Dec '16-first case of ED, Mar '17-difficulty with urination -Apr.'17- saw doc. referred to urologist May '17-exam-scams-biopsies --showed no spread, all in prostate..PSA 52. June'17 rad.pros.robotic removal. 6week checkup PSA 61. started on lupron. Referred to Oncologist. We nit picked the two clean scans and did slide by slide review, Pelvic lesion and 2 enlarged lymph nodes. New scan in Aug'17 before start of chemo. Now first lesion much larger with tail, two new lesions-tailbone and high pelvis. PSA down to 6.5 from lupron. Started taxotere chemo. series, First dose burned out veins in right arm, couldn't even place picc line on that side...picc now in left arm with no ill effects form dose # 2..(if you ignore the fact that my full beard and long hair are about gone).
So far feeling good and able to work. But have hot flashes and frequent breaks in sleep-like every 2-3hrs. Hoping for best.
Doug
PS.. Did I forget to mention Gleason 9/10. fast growing, aggressive, invasive, into veins and nerves at all margins. Only thing tested that didn't come back 'hot' was my fat.
Dr,s say 'Lupron or other meds for life. Scheduling bilateral orchiectomy for 2mo. after last chemo. in this cycle. Done after 9 cycles. Surgeries done May 1 and May 2nd. Orchiectomy and thumb rebuild.
Dec.2019 update.
After 9 cycles and Xtandi added, went to straight only Xtandi 160 mg. 60 days later I was a complete invalid. Talked it over with my wife and we decided 3 yrs. of life would be better than 10 yrs. as an invalid. Started cutting dose. 160 to 120 and noticed improvement .,120 to 110 better yet, 110 to 100 all within 60 days.. Able to go back to work for three months and then retire. Continued cuts and settled on 80 mg. With Phys.Ther. was able to regain much of my strength and three years after purchase of retirement home in Idaho, finally made the move July 1st.
Three months later while using antique kerosene weed burner, burst hose and ignited. Now I know why people die of other than Pca. Third degree burns on entire right arm. Off to Portland burn center for grafting. A month later started therapy, they tell me two years and then cut and graft to relieve scar tissue. Didn't hardly think off aPca for a whole month. Sure wish I had made trip to Portland for fun instead, but life is full of surprises.
Written by
Shooter1
To view profiles and participate in discussions please or .
Here's hoping your Lupron combined with early chemo will be really effective and bring your PSA quite low, and also show up as some improvements in your imaging in the months ahead. There are men here who were first diagnosed with very high PSAs in the hundreds, or even the thousands, with numerous "mets" to bones/lymph nodes, who have been responding to their treatments and living with advanced prostate cancer for Years.
Welcome to the "hot flash" club, too. As Yost mentioned, a nice little fan in the bedroom can really come in handy. I can attest to that, having been on Lupron, myself, for almost 4 years now.
Charles
Doug, welcome to club that nobody wants to be in. But we are all in this together so you're one of our brothers now. We're here to help, support and figure out how to navigate through this new part of our lives.
I'm just ahead of you with the same treatments. Finished my 6 cycles of Taxotere 6 weeks ago, still recovering but almost all the way back to normal. Getting plenty of those lovely hot flashes myself.
I second the fan-by-the-bed solution. I have a small, quiet one on my night stand, aimed at an angle so that I just need to move slightly to get right into the flow. Otherwise, I keep my head just outside the air flow. Works really well.
Looks to me like you've chosen a good treatment plan, we're all hoping for your continued excellent response. Wishing you the best and keep us all posted.
Wow...reading through here...I realize as you say that you are "just ahead of" Doug...I am JUST behind you. I'm on Lupron for 3 months and next Friday(Oct 6th) I start my first of the Chemo(Taxotere) regime of 6 cycles ...one every 3 weeks. Nervous, but optimistic. My PSA never went over 28...but I have several one bone and a couple of lymph nodes involved in groin area. They did NOT show up at first...until I took the newly approved Petscan for prostate cancer...Is everyone having the "new" petscan these days...? just literally within the past year my petscan came back clean...but it was the old fashioned one. Curious if you have (or anyone reading) experience with the two types of pet scans?
No, I haven't had a PET scan. The old standards of CT and T99 bone scan work very well together in most cases, unless you are looking for very small mets and need the extra sensitivity.
Whenever considering any tests, I always ask the question: "How will the outcome of the test effect my treatment plan?" If I or a doctor can't answer that, then I don't do the test.
very interesting. If I hadn't had the new pet scan...I'd still be thinking my elevated PSA was from an infection...the bone scans and ct scans had all kept coming back normal. This is a weird journey! Thanks for your reply.
