we sat down with the oncologist yesterday and she gave result of my PSA of the day....it was UP.
then I said...yes, but how about my Axumin PET Scan from two days before...?
She said, well....the spot on the pelvic bone has grown....these two lymph nodes have grown.....
and then she said, but it could have been worse...
so I said...
"so what you're telling me is my GOOD NEWS is that my BAD NEWS is not THAT bad."
She thought about it for a second...her assistant thought about it...and smiled and the oncologist replied. Yes. That's what I mean.
hmmm....today I'm thinking another way of saying it might have been...
"The good news is that the bad news could have been worse"
**actually the three growth areas were not Huge...and there was no spread...and the PSA is only up to back where it was the time before last... (5.2)....after dropping down to my excitement to 3.94 on the last test last month. But She believes since PSA is only going up up and away...and Scans are not improving....that the combo of Lupron and Xtandi and Xgeva....is not working. Xtandi will need to be changed to something else...
1. checking to see if the 3 areas can be radiated (I had radiation as first treatment to my prostate 6 years ago)
2. Chemo
3. Trials
the journey continues....and still feeling (except for Lupron fatigue and weakness) pretty great!
gJohn
p.s. will be starting back on Fenben if I ever get it from back order.
Written by
greatjohn
To view profiles and participate in discussions please or .
Not really the news you or anybody wants to hear, but those sound like good options. And you can always rechallenge with a second line hormonal after chemotherapy.
Any chance you can get Darolutamide off-label? It's really a shame that it's only approved for non-metastatic at the current time.
Eat a couple cheeseburgers with a side of chili cheese fries while waiting for the dewormer that makes you bark at the moon over Miami. Everything will be OK.
Thanks Gregg....the actual really good news us that I still don't have any cancer pain or issues...just Lupron and Xtandi issues...and those are not too unbearable! If I didn't know I had cancer....I'd never know.
After I read about this, I vowed never to shop there again. I do make rare exceptions, but they are very rare:
This is what Walmart did to one of their employees:
Debbie Shank, 52, suffered severe brain damage after a traffic accident in 2000. The Wal-Mart employee received about $470,000 from the retailer’s health plan for medical expenses, but the company has sued to get the payout back.
Shank suffered severe brain damage after a traffic accident nearly eight years ago that robbed her of much of her short-term memory and left her in a wheelchair and living in a nursing home.
Just read the link you supplied. Shouldn't be legal--a plan like that. The monies awarded in the judgement were to be used for future, necessary care. I hope that was specified. There is a chance there but the time involved and the legal fees needed to fight that. 90 billion buys a premier legal team that can go on -- and on --and on longer than the legal team's top managers live or this unfortunate woman and her husband live.
Walmart should expect that the bad publicity from this will cost them more than the monies they could recoup. People have empathy for others.
I wish you well on your journey. In the short period of time I have been at this forum you have given me much help in your posts. I'm just getting over crying everyday being depressed and sad and you are far ahead of me with your DX but still have your positive attitude and hope to give to us newbie's to help keep us going. I follow your post because I get what you say and it encourages me. I love your spirit greatjohn. Arlis
my motto (even printed on my calling cards) is "I'm going Somewhere, Slowly". I have seen everyone all around me...all of my life...in such a hurry.(As my mother would say "going Nowhere, Fast)
In this last part of my journey, taking it slowly feels even better. Enjoying ever bird that I see, breeze that I feel...conversation I am part of....every moment of sunlight or grey sky, even every taste on my lips....is Joy. I even read novels more slowly savoring the descriptions and the motives of the characters as if they are my family.
To all I would say (still). Slow down. The journey REALLY is the destination.
big hugs on your journey & I am humbled that you follow me on mine,
What an attitude and resilience of spirit you show! You are the glass half full guy for sure! Attitude has much to do with staying in the game.
The Dr. Ruth Heidrich story is an example of that. Simple, difficult, diet changes and exercise within a year the metastases on her ribs were no longer to be found! What works for one may not work for another but your attitude is potent weapon in your arsenal. I am envious! We try this and that and as of yet, most of those of us on here are here for a reason. The treatment we have chosen wasn't successful.
Keep doing whatever you feel benefits you, slows your cancer down or stabilizes it. When I reflect on the success of President Jimmy Carter's immunotherapy I have to believe that there will in the not too distant future be something for cancer patients. Whether it will be offered, affordable or effective against all cancers will be interesting.
I would try a cure with Melatonin Max 60mg, 3 to 6 times a day . There are no bad sideeffects for your health to take it and there are really interesting studies about. You risk only to be tired when you take it.
I had a good laugh GreatJohn. Thank you for that. I have been on fenbendazole since early December last year. PSA test on December 30th (almost 4 weeks) showed no change in PSA trajectory. I have conducted more searches on the Web and found that it may take 1 to several months to observe a response with other types of cancers. Fingers crossed. Cheers, Phil
Trying to keep the vibes positive but Fenben is not stabilizing my husband's PSA. He's also on Zytiga and prednisone but may stop that as well if necessary for chemo.
Funny story is that my neighbor who has breast and brain cancer called me to come over as another neighbor had brought her pages and pages of information about a natural cancer cure that had worked for her fighting three cancers. She was very adamant.
When I got there she said, " Read this. I think you have to take dog poison or something like that." Didn't sound natural to me.
I read a few lines and saw Joe Tippens name and told her it wasn't dog poison but dog dewormer and that my husband has been on it for awhile now and it wasn't working.
You have maintained your sense of humor and you made the MO smile. That is something to celebrate. I think a sense of humor is so important to maintaining your health and enjoying life! Oncologists have a hard time of it, if they care about their patients, and I am sure that having ones who can make a joke in light of bad news is rare and welcomed.
You sound like you are doing well with all that you are dealing with. Keep that positive outlook as much as you can and enjoy your life.
I had a friend who always quoted his dad during a terminal illness (he had AIDS in the 80s)...he said. "I'm gonna live until I die". That IS good advice.
Dont know if its an incentive but i do know my MO has 2 daughters he is sending through college so keeping me around to help pay the bill is probably in the back of his mind. I hope they both go for their doctorates which would give me at least 8 years. Hope you get better good news less good bad news in the future.
Thank you for your wonderful ,inspiring posts. I am on fenbendazole while my Mo was suggesting xtandi and wrote the prescription for me. My Psa had reached an all time high of 175 a month earlier.
He failed to explain why my previous scan showed LNs gone..but was concentrating on bone mets which is a concern..I did not tell him I was on Fbz.
I had some things blocking the Xtandi fill which I was worried about side effects.
After one month of releasing my future to total trust in my Saviour, my PSA fell to 56.This ,plus my continuing swimming without discomforts , gives me the impression that Fbz is the answer...The only other drug is Lupron which was failing .
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Good news!
Brain metastasis treatment options?
Some good news!!
Newbie writing for hubby - more bad news.
