We went to see my husband cancer doctor and his urologist yesterday. My husband's ps a is up to 350, the cancer is much more aggressive, and now even in his femur bone. Doctor stopped the xofigo, he is going to try and get him in a clinical trial and also setting up chemotherapy training for us. Both of his doctors think the chemotherapy will be too hard on him. Urologist said he should get everything in order such as his will and ect. Said he probably has less than a year to live. I know not to take that with a grain of salt but it's still very scary. He has to get a second opinion before he can get into a clinical trial. My head is in the clouds and my heart is hurting, I just don't know what to think?? Thanks for listening!
Do not know what to think??? - Advanced Prostate...
Do not know what to think???
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Mamabakes994
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Hi Mama, We were told the same thing 14 years ago and it was upsetting. We did try to get our affairs in order but there are always changes messing them up. Our latest change in addition to stage 4 is Alzheimer’s and deciding which is a worse death.
It’s helpful for others to post your husband’s pCa history on your home page.
I did in the beginning, I am so sorry, I am a senior caregiver and know how horrible Alzheimer is.
I'm so sorry to hear this. I'm not quite sure what "chemotherapy training" is. Chemo is hard on the body, but if he's in a lot of pain from mets, might help. Hang in there ....
What is his treatment history?
Reviewed some of your posts.....I do not believe you have had genetic testing to see if there was possible treatment options there. If you have not had Provenge, that may be an option...Someone posted earlier on the APCEDEN vaccines they were on for PCa....With bone mets, hopefully he is on Zometa, or Xgeva /Prolia...if he is put on Zometa, STAMPEDE trial showed improved survival of 22% by adding Celebrex to Zometa...
cancernetwork.com/asco-geni...
A few options to run by your MO...some may be doable before a clinical trial...
Best of luck....
Don Pescado
Yes, he had genetic testing when he was first diagnosed.
what did it show??
Welcome . I’m so .. sorry ..The psychology of this disease is brutal . I don’t think it helps for the doctor to put an expiration date on him. That’s like telling yo7 to give up . Nothing will work . Chemo might . I’m not informed properly to give medical advice . Other can answer what to . I’m on a trial with success.. That might be good to .. do next . APC is a whirlwind . Try toke you head up and love him today . Love and compassion are one cure . The best medicine . W3 have many members that where told that they’d be gone long ago . I’m a yr past my original expiration date given . Doctors don’t know it all . There is a higher power in everything .. I believe and pray for miracles ... now for your husband . May God be with you both in this nightmare . My urologist told me 5ha5 there was nothing that I could do to prevent pc putting me under by now . They make calls on experience and stats . You don’t have to submit to either of those dismal prospects .. Don’t give up . Take extra special care of yourself the caretaker in all of this . He needs your strength. My wife married me with tubes into my kidneys and a foley . I was a mess..They gave me 50/50 chance to survive the first round of treatments . Now I’ve had no visible signs of pc for 4 out of 41/2 years living with APC . We had no honeymoon . My wife love saved me .Shes my reason to endure . So ,surround him love .no matter what happens today is important . Please keep advocating for him . Together you will do better than that drs projection . I know it sticks in your head . But get it out . I’m Scott in Az .. you are not alone in this . We can all relate .. finding anyway to stifle the fear of the unknown will help you both . Peace to you in this storm . I’m Scott from Az .. welcome ...
Mamabakes994• in reply to
I do love my husband very much and try to do everything I can to help him. I know it is up to God when we leave this world. And everything is in his hands.
• in reply toMamabakes994
I know that you do . Obvious by your presence here ..He has you ..and that is a lot .. this is the test of all test for us all . We with love and a strong partner are very fortunate not to go it alone . I had a rocky road for a couple years of treatments and recovery . I pray and pray .. Not just leaving but the here and now are in his hands as well . Peace .
