To my friends from Malecare and those following me, there have been recent changes, and I haven't been posting anything, because I've had so much fatigue and I have some difficulty in navigating this new site.
Now I'm having extreme pain in my prostate, which couldn't be removed because of the involvement with bladder and rectum when I was originally diagnosed.
It appears that with the reduction in Xtandi last November and my orchiectomy, that my prostate has had a growth spurt, and I'm hoping that I can have radiation to shrink it again. But my radonc thinks that it would cause a stoma or hole to open up in the colon, and radiation may not be possible.
There is a strong possibility that I may require surgery to finally remove the prostate, but the bladder would also have to be removed, as well as a colostomy. My medonc has said that she thinks that I'm too weak for chemo, and yet the invasion of the bladder at diagnosis had already partially blocked both ureters and bladder outlet, so if it grows enough again, I could have complete blockage of the ureters.
I'm more than a little scared at the prospect of surgery, especially since I've become so weak and lost so much weight due to the side effects of the cancer meds. A bout with the flu in late Jan, early Feb, landed me in the hospital to be rehydrated with IV fluids and my weight to slip down to 119 pounds, and now I look like a stick man, my arms and legs are so skinny and ribs sticking out.
This coming Wed, the 23rd, I have an MRI scheduled and then a consult on the 25th (Good Friday) for the results---perhaps it's a good omen---good results on Good Friday.
My medonc increased the Xtandi dose back up to 120 mg from the minimal 80 mg, and my palliative nurse has doubled my morning dose of morphine, also, so I have diminished pain from one or both of them, and it's at least tolerable.
So much depends on the results of the MRI, and all of us know the anxiety of waiting for test results.
I couldn't even wait until Friday to post this about my current situation. I might end up in the hospital unexpectedly again at any time without access to a computer.
But I wanted my friends to know that I'm still here, and still fighting.
CERICWIN (Eric)
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CERICWIN
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And as you are aware, my online brother, my prayers are for all to turn out well and your pain reduced to at least being tolerable. You are a fighter and I admire you for that.
Hi Eric. Sorry to hear about all the increasing bodily/emotional pains you have been living with in more recent months. I'm glad your palliative nurse has been able to help you take some of the keen edges off of some of your physical pain.
I can identify with feeling the fears and anxieties of awaiting the results of the very next "test", and the uncertainties and difficulties of working with medical professionals toward whatever might be one's more reasonable "next step" forward, into the months, weeks, days, or even moments ahead.
Sounds like your options for urinary system impacts may be limited whether you have a prostate area palliative/salvage surgery or directed radiation to the area. Perhaps likely to end up having your ureters connected to an abdominal stoma and a urostomy bag, either way? A surgery might get that part over with in just one procedure, without any secondary radiation damage. Might also be worth it, in terms of renal failure systemic alternatives and related pain management. Thousands of people do live pretty well with just urostomy bags.
If you may still be considering directed radiation alternatives, you might consider seeking a second opinion at someplace comparable to the Northwestern Medicine Chicago Proton Center. Sometimes proton beams can be more precisely controlled than standard X-ray radiation, and can deliver a lower dose of radiation to nearby healthy tissues.
Northwestern Medicine Chicago Proton Center
4455 Weaver Pkwy.
Warrenville, IL 60555
Phone: (877) 887-5807
(I think the Chicago Proton Center also has operators who have been trained to use the recently cleared SpaceOAR Hydrogel system, which provides an injectable temporary "spacer" that holds the rectum further away from the prostate during several weeks of time of external radiation treatment(s), and then harmlessly melts away afterwards. SpaceOAR has an informative website, too.)
But so much for the seemingly never-ending "medical" details. (So often the much more important stuff is in our unique hearts and minds, and in our successive present moments of life.)
Eric, you mentioned Good Friday (and Easter) coming up soon? Hope you might soon be able to find some ways to get outside and do some of the Springtime things you did in your youth, before you knew of such things as MRIs and PSAs. (At age 67, I also now find some sublime pleasures in some of the simplest things of daily life.)
Keep fighting Eric . My mother always said that there can not be rainbows without a storm. Look forward to hearing positive results. I have been surprised myself since being diagnosed at state 4, with lymph node, and bone mets in August of 2014 that even when many of my complications come with the prostate tumor growing against the bladder providing urination issues that no doctors offer up any other treatment options other than hormone and the chemo I am currently undergoing. I have tolerated the chemo very well and judging by my urine stream improvement, less frequency, and falling PSA it must be shrinking the tumor. Would like to find a doctor that would radiate, chyro, or seed the prostate to knock the hell out of some of my issues.
Oh Eric the stress and worry you must be going through. I'm so sorry you are having to go through this let alone going through this almost alone I'm thankful they are helping you with your pain. I'll be wishing, hoping and praying for positive results. I'm so thankful that even through all of this trauma to your body and your spirit that you are not giving up! Even through all of this........you still have a fighting spirit! Keep us posted as you are able as we do worry, care and think about you and your well being. Love and peace my friend. Most sincere, Jackie
Thank you, Chuck and Jackie and everyone. The thought of spoiling my perfect body with surgery is daunting.........lol But seriously, I thought that the other mets would grow and proliferate, rather than the accursed prostate giving me more problems. If the prostate is beginning to block the ureters again, they might want to hospitalize me immediately, so I might not be able to post my MRI results on Friday, for anyone who's following my case.
Eric,you are a true inspiration for all the people in same situation....you will get over this as you did all the past years.....I am sure you will....
