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My story is kind of long. I was diagnosed with prostate cancer in 2001 at age 72. I had prostate surgery with side effects ED, urinary incontinence which went away after about 6 months and returned after about 1 years (maybe due to old age) PSA was 0.0 until about 3 years later it rose to 0.25 and I got radiation of the prostate bed. PSA slowly went to 0 stayed there until 2008 when it slowly rose to 1.67 at which time I started 2 year course of LEUPROLIDE. PSA went to 0 and stayed there for 5 years until beginning of 2016 when it started rapidly climbing to 1.67 in February 2017. My oncologist said wouldn't start treatment unless PSA reached 4 or I have symptoms. But when I visited my urologist for other reasons, she was concerned and ordered a bone scan. Bone scan showed spots suspicious for meth bone cancer. then my oncologist ordered labs and had me come in. My PSA was 7.0. On May 10th 2017 she started me on BICALUTAMIDE 14 days followed by 3 month inj of LEUPROLIDE. A PET scan verified bone cancer in the ribs, the sternum, the spine and the pelvis. I don't have any pain, well I have had chronic back pain for years. The nurse that gave me the LUPRON injection said "men over 85 don't get hot flashes" WRONG! I am 89 years old and now that hot weather is here I need a fan often. I just recently ordered O2Cool fan from Amazon, it should arrive soon. I don't know where my old fan is. My wife died 5 years ago so the loss of libido is of little concern to me. I don't think the other reported side effects bothered me. After reading the other posts seeing the recommendations for exercise, I went for a walk about 6 blocks. I am looking to see what's new.

24 Replies

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  • Since you have not been on permanent hormone therapy I expect he'll get some benefit from the Lupron with a PSA going down and a delay in any pain. I hope my guess is right. Thanks for sharing your story, and let us know how it goes.

  • Thanks for encouragement and I will keep in touch

  • Welcome old89. You've fought a good battle and if your nurse said men over 85 don't get hot flashes, and you did, well.....perhaps your biological age is younger!!

    Haven't advanced to Lupron class of drugs and pray that I won't. So can't be of much help to you in the area of hot flashes. You will surely hear from others that can help.

    All the best,

    hankM

  • I like the idea maybe my biological age is younger, thanks for that idea.

  • Hi young 89. A quick note about hot flashes, neuropathy. I have had diabetes for 30 years which can give peripheral neuropathy, hot flashes in feet and hands if diabetes poorly controlled. Got severe poly neuropathy following 8 months chemo. Whole body. Oddly not brought about via diabetes. Followed a link on this to Maryland Uni. They clinically trialled supplement Alpha Lipoic Acid because German health prescribed it for peripheral neuropathy. 600mg x 2 per day, what an improvement for me. Severity and quantity greatly reduced. In UK available in health food shops. I cleared the A-L Acid with my GP and my Onco first. GP is also a diabetic specialist. Good luck, keep walking the walk.

  • ALA, has been used in Russia, for 50 years, they found control of diabetes, could be obtained, with this supplement. The reason they found this and used it was they were not able to produce or buy enough Insulin, back in the USSR days

  • Thanks for the update NAL. It goes some way to explaining why it's the Germans who use it for diabetic neuropathy and it's also rated as a diabetic drug though not marketed as such. My sugar levels are also returning to normality along with reduction of post chemo neuropathy. Had NY Onco and the GP not found the clin trial from Maryland they would have advised against its use. God bless Maryland.

  • I have known of its use for 25 years. Also the R-Alpha Lipoic Acid version is twice as strong. As ALA, exists in what we call in chemistry the R form and the S form. Only the R form is bio-active. So whatever dosage you take is actually half of what is declared on the label.

    I use Doctors Best, or the Vitacost Label, which is labeled R-Lipoic acid, or R-Alpha Lipoic Acid. There is also evidence, that this molecule has an ability to turn the AR-V7 gene splice off from positive to negative. Only read one paper on this activity. Not enough science yet to doing this, but there are some mild indications, about this as being possible.

    Nalakrats

  • Thanks again.

  • I have neuropathy in the legs and feet due to cold weather injuries from the cold weather of Korea in winter 1950-1951. I only get gabapentan (Neurontin) , not sure if it helps. I better talk to my nerologist about prescribing Alpha Lipoic Acid if possible and see if that helps. Thanks

  • I have neuopathy in legs and feet from cold weather injuries which occurred in the cold winter in Korea 1950-1951. I only get Gabapentin (Neurontin) don't know if it helps. I will check with my Neurologist and Onco and see if Alpha Lipoic Acid can be tried. Thanks for the info.

  • Nice to hear from a fellow elder--especially one who's been living with PCa for as long as you have. I'm now 72, diagnosed 2 1/2 years ago. Also have none mets. Currently treating those with Xofigo--an injectable radium solution. So far happily pain free. I probably won't know until my next PET scan whether the radium has helped, but hope to hear more from you.

  • Good luck, Reptale, I hope you make it to old age, as old as you want. As they say you will die with Pca but not from it. Hope to hear more from you.

  • Of course at 89, after a successful battle experience of 16 years, you are only a new INSPIRATION for us. Thank you for joining us with a clear profile. Still there will be sufficient treatments available to protect your life until you hate to see sexy chicks around!

    My best wishes for your long life!

    Sisira

  • I don't know if i'l ever hate to see sexy cicks around. Thanks for the encouragement.

  • Dear old:

    You're a lucky guy to have survived so long. In terms of hot flashes, I use estradiol patches twice weekly which really control them. No night sweats either. Ask your urologist about them. You apply the patch below navel twice weekly.

    Bob

  • I will ask my urologist about estradiol patches. Are these prescri[tion only? Thanks for the info.

  • One of the hardest things to do is to exercise. Keep putting one foot in front of the other.

    Joe

  • Right you are, one foot in front of the other, 1 2 3, 1 2 3.

  • You are a Joy and Inspiration--I am on year 2, and would love to get 16 years---which would get me to your age. Wow---keep it up.

    Nalakrats

  • Get to my age and more. You keep it up.

    OLD89

  • Welcome, old89. How often will they be testing your PSA now that you have started Lupron? Hope it goes down nicely once the Lupron has a little time to work. Since you have bone "mets", you might ask your doctor about getting a bone strengthening agent, such as Xgeva, or possibly Zometa, or maybe something along those lines. See what the doctor says. As you already know, with older folks any falls and broken bones can quickly become quite serious complications.

    I sleep with a little fan on me at night, too. I've been on Lupron a little over 3 1/2 years, after having been diagnosed with multiple bone "mets" and going on Lupron right away at age 65.

    Keep us posted on your progress. (If your doctors might someday start recommending some other treatment you may not be sure about, you can chat about that here, too, as you take some time to think about it.)

    When's your birthday, old89? Will they let you have a birthday cake with candles on it, or will you have to get it cleared first by the Fire Department? Ha. Ha. Ha. Ha. (I'm sure you and all the crew you run with have heard that old joke a thousand times by now. I just used it on my own Mother who will turn 90 next month.)

    Stay out of trouble,

    Charles

  • Thanks, Charles, lots of information here. My birthday is May 26. I expect to notify the fire department, keep up the humor. Not hard to stay out of trouble.

    OLD89

  • welcome old89

    Remember what they say, you're as old as the woman you feel...

    j-o-h-n Thursday 06/29/2017 9:26 PM EST

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