Todd's Journey

Just a quick update to let everyone know that Todd is home. He is comfortable and sleeping while being cared for by the ever attentive Nurse Greta.

Jamie

It was little more than a year ago when Todd and I found out that he had cancer. This was the start of a long, undulating roller coaster ride filled with ups and downs, highs and lows, both physical and mental. Throughout this journey, Todd has had to fight every step of the way. He has overcome countless setbacks and obstacles, and he has done so with the strength and tenacity that we all love him for.

Unfortunately we have been given the news that Todd's journey is coming to an end. There is no more that can be done. For those of you who are sharing Todd's journey and fighting your own battle, do not despair. Everyone's journey is different; while Todd's may be ending sooner than we had hoped, that does not mean yours will.

Todd is currently at the Winchester District Memorial Hospital being cared for. We are working with the hospital to get Todd comfortable enough to return home where he can cuddle his babies (Greta, Boba and Brand) and we can spend more time together.

We will be making arrangements for friends and family to visit Todd at home, and will be reaching out with details soon.

Thank you everyone for your thoughts, prayers and support now and throughout this journey.

Jamie

We have reached a pivotal moment in my cancer journey. Today, my oncologist confirmed that I am currently cancer free. Although there may still be microscopic traces of cancer in my body, they are not visible or detectable at all. My scans are the equivallent to someone who does not have cancer.

The bigger part of the news is how exceptionally well I responded to the chemotherapy and immunotherapy treatments. For someone to be diagnosed with high-grade, muscle evasive bladder cancer that has metasticized to their lungs, to achieve cancer free status in five months is remarkable. Only 5% of bladder cancer patients have done this.

Now this does not mean that my cancer will not be back. But it does up the chances that it may stay away. As mentioned in a previous post, if I can go two years of cancer free status, the likelihood it will return lowers. That will be my next goal and milestone. (well, every scan from this point on will be a milestone)

So what's next? Well, I will continue to be monitored for cancer signs going forward, and may at some point go back on some form of immunotherapy maintenance. They are not sure of this option yet, as they continue to work on lowering my creatinine levels. I also have a follow up with a nephrologist (kidney doctor) just so they can have a quick look at my kidneys and treat any damage that may have been caused by the immunotherapy.

My oncologist also ordered an MRI be done on my lumbar spine area to get a better look at what might be going on with my leg pain and stiffness. Once they have figured that out, they will be able to treat it appropriately. At this point they just aren't sure what is going on with it.

Finally, my urological oncologist believes it's time now to take out my ureteral stents. He will make arrangements for that somewhere toward the end of April. With the stents out, the frequency of urination (which keeps me up at night) should go away, and I should be back to normal urinary frequency.

If not for the leg issue, and the stents in place, I would pretty much be back to myself pre-cancer. (with the exception of the weight gain and puffy face due to the steroids, and the immunotherapy) The weight should go back to normal for me, but it's going to take some time for sure.

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.

Spoke this morning with my medical oncologist who was very pleased with the decrease in creatinine levels yesterday.

We are now back on track to slowly reducing the steroid doses again. This time we won't reduce the dose by as much, as as quickly. We will reduce the dose weekly by just 10 mg. This should help keep us on track without cutting the steroids back too much, too quickly.

So, all in all, back on the original treatment plan.

Had the weekly creatinine level check done today, and it has once again dropped. Seems the increase in steroid dose last week has now put me back on track to lowering my creatinine level to normal values. Not quite there, but getting closer.

The other good news with the blood work is my hemoglobin, which has been low (at times very low) for the past 9 months is almost back up into the normal range. That will help with any fatigue issues I may have had in the past.

That's the update. Will let you all know when we get the cancer scan results back. Should be any day now.

I had my weekly creatinine level check today. Unfortunately it did go up (instead of down) but only by 12 points. So while the increase was not terribly significant, it has gone in the wrong direction this week.

It is quite possible (because it is not an exact science) that my current lower dose of steroids might not be sufficiently suppressing my immune system, which would allow the immunotherapy to continue to damage my kidneys a bit. It is also possible the increase in creatinine is being caused by something else (medication, dehyrdration, etc.)

However, the Oncologists believe it's likely the tapering off of the steroids has made the current dose too low to continue to shut down the immunotherapy. They will move me back up a bit on steroids, and retest in a week. If my creatinine goes down, it was likely a dosing issue with the steroids.

So, not a terrible creatinine report, but we need to get back on track now.

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.