I am stage IV metastatic PC. Had PSMA scan 8/18 showing lymph node involvement. Started Firmagon 10/18. T and PSA went way down. MO switched to Lupron 12/18. Since then T staying around 20, but PSA continues to rise - doubled from .35 to .7 in last 4 months. Due to go back on Firmagon in 2 weeks, but my concern is that my cancer is now castrate resistant. If PSA continues to rise after going back on Firmagon I will know. I want to get Lu-177 treatment but my case is not advanced. I am in California and can't afford to go to Europe or Australia. Any clinical trials that would take me even though I am not end stage?
PSA still rising.: I am stage IV... - Advanced Prostate...
PSA still rising.
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Tall Allen has been through the whole pharmacopeia and will give you good advice....have you tried to augment with bicalutamide until you find some other solutions. With your sensitivity i would think your cancerous androgen receptors may be affected by this often overlooked med.
power patience and peace be with you.
You are not castration resistant. If you just have lymph node mets, "the median interval to disease progression is 67 months". See this study:
It's too early to know if you are castrate resistant. When that happens, you can go on to one of the second-line ADT drugs: Xtandi or Zytiga.
bellyhappy in reply to
Hi Gregg, I believe you had done docetaxel treatment in recent time. I will be planning to do mine sometime next month...My PSA had dropped from126 to 0.4 from Nov till now. I have been on Lucrin, Zytiga and zometa. Had multi mets on backbone and lymph nodes. Recent scans shown a lot of improvement but still have some of lesion on the backbone. Any advise on how you manage your docetaxel treatment. Has it helped in your battle with PCa? Thanks
in reply to bellyhappy
It's difficult to know how much Docetaxel helped me since I got the treatment early on while I still getting great results from ADT only. I did notice that I was feeling better at the end of each cycle. The first time I was completely pain free was during chemo. But I was also doing ADT which was effective so hard to know it was the chemo.
During chemo, I found it helpful to try to get as much exercise as I could and I drank lots of water. I tried to walk every day, but some days I didn't go to far and sat down a lot.
Don't plan to do a lot of physical activity during the first 5 days after infusion. Other than that, it was very tolerable for me. I recently had the flu and I was thinking how much worse that flu was than chemo.
Above all, don't be afraid of it. Most people tolerate it well and it does work.
I'll probably be doing again sometime in the future, hopefully a long time from now.
Good luck with treatment.
bellyhappy in reply to
Thanks Gregg. My docetaxael plus ADT treatment was a suggestion from the Oncologist to increase my survival time...
Would you suggest that I have cold pads for my feet and hands during the infusion? What abt the idea of eating ice cubes during infusion? What is the most vunerable period for infection during the cycle? Thanks again
in reply to bellyhappy
A lot of people do these things with ice cubes and cold packs, etc., but there is no real evidence to support it. My chemo nurses all said it was a waste of time so I didn't do it.
But even though I didn't do those things, I had minimal hair loss and no neuropathy so I guess what I did worked for me.
The most vulnerable period is around 10 days after infusion. My advice is to get an acccurate thermometer and if your temperature hits 100.4 you head to the ER without passing Go or collecting 200 dollars. I'm sure they will tell you that, it's standard procedure. This happened once to me. Everything was OK, but you can't take the risk.
bellyhappy in reply to
Thank you again...BTW, I dont have any pain and the oncologist also suggested the chemo treatment as he believe that at 61 , I will be able to handle it
May be no evidence to support icing. I had not heard of it and developed neuropathy of feet after chemo. If I do chemo again, quite probable, will take a couple of blue ice packs, cloths to wrap them, in a 6 pack ice cooler. No muss, no fuss. I turned down the drinks with ice they offered. Gal I was next to developed mouth ulcers. Next time I will accept the ice. Most people don't get foot neuropathy or mouth ulcers, those who did will be saying "Where's the ice?" Maybe it works, maybe it doesn't. Maybe someone with a definitive answer can step up.
Going on LU-177 now would be like shooting an ant with a shotgun..As mentioned, bicalutamide followed by Zytiga could keep you going for years.
If you had only pelvic lymph node involvement, have you considered whole pelvic radiation?
TA, can you help with what constitutes whole pelvic please? Would this be prostate plus lymph nodes or more?
Thank you
It depends on whether you prostate has already been removed. It always includes pelvic lymph nodes.
Thanks. I was just a bit concerned that a nurse commented that they're treating prostate and lymph node. I thought whole pelvic radiotherapy would of been more that that, such as prostate bed and seminal vesicles
It can be. It depends on what was treated before.
Hmmm nothing has been treated before. I'll have to question.
Thank you
Then it would include the prostate, SV and a margin around them plus the pelvic LNs.
Hi Tall_Allen, so appreciate your expertise! I have multiple lymph node tumors up to 4 cm and docs giving me only couple years, on Lupron and Zytiga. Is there a study you have found showing radiation of pelvic is beneficial?
Only if all the lymph nodes are pelvic. Once outside of the pelvic area, it is incurable. Is your current regimen controlling your PSA and scans?
Docs are saying very unusual penetration into corpus spongiosum region, but not outside pelvic area. Yes, PSA dropped in 4 months from 100 to .12 and less pain. One MO is concerned of risk with R due to location of PC.
Thanks!
That is outside pelvic lymph nodes.
My husband was diagnosed in Jan 2017 with several enlarged lymph nodes in the iliac chain, obturator and para-aortic lymph nodes which are as high as the naval. Largest node measured 3.6 x 2.4 cm. He was treated with Eligard (Lupron) and had radiation to the pelvic area. Not sure if they radiated the para-aortic area, but the thinking by the radiation oncologist was that radiation would slow it down. After two years on eligard and psa of .08 he stopped the eligard with no rise in psa. Still waiting to find out the reasoning behind this.
