Why no pain at all ??: Just wanted to... - Advanced Prostate...

Advanced Prostate Cancer
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Why no pain at all ??

whatsinaname
whatsinaname
140 Replies

Just wanted to know whether it is "normal" not to have any pain at all, despite having multiple mets to the bones and lung.

I have been on treatment for almost exactly ONE YEAR now and have taken Casodex (14 days), Eligard (almost a year), radiation therapy (38 fractions), docetaxel (6 cycles).

I have not experienced any pain of any significance yet. Is this normal ?? If not, then what could be the possible reasons for not getting any pain at all ??

Thanks, Guys, for your replies.

140 Replies
oldestnewest
Tall_Allen

Talk about looking a gift horse in the mouth!

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whatsinaname

Do you know the answer to my question ?? Can you venture any guesses ??

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Schwah
Schwah
in reply to whatsinaname

Many of us have (or had) visible bone mets with no pain whatsoever. Very common in the early stages of the metastic stage as I understand. However, over time, if and when to disease progresses in the bones, the pain will suppssedly come. Hopefully therer will be adequate help to alleviate the pain. If I’m wrong here, I’m sure the smarter talking heads here will correct.

Schwah

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whatsinaname
whatsinaname
in reply to Schwah

Thank you very much, Schwah, for your reply. I much appreciate your taking the time and trouble to reply to my query.

I wish you all the very best. Cheers !!

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Tall_Allen

I've never before heard of anyone worry that he doesn't have pain.

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sosilly6
sosilly6
in reply to Tall_Allen

Seeking better understanding of the situation is reasonable.

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Tall_Allen
Tall_Allen
in reply to sosilly6

There is no "situation" in this case, other than a patient causing his own anxiety. Making problems where there are none is only a way to increase anxiety.

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whatsinaname

I had almost no pain before the chemo began when the "mets" were less. After 130 days (almost 4.5 months) of chemo (6 cycles of docetaxel) , the "mets" have increased in both size and qty, yet there is still absolutely no pain. I was curious to know WHY. I am neither anxious nor worried. After all the replies I have recd, I now know that this happens to a lot of others as well. End of topic for me.

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sosilly6
sosilly6
in reply to Tall_Allen

Why you think he is making problems is beyond me. He is asking for better understanding Getting more information is key to reducing anxiety, not increasing it, in my experience.

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Tall_Allen
Tall_Allen
in reply to sosilly6

When one worries about a pain one doesn't have, it is a reflection of anxiety.

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adlerman
adlerman
in reply to Tall_Allen

or just curiosity?

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sosilly6
sosilly6
in reply to Tall_Allen

Maybe, but so what? If so, information would help to reduce the anxiety.

The guy has diagnosed bone metastases and is wondering why he has no pain. Valid question. Period.

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SuppWife
SuppWife
in reply to sosilly6

It read to me like he was wondering, not worrying. I don't see that he said he was worried he has no pain. But whatdoIknow.

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Tall_Allen
Tall_Allen
in reply to sosilly6

I have learned that patients often create our own anxiety and nurse it. It is important to break the cycle in order to relieve suffering. if you have a cold, do you wonder why you don't have fever or pneumonia? Of course not - you are just happy you don't. Cognitive behavior therapy encourages one to avoid catastrophizing. We can't stop questions from floating through our mind, but we can recognize how we create and exacerbate our own anxiety. i consider it non-supportive to encourage such catastrophizing.

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sosilly6
sosilly6
in reply to Tall_Allen

My perception of your comments is that your first response was to chastise and quiet someone when he wondered why he had no pain. After you got some feedback, it seems you are now backpeddling in justification.

I am on this site as my husband has metastatic prostate cancer. He, too, has no bone pain and found the links about pain perception shared in this dialog helpful.

I am recently recovering from my own, highly aggressive neck cancer. I am reminded of the time my radiation oncologist told me 'not to ask questions, just get my mind off of it'. Ridiculous advice since asking questions and advocating for my self saved my life.

I see that you are a patient advocate. I hope that you believe that a patient needs to get information. When you try to quiet someone's questions, that goes contrary to their involvement.

I have over 40 years of experience dealing with anxiety as a licensed clinical social worker. There are people who would rather not know as they feel it would increase their anxiety, and people who find information lowers their anxiety and increases their competency to deal. The former does not ask many questions, while the later does. It is important to support each individual to find what works best for them. Interestingly, research shows that the people who ask questions tend to have better rates of survival.

How many times have we heard; no question is a stupid question. I hope on this site that no one's questions be treated that way.

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Tall_Allen
Tall_Allen
in reply to sosilly6

Your perceptions have no basis in reality, but I can't argue with what you make up in your head -- I stand by my initial remark "why look a gift horse in the mouth?" There is no backpedalling - just explanation for you because you clearly did not understand. I did not criticize asking for information, I criticized looking for suffering where there is none. I guess you are incapable of making that distinction. If you want to continue to kidnap this thread - I suggest you PM me, as it is less than helpful for the OP.

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whatsinaname

Superb reply, sosilly6. You obviously understand the psychological aspects of this exchange very well indeed :-) I read through your reply thoroughly and enjoyed and agreed with every bit of it. Thank you for such a well thought out written reply.

Cheers, sosilly6 !! All the best to you and your husband. Enjoy life !!!

