Todd's Journey

Hi All,

The results of my last chest CT scan came in. If you can recall, during my December 6th scan, they identified that most of the nodules (bladder cancer) that had mestasticized to my lungs had significantly reduced in size or were almost undetectable at that point.

The results of my recent scan show that all of those remaining nodules had resolved (meaning they could not be seen anymore). There were no new nodules in the lungs or in relation to the lymph nodes.

This report in essences is showing a clear scan. No new cancer, no signs of cancer return, or cancer progression. Although not cancer free, that's the closest you can come to a cancer free diagnosis.

I am awaiting the results of the abdominal scan which should be coming in any day now.

Overall good news.

On another note, Jamie and I have had to cancel our planned trip to Las Vegas simply due to the current leg issues I am having. The trip was planned for less than 6 weeks from now, and it is not likely my leg will be in good enough shape at that time for a 5 day visit to Las Vegas. Fortunately, all our trip was refundable, and our aim now is to get ourselves on our Hawaii cruise in April of 2025.

I will update you as soon as I get the abdominal scan results.

Hi All,

If yo yu have been following my journey, you will have learned by now that when you get Cancer, you enter a war with one of the worst diseases known. Cancer doesn't care about you, it cares about itself.

When you face Cancer head on, you truly go to war against it. And as in any war, to win you have to keep fighting the battles of war. Just when you've beaten one battle, another comes along. Some of those battles aren't directly cancer related, but they are collateral damage caused by your fight against the cancer.

Case in point. The biggest battle for me so far has been beating back the cancer to the point of regression, and in some cases almost making the cancer undetectable. That was a huge win in this war. However, to win that battle, I had to put my body through 5 surgeries, 2 nephrostomy tubes, one radiation treatment, 4 rounds of chemotherapy, and two rounds of immunotherapy. From all that, I suffered some collateral damage to other parts of my body.

My kidneys took a significant beating through all of this. They had to seriously work overtime at clearing out toxins, and the cancer had blocked my ureters from allowing my kidneys to drain that they became inflamed and damaged. The immunotherapy treatments were also found to have been damaging my kidneys. With the steroid treatment I am now undergoing, my kidneys are returning to normal function again. Slowly but surely.

The other major collateral damage I suffered during the battle with cancer, was a weakening/stiffening of certain muscle groups in my body.

For the better part of nine months, I have not been able to be very active for very long. This was due to the sheer amount of time I was either bed ridden for not able to actively move around (with nephrostomy tubes, catheters, recovery from surgery, etc.) While I tried to keep my muscles moving as much as I could, it was not easy.

It seems that one of the large muscles (the piriformis) muscle (basically your glute muscle) has stiffened and tightened. The muscle then pushes on my sciatica nerve which is causing me great pain in my left leg at times, making it difficult to move or get appropriate exercise to help the muscle.

To fix this problem, I will have to do regular, stretching and strengthening exercises on that muscle, however given the pain right now, it is very difficult.

The doctors are now trying to develop a good pain management plan in order to allow me to get through the days with minimal pain, and allow me to do more active movements.

Obviously beating back the cancer to the point of remission was the biggest battle won so far. These collateral damage battles will get fixed too. It just takes time, patience, and "less pain".

Sciatica seems to be (fingers crossed) slowly healing. I am having a bit of an easier time moving around now without the aid of a cane or walker. Still have aches and pains from the sciatica, but much more bearable. I am using Dilaudid to keep ahead of any flare-up pain.

Due to the increase in creatinine, they have moved me up from 40mg of Presnidone (steroid) to 75mg. This is a normal course of action when trying to supress immunotherapy since at times when the steroid dose may be too low, the immunotherapy kicks back in. The rise in this dose has caused me difficulty in managing my blood glucose levels. Not a big deal though, as I can somewhat manage it through insulin dose changes. It's just not an exacting science, so sometimes the dose works, and other times it takes more.

