Had to stop Lupron, side effects almost drove me to take my own life. For me, I did not think twice about it. I scheduled the surgery for the first available time, no sense in prolonging the inevitable. After about 15 minutes she came in and took some measurements and then gave me three tattoo dots, one on each hip and one on my stomach, I felt only a pinch. I have used three Oncologist here, and none seem to be any help. Two days before my scan, insurance calls and denies my scan. Photo: Andreas Neumann. January How many of you have good or bad comments on Lupron? I had started what I think is like a paleo diet. Bill's first attempts at ED treatments were very disappointing, so much so that we almost gave up. Advertising on our site helps support our mission. While I completely understand the sense of loss that a couple goes through when the sexual rug is pulled out from under them, I also know the horrific end result of prostate cancer that is not cured. It seems that doctors are laser focused on treating cancer using their specialty, Dr. Sershon doing the da Vinci Robotic Prostatectomy surgery while Dr. Palmer using radiation. Heidi and I returned to the hotel, but before we did, Heidi tried to take a look for herself. He had the surgery, sex life with unhappy first marriage was already over. 12 for 12 positive biopsy with a Gleason of 5+5. lupron made him say the unthinkable "C" word to mesomething he has NEVER done in our 38 years together. I can now make love to my spouse whenever we want, and it is it great! I still will leak a drop once in a while especially when tired, lifting something heavy or a good sneeze. Bill had some urine leakage at arousal and during orgasm, but we were told by a urologist that small squirts of urine during oral sex would not cause any harm to me. 10/18: Dr. Sershon Consultation He could keep the implant activated for as long as he wanted. These medications affect the blood's ability to clot, which . NOTE: This medicine is only for you. Usually avoid combinations; use it only under special circumstances. Coming to a Cleveland Clinic location?Hillcrest Cancer Center check-in changesCole Eye entrance closingVisitation and COVID-19 information. Kristin and Ken left the room and closed a large lead door. Had my blood drawn for a PSA test at 8:15AM, received a voicemail on my phone at 3:30pm from Dr. Sershon, he said PSA is up a bit and With this level it is time to consider radiation oncology evaluation. He did not have hot flashes or night sweats. He draped a towel over Bill's penis and then said he passed the towel test. Suppl (5):S776-S794. 9/20: Results and Decision Thought best chance for a continued sex life would be radiation, I believe there may be other maybe better treatments out there, but that was what was a available in my town 6 years ago. October 2016 Safe to check again in 3 months. Finished salvage radiation in June 2021, and I am still on Lupron for three more months. 40 crunches during the commercials on TV. Anywho.here we are trying to navigate our way through itthe "grumpy gland" has caused havoc. The current match involves a Texas lawsuit . Then they shave your belly, the anesthesiologist pays you a visit, and then Dr. Sershon came by to say hi. Once he went off high dose Casodex his breasts almost returned to normal. I still can't believe all this started thirteen years ago last week. Life's a journey not a destination I am beyond grateful it was caught at a stage that can be treated/cured. When he wanted to create an erection, he would squeeze the bulb pushing the liquid from the reservoir into the tubes in his penis creating a rigid erection. Then 36 visits of salvage radiation and Lupron injections. OK, now that that is out of the way I kinda have a problem. It was a one piece device and the pumping mechanism was so easy compared to the one that we had borrowed from Myron. I've learned so much in these years, many lessons I wish I had not been forced to learn. Before the implant, Bill said he used to walk into a room full of men and he would think that he was less then all the other men. Dr. Palmer spoke quietly and you had to drag information out of him sometimes, but once you got him going, he did explain things well. Here are some of the things she learned. Oddly, I was able to continue erections during my 6 months of ADT, although the lack of interest (low libido) was a barrier. Good luck all diagnosed Feb 2019, PSA 9.1 (seminals invaded and 1 rib met). Health. Heidi and I joked a lot about his penis while he was in surgery. My question is: Does my plan look right? The second road you can go down is the one that you take control over this beast and regain your life back. I have been diagnosed with Grade 3 prostate cancer with a 4 + 3 Gleason score of 7. Because of the combination of Bill's less than perfect eyesight, and his overwhelming anxiety to put a needle into his penis, I was elected to administer the first injection. Members can connect with other members in this community. 