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sosilly6

Thank you whatsinaname. The best to you!

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ewhite999

He’s not worrying. He’s asking a reasonable question. Chill dude

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whatsinaname

Absolutely, ewhite999.

Thank you and all the very best.

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Survivor1965

Kind of mean

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SuppWife

Hello, I have no personal experience with this and my husband has not had any bone mets identified, but I have read many men say they’ve had multiple bone mets but no pain at all. My best to you.

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whatsinaname

Thank you very much, SuppWife, for that piece of information.

Very interesting to say the least. I was totally unaware of the fact that

one can have multiple mets to the bone and elsewhere and be in no pain

whatsoever. Thank you for enlightening me.

Thank you very much also for your good wishes. Cheers !!

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sjc2
sjc2
in reply to whatsinaname

There's nothing wrong with asking your questions, that's what we are all here for, to help each other! Everyone is different and we all wonder about different things in this fight, no one should belittle someone for asking a question. If you don't agree with someones question, just don't reply... it's mean to answer in a negative way! Praying you will continue to have no pain, God bless you!

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whatsinaname
whatsinaname
in reply to sjc2

Thank you, sjc2, for understanding.

All the very best to you, sjc2.

Cheers and enjoy life !!

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gregg57

The simple explanation is: You are very lucky!

I was discussing pain with my doctor on the last appointment. He said that it's often difficult to try to correlate specific pain or a lack of pain with progression of mets. Every time I have some pain, my first thought is CANCER!!! Sometimes it's obvious when you have pain in one spot and it's a met, but other times it gets confused with maybe some arthritis, or a muscle attached to a bone that has mets, or maybe some effects of treatment, or even some healing going on in existing mets. It's difficult to sort out exactly what's going on. Usually, we worry when we have pain, but I can also see worrying when you don't. Cancer is just something that it's easy to worry about no matter what is going on or not going on. We all have to develop strategies to deal with this aspect of having advanced PCa. It's not easy, I know that.

Pain is an important symptom to watch, but it's somewhat subjective. I have aches and pains that come and go. I'm not concerned unless something doesn't go away or is getting worse and worse like before I started treatment.

If you really want to know specifically what's going with your mets, imaging will tell you. My imaging showed a major improvement in my mets after treatment. That made sense considering how much less pain I have now. Maybe the same has happnened to you. Have you had any recent imaging after one year of treatment? Your mets may have significantly healed. That does happen.

In the meantime, enjoy and appreciate your pain free quality of life. I sure do after going through hell when I was first was diagnosed.

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whatsinaname

Thank you very much, Gregg57. That was a comprehensive reply that almost completely satisfies me.

Imaging showed a huge increase in size and qty of mets from 10/13/2018 to 2/23/2019 just a little over 5 months. Therefore, the absence of any pain at all surprised me. And, just as imaging helped you understand the lack of pain, it baffles me, though I am happy with the lack of pain. Not just happy, but thrilled :-)

Thanks once again, Gregg57, for your excellent reply and good wishes. I wish you all the very best as well. Cheers !!

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Crabcrushe

You have an outstanding attitude; that only helps in any situation.

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whatsinaname

Thank you very much, Crabcrushe :-) Cheers !!

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gregg57

You can be happy about the pain, but concerned about the increase in mets. Where are the new mets?

Have you looked into second-line ADT such as Xtandi or Zytiga?

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whatsinaname

1) The new mets are in the right skull, the spine, the thighs. I will know exactly where else once the latest scan report is in my hands on the 26th of February.

2) Not yet, but am most likely to be put on either Xtandi or Zytiga. Which do you think is better and why ?

Thanks very much, Gregg57.

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gregg57

I think they are both good and have similar results for progression free survival and overall survival. I believe Xtandi has a small advantage in overall survival, something like a month. Xtandi has had more problems with fatigue which is why I went with Zytiga. Zytiga requires daily Prednisone but the dose is small, just enough to replace what you are losing.

In terms of cost, there is a generic version of Zytiga now, but I don't believe it's available outside the US. For those who can get access, the cost of zytiga would be signficantly less than it was before the generic.

What's been happening with your PSA and Alkaline Phosphatase over the last 6 months?

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whatsinaname

1) In Bombay, Zytiga is available for INR 15,000/- for a month's supply. Xtandi, otoh, costs INR 54,000/- for a month's supply. So, if there is no huge quality difference between the two, I would prefer to go with Zytiga (3.6 : 1). Instead of Prednisone, could I use Dexomethacine along with Zytiga ?

2) My alkaline phosphatase has been superb at around 90 (range 40-150). My PSA just does not seem to fall below 5.3. It has varied between 5.3 and 9.3 despite docetaxel & eligard.

Thanks again, gregg57 for all the trouble you are taking on my behalf. Much obliged.

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gregg57

Dexamethasone is being used as an alternative to Prednisone although it is not "officially" approved as far as I know. The Zytiga trials were done with Prednisone so most US doctors will prescribe it. It has been shown that when Zytiga fails, switching the steroid to Dexamethasone will often prolong the response of Zytiga (SWITCH trial).

My plan is to do this when Zytiga starts to fail, I've already got approval from my doctor. After that, I may try Xtandi. There is cross-resistance between Zytiga and Xtandi, but might be possible to get a few months or even more. You could also try this approach.

