Todd's Journey

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.

Hi All,

Had a follow up appointment with my medical oncologist today to review how the Steroid treatment is going.

My creatinine did drop by 76 points in the past 10 days which is excellent news. Right now they are weening me off the Steroids slowly, but need to be carefully monitoring my creatinine to ensure that the steroid dose continues to be effective. It is possible if the steroid dose is too low, or weened off to fast, the creatinine levels will go up again.

So for now they are going to continue to monitor me through weekly bloodwork. Hopefully the creatinine will continue to come down.

There are really only two outstanding issues that I am trying to deal with right now.

First, my left thigh and buttocks is quite sore, aches frequently and in some cases I am unable to put any pressure on my leg at all without feeling pain. This was most likely caused by the awkward position they had my legs in for my last stent replacement surgery. It is either muscle strain or sciatica issues. Either way, it will take some time to heal - possibly weeks to a few months.

Secondly, by the end of the day (mostly after dinner) I move into this phase where I am often unsteady on my feet, dizzy and lightheaded. I have many medications that cause this. It's difficult in the evenings, as Jamie has to help me sometimes move through the house as it can hit me at any time. My hope is that once we get back on track with my creatinine, and perhaps if they remove the ureteral stents, they may be able to take me off of some of these current medications.

But all in all, I can live with those two small issues right now as I am at least moving in the right direction.

If you have been following my journey, you will know that since starting immunotherapy in January, the level of creatinine (a waste product that is usually expelled through urine) in my blood has been creeping up.

Increases in creatinine indicate your kidneys are not working to their full potential. Higher and higher increases in creatinine could indicate heading toward kidney failure.

The doctors have pretty much ruled out any obstructions in my ureters, or drainage issues with my bladder.

They are now working on stopping my immune system from being in overdrive, and hoping that by slowing down the immune system, my kidneys will function better and get back to a normal level soon.

I have been on Steroid treatment for the past week now, and just had a creatinine test this morning. My creatinine levels have dropped by almost 76 points. This is a significant drop, which means the steroids are working, and my kidney is healing and performing better right now.

I will keep on the Steroid treatments for another month or so, and continue to hope my creatinine levels decrease.

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.