What's up doc? is radiation right for me

[charmander]

I have been reading and responding to you wonderful men (and some women) on this forum. I am so grateful for this place to come and share and learn. Here are my stats: 12/2013 DaVinci, planned to radiate the bed but psa went higher after removal. No lymph node involvement but yes to seminal vesicles. As you can imagine I have an appendage that no longer functions as originally intended. Cancer bastards had decided my bones were a fine place to set up. A sodium fluoride PET scan showed 3 very small spots. Year 2 showed 5 spots on sacrum, 1 vertebrae, left & right hip bones. Bone scan showed individual spots of activity. Year 3 bone scan revealed 1 new met and significant enlargement of one other.

I am scheduled to talk with a radiologist next week about adding radiation to my regimen. I have 6 bone mets and am currently pain free. PSA keeps going up 1-2 points each month. Currently at 27. My bone scan showed a marked difference from the one 8 months ago. The previous scan showed individual points of light in my pelvis area. Current scan showed the entire pelvic bone area as one mass of light. Onc Doc talked about 2 avenues of radiation delivery: orally for a systemic treatment or external beam type.

As my colon, bladder and other organs are all packed in my pelvic region I am concerned about unintended consequences of damage to surrounding tissue. I don't want to wear diapers yet the oral method can affect white blood cell counts. Not sure which way to go? As with all of my past treatment decisions I feel like I am being asked to step off a cliff and trust. Oh great men and women of the prostate world I am looking for your guidance and opinions. Thank you in advance for your time and experience. Charlie

[Hidden]

Hi Charlie

I am a bit confused by your post. It sounds like you have advanced cancer with bone involvement. At this point I believe radiation to the bones would not be curative and may a lot of side effects. If you are experiencing pain from the mets palliative spot radiation might be helpful.

What treatment are you currently on such as ADT, Xtandi or Zytiga? Have you done any chemotherapy?

You may want to consider speaking to your doctors about trying radium 223 (Xofigo). This is a radio pharmaceutical drug.

Where are you being treated?

Bill Manning

[charmander in reply to Hidden]

Bill,

Yes its advance pca. I am currently on Lupron (3 month dose) and Zytiga with a shot of Xgeva for bone strength once a month. No chemo yet. I do not have any pain or symptoms what so ever. Am feeling less strong and a bit fatigued from Lupron & Zytiga. I understand that radiation to the bones is used primarily for pain relief and some slowing of progression overall.

I am being treated at Strong Memorial Hospital in Rochester, NY. I'll look into Xofigo. Thanks

[Hidden in reply to charmander]

Ok I understand. My history is in my profile. I have done most all of the known treatments at this point. So far I had salvage radiation and palliative radiation to four different spots. Just be careful who does any radiation planning and make sure you are confident in there experience and expertise.

My best wishes to you and hope all works out for you.

Bill Manning

[charmander in reply to Hidden]

Bill I just read your profile. You are my hero!! Your courage and perseverance are for me to follow. I'm scared of my future and find myself focusing on the bad. I'm finding it harder to control my negativity. WTF seems to be my pervading sentiment. On the other hand I realize that my diagnosis has provided me with the strength to do what I want and be who I want. I don't seem to care what people think of me anymore. A friend said that my diagnosis is like getting a memo. I have time to grieve the life I may not get to have and the opportunity to continuing living the life I actually have.

Scans are nothing more than a visual statistic and tests are only numbers. You are still here, and you are still you. You can still live in the moment and hope for the future. Nothing is set in stone.

Charlie Johnson

[Hidden in reply to charmander]

Hi Charlie

Thank you for the kind words although I think hero is a bit strong but I appreciate the kindness. However I am just a guy like you who got put in a difficult situation. I share your problems and throughout my treatments my goal has been to try and stay in the game long enough for research to catch up with my disease. That thought seemed to help me keep a positive view going forward. I hope this might help you as well.

Thanks again

Bill

[Hidden in reply to charmander]

Xofigo (radium223) has had very good effect in some bone met cases. I wonder why you have not had chemo yet (docetaxel or jevtana). why?

Xgeva tested better than bisphosphonates, but it's aimed at osteoporosis rather than cancer mets per se.

Strong! I am in Buffalo at Roswell. How do you like Strong?

[charmander in reply to Hidden]

I went to Roswell for one of my "second opinions" Doc was nice and we went thru all of the courses of action. He added up the months each would provide for me. Then he added it all up and pronounced I had 5 years.

Regarding Chemo, I had been resistant to it but docs never suggested either. I was alarmed at having that potent a poison in my body potentially causing as much harm as good. I'm now further down the road and it doesn't look so bad.

Doc offered Xtandi or Zytiga once I was castrate resistant. I picked Z over X based on potential side effects. I've since read that chemo early on has had some success. I still have no soft tissue mets nor far ranging locations of bone mets. All seem to be centered close to their birth place.

