Hi to all my healing friends and happy holidays. I need a little help sorting this out in my brain and regaining HOPE in my heart. My dad has a had a cough for a while, but it as of late it has gotten much worse. In my gut, before chemo even started I feared pca already spread but was not yet visible, but no CT scan showed this. mri and pet scans never run. Wednesday ,we just did round 3 of docetaxel,and the doctor moved up the scan from 5 weeks to Monday because of the cough. First , please pray it is clear. Second, if it is not can anyone tell me how the treatment changes course? Has anyone anyone on here who had it spread to lungs and can you share your experience, please. Has anyone been successfully treated and what clinical trials if any would be appropriate? My profile has his treatment recorded . He is still on lupron,exgeva , and docetaxel every 3 weeks. Psa start 75 with 2 rounds of chemo it is 6.99. It's also taking a long time to drop by comparison to stories I've heard on here. 6 months and the Psa is still not where it needs to be. If indeed it spread to lungs, what is next, what changes ? thank you everyone for your continued support. I'm forever grateful, and right now I'm very scared and need input to regain the most important thing of all..Hope.
CT scan for possible spread to lungs:... - Advanced Prostate...
CT scan for possible spread to lungs:bad cough with no signs of infection or virus
I had PCa spread to my lungs almost 3 years ago. It had to be confirmed by a PET scan followed by biopsy of the largest nodule. I was put on Zytiga and that worked for me for 2 years--now it is probably time for something else. But I am very grateful for the 2 years. Good luck to your Dad.
Ty so much for the inspiration
Steve did you do chemo as well
I'm pretty sure the chemo will be next for me, but I won't be seeing my oncologist again until the end of January.
Good
enjoy your break from doctors. I know how difficult it is going back and forth to doctors. so woo hoo. no white coats until the end of January m keep us postrd. routing for you Steve xoxo
Thank you. I get my next round of scans in a couple of weeks so I should know better then what to expect. Thanks for your support.
How are you doing Steve . Sending healing light your way.
HI, yes, years ago I had a small lung "lesion" or two detected on CT. But as I continued on intermittent ADT it seemed to disappear. So far, it has not come back, so I'm not worrying too much about it. My point is that Lupron seems able to shrink some of these lesions.
Good luck to dad.
herb
Ty so much for the reassurance. I'm glad you are both doing well. since his cough got worse , any possibility it's from chemo Taxotere .? test moved to wed. due to insurance . grrrr. lol
Read the side effects of Xgeva i I believe you will find one of the side effects is persistent dry cough. I find mucinex DM extra strength (available over the counter) is helpful in suppressing the cough and loosening the chest congestion from the bronchio spasm that results from the persistent cough. Sometimes I even have to use an albuterol inhaler to relieve the bronco spasm. Going through an episode right now.
Ty so very much chascri. I thought maybe it was from the chemo . a year ago he had a cough and a nodule was found on lung that was never biopsied, and probably first sign cancer is passing through. CT scan showed lungs are clear. thank God. and thank you I just sent my dad your message. I hope you feel better. due to a guifennesin protocol I was on for fibromyalgia , I have large quantities of that med, though outdated it works so if you ever get stuck with money reach out I'll send to you xoxo
Thank you the scan is clear, there was previously a nodule on lung, but lungs are clear. as far as mets, some are only slightly smaller and some remained the same. after 5 months on lupron and 3 cycles of chemo, with exgeva started with chemo, I guess I expected more clearing. the psa is dropping very slowly 75 in increments has fallen now to 16.99 but it's taking long. with the scan results, does that mean chemo is not really working or is it simply too soon to tell . Ty I would love feedback . I'm worried
Cancer is a pretty much continual roller coaster of fear. More for the caretakers I think, but probably for the patient as well. And of course, death is pretty much a disaster.
If someone can figure out how fast PSA is supposed to fall, and what it means, that would be nice to have. Mine went from 80 to 2 in six months. Exponential decay - ie the graph looked like a hockey stick - collapse at first and then a smooth landing onto 2, followed by a slow take off.
My assumption is that the nadir number (in my case 2) corresponds in some way to the amount of cancer that is "castrate resistant", and that is the cancer that needs to be addressed by some other "modality". Sort of like there are 2 diseases. And it would be nice to know which one is where, so you can aim more effectively at the resistant portion, which has been there for a long time, but its presence was masked by the level of the PSA created by the regular cancer.
It is not like it turns into "castrate resistant" at nadir; its just that you can't ignore it any longer.
Ty Martin I understand . I'm quite afraid because from 75 5 and a half months ago the boss is 16 and very little change in tumors. I can't force him to another doctor and I know the cancer has mutated and some is not responsive to psa or that's my educated guess. I can beg and plead but I can't make him do anything as he's overwhelmed just by the chemo and trying to work 6 days a week. he seems calmer than me since they tell him things have gone in the right direction. but I've fallen into a very dark depression rt now and don't know how to get back up so I can be there for him. supporting his decisions I don't believe in is difficult and I realize I gave no control , so yes I'm very scared every single day. killing me to watch him hurt. I'd rather it was me. ty for your comfort
working 6 days a week is kind of amazing. this level of activity, in itself is good for him i am sure. your role as you note is to support him. it may be hard because you disagree, but even if you could be sure he was doing the wrong thing, and I dont think you can be sure, he is entitled to bet his life on his own judgement, so you really cannot be depressed at his decisions. At least from what you have said.
