The First Chapter!
When I finally retired in 2011, I thought it was time for a change in life, a new chapter. My wife and I sold our home in Indianapolis, jumped in our motorhome and journeyed off to Wisconsin to enjoy life with our daughter and granddaughters. We had great fun in the motorhome visiting and searching for a new house. We made many friends there and enjoyed watching our daughters participate in various activities. Wei even got involved with the American Legion Post 356 for many events. Well daughters grow up, finish high school and go away to college. Time for the next chapter in our lives. After some thinking and planning we decided to sell the Wisconsin house, move into our motorhome full time and travel around the USA. The next year and a half were great fun as we met many new friends and saw wonderful places in this country. We joined a motorhome group and traveled to many of their events with our new friend. We had anticipated spending a couple more years traveling when it became apparent that my wife was very sick. Finding medical attention while on the road was getting very difficult due to the Covid pandemic. Our original intent was to travel back to Wisconsin and retire in the Tudor Oaks Retirement community where we had made a reservation. After getting some medical attention in Indianapolis and since my brother and his wife were here in Indianapolis, we started looking for a retirement community here. After not enough research and with some health concerns we chose to open yet another chapter in our lives by moving into a cottage on the grounds of Westminster Village North. Life there was moving along well with meeting new friends and getting more medical attention until a routing MRI to see what might be causing my right leg to give me pain when I walk showed some new surprises. July 2, 2024, was the eventful day that proved to reveal not what might fix my leg problem but an introduction to my next chapter. Actually to be exact, a call on July 3, 2024, from the doctor that was trying to treat my leg problem revealed the details of this next chapter. After a preventative care lab test early Monday July 8, 2024, and a consultation with Dr. Daniel Sonnenburg MD that afternoon I will begin providing the more intimate details of this chapter.
Sunday was the first Sunday of the month and that is the time on a monthly basis that I have a Zoom session with my good friend Bill in California, Bill and I were buds in college and we shared some flying time in a Cessna 182 with a tail number 2029G, gingerly called two niner golf. Bill was in good health and his cancer seems to be a stable point with some blood tests not varying too much with ups and downs. I shared with him my current situation with the possibility of prostate cancer and that of course didn’t make him happy for me. We discussed one of the things about kids things we were doing and how life was going in general and I shared how Carolyn was having some problems with having possibly had a mild stroke. After a little discussion we ended our session talking about the marvelous status of politics in these United States. More on that subject next month.
After the Zoom session I went to the Quest website to schedule a lab draw that was requested by my MyChart entry. I tried to log on to create an account and after numerous attempts I wasn’t successful. so I finally used the guest entry and scheduled my blood draw for Monday at 8:40 since my wife had an appointment with the Whisper Center at 8:00 on Monday. I thought it would make it convenient for us to not have to make two trips in the same direction. Well, it turns out her specialist was sick, and the replacement person was 20 minutes late so while she was waiting for that I slid down to the quest that was located in our building and got the blood drawn. After that we went to lunch with my brother and his wife at MCL and we shared with them the possibility that I was now experiencing problems with prostate cancer. After lunch it was time to go back home and wait for time to go back to the hospital and see the oncologist about my problems.
The visit to the Community Health Network MDAnderson Cancer Center was a new experience for me. The staff was very friendly and the usual weight, height, pulse, oxygen level and blood pressure were checked. After a short weight Dr. Sonnenburg MD and his assistant nurse Navarro NP entered the room, and the long discussion began. The primary subject was my history of Prostate Cancer and why when my PSA level started testing above zero ten years after my surgery did I not have radiation treatments at the time. Dr. Sonnenburg indicated that that was a bad mistake. After a discussion of the labs that I had taken at Quest Labs in the morning it was determined that a PSA draw was not a part of that draw, and one was needed. The plan was developed that I would have the PSA draw here and go to scheduling to arrange for a PSMA PET scan and another appointment with Dr Sonnenburg. After the doctor and assistant left, a nurse arrived and tried twice to find blood. She finally succeeded and it was time to schedule things. The attempt to schedule the PET scan failed because it had to be approved not by a doctor but by Medicare. So, no PSMA PET schedule for today.
The second day after the visit to the cancer center, I checked MyChart to see if the results of the PSA test had been reported. It had and the news was very disappointing. A value of 30.28 is way out of range and bodes signs of significant problems. I cannot wait to hear Dr Sonnenburg’s reaction to this. Time to wait for Medicare to do its thing.
