Todd's Journey

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).

I met today with Dr. Bosse, who is another medical oncologist with the Ottawa Cancer center, to review my treatment plan going forward.

At this point my creatinine levels are still slowly climbing, therefore they cannot keep giving me immunotherapy as it risks further damaging my kidneys.

What appears to be happening with me is the immunotherapy has kicked started my own immune system to attack cancer cells, but it is also attacking my kidneys (immunotherapy can lead to attacks on other organs). The only option when this happens is to settle down the immune system so it stops attacking my kidneys or other organs.

The only way to stop the immune system is with steroids.

I will start with very, very high doses of steroids for 5 days, then for the next 40 days will slowly ween off the steroids all together.

The difficulty I will have with the steroids are maintaining my blood glucose (the steroids will completely throw them out of whack and they will go very high - I will manage this with insulin), water weight gain (the weight gain will be moderate, but temporary. Once the steroids have stopped, the weight will return to normal), I will probably have trouble sleeping, and I may have arm and leg pain.

Although being on the steroids will not be a great experience, it will at least, hopefully, calm down my immune system, and my creatinine will start to come back to normal.

I will be checking my creatinine levels once a week for the next 6 weeks.

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.

Hi All,

Bad news today. Despite changing out the ureteral stents last Thursday, it appears my creatinine levels are even higher than before. They are now coming in at 285 umol/L. The previous reading was 196 umol/L.

In some cases it may take some time for the creatinine to go down, however they are likely going to postpone my immunotherapy again until they can get the creatinine levels moving in the right direction.

Is a setback for sure. We can hope that they find the source of the creatinine level jump, since it appears that drainage from my kidney to my bladder is not obstructed.

It is possible that my kidney has been acutely damaged (with the insertion of neph tubes, and now stents) or from the immunotherapy itself. It could mean I have permanent kidney damage that is not repairable.

The next step the Doctors will look at is:

1. Removing the stents completely and allowing the natural flow from my kidney into my bladder. (The stent would cause a slower drain as it's a smaller tube inserted in my ureter) Removing the stent may allow for better draining of the kidney.

2. They may try giving me a small dose of steroid to counter a bit of the effect of immunotherapy to see if it results in less damage to my kidney and lower creatinine levels.

3. They may take me off of immunotherapy altogether, and switch me to a different (chemo like) medication.

Will keep you all posted.

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.

I have pretty much recovered from my immunotherapy reaction over the weekend. The small dose steroids I was given seemed to help a lot. I have my appetite back, am holding down my food, no fever, and no chills or rigors.

We'll have to see what, if anything, the Oncologist will do with my next immuno session. They may just add the small dose steroids to help prevent recurrence of the reaction.

Will keep you posted.