Thank you lyrikos. I hope that I can indeed inspire others. It gives me a sense of usefulness and purpose. It does get more difficult as things progress, but I'm still fighting.
Eric, I have always admired your fighting spirit, I do believe there is new drugs coming and you will get through this, my thoughts are with you brother.
Dan
Best of luck to you Eric - you've gone through a H of a lot, proud of your fighting spitit.
Thank you, Jorge. I have tried to remain as positive as possible, and it's nice to know that I am reaching others, to show that in the later stages of prostate cancer, there is still hope and reason to continue fighting.
I realize that there is a lot ahead of me, and it will become even more difficult as the disease progresses. I hope that I can maintain the fortitude to deal with it. Of course I falter at times, I'm not made of stone, but I'll keep going as long as I can.
My case is different and not typical---I am in the late stages, and began with the cancer being very advanced, and want to make it clear that it will take others a long time to get to the point that I'm at, and not to worry that they will progress the same as I have.
It is my intention to inspire others, not to discourage them, and I'm glad that individuals like yourself understand that I post these things, not to elicit sympathy, but to show everyone that there is still life to be lived, in spite of the adversity and limitations that this disease imposes, and that side effects from the powerful drugs are unavoidable, but worth it if it helps to slow the cancer's progression.
Eric: You are strong spirited and that gives you strength to push forward. Thank you for posting your most recent update and please make sure you follow up with MRI results when you receive them. Positive energy is coming your way. All good luck to you. Jon
My husband is fighting the same battle , 50 years old and started at a psa of 88 10 months ago and despite firmagon , chemo and xtandi , spot radiation the bloody psas is sitting over 500 now and we are chasing experimental drugs . Eric , I have been reading your updates and you have given us much hope and inspiration . Thank you very , very much , thinking of you from Australia .
I'm so sorry about your husband and of course yourself, too. This disease affects you as well. It's hard on caregivers, who are devoted and deserve recognition for what they go through.
And this is the most difficult disease that can inflict a man. It's very difficult to function, especially with the way that it screws up our hormones. When I have the mood swings, and fall into depression and despair, I have to keep reminding myself that it's only temporary, life goes on, and I'll feel better soon. And sometimes I have to power through the fatigue, and keep moving and exercise, regardless of how I feel. I imagine that it's similar with your husband.
There are a lot of new things now, and the immunotherapy is very promising, so don't give up hope and keep fighting.
Keep fighting brother. Had colectomy in 2004 which precluded surgery in 2008 when PCa found. HDR brachethrapy with rods not seeds failed. Lupron since with some success and Casodex to be added tomorrow after something appeared last week after bone scan and X-rays due to kidney stones. Urosepsis last year was fun too. I am still going to win! Love to my fellow members of the Agent Otange Health Club.
Hi Eric. My cell phone is on the blink Checking to see if you are feeing any better or if you have gone to the hospital. Hoping and praying you are doing better or was able to get some help for your pain. My best wishes and prayers for all to go well for your mri on Friday. All fingers and toes crossed I hope things are not getting any worse with the increase of the xtandi. Please keep us posted because we care so much about you and your well being. Gentle hugs Eric.
I had the MRI today, and it was the worst ever. My back was hurting, and yet I couldn't even move to a more comfortable position. I've had MRI's before, but this one takes the cake. I was thoroughly exhausted, but after getting home and a few hours' rest, and I felt much better.
Now the wait until Friday's consult, when I'll get the results. I'm just having another setback, which is to be expected, I just hope that it isn't too bad. One day at a time.
Oh my goodness Eric....I'm so sorry you had so much pain during and after the MRI. I'm just hoping and praying that all positive will come out of the results. I hope you are resting somewhat comfortably until your appointment tomorrow. Hugs and prayers Eric.
So glad you rested all day Eric. You would certainly need it after that and then having to go out again today. Good Friday Blessings to you Eric. How were your results and how are you after being out for another long day?
Eric, You have many friends on this site who have followed your posts over the years. Personally I look forward to hearing your updates as well as your suggestions for dealing with various health issues and side effects. I wish you well during this next phase of battling this disease. As my husband always reminds me, "when the going gets rough, the tough gets going!" That's you!
Thank you so much. I'm getting ready to go to the cancercenter for the consult today, and since it's Good Friday, perhaps it will be good news, also. In any event, it's another setback, which is to be expected, and I can only hope that it's just a minor setback. But I'll manage, whatever happens, and hope for the best.
And I thank everyone for their prayers and good wishes.
Eric: You are a warrior and provide such encouragement for ALL of the prostate cancer men. I do hope your MRI results are good, please let us know so that we can support you. As I mentioned before, you have a strong spirit, kind words for everyone, and tackle your horrible disease head on. Positive energy your way, and thinking of you always Eric. Jon
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I'm thankful they are helping you with your pain. I'll be wishing, hoping and praying for positive results. I'm so thankful that even through all of this trauma to your body and your spirit that you are not giving up! Even through all of this........you still have a fighting spirit! Keep us posted as you are able as we do worry, care and think about you and your well being. Love and peace my friend. Most sincere, Jackie
I hope things are not getting any worse with the increase of the xtandi. Please keep us posted because we care so much about you and your well being. Gentle hugs Eric. 
Cyberknife is in my future
New here..looking for others experience with XTANDI
Finally, my MO's treatment plan:, no Triplet Therapy. Let's do Eligard, XTANDI, Radiation, XGEVA
Nothing left to do?
Lost Another Round