This is a new experience for me. I have had illnesses in the past but never this late in life. has a little It is like what am I doing now sitting and waiting for Medicare to decide that they’re going to let me get the treatment that I need. Is there a treatment that I need. Will it be effective and what will happen if it is effective for the rest of my life. So here I sit waiting and wondering thinking wouldn’t it be nice if all the answers for all the world’s problems could be found on ChatGPT but that’s not the case. So, I guess I’ll keep blogging and keep waiting and keep hoping that there is something good about to happen around the corner. So that’s all for now so have fun and let life take you wherever it takes you.
I was not satisfied with the information that I received during my chat with Medicare, so I decided to stir up the mud in the pot a little bit. First, I called the office of the oncology doctor that is representing me and received no answer, so I left a message and well guess what no return call. With this information in mind, I went to MyChart and sent a message to the doctor saying I received this information from Medicare and don’t see any request for preauthorization on my account. Could you possibly put me in contact with an oncology navigator so that I could contact them about this problem? I may have poked the pig in the eye on this one. Soon after that I received a reply with a name that I could contact. I sent her a message about my problem with the PEP scan approval process. I received her reprieve very shortly through MyChart from an individual who might be my oncology navigator saying she would investigate the problem. The next day, today I received a message from her saying that the scan did not require Medicare authorization and that an authorization group internally to the hospital was reviewing it and that the scan was marked as approved. So, we shall wait to see what happens next.
I guess I did stir up the pot a bit because I got a call about 10:30 AM today saying the PSMA PET scan had been approved. I wasted no time scheduled it for next Tuesday July 16. I then got a call about 11:15 AM requesting that I schedule an appointment with the medical oncologist. That was schedule for Friday July 19. Next week will be an interesting week with three doctor appointments in one week.
It is Monday and I had my first appointment with my new family doctor since my previous one left the practice. He is a young energetic individual who had reviewed my records and already ordered a year worth of meds for me. He also showed me the lab results and commented on all the important ones. I think this will be a good relationship for the future.
I got my courtesy call from the cancer center to be sure I was planning to show up for my PET scan tomorrow. She reviewed the procedures again and I confirmed that I would be there if the creek don’s rise.
The PSMA PET went quite well. First, they explained all that was to happen and while I answered some questions the nurse inserted an IV and administered the radioactive material. I was in a small room in a very convertible chare that could be tilted back like a Lacy Bou and told I could use my phone or watch the TV for the next hour while the medicine circulated in my body. After about an hour they ushered me into the room containing the machine that would administer the scan. It was not noisy like an MRI, but I had to put my arms over my head and that was very trying. Then it was over, and we left.
The report appeared in my MyChart the second day after the scan. It does not look too good because it did show spots of prostate cancer. Also, information on the scan showed some blockage in my blood vessels that may be who I am having high blood pressure problems. I sent a copy of a section about the blockage to my cardiologist so that he could interpret it for me when I see him next week. All there is to do now is to wait for my appointment with the oncologist on Friday.
It is Friday July 19 and my second visit with my oncologist to discuss the results of the PSMA PET scan. The news was not good. Prostate cancer is back with a vengeance and treatment is necessary. The better news is that oral chemotherapy may be a solution. The plan is to let the chemo reduce the amount of testosterone in my system. The theory is that testosterone feeds the cancer and removing some of it may slow down the growth of the cancer. The not so good side is that this chemo is very dangerous and is not to be handled or stored in a pill case. Fatigue and hot flashes are some of the side effects so the journey may be a struggle at best. Guess it is better than dying,
The chemo can only be obtained from a laboratory. So, on Monday the lab will confirm my address and deliver the toxins. The oncologist also ordered the drugs that were not talked about during the session. They both seem to be for treatment of nausea so we will see what that is about. They were ordered through Walgreen and will also be available on Monday. Well, here we go.
When we tried to schedule a follow up appointment for one month there was no one available to schedule it. We waited for a while and finally gave up trying to try again later.
Monday July 22 was a very good day. I had a visit with my cardiologist to discuss the information presented to me by my oncologist on Friday. It was convenient that this annual review appointment came just after the cancer diagnosis. The cancer medications side effects can cause heart arrhythmias, increased blood pressure and fatigue. He indicated that might not be problem because he had other patients on the meds. The other problem we discussed was the increase in my blood pressure starting in late June. The doubling of the dosage of Carvedilol seems to have helped that problem. I also asked him about a concern I have that the blood pressure readings I got during the last two doctor visits was lower that what I got from the unit we have at home. He scheduled an appointment with the Heart Center pharmacist to have our home cuff units tested.