My husband had Ga68 psma before the surgery which is the newest and most sensetive scanning as far as i have told indicated there was no mets. But after the surgery the pathology showed 4 lymph node was positive out of 21
It is good that you are hitting the cancer early with Lupron and chemo. Sometimes I think they give us these side effects to take our mind off the cancer. We made our bed up on two sides, my side with light covers and my wife's side normally. I also put a fan on a coffee table at the base of the bed so that it blows only on me. Helps with the hot flash.
Thanks for the hint on bed making. I already have my away from home bed made up light in my apartment. Yes, that sounds odd, but working for the RR I have two terminals to work out of and live on both ends of my run... So far hair loss, hot flashes, bad sleep, and burned out veins have been the only side affects. Now have picc line in and no burn problems..
Doug
Wow! What a party...scary story ,I relate...do almost anything to prolong life ..It’s a battle for life and quality of life. I suggest that you eat very healthy.I did orchiectomy 9/16 . No more shots.Already you are castrated chemically and mine reduced tiny and somewhat painful at times .No more. Pain free. There was a phycology of depression and some suicidal thinking on my part before as I decided and after surg. Felt like life was over for me just put me on the back pasture like a castrated bull. That lasted a month or so. My worst problems are fatigue , mood swings..I’m lucky not to have done chemo only RT. Get fine and informed views on this cite. Find some happiness every day. Even if it’s something minute. You can live a long fruitful life. But as you know , it’s not without tremendous cost in every category. Keep laughing if you can. I’ve met some amazing people during this journey. You will too .Keep your mind open and believe that you can triumph this beast that we all face. There is Strength in knowledge and you ll find most any question answerable here.Good luck!
Stay on drugs for life, with side effects, or surgery. Not a hard question for me.. Once this first 6 sessions of Taxotere are finished and my body is able to heal normally, I'll go under the knife willingly. Wish this option had been discussed before Lupon was started...
Update...though treatment 5 and still working.....Sleep still a problem, especially since company has come out with new restricted drug list that takes my most effective drug out of the works....PSA still dropping with each test....latest down another 25% in three weeks to 0.197. Talked with DRx and they agree to continue past 6 as long as results keep dropping and I'm no dying form side effects..Have to postpone 2 surgeries that were scheduled for Feb. and May have to work longer before I can retire and move to North Idaho, but if I can get this beat down far enough to get extra years out of it, should be worth all the effort. Just hope to make move before the snow flies thick and sticks.
Here goes aiming for 10 treatments.....don't know if I'll make it but that's the new plan from my side...doc says reevaluate after 8.
Darned PSA flat lined and actually went up a little... Adding Xtandi to mix. With rise had no problem getting insurance to cover. Pharmacy says pills will come FedEx on Thursday.. Of course then comes another set of side effects. Joy to the world. Continuing chemo. # 7 in two weeks...
Going thru hell right now.. You’re going to make it. Don’t give up. Keep hope and an eye on the light at the end of treatments. Joy to the world, but also a lot of suffering. Side effects probably more of the same.. Keep up your fight Shooter1.
Xtandi and two weeks later 25% drop again at #7, now Thurs. go in for #8. More blood work for chemo. and uro/surg. on Weds. Finally going to test testosterone levels and dht. Time for Lupron renewal. Boy do I get tired easily, One tank of gas through my chain saw and I'm shot. Have to split for the next day or two.(or three).
Doug , sounds like things are going good with the xtandi. I think you have a great attitude, keep it up. I am also a Gleason 10, I ddi not see you before.
#8 sloughed skin on back. Other side effects intensified. Added dexamethasone 4mg for 5 days. #9, not quite over troubles from #8. Hit the wall with this one. Eyes out of focus, double/quadruple vision, numb clear up into wrists and ankles and across face and back. Sloughed skin top to bottom, front and rear. No energy at all. Can't drive. (can't hold wheel or see). #9 tried to kill me. Knives in my belly. Dex for 5 days and then quit for 2. Started again and took for 14 days more. Now 7 weeks later I still have some belly pain. New symptoms as I thaw out. Shooting pains in wrists, ankles, toes . Losing toe nails. Painful knees and elbows. Guess I went as far as I could and then one more. Onc. says take time to heal, then full scans (bone and ct) and blood tests first week of June. Go see him second week. Two weeks vacation end of April and back for surgery on May 1. The battle continues...