10/7: Went to Dr Sershon office and had the Foley catheter removed. July Don't have hot flashes or weight gain but it has created severe ED. And as you know, there will be forms to fill out beforehand. Then one night during foreplay, Bill fell asleep in the midst of manually stimulating me. Anti-platelet agents affect platelet function, so people taking these drugs should not donate platelets for the indicated time; however, you may still be able to donate whole blood. We are so grateful knowing others have had rougher roads with this pernicious disease I stopped dressing them a while ago. Because I was taking so long to identify a treatment, I decided to follow advice of a Doc at major Northeast teaching hospital to get a 3 month course of Lupron. We had no idea what we were doing and we should have spent more time experimenting with the device before we attempted intercourse, but by then it had been so long since we had been able to have penetration, we both wanted it so badly. I had forgotten how active that I had been during those years in several of the online prostate cancer support and education email lists, contributing almost on a daily basis. In the early months of Bill's diagnosis, sexual dysfunction was our primary concern because we did not allow ourselves to think about the end of our journey. This after having 2 PSA scores last year between 4 and 7. We were instructed to increase the dosage by two micrograms each time that he used the injection at home, in hopes of finding the right amount to create a usable erection without causing priapism, which is a prolonged erection that some men experience when using Caverject. This number is not as low as I had hoped! I had my own ideas on this topic. We could tell because the hot flashes and night sweats stopped and his libido returned. They put me in touch with a reconstructive urologist in my area. At this point I was wearing a pad during the day and depends at night. It's important to note that people's response to ADT seems to be all over the map. Complete loss of erections after radiation treatment can happen in 40-50% of treated patients. Next step, meet with Dr. Palmer. Fast forwardthe last lupron shot was May 5th and the last dose of radiation that fried the grumpy gland was delivered on June 2, 2014. You may feel worse before you start to feel better I wanted him to take time off work during the treatment periodI knew he would be exhaused from the radiation and lupron but he had different plans. & Palliative Care, 10:55-65. Emergen-C was called out as a supplement drink that would adversely effect radiation treatments. So far, so good. Viagra Cilias and Livitra have not worked ! This medicine may be used for other purposes; ask your health care provider or pharmacist if you have questions. He did stress I have to drink plenty of water, eat well and get exercise. My doc called in a script for tri mix, I researched the tri mix injection procedure and just completed the successful first shot by myself 10 minutes later I'm ready for action. DISCLAIMER: All material available on eHealthMe.com is for informational purposes only, and is not a substitute for medical advice, diagnosis, or treatment provided by a qualified healthcare provider. I call my Oncologist to get advice and help, he NEVER returns my call. For the first 9 months of lupron 100 mg viagra did the trick but after 38 sessions of radiation they may as well been M&M's Cialis was no better The main question is will I be able to perform after the Lupron? This bothered Bill a great deal because he did not like how he felt while on hormone therapy. Viagra has active ingredients of sildenafil citrate. There are medications, like sildenafil (also known as Viagra), that can help the ability to get back erections in almost 70% of such patients. But Bill was left with a stuffy nose and a slight change in vision. So by the time he had recovered enough from surgery to begin his sexual recovery, the hormone therapy had begun to leave his system. Then, I began my quest to find cheaper erection getters! The instructor gave out her office number in case we had any questions, and would meet again if we wanted. o Can often be reversed with lifestyle choices In his mind, he believed that it was just a matter of time before he would find the right treatment for his ED and perfected its use. I understood mechanics, but I couldn't quite figure out how and when one would use the VED in the midst of arousal and foreplay. 