Just not in a good spot right now. Running out of hope and running on tears. Bobby went for scan AGAIN to determine if he could have SBRT to the remaining met that surgery couldn’t get off his thoracic spine.
He hasn’t had any treatments since November 17 which was his last infusion of keytruda. His MO called and wants him to start Carboplatin to try and get the cancer under control. He has been through so many treatments and he is getting tired. His hope was to start that Car T trial which is now on hold. He’s about ready to just quit it all. I just want to know if anyone has had much success with Carboplatin. Thank you all for your continued support. Faith
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Faith1111
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I'm the same way Faith. I can't offer much in knowing how Carboplatin will work but I sure do have Bobby and you in my thoughts.You have got to catch a break.
I seem to have high regards for all the chemo's as they are so potent but I just don't know if it will work. His PCa has been off to the races it seems. Let's hope and pray the Carbo puts the brakes on it.
Again focus to Bobby and you and lets hope like hell Carbo puts a major dent in this progression.
Thank you for taking the time to reply. There is so much support and so many wonderful people on this forum. I I guess it’s a bright spot in some pretty dark times right now. Not sure if he’s going to do anything more or not. He needs some time to process everything and make that decision.
My husband did Carboplatin. He’s doing well today. It has been 2 years in December since he completed chemotherapy.
Your brother has been through a lot (and you have too) cancer treatment is a wicked roller coaster. High highs and low lows. And the bottom drops out without warning.
You are a good sister. Love to you and your family.
I appreciate your reply and your support. It means a lot. It sounds like the carboplatin helped your husband. Bob did Docetaxel early on and it did knock the cancer back quite a bit. Hope and peace to you and your husband
I am right where you are but it’s with my husband. Something new every day to try and work through. However, my husband hasn’t had chemo and not sure if he ever will.
You are a wonderful sister and I wish I had one like you.
I am currently on Jevtana and Carboplatin. I think the side effects are less than I experienced with docetaxel. However, it doesn’t seem to be helping the Mets on my spine. Good luck with your next move.
I just finished 6 rounds of carboplatin and etoposide with a side of atezolizumab. The side effects have been manageable and the tumors in my spine and pelvis are stable according to the most recent PET scan.
That’s the problem, You just never know until you try something. Bob just isn’t sure he wants to keep putting his body through all of this when it may only buy him a couple of months. I guess there just comes a time when you have to make some really serious decisions. Unfortunately he is only 58 years old and will leave behind a wife and family.
I'm so sorry to read this. I had hoped that some encouraging news would come your way. Still hoping for that. I am keeping Bob and you and your family in my prayers.
I hate to put it this way.... and frankly I don't know if I would able to take my own advice: Tell your brother Robert that many a youngster was killed in the Normandy invasion during WWII and they didn't have a chance to live. Tell him to fight his ass off since he has a chance to live. Do you know how many of those young men forfeited their lives so he and I have a chance to live? Damn it Robert you have a family and you must muster all of your strength and valor and kill those Mother F-----g bastard cancer cells and win your battle. God Bless You, and I apologize if I sounded like a drill sergeant. I want your dear sister to be able to visit you when you're 95 years old in a nursing home for the first year.
p.s. Sis, God bless you and God bless Robert's family.....
Thank you j-o-h-n. I can feel the emotion in your words. Yes, I want him to fight with all he has however sometimes the quality of one’s life must determine their course. I would never want him to stay around in terrible pain or anguish for us. His radiologist just called yesterday and said he would be able to get SPRT to the spine. That was great news. I will post an update when I know more. Thank you so much for taking the time to respond. I really appreciate your input. Everyone on here has been so kind. Faith
At 58 I would go for it... at 78 not so sure. Young people need to try harder than us older guys to keep it all together. I'm actually only 72 and haven't been offered carbo yet. New scans and blood work next week + a drs visit. Hope all will be good after treatments I had in July and Aug. of last year. Life Is Good, but sometimes we may need a reminder...
He's been thru a lot. Just think of the last 6 or 7 days. Excruciating pain, ER visit, nearly paralyzed, spine surgery, news that all of the spine tumor can't be removed.He must be still in pain and utterly exhausted.
Some here have been thru similar to this. Others not.
I hope he can get relief and clarity in his mind. I know he has love and understanding from you and I hope his whole family is behind him with love as well. I'm sure they are. Probably grief and fear. I hope humor finds its way in occasionally too.
Yes, he certainly has been through a lot. He’s always been a strong guy, likes to work outside chopping wood, gardening etc. his quality of life has changed so much and he has been reduced to trying to walk with a walker now. It’s funny that you mentioned humor. Through it all he has maintained his sense of humor. We laugh about the darndest things! He has always been able to tell a story that is hilarious without trying to be funny. So thank you for your reply. I really appreciate it. I will update on the forum as we go along. Thank you so much for your support
Faith, so sorry for your Brother Bobby.I don’t know much about Carboplatin. I was turned down for SBRT by 2 Radiologists, but Dr Sean McBride at Memorial Sloan Kettering in NYC said yes to 5 treatments to Prostate and 3 treatments to T5 in spine. They use “MSK Precise” which is Image Guided SBRT. First tattoos to align 10 laser lights on ceiling with a custom body cast so no movement of 1mm or less. Combo of MRI, CR, and Ultrasound to precisely know margins.
It would take 1 visit for scans, tattoos (freckles), and body cast, then 3 days (possibly consecutive) to ablate the vertebrae.
Kwon of Mayo says when he does this he finds a drop in PSA within 3 months.
Best of luck, Mike
Ps: I know a nice inexpensive hotel (The Bentley on East River-views of Queens Bridge)within walking distance-5 blks., and a Restaurant (The Ritz Diner) open 24/7 that is run by a kind Greek Family and inexpensive. Great Soups 1 block away. Airfares from Tampa under $400 to JFK. Taxis $65 flat from airport, then easy walking
Good morning, thank you for your reply and great information. Bob got a call yesterday from the radiologist and she indeed is going to do SBRT. He is going into Boston tomorrow to be marked up and have numerous tests and preparation‘s. It will start in about a week and a half. He just needs to get the rest of that met still lingering on his spine. Glad you were able to get SBRT as well. It is amazing what they can do. Best of luck to you Mike
I will always remember my talks with Bob filled with high hope that Keytruda would bring similar results that my husband got, I wish it did. It's hard to have that hope taken away from you but it can't take away our fight to live another day so we keep trying. I pray for a miracle he's such a wonderful man.
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