I had my 3 month oncology visit on the December 7th. This visit was unique in that my brother Virgil went with me. For this visit, I had my normal blood draws plus an infusion of Zometa to help with my bone density. As usual, I discussed with Dr Lam my normal post treatment side effects of Chronic Radiation Enteritis and Dysuria. Dr Lam is a little less of a ray of sunshine like Dr Turner in that he says I could deal with these issues for the rest of my life. Nice. But he is just trying to have me mentally prepared if the side effects continue. There was another gentlemen there getting some infusions in the chair next to me. He had a recurrence and is trying to fight the disease as it continues to spread around his bones. He is trying an immunotherapy treatment called Provenge. Looks promising. It is a very strange feeling to be in a chair next to a guy treating his stage 4 cancer knowing that he went through the same treatment program I just went through. You tell yourself “I hope that is not me in 5 to 10 years” but the fact is that 25 to 30% of prostate cancer guys have a recurrence. So you just go on and try not to let that little voice in the back of your head bug you. As for the Zometa treatment, I hate it. It comes with a couple days of bone pain that always makes me curl up. Sucks. I hope it is working. I go in for a bone density scan this month to see if the hormone treatments had negative effect on my bones… at least more than they expected. Normal is 10% density loss.
So I got the test results:
PSA: 0.19 up from 0.09
Testosterone: 198 up from 71
So my psa went up again. The fact that I still have a prostate could account for the psa. Dr Lam tells me he will be more concerned if I get to 0.50 as that would be more than my radiated prostate should give out. We will continue to monitor it and I will post the results here.
For the testosterone, it to a big jump, more than doubled. That is good news. I do feel better and the hot flashes are just about gone now. So good news! Damn I hated those hot flashes and night sweats. I still have some fatigue but that will get better as time goes on. For now, things moving in the right direction.
My next appointment is March. I will update you all then!
I thought I should put out another update since I just had my first 3 month checkup. It is weird, there is this anxiety about going to get a PSA test now. I just went through all this treatment, and I just can’t imagine starting up again. That would suck. So I went in for my check-up. I discussed with my Medical Oncologist, Dr Turner, about my current side effects, the Chronic Radiation Enteritis and Dysuria. He is hoping I have some relief of symptoms after the 24 month when my radiation stopped. I am 16 months past now. So maybe some relief by May. I can only hope! I got my blood taken and then left. I anxiously awaited my test results, both for my PSA and testosterone level.
So I got the test results:
PSA: 0.09 up from 0.03
Testosterone: 71 up from 39
So some good news and bad news there. It is not a good thing that the PSA tripled. But it is just a single test. It would have to go up 3 times in a row to be a bad trend. But there is still anxiety that occurs. I would be lying if I said it didn’t bother me. Below is my PSA chart of my tests for this year. No test in July and August.
For the testosterone, it is climbing. Chemical castrate levels are less that 50 ng/dl. I am at least above that now. Minimum normal levels are 300 ng/dl. So I have a way to go.
So my next appointment is December. Funny, now I am anxious for that appointment.
People! I am done! Well at least with my primary cancer treatments. It was a long 18 months. I went through the ringer for sure. However I read what others have gone through for longer or have a stage 4 diagnosis and it puts it into perspective for me. As for me I am happy. Not 100% happy as I do have some lasting side effects that I have explained before. But my cancer control is great. Now I go on a 3 month cycle of PSA test to make sure it all worked. I also have to let the hormone therapy wear off which takes about 6 to 9 months as my testosterone comes back – hopefully to a normal range.
In July I go and get my port removed from my chest. It helped a lot on the chemo treatments and any time I was in the hospital, it was right there for the nurses to use. Easier than sticking needles in my arms or hands.
So now I move onward. Yes, this cancer diagnosis will be in the back of my brain forever. I know that as a G9 high risk guy that I may never be out of the woods, but at least for now, remission is the word of the day. Last PSA was 0.03. I am happy to have this behind me and for my wife who was my caretaker when I went through it all. It is tough on a spouse too. I did gain a wonderful dog who was my faithful companion during all the days I did not feel well or was laid up in bed. He curled by my side and comforted me. I also would worry about him instead of worrying about myself. It also made me get up and walk him. That always helps.
