You have heard me talk about "collateral" damage a person with cancer takes on during some chemotherapy and immunotherapy treatment. These are known risks prior to starting cancer treatment. Fortunately a majority do not experience significant side effects that require the cessation of treatment, however a small number of people (including me) do experience some unfortunate side effects. I refer to those as collateral damage, because the risk of not doing any treatment is far greater than potential side effects that may arise.
However, the oncologist do look at what the side effects are doing and decide on whether to continue with treatment.
In my case, as you already know, the immunotherapy was clearly causing damage to my kidneys. While that clearly is negative news, there is some positive you can take from it.
I spoke today to my medical oncologist. He was very, very pleased with my scan results. He said they could not have been any better. He also explained to me that my own immune system became very, very active from the immunotherapy. This is primarily why the kidney issues arose. So, they are trying to shut down the immunotherapy effects to allow my kidneys to heal again. While I was unable to get out this week for my bloodwork, he did look at my last bloodwork, and said my creatinine level was not alarming to him, and in fact was close to where I should be for a man who is my age, and has bladder cancer. He confirmed that I am close to being at baseline with my creatinine levels so will continue to slowly get me off the steriods.
This brings me to my leg issue. The oncologist also suggested that it may be the immunotherapy that has/is causing the leg pain. It is a known risk that immunotherapy (in a very small percentage of people) will experience issues with one or more of your invertable discs (the cushion between each vertabra) causing it become inflammed and bulge, or squeeze against the sciatica nerve.
Just as I would have probably felt the pain from that kind of event, they had started me on very high dose steroids to stop the immunotherapy. With the high dose of steroids I was on, I would have most likely not felt any pain at that point, as the steroids would have masked it.
As I went along lowering the steroid dose weekly, eventually the steroid effect would not help, and I started to feel the pain in my leg quite significantly.
It does stand to reason since my pain is most evident in the morning (when the steroids from the day before have worn off) and the pain returns after dinner as the steroids begin to wear off.
After dinner, I now again need help bathing, getting around, walking, sitting, getting dressed as the pain increases all night.
Thankfully we will be trying an extended release hydromorphine pain killer that will provide a more constant release of hydromorphine over a 24 hour period, rather than just trying every 6 hours to lower the pain. This may also help with the extreme drowsiness I experience from the hydromorphine.
So yes, it's been a return to the days of last September, October and November where my leg had atrophied and I was not able to move around as much. The difference this time is the pain is significantly higher than last year. (Probably due to pressure on the sciatica)
So what's the silver lining in all of this? Well, according to my oncologist, when immunotherapy treatment has shown to cause my own immune system to become so active (which it did) I have a much higher chance that the cancer will remain dormant for a longer period of time (and in rare cases) not come back.
That IS a silver lining. And they are working on my leg issue. Just playing the wait game for an MRI so they can confirm what is going on, and then treat it effectively.
On a final note, in the last week I have been told of four friends or friend's relatives who have been diagnosed with or affected by cancer.
As a cancer victim myself, I have always been drawn to statistics on survival rate, recurrence rates, etc. I now always tell my friends now that what's important when looking at those stats is to not focus on the negative outings (which are often quite higher) than the positive outcomes.
For example, I was diagosed with Stage 4, high grade, muscle invasive, metasticized bladder cancer. The 5 year survival rate is 39%. That means that 61% of people in my position will not survive more than 5 years without treatment. Instead of focusing on the 61%, I look at the 39% I could very well be a part of. The same goes for all cancer stats. Just because you are likely to be in the larger percentage group, doesn't mean you will be. You could very well be one of those people who do beat this dreaded disease. Those people exist. And are part of those very statistics you are looking at. :o)