I was 55 when diagnosed with an initial psa of 35 and a gleason of 8 (4+4). Doc said I had an aggressive inductal pca. I'm asking my doc about doce & jevtana. thanks

Charlie

[Hidden in reply to charmander]

Did your doctor suggest imaging to locate your mets? Usually its T99 and CT scan, but mpMRI is being used for diagnosis (prior to biopsy), and I wonder if he suggested that to you. I want one for me to locate the last bits of meta prostate cancer, and I sense that Roswell is not anxious to do that. So thinking of jumping ship.

[charmander in reply to Hidden]

Yes I have had ct scans and bone scans yearly. All of my mets are described in detail with met's measurements and measured growth from previous scan as well. I have clearly seen them. My doc is Dr. Deepak (Deepak M. Sahasrabudhe) who is in his 60's with a great PA Lynn Sievert. I see the PA regularly and the doc 1x year. His age and demeanor provide me confidence. I would encourage you to get a second set of eyes on yourself. If you do in fact come to Strong let me know I'll met you and take you out for a green tea

[chascri]

Multiple mets in multiple locations. As they grow they are going to damage the bone even even though they are not causing pain now and at some point you will start to feel aching which will gradually worsen to severe cancer pain with risks of spinal compression and bone fractures. Sounds to me like you are a candidate for Xofigo (radium 223). It kills or shrinks the mets and if they are causing pain gives pain relief. One intravenous shot per month over 6 months. Minimal side effects. Radiation in each shot has a half life of 111/2 days and seeks out mets throughout your skeleton. It is not curative, you may develop more mets. I just finished Xofigo this past October. Details of cancer treatments since diagnosis in 1999 at age 55 are in my profile. Good luck!

It's not the years in your life. It's the life in your years. Live it!

[charmander in reply to chascri]

Thank you for your thoughts and words of encouragement

[Tomyd]

Similar situation and age starting out but my gleason was 9. have fought hard for 16 yrs tried everything that came along. as far as radiaton dont worry too much about collateral damage as advancements in that re have been amazing. spent 2 mos at dattoli in sarasota getting imrt to 15 spots around pelvic and spine w/o any prob to soft tissue at all. highly recommend them if u dont have a trusted rad guy. that afforded an xtra 4-5 yrs then zofigo last 6 mos of 2015 has psa undetectable this whole year. it will age u but not kill u. my advice there is go to it sooner than later. good stuff. im 66 now very active decent life. After getting a 6 mos to live sentence from md anderson and 2 orhers in 2000 i too started my journey only hoping to make it long enough for advancements and seems they have come along when needed. just pray our new 9 yr old president wont blow us out of the water cutting programs.

Do not give up or in. stay strong look forward. we will make it. LIVE.

[Hidden in reply to Tomyd]

Ah! So you had treatment to your mets. I wonder why I have the feeling that some institutions don't want to do that. Maybe it varies?

[charmander in reply to Tomyd]

Its good to hear you've been enjoying life for 16 years!! I'm 3 years out and worrying about pre paying for my funeral. My glass needs to be half full, thanks for your inspiration.

[Tomyd]

Yes. if in need see Dattoil Cancer Foundation dattolifoundation.org.

A truly world class operation. we went in Jan and found cheap off season rentals great climate and were completely in awe of the facilities and staff. looks like 3 docs are there now and if given the choice definitely go w Dattoli himself. you Will be impressed. They are cutting edge and not cost prohibitive relative to anything else out there. as stated I needed and got a few 3-4 yrs.. knocked it back until these new class drugs came along. prior to this i literally tried everything available. cant believe the pc landscape then (2000) to now. thank u God and especially thanks to the late Hotline Harry Pinchot from PCRI one of 2 men who literally saved my life.

Keep up the good fight and look ahead to pull thru this trying, temporary time. Best luck, big love.

[Hidden]

Hi Charlie,

I'm in the same boat, ADT every six months, Zytiga, with no pain bone mets. However, when I saw my radiologist about starting Xofigo, my blood iron was too low. When my Oncologist got wind of it, he put an end to the discussion. Instead, he put me on Xgeva, for bone health. No extra radiation or chemo yet for me. I was given a 10-15 year mortality, and at 7 years in, I know I'll beat that estimate. As long as I don't step in front of a bus, that is.

Joe

[charmander in reply to Hidden]

I'm on Xgeva as well. I take calcium supplement, turmeric, vit C and others. I've also stopped eating dairy, poultry meat &red meat. Last month I said I miss my old food so I just ate whatever I wanted. My psa jumped 3.5pts in 30 days versus my normal 1.5. So in a very short study I've concluded that diet does have an affect.

I keep my eye out for the bus too!!

[Hidden in reply to charmander]

When I got high cholesterol, I was asked to take a med, and told to change my eating habits. I changed my eating habits for a while, but no med. I quit the diet because I like a big glass of milk with my scrapple and eggs. I like butter. I like the butter cake I make. I like steaks, and bbq boneless chicken thighs.

So, what's a guy to do? Eat it anyway. My cholesterol is now normal? Who knows why, I don't. What I do know is this, the body works in some strange ways. I take less meds now than a few years ago. And, I feel better for it.