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whatsinaname

Thank you, Gregg57. Your suggestion makes a lot of sense.

Thanks again and all the very best to you.

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Jbooml
Jbooml
in reply to whatsinaname

The alkaline phosphate readings may suggest your Mets aren't osteoclastic...this may be the reason you're not feeling as much pain....i'm like you...the only pain i felt was in my joint ligaments and tendons...its reasonable to think that the blastic nature of the cancer primarily degrades bone attachments....do you have joint mobility and stability issues. like you're going to split apart in vulnerable squatting positions...especially trying to pivot out of such stances. Luckily these are much on the decline as i'm responding to ADT.

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whatsinaname
whatsinaname
in reply to Jbooml

Great insights, Jbooml !!!

I find it almost impossible to squat. Fortunately, I don't really need to. And, yes, "stability" does pose an issue from time to time, overcome through sheer mind control. For me, ADT (eligard) has failed & now docetaxel has also proven more or less useless.

Thanks for replying, Jbooml and all the very best to you.

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tom67inMA

I also have many Mets and only some of them hurt. If I recall correctly, the left side of my hip has a blastic lesion and that doesn't hurt. The right side has a lytic lesion and that's where the majority of my pain has been. Not sure if that's meaningful or just a coincidence.

I've also read that cancer cells can produce prostaglandins which cause inflammation and pain. Normal cells do this only when there's injury. Cancer cells do this because they're just assholes.

There can also be a nerve component to the pain. The cat just walked across my lap and when he stepped on top of my thigh, I got pain in my back and outer thigh, but not where he actually stepped.

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whatsinaname

Thanks, tom67inMA.

Your situation is slightly different from mine. Though my mets have increased both in size and qty, I get no pain whatsoever.

Thanks again, tom67inMA. All the very best to you.

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Jbooml
Jbooml
in reply to tom67inMA

I should have read down to your post tom....i'm starting to put this sh!t together...despite the crap I get fed by medical 'experts'....how the he!! did you find out you had two differing ontogenetic lines causing different bones Mets...fascinating....please keep me informed.

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tom67inMA
tom67inMA
in reply to Jbooml

It was in the summary of my CT scan, they described the type and location of the major lesions. I'm implying the different lesions may affect pain/ no pain, but have no proof.

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Jbooml
Jbooml
in reply to tom67inMA

I totally agree with your speculations on osteoblastic variants....i wasn't CT scanned til after a couple months after my initial DX.....when i was CT'd i was only given an iodine dye and was under the impression it was to further locate visceral Mets...which I was surprisingly told, were uninvolved...i'm not sure what to believe now. The specialist told me I had a heavy load of Mets throughout my spine, ribs etc....which was not the case as told by a urologist from my bone scan..claiming i only had Mets in my upper femur....i'm saying all this as i haven't had much of any pain despite that, as my MEDONC assured me, my (presumed osteoblastic) bone Mets were prolific.

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Trecento
Trecento
in reply to tom67inMA

I LOVE your attitude: 'cancer cells do this because they're just assholes'. Let's not tolerate that sort of bad behaviour!

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Break60
Break60
in reply to Trecento

😂😂😂

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mcp1941
mcp1941
in reply to tom67inMA

Very clever assholes!

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pjoshea13

Most PCa bone mets are osteoblastic lesions, i.e. with increased bone production. They are associated with pain but that's not universal. In an unscreened population, a minority of men will be diagnosed after a fracture, so it can be a mixed blessing.

I was never big on doing bone scans & my first was due to hip pain. However, there was only a solitary lesion at L5, and it was causing me no problems at all.

Before there was interest in treating oligometastatic PCa, bone mets were only treated to alleviate pain. However, I found a radiation oncologist who was willing to treat. He was surprised by the lack of pain & that I hadn't already had a fracture. Five years after treatment, that is still the case. But I'm not tempted to go sky diving.

-Patrick

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whatsinaname

Thank you, Patrick.

Very interesting post, learnt a lot. Humorous as well, especially the sky diving part :-)

Cheers !!

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Break60
Break60
in reply to pjoshea13

The way folks just glide to the surface without falling makes skydiving pretty safe these days🤕

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monte1111
monte1111
in reply to Break60

The pretty safe part bothers me a little. A least 20 deaths at one Lodi, Ca center since about 1980. Pretty awesome when driving down the 99 and seeing people float over the highway. I am sure your odds of getting prostate cancer is much greater than splatting. Enjoy.

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Hirsch

Leave the casodex. Try Abiraterone first. If no good results, your doctor may switch you to enzalutamide. Have you had chemo?

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whatsinaname
whatsinaname
in reply to Hirsch

I quit Casodex after 14 days, right at the outset. I think it was only meant to usher in my treatment on Eligard. I am still on Eligard right now. Eligard has brought my testosterone levels down to below 10 but has not succeeded in keeping my PSA in check.

I have just finished 6 cycles of docetaxel. Did nothing positive for me.

I will probably do Abiraterone + Prednisone now. Let see.

Thanks, Hirsch, for taking the time and trouble to write to me.

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drsridhar53

How did you conclude that Doce was not effective? I have just finished six cycles. There were a lot of side effects, loss of hair, taste, some diarrhoea, lot of giddiness and instability, probably due to peripheral neurosis of the feet, great fatigue!! The treatment is a killer!! My Onc is saying nothing yet about any test to find if the treatment did any good.

