Todd's Journey

The story of my cancer journey

Back to needing help again

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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)

Update on Steroid Therapy

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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).

Immunotherapy on hold

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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.

Immunotherapy side effects

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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.

More surgery.

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My immunotherapy scheduled for Friday this week had to be postponed as my creatinine levels are way up again. They believe this may be related to my stents not functionning properly, so they are sending me back into the OR next Thursday (the 8th) to remove and replace the stents. Hopefully this will work to bring down my creatinine levels or we may have no option but to go back to the neph tubes. That would definitely not be my preference as it's a huge impediment to my quality of life, and really restricts what I can and cannot do.

Will keep you posted.

Update on Immunotherapy reaction

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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.

Another rough few days

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Well, it's been almost 6 months since Jamie and I have had to go to Emergency on a weekend (or day for that matter) but that streak came to a halt on Saturday. I appear to have been having another reaction to my immunotherapy session on Friday. All afternoon Friday, I was feeling cold, fatigued and had abdominal pain. I had no appetite, and was fairly nauseous.

This continued through the night. Saturday morning I woke up with more intense symptoms, plus I had a fever. We went to Emergency shortly after lunch where they put me on strong antibiotics as a precaution, and ran a whole slew of tests. Most of my bloodwork came back fairly normal, and they ruled out septis.

The ER doctors contacted Oncology at the Ottawa General Hospital who reviewed the symptoms and blood work and concluded that I was having a reaction to the last immunotherapy session.

He explained that the immunotherapy can mimik an infection, and even cause a fever. All of my symptoms were signs of an infection, so it was imperative of me to go into ER. Once they had determined it was a reaction, they gave me some steroids to take for a few days, which made me feel much better.

I am pretty much back to normal today, but our streak of staying out of ER on the weekends finally came to an end.

Todd's Journey - Chapter 16

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Here is Chapter 16 of my cancer Jouney.

Had my first immunotherapy session today. Almost made it through the whole session, but unfortunately had a reaction with 8 minutes to go. I began shaking significantly for almost 20 minutes. They managed to get that under control by administering large doses of Benadryl, and a steroid. The shaking did subside and i did finish the remainder of my immunotherapy session with no further incident.

The ER doctor and Pharmacist at the Hospital said the the shaking can be expeccted when my immune system is in 'overdrive' from the therapy drug. They will give me the benadryl and steroid prior to the immuno drug next session in hopes to prevent the shaking from occurring again.

Unfortunately the Benadryl dosing and steroid made me very tired and weak again. I had to leave the hospital in a wheelchair, and when I got home, my legs collapsed just upon entering the house. Jamie helped support me to the floor and then we waiting there for about 5 minutes until I had enough strength in my legs to get and up make it to the couch. My strength returned in the afternoon.

As for the bladder update, I am still urinating very frequently but the time in between needing to urinate is slowly getting longer. The pain in urination is also getting better, with less stinging and burning now. I suspect things are getting better, but it sure is a slow process. The good news is I am peeing on my own, and my urine is quite clear.

That's the update for now. Take care everyone. Talk to you again soon, and I'll try and do a video blog update soon.

First the bad news - in my stupidity, and feeling a bit better, I tried going out to drive my lawn tractor with the snow blower on it on Tuesday to clear the snow from the lane. I didn't really think much about it being too labour intensive, but apparently just the lifting of my blower, and the pushing of the pedals, and maybe the position I sat in for an hour, was enough to pull one of abdominal muscles.

I have to try and remember that my muscles have not been actively used for almost 7 months now, so the easiest of tasks may be a bit of a strain for them. Anyhow, I will just have to rest more and let the abdominal muscle heal up again.

As for my next steps in my cancer treatment, I will begin immunotherapy the first week of January. Bladder cancer cells have a specific protein marker on them that hides the fact they are cancer cells. This marker fools my own immune system into thinking the cancer cells are normal cells. What the immunotherapy will do is remove that specific protein marker on the cancer cells allowing my immune system to hopefully start attacking those cells, therefore keeping the cancer at bay (stop it from growing or spreading). Immunotherapy, if successful, can continue to work for a very long time.

The immunotherapy will be administered by intraveneous drip every two weeks for as long as the immunotherapy keeps working. After several years, if the immunotherapy is still working, they may take me off of it, and simply follow up with scans every so often.

The immunotherapy is likely to cause me fatigue again, but not nearly as significant as the chemotherapy did. It is not expected to make me nauseaus or sick to my stomach.

I will have to have CT scans done every three months now to ensure the cancer isn't returning or growing again.

If, for some reason, the immunotherapy does not work out, or I don't tolerate the immunotherapy drug very well, there are other medication options they can try.

It definetly is no fun knowing I have to go every two weeks for treatment for a long time to come, but I need to do it to keep my cancer under control, and to allow me to live a nice, as close to normal, life again.