I'm facing the oncologist telling me that I need to decide between 3 or 4 really bad sounding options....Chemo for life...Radium 223...Xofigo...and I have added in the option of Lu-177. My PSA is doubling EVERY month lately ...and is up to 48. I have stopped Xtandi for almost two months (she declared it wasn't working) and I have been castrated (to no regrets and such ease I can't believe it). I was hoping the castration would give a boost and PSA would go down...instead it's only gone up since the surgery. I also just got another FoundationOne test done and I am awaiting the results on that....
I've been doing this cancer thing since Jan 2014...so SEVEN PLUS years now Since I was about 56..and it's been stage four for over 5 years already...so I'm calling it stage FIVE since I'm still feeling and looking very good...all things considered. My numbers and the fact that my mets have started to multiply lately...make me think I need to "shit" or get off the pot...as they say~~ before I am just another "grim statistic".
Does my situation look like anyone who's had Lu-177 with good results? My mets are all in a few lymph nodes and now about 8 bones...but the doctor says they are all very small still.
in other words....what the hell should I do? LOL.
gJohn
p.s. I got my first of two of the Pfizer vaccination shots by knowing someone who knew someone(really). I'm thanking god/Jesus/buddha daily for that blessing...
p.p.s. The beef in cream sauce with mushrooms had noodles added to it after this and was one of the best "comfort" type foods I have made in a LONG time. If I ever lose my appetite...I will go back to this picture for a boost!
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John - good to see you update us! Love the dish in the picture - reminds me of my Stroganoff recipe...though, less enticing than yours. Actually, John -in the great scheme of things...you seem to be doing rather well. Hang tough, as you always do - keep us informed (John and I landed on this site about the same time... )
I am thankful to be doing so well. EVERY day. Just wish my "numbers" and scans could look better ....I want a few months of summer fun this year! travel, etc.
I have soft tissue bone Mets. My PSA remains < 0.1 but bone Mets have been growing. Just on 3 monthly Zoladex at the moment after being on Zytiga for 3 years.
I did a PSMA PET scan and found I am PSMA avid.
But I am taking non steroidal anti inflammatory Indomethicin. Maybe crazy but it stopped my bone Mets back pain as of first week of December 2020. I am skiing and jogging at 59 years old no problem and value QOL.
I am chemo naive ( not a chemo fan but might have to do it one day).
But I am a fan of Lu177 but lack of access to it in Canada/ USA has put me in a holding pattern. Hopefullly approval will come soon.
In your position I would try to get a PSMA PET scan to see if PSMA avid.
that's what the oncologist is probably going to discuss on our next zoom visit. They're not done locally..I think only in California. Will have to work that out...because of soon having BOTH of my vaccination shots....I will be more comfortable with flying.Thanks,
thanks...I looked over briefly and will study more later.J.
While in the US Army during training, we called that dish shit on a shingle. Now, I really hope whatever path you take with your treatments, it will work well. Good luck.
Noname, your unit Musta had a whole lot better cook than mine. And our SOS did not have mushrooms or cream sauce it was a hamburger mixed in with flour and milk-based gravy. And still, pretty good. I made myself some last week. WETSU! (A basic training cheer meaning, “we eat this shit up!) 🤣🤣🤣
Hang in there, greatjohn. TA gave you some good links for consideration. Remember that there are guys here who have been alive and kicking with PSAs in the hundreds or even the thousands. You are monitoring the evidence of disease and treating it, not treating the PSA number.
If you do try a chemo next, always remember that you will actually be doing it just one round at a time. There are guidelines for adjusting/modifying dosages to balance benefits with typical side effects or some rare adverse event during a treatment.
Two thoughts on your post, in addition to pointing out that I'm reading this as founder time approaches and it's making me hungry
1) I am also facing chemo for life, and am actually quite excited about it as I've had 5 cycles, it's been confirmed that it's working well, and the side effects are tolerable, which is to say preferable to an early death. My MO and I agree the cancer will come roaring back if stopped after some arbitrary number of cycles. Several members here have gotten extra chemo beyond the standard number of cycles and have done quite well afterwards. I've also heard a second hand story of somebody being on chemo for years and doing well after something like 100 infusions. The key IMHO is to adjust dosage, timing, etc., to balance QOL while keeping the cancer under control.
2) I had the Foundation One test and it didn't find any defects that pointed to great treatments. It did say I had a PTEN mutation that is present in 70% of prostate cancers, and as a result I might benefit from a PARP inhibitor, but it wasn't something my doctors jumped at. What the Foundation One report didn't include were the large number of copy variations present in my cancer. That was included in the biopsy done at Dana Farber, but I've since learned that was an experimental test so I wouldn't know what to ask for if I wanted it. This revealed that I have one mutated copy of PTEN, and the other is missing entirely. I must have over 100 copy number variations, and the trend is I have extra copies of tumor promotor genes, and missing several suppressor genes, so is no wonder my cancer grows out of control. For all that, it didn't recommend anything that wasn't in the foundation one report.
I've come to the conclusion that chemo is underrated. Some of the genes that have gone missing in my cancer make it susceptible to chemo, but provide some protection for my healthy cells.
