Week 4. Sutent update

Three more doses. Three more doses. Three more doses. Three more doses. 

But who’s counting?

I haven’t been doing much, because I feel so tired. On Saturday, both kids were going out for Halloween stuff, and I thought, “Great!  Let’s go to a movie!” By about 5, though, it was clear I wasn’t going anywhere.  Reil even took over the door duties while I lay on the couch. 

I can still manage about one outing a day. This evening, Reil took me to the pharmacy to pick up a prescription. I live a rock star life, let me tell you. 

Tomorrow’s excursion will be to the DMV, for my son’s permit test. I’m more nervous about this, because we can’t put it off if I’m not feeling well. Just gotta do it. (And then keep my fingers crossed for him)

My feet hurt.  And then I walk funny to compensate and that makes my legs wonky which makes walking even more difficult. I’ve decided it is just better to keep off them as much as possible.  I got through 2 episodes of PBS’s Indian Summers and one Home Fires today. 

My skin remains a sickly yellow. The doctors aren’t yelling about my liver function lab results, so I’m just not worrying about it. But I look forward to being pink again. 

New this week is the sticky film on my teeth. And that’s not from the Halloween candy!  I brush well, but it’s still there. Gross. Not sure if it is a side effect or if the Biotene just can’t do the job. I’ll switch back to Colgate next weekend, and that should make things better or at least feel cleaner. 

Week 4 seems a lot harder this cycle, but maybe that’s because I’m not distracted by the bright lights of Las Vegas like I was last cycle. 

Three more doses. I can do this. 

Week 3 – half way done.

Still doing pretty well here, but having to slow down a bit.

I finally went in to my primary care doctor about the sinus infection that I’ve had for at least a month now. And now I’m on my 3rd round of antibiotics since starting Sutent in August. But, 2 days in, and I feel so much clearer in my head, my throat and in my chest. So yay.

My feet are hurting. The calluses are getting really thick on the left foot. I pumice them in the shower, and I make sure my feet are well lubed up, but the calluses persist, and painfully so. I’m definitely letting my family do more for me, while I sit on the sofa like a princess. Not ALL the time, but more often than last week or the week before. Next week will probably be spent mostly on my ass. Thank goodness for Netflix.

Last week was pretty rough with fatigue. I went swimming on Tuesday, and it wiped me out. 10 short laps swum in 20+ minutes (yeah, I WAS barely moving, thank you), and I was toast for the next couple of days. However, this weekend has been easier, and while I’m not up and running around, I can at least keep my eyes open for most of the day.

Twelve more days. I’ve got this.

Start of week 2

Now that I’m firmly into the second week of my Sutent cycle, the side effects are becoming a little more pronounced. 

Fatigue is hitting hard. Climbing stairs, walking for sustained periods or distances (a quarter mile), mopping the floor – all will leave me winded and tired. I’ve had to nap most of the last four afternoons, just to be semi alert later on. 

Mornings are good, though. If you want me coherent, come see me around 10 am. 

My skin has taken on a yellow tone. I’ll get labs done tomorrow, but last cycle they didn’t show anything off, and when I went on break, my complexion went back to its normal pasty white. 

In the next few days I’ll probably need to stop using Colgate toothpaste, and will have to switch to Biotene because my mouth and tongue are getting too sensitive. I don’t plan to eat any Mexican or Indian or other spicy food again until the break. (Cue sad face)

My feet are hurting enough to be a nuisance, but not enough to slow me down too much (I’m out of breath or energy first).  The blisters/calluses are growing, though, and I’m finding it more comfortable to wear shoes than go barefoot in the house. 

Overall, I remain in very good spirits.  I’m doing things in shorter bursts, but am still getting out and about.   So that’s all good. 

More in a few days. 

Week 1 Side Effects 

I’m trying to keep track of when side effects show up during the cycle of Sutent.  I’m now on day 6 of 28.  

Earlier this week I noticed a slight burning sensation in my palms and bottoms of my feet, the beginning of hand foot syndrome.  Today it is much more noticeable, but it still hasn’t become a problem. I figure that by this time next week, I’ll be using urea cream a few times a day to help soothe it. 

I’m getting more fatigued. This afternoon I had no choice but to take a nap, and although I’m awake right now, I don’t have much energy.  Good thing I picked around the house earlier.  I can spend the rest of the day not feeling guilty about reading. 

I’ve started taking my daily pills a little earlier, because I’ve found that taking sutent at bedtime lead me to stay up late, waiting for my tummy to settle down. Now my stomach still has some issues, but it’s not keeping me up well past my bedtime.  Today I had my first bit of diarrhea, too. 