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whatsinaname

Hi Dr Sridhar,

I did a PSMA based test on 23/2/2019 at Breach Candy. Its called the F-18 DCFPyL and it showed that both the number of mets and their size had greatly increased from the time I began chemo, approx 130 days back. My PSA has come in at 10.53, up from a low of 5.3. Almost doubled.

Soooo, 6 cycles of docetaxel cost me a few lakhs, a lot of time & effort, poison in my body ---I too lost a lot of hair---and the most important hangup of all was the fact that for these 4.5 months I did not take any effective treatment for my metastatic prostate cancer. Perhaps, I could have taken Abiraterone or Enzalutamide. Or maybe Zofigo & Provenge. Or maybe Lu-177-PSMA-617.

Lets hope your situation is not as bad as mine and your mets have reduced as a result of docetaxel. Fingers crossed. Cheers, Dr, Sridhar !!!

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Break60

That really sucks which is why I’m disinclined to have chemo 😡

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monte1111
monte1111
in reply to Break60

Seems like you having been doing well for a long time without chemo. That is outstanding! On the other hand, the lupron, the chemo, or the lupron plus chemo did very well for me. So much of this crap seems to be just trial and error, and hope you get lucky. And don't splat. Enjoy.

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Filotimo62

Hi. I work in the area of pain as a psychologist. In the last decade the science world has been using a new model of pain. The neurosciences have made excellent headway into pain science and thus pain management. One of my very hypnotisable clients recently told me that changing his brain hasn't worked well for him, but meditating and imagining breathing through his Left side and then through his body and then out through his right side has reduced severe pain that he has had for 15 years by 50%. This works for some people. ALL pain is a construct of the brain - even cancer pain. I have had 2 clients bitten by sharks and no pain for hours - then they felt pain only when they were on the way to the Hospital. This explains your no pain.

Have a look at some great research that's being done in Australia in the Pain Sciences.

bodyinmind.org/editors-pick...

Good luck. Stay positive and that way your brain wont be scanning for danger (and this becomes a pain message).

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whatsinaname

Thank you very much, Filotimo62. Amazing stuff there. The BRAIN is really a fantastic organ. Really needs to be studied and explored a lot more, imho.

Thanks again, Filotimo62. Yours was easily the most interesting reply I have received thus far. Others like Gregg57 were very good, but your reply completely changes the way one should look at pain. Any books on the subject that you could suggest ?? Thank you very much, indeed.

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Filotimo62

Can I suggest you watch some of these videos on Youtube:

Lorimer Moseley "why things hurt"

"I cut off my arm to save my life"

"0:26 / 3:45

Illusion could halve the pain of osteoarthritis"

The brain is stunning and we are only at the beginning of learning what it can do. We use 100% of our brain (the myth is that we use 20%) and it uses a 1/3 of the calories we eat!

Have a look at Dr Normal Doidge's tlaks on the brain:

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whatsinaname

Thank you very much, Filotimo62.

I will go through each video in detail & revert if required.

Thanks for taking the time and trouble to post all these videos.

I am looking forward to watching these videos. I'll do so in the next hour or so.

Cheers !!

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whatsinaname

Have just bought 2 books of Norman Doidge on Amazon.in.

The books are titled :- a) The Brain that changes itself : Stories of personal triumph from the frontiers of Brain Science b) The Brains way of healing : remarkable discoveries and recoveries from the frontiers of Neuroplasticity.

Thanks again, Filotimo62 for those fantastic videos.

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Filotimo62

Those books are fantastic - well written and very readable - you don't have to be a neuroscientist to understand the concepts and the science behind the brain. Norman Doidge has made a complex subject very understandable. My patients love them. Happy reading.

There is lots of stories about hypnosis and the improvement in immune function but little large scale research has been done on it (Pharma companies can't see the $$ in this so rarely funded). Nothing bad comes of it, but lots of good outcomes. Some articles on this tandfonline.com/doi/abs/10....

ncbi.nlm.nih.gov/pmc/articl...

researchgate.net/publicatio...

If you are interested in trying look up hypnosis for immune function on Youtube - there are lots of posts on this. Then you can fine tune for yourself and self-hypnotise whenever you have a spare moment. Doesn't have to be for 30 mins, you can do short bursts for 1-2 minutes. Its all about the brain!

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whatsinaname

Thank you very much, Filotimo62.

I was soooo impressed with the videos that I bought the books (will get them by tomorrow). If and when, I start getting pain, I will be ready :-)

Thanks again, Filotimo62. I am very happy that you intervened in this thread and offered me a new opening. Much obliged.

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Filotimo62

Happy to answer any questions or make some suggestions when you have read the books. Also happy to make you a hypnosis track that I can load onto a dropbox and you can open up. Take Care, Maria P :)

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whatsinaname

Thanks again, Filotimo62

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Filotimo62

Sorry... Maria is my name (my partner has Gleeson 8 prostate cancer and he is having surgery next Tuesday).

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whatsinaname

I edited my post because that's what I suspected :-)

Lets hope that your partners surgery goes off well, without any hitches.

Thanks very much, Maria, all the very best.

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ctarleton

Not everybody gives Norman Doidge high reviews in all regards, e.g.

medium.com/myndplan/would-y...