I also asked her if I could do 3 sessions and then take a holiday for a couple of months...and then do 3 more....so I am not trapped in the endless every 3 week rat race of infusion. She said that we could try...so it's not looking as bad as it did just "for the rest of your life" as she first put it.
I found this link ncbi.nlm.nih.gov/pmc/articl... looking at various ways of administering chemo. What you just described would be "intermittent" in the link, and apparently produced the best outcomes if I read the article correctly. It's a good option if the cancer doesn't erase all the gains in the off period, IMHO. Interestingly, the worst option was waiting for the cancer to progress before resuming chemo.
I’ll tell you what to do gj .... scoot the heck over ... I’ll be right over and I’ll bring my own knife, fork and big cloth napkin to tuck into my shirt. I’d want to see a hefty splash of morels in that skillet tho ..... just say’in. Yum yumyum. ( slobbering all over my shirt right now )
You’re a tough warrior and a long term survivor buddy ... you’ve obviously made good choices in the past ... no reason to think that won’t continue.
I’m going out in a few to get my first Covid shot too .... then ... better set the table, and don’t pretend like no one is home this time either. Yayahahahaya yayahahahaya
Doorways widened .... chairs reinforced? Yayahahahaya yayahahahaya. Thank you for the offer of hospitality. Got my moderna shot about an hour ago ... appointment for 2nd in three weeks. I already feel safer .
You and I are running the same race! I hope we never get to the finish line in this prostate cancer race.
I started in July 2014, failed Casodex, zytiga, xtandi, LU-177 and another trial drug cabozantinib which targeted bones. Lymph nodes blocked my uters leading to kidney failure so I have bilateral nephrostomy tubes draining my kidneys. Doing Taxal currently and looking for a silver bullet because like you I felt I needed to do something. Want to shrink the lymph nodes and get the nephrostomy tubes removed before water sports start this summer. I retired purchased a gas stove and I am the family chef. My in-laws ask for all leftovers.
The LU-177 worked well but what disease was not effected took off. I do think that the cabozantinib helped stop the bone mets from increasing the. I will also see what tall allen has referenced.
You may want to rechallenge zytiga with dexamethasone. That worked for me but can't do chemo zytiga according to my MO because of insurance concerns.
Keep cooking, spoil youself, and your partner it is the little things day to day that makes life great. Also got our covid vaccines so look forward to travel.
Great John, hang in there, rooting for you. We're still in much better places than some who lost the fight. There have been too many losses from this site in the last couple of months, we need to break the streak.
My advice to you is to do the Lu 177, the sooner the better. I did mine about the same status you have and it was a breeze. Friend of mine waited and had to go through five treatments. Bottom line is that we are both in remission, I got away with one going sooner. LU 177 treatment is a German development, but Australia has been doing some interesting tweaking. I went to Dr. Richard Baum in Wiesbaden and he one of the most knowledgeable in the research of this treatment and uses the Australian methods as warranted. That's all he does and has a dedicated staff and section of hospital where everyone knows what to do. Very impressed by their operation. Good luck with your decision.
Looking through your profile you are a Gleason 7 with a low disease burden so usually your disease will be very slow growing and not overly aggressive. However your PSA doubling every month is worrisome though and if this is correct and continues your disease burden may increase more quickly despite you being a low/moderate risk APC.
Personally chemo for life would be a nightmare for me. If you have the money to afford a PSMA scan and Lu 177 therapy you would be a great candidate if PSMA avid to enter remission for years.
Just a brother’s opinion but your decision should be in conjunction with your medical oncologist and not based on this forum in the end. Good luck.
thanks soooo much for your kind and thoughtful reply. I just read your profile and ALL of your posts...and I feel such incredible simpatico with you. I'm hoping for a flare up (in the good way) of your results from your first LU-177 and for you to be able to do another trip to England. As for me, I am at a fulcrum point where I need to make a very important decision and your post has given me much to think over. At 64, I too, think that there is more dignity in just "floating with the current" at some point rather than fighting a losing battle trying to fight the current. For now, I am lucky with decent energy and (as best as I can tell) no pain from my mets.....so I am looking for an easy path to a good result.All the Best to you (and remember I will be keeping you in my thoughts, prayers, and devotionals)
Gjohn,Dish looks delicious. Sorry to hear of your current dilemma. I’m new to the Pca game - Dxd last March advanced stage 4, metastatic. I don’t have the experience to answer about second and third tier treatments. Thank god my current SOC is working for now. Can only offer you encouragement to stay strong and will pray for you find an effective treatment going forward. 👍💪🌈
My husband did radium 223 (oxfigo) at vanderbilt when it was relatively new. It helped him with the bone mets & had very little pain from his Bone mets. My thoughts & prayers continue with you.
Great JohnI just faced the same decisions you are. My Zytiga completely failed after 3 months going from PSA 4 to16. My bone mets doubled and my ALP went from 165 to 240.
My MO gave me the same choices but said he thought my best next step was Docetaxel.. Scared to death before my first injection yesterday. Went very well - walk and play golf today - - chemo crash for 3 days is supposed to start tomorrow. I was scared out of my mind but so far so good.
