My worries about CKD are now secondary - Early CKD Support

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My worries about CKD are now secondary

RickHow
RickHow
40 Replies

I am 69, male, stage 3b. In 2017 one kidney was removed due to a stage 1 cancer tumor. Then I was labelled as CKD. Since then I have done on the recommended things about diet, exercise, testing, etc. And my egfr has remained stable, or slightly improved. And this website has given me so much information and hope and sharing, it helped a great deal. Now I had a routine ultrasound to see how the other kidney looked, and other organs (to see if cancer returned. At stage 1 there is only an 8% chance it comes back). Yesterday I found that the cancer has returned, to the bones, in four spots. Three in the pelvis, one in the spine. I am one of the 8%. There are no effective treatments for metastatic kidney cancer, no chemo, etc. There are one or two new pills that help to slow the growth for a short time, but at the cost of about $18,000 a month. That is not a typo. $18,000 a month! There is immunotherapy which is given as a patient in the hospital but it is so toxic and only helps for a very short time, that the oncologists does not recommend it. So I will be in palliative care with radiation for pain as required. Basically the cause of death is that the bone cancer makes you increasingly anemic. So my message? I have spent almost 2 years constantly concerned about the CKD, what to eat, drink, exercise, and worrying. All for naught. To all my friends on here with CKD. Remember to enjoy your days too. Not to be consumed by constant worry and what if's. That can easily become wasted time, because in the end, as I have now learned, what will be, will be. And now I will go have a big beef steak, with all the foods I have avoided, and a beer for the first time in almost 2 years :) :). And think to myself "take that CKD".

40 Replies
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MAS_Nurse

Hi RickHow and thank you for your post. I am sorry to hear the results of your routine ultrasound scan was not positive news. You will be well cared for by the palliative team who will provide you with treatment and support. They are very experienced in pain and symptom control to enable you to have a good quality of life. Do enjoy your days too. Spend them doing things you enjoy and with people you enjoy being with. Please remember that you are not alone. We are here on the forum to listen, so keep posting and take care. Please let us know how you are doing. Thank you and best wishes.

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RickHow
RickHow
in reply to MAS_Nurse

Thank you so very much. I will do my best to monitor and participate in the forum so I can offer words of encouragement whenever possible.

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Celtic

Rick, I’m so sorry to hear this, especially when you have worked so hard to do all the right things. I have just a sole kidney and I empathise with that feeling of the need to try and ‘get it right’ to protect the remaining kidney. I’m quite shocked to hear of the apparent lack of available treatment for this metastatic condition. My hubby has advanced metastatic prostate cancer to the bones and lungs but at least there is medication/treatment available in an effort to try and stall the situation.

What a kind soul you are in spite of everything to still consider us all here and pass on your wise advice not to waste our days worrying about the “what-ifs”.

Enjoy that beef steak and beer and we wish to hear of many more such indulgent forays in the future! Do keep in touch.

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RickHow
RickHow
in reply to Celtic

Yes, the doctors told me that most all cancers that spread or come back, have treatments like you mention. To stall (and in rare cases cure) cancer that has spread (even to the bones). But that kidney cancer just does not react to these treatments, other than levels of radiation to temporarily ease pain. If for example it came back to the liver, or say the lung, then surgery can be a great help. The area of that liver/lung could be surgically removed. But in the bone there just isn't anything, especially in the pelvis.

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Bunkin

I’m so sorry to hear this! You are completely right though. I’ve thought about this over and over, we work so hard to keep this kidney stuff at bay, then something else comes along to knock us down. Do know that you are in my thoughts and in my prayers. ❤️

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RickHow
RickHow
in reply to Bunkin

thanks very much.

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orangecity41

So sorry to hear this. Prayers are with you. You have been a big help to us on CKD.

Thanks for sharing.

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RickHow

thanks for caring

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SN23

Thanks for sharing. My prayers and best wishes to you. Still hope and pray that there is a good outcome and a way forward.