• in reply to
LuLu I too am in the midst of some big decisions. Can you please share what you are doing that gives you life?? What trial are you in that is sustaining your life? Please share Many thanks and God has blessed you
• in reply to
My salvation is a deep love from my wife that I was given at the same time as APC . Love as we know is the answer to everything . We suffered much for two years . I got our 3month 3lb puppy lulu back then She is close to four now . Now 12 lbs she Heals me unconditionally each day . So I’m surrounded with love at home. My trial drug Tak-700 has been halted . But I’ve had good results so they can’t cut me off it .. I’m on cruse control until I am not . Living in the moment is crucial to sanity . My father was a National Park service ranger my entire upbringing . We lived in national parks . He taught me a love of nature that is instilled in me ..today ..We spend time outdoors as much as possible ..Making decisions is the hardest part of this voyage .. we must follow our own thoughts and try to heal ourselves anyway that we can . For me it a spiritual healing that is also necessary .. I pray constantly .. good luck in big decisions .. Take care ..Scott🌵
Shooter1• in reply to
What would we do without a loving a wife as caregivers??
Best of luck to you. Getting set up with PCP in 2 weeks with VA and then middle of next mo. here locally. Moving and changing all your Drs is tough.
Doug in Idaho.
• in reply toShooter1
Well Idaho Doug, you sure changed gears Hope that you all are having fun up there.. we ‘re loving Prescott right now . please let me know if you’re in our area for any shootouts ? Keep the train on the tracks conductor ! Peace dear Sir to your wife and that cute grandson.✌️
What Lulu said and don’t despair. Last October my Oncologist thought I had days to a couple weeks left at most. My first meeting with oncologist included meeting my hospice team as well. My wife extremely freaked by hospice element ... me stunned. Hospice and oncologist told me to get my affairs in order and draw my loved ones near .... and do it right away.
Well that was 8 months ago and I’m still here. Taking a licking but still ticking.... my ultra grim bloodwork back to normal ... psa and T undetectable.
The point being PCa is quite variable person to person, you determination should not be underestimated. Doctors shouldn’t say how long because of this. Hang in there , both of you are strong ... you got this ... we got your back.
Best wishes and thoughts
• in reply toKaliber
“ Determination “ and the will to survive... can be tremendous factors for some of us ..just as willing yourself to death I believe is also possible .. just goes to show you that you can’t believe everything that you hear .. I’m happy that you’re here Kaliber and that that onco was wrong . Later..
My husband was diagnosed in august 2017, ps a 199.78, Gleason score 4+5, cancer in his bones and lymph notes. Started him on lupron, casodex. Then September 2017, he started with zytiga with prednisone and xgeva shots. The lowest his ps a was 7 in March of 2018. He had to stop the xgeva at that time cause he was having problems with his gums. Then in September 2018, the oncologist added casodex. January 2019 his ps a went up to 86, more bone scan and ct scans, cancer getting worst. He stopped the zytiga and carried and started xtandi. Stopped the xtandi in March 2019, started xofigo soon after. Did more testing, first his ps a went up and then down and a month later went up to 309, went thought more scans and test. Cancer is very aggressive and much worst, ps a 350. Going for a second opinion on Tuesday to see if he can get into a clinical trial also going to chemotherapy training.
Also back on xgeva cause his bones are getting very weak.
• in reply toMamabakes994
The darn bone stuff that we face is surely not much fun . Whoohoo!
• in reply toMamabakes994
🙏
I understand how you feel as I have been there a few months ago when my husband was given 3yrs expiration date. But dont believe your doctor’s projection because we’ve seen so many warriors here who are way past their so-called expiration date.
Stay strong. Have faith. Continue to love your husband unconditionally. And never ever lose hope.
Now for the next treatment option, chemo might help your husband as it has helped mine. Side effects were manageable and pains now are somewhat non existent. Zytiga worked for us for 7months only before moving on with chemo April of this year. PSA also dropped by about 70% but we have yet to see pet PSMA scan result coming this last wk of August 🙏
Offered a prayer for you both so you can be guided with your next treatment decision. All the very best.
Have you looked into high dose testosterone and Dr. Bob Liebowitz?
see link to video below.
compassionateoncology.org/v...