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whatsinaname

Excellent review. Differing views are always welcome. I will receive the books by tomorrow and should finish them by Sunday latest. I will know by then whether they were of any good or not. Lets see. My mind is open.

Thanks, ctarleton. I am usually ALWAYS skeptical, though you may not figure that from my replies :-)

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Filotimo62

No. I agree they don't. He is moving away from the basic bio-medical model of health that treats humans almost like machines and not as evolving biological creatures. Have a read of his books or watch his videos - its only a small snapshot of what other great neuroscientists are doing all around the world. Then see what may work for you.

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Harry-B

I have similar bone met load and also no pain. Allen is right. Enjoy the lack of pain as the disease will progress and then there is plenty. All the best. Harry

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whatsinaname

Thanks, Harry-B. All the best to you too.

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Zetabow

I would say you're very lucky. I myself have had terrible pain (Mets down to the marrow), three months into treatment and Doctor has got my pain levels down to respectable levels. Apart from the normal constant ache pain I had very strong lighting pain through legs, it was like electric shocks and was jumping-twitching even in my sleep, glad to say these pains seem to have gone and just dealing the the aching pains now. Good luck.

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whatsinaname

Thank you, Zetabow. Lets hope your pains stay gone forever. Cheers !!

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boseley
boseley
in reply to Zetabow

Your pain sound similar to mine. What pain meds are you taking please.

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Zetabow
Zetabow
in reply to boseley

prescribed Paracetamol-Codeine and Tramadol, original PSA was 1386, down to 21 at moment, third round of Chemo on Wed.

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charlesmeyers1964

lungs aren't bones, i have some mets in my back no pain, some in my rib no pain don't worry feel great that u aren't and leave it at that

charlie

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whatsinaname

Thanks, charlesmeyers1964. All the very best to you.

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Bebby1

I think the completion of docetaxal course could be why

We were told the Mets tend to shrink if course completed ( not eradicated)

My husband could only tolerate two of the six

Hospitalused with sepsis numerous times

Dr said it would be fatal to continue

I’m happy you are pain free

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whatsinaname
whatsinaname
in reply to Bebby1

Thanks for taking the time and trouble to reply, Bebby1.

I do hope your husband is doing better now ?

Docetaxel was a DISASTER for me inasmuch as my mets greatly increased in size and qty.

I tolerated the chemo quite well. I have lost 80% of the hair on my head but otherwise did not seem to encounter the side effects that most people do. No nausea, no pain in the fingers and toes, no lack of apetitite, no dysentery, etc, etc, etc, etc.

Thank you for your good wishes. All the best to you and your husband.

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Bebby1
Bebby1
in reply to whatsinaname

My husband is currently on just zoladex

Three monthly injections

Stopped the Cosudex late December as PSA started to rise and oncologist said needed to stop

Commenced monthly injections for bones ???

Will start enzalutamide in March

Expecting side effects to be a bit stronger

But for now he is feeling good

Takes slow release analgesia low dose) twice per day and the occasional Panadol

Everybody is so individual

Same book

Different pages

I wish you all the best

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whatsinaname
whatsinaname
in reply to Bebby1

Yes, I agree that we are "same, but different".

"Same book, different pages" ---sums it up brilliantly.

All the very best to you and your husband. Take care.

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monte1111
monte1111
in reply to Bebby1

Hoping xtandi will open a new book for you. Most take in evening or before bedtime. MO started me out day one with prednisone 2 5mg per day. Her reasoning was for fatigue. I have cut to 1 per day and do have noticeably more fatigue. Most do not take prednisone with xtandi. Prednisone may help with pain? If you tell MO you have aching pain may prescribe Celebrex if you ask. Just some thoughts.

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Bebby1
Bebby1
in reply to monte1111

Thank you

I’m a registered nurse

Can’t get my head around the steroid use with bony Mets as we know any steroid will compromise bones long term

He has a pacemaker got it at 50 for low pulse rate ( he is now 64)

Called “sick sinus syndrome”

Otherwise cardiac status great

He cannot have anMRI due to the magnetic side of things so had a PET scan which is expensive but very clear

Bony Mets from skull to knees with few exclusions

Lymph node involvement heavy also

I know he hides pain

But is now very happy with low dose slow release analgesia

He loves life

Buries his head a bit

I feel sad for each and every one of you guys

Stay informed

Keep sharing

And again

Thank you

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lincolnj8

Like you I have little or no pain. Stage 4 cancer in bones, lymph nodes and organs. Like you I've been at this for little over a year. Had pain in ribs, but it went away. Sooo happy about being pain free. On zytiga, prednisone and Lupron. Also happy to be alive.

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whatsinaname

Hi Lincolnj8,

I was trying to go through your old posts and will do so in a while. We do have several similarities. I have failed Radiation therapy, Eligard and Docetaxel, thus far. I now hope to start on Zytiga + Prednisone. Meeting with quack scheduled for 2/27. And, another quack on 3/1.

All the very best to you. Stay pain free and enjoy life.