So if you have read this blog, and you have questions, or just say hi, send me an email. I will pay it forward for all the help I got at the start of this almost 3 years ago.
I know it has been awhile since my last update. Lot going on and I just forget to do it timely. But here is the latest…
I have been in physical therapy now for five weeks. It has been a grind. The therapist really cranks my arm to get my shoulder in a fuller range of motion, which I am not near yet. I have to ice for two to three hours after each session just to get the pain to calm down. The good news is that my elbow seems to be at the full range. The bad new is my hand has a lot of nerve damage. I have constant swelling and pain in my hand. My pinky and ring finger hurt all the time which would be a pinch of the ulnar nerve. And then my thumb, index and middle finger are numb and tingling which would be my radial nerve. To top that off, my hand has a dark red tint that sometimes has a bluish hue. My physical therapist is concerned that there is a vascular pinch also. I have an appointment with my orthopedic surgeon on Monday and another appointment with a neurologist at UCLA the following Monday just to be safe. All of this is a drag. I was expecting a long shoulder recovery but not hand trouble and pain.
Cancer Treatment Update
The end is near my friends. I only have two more Lupron shots and tow more months on Casodex. Then my primary treatments are over! Then I get to see if all of this worked. I then get PSA blood test every three months just to make sure the cancer doesn’t come back. At the same time, my testosterone gets a chance to come back. They say that is a 6 to 9 month process but I look forward to it.
This isn’t really related to my cancer journey but it is happening during my cancer treatment phase so it is worth mentioning. I just had rotator cuff surgery. That’s what i thought when i went into the hospital. What the doctor actually did was a few things:
Repair a high grade rotator cuff tear
Fix subacromial decompression
SLAP debridement and tear repair (The term SLAP stands for Superior Labrum Anterior and Posterior. In a SLAP injury, the top (superior) part of the labrum is injured.)
The rotator cuff tear is like this:
SLAP Tear is like this:
So I have a sling on 24/7 for the next six weeks! Ugh! I have to sleep in a recliner to for that time. I usually sleep on my sides but not now… I sleep in the sling and don’t move. I can’t do anything by myself. Marcy has to help me shower, dress, prep my food and drive. I type with one hand. It really sucks. I just add it all up to the suck fest of things I have been through in the last year and a half. Oh well.
Next Oncology Visit
Next Oncologist appointment is on Monday the 6th. Another Lupron shot. I was supposed to have another I.V. of Zometa then but I am going to ask to delay it one more month. Don’t want that now while I am in my sling. That medicine typically has a few days of bone pain that I just don’t need right now. I think you agree?
It has been awhile since I last posted. It was the holidays and I was trying to relax. We actually got away for the holidays. I am definitely not the travelling man I use to be. We have to make sure we have plenty of time for me to rest during the day and if I do something that is physically exerting, I will probably be out for the rest of the night and extra tired the next day. It is the way of life for now.
Now onto why I named my post “post chemo hair”. Prior to chemo, my hair was very straight and flat against my head and very grey in the back. I commented to my wife that my hair looked like Mike Pence, the incoming Vice President of the US. Now my hair is extremely wavy and darker – at least less grey. It is so different, I find myself touching my hair subconsciously. It doesn’t feel like my hair. My wife says it is like touching another man’s head!
So I thought I would add a picture to show you what I mean…
I did read something about your hair coming in different after chemo but I didn’t pay too much attention to it. Well… I am living it. For now I am following the two UCLA doctors on my two other issues with the reactive hypoglycemia and my radiation enteritis issues with my small bowels. So I am just trudging along.
On Monday Marcy and I went to UCLA to see Dr Run YU, an Endocrinologist. They got my A1C blood test from Quest Diagnostics and it was normal. At least I don’t have any diabetes problems hanging over my head. We had some discussions with the doctor about my low drops in my blood glucose that seems to be happening out of the blue. In some cases, my glucose has dipped as low as 38. That is dangerously low and I feel like I am going into coma land when that happens. A few other times I am in the low 50s and it is a bad feeling. I can barely make it to the fridge and grab some juice and proteins to snap out of it. I have to get this problem fixed. The doctor discussed two possibilities of these hypoglycemic episodes: #1) benign tumors in the pancreas that is causing the issues; #2) reactive hypoglycemia from food intake that my body is not in sync digesting and therefore releases too much insulin.