• in reply toGeorge71
Someday I might do it! Thanks George ! 🌵
Its great to see such a strong team fighting so well together. Remember that all clinical estimates are stats based on current conditions IF YOU DO NOTHING MORE. You're not going to do nothing more. Instead you are going to keep fighting together using any tool you can find. Many others here were given limited time and are still here long after the Dx
I'm a year and a half since a weeks to 6mo statistic judgement by first UO. Listen to the ones who said he'll no.
2Dee
• in reply to2dee
Hell no! Can’t listen to dismal stats .
Mamabakes994 Hi!
I don't really have any technical medical help or suggestions as I am new to PCa (3months) and only on ADT. But I wanted to at least offer something... I found it hard when "the experts" find those words so easy and play God. I have asked many questions in the last 3 months of my Uros and Oncs plus family Dr. They are on tracks and they want others on the same tracks. Just like a kite, "I fly against the wind". The first thing for me was to believe! believe that there is a door somewhere where this PCa came from, I know it will be open for me to take this away, believe that you are in control of your brain and not anyone else. Believe with every cell in your body, your whole body that everything you are doing is and has made you and your wonderful husband better, that every single day however slight everything is getting better. Don't think that the Specialist has all the answers, they are learning at our expense and that's a fact if they had read what there is on this site they would be much more informed to do a better job. So paint the picture your brain needs and wants to help your body with everything that comes along. You have a choice, decide what outcome you want, believe it will, because if you don't you are believing the opposite. Believe whatever your lovely man is taking will help him... is helping him.
Lots of dam good advice above for you Mama
Alan
• in reply toalangeorge
Wonderful and positive message .. Thanks ☝️
alangeorge• in reply to
Thank you so much Lulu700... Wonderful and positive is a choice no matter the situation. Believing in people when they struggle is actually free the cost is just to care.
Alan
• in reply toalangeorge
Poetic truth. Thanks
I can't understand why any doctor would say such a cruel thing to you and your husband, I am so sorry that he has given you both such a knock. On this forum there is such a wealth of knowledge to help pick you both back up again and also a huge amount of understanding of your situation, which will give you greater energy to stay positive and fight on.
Scott has spoken about his faith in God and how he finds peace through prayer, God is not the one calling time on our existence here on earth, infact he holds the opposite view.
I too pray to Jehovah ( that's his name ) he has given me peace and strength to continue to fight, we will pray for you too.
If you have a minute read Psalm 34 vs18, talk to him.
Everyone here sends thier love to you.
Philip
• in reply toLettuce231
🙏. Peace through prayer and faith in God .. Thats all I’ve got .. take care friend .. may god bless you today and everyday ..
We all have an expiry date ... but that information doesn’t come with a medical degree.
Read these posts
These warriors keep fighting .... they keep trying ... and sharing priceless information and first hand experience ... and they
keep us carers going to boot !!
I feel there are more options for your husband
I’m praying for you both🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽
• in reply toBebby1
Hahaha . I agree ..excellent ! 🙏
Dear Mama, "let not your heart be troubled"...I have APC with multi mets with PSA at 126. With the right treatment, I had Zytiga and ADT and Zometa...My PSA is down to 0.41. There is Hope. Having faith and getting a good oncologist is key. Will pray for your husband. There is power in prayers. God bless
• in reply tobellyhappy58
Keep the faith !
I am so sorry to hear this. Doctor's make me sick. Hubby was diagnosed in 2016 with a small lesion in pelvis and one in rib. Went on 3 monthly hormone shots. 18 months later, went back to same doctor who said he had a bladder infection. Went for a second opinion and discovered that he was then stage 4 with mets. Was given a 20% survival chance. We then went to an Oncologist. Started with PSA of 29 and 9 months later after Taxotere and Cabazitaxel chemo, PSA was 48. By December they stopped chemo and put him on Zytiga. At the same time I discovered an ACT 225 trial here in South Africa. He was accepted straight away. He had extensive bone mets. PSA came down to 2.9 in March. It has risen again BUT his bone mets are now down to one vertebrae in the spine and a small one on the pelvis. The others in the skull and spine are gone. The Professor said to not to worry about PSA anymore due to the decrease in bone mets. He is still on Lupron injection but they stopped Zytiga because it is no longer working. He has another scan in September to see what the 4th ACT 225 injection has done. We are praying that it will sort out the last of the mets. Oncologist may try Xtandi after the next scan and possibly spot radiation on the spine. We were told by one Oncologist 2 years, a Urologist 5 years but I have also heard of so many people living with Stage 4 for many years more. There are constantly new treatments coming out. I would definitely try and get on a clinical trial somewhere. And pray everyday !!!! Love him as much as you can. This journey is a tough one.