Also, after not menstruating  for much of the last year, (not at all between February and August), I’ve had my period begin a few days after starting this and the last cycle, with much heavier flow than normal.   I’m not thrilled by this, but if my periods follow the 6 week cycle of Stent, then that’s nice and regular without being as often as a normal cycle. 

Overall, I’m feeling good. My spirits remain high, as they’ve been since getting off of Inlyta, the devil drug. 

Mid October – Starting a new cycle

On Friday night, after a 14 day break, I started up my second full cycle of Sutent. I am LOVING this medicine, and I really hope that it is doing its job, and continues to do it for a long time.

Yes, the side effects are harder to deal with than my first med, Votrient, and if every day were like my 4th week of being on Sutent, then it would be more difficult to deal with than my second med, Inlyta. But I get the break, and that makes all the difference in the world – in dealing with both the physical side effects and, more so, the psychological effects.

The last two weeks were awesome. My last dose of the cycle was on a Thursday night, and by Monday, my feet and whole body felt back to normal. I could feel the side effects lessening before then, too. I had energy. I was fully mobile (though out of shape, so not doing any hiking yet). I could eat spicy food – Indian! Mexican! Yum! But most of all, I felt normal. I felt hopeful. I was looking forward to life. And, really, the emotional uptick wasn’t just the last two weeks, but the whole cycle. Compare that to being on Inlyta, where I often had thoughts of “maybe dying would be easier than this.”

So yes, I’m a fan.

That being said, there are side effects. Two doses in, and I am a little more tired. This afternoon, I am noticing a bit of the burning sensation in my hands and my feet. It’s really only at the “Yes, I feel you there, you sneaky little side effect” stage, and no where close to the “Dammit, why do you vex me and keep me from walking???” stage. I’ll get to that latter stage eventually (probably in two and a half weeks or so), but everything is manageable now. And later on, I’ll be able to count down the days until I get to take a break, so even if I’m wincing in pain as I walk, I know it’ll be over soon.

My oncologist and I had a chat earlier in the week. Among the questions he asked was “How is your weight? Have you lost very much?” Big sigh from me. I WISH! Instead, I gained. Thanks body. I appreciate that.

My goal for this cycle is to swim at least once a week, preferably twice a week. I can do that even when I can’t walk, and hopefully, the continuing exercise will make my fitness level jump up enough to be able to hike a bit during the next break. (And by bit, I mean at all.) Hopefully by then, too, the unending heat will have stopped and fall will have finally come to the bay area. That’ll make it even more pleasant.

Late August Update

I see that it’s been a while, so let me catch you up. 

Remember my last post, where I talked about how the side effects of Sutent weren’t too bad?  Less than 24 hours after I wrote that I ended up at the emergency room after the advice nurse told me to come in. I had a low grade fever (~100.2) and chills, apparently a UTI.  The doctor gave me some antibiotics to take home with me and stressed that if my temperature went up again, or if I wasn’t feeling better, that I needed to come back in. 

The next day, more fever and chills, so back to the ER. Poor Reil – he and the kids had tickets to a ball game, and I pretty much forced him to leave me there. My friend, Inta, met us there and watched over me as I lay on a bench in the waiting room, looking every bit the hobo. A little later Yvonne and Maureen  showed up, too, and all 3 took good care of me. 

I was taken in, and copious amounts of blood were taken. Eventually they moved me to the observation part of the ER, and the next morning they made the decision to admit me.  My white blood cell count was very low, and they worried about a kidney infection or c-diff, both of which were ruled out. 

I spent most of my three days in the hospital sleeping while they gave me iv antibiotics.  After coming home, I remained mostly couch bound while I  got my strength back. 

My oncologist and I decided that we both wanted to try to make Sutent work, so last Friday I started a new cycle at 3/4 dose. I’m feeling good so far, but believe  me when I say I’m paying much closer attention to how my body is reacting. 

Catching up on Sutent

I’ve been on Sutent for almost two weeks now, and so far, it’s going ok. The best change is that I don’t feel as wiped out as I did on Inlyta. I mean, I’ve actually cleaned the litter box – voluntarily. Both of them! And today, Molly and I spent the day shopping in and walking around San Francisco, which would have been unheard of a month or two ago. We only walked a mile (plus the shopping), and I came home exhausted, but I couldn’t have done it while on the other medication.

I am noticing side effects cropping up. I’ve got hand-foot syndrome, which shows up on me as redness and a sensation of burning on my palms and the soles of my feet. It’s been manageable, but it is becoming more uncomfortable. I will probably contact my doctors to see if they have any tricks. The worst part of the hand-foot syndrome is that using my sewing machine seems to make it worse. Probably the vibrations of the machine.

I’m also experiencing changes in my taste buds. It started with spicy foods (and tooth paste) being painful. Now I’ve found that I can’t taste salt, and sweet things taste off. Those are hard. No more french fries or ice cream for me. Even water tastes metallic. Kind of gross.