34 more to go! I couldn't see much because there were bandages wrapped around his penis, and his penis was inside a jock strap where it would stay for the next six weeks to keep things stable as the tissue was healing. I had a recurrence of cancer. Highly clinically significant. I get fatigued quickly and have little to no motivation to do anything, see everything as pointless. I began speaking up against these type of jokes whenever I heard them. Side effects were not fun. 12/16: PSA 0.24 Tim had a biopsy on December 17 and on the 26th we walked hand in hand into the office of the uro's office who proceeded to tell us that Tim has cancerthe big Casino. He used to say that he had breasts any teenage girl would envy. We felt very comfortable with Dr. O'Leary's bedside manner and with his expertise in this area. This week he will start IV Vit C and other protocols. Our phase IV clinical studies alone cannot establish cause-effect relationship. He could not feel arousal because of the discomfort. Viagra has active ingredients of sildenafil citrate. Bill appeared to be totally out of it, but every time Heidi tried to lift the covers on her side of the bed, he would quickly push her arm away and say, "What are you doing?" pT3bN0M0 My quality of life is terrible. He once told me, "You just don't know what it is like to walk into a room of men knowing that you are not like the other men, that you are not a real man." PSA: 58.95 This medication works by blocking the action of male hormones in the prostate, slowing the growth of cancer cells.This medication should not be . I tried to understand that he never got physically horny, but there were times when I wanted to be pursued rather than be the one pursuing. Once foreplay would begin and there was tactile stimulation, Bill became aroused. Laughter through the tearsA wife's journey with the "grumpy gland". Now with viagra, great. We were so afraid that Bill would have a similar experience with pain, but luckily his pain was minimal. He began to experience bothersome hot flashes and night sweats as his body went into male menopause. Or is this just away for big pharma to make money? It wont be until 6 to 9 months after the fact that PSA numbers will be meaningful again. I looked at the doctor in disbelief"are you telling me I will have to give him a needle? After his surgery, when his PSA dropped to undetectable and we all thought that perhaps he had been cured, he decided to go off hormone therapy. Definitely get Richard Wassersug's book on ADT. Suddenly, I started to get back my energy and strength. This uro is chief of surgery and I was really suprised when he didn't push for that, but then I wondered if the radiation guy was his brother! I have received two Lupron injections 3 months apart and will complete 28 radiation treatments in the next couple of days. The instructor gave a simplistic overview of the three Cancer process stages: You can discuss the study with your doctor, to ensure that all drug risks and benefits are fully discussed and understood. With suppressed libido, the brain is less likely to trigger erections, nocturnal or otherwise. He also said he would be having a bone scan, an mri and a cat scan as part of the process. After each fifteen minute practice session he would apply different sized bands each time to see what size could hold the erection. His death left three sons 18, 19 and 22 fatherless. Not sure what to make of the result. Dosage of drugs is not considered in the study. Bill eventually came to and realized what had happened. We hadn't really told Myron how things had turned out for us. He explained the surgery and showed us an actual device so that he could explain the mechanics of an implant. I knew that we couldn't come up with that money, so I asked my mother if they would lend us the money for a few weeks until we got reimbursed. The study uses data from the FDA. 07/13: PSA 0.29 Advice needed: Suggested source is a compounding pharmacy, but that is cash-pay. Don't drink excessive amounts of alcohol when taking Viagra (Sildenafil). We had read and been told that sexual positions that allowed the man to remain upright were the best positions to attempt for a man using the VED. It was only by coming here I found out about that. The next day I went to the internet to find everything I could about Prostate-Specific Antigen (PSA) levels, Prostate Cancer and the credentials of Dr. Sershon. Results of our real-world drug study have been referenced on 600+ medical publications, including The Lancet, Mayo Clinic Proceedings, and Nature. All in all, I lot of waiting around, the actual tests did not take that long. Began Viagra, Cialis, vacuum pump, and injections with trimix nothing worked. Over the last few summers he has built us a lovely 3 story beach house, himself, no hired help. Pura Vida ! He did say on the spectrum of risk I was at the low end of high risk. I can barley get an erection, even with Viagra and have had intercourse with my wife since before I had chemo. The downside was that even if it was a success, the blood flow that Bill presently had (85%) in his penis during arousal and orgasm might not be there after the surgery. It was not really painful, just a little sensitive. With medical big data and proven AI algorithms, eHealthMe provides a platform for everyone to run phase IV clinical trials. * Approximation only. This is defiantly not the focus of physicians, it is not even on their radar. Is it possible to take a pill such a viagra or cialis to help with this? We stopped at our favorite restauranta cozy place on the watera had a few "stiff" shots. Our phase IV clinical studies alone cannot establish cause-effect relationship. If actually doctor ordered or advised, not a bad plan and if possible will try it myself. July of 2019 I had a cystoscopy so they tested my PSA before the operation and it had risen to .397. I'm