• in reply toLdb01
Wow! 20% how optimistic.. ! Glad he proved em wrong . I think alot of drs skipped their training in compassinate speak to their patents .
Hi Mama, My husband was also told the same, he's still hear. It is so scary, I really believe that the will to live, lots of prayer has kept us both going. We are now in the process of getting ready for a clincial trial. His bone scan, ct scan,PSA etc. were not up to date. All tests must be with in twenty eight days for the trial for you to qualify.
We are hoping to hear soon. Maybe by this coming week. fingers crossed and praying that he qualifies.
Keep positive, as hard at it is sometimes.. I have to keep reminding myself not to give up hope.
Never give up and never give in..
Sincere wishes... Lynn Pa.
• in reply toronnie1943
I pray that he’s gets in and it works ..🙏🙏🙏🙏. Great that he has your love.☝️
ronnie1943• in reply to
HI Lulu700.
Husband Sam and myself are in shock! After going through all the up to date blood work, scans etc. pet/cat scan for PSMA... To qualify for the Lu-177 trial .. Ii was so worried about Sam not having the PSMA, didn't cross my mind that he would be denied. Sam qualified, but we got the call today that Sam is one out of the 66% that gets denied by the drug company.. We are just devastated, we can not afford to travel out of the country for treatment. .. Lulu700 do you happen to know of another trial? Do you know the name of the drug company that offered this Lu-177 ? I never thought to ask anyone.
Would so love to hear back from you when you get a chance. Hope all is well with you!
Sincere Best wishes. Lynn Pa.
• in reply toronnie1943
That is a let down . Why was he denied? I’m sorry . I’m no expert ..ask the bunch and someone will know .. another window will open 🙏.
ronnie1943• in reply to
Thank you so much for your reply....What we were told by the coordinator's that's st all this up for us., That there are no guarantees that the drug companies will except you even if you qualify. We still are trying to come to terms with this let down. Going to see the oncologist tomorrow...
Thank you again..never up hope and never give in.. 🙏🏻
• in reply toronnie1943
Good luck at the doctor .. No guarantees for any of us ,true..There must be something to be done . Present a post with your questions ?? ... Many have knowledge as what to do next .. coordinators aren’t gods ,neither are doctors although some think so .. Many prayers 🙏
ronnie1943• in reply to
Thank you, I agree, so many people have given just a few months left to live and are still here years later!!! Only the Lord can predict when we shall pass.
I will get a list together and post all my questions. I am 75 and was given an iPad for a birthday gift. Trying to teach myself... not to good with all this technology,
Thanks again for all your kind words.
Prayers for you too! 🙏🏻
• in reply toronnie1943
The I-pad is fascinating. Once you master it you’ll be fine. We can’t listen to dismal drs reports or stats . The will to live and endure can’t be underestimated . God bless you both.🙏
ronnie1943• in reply to
Hi, Thanks again.. Your posts are always so uplifting. They give me back my hope. I too believe in a higher power...pray everyday. 🙏🏻
Went to see oncologist yesterday, He was disappointed also that Sam was not chosen for the Lu-177..we are technoaly still in the trial, next treatment Sam will be put on will be Xtandi.? Fingers crossed..
Sincere best wishes to you and your wife. Keeping you in my prayers. 🙏🏻
Lynn.