After leaving the heart center we returned to the cancer center to see if we could schedule a follow up appointment with the oncologist. This time we succeeded. While there I called the Specialty Pharmacy to give them the delivery address for the cancer drug deliver. Express Script – Tricare had approved the filling of the prescription and the cost to us would be $43.00 for each prescription.
Tuesday has not been as productive as Monday. We received a message from Express script that one of the medications that was being delivered was courtesy filling and I would receive on more courtesy filling and then the cost would be $13676.44 per month or 164,117.28 per year. That is not going to happen. Express Scripts suggested a substitute medication which they were in hoots with. Just sent a message to my oncologist about this turn of events to see what might be done. Will wait for what is to happen next.
Well after three very frustrating days, numerous chats, emails, and MyChart messages along with multiple phone calls the reason for the problem has been found. Someone sent the chemo prescriptions to Express Script. This prompted them to send a message that this medication was not a part of my plan, I misinterpreted the message saying I should switch to Accredo. What I should have understood is that I should file the prescript with Accredo. It seems that Tricare has two facilities for fulfilling prescriptions. Express Scripts for regular prescriptions and Accredo for specialized medications. The prescription had also been sent to Community Hospital North Specialty Pharmacy and they had followed the correct procedure for filling it through Accredo. All is well now and I will be receiving the medications as needed.
D day is today for the start of the chemo treatments. And it really was D day for disaster. The first dose was a three-pill load to start the treatment and I received a note that they found fourteen active cases of Covid 19 in the Health Center here at Westminster Village North.
Days two and three went without any incident other than a great increase in fatigue and an never-ending feeling for a need for food. I have not been this hungry for a long time. None of the anticipated symptoms have appeared yet for which I an eternally grateful.
During my visit with my cardiologist, I informed hm of an observation that the blood pressure readings it received when visiting a doctor were always much lower than the measurement I got at home. He asked what kind of instrument we used and said maybe it needed to be calibrated. How does one get them calibrated. He suggested an appointment with the hospital pharmacist who could do that. An appointment was scheduled for Monday July 29 with the pharmacist. The process of calibration was not what I expected. I thought they would have some kind of instrument that would simulate blood pressure and see what our home device indicated. Surprise, all they did was to have the PA measure my blood pressure with their calibrated instrument and then measure it again using our two home instruments. Well, our units registered higher that the PA’s measurement by at least ten percent. I guess calibration means sending the instrument to a repair shop for adjustment in the readings. The plan now is to collect my blood pressure readings for the next two weeks and send that to the pharmacist for him to evaluate and suggest other blood pressure medicine when I visit with him on August 16. I informed him that a change in heart medications would have to be cleared with the Cancer center and that could take weeks based on previous experience.
It is day nine on the march through time and so far, the chemotherapy has not produced any new symptoms. The tiredness and lack of motivation is still there and that may be psychological more than physical. The next major event will be a PSA blood draw and a visit to my oncologist.
I registered with a men’s cancer support group a few days ago and today I spend most of the morning reading postings from other cancer patients. I am surprised at the number of treatment plans and medicines that are being used to treat the disease. Also the diagnostic techniques are not as standard as I would have predicted. If my treatment plan continues to work, I will be very thankful compared to some to the problems other individuals are having. There are also a variety of medicines to treat the side effects of the various treatment plans.
I had a zoom with my friend Bill again today and related the latest results of my tests and treatment plans. He is not doing so this time so I will be anxious to see how he is doing the next time we talk.
Nothing major has happened these few days but a few minor events have occurred since my talk with Bill. They are singular events, and my wife suggested I should write about them in case the become important in the future. The first one was a change in my taste buds. Food does not taste as good as it used to and even filtered water has a acidic taste. The second event was waking up with a very dry mouth such that I got up for a drink of water. That helped and let me go back to sleep. The next event happened in bed at night. I woke up to psychedelic images followed by nausea and stomach pain which after jumping out of bed turned into a very bad case of diarrhea. It continued into the next day as well. This event occurred on the fourteenth day of my treatment plan. The last small event was a pain on my face close to my right ear. It was a muscle spasm type of pain. Sharp and short. It continued off and on during the night and has not occurred yet today.
Today is a no foot in the air day after watering the flowers and washing the dishes. Guess there will be days like this. I also spent some rest time reviewing all the Tricare claims because of the email they sent me saying that I had some new ones. They were all small claims but it was difficult to determine what doctor visit or treatment was covered by the claim. I may need to keep a record of when, where and who I see and try to match that to the claims. Checking Medicare may also help clarify the issue. There sure is a lot of paperwork in being sick.
