Monday, March 16, 2015
Spring Approaches… Treatment Continues…
It’s been just over 5 months since my last post… Things have been going well for the most part… I have settled into the current treatment.
It’s been about 6 months on the Enzalutatimde (Xtandi)… thankfully I finally got off the prednisone and the side effects of that.. now I just have to deal with the side effects of the Xtandi. For me, the side effects include some very vivid weird dreams, needing more sleep and waking with sore stiff hands and feet. I am also having much more intense “Hot Flashes”.
There isn’t much we can do about having dreams, although we are slowly figuring out things that cause the worst nightmares… I just have to avoid certain types of shows, thoughts and foods… I have noticed a big difference (good difference) over the past couple of months by keeping thoughts light and upbeat, eliminating late night eating and avoiding certain types of TV programs or movies.
The sore stiff hands and feet always get better quickly just by moving around… usually within just a few minutes they settle… I am very thankful for that.
The “Hot Flashes” are pretty intense at times and are pretty predictable… they come around eating times, right at bed time, and at least once though the night… The worst thing about the hot flashes is the cold that come right after… I can hardly wait for summer (although we have had a pretty mild late winter) so that I can get away from the freezing after every personal mini summer.
On the good side of all of this… My monthly blood work remains good. All these chemicals that have been infused and ingested haven’t caused too much damage to the parts of me that are ok. My PSA levels remain “steady”… they have been floating between 20.9 (first after starting Xtandi) and 29.9 (last level) During the past 5 months they have gone up and down by small amounts. MRI’s, CT Scans and X-rays show no significant changes over the past year (which is a good thing…mostly) They also show no significant signs of healing of the pelvic fracture last year.
So, for the time being, things are good and we will continue with treatment as it is.
Tomorrow I go in for hernia surgery… I’ve been waiting for years to get this done… At first, I had to put it off due to medications I was taking… Once that changed I started the process… I was promised it would be done and I would be healed by Christmas of last year… last week I got a phone call that some had cancelled their own surgery and I could have that time slot if I wanted it… if not now, it could be months before another opening came along… so tomorrow it its…
Life is good… Spring approaches…
Until next time….
Posted by John
on 03/16 at 02:43 PM
Thursday, October 09, 2014
Chemo Comes to an End…
It’s been a long time… a long time on chemo… a long time with daily pain… just a long time…
We saw the oncologist on Thursday, September 25th. We were both ready to continue on with chemo for a few more months…even though it was really getting to me.
The biggest problem I was having is not knowing from day to day what I would feel like or be able to do. When I started chemo, almost a year ago, it was pretty straight forward. I would have chemo… I would feel crappy for a week, then I would start to recuperate. The week that it was time to do chemo again, I would feel pretty good. It is no longer like that. I had better days right after chemo than 4 weeks later when it was time to have chemo again. The neuropathy in my feet is getting harder to deal with, and the pain in my pelvis is not settling down like it used to after a flare up.
Before we saw the oncologist, we talked with the nurse. She showed and told me about the results of the blood work. My PSA levels are up again… they are now at 25.2… up 2.8 from last time…which was up 3.8 from the time before… other than that, everything else seems to be good. We talked about the side effects and what could be done about them… Then we talked about continuing the chemo… We were fully prepared to go a maximum of 3 more rounds… When the doctor walked in, we were quite shocked when he said that he felt we had gotten all the good out of the chemo that we could…and that continuing would probably do more harm than good….
Although its not great news… it’s not as bad as it sounds… There are two other treatments available. I started the first of those two treatments the same day… 4 pills a day… We are praying that this treatment slows or stops the ca for a long while without the harsh side effects of the chemo… If not, it’s back to another infusion chemo...the last currently available treatment.
The other thing I have to do, at the same time as starting a new treatment, is to ween off of the prednisone which has been part of the previous two treatments. Because I have been on prednisone for almost 2 years, I have to slowly ween off of it. I am on a 30 day plan.
Since the pain in my hip has increased over the last few weeks, I went to see my family doc to adjust my pain meds… He has kindly been helping look after this up to this point… He had an X-ray done to check for any more fractures… There were none that he could see…but he did notice that the cancer has spread further in my pelvis… So we agreed on an increase in my pain meds for now and that if the pain continues to increase, or when it increases again, it will be time to move on to the Palliative Medical team who have a lot more experience with pain control…
It is now two weeks after starting my new medication and weening off of the prednisone. My pain has been controlled very well and everything else has been going quite well… at least up until last weekend.
