Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc. (Part 6)

Dear Sue & Antonia,
Sue, I am so sorry for your grandkids (and your daughter) in the sudden loss of their pup. We have a wonderful dog Lucy and I know how much a part of the family the family dog is. I'm with you on the Christmas giving, it does feel especially good to give to those kids that won't be getting what all kids should be getting at this time of year...lots of wonderful things and no worries...
Antonia, I just don't know what to say about the fact that you will soon be selling your house after all you have been through. It's something I've thought about, do we move together and make some new memories or stay put in the house my husband loves and think about it later. It's not an easy decision.
I think of you both often and hope you and your families will have some peace at this special time of year. xoxo Suzanne

Susan, ( myman) you have always been so supportive to every one here, Antonia (moon) can't believe that you've got to move during this time, it's enough to deal with, my heart goes out to you. Sue and all I'm not doing good tonight, made it through his funeral but reality is starting to set in. How lonely and how much I miss him. I hope to get through Christmas.

Hugs to all and thanks to all,
Cathy (enjoylife)

Thank you so much Beth for your words of comfort.

Thank you for your kind thoughts Suzanne (mrs.george).

Sue, thinking of you. I think it is you that has Lupus? I do too and it's taken its toll this year.

Love to all if reading.

Hugs, Cathy

hello to all been quiet here The corner had a bad 3 weeks.Going to take awhile to reset ourselves---grief has a moving floor. hard to get used to standing again.But there are strong people in the corner.Maybe the Beatles lovers get together will help--getting together as a group seeing each other as friend and fighter I think will do good for all God bless. NEPOL --ps. i'll bump this drivy road

Thank you Beth ! Hello to everyone reading. It was a hard day today as I took gifts to our favorite urologist, his wife who is his nurse and their receptionist. This was in our way of thinking the only Dr who went above and beyond to do every single thing he could for Dave. It was hard to go there with out Dave .💧
I am so happy Beth the Xtantdi is working for Gary . Hold him tight and enjoy your Christmas . We never thought last year was Daves last . We were already thinking about this Chistmas back in July! I don't say this to be a downer but I say it because Dave and I thought there would more days and years . Pc is a sneaky time stealing theif and you just do not know. Even the receptionest today said how shocked she was at Daves passing. He husband died in 20 14 of pancreatic cancer at his time of death he weighed a mere 82 lbs . Dave was 187 lbs .I thank my lucky stars we were able to keep ahead of pain as she said her husband suffered excruciating pain. Dave always looked healthy and that is what got him to stage 4 PC to begin with. Looked healthy so nurse practitioner wouldn't do screening!!
Thank God the will to live is strong in Gary. You have to have that and you alwaysvhave to have

Had the best Christmas that is possible at this time. Dads's tradition has been to do a huge Christmas Eve feast of appetizers and snacks, with lots of lights and candles sparkling. THis year it is not possible so we made an afternoon of the same, bringing it all to his house. He had a second transfusion which sadly did not reboot his energy levels. We were so hopeful after 11 hours of blood transfusing but he is still very tired and weak. Appetite is poor. I wish I knew how long we had ... I dont know if his quiet manners now are a result of depression or the cancer or impending doom.... I adore this man... he is so beautiful.

Has anyone had experience with the blood transfusion not picking up a patients energy levels?

Mydadismyhero -- my husband has had two transfusions so far. We also had high hopes for improved energy, but we didn't really see it. Maybe a little. I think it is probably because his numbers were so low, all the transfusion did was take him from dreadfully anemic to merely severely anemic. In other words, maybe we should just be pleased we stopped things from getting worse, rather than hoping it went all the way to actually making things better. I would guess that if your dad was getting transfused for 11 hours, his numbers were also really really dire, so maybe it's the same situation.

I also share your wish for some guidance about how much time to expect. I know doctors can't tell you what they don't know, but I know they know more than I do. Even a rough sense of what's going on, a wide range of what is likely, would be helpful.

But maybe not knowing means we still try to make the most of every day, as if we assume the worst, but still leaves room for hope?

On that note, know that I'm hoping for the best for you and your dad

BETH -- don,t know what link of robertc you clicked on the one on the top has inclusion/exclusion criteria in it. wish I knew how to turn it blue... there ought to be a button!!! God bless --NEPOL

Beth-- had a tert. 5 when i sent my slides for 2nd look (Epstein) The big E SAYS IF 5 IS MORE THAN 5%the 3 becomes a 5.#**#*#!! Glad I could help. robertc might know more or where to look. That man is always looking we are fortunate to have him helping and posting.. Have a happy new year.--NEPOL

Good morning robertc--it's morning in Ca. thanks for the hot link & name I am sure Beth will chime in with gratitude.As will others. I am not good on computer-- getting better-- keep smoking the keys your info helps me and others.TTFN---NEPOL

Beth I am so happy to hear Gary is doing well on the Xtantdi. Robert and Nepol it is great to share these trials because so many times its hard to get in on them . Here in Canada there were not as many of tnem and many times inaccessible because of distance .
I am in sunny Florida and hoping today my freind and I can go to the beach. It has been very lovely and I am sure my freinds Jim and Karen are tired of hearig me say ""Wow "".It hhasn't been to hot but warmer than Canada and a bit more sunny .
So far I my travels I met a lovely 78 ish lady who lost her hubby to PC 9 yrs ago . A bar tender / waiter who is 56. The question posed to me went like this , Is your husband joining you for dinner tonight? Reply no I am alone. Other dialogue conversation like going to Florida metting frdinds there on the 18th that I have not met personally but am so connected to through prostate cancer that her husband has at stage 4 and what took my husbands life In Aug. Yes my wife tells me I should get screened and I had a colonoscomy at 50. I don't go to the Drs I am healthy, this from the waiter . .My reply , please listen to your wife when you get to the Drs office and you are handed the line about Task force guilines or your Dr saying you don't need the test .Tell him you want it. He listened very intensively and said he will get his wife to book his Drs apt first thing In the morning. .Enter conversation with elderly woman. Her husband endured excruciating pain , many stays In the hospital, and she loved this man with all her heart . She cried when she told this story and maybe these are stories that will make some one listen to how great husbands and fathers are dying very needlessly with lack of screrning , negligence or apathy from their Mds who just are not providing any preventive medical. I wished in my life time that urologist had men at least once in their 40s to run Dres and psa testing and then again every couple of years after . I think they know how important prostate health is the can connect symptoms earlier and know advanced tests for men who need them .Their skills and knowledge are what general practitioner do not have .
So my holiday is lovely, today I will be going to the beach . On the 18 I will get to meet Dee and her husband Darrell. This Monday he will be getting his 37th jevtanta chemo treatment. This however will be his 57th chemo treatment and he also has tried zytiga and xtandi. During Daves illness she and I made such a strong connection as freinds .Our husbands were just a few months diffrence In age Theirs in a sense is a sucess story because the treatments have kept cancer from growing quickly . It hasn't stopped it completely and she knows she faces life with out him one day as well. But I hope when I am there we will laugh and live the moments and the time .I to will have have the privilege of meeting another great man . 🌞😎