Thank you. I needed that . it's difficult because he's a,workaholic so nothing bothers him as much as not being able to work some days or having to leave. he runs himself down, doesn't eat right, won't take any vitamins, hasn't gotten the opinion from Sloan Kettering he's been putting off, and lastly the reason I do my research is also because he truly is not gaining knowledge about the disease because he only has energy for work and to get through day, so he is confused even on simple things like the side effects of a certain medicine, duration of treatment etc. the doctor said it doesn't matter what he eats because they want his body to be weak for chemo to work. that's ludicrous and dangerous in my opi nionand he eats horribly and is overweight . I don't want to take his candy away . I just wish he was with a specialist in urological oncology that works with apca. he isn't making time for his other opinion and as his daughter who he never told a year ago they found a nodule on his lung, I know how he puts things off , which is why he was diagnosed so late. I tried to get him to see a doctor two years ago. I told my family daddy is sick. I feel it I know it I'm worried, but he said he was fine. it took fractures throughout pelvis for him to get diagnosed. I'm frustrated because I'm scared as he would be for me. when his dog had cancer he did all this natural stuff but now with his own , he just follows what one doctor says. I've been in the medical system far too long and I know you must be in charge of your own health and doctors are not God and can often be very wrong. it's just frustrating because I truly believe he can live a good long life if he gets to a better specialist and fills some nutritional defecit. ty for listening to my rant. nevertheless, I'm more than proud of him, his humility, his bravery, his insistence on working, his refusal of pain medicine , his will , his laughter, his charm. I understand he's too weak to do the research and that's why I do, lol, so I can explain stuff to him and he appreciates it. I'm just petrified I guess. but yes I support what he wants. I just wish another doctor agreed on the current treatment because he's going on 4th chemo and 6 months of Lupton with a psa of 16 from 75. all I can do is gain knowledge, understand he chooses not to know some things right now because perhaps that helps him cope, and I'm at all treatments , his biggest cheerleader . I guess, as his daughter, correct me if I'm wrong , the best thing I can do for him is for him to see me happy , truly happy , and perhaps I need to work on my fears and myself so I can bring that joy to him as well. ty for listening. ty so very much. the reason I chose a forum of patients , not families is to understand the plight better from his perspective and experience and everyone has been helping me . I am grateful .
1. I assume: the fractures are from falls/osteoporosis not related to prostate cancer; the breaks were treated with screws; the orthopedist says he is free to move about the country. Falls related to instability. Both hips by now?
2. Tell him you think of him as your pet dog. Take him for walks, and to see the "vet" for metformin. Fitbit?
3. Throw away his crap food. Sugar. Candy. Potato chips. etc. Buy him steak if you have to, and salad bar.
ThaThanks for making me laugh . no the fractures are from cancer , treated with radiation for 2 weeks. not osteo. prostate cancer spread to the sacrum and caused fractures misdiagnosed previously as herniated disk .
2. he just got a script for physical therapy
3. I could never take his twizzlers I want him to enjoy lif4. he runs around do much for work it's hard to get exercise in while also under chemo so I'd walk with him any day but I'm disabled and can't walk very much or well.
4. I copy and paste information and studies I think he should be aware of and send them to him, but he's exhausted and can't take it all in. so he's not yet open to nutritional therapy or new studies.
Thanks for making me laugh. all I can do is my best,,and that's what I'm doing. I just want to fix him as he as a father did for me so much. it's hard knowing I have no control over this disease . I just want him to get another opinion and I'd feel safer for him, but I can't force him and I must support him. when he's open to other things hell come to me. I save and print and highlight articles, etc. I'm a good daughter lol I hold off on most not to overwhelm him as he seems to be dealing with this better than me. then again he hides his pain because I'm his daughter xoxo ty Martin
Hey the falling PSA is still a very good sign. You will recall mine dropped relatively quickly but then plateaud around 2 for several months. I do recall an annoying cough and 10 months later I am constantly collecting whatever cough is doing the rounds. But I have completely clear lungs. My Zytiga great for the PCa but my kidneys and diabetes not happy so work to be done. Good luck with your dad. We're all here for you both. David
Aww scruffy, that was such a kind message and one I really needed. I'm glad the zytiga is working. His exhaustion and weakness now is getting difficult to take in, because I just want chemo behind us and Id rather be the one hurting. I'm so sorry you have to fight so hard and bare the nuisance of every little sniffle that goes around, but I'm so so happy treatment is working and that you do sound upbeat with a good quality if life my best to you. Ty for your support. Hugs, don't worry I'm not sick you won't catch anything lol keep on truckin!
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