I awoke Sunday to an uncomfortable abdomen… a hernia that was diagnosed last year has enlarged… it has caused a lot of discomfort… I’ll see a surgeon next week. Hopefully we can get it taken care of soon… I certainly don’t need this!
The last few days have also been quite difficult… the side effects of the new meds are basically the same as the side effects of coming off the prednisone… so it’s hard to tell what is causing the effects I am having… and for the last few nights I have been having quite intense dreams… last night to the point Cindy had to wake me because I was getting loud and restless. For the rest of last night I had a lot of trouble getting comfortable and I was extremely restless. I even got up and walked around for a while just to burn off some energy… I haven’t had this problem since adjusting my dexamethasone meds at chemo time…. and I’m not taking that any longer… I have to do some research to see what is causing this… especially if it continues…
Life Goes ON!
Until next time….
Posted by John
on 10/09 at 10:51 AM
Wednesday, June 18, 2014
Ten Rounds Completed…
It feels like 10 rounds in a fighting ring, but it’s 10 rounds of chemo that are completed… Number 10 was on June 6th… It went well, even better than I expected… more on that in a bit.
Since my last post, I have done 3 chemo treatments and a couple of Zometa infusions… All have gone well except for the last Zometa treatment… Since I have a Port (to make the infusions easier for myself and those giving it), it was expected to be an hour or less stop at the cancer centre. Unfortunately things didn’t go as planned. I was hooked up for the infusion...but before starting, the port has to be checked to make sure it is working properly. This time, although fluids were running in, blood could not be drawn back… We tried numerous things… Coughing, flapping my arms like a bird...almost everything but standing on my head… They could not draw blood! Because of that, we had to make sure the port was still properly in place… Off to Medical Imaging for X-rays to check positioning. While waiting for the results, an IV was started and my infusion done the regular way. When the results came it was good news. The port was still properly placed. The Port was then injected with a clot busting drug and we had to wait around to give it time to work… An hour and a half later and we had flow both ways… thankfully it was working again… So my one hour visit ended up taking almost 3 1/2 hours.
Chemo infusions 8 and 9 went well… With the usual tiredness, nausea and other not so fun side effects… Each time taking longer to get back on track. So long in fact that I was just feeling better two days prior to round ten… Because of that, and the other side effects that are starting to show themselves, the oncologist and I have decided on going 4 weeks between treatments from now on. Yes...ON…
My last visit with the oncologist was June 5th. At that time, although all my other blood work came back good, my PSA level was up again… They were at 17.8 this time...up about 3 points from last time. After all this time we were hoping to see either no movement or a decline… Instead they continue to climb slowly. The oncologist always reminds me that it’s ok… It’s time to worry when the doubling time is shorter… Although I understand that, I also understand that as long as they are climbing, it’s not optimum for me! We also discussed continuing the Docetaxel (Taxotere) treatments until my PSA levels take a big jump, or until I can no longer handle the treatments. We talked about the fact that treatment options are extremely limited now...and that continuing with Docetaxel is probably the best option for now. In the end I agreed with him and we opted to continue indefinitely. At our last visit we talked about 13 treatments...now we are talking indefinitely… :(
Friday, June 6th was my last treatment… I wasn’t sure whether my Port would work after the last Zometa treatment… Thankfully, without any problems whatsoever, we got good flow both ways. My first worry overcome! The infusion itself went well. We were in and out in a reasonable amount of time...and I was feeling pretty good considering how crappy I felt just a few days before.
I was feeling pretty good on Saturday, which is normal. As long as I don’t over do things I can generally function pretty well. I did a little work out in the yard which actually felt pretty good...and shut it down before wearing myself out.
Sunday I was feeling a little more tired...again, as usual. I decided to take it easy all day to avoid crashing… We had a very nice relaxed day...well, I did… I think Cindy worked more than she needed to...but she enjoyed her time out in the yard.
On Monday I was feeling pretty good again, so I opted to do a little more work on the job I started on Saturday… It went well, but I could feel myself wearing out, so I shut down before finishing up… I spent the rest of the day watching Netflix…
Tuesday was the beginning of the side effects kicking in… Nausea… exhaustion… diarrhea… bloating… Sweats and chills… The chills are always on the back of my neck...they get so bad at times that they give me a headache… Covering it up works except I get really hot and then sweat more...which causes more chills… All of these things are normal for me on the fourth day after chemo. It is also the day that my mouth gets tender and some things begin to taste TERRIBLE.