So the plan is to deal with the easiest of the two possible issues which is number 2. He wants me to try some new breakfast bars that digest very slowly and helps to reduce the symptoms I am having. He recommended bars by Extended Nutrition. He also wants me to follow a hypoglycemic diet where I don’t eat carbs alone but with proteins that help level the blood sugar over the day. I am to do this for the next 90 days and if no issues, then we found the problem. If it does continue then we will search for the problem related to #1 above.
I just got the bars today and I am starting on them tomorrow. I also started changing my diet per his guidance. One thing he told me not to do is eat a bowl of ice cream! What the hell! I love ice cream. This will be tough. Wish me luck!
Yes it does seem like I keep getting hit with weird things during this prostate cancer treatment journey. Well I guess it makes my blog more interesting for you readers. 🙂
I have detailed my journey this year, probably too much detail at times, but it is to help me and update my friends and family. So for today’s post I thought I would add a couple of things related to the cost of my prostate cancer this year.
As you can see above, total claims submitted to BlueShield this year is $262,776.03. My responsibility of that is $8,859.90. That is through today. My total out of pocket is supposed to be $2,500 but there are items, such as the DNA test my Medical Oncologist ordered that is not covered. What would I have done without insurance? My total cost since my diagnosis is over $300,000.
Pills Taken This Year:
I also thought I would add a picture of all the pills I have had to take this year.
Those little flat things in the picture are the Neulasta auto injectors that they stuck on my stomach after each chemo treatment. Some of the pills are taken to counteract the other pills or shots I get. The boxes are Zofran, which is anti-nausea pills. I keep one in my pocket at all times. With the radiation damage I have to my small bowels, I still get the occasional nausea. The pills help.
Last week I visited my Medical Oncologist for my monthly visit. We did the blood draws and and flushed my chest port. After that we talked about my care. I told him that I have had success with the bowel program that Dr Weiss at UCLA put me on so that is a plus. One item that Marcy brought up was my blood glucose levels either crashing or going really high randomly. As an example she explained, on the weekend we walked the dog and I told her I wasn’t feeling well and we stopped the walk short. She went to do something and I went to the kitchen. By the time she walked in, I was sitting down with my head hanging down, my mouth slightly open and I couldn’t move my legs. She asked if I was alright. I told her no and to get the blood glucose monitor. She did the test and I was in the low 50s. She got some orange juice for me and I ate some ham. It was really weird and if she wasn’t there, I really don’t know what would have happened as I couldn’t really think or move. So that has happened to me a few times over the last couple of months. The doctor took my A1C measurement in June and stated that it was normal. So he recommended I go see an Endocrinologist. He recommended one in Ventura that he knows but she is a one doctor office and is booked for 2 months. Plus they had me on hold for 25 minutes before I had to hang up. I started thinking, how good of service and I going to get there? So instead I called UCLA for and appointment. They have availability next week. So I think it was a good call.
So who knows what lurks inside causing this issue. It is a little scary so I guess I got to get it checked out.
After my visit with Dr Weiss at UCLA, he put me on a program to help heal the radiation damage. If I don’t get any constipation build up, then the area can heal. I am keeping things running through with high doses of laxatives. I have to have many more restroom breaks but it is not diarrhea. I have not had any constipation or abdominal pain or back pain in two weeks so that is why I said things are better. I have to stay on this program for a few more weeks. After that I can see if I back off if the same problem occurs. If so, I need to keep on the program.
So readers, I am just staying the course with my monthly Lupron shots and daily casodex. I am staying on my part time work schedule because of the fatigue. And of course, I still have my shoulder to deal with after the new year. So that is the update. I have my monthly meeting with my Medical Oncologist tomorrow. Thanks for reading and take care.