You need a vacation... after what sounds like crucifixtion .May Day! Back to the grind ... wow .. hope this pays off and that you start to recover soon from this assault and that surgery assault ... I pray that your pains go away.If we find some energy, we can bottle it and mass market it to all of us that are in need.. Good luck and God bless you Shooter1 in this hellacious cycle of treatments that you’ve completed .. hoping it did put down what was intended , now recovery. ..... I’m looking forward to better news for you. You’ve just got to pull thru ; with no energy and pain, life sucks, but I hope those will diminish with time. Fatigue is a companion of APC patients. I’m still looking for the pot of gold and the fountain of youth, if you find them let me know..You need someone to get you up and moving at least a little bit. May need a cattle prod to do so .. I’ve had that chronic fatigue syndrome. Don’t turn into Rip Van Winkle! Hope the path is clear after treatments.. Lots of prayers heading your way..
Thanks, hope to rejuvenate next couple of weeks. I need to. Crazy Dr's schedule puts me in one surgery on 1st and second on 2nd. Not ideal, but shouldn't be any worse than down and out time after #9.
Second Dr. backed out. Said to close to first surgery. Put on hold to some later date.
Doug--AZ
And so it goes, hang in there baby. ... I heard the 106 year old man say “ The first 100 yrs are the toughest. “ Rest up...
Well, I got back on schedule and had surgeries back to back. Now i'm just getting back to some usefulness. Pumped out one of my 150 gal. tubs into garden and thinned some weeds before I ran out of energy. Dr. appt, next three days. Two local, one out of town. Will keep you posted,
Back to back, whoa.. time to heal... Good Luck..., ..
Temps back in 90s soa day or so more maybe before heading north...you’ve been thru so much in these past 7 months wow.. Hang in there.. you need a vacation ...
Blood tests of May 21st best since before dx'ed with Pca. PSA holding at 0.140. Bone scan results back today. All old mets much diminished and less active and no new ones found. Insurance finally OK'ed full ab. and pelvic scans, so 21st for soft tissue and more blood work. Hoping for same results as bones. Scans have shown marked degeneration of wrists, hands and large joints of extremities not related to cancer (side effects of treatments), so my saying I have aged ten year in the last year seem to be right on. Working on my new normal.
Surgeries on May 1 and May 2 seem to be successful. Working with Phys, Ther. to Get back to work. Need July and Aug. then take most of Sept. off and pull the pin on Oct. 1st. barring any major set backs.
Xtani 160 mg dose made me a complete invalid. End of May and first half of June couldn't feed myself, lift glass of water to drink even with both hands and it ran out the side of my mouth. Numb hands. weak wrists, bad eyesight, numb feet(need to hold on to both walls to go up or down stairs), can't wipe my butt, can't feel or wiggle toes, hard to walk or get up out of chair. Talked over with wife and decided life This was wasn't worth living. Cut dose of Xtandi and started improving in 3 days. Cut again 2 weeks later and started to heal. Cut to 87 mg and improved enough that I could go back to work July 6th. Final cut to 80 mg and life returned...Neuropathy in hands and feet still present and nerve tests show permanent nerve damage and dead nerves in wrists and hands. Didn't test feet. Still weak and tire easily, but able to function. Sex never again and wife and I both miss that.
July 1, finally made move to Idaho to home we bought 2 1/2 years ago for retirement. Picked my first huckleberries, picked 13 gal of raspberries and now plums are getting ripe, apples are getting ready to eat and hazelnuts filling in. Bought new lawn mower (smaller) and have grandson run it. New normal kind of sucks, but I'm still above the grass.
Getting ready to put new clutch in '93 Toyota pick up as soon as book shelves have new coat of paint and I can get it into garage....Staying busy, but still not much energy and neuropathy makes me drop nuts, bolts, wrenches, etc. Canning started on plums(Aug 18) How will i get all this done before the snow flies?? Have 3 cords of partially split tamarack ordered so final splitting should help keep me in shape this winter.
Meeting new VA Drs on 29th and new PCP on 17th of next month. Moving 1400 mi. is not easy. Still need Onc. in north Idaho or East Washington if one exists here in the sticks.
Hulkleberries and hazelnuts .it sounds like heaven ...I have neuropathy too. We only moved 0 miles so I’m keeping my tri monthly mo visit down south . A three hr drive .. I’m looking for a GP here... I hope change is good for all of you . We are happy so far in our new place .. Take care Shooter1. Let’s enjoy this new life as much as possible .. Scott
You might look into a nice little add on bidet for your toilet. We have them on our toilets and they are only about $25 on eBay or amazon, my friend got her husband to rig hers up to the hot water line.
Thanks for the update. We were visiting in Sand Point ID last week and attended our first Huckleberry festival in MT. Great pancakes.
Xtandi took a toll on my husband, too, but it kept his psa down for 16 months. Now he is trying Zytiga but we are not very hopeful. He is thinking no more standard of care treatments.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
New here. My story. 
New here and to this disease
New Here. Overwhelmed.
MO wants to switch me to Xtandi---I Need advice
