Todd's Journey

Well, we expected it to happen. The side effects of the Steroids are now starting to pop up.

My face and mid section is now slightly looking a bit more bloated with water weight. It's not too bad at this point, but may get worse before it gets better.

My blood glucose has shot up to very high levels now, although I have been managing it fairly well at keeping it down with the use of insulin adjustments.

My sleep is slightly more challenging as the Steroids does cause some sleep disruption, I have moved to taking the Steroids first thing in the morning so that is kind of wears off by night time.

All of these side effects are temporary, and will return to normal following the end of the steroid treatment.

For the time being, I can live with the side effects as it's now showing a healing of my kidneys and my creatinine leves are coming down. That's the most important effect from the steroids.

But, I just couldn't avoid the negative effects of the Steroids, no matter how hard I tried. :o)

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.

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.

Hello All,

Had a bit of a rough day yesterday. My abdomin was quite painful all day, making it a bit of tough time. Low appetite, drowsy and just not feeling well at all.

It's very difficult to determine exactly WHAT is causing the pain. Many of my medications cause side effects that can create pain in my abdomin or stomach area. But it is also very possible (and most likely) that the immunotherapy is causing me these symptoms.

The immunotherapy continues to work in my body months after an immunotherapy session. Some of the symptoms I am having, which could be attributed to the immunotherapy, are stomach and abdominal pain, stomach upset, nausea, vomitting, skin rash and itching, headache, stuffed up sinuses, signifcant fatigue and muscle pain (leg).

The only way to stop the immunotherapy is to use high doses of steroids for a period of time, which actually shuts down the immunotherapy completely. Of course, the use of steroids will cause me more strife. Steroids will reek havoc on my blood sugars (they will go through the roof) and will probably cause me water weight gain (which would go away after I stop the steroids). The only advantage to doing so is possibly getting rid of some of these nasty side effects of immunotherapy.

For now, while the immunotherapy keeps doing it's thing, I will have to try and manage these symptoms as best I can. Given my increased creatinine levels, the medical oncologist is likely to stop the immunotherapy.

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.