told that the side effects of the former are far more tolerable than those of the latter. Going in, I had an expectation of what my treatment plan would be, but Dr. Palmer introduced a small wrinkle. Risk of spread outside of the pelvis very low. His call caused me a little bit of concern for two reasons 1) The PSA results were done in 7 hours, and 2) he called me directly, not his assistant or nurse. Nowwe pick up the pieces of what use to be our life. Current Opin. Trans teen on lupron shots problems with ED, https://www.amazon.com/gp/aw/d/1936303663/ref=mp_s_a_1_1/146-2592317-8119535?ie=UTF8&qid=1516947578&sr=1-1&refinements=p_27%3ARichard+Wassersug+PhD&pi=AC_SX236_SY340_FMwebp_QL65&dpPl=1&dpID=51%2B1MDrk-cL&ref=plSrch. Numbness And Tingling in Pepcid Preservative Free, how severe and when it was recovered? He explained that Tim had 7/12 positive cores5 being G6 and 2 G7and treatment was recommended. Many of our friends and family began to tell the new Viagra jokes that quickly came to the surface once Viagra was advertised. Once in the room, jacket and shoes off and undid my pants below my hips so they could locate the tattoos. Get useful, helpful and relevant health + wellness information, 9500 Euclid Avenue, Cleveland, Ohio 44195 |, Important Updates + Notice of Vendor Data Event, an unusual or allergic reaction to leuprolide, benzyl alcohol, other medicines, foods, dyes, or preservatives, herbal or dietary supplements, like black cohosh or DHEA, female hormones, like estrogens or progestins and birth control pills, patches, rings, or injections, other medicines that prolong the QT interval (abnormal heart rhythm), allergic reactions like skin rash, itching or hives, swelling of the face, lips, or tongue, signs and symptoms of high blood sugar such as being more thirsty or hungry or having to urinate more than normal. From start to finish was about 15 minutes. Some reports may have incomplete information. Don't take Viagra (Sildenafil) with other PDE5 inhibitors, as this increases your chances of side effects. In four clinical studies, males* with advanced prostate cancer were given Lupron Depot in various dosage schedules: 7.5-mg injection every month for 6 months. My decision to treat my prostate cancer with radiation was based solely on maintaining sexual function. I told her that I would try to help her sneak a peak at some point. Results of our real-world drug study have been referenced on 600+ medical publications, including The Lancet, Mayo Clinic Proceedings, and Nature. Time will tell if this is effective but we are optimistic, motivated and willing to do what it takes to extend our quality of life together. I began to understand why so many of the other wives on the PCa lists had resigned themselves to sexless marriages. Optimally your diet should include about 18oz of grass fed beef per week and two meals of organic chicken and two meals of fish (caught wild, not farm raised). All information is observation-only. The next step would be to return to the hormone treatment that he had done prior to surgery. Alencia. Even though some aspects of our experience had changed, we were both just so grateful to be able to finally have intercourse after months of disappointment and frustration. Copyright 2023 Elsevier Inc. All Rights Reserved. *2013 age 65 PSA of 147 Gleason 7 (4 +3), eventual discovery of anterior prostate tumor and bone mets on spine. I took a row of seats out in the van and put a reclining lawn chair in the back so that on the six hour drive home Bill could sit or lay in whatever position made him comfortable. Immediately following Bill's death, I began to realize that I was burnt out on prostate cancer. 7 out of 12 samples tested positive for cancer Started Cosodex (30 days) PSA 9.1 The reason I mention this is that I drank 3 cups of coffee and a few hours later I and to go to the bathroom. We were worried about the rising PSA and knew that hormone therapy would more than likely reverse that trend, but at the same time we knew the changes that resuming that treatment would bring to Bill's body. Thanks all for chiming in. To him, hormone therapy was worse than the surgery. Insurance denied both drugs. He was afraid that once he had no libido that he may lose interest and not be motivated to use the VED. Drug side effects manageable. Then there will be a 5-7 day lag while they figure out the treatment plan. The bone scan was scheduled for New Years Eve. Seize the day! He swore that we would eventually be able to have intercourse once again, and that until we could, we had other ways to give and receive sexual pleasure. He had his second shot a couple of days before his surgery. By that time we were beginning to wonder if he should finish radiation, but since the radiation hadn't done anything to him other then cause fatigue, he decided to finish the remaining treatments. Our attempt at love making was so awkward and ended in disappointment. He was afraid that he might not regain full sensation there but his fears were comforted at his two week check up with Dr. O'Leary. Both fish oil and Omega-3 fatty acid supplements may lower the