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RickHow
RickHow
in reply to SN23

Thanks. People on here have always been helpful to me in discussions of CKD. And kind. And I have always tried to be the same in return. And now that I have terminal cancer you probably can't imagine just how much a nice post like yours to me, means. It brings to my life what is tragically missing at this time, which is a moment of caring and best wishes.

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SN23

🙏🌺 you are in my thoughts and prayers. And I am sure you have every ones prayers with you. Please do not feel alone and stay in touch🌺

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RickHow
RickHow
in reply to SN23

Thank you so very much

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curleytop1

Hello RickHow,

I so admire your wonderful courage in telling us your sad news. I regard your posts as a tower of strength for those of us who struggle to understand the complexities of CKD, as you always seem able to explain new posts and reply to them with such confidence and clarity. I am writing this to say we will all miss you so much and hope that you have a long time to enjoy everything you want to do for as long as you can.

I just want to say thank you - Curleytop1.

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Hul1
Hul1
in reply to curleytop1

Hi Rickhow, I’m really sorry to hear of the sad news you have shared. I have only been a member of this forum for a very short time - and you have answered my questions in detail and always found your posts informative. I get what you have said in this post - I think quiet a lot of us let this CKD control us and forget to enjoy life a little. To be honest at present I feel a bit of a fraud because I have no symptoms of CKD unlike some of the members here. When someone shares news like you have - I’m unsure what to say - - but I just want to let you know I’m sad and feel for you - so without further a do - enjoy your steak - have a nice

Beer ... and I will have a beer and raise my glass to you .... all the way from across the pond (Uk) . Cheers Rickhow 🍻

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RickHow
RickHow
in reply to Hul1

Thank you for the lovely words and sentiment. But especially thank you for caring. Yes my news is unfortunate. Yesterday I was told to expect perhaps 8 to 10 more months. I do not share my problem or my results for pity. I share them so that those, who exactly like I did, worry and waste all our moments about things CKD related, and fear the worst and imaging the worst all the time, to try to stop it! There actually are worse things. And don't waste what days or years we have regardless if CKD or Cancer or whatever without doing our best to live life to the fullest. I was guilty of this. So I share my example for that purpose, to say learn from my life. And again, thanks for your words and thoughts. They mean soooooo much. Rick

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RickHow
RickHow
in reply to curleytop1

Thank you so very much. This forum has helped with a lot of good information and sharing about CKD. But the best part is the wonderful and caring people, like yourself, who are on here and keep each other not just informed but encouraged. Your post means a lot to me. Rick

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Margie5967

Rick, I am so sorry to hear about your diagnosis.

My prayers are with you.

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RickHow
RickHow
in reply to Margie5967

Thanks Margie. Knowing people like you are caring about me helps me during the times of my deepest depression. Thanks

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Lynndeb

I've just read your post, and I wanted to tell you how sorry I am to hear your news. I agree with Bunkin, we work so hard to keep our kidneys as healthy as possible, but what else could be lurking in the sidelines... Rick, I hope you give those kidneys absolute hell! Enjoy those steaks and fries, washed down with great beer! And as SN23 said, do not feel alone, you have us here to listen... with love, Lynn

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RickHow
RickHow
in reply to Lynndeb

Thanks so much. At such a time as this you have no idea how much it helps to have people who care and take the time to say so. I go for spinal surgery on Thursday (the cancer has damaged the spine so much it needs braces installed to hold me upright). Then next month they will do a hip replacement (again the joint of leg and hip is so destroyed by the cancer, it won't last much longer). Neither of these are cancer treatments, just treatments to keep me mobile. I will be thinking of your kind words and caring through these struggles. You know what? The beef, the beer, were all great. But I had become so used to my "kidney diet" that is felt odd having such things, lol. Thanks again.

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Lynndeb

You're very welcome, and I'm hoping the beef and beer begin to get better and better. Never forget how strong and brave you are.

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HisLittleOne

God bless you and be with you and give you comfort & peace...