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lincolnj8

I never had radiation. Just Zytiga, prednisone, Lupron plus b-12 shots every time I see them. Also a monthly infusion to strengthen the bones. 14 months ago my hemoglobin was around 3 (should be 13.5). My phosphate number was 3000 (should be 120). Psa 800 now under .1 Took 4 pints of blood to stay alive. The medical oncologist that found me in the hospital wasn't too worried bone mets or lymph node mets or spots on organs and lungs at the time. He was just happy that I lived. This is interesting,

"In October 2011, the USPSTF (US Preventive Services Task Force) recommended against PSA-based screening for prostate cancer. They emphasized that their recommendation applied to men with no symptoms that might point the presence of prostate cancer." Well, I never heard of a PSA test. My doctors decision not to give me a PSA test all those years nearly cost me my life. Money was saved and lives were lost. Best of luck to you and we will be pain free. Like you said, "enjoy life". I enjoy every day. Thank you whatsinaname.

3 likes
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monte1111
monte1111
in reply to lincolnj8

Yeah my first psa test at age 66 years (because I left my old doctor of 17 years because of retiring and going on medicare) was a shocker. Think new guidelines say men over 60 years probably should not be tested. Had a blood test because of a gout episode. I have the paperwork. Checked cholesterol, liver and everything you can think of. But not psa. Just one checkmark may have been the difference between cured and incurable. I believe everyone over the age of 40 should be required to have psa tested. Costs next to nothing. Matter of fact full blood work panel. Catch a lot of these diseases in the curable stage. Preventative maintenance. Opt out if you want to. Why wait till the tires fall off your car?

3 likes
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Bebby1
Bebby1
in reply to monte1111

Hi

Not sure where you are but here in Australia it is recommended second yearly from 40

However there is no recall or prompting

Any cancer is evil but here with breast we are reminded by mail ( personally ) as women secondly yearly to have mammogram (free over 50)

Prompted with advertisements via tv etc

Prostate cancer takes more lives yearly than breast

My hope is to instigate the same format for men

My husband had last PSA 17 months prior to diagnosis .... 2.4.... so clearly aggressive

Now Gleeson 10 stage 4

Yes the money saved costs lives

Lives full of life and memories

I have annoyed every friend and family member and colleague to have a blood test

All the best

4 likes
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lincolnj8
lincolnj8
in reply to Bebby1

Me too, even told men on facebook. If your doctor won't do the PSA test, get another doctor!!

2 likes
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lincolnj8
lincolnj8
in reply to monte1111

Excellent reply monte111

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Redlog

You are not alone in worrying about no pain. I am in a similar situation with mets in most of my bones. I have mild to moderate discomfort. I think it is normal to wonder what is going on in your body and what to expect. We both can be assured the cancer will answer all our questions in due time.

3 likes
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whatsinaname
whatsinaname
in reply to Redlog

Yep, that was a realistic reply, Redlog. I am 100% sure you are right.

Cheers and all the very best.

Reply
Jbooml
Jbooml
in reply to whatsinaname

You’re on our frontline now WIAN....I’m going to watch you like a hawk because you represent the furthest outlier of this disease...castrate and Chemo resistant. It’s looking to me like you’re what the researchers are most interested in, possibly fibroblastic fgf developing neoplasm...This oddball suggests non glandular oncogensis treatable by newer drugs and tactics...I wouldn’t hold much hope out for aberaterone....rather I’d be consulting these guys..

ncbi.nlm.nih.gov/pmc/articl...

very heady stuff, suffice to say there are a myriad means for the ‘wild child’ to manipulate the fgf signaling pathways to pursue its malignant ends....something I’m determined to understand and deny.

I’ve only become aware and interested in this arena of research but I do believe it relevant to many of we sufferer’s eventual crossroad choices.

These neoplasms may be heralded by these biochemical markers and treatable in their enzymatic antagonism...and with cancer stopping unwanted processes may prove far easier than starting their counterparts up again?

ncbi.nlm.nih.gov/pubmed/290...

All very new and evolving before our eyes

I do have to add that if you are PSMA avid I’d be first in my neighborhood to select its belied therapies as a next line treatment.

I thought about a go fund me page as a means to pay for it earlier in my history....but being highly AD sensitive I’m strictly forbidden in partaking for now.

I’m wary to take such active license with your condition but as you know we all stand together against this beast or fall alone.

1 like
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whatsinaname
whatsinaname
in reply to Jbooml

Sorry, Jbooml, your stuff has gone waaay above my head. I don't have a clue as to what you just wrote :-) Sorry, my bad.

"These neoplasms may be heralded by these biochemical markers and treatable in their enzymatic antagonism" ?????????? Too much for my brain to comprehend, Sir. Just too friggin' much :-)

I think I'll pour myself a large Scotch, play some rock roll music and read a good ol' PG Wodehouse. Life still has some simple pleasures left. Especially after hearing about neoplasms being heralded in their enzymatic antagonism :-) And, I thought James Joyce was tough to understand. Live and learn :-)

Cheers, Jbooml. Thank you for trying. Some skulls (mine) are just too thick :-)

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monte1111

I shall join you in that large scotch and rock and roll. James Joyce, opera, modern art and a lot on this site leave me scratching my balls. Oh, wait. I don't have any anymore. But there is an astounding amount of knowledge of here. I have no serious pain after 2 years in. (Not counting the back fracture I had before being diagnosed and told it was because of cancer in the bones. Thought just a sprain and didn't go to dr. Very painful 3 weeks on couch. Took months to get back to normal.) Aches, pains and stiffness. Very low on the meter level. I am taking prednisone, gabapentin, and celebrex for different reasons. But each of those could be helping with pain and I do not realize it. Best of luck to you whatsinaname.