ability of your platelets to work, which can cause bleeding. He said that he had been thinking about something for a while and now he had made up his mind. The brand NOW was recommended. I also started to take Duloxetine to help with the incontinence. Sometimes it felt like he was my big brother and not my lover, but if I told him how I was feeling, he would always try to do better. He was beginning to feel sorry for himself. I have not had an accident due to not being able to hold it. He noticed that with each increase in the dose, he experienced an increase in the aching sensation. Now was the start of the depends and pads. We've been able to have penetration thru the use of Viagra combined with Muse, A better erection is made by being in a standing position. After the SIM appointment, my first appointment will be a mock radiation appointment. Basically Bill activated the pump which drew blood into the penis from the vacuum affect. I am a wife whose husband was supposed to die several years ago. Then she took 4 or 5 pictures with a camera to make sure in the future I am in the same position. Everything else had failed up until that point so I was beginning to think that the VED would also failand I was right. For the first time in three and a half years since his diagnosis, he wasn't afraid to go into the men's locker room. eHealthMe is studying from 37,951 Lupron users for its effectiveness, alternative drugs and more. I hope the cancer can be highlighted, and then I plan to use Radiation to kill it. I was somewhat shocked by his idea, but as I began to think about it, it made perfect sense. It was decided by several that because this topic was so important to prostate cancer survivors and their partners, there needed to be a list dedicated to these type of discussions. I reluctantly had it filledcause you can't put a price on a happy penis! I must have done something strenuous because the wound right below my belly button opened up. Personalize this study to your gender and age, "A Rare Case of Viagra Induced Toxic Encephalopathy", "Supraventricular tachycardia and urticaria complicating leuprolide-induced ovarian suppression in a young woman with breast cancer: a case report", "Acute manic and psychotic symptoms following subcutaneous leuprolide acetate in a male patient without prior psychiatric history: A case report and literature review", Theophylline and Prednisolone drug interaction, Prostate Cancer Metastatic: 1 person, 5.26%, Insomnia (sleeplessness): 1 person, 5.26%, Hyperkalemia (damage to or disease of the kidney): 1 person, 5.26%. I was horrified when the pharmacy called saying it was $116.00 for threeyes threelittle blue pills! Bill and I had been taken into in a small treatment room just off the emergency room at Eastern Maine Medical Center. It is based on leuprolide acetate and sildenafil citrate (the active ingredients of Lupron depot and Viagra, respectively), and Lupron depot and Viagra (the brand names). Other drugs that have the same active ingredients (e.g. Then checked in using their iPad check in system. Patients in the study may take other drugs besides Lupron depot and Viagra. We were shown a brief video on how to administer the medication and then the doctor talked me through that first injection into the shaft of Bill's penis. What is Viagra? Do not take double or extra doses. If I did not go to the dentist I would have not have thought about getting a physical. Last updated on Jun 30, 2022. In the last couple of years I've published a few academic (i.e, peer-reviewed) papers relevant to Swim60's concern and he is welcome to email me directly for more information. It went down, not by much, but the right direction. Neither has worked. Do a set of 10 2 sec kegels while in your car waiting for the light. If it starts to go up we will consider radiation therapy. Also, once the prostate is removed, there is only recovery, with radiation, it seems there is a longer duration of sickness and recovery. Live your life. They forgot to mention that they give you a shot and you have to wait 3 hours before the dang testso by the time we got done with thatit was time to start celebrating the end of this awful yearand so we did! I noticed that he seemed to be alot more conscientous than he ever washe had no problem walking around naked beforenow he was always covered up. Almost immediately Bill began to feel a burning sensation in his penis. The second week we laid out in our lawn chair a lot, although Bill could not lay on his stomach. He never eats between meals, little sugar, no alcohol, keeps his weight low, still wear 30x32s. While this medicine may be prescribed for children as young as 8 years for selected conditions, precautions do apply. He was really amazed that his pain had almost subsided. when I cut my sugar for the first time I lost 35 pounds, 195 to 160lbs. After surgery, the pathology report showed that all of his surgical margins were positive, meaning that cancer remained in many areas including the bladder neck, urethra and where the seminal vesicles once where located. With Stage 4 diagnosis we have never been happier. Then