Jesus said... “I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die. Do you believe this?”

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RickHow

Thanks for thinking of me. It overwhelms me the support I have from people on this forum. We have shared our CKD journeys and our lives. Thanks much. Such support gets me through difficult times.

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LisaEP

Rick I’m so sorry to hear this. I’ve fond your posts really informative on this forum. I wish you all the very best and hope you manage to defy the odds.

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RickHow
RickHow
in reply to LisaEP

Thanks so much. All of us on this forum are more to each other than just words on a screen. We have shared our CKD troubles and opinions. We have offered each other encouragement. And you, and others, have given me messages of support during my current, and likely final, health battle. It probably is hard to understand how much I appreciate these types of messages of support. I have very limited family (not in this area) and sometimes you can feel alone in your thoughts and worries. Then a comment comes such as yours and it just turns your day around and you realize there are people who think of you. Thanks.

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LisaEP
LisaEP
in reply to RickHow

I’m so glad you find some comfort in these messages. It was genuinely heartbreaking to hear your news and I wish you all the very best.

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SN23

Yes you are in our thoughts and prayers. So hope you are feeling better. Sending best wishes and strength🙏

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RickHow
RickHow
in reply to SN23

Thanks much. I'm receiving radiation treatments, not to cure, but to lessen discomfort. Too early to tell if they help. But for sure, words of encouragement and understanding from posts on here are a definite help. Thank you

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SN23
SN23
in reply to RickHow

🙏🙏🙏

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SMM62

Stay strong - you are brave. All the best and will keep you in my thoughts and prayers.

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RickHow
RickHow
in reply to SMM62

Thanks so much. You would be surprised (I was and still am) that devastating news while at first a shock to the system, you kind of adjust to and accept. You can spend your time left all worried and concerned about when/where/how. Or you can choose to carry on the best you can. I pick the carry on. But that is not say that naturally there are times of worry. But in those times I make myself be busy on some task or chore or doing something to be enjoyed. So believe me reading kind words is a help too. Thanks

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Redear

RickHow. I am really sorry to hear about your DX. Yet, your words rang true for me at this point in my life and I appreciated them very much.

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Doodle2

Hello Rick,

I am new to this page. I have just been diagnosed with stage kidney disease. So only a toddler on the scale. I was a nurse and remember all the stuff I learnt and the patients I met...already deciding I have cancer or another blow towards an early heart attack. Classic. So amazing to find a group where people actually reply to posts.

I am guessing you are recovering from surgery. Your letters are beautiful and moving. Wherever you are, whatever you are doing now I will hold your name in prayer.

Bless your cotton socks, my Gran used to say.

What a brave and thoughtful man. So grateful that I saw your posts today. Thank you.

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RickHow
RickHow
in reply to Doodle2

Thank you for your heartfelt post. You will find this forum not just helpful with knowledge and experience of others with CKD, but just full of people with warmth, heart, caring. Yes my health history has not been kind to me for a while. Kidney cancer in early 2017. Kidney removed in 2017. Diagnosed CKD Stage 3b. 2019 cancer returned (kidney cancer had spread to bones). Had spinal fusion surgery in April (major operation) cancer had taken 2 vertebrae. . Had 2 weeks of radiation in May. Now just had hip replacement surgery due to tumor in right leg. Still have four growing tumors in pelvis. Will likely have radiation to leg to try to slow any cancer cells that escaped in hip surgery. Next is to try a new cancer therapy where you take pills (immune therapy) of one drug, while at the same time receive monthly IV of another drug (immune therapy). Still deciding if I want to try it or not. The side effects can be quite toxic. So I debate extending the quantity of my life while destroying the quality of those additional months. Through it all this forum, its members, have raised me up on dark days, enlightened me with their experience and knowledge, and most of all showed heartfelt caring. You will like it here.

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newbie56

Dear Sir,

I've been skipping around everything on HealthUnlocked for quite a while, but don't recall seeing your name or reading your post, til today. What an amazing man of courage you are. Your fine example will become legendary.