How old and active are you??? I am 73 and had the beast for 18 years. A lot of great posts on this site about other brothers in you same spot. Check out posts from:
I'm 64(Jan 24th) and WAS super active...still "very" active...with cooking, cleaning, gardening, lots of walking, and (since covid) doing weight lifting with lighter weights at home...before was going to the gym 2 or 3 times per week. The chemo route...I've been told can be adjusted to make it not so bad each time. My first time doing chemo for 6 sessions SUCKED. Doing that for the rest of my life sounded TERRIBLE. I'm weighing the decision carefully...thanks for your imput and good luck for many years of "Active"John
Hi Great John, you'll probably think this is a weird comment, but when I read your post, I instantly connected to your vibe...
That said, I know we're all different...but many of our paths are running parallel. Late last year (2020) I found myself in a PSA doubling cycle @ 4 weeks...xtandi failed...did the Provenge, Taxotere, etc.etc. Gleason 9 and aborted the mother ship back in 2017...I turn 57 in March.
I don't have the money that some of the members have, so living in the good old USA, LU177 is really not an option for me (unless a trial is available). So I started Jevtana and after the first dose, it stopped the PSA progression dead in it's tracks, even dropped it by 0.5. The right direction.
All I can prescribe to you is more comfort food...but I can say that the Jevtana is working, and it's not so bad (and not as bad as Taxotere)...I've had 2 doses so far, the next is March 5.
Like you and so many of us, I'm too stubborn to let cancer beat me down...yes, we're not the men we used to be; cancer free with all the testosterone running through our veins...but we are warriors in our own way, and I am constantly impressed by the bravery of the people on this forum....you are one tough guy, and one of the people I like to draw energy from...
No matter what path you choose, you'll come out on top because you're thinking positive rather than negative...and that makes a huge difference!
You have given me a lot of food for thought. The chemo that you are now doing was one of the choices she also gave me instead taxotere. she said, like you , that the side effects were less then with the other drug. I’m going to think a lot about this and see what she says on the next visit. Thank you and good luck!
How are supposed to keep weight off when you keep putting awesome looking food in front of our faces sounds like you in a good place for now and that puts a smile on my face. Wishes for continued peace.
Hello greatjohn. All I can say is, do you have any Greek Horiatiko Psomi (Crusty Country Bread) for dipping in that wonderful sauce? (Tarpon Springs).....
Hi GreatJohn. Good cooking man. Lu177 PSMA is superior to cabazitaxel chemo on advanced disease. So if it is possible to consider travel to India for it $$$ wise, then I’d say go to UCLA for Ga68 PET scan to see if you are PSMA avid. You will be fine with one dose vaccine if you take all of the usual precautions in the airport and planes. Otherwise the chemo is also a fine option to try to restore AAR drug sensitivity. Lu is better early it appears. Keep on friend.
Thanks, I just chatted with my oncologist and she thinks I’m at the perfect time to do the LU- 177 so hopefully it will work out. I have not determined what country it will be in. She says there are some studies on going in California using it.
Hi Greatjohn,Bill is in the same boat. Diagnosed July 2014 but he is 72. Just off of the Xtandi trial last month, more bone mets, PSA climbing (but not doubling). Looking for another clinical trial and keeping chemo and radium 223 for when the pain starts. So hard to do the living inbetween the treatments, expectations, planning. I guess though we are all getting ready for the end in one way or the other. We left the appointment yesterday and Bill got chocolate shake, french fries and a fried chicken sandwich at Micky Ds. Not our normal fare.
We are both double vaccinated now. Woohoo. This whole thing really f.....s. Not feeling very cheery this morning. Always tough the day after the appointment until life slaps you with something distracting and you just stop thinking about it.
Hi, I just read Bill’s profile and it does seem like we are pretty much following the same path although he started a little bit more aggressively and pronounced than I did back in 2014. I am researching different options for the LU177 treatment and my doctor has mentioned a new trial with it in California. Other than that I’ve been checking out different countries where it is available. My doctor thinks I am at an early stage and will do very well with it. Time is of the essence in this journey. All the best to you and your husband.GJohn
Advice re Lu177. With my G9 aggressive PC, I had 4x treatments with this in 2017 & soft tissue pelvic foci - negative PET PSMA on followup for 2y. Had 2x Lu177 in 2010 on extensive bone mets; poor result. My advice use this treatment as early as possible.
Please check my past postings and background. Since 2010 with p3bN0M0 G9; RP, Adj EBRT, combined ADT, abiraterone courses at 3 different stages, Lu177 x6, docetaxel (7x), lotsa palliative EBRT to mets (70Gy), Enzalutamide +/- docetaxel to come. R
It's probably best to place this info in your bio of your profile...it makes it easier for the other to see what treatments you have and the results to date.
The treatment landscape has changed quite a bit since 2010. Curious, why haven't you tried provenge? As I understand it ...the earlier it's use the better the outcome.
Rather simply expense as not available in NZ or Aust, and there is still little evidence that I am aware of to support its use in very aggressive tumours.
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