Since then, things have progressed as normal… I have been feeling good at times and not so good at times. The soreness in my mouth has settled down… my tastebuds seem to be coming back to normal… but I still get tired very quickly. The pain in my hip flairs on some days, but is really good on others. It hasn’t really been the same during any of the treatments… other than it flairs for sure on days 3-5 after treatment… then kind of comes and goes. If I over use my left leg, it will definitely flair then and usually the next day.
I started doing physiotherapy for my hip about 2 months ago. It didn’t take long to find that doing the prescribed exercises caused significant increase in pain. I had to stop for a few weeks just to get things to settle completely again. Since then, I have been trying to add some of the exercises into my daily routine… I can do very little without causing the flair in pain, so I continue to adjust what, when and how often I do the exercises. Hopefully I will get to a point where I can exercise my left leg/hip on a regular basis without the long term increase in pain… I could handle it if it was for a few hours or even one day… but when it goes on for a week or more, it seems pointless to do anything. Living in pain is not really living!!
It has taken me over a week to get this post completed… but I think it is mostly done now…
I have just over two weeks until the next chemo treatment… This week is my next Zometa infusion… I am hoping I have things figured out enough that I will feel better well before chemo… I will let you know (at least that is the plan) how I make out and what the oncologist has to say at our next meeting…
Until next time….
Posted by John
on 06/18 at 06:28 AM
Thursday, April 10, 2014
The Chemo Continues….
I have completed 7 rounds of Chemo with Docetaxel and Prednisone… the next one is in a few weeks… it should be next week, but because of Easter, and the fact that our kids are coming home, I’ve opted to take an extra week off…so the next round will be 4 weeks after the last instead of 3…
A lot of things have happened since my last post… to begin with, Cindy and I became grandparents a few days before my chemo treatment… We have an amazing grandson… It is such a blessing… something that didn’t look like was going to happen 8 years ago when I did my bike ride. We are so excited and have made a few trips to see the new member of our little family.
Since then I have had two rounds of chemo… Both have gone well, although the last round took a lot out of me for the first week… I think I’ve only been that tired a few times since my treatments began… but I’m sure it’s not the last time. I was originally scheduled for 10 rounds of chemo… the last time I saw the oncologist, he suggested that since I am tolerating the chemo so well, maybe I should do a total of 11-13 rounds… so I guess only time will tell how many I get through… the nice thing is that if it gets too rough, I can stop…
One other thing that has happened since my last post… I had my PICC line removed…and a Power Port inserted… The PICC dressings were starting to really irritate my arm… It was getting hard to find a place to put the new dressings without aggravating sores that had developed. The new port will stay with me for much longer… it allows for the current rounds of chemo plus any future chemo I may have to do. It was quite the procedure… Not painful, but uncomfortable at times… It has been healing nicely and has been used twice already. The worst part of it so far is that the healing process has caused some itching…and you’re not supposed to touch or rub the area for at least 6 weeks… Thankfully the itching is less today and should stop soon.
The last update for today… We went back up to Calgary a few weeks ago to see the orthopaedic specialist… He looked over everything again and said that in his opinion, I should just continue on as is. He is afraid that if he tries to replace the damaged hip joint he may find that the pelvic bone is too far gone and won’t hold the new joint. If that should happen, he would have to remove the hip joint altogether… leaving me without a left hip joint. That would make getting around even harder than it currently is… At least now I have a hip joint that is functioning… better that than no hip joint! It definitely wasn’t the news we were hoping for… but he is optimistic that the hip joint should be safe to use in limited amounts. He also said that if the pain increases in the coming months, then he would certainly be open to trying to repair/replace the joint.
So… that is the major news for now…
Until next time….
Posted by John
on 04/10 at 02:15 PM
Monday, February 10, 2014
Update on Pelvic Events….