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whatsinaname

Thank you, monte1111 and heartily reciprocate your good wishes.

Cheers and live well !!! :-)

Reply
Jbooml
Jbooml
in reply to whatsinaname

So sorry...I have an annoying over the top way of expressing my sometime brainbarfing reasoning...you might simply check out the links..its got to do with these queer evolving cancer lines...and i dont have to tell you to not worry...amazing attitude...i have every confidence you cant miss with such easy acceptance.....did you say you were in India...wouldnt happen to be janesy? That would explain a lot.

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whatsinaname
whatsinaname
in reply to Jbooml

Thank you, jbooml, it was totally my fault, not yours.

I will certainly check out the links. Thanks again.

Yes, I am an Indian citizen, Bombay based. My name is Carlos de Souza.

I know a strange name for an Indian, but my forefathers were from Goa.

And, Goa was colonized by the Portuguese from 1492 till 1961.

Your style of writing is fantastic, honestly. I love it. Though, sometimes I cannot keep up on the "cancer" story. Cheers, jbooml !!! :-)

Reply
Jbooml
Jbooml
in reply to whatsinaname

My wife and I are visiting India this fall...if the crops don't fail and the river don't rise ..for a in-law wedding...I'm desperate to visit Ladakh and Hunzakut at the same time...this could prove difficult seasonally. We're going to be moving around India quite a bit ultimately flying out of Delhi. My wife's the consummate traveller i just sign the passport and visa's where applicable...love to meet you Carlos...my name's Jeff...We live in the Canadian Rocky Mountains.

1 like
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whatsinaname
whatsinaname
in reply to Jbooml

Hi Jeff,

Let me know when exactly you are visiting India and which parts of India you intend to visit. Lets see if we can meet up ?? From late August right up to early October, my wife and myself are planning a trip to France and Paris, if health permits. So, that period is probably out. E-mail me on carlos501b@hotmail.com and let me know your plans, whenever you are ready.

Cheers and all the very best,

Carlos de Souza.

27th February, 2019

07.26 IST Bombay, India.

Reply
Jbooml
Jbooml
in reply to whatsinaname

Got it. You'll hear from me. Best of wishes and health.

1 like
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whatsinaname
whatsinaname
in reply to Jbooml

Recd yr e-mail and sent you a reply.

Cheers,

Carlos.

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Survivor1965

I e had bone mets, femur, spine, ribs, frontal bone (forehead) and don’t think I ever had any pain from them. They were small and showed up on the C-11 scan. Seems reasonable that if left to grow larger they would start to be painful. Luckily the meds are working for now. It’s a good question, I have wondered the same thing.

It is good to hear you are pain free!

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whatsinaname

Thanks, Survivor1965.

I too hope you stay pain free for as long as possible.

Cheers !!

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larry_dammit

Wow. Wish that was true for me, guess your pretty luck guy , hope it works that way through out your battle with the monster 🙏🙏🙏

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whatsinaname

Thanks, larry_dammit. I hope so too, but I am much too realistic to expect I will stay without pain indefinitely. And, I have already been warned to expect the worst.

Hope things are not too bad with you ?? Try to relax and enjoy life. Cheers !!

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Dominos7

sounds like the meds are keeping it all at bay. well done long may it continue.

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whatsinaname

That is what I thought as well, Dominos7. Thank you.

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ROLNCIN1

Hi W. ,

MY HUSBAND HAS HAD METS TO HIS SPINE, PELVIS AND RIB FOR 8 YEARS AND HAD NO PAIN. ALTHOUGH 1 MET AT A TIME.

I BELIEVE IT HAS TO DO WITH SIZE OF MET.

HOPEFULLY YOURS ARE SMALL.

BOOGEE

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whatsinaname

Most are small. That could be the reason.

Thanks, Boogee. Cheers !!

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jsmith2506

I have 4 small mets in pelvic region (stage IV, Gleason 9) I've been treated for 2 years now and never experienced any pain in the pelvic region at all. I've had some mild discomfort some days for a few hours, but not very often. Not sure why, but I'm not complaining, LOL

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whatsinaname

Thanks for that info, jsmith2506.

No pain is good. Enjoy life. All the very best.

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RonL

Two years ago I became castrate resistant and a scan revealed half a dozen bone mets. Since being diagnosed over six years ago I haven’t experienced any pain related to PCa.

1 like
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whatsinaname
whatsinaname
in reply to RonL

Thanks, RonL.

6 years and absolutely no pain is fantastic.

Cheers !!

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Break60

Don’t worry be happy! 😊

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My husband had bone mets at time of diagnosis and no pain, either. MO didn't have an explanation for it, either. We're just thrilled, because we do believe that ... down the line ... the pain will come. He's been on Lupron since October, and has undergone 4 docetaxel infusions with 2 to go. Wishing you good luck!

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monte1111

Best of luck. By the way, I had dexamethasone before and day of chemo. No prednisone until I started Xtandi. The dex. gave me insomnia for 3 days. Did not like it. But made it through 8 cycles. You are almost there!

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whatsinaname

My MO made sure that I had dexamethasone just before each cycle of chemo. It was injected into me, just before the chemo began. I think it helped in countering most of the deleterious side effects of docetaxel. Cheers, monte1111 !!!