• in reply toronnie1943
In our hardest times prayer is salvation . We beg for mercy and miracles . The hell of being at the behest of APC is a tremendous psychological burden to patient and partner ... you must take special care or your own health in order to give him the help he needs now .. my wife’s unfaltering caring and love is what pulled me through hell . It took a tole on both of us . As you already know...Love him .. How do we find strength under this vail .. for me it’s only in prayer and good positive people around you . No matter what the doctors say you are going to be there with him all of the way . He is blessed to have such love . I’m Scott and my wife is Shahrnoosh ... We are praying for both you and your fine husband ..... You aren’t alone on this path .. This truly is for most of us “the “ test of all testing ..... May God give you strength and mercy.🙏
Hi Mama, like many on this forum I was handed a pretty dismal diagnosis...I've had surgery, radiation, ADT, nothing seemed to stop the progression. But there are so many available treatment options outside of clinical trials that finding the right medical team is just as important as the treatments themselves. In my case, I had bone mets and a PSA doubling time of 6 weeks; and despite that condition, Erleada was eventually prescribed and within 3 months, the Erleada drove my PSA down to .05 and it continues to work after a year of taking it every day. I'm not saying that Erleada is the answer in your husbands case, but what I am saying is that there is hope; and never forget the power of prayers.
• in reply to
🙏
ronnie1943• in reply to
Hi CRK2... My name is Lynn, my husband name is Sam... He's been fighting this disease for ten years, many bumps in the road, but still doing o.k.
Happy to hear the treatment is working for you...never give up and never give in.🙏🏻
Sincere best wishes.. Lynn Pa.
• in reply toronnie1943
Hi Lynn, thank you for your reply. 10 years and still in the fight...Sam is a true survivor and you are right there supporting him. I am grateful for the support my wife provides me as I’m sure Sam is also. It’s not easy, but I’d rather be on earth with my family rather than pushing up daisies at this point in my life. I’ll put you and Sam in my prayers.
ronnie1943• in reply to
Hi CRK2,... Sorry for the late response.. Sam and I are still trying to wrap our heads around the news that we were not excepted to have the Lu-177 infusions...We are still a part of the trial but Sam will be on Xtandi instead. It was quite a let down after all the red tape, up to date scans, all blood wk. scans etc have to be within twenty days before they will do the PSMA scan. We live in the suburbs of phila, and went to Gettysburg, pa.for the scan. Came home, waited to see if Sam qualified, he did, but we knew there was a 66% he qualified bit was denied the Lu-177. We still are bummed.. We had such high hopes. The doctor said he was also disappointment.. Well, we will go with the Xtandi and the oncologist said when it stops working he will look into other trials.
.. It's so very helpful having people like you and your dear wife and so many others on this forum all here for one another...also that know what we all go through.
Sincere wishes for you and your wife. and sending prayers.
Lynn
• in reply toronnie1943
10 years is a big marker . Wow! APC is a life long adventure. It teaches us how precious life is . 🙏
Please post in his profile so others don't ask for it again. Has he seen a Radiation Oncologist?
Also was told to get will in order and etc. That was 2 and a half years ago. Really need to redo it now cause it is out of date. We should all have up to date wills, pca or not. Maybe try one cycle of chemo to see what it does and how he handles it? Hope you can find something to turn this around. Best wishes.
All I can say is I know that sick scared heart breaking feeling. Every wife or companion
Hopes that they never hear those words
Get affairs in order. I hate knowing about this disease and that men fight so hard to live
And also worry about their love ones
I too believe God is right there. 🙏
We are all sending our most positive thoughts to you both.
No dr can say how long! Ditch that one!!
My husbands PSA is 1300 and not once has any kind of timeframe been mentioned
Individual illness - how all of it goes...
Best wishes !!
Check out the book: How To Starve Cancer
I support TomNew62. Read the book by Jane McLelland. Highly motivating. Also I have a copy of her MetroMap V2 that is customised to PCa. Email me for a copy. anabcofprostatecancer@gmail.com . Get an integrative doctor to help you with it.
Also try to get into a PSMA Lutetium-177 trial if you are avid to ga68 PSMA Pet scan.
Thank you all for your response, I greatly appreciated all of them. Love and peace to all!
I read that someone had succeeded in reversing a cancer by taking Panacur. Do not have the reference - apologies.
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