It’s been quite the ride over the past month and a half…
The last time I posted, I was hoping to be home for Christmas. Well, thankfully, that happened. It was a messed up discharge from the hospital, but I was discharged. Because I was getting so many doctor referrals, no one really knew who was in charge of me. I went to see the radiation oncologist and he was unable to offer any help. I have had too much radiation already, so he refuses to do any more. He therefore referred me back to an orthopaedic surgeon. The surgeon was supposed to look over all my tests and let me know if he could offer any help. I’m not sure what really happened, but the day he was supposed to show up, he ended up being called away just before he was to come and see me… the next day, the on call orthopaedic surgeon came in and basically said he hadn’t really looked at my x-rays or scans, but from the reports he briefly read, there is nothing that he would be able to do for me… An hour later, he discharged me. I asked the nurse about pain meds and she said the surgeon said to just go back on what I was previously taking. Cindy came up at lunch time to visit, and found out I was going home. She was excited, as was I, but also wondering how we were going to make out… So, on Monday, December 23 I made my way home for Christmas.
As soon as I got home I called my family physician. He was surprised and a little upset that I was home… Mostly because he was never told I was being discharged and he was the doctor in charge. We talked about pain medication and he sent a prescription over to our pharmacy.
Monday night was pretty rough. Every time I got up to move… whether to bed, to the couch, or the washroom, the pain would increase incredibly… then I would have to try to sit or lay as still as possible for the next 10 or 15 minutes until the pain would settle again… I was taking pain meds every 4 hours… I had alarms set to remind me when to take my pain meds...but I was usually ready for them before the alarm went off.... but I didn’t want to miss any, because it would take hours to get back on track. Tuesday I spent most of the day in bed… I did get up for an hour or so and sat on the couch, but couldn’t stay comfortable… Christmas morning arrived and I got up and spent the morning on the couch. Cindy and I opened gifts and had breakfast (thankfully I had made it a few weeks in advance and it was waiting for us in the freezer!)… I stayed reasonably comfortable as long as I stayed put… It still took 10-15 minutes to settle after moving from place to place… BUT I WAS HOME!! We had a LOT of company Christmas Day as well… probably too much for me, as I got very uncomfortable and it took quite a while to get the pain to settle… I ended up taking extra pain meds to get the pain under control again. Cindy was running around trying to take care of me, taking care of the meals and preparing for our sons to come home… We were both pretty exhausted by the end of the day!
The next week went well… the pain stayed controlled for the most part. I was able to spend more time on the couch each day, but moving still made the pain flare up… Regardless, we had a fantastic Christmas with family and friends!!
New Years was quite unremarkable. We had been invited to a house party, but I was in NO shape to be going out… So we spent a nice evening at home with our son and daughter-in-law… we did manage to stay up to toast the New Year in… but that was about it…
I had received a cane, walker and wheelchair from the WCB just before Christmast… to help with me getting around. They come in very handy… I am able to get out for some fresh air with Cindy’s help. We manage to get out for a tea… or to pick up a few groceries… I can’t spend a lot of time out...but it sure feels good to get out of the house from time to time!!
On January 2nd, I had a visit with one of our oncologists. He asked about what the orthopaedic surgeon had said to me. I told him that he hadn’t offered any help...and really didn’t even explain what was going on… The oncologist pulled up the CT scan and showed Cindy and I some of the damage that had occurred. There are definite breaks in my pelvis… The oncologist asked us if there was any chance of radiation? I explained what we had been told about already having too much radiation… He then asked if I would be interested in going to Calgary to see and orthopaedic surgeon who specialized in bone metastasis… He figures I am still young and strong enough to handle a more aggressive approach to treatment and we should not accept “nothing” as an option without looking at every possible option.
A few weeks later we went to Calgary to see the specialist. He isn’t positive he can help...but he isn’t positive he can’t help… He suggested that I have an injection of anesthetic and steroid directly into my socket joint...in hopes that it would bring some relief from the pain. He is also going to look at my complete radiation history to see if there is any chance that my pelvis would stand up to surgery...as in a possible hip replacement…
I had the injection done on February 5th… It is quite the process… I didn’t get the almost instant relief that was expected… In fact, Wednesday night was quite bad… not so much pain, but discomfort and it seems i had an adrenaline rush… It took quite a while for me to settle down and get some sleep! Since then, each day has been a little better. There has been less pain… I am able to get around a little easier… Things seem to be better! Hopefully that is a good sign… in any case, I am to go back to the specialist in 5-6 weeks…
So...It has been quite an interesting number of weeks… We are waiting to see if anything can be done… we are waiting to see how chemo is going to go… oh ya… I am still doing chemo… Treatment #5 this coming Friday… YUP Valentine’s Day Chemo… Oh Well… this will be the half way point…
Until next time....
Posted by John
on 02/10 at 03:06 PM