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whatsinaname

Thank you, kick-prostate-cancer. Here's wishing you and your husband all the very best.

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WifeofD

Count your blessings... My husband also has NO pain..He finished 6 sessions of Chemo, on Eligard & XGeva..Each time he see the oncologist and his Main Cancer doc they continue to ask Do you have any pain? He says NO...we have asked the doctors too about this cause he has many mets to the bones...The doctors tell us: It's a Blessing he has no Pain with the amount of mets to the bone-It's a Gift from God!!! so we are taking it...I think the same about your situation...Count your blessing with the gift of NO Pain...Do what you can now with the NO Pain..complete your bucket list, enjoy Life! ( I also think the diet & exercise programs is helping my husband...)

1 like
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whatsinaname

Hi WifeofD,

Many thanks for your reply. Yes, I do consider myself lucky that for the last one year I have had very little to no pain. Even though the mets have increased in size and qty, still no pain at all. I don't diet (I eat meat, fish, poultry, dairy products). I hardly exercise.

Yes, I certainly agree with you about enjoying when the going is good. 30 days in France and Paris are coming up, IF everything works out healthwise.

Thanks again, WifeofD, all the very best to you and D.

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tallguy2

I have no statistics for you, just me. I have mets to the lower spine and to several areas of abdominal lymph nodes. My onc says they have been there for between 1-2 years based on imaging from 2016 showing nothing and then 2017 lighting up. They are still there after same 6 rounds of chemo you had plus radiation treatment. I have never had any pain associated with my mPCA. We should feel blessed!

1 like
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whatsinaname

Thanks, tallguy2.

I agree we are lucky. Lets hope our luck holds.

Cheers !!

1 like
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j-o-h-n

I had pain up to the day my ex-wife became my ex-wife........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 02/25/2019 10:07 PM EST

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guitarguy

A very legitimate question In my not so humble opinion. People in general expect certain confound to cause pain. Cancer is probably at the top of the list. All of the info you have to process/work with would indicate to the average person that cancer can, and many times does create pain, in some cases a great deal of pain. The fact that you aren’t feeling any pain is very good regardless of why that is. It may be temporary/situational but in either case I’d ask my doc for his input and go from there. I’ve had cancer and never felt a tinge of pain. I only found out I had it by accident. Not all cancers are painful but there are lots of variables you have to involve in that statement for example, what type of cancer, where it is and what stage it’s in. Is it in or close to any nerve clusters or centers? Have or do you currently have any spine problems which could interfere either processing pain signals? Are your meds partially responsible. In short there are too may variables in your situation for any of us to give you anything more than an opinion at best. Again, I would take this to your doc and see whate he/she thinks. I’d be interested in the answer if you feel like sharing.

I have a good friend who is basically in your position but with 83 spots in her lungs and a fully involved kidney they intend to trove as soon as her lungs getto the point where she can tolerate anesthesia and surgery. She has never felt any pain. It may be idiopathic, the medical term for (I don’t have a clue either). But again, asking does nothing but hopefully enlighten you.

This is from someone who hasn’t experienced a pain free day in over 25 years and who takes ~ 80-100mgs iof Oxymorphone every day (not cancer related) just to get out of bed and get through every day and hates every mg of it.

I’m very happy to hear that you don’t feel any pain and I sincerely hope that continues to be the case until you are cancer free. Best of luck, stay positive!

Dave

1 like
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whatsinaname

Thank you very much, Dave.

I asked my MO yesterday as to why I didn't get pain despite the increase in both size and qty of mets and he just didn't know the answer. He tried to hide his ignorance by telling me that I should be happy that I don't get pain :-) Of course, I am happy I don't get pain.

I will be seeing another MO tomorrow to get another opinion. I shall certainly post her opinion, whatever it may be. Basically, I want to know 3 things : - 1) Which treatment do I now take after the apparent failure of docetaxel. 2) Will it be Xtandi or Zytiga and WHY ?? 3) Why do I not get pain despite increase in met size and qty ?

Thanks for the detailed reply, Dave. Much obliged.

Here's wishing you & your good friend all the very best.

Reply
ewhite999

Normal. I have yet to feel pain from bone mets. Only way I know I have them is from bone scan results.

1 like
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whatsinaname

Nice to know that, like me, you too get no pain from bone mets.

Same here, had it not been for the scans, I really would not know that I had mets at all.

Cheers, ewhite999. Enjoy life, painfree :-)

Reply
Rkoma

Tom and Jbooml answered your question. Osteolytic lesions are less painful, but more dangerous regarding bone breaking. Your RO can say, looking at CT results, which version you have. Sometimes PSMA/PET doesn't‘t correlate with CT, means mets are visible in PET but not in CT. That‘s most probably the case when they are still small.

Regards

Rkoma

Reply
whatsinaname
whatsinaname
in reply to Rkoma

Thank you very much, Rkoma. Much obliged.

Reply
Schillemore1

My hubby is 88 with metastatic prostate cancer in bones of pelvis , spine and thorax.

Thankfully, 2 .5 yrs into metastasis, he has no pain. He does have weakening of muscles though.

I pray that he never has pain...So far ,so good.

1 like
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Lulu700

This is a blessing my friend .. You’ve been through so much .

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