The visit to the pharmacist today was a ho hum. It was scheduled as a follow up to the testing of our blood pressure measuring instrument. He handed me over to the newest member of the staff, and she reviewed the two-week log that I had collected at his request and said all looked well. Then she reviewed each medication and decided that what I was taking was ok. I am to continue recording blood pressure readings and in two weeks review them with her in a phone interview. I am glad she did not think it necessary to change a medications because that would be a long process to coordinate with four doctors.
The next months’ worth of chemotherapy arrived today, and it contained an envelope addressed and stamped for CHN Specialty Pharmacy. It also contained an invoice for me to send the check for $86.00 for the medication. Another happy month of feeling tired and lazy.
Well, I am on day thirty of the treatment plan and the symptoms have not change greatly. The hot flashes come a little more frequently but not more intense. I guess am lucky.
I went to my first dental appointment yesterday since the treatment started and it went well. The dentist was concerned about dry mouth. He indicated that if this occurs, I should contact him for a prescription that would this because sometimes the cavities just pop out in numbers if the dry mouth is not treated. I experience some dry mouth at times at night and will monitor it if it gets any worse.
Only five more days to the first checkup after the beginning of the temperature and a possible review of the effectiveness of the plan.
Day thirty-one went by with the usual side effects of the chemotherapy. Day thirty-two was a bird of a different feather. The hot flashes began right after noon lunch and continued intensifying into late evening. The fatigue was so intense that we watched the news and one Netflix program and decided to read until it was time to start bedtime preparations. The process of going to sleep went about as usual and then I became aware at midnight that my legs were throbbing and jerking spasmodically, I was starting to feel nauseous, and the neuropathy was worse than usual. Trying to find a position where I could sleep was impossible, so I got up, got a blanked because I was now freezing and went to rest in my recliner. After about an hour I stopped shaking from the chilling and the leg jerking slowed down and the nausea seemed to disappear. I returned to bed and after a short period I must have found a position where I could go to sleep. I awoke about 6:00 because I had to urinate and laid in bed until the alarm went off at 7:00 am. I hope that this was a one off and not to be a nightly occurrence from here on.
The trip to the vampire was not as bad as expected. The results will not be available for two days. The visit with my oncologist was not to meaningful because we did not have the results of the PSA analysis. We talked about side effects, and he suggested that there was medicine that he could prescribe for the hot flashes. I said that they would have to get worse before I add any more medications to my schedule. My navigator showed up late for the meeting and after the oncologist left the room, we had a good talk about what the role of a navigator is and is not. She left and came back with a binder of new and old information about services provided by the Cancer Center. There is a support group sponsored by the Cancer Center, but it seemed be for other kinds of cancer and not specifically for prostate cancer.
Twp days later the results of the blood tests arrived in my chart and almost everything looks very good including the PSA. It was 0.4. I am not sure what that really means and am anxious to meet with my oncologist next month to see what he says.
Yesterday, day forty-three of my treatment plan was a very bad day. I had the worst hot flashes I have had since I started taking the meds. I was totally exhausted shortly after it started and lasted well into the night. I am feeling somewhat better today so I will wait and see if that was a one unique event or the start of a pattern. If this becomes a pattern, I think I will ask my oncologist to prescribe the medication for the hot flashes.
Well the hot flashes have not been as bad as that firs round but things have been very hectic these last few weeks. The Community Hospital Network Specialty Pharmacy tried to fill the two scripts that they had filled last month and Tricare/Express Scripts said nope. The process of trying to get switched to Accredo for the Erleada was long and complicated.
The first thing I had to do was to call Tricare and say what the hell is going on. It turned out that I was actually talking to a representative of Express Scripts. She looked at my records and assured me that Express Scripts would continue to fulfill the script for Orgovyx but the Erleada script will have to be filled by Accredo. She called Accredo and discussed my situation with them and after a few minutes she turned me over to the representative of Accredo. This representative said I would have to create an account and there I would find all the information I needed. After some discussion it became apparent that getting my medication on time would be a problem. It took many minutes for her to finally decide that they could ship the medication in time. I had also had such a discussion with the Express Script representative in the previous conversation expressing my urgent need and suggesting I would pay for an overnight shipment. She said that was not necessary.
Two days expired and the shipment of Erleada did arrive, and the copay was $38.00 One down and one to go.
