank you) that this was serious, and that it would almost certainly be fatal. (gak) But that has reoriented my thinking, I think appropriately. Take a breath. Yes, you can still do that. Check.
We're all shocked when we first learn that we have the big "C."
I think that you probably have plenty of time, and new tretments to help slow or even stop the progression. I had very extreme mets to the pelvic lymph glands, as well as bone mets, so I knew from the beginning that I was in for a long battle that I wasn't going to win.
Some of us last a lot longer, even decades, than others, but unfortunately, it appears that I won't be lasting very much longer, but one never knows................ I didn't even expect to last as long as I have, since the lymph system can spread the mets throughout the body.
Yes, I think that my take is to let the Hospital keep me on the main track, do as well as possible for as long as possible, and use that time to explore other options, while making them aware of whatever I am doing, like taking off for a bit to try xyz. But not to try to change the culture of the place, which is carefully delivering the standard of care. That's what I got from this 2nd opinion yesterday, and it makes me more comfortable to lower my expectation, or alter it, as regards my main oncological treatment. Dr 2nd said he would do no differently, and he is a co-investigator on a multi-site clinical trial.
My initial reaction is to relax, up my vitamin d3, think about metformin, and read on the topics of oliometastatic and MDT - metastatic directed treatment. Plus Cuba's drug program. Darn meant to get that done today.
I'm very sorry to hear of your state of health. You have been an inspiration in this group in your determination and fight in defeating this and in helping us by sharing your experience. I respect your decision and I commend you for it knowing you made it with fortitude and the best one at this stage. I wish you the best and pray you live in comfort and in peace. Please know are not alone. I look forward to reading your accounts.
Eric, I havnt been around long, but your posts have always been an inspiration. So sorry about the way things have gone, but hope you are being entertained by the staff in the hospice.
I wonder if you take a break from the treatments and then see how you feel. Maybe you will feel a little better with hospice then could pursue another treatment?
jls12, I'd hoped that I would rally and feel a lot better after stopping the Xtandi, but instead I'm feeling worse.
But there are too many other things going wrong with my body, such as an atrophied pancreas, an abdominal aortic aneurysm, and more.
There are new metastases in the pelvic lymph glands and other things going on, with increased uptake in the bone scan from shoulders all the way down to the feet. And there are other things, too numerous to list.
Sometimes, that's the way it goes. Even if I could withstand a few rounds of chemo, I doubt that it would help me very much.
My weight is down to 119 again. So I must accept that it is the last phase, and I just want to be as comfortable as possibe.
I'm sorry to hear all of that. It's really hard. I always have hope until you can't have hope anymore!! I think my dad may be on his last days. It's a shame. He and his wife had a nice life together and it ends up like this. They had so much to look forward to. It's hard for metro take.
Cericwin not only are you facing this stage of your life with courage, grace and serenity but you certainly have lived your life through these. Please keep writing. You have been and will remain an inspiration to all of us. You have helped me. Thank you. David
You are very courageous and mentally strong facing reality head on. You are an inspiration for me as I see myself in your place eventually with the very aggressive cancer that I have. My thoughts are with you.
Eric I still think of you every day and your courageous battle with APC. You are on your adventure in heaven and I am sure your pain free and happy. As I start my slide downhill I hope I will be able to meet you, my hero, in the after life. Don't look for me to soon because this old man is still fighting hard.
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Moving on with hospice care.
Critical statements about the current standards of care for treating prostate cancer.
Sick of the meds