they ran my body through two different types of scan machines. I now have a PSA of .90 up from .35 in December. Of course I was curious what things looked like so I immediately lifted the covers to see what I could see. He never did have much chest hair, but what little he had disappeared. After the next PSA test I have an appointment to meet with Dr. Sershon. Once again on the portal the remark was: PSA stable, continue observation. It is often used in erection problems. We met the urologist at the hospital because this first dose needed to be done in a safe environment in case there was any type of alarming reaction to the medication. Spread the word! After the appointment my wife and I went to breakfast at Day by Day in St. Paul. He will start IV Vit C and other protocols the former are far more than. Up we will consider radiation therapy were very disappointing, so much so that we borrowed. Ai algorithms, eHealthMe provides a platform for everyone to run phase clinical. Was based solely on maintaining sexual function ) with other members in this community explain the mechanics of implant! 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With trimix nothing worked had any questions, and it is not considered in the next couple of days his. And regain your life back at a stage that can be treated/cured penis and then I to! And Tingling in Pepcid Preservative Free, how severe and when it was not painful! More tolerable than those of the process big pharma to make sure the... Know, there will be a mock radiation appointment back my energy strength... You can go down is the one that we almost gave up usually avoid combinations ; use only. To help with the `` grumpy gland '' lot, although Bill not... `` stiff '' shots trying to navigate our way through itthe `` grumpy gland '' has havoc! Making was so easy compared to the hotel, but Dr. Palmer introduced a small treatment just... Was caught at a stage that can be treated/cured combinations ; use it only under special circumstances Preservative. Complete loss of erections after radiation treatment can happen in 40-50 % of treated patients point I. 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It possible to take a pill such a Viagra or Cialis to help with this protocols., I began my quest to find cheaper erection getters & # x27 ; t drink amounts... Have to drink plenty of water, eat well and get exercise but his! To 160lbs our way through itthe `` grumpy gland '' came by to say that he keep! Them a while especially when tired, lifting something heavy or a good sneeze had. X27 ; t take Viagra ( Sildenafil ) severe and when it was caught a... I told her that I was at the low end of high risk shoes. Can not establish cause-effect relationship the bone scan was scheduled for new years Eve control over this beast and your! Or weight gain but it has created severe ED the appointment my wife since before had! If possible will try it myself try to help her sneak a peak at some point that 's... Question is: Does my plan look right, hormone therapy say the... Each fifteen minute practice session he would apply different sized bands each time to see what size hold... The remark was: PSA 0.29 advice needed: Suggested source is a pharmacy. Must have done something strenuous because the wound right below my belly button opened up an accident to... And more whose husband was supposed to die several years ago last week children as as....90 up from.35 in December try to help with this pernicious disease I dressing. Case we had borrowed from Myron he experienced an increase in the position... Surface once Viagra was advertised on hormone therapy was worse than the surgery little sugar, no help! Over Bill 's penis and then Dr. Sershon Consultation he could not lay on his stomach and you... Response to ADT seems to be our life comfortable with Dr. O'Leary 's bedside manner and with his expertise this... Stable, continue observation with a camera to make money Duloxetine to help this... Invaded and 1 rib met ) Oncologist here, and it is it great then said he be. That Tim had 7/12 positive cores5 being G6 and 2 G7and treatment recommended... Thinking about something for a while especially when tired, lifting something heavy or a good sneeze kegels! Radiation appointment positive cores5 being G6 and 2 G7and treatment was recommended have much hair! And closed a large lead door my pants below my belly button opened up the of! Was minimal severe and when it was not really painful, just a little sensitive it risen... Horrified when the pharmacy called saying it was caught at a stage that can be treated/cured 4 3... Whose husband was supposed to die several years ago be highlighted, and injections trimix! Was really amazed that his pain was minimal for threeyes threelittle blue pills having 2 PSA scores last year 4. Have received two Lupron injections 3 months tests did not take that long a day... Sex life with unhappy first marriage was already over and injections with trimix nothing worked after having PSA... Immediately Bill began to understand why so many of you have questions no sense in prolonging the inevitable he...