Today was the day for my monthly video chat with Alexandra RPh about my blood pressure. I had been trying to send him the requested reading but he was not apart of my care team on MyChart. I finally sent a message to Dr. Robinsons nurse and ask if she could help. She suggested I send the reading to Dr Robinson. I did that with a message to possibly have him forward the files to Alexander RPh. That seemed to work when we started the video chat Alexander PHR had seen the reports and thought things seemed to be going well. He suggested that there was a medication that could replace Carvedilol and it did not conflict with the chemotherapy medications. I suggested that with the problems I am having with Express Script it might be better to wait until the refill process settles down before we make any changes. We decided to wait a month for another video chat and see what we wanted to do.
Well today is the day. Will Express Script come through with the shipment of Orgovyx of not.
Well, the Express Script shipmen did arrive as did the one from Arrcredo so everything is good or the next month. The next process is to find out how to arrange a prescription for the next shipment from Accredo. Dr Sonnenburg would have to send a script to them if this process is going to work. So off to taking meds.
The visit to the Cancer Center for a blood draw was a disaster. The first person tried painfully twice my right arm and went too deep with the needle. I said enough so she called for an associate, and she got blood on the first try from my left arm. Unexpectedly the results showed up in MyChart before my appointment with Dr. Sonnenburg’s PA. That appointment was a waste of time. She asked me how it was going, and I related the problem with hot flashes and fatigue. She suggested that some individuals have some relief from Vitamin E 400 units bid. The appointment ended with her suggesting that I see her again in two months. She also provided me with a printed blood draw order so the I could go to Quest on 56th Street a few days before the next appointment. She also said she would see that the appropriate prescription for Erleada was sent to Accredo.
As it turns out a few days later when I logged onto Accredo there was a script ready to be filled
Since everyone thinks that my Prostate cancer is on the way to being controlled, I decided to contact Dr. Nathan Farlow to arrange an appointment. I would like him to review that MRI that he had ordered and was the one that sent me scurrying to an oncologist. He might also be able to review the PET scan to see if there is anything that could explain why my legs and back hurt. Well, I was successful in getting a very early appointment so we will see what he has to say.
I did get a bottle of Vitamin E 400 units and started taking one morning and evening. I do not think that it has made a major improvement in the hot flashes but will finish the bottle before giving up.
It was time for my next visit with Alexander Rph. This time he was on my care team list to I sent the report to him and waited for the video. He reaffirmed that he thought I should switch from the Carvedilol to a new prescription Amlodipione/Norvasc. He suggested this because it would not interfere with my chemotherapy medications, and I could be less rigid about taking the chemo. I decided that it would be a big help in scheduling so I said how it would work. The plan is to stop taking Carvedilol in the morning and gradually wean away from that mediation for about a week and then make the switch. I asked him if he would check with Dr. Robinson to be sure he was onboard with the change, and I guess he did that because the new script for Norvasc was made by Dr. Robinson.
With the medication adjustments it was time to meet Dr Farlow about my leg pain. He reviewed the MRI with me and the knee x-ray and said that there was nothing there that would explain the back and leg pain. What a disappointment. After discussing some possible options, we worked out a plan that would consist of me having an EMG and a visit to a sports doctor. He initiated a referral for both items and that it for him. Community Hospital North called to schedule the EMG but getting an appointment with the sport doctor would be in February unless I would visit his PA instead. Guess that would have to be the way it would be.
The EMG was not very painful with the Neurology masking most of the needle sticks. The shocks did wake up my leg and foot. The whole process took less than twenty minutes.
Dr. Farlow called the same afternoon to say the EMG showed a deterioration of the function of the muscles but not enough to explain the pain problems. Well, that was not a big help. Just must wait to see what the sprots medicine PA has to say. I am not hopeful at this point that anything can be done to relieve me other than some kind of pain medication which was one other option that Dr. Farlow had suggested. I’m not happy about another medication to have to swallow but if that is the only option left I guess I my try in sometime soon.
The appointment to the sports medicine to the PA was cancelled because she does not du knees. No idea what kind of sports medicine she does. I arranged another appointment with someone from the sports medicine clinic and it turned out to be Dr. Joshua Kluetz, DO l and from a comment he made it seems that I had an appointment with him a long time ago. He gave me a very thorough exam and ordered an x-ray of the leg. He then came back and reviewed the x-ray and said everything was good for the joints and bonds of my right leg. No indication of anything that could be causing the pain. He offered physical therapy appointments or exercises to do at home. I chose exercises at home. Next appointment will be scheduled in two weeks of the exercises do not help with the pain.