And finally, diarrhea. So much fun, but not too bad yet.

All of these side effects are ones I’ve had before, and it is nice to have some ideas of how to deal with them. I’m also bracing myself for the side effects to get worse. There’s a reason why Sutent is prescribed in cycles of 4 weeks on, 2 weeks off. I hope that it won’t get too bad or that if it does get bad, it’s only towards the end of the 4 weeks.

For now, I’m just thrilled that I have enough energy to do things with friends and family. And that I don’t feel like I have a fog in my head. I kind of feel human again!

New CT scan results and decisions 

I’ve stuck my body in a few diagnostic machines lately. On Friday, I had an MRI on my head to see if there was anything notable that would explain the increasing dizziness I’ve been experiencing.   The results?  All normal. It’s probably just a side effect from Inlyta, my cancer med.  (Which I stopped on Monday, leading to a much clearer, less dizzy head.)

Yesterday I had a CT scan to determine how things are going inside me.  I got the results today. They’re not what I’d hoped for, but aren’t terrible, either. 

There is some progression of disease, but it is limited and small (the greatest growth was 4mm).  So the Inlyta is working, but not very well. It is slowing things down, but not completely. My oncologist said that his first response was that I need to change meds, but as he looked a little closer, he thought that I could stay on it for another 2 months and re-evaluate after a scan at that time. 

Or I can move on to Sutent, which is a first line medicine that is similar to Votrient, the first drug I was on. It’s been around longer, but has more side effects than Votrient. 

So the question now is do I stick with the evil I know, with limited efficacy or do I choose the evil I don’t know?

When he was talking to me, I thought I’d probably stick with Inlyta to squeeze the last bit of usefulness from it (because he tells me once I go off, I can’t go back on it. I’ll try to get clarification on why later).  Then I took a trip to TJ Manx, and realized that Damn, it’s nice to feel good. And I haven’t really felt that at any time I’ve been taking Inlyta. 

So now I’m leaning towards Sutent. I told my doc that I’d let him know my decision by Friday, but I think it’s probably already made.  

It makes a difference 

At kids circle this past weekend, Molly was the only tween in attendance, so she got one on one time with one of the counselors. They walked to Starbucks, and spent an hour or so just chatting and drinking refreshers. The counselor reported back to us that Molly agreed that our trip to Colorado was our best trip ever, and one of the reasons was my high energy level and ability to do activities with the family. 

I completely agree. 

And it’s nice to get that validation that taking my medication vacation was worth it, beyond just my comfort.  Hopefully those good memories will get us through the next few weeks until I take another break. (I’ve decided that will be a few days during the week between the kids’ camps in August.  I want to be able to spend a day playing at the beach with them.)

Today, though, has been quite painful. My arms and legs and hips ache.  I’m tired and cranky. And again, frustrated by the constant weighing of the costs and benefits of taking the cancer medication. Sometimes I wish we really knew what the numbers would be with and without the meds. It might make it easier for me to see the benefits of the drug. 

Or it might make it easier to say the costs aren’t worth it. 

I’d really rather spend what time I have left being able to enjoy life with Reil and the kids, rather than wincing and napping my way through it. 

Plus, it’d be so much more fun to blog about activities than whine about side effects. 

Coming back

Sleep isn’t going to come soon. I’ve taken 4 doses of my cancer medicine since we came home on Friday night, and it’s already causing pain. My bones and joints ache, especially my elbows and my thighs. I just took a Norco, so hopefully there will be some relief soon. I just wish I’d thought of it sooner. Pain management is all about cutting it off before it gets bad. 

It is maddening to have to be back on these pills again. The stupid little rust colored tablets.  I felt so alive and comfortable and almost energetic while on vacation last week. I couldn’t move very well because of neuropathy and dizziness, but there wasn’t any pain, so it was just the issue of working through my unsteadiness. (No small feat, but again, not painful.)

I am once again feeling the anger that was building up in me before our vacation. But that’s not how I want to live. I want to be light and easy.   It doesn’t come naturally with this medicine, though. 

Reil and the kids drove a couple of hours north today to meet up with my mom. As I was kissing them goodbye, I had a sudden fearful flash of “What if there’s an accident, and they all die?” which was just as quickly replaced with a calm: at least I’d be able to stop taking the meds without feeling any guilt about how much it would shorten my life. 

That tradeoff sucks. I have to choose between living well or living a little longer.  We don’t know how much longer (Statistically, it’s about a year longer, but who among us is a statistic?), which makes the choice that much more murky.

For now, though, since my family is all safe and alive, I’ll focus on ways to cope.  With the pain, with the fatigue, with my lessening abilities. My first step will be marking a date in my calendar when I can take another vacation – from the kidney cancer treatment.