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.

We are in to the 2nd day of significant sciatica of my left leg. It is so bad at times, I am unable to put any pressure on my leg at all, and if I do, my leg will buckle and tumble me to the floor.

This leg issue as been around for about 4 weeks, but in the last two days has gotten progressively worse.

I have a progress CT scan on Tuesday for my cancer check, so the Doctors are going to take a look to see if anything is going on down there.

One theory they are currently looking at is related to the steroids. If my sciatica issue occurred during my stent replacement surgery (4 weeks ago) the start of the steroids (high dose) may have been masking the pain. As they continue to lower my steroid dose, it is possible the pain is much more noticeable now. It does seem like a workable theory as the pain has been increasing slowly as the steroids have been reduced.

Hopefully the sciatica issue will get better with some more time (can take up to 6 to 8 weeks) otherwise they will have to look at other options like surgical intervention to heal my sciatica.

For now they want me to use my Dilaudid (pain killer) as often as I need just so I can try and be somewhat able to move around a bit and help the sciatica.

Unfortunately for me, it's another one of the two steps forward, one step back.

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.

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.

One of the issues I have experienced on my cancer journey has not received a lot of attention on this blog, but with some upcoming optical appointments, I thought I give you an update on it.

Back in July of last year, much prior to starting cancer treatment, I suffered an optical nerve damage event due to inflammation of the nerve probably caused by the cancer. It caused the peripheral vision in my left eye to be impaired by a darker, cloudy area to the lower left of my eye.

The damage to the optical nerve is likely permanent, as optical nerve repair is not possible.

I have an upcoming optical appointment with an optical nerve damage specialist at the Ottawa Eye Institute. Not sure if they can do anything to repair it, or at least improve my vision from what it is today.

My vision issue is likely to be collateral damage from the cancer. And all part of the battle. It is what it is. I keep my fingers crossed that they can do anything to help my left eye vision.

Will keep you posted.