Surprise upon surprise I got a call from Accredo wanting to schedule my next medication shipment. I could not get to my phone soon enough, so it went to voice mail. I called the number back right away and the woman who answered had no idea what the call was for. After taking appropriate information and a long delay, she determined the call was to schedule my next shipment. Wednesday week next will be the shipment date. This is quite a difference from the problems we had getting the shipment scheduled last time. The next day I got an e-mail from Accredo noting the shipment date. They sure have changed the way they take care of me since the last few times. It was great news.
I have started the heat, exercise, and cold treatment as prescribed by the doctor so we will see if it helps.
Another surprise today when I got am e-mail for Express Scripts saying my next shipment of apalutamide tablets will arrive next week.
The shipment of Erleada arrived as promised but no shipment scheduled Express Script. Since it was time for the next shipment of Orgovyx I logged onto Express Scripts and sure enough there was an order pending but not ship date so I tried to expedite the shipment so we will see what happens. In the meantime I read the information sheets about Erleada/Apalutamide from Accredo said “Accidental falls may be more common in older adults who take apalutamide. Use caution to avoid falling or accidental injury”. Surprise, I guess I missed that information before. This could be the reason I have fallen three times in the last two weeks. I have an appointment with a PA of my PCP so maybe she can shed some light on this issue.
I guess I do not know how to use caution to avoid falling because I just experienced fall five. It was in the bedroom and my left foot did not lift properly so my toe caught and down I went.
I logged onto Express Script again this morning and changed the setting so that email messages would contain the name of the medication and my first name. It was just too confusing with only one letter each. I also scheduled shipment of two more medications. The order of Orgovyx is still in processing status. I hope they get their act together and ship the next order in the next four days.
Just when I thought things had settled down to a good scheduling process, I discovered it was not. Since I had not received an e-mail or other communication that my next Orgovyx shipment was on the way I logged onto the Express Script website once again and the order was still in the processing state. There was a chat tab on the website so ii decided to see if I could speed up the processing a bit. After a ten-minute wait for someone to chat with me I gave up. Guess I will have to use the phone. I called and the wait time was announced as twenty minutes, so I gave up. I am very frustrated with how to make this procedure more painless.
The next afternoon while I was in a concert at Westminster Village North I received a call from Express Script wanting to schedule my next shipment. Interesting timing and certainly not prompted by anything I had done. She asked the usual questions and scheduled my next appointment a little close to when I would not have any more medicine. She also asked if I was taking Erleada and would I like to schedule that shipment. Without thinking I said yes which was a mistake because I had already received my next shipment of it. That led me having to go back to the Express Script website and straighten out the mess I had created by answering the question the wrong way. I am not hopeful at this time of every getting everything shipped on time with any assurance of regularity.
Well, I have really screwed up this time by not listening carefully when talking to Express Script. What she saw was a script for Eliquis tables which I am no longer taking. So, guess what. I got a shipment of ninety-day tabs from Express Script which I will never use. I am sorry that happened because it is an expense to me and to the government, but I guess there will be mistakes from time to time. I resolve to listen more closely to phone conversations.
It is time for me to have blood drawn to check the status of all things that might be impacted by chemotherapy. We tried to schedule this at Quest through the phone application and that turned out to be a failure, so we had to schedule an appointment later in the day at the kiosk. When we returned later we showed up on the panel and the vampire was very efficient and painless and on time
The results showed up on MyChart the next day and all seemed to be going, and the PSA was down to 0.11. Slowly gaining ground on the problem,
With the blood drawings done it was time for a video chat with Angel. She is Dr. Sonnenburg’s PA. The chat went as expected and I related the falls I had experienced during the months of October and November. I also indicated the serious fatigue I was experiencing. With this information and a few other questions, she decided it might be worth checking if Erleada is what might be causing the falling and fatigue issues. The plan presented was to stop taking Erleada completely for the next two weeks and see if that might be the cause of the problems. If that procedure seems to help the next step might be to reduce the dosage level from 240 mg to an 80 ml level. Time will tell if anything changes in the next two weeks.
Today I decided to review the side effects of Erleada to see if not taking it had reduced the effects of the side effects on my body. In the process of this review I discovered that Erleada and Orgonyx are not chemotherapy drugs after all. Sorry to have misinformed you all the time. Erleada belongs to a class of medications called androgen receptor inhibitors. It works by blocking the effects of androgen (a male reproductive hormone) to stop the growth and spread of cancer cells. Orgovyx (relugolix) is a prescription medicine used to treat advanced prostate cancer in adult men. Relugolix belongs to a class of medications called gonadotropin-releasing hormone (GnRH) receptor antagonists.
Orgovyx tablets work by decreasing the amount of testosterone (a male hormone) produced by the body. This may slow or stop the spread of prostate cancer cells that need testosterone grow.
