Todd's Journey

The story of my cancer journey

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Oncology update - review of CT scans

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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.

Update on Surgery for Stent Replacement

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Stent replacement surgery went well yesterday. The Surgeon replaced both of my stent with newer, larger ones to help with the flow of urine from my kidney to bladder. We are hoping that the stents, being larger, will help to bring down my creatinine levels so I can restart my immunotherapy.

This is the first step in determining why my creatinine levels have gone up. There are two other reasons it may be rising. One is the antibiotic I am on can also increase creatinine, but it's a low possibility. The second is the immunotherapy itself.

The reason I had neph tubes originally and stents now is because my cancer had been obstructing the flow of urine from the kidney to the bladder which means it was backing up into the kidney. Before I had the stents put in and the neph tubes taken out, my creatinine was at 140.

Three days after the stents were put in, my creatinine level dropped to 139 (so relatively stable). On the same day that reading was taken, I had my first immunotherapy session. After that session, my creatinine level jumped to 171. After my second immunotherapy session, it jumped to 191. They postponed my third immunotherapy session. My creatine did rise a bit after that, but to only 196.

So as you can see, if the stents don't reduce my creatinine, and there is no obstruction issue with my ureters, it may very well be the immunotherapy sessions that are increasing my creatinine.

Nonetheless, my urology oncologist may consider completely removing the stents if it's found that there is no obstruction that is causing my kidneys from functionning normally.

Will keep you all posted, and thanks again for all the support and emails you keep sending me. You cannot know how much is has made a difference in my success at beating the cancer.

Update on upcoming surgery.

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Had a very good conversation this afternoon with Dr. Morash, who is my Urological Oncologist and Primary lead in my Cancer treatment journey.

He believes there are a few possibilities as to why my creatinine levels are going up. One may be the stents, two it may be the antibiotic I am taking called Trimethoprim, or three it may be the immunotherapy itself that is causing the rise.

The simplest thing to do right now is to replace the stents and see if that improves drainage from the kidney to the bladder, ultimately reducing my creatinine levels.

If the stent replacement does not work, we will try removing the Trimethoprim and see if that reduces the creatinine levels.

If that doesn't work, then we may have to look at going back to nephrostomy tubes. Which could end up being a permanent requirement. But that decision is still a little ways down the road.

I am hopeful we won't have to go back to the nephrostomy tubes, as it severely affects my quality of life and makes travel something of the past for me.

We will see after Thursday if the creatinine is coming down.

Will keep you posted.

More surgery.

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My immunotherapy scheduled for Friday this week had to be postponed as my creatinine levels are way up again. They believe this may be related to my stents not functionning properly, so they are sending me back into the OR next Thursday (the 8th) to remove and replace the stents. Hopefully this will work to bring down my creatinine levels or we may have no option but to go back to the neph tubes. That would definitely not be my preference as it's a huge impediment to my quality of life, and really restricts what I can and cannot do.

Will keep you posted.

Some tough days

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Hey everyone. I am still adjusting to the ureteral stents that are in place, causing the frequent urination issues. I still get fatigued but not as quickly as before. I have had some abdominal pain due to the stents and constipation caused by a few of my medications.

The immunotherapy session I had went well (other than the infusion reaction I got), so the oncologists were happy about that. The added aggravation that I live with now is feeling cold much more often, and brief bouts of shivering.

I have also been having some mental struggles the last few days. The feeling of guilt I have watching people (especially Jamie) have to do so much for me, and because I am still weak (from the chemo - can last up to six months) I cannot help him much. Things we used to do together, he has to now do himself. So I am feeling a real level of guilt.

The Doctors keep reminding me that I am still early in this Journey. I just finished a very successful chemo treatment, a month and a half ago. They infused me with a significant amount of chemo. The effects of the chemo (fatigue, weakness, etc) can carry on for up to six months following the end of chemo. Right now I am still dealing with the effects of the chemo.

They also reminded me that I just started immunotherapy that has it's own set of challenges. And that will take a while for me to get used to.

I know none of this is my fault, and I know that Jamie helps me because he loves me and is in this journey with me, but it doesn't erase the guilt I feel some days. It's been a tough few days.

I am sure it will pass. Like my Doctors say, it takes time.

Upcoming Surgical Procedure - Neph tubes

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Hello All,

As you probably know, I am to undergo another procedure on January 2nd to determine if my neph tubes can be removed.

Speaking with Dr. Morash today (my urological oncologist) the plan is to enter the bladder to take a good look of the lay of the land. Previously the cancer tumors in my bladder were blocking (or partially blocking) the ureters which did not allow the urine from my kidney to drain into my bladder.

The three previous resections of my bladder attempted to remove as much of the tumor as possible, but they were not able to get at any tumor that was in my ureter. In fact, during those surgeries they were not able to even see the entrance of the ureter from within my bladder.

The hope now is that the chemotherapy, which was highly successful at reducing the tumor and node sizes in my lungs and elsewhere, will have reduced the size of any potential tumor that was in, or around, the ureter entry into the bladder.

The plan is to see if they can identify (see) the entrances to my left and right ureter, and assess if the flow of urine from my kidney is entering my bladder. They can do this using dye to watch the flow.

If the flow appears good, they may put in some stents (temporarily) to ensure the flow remains ok, which would allow me to remove the nephrostomy tubes.

It is also possible that the flow would not be great, in which case the stent would help, but if not enough, the neph tube would have to remain in place.

The goal of the procedure on Tuesday is to try and remove the neph tubes (or at least one of them) to allow me a bit more freedom and convenience in terms of quality of life. They may be able to do this with stents, or if the flow is very good, they may not have to place stents at all.

We won't know what the outcome of my neph tubes are until after the procedure on Tuesday. If I am lucky, I will wake up from surgery with no tubes, or at least one less tube. I will update everyone on Wednesday or Thursday next week.

Wish me luck!!!