I'm sure you would prefer to be ordinary, but that's not the case. You have given excellent advice to all here, which I appreciate and intend to follow.

Yes Sir, you've done a wonderful service to those of us with ckd or any other health concerns.

RickHow, I hope you continue to lean heavily on GOD's promises, which truly comfort in such times. Many wonder why bad things happen to good people, in fact there are books with kind and thoughtful words to help. These were written by mere men but can be helpful. On the other hand there is a record of God's own "words", loving counsel, direction and enlightenment regarding the future which are infallible, worthy of our attention.

Please consider the inspired Psalms which soothe weary hearts. Psalm 37 is my personal favorite. It paints an accurate picture of the future for all of us. All mankind needs the hope we can find there.

Many verses in the bible can lift our spirits. “He will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.” Rev. 21:4

My heartfelt prayer is for faith to sustain you, Sir.

Agape

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RickHow
RickHow
in reply to newbie56

Thank you for your heartfelt note. It is the advice and encouragement of so many on here, to me, that help me during this troubled time. It bolsters my spirit. You wrote something that I honestly share with you happened to me too. Upon hearing of my CKD I did NOT blame anyone or anything. I did NOT question, why me. However upon hearing of my terminal cancer, one of the first reactions was, as you said, "why me". Oh I am not some wonderfully pure, perfect person. But I've tried to live my life as being a good man. To do right even when wrong stares you in the face. And then I see people around me who do not live to that standard. Who may lie, cheat, hurt others, with no remorse. I am sure I have done things in my life that looking back could be judged as wrong. But nothing of a grand scale. Yet I see so many of the "bad" not get harmed, while a person such as myself must face tragedy and punishment of terminal illness. So it makes one question beliefs. But in a short period of time I learned quickly to sit and think of this does me no good. It only enhances my anger, my emotions, and brings me no benefit. So I try to block it from my mind. But again, as I said, I'm not perfect. It is in my mind. But I feel I have lived my life by one set of standards that I thought proper, why change it at this point.

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newbie56

Yes indeed, Rick...the fact that innocent people suffer has turned many away from GOD... Although we may not see a way out of our problems, our heavenly Father can help us to endure. He may even do the unexpected.​—1Co 10:13.

Remember, "the swift do not have the race, nor the mighty ones the battle, nor do the wise also have the food, nor do the understanding ones also have the riches, nor do even those having knowledge have the favor; (why?) because time and unforeseen occurrence befall them all" Ecclesiastes 9: 11

Hoping you have a productive day doing something you enjoy.

Agape <3

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RhwnSutchess123

So true....and it really doesn't matter what our final demise is...we can get busy living...or get busy dying....not today !!...Enjoy your Beer...My Heart is with You....

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RickHow

THANKS. The ironic thing is my latest kidney test numbers show VAST improvement compared to where I was before the cancer! After 2 years of being egfr 38-4x stage 3b, my last test last week has me at the high end of stage 3a and just slightly missing being stage 2. All those months of worry about kidneys were wasted time I should have spent more uplifted. So now with that lesson learned I face the cancer just as you said, one day at a time. It reminds me of tv commercial. A nurse is helping an elderly patient to bed. The patient know she will die any time now. But the nurse tells here "not today...not today". That is how I live, "not today...not today".

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RhwnSutchess123

Love it !!...none of us know our demise...could be an airplane crash or car accident...one thing nice about a terminal disease is that we are pre warned...to take the time to concentrate on the truly important things to us...to take the time to let others know how much they are appreciated and how good a Beer tastes...very few people die with that opportunity...I feel having kidney disease has been a gift in a way...it has given a new definition to my life I a strange way...there is a documentary on Netflix that has a unique twist on how the mind and body work...a nice perspective...if you are interested in watching it ...it is called....The Secret Law of Attraction....Best wishes for you..you sound like your soul is sad but in a good place...

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