I have not been taking Erleada for four days and I do not think the side effects have reduced all that much. I may be a little less fall prone than when taking the drug.
It has been eight days, and I do feel less exhausted at the end of the day. The fall risk is still with me as is the vinegar taste. Hot flashed are less somedays and worse on others. I am not optimistic that reducing the Erleada to 80 mg will really help my overall side effects of the drug.
I have been so involved with trying to schedule the shipment of the drugs and working with Express Scripts for shipments that I have neglected logging me experiences with relief of my right leg pain. The first attempt at a solution to the right leg pain was a visit to my PCP Dr. Jason Lee on February 21, 2024. He examined my knee and ordered an X-ray knee right 3 views. When this did not reveal any significant damage, he recommended physical therapy. I attended four sessions of physical therapy. This stopped after the fourth session because the physical therapist said there was nothing more she could suggest because all her efforts had produced not significant results. I returned for my second appointment on April 3, 2024, with Dr. Jason Lee to confirm that the physical therapy was not solving the problem. He suggested that I make an appointment with Dr. Nathan Farlow at the Community Spine Center. The appointment was April 15, 204. He examined my knee and leg and could not determine any thing was wrong. Another appointment was scheduled for June 7, 2024, at which time he again examined my knee and decided it was time for some lab work. He ordered an MRI lumbar spine with and without IV contrast. This is when things started to go downhill very fast. He called on July 3, 2024, and Carolyn answered the phone at which time he said forget the leg pain for the moment because the MRI showed that I had lesions on my spinal cord that signed that my Prostate Cancer had returned big time.
In between all this I had an appointment with Joshua Kluetz DO at the CPN Orthopedic Specialty Care on April 23, 2024 for reason that have escaped me at this time.
The next activity on the calendar after my appointment with Dr. Nathon Farlow MD on June 7, 2024 was an appointment at the Community DM Anderson Cancer Center with Dr. Daniel Sonnenburg on July 8, 2024. This is an appointment that Dr. Nathan Farlow had promoted based on his observation of the MRI data. Most of the details about the cancer treatment have been written about previously in the document. To fill in any gaps I will paint the picture of the chronological activities as they unfolded.
It was time for the annual Medicare wellness check, so I called for an appointment with my PCP Dr. Jason Lee only to find out he was not there anymore and the appointment was made to Michael Gelatt DO on July 15, 2024. He did the usual PCP physical exam and said I was in good health given the Prostate Cancer issue Because I was a new patient to him, he ordered a full panel of blood work. Nothing significant appeared in the report from the blood work.
On July 8, 2024 Dr Sonnenburg ordered a PSA Diagnostic blood drawn with the first results of the presence of the Prostate Cancer at a PSA level of 0.41. The chase was on. On July 16, 2024, I paid a visit to the Community Cancer Center where Elizabeth Navarro NP administered a PET CT PYLARIFY Mid-through to Vertex. This scan verified that the cancer was there, and a treatment plan was needed.
On July 19, 2024 I had an appointment with Dr. Sonnenburg to discuss the treatment plan. I also had talked to Rebecca from the Medication Assistance Program, Christeen from the CHN SPECIALTY PHARACY department, Kate RN from the V ONCOLOGY NAVIGATION department and Lushawna RPh from the CHN SPECIALTY PHARMACY department filling me in on the various services offered by the Cancer Center
The involvement of the CHM SPECIALTY PHAMACY was to be the biggest problem in my receiving the Erleada medication from Express Script.
As chance would have it the time for my annual visit to one of my cardiologists popped up on the schedule. On July 22, 2024, I visited with Dr. Robertson, and he asked the usual questions and said all seemed to be going well. He had reviewed the strips I had sent to him and noted the PVC’s nothing concerned him from what he say on the scripts. I asked him why when the nurse takes my blood pressure here in I office it is so much lower than when I take it at home. He suggested that there might be something wrong with my measuring device and he suggested that he make an appointment with the pharmacy department where they could test my equipment. The appointment was set for July 29, 2024, with Dr. Alexander RPH from the Heart Center. The tests consisted of his nurse taking my pulse with their cuff and stethoscope and then taking my pulse using both of our Omron blood pressure devices. The results were that our equipment was about 10 percent higher than her reading. Since there is no inexpensive way to adjust our equipment, we should live with the results knowing that it is going to be a little higher than reality. He suggested that a change in the heart medication might make it easier to take all the cancer medications because what he suggested would not interfere with the cancer medications and so they could be taken at any time during the day. This is a suggestion to be reviewed in the future because I indicated any changes would have to be approved with the staff of the Cancer Center.