Tall_Allen, any thoughts on why they stopped the eligard?
Good luck Braveheart1a, I hope you get the treatment you need.
Some Docs believe in intermittent treatment with Lupron, stopping after 2 years. This could be the reason. need to confirm with your Doc. My MO is Dr Cheng with SCCA, very highly regarded. She doesn't recommend stopping Lupron after 2 years...
Keep us posted, thanks for the encouragement!
I’m not an expert . My opinion is that diet effects everything even APC. I’m told by my May dr not to eat bananas or grapes or high sugar fruits at all. I do eat apples and every seed within. More veggies . You and I are both stage #, and this is APC . Chemo might be needed .. Eat to live .. good luck ..
in reply to
Not eating fruit is a chemical fallacy, as this assumes all sugars are the same. Docs are very ignorant about this. It is COOKED fruit that is deadly (or in a bottle, can or carton), as the sugar is chemically different, and the enzymes to digest it correctly are destroyed. I would suggest do not feast on things like bananas, but spread them out over time a bit. Good food is always good. Try to avoid commercial produce as it is likely to contain small levels of carcinogens.
Jbooml in reply to
If foods contain known carcinogens or mutagens I would avoid them....otherwise man has evolved to eat digest and process just about anything....spare their allergenic effects. Eating an Aminita virosa would surely end the life of liver tumors but so terminate host as well...horribly. The point is you can’t kill cancer by destroying the host..us. Shades of saving the village by razing it to the ground. We are all unlucky survivors of a combination of a genetics and environmental roll of the die...pun unintended. Eating a steady diet of cyanide might poison a few of your tumors in advance of imminent death .....but it’s hardly a solution to 4th stage cancer.
in reply to Jbooml
There is no solution to stage #4 APC ..live well while we are here ..
in reply to
I agree about cooked fruit,bottle carton or can,and commercial produce ..
More info: Diagnosed 7 years ago. Gleason 7 (4+3). Never had surgery. Initially IMRT. 2 years later cryotherapy. 2 years after that high dose brachytherapy. PSMA PET/MRI 2018 showed 2 prostate, 1 seminal vesicle,1 lymph node lesions. That was 11 months ago. PSA then was 2.2. I hesitated posting because I am not end stage. My feeling is why not shoot the ants with a shotgun? I have seen miracle results with Lu-177. If my cancer is PSMA avid it might get it all.
No cause for panic, as you have a little time to experiment and find what works for you. Have you found your cause? Did you stop doing what you were doing? Before you hit the heavy stuff, see if you can find a clinic in CA that does Vit C via IV at a reasonable price - it should be under $100 for the drip (I pay $60 for a home visit, but I am not in a "high price area") . Perhaps there is someone in this forum who knows of such a place (plenty of expensive ones!). If IVC works for you, a weekly dose could keep you off the more radical stuff for a year or two. Do some more homework - this field is full of half truths and plain lies (and some very good advice in this forum). And even fuller of people who are out to make money at any cost!
in reply to
I hit the Vit-C I’ve heavy my first years with APC . Now I do one monthly ...I’d do more if not for the cost .. I feel good for several days after and seam to get a burst of energy ... love the C..
in reply to
Add a Xtandi capsule or 2 the night before the drip, and see if that doubles your kill. The problem is to avoid buying a very expensive box with a 2-year supply!
The "niggle" increase 12-18 hours after a drip is a good indicator of the kill - the more corpses, the more inflammation during the garbage collection! This works even down to PSA levels around 0.1 that things are happening. Good luck. Thanks for the comment.
What chance Do Myhubby58 have. He’s been diagnosed since July 2017..always in pain in left side and legs..like how long he can continue to live this way.
in reply to Myhubby58
I started at 53 ,now I’m 58 .. The answer is different for each one of us . Putting an expiration date on ourselves is counterproductive .. APC is a nightmare ... from A to Z .. He can live for many years if everything goes right .. some have lived with APC for decades ..The important thing is to realize how brief life really is and to enjoy what we can while fighting this disease .. Do anything to take our minds off of APC daily .. for me it’s music ,comedy and true relationships ...... I’m sorry for th3 suffering and pain . Goes with the territory . Half of the mission is to keep his spirits up and not to gloom and doom . I did that more than I’d like to admit . Keep h8m out of self loathing and depression and it’s a win win . Good luck good wife .. with you by his side he has hope .. One day at a time ...
I am sorry to hear that your husband is suffering. Is he seeing an oncologist ? Even if he's not, his medical team should be able to help him with pain management. If they cannot, or are not willing to, I would seek a second opinion. I do not believe in this day and age, with all the tools/medicine available, that he should have to be in pain. I hope younand he can find some relief. I will keep you in my thoughts.
Thank You,yes he has an oncologist.. All they can do is give him oxy and flexed I’ll.. But he still has pain.. thanks for prayers..
There is good results with frozen gloves during and for 3 more hours after chemo. The FDA approved scalp cooling. I would use on toes as well. Ricks fingernails improved with the frozen gloves, he played 12 string guitar. He only did chemo when he had an organ metastasis, it did not do much for his bone mets. He lived 9 years after stage 4 having just an Orchiectome (testicles removed) but was also strictly vegan with minimal simple carbs after diagnosis.
Learning how to identify and treat sepsis and septic shock before going on chemo is a good precaution. Paramedics and ER need to know. cdc.gov/sepsis/pdfs/cancer-...
in reply to tetech
My sympathy
Why not have IMRT to all pelvic lymph nodes?
Not what you're looking for?
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