I had my cancer CT scans yesterday on my chest and abdomin. We can expect the results of the scan to be available next week sometime. Hopefully the scans will be all clear with no further signs of cancer or cancer spread. I will keep you posted on the results.

I always try to remember what Dr. Morash (my urology oncologist) once told me. He said I have to remember that my bladder, ureters, kidneys, and all that area have been through a lot in the last nine months. It takes time for all of that to heal and get better. So I take every positive as just that. Positive. The number of negatives gets smaller and smaller. Good progress.

When I began the steroid treatment to help my kidneys out, my creatinine level was 298. The normal range for creatinine is between 62 and 102. With age it sometimes can be a bit higher. Clearly a reading of 298 is high, and indicates kidney impairment. After starting the steroid treatment, my first creatinine check (after 10 days) had dropped to 222. A drop of 76 points. Today, my creatinine level is at 177. Another drop of 45 points. They have reduced my steroid dose for the last 3 weeks, each going down by about 50 mg. In reality, with the lower steroid dose, it would probably result in a bit of a lower drop in creatinine. BUT the reality is, the trend shows my creatinine clearly trying to return to close to normal level. All good news. I suspect we will keep up with the Steroid treatment for now.

This morning I went for a scheduled ultrasound as part of the Oncologists investigation into the rise in my creatinine levels.

One of the possible reasons for the rise in creatinine is diminished kidney function due to obstructions in my ureters blocking the flow of urine from my kidney into my bladder. Or my bladder is not draining/emptying fully.

The ultrasound will be able to show how all that is functionning.

The results showed that my bladder was full when I started, and after having gone to the washroom, it was almost completely empty. This means my bladder is functionning properly and draining fully.

The results also showed that my kidneys were normal size, and not inflammed meaning there is no back up of fluid into the kidney.

No other abnormalities were seen or detected during this scan.

This result will help confirm that my creatinine leves are rising most likely due to the immunotherapy itself, which they are now trying to stop by putting me on steroid treatment.

Not out of the woods yet, until my creatinine gets back to normal, but definitely progress being made.

Hello All,

I am on day 2 of my steroid treatment to try and shut down the overactive immune system I now have from the immunotherapy.

While I have not yet gained the water weight (oh, it will come... lol) I have found myself with little to no pain since starting the therapy.

This leads me to believe that the abdominal pains I was suffering through were probably a result of the immunotherapy, and now that my immune system is settling down a bit, the pain has seemingly gone away.

Other symptoms of the immunotherapy also seem to be weening down, or gone.

The gold marker for me will be to see if my creatinine levels come down now as well. We will have those test results next Tuesday (the 27th).

Bloodwork was completed earlier this morning, and it appears that my creatinine levels went up AGAIN.

It is now becoming more and more clear that my ureters, bladder and kidney draining is NOT the source of my continued creatinine increases. So in some small sense, that's a good thing.

The bad news is, the increase in creatinine is likely being caused from the immunotherapy sessions. Immunotherapy continues working in your body for months after a session. The only way to stop the immunotherapy from continuing to work is to administer high doses of steroids.

The administration of steroids brings on it's own set of challenges, especially in terms of water weight gain, and significantly elevated blood glucose levels. However, these are temporary until the end of the steriod treatment.

I do not know what the next option will be from the oncologists, but it is likely to stop the immunotherapy. At that point they may look at maintenance chemotherapy, which is lower dose chemo, spread out over a longer period of time, to help keep the cancer from returning.

Will keep you posted.

Hello all,

I was supposed to be in immunotherapy today, but the Medical Oncologist wants me to go in and have a couple bags of saline fluid put in me to help clear out my kidneys.

I will then have a new creatinine test tomorrow to see if it's gone down at all.

I am also scheduled now for an ultrasound on February 26th so they can see how my kidneys are flowing to the bladder and if the kidneys are inflammed at all.

Will keep you posted.