My next visit was with Sara from the Specialty Pharmacy on August 15, 2024 to confirm shipment of the next month’s worth of Eliada.
It was time to visit Alexander RPh for the decision to change my blood pressure medication. I decided to go ahead and give it a try.
On August 28 I presented myself at Quest for another blood draw th check the effects the medication might be having on my body. This was after a visit with Dr. Sonnenburg to have him order the blood draw.
On September 11 I had a discussion with Katherine RPH from the Specialty Pharmacy telling me how to obtain the need medication from Accredo and the Specialty Pharmacy will no longer be servicing my medication needs. On September 19 I received a short note from Nurse Sandra confirming the transfer of the source of the medication.
September 20,024 was time for another video visit with Alexander RPh to review my blood pressure report and to determine it the new medication was working. He seemed satisfied even though I thought the report showed a few too many high measurements. More visits in the future to track this.
September 27 blood draw ordered and a visit to Quest on 56th street provided the necessary collection of the draw.
October 21, is the next visit with Alexander RPh to review the blood pressure report that I sent to him. He is still satisfied with the reading and wants me to continue with the new medication . I am still a little skeptical but will continue as planned.
October 25, I had my second visit with Dr Nathan Farlow, MD to be examined and to try to find a release of the leg pain. The MRI he had previously ordered and reviewed was reevaluated at my request and was not indicating anything that could be related to the leg pain. He ordered an Ambulatory referral to Sports Medicine (C Doxey MD)
November 1 I went to the neuroloty department and Community North for and EMG as ordered by Dr Fallow.
On November 1 Dr. Nathan Fallow MD telephoned to inform us that the EMG he had ordered did not produce conclusive evidence other than the presence of significant neuropathy and probably had very little to do with the leg pain.
It was time for another visit to Joshua Kluetz, DO for him to examine me and review the results of the EMG which was He reviewed recent EMG results of the right lower leg. EMG confirms severe length-dependent sensorimotor axonal polyneuropathy. No new peripheral nerve or lumbar nerve root abnormalities He also ordered an X-ray right tibia and fibula which revealed no abnormalities. His treatment plan recommendation was physical therapy and Community Hospital or at home exercises. I chose the home exercises, and he printed samples of what exercises I was to do daily. He also recommended the purchase and use of tall compression sock to wear during the day and at night. I was to follow up in 6-8 weeks if needed. I purchased and used and found very little relief from the pain using them. The exercises did seem to help al little but and did not total relieve the pain.
Well surprise upon surprise it is November 18 and time for another video visit with Alexander RPh to review my blood pressure readings. He is still satisfied with what he sees so I guess the plan is to keep with the plan.
On November 27 another video conference and this time it was with Angela Scaringe, NP. is Dr. Sonnenburg’s PA. Purpose of the visit was to discuss symptoms and how they may have changed or improved since the as video chat. I reported the worsening of the fatigue, and the intensity of the hot flashes were still the major symptoms. Because of the serious problems of a fall risk she ordered me to discontinue the 240 mg Erleada medication for two weeks to see if that might the less of a problem.
The next virtual visit on December 11 with Angela Scaringe, NP was to order the change in the Erleada medication. To reduce the fall symptoms, she recommended a switch from 240mg tables to three 60 mg tablets. The order was placed and the Accredo group came through with flying colors, so I resumed taking Erleada at the new prescription level.
I am now cruising along with no recognizable change in the symptoms. More to come after I am on the plan for a little longer.
On December 12, 2024, I had an office visit with Hanna King PA which was an ambulatory referral to the sport medicine department. We discipled my fall risk, my knee pain and prostate cancer. Referral for a second opinion was requested, and one was placed with the scheduling personnel. The sports medicine department would call to schedule.
The request was filled by a follow up appointment with Joshua Kluetz DO which was not the meaning of a second opinion. His examination was brief and resulted in the following conclusions.
“He reports he no longer has the pain in the right lateral lower leg. He feels pain with weightbearing over the lateral aspect of the right knee. He has been diligently performing the prescribed home exercises targeting the affected area. He experiences pain upon prolonged standing and weight-bearing activities. An EMG test revealed extensive neuropathy and nerve damage. Despite attempts to alleviate the discomfort with compression socks, there was no noticeable improvement. However, he found some relief with the use of a knee sleeve.”
The next step is an MRI knee right without contrast. He will review the results of this test and call me with his findings. No further treatment plan was discussed.