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.

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.  

I’ll have what he’s having

I’m back at the hospital today, in the infusion center getting topped up with IV fluids. 

This week my lab results showed that I was quite dehydrated. I was having stomach cramps when I ate or drank anything, and feeling very weak. On Wednesday, after feeling like I was going to pass out, Reil basically carried me up to the oncology department  and plopped me in a chair of the infusion center. I was out of it. The nurse got an IV in me, and within about 30 minutes I had perked up enough to feel present. 

Since then, I’ve been drinking gatorade  and pedaling, and similar drinks to keep me hydrated. Today’s visit should bring me just that much more relief. 

I’ve also spent the past few days not taking my cancer medication.  I’ll start up again tonight, but oh what a relief it has been. My stomach feels better. I’m not having diarrhea.  I still feel weak and tired, but I was able to get 6 loads of laundry done today. So that’s something. 

Needless to say, I’m not really a fan of Inlyta. The side effects have been really shitty and not fun at all. If it weren’t working, it’d almost be a relief. 

But it is working so far. So, ugh. 

Today, within a span of about 5 minutes, two friends in the DC area sent me links to the Washington Post about a new treatment for kidney cancer that’s had pretty good results (The article is here). I’d heard about nivolumab before – one of the guys in a kidney cancer forum I’m on has been taking this treatment and it is working very well for him.   Still, it looks like the response rate is only about 20%, so I’d be hesitant to stop something that is working for something that might not. However, when this drug stops working, it’s nice to know there are other options waiting in the wings. Preferably ones with fewer side effects. 

Now I’m going to take the last few minutes of this I drip to nap a little

Sixty to zero

I started this morning with an easy school drop off followed by breakfast with friends. Headed home, and spent an hour or so doing guided meditation and the new stretching exercises that the physical therapist assigned me, while listening to some healing music that was assigned by the woman who leads me, long distance, in meditation. At noon, I was showered, refreshed, relaxed and ready for a quick trip to the pharmacy and then a support group.

Sounds like I’m taking great care of myself, right?

By 1:00, I was a total mess.

I order almost all of my meds through the Kaiser website, and have them shipped to my home. Very efficient and easy. However, both the Votrient. and now the Inlyta. had to be picked up at the pharmacy. After waiting in line for almost half an hour. with my body becoming more and more sore and weak, I was told that my prescriptions weren’t ready (Though the website said they’d be ready yesterday), that two probably weren’t even there yet, but if they were, the woman who dealt with incoming orders was on break, and wouldn’t be back for an hour.

I wasnt able to handle it well. I’d just used up my very last “spoon” of energy standing in line, and with it went all ability to cope. Lots of tears were shed. An f-bomb was dropped.  Only one.

Eventually, I was able to get two of the three scripts I’d come for, and got the promise that they’d call me when the 3rd one was ready.  A volunteer wheelchaired me out to my car, where I rested for a while before heading home to sleep for a while.

It was a humiliating experience. I couldn’t stop crying. I could barely move. I was in pain, uncomfortable, exhausted. And I couldn’t do anything about it. Ultimately, I felt my confidence in my abilities even more shaken.

I usually try to end all my posts on an upbeat note, but I’m having difficulty getting to that space. I really just want to curl up, away from the world, for a while.

However, one possibly hopeful note is this – one of the meds is for hypothyroidism, which my doc said I’m experiencing. Once the med starts working, I might have a bit more energy than I’ve had, and that would be greatly appreciated.

Palliative Care updates

It’s been a busy couple of weeks, with spring break, visits from my husband’s siblings, staycationing in the Bay Area, and a quick trip up to Humboldt to see my parents and meet with a doctor up there.

Cancer-wise, I think the most important part was meeting with Dr. Fratkin, a palliative care doctor up north.   My mom heard about his practice, ResolutionCare, and encouraged me to check him out.   We had a terrific meeting at my mother’s house – Dr Fratkin, Reil, my mom, my stepfather, and I. Should have asked my dad to come, too, but cancer brain.  We began by introducing ourselves.  Fratkin was interested in finding out who I am, not the cancer, but me.  (All props to my oncologist, Dr. Shek, but that’s not where we go.)  He asked the others about me, and a bit about them and our relationships.

We talked about what I hope to get from working with him, and I explained how I felt about the palliative care crew (a nurse and a social worker) that I’ve been working with at Kaiser.  They’re nice.  They’re caring, but they seem timid, like they, too are trying to get the lay of the land.  I think they might be new at this, or it might just be a personality trait thing – they don’t want to offend me.  What I’m looking for is someone to whom I can turn, who knows about this process, and can help guide me through treatments, side effects, and all the decisions I’m going to have to make.  I want a rock.  I think I may have found one.

He also noted that there seem to be two kinds of people, those who look at life and accept the realities, and those who look at the life only as they want it to be.  Obviously, I’m more in the former category, but noting the differences explains some of the issues I’ve had in my social life recently.

The plan now is that I’ll send him my doctor’s and the palliative care team’s contact info, and he’ll make contact so that he can work directly with them (and maybe help guide the Kaiser palliative care team, too!)  We plan to do video conferencing calls every few weeks.  He wants me to take my marijuana tincture twice a day in small amounts (I’m not going to argue), and to discuss going off cholesterol and maybe diabetes meds.  “You’re not going to die from high cholesterol.”  Just to keep things simple, or simpler.

ResolutionCare had a crowdfunding campaign recently.  While they raised the money they were hoping to, every little bit counts.  If you’d like to learn more (and maybe donate), visit the ResolutionCare website.

In other news, I had a CT scan this morning, and should find out the results later this week.  This scan was to determine whether the Inlyta is working.  (That means no growth or shrinkage.)  It was a pretty rough visit for me.  Usually CT scans are easy, but I was having a lot of abdominal distress, and just all around felt like crap.  I was very glad my friend, Cynthia, was there to drive me home.

Still having lots of side effects – diarrhea, fatigue, some pain (though not too much), and the burning in my mouth with spicy foods or even toothpaste.  I changed to Biotene, and that helps, although it tastes terrible.  The walker has been a godsend.  We were able to go to Alcatraz, and Reil and Molly pushed me around the cells.  We even did an Ikea run and a side trip to Bed Bath & Beyond.  And I made it through all of that!

A few thoughts

I tried to write a more coherent post, but this is what came out – I almost think I should place everything in bullet points.

It’s been almost a week back on the Inlyta, and over all it isn’t too bad.  It isn’t too great, either, but let’s focus on the positives first.  Compared to the last round, I’ve done much better – only a little pain that was easily managed with Norco; while I’m taking naps daily, the fatigue isn’t quite as wearing as it had been; I’ve been able to be creative and even get outside a bit.  So, overall, not too bad.

At the same time, though, I feel like I’m more fragile.  I have to plan out each day so that I have the energy to do what I want or need to do.  If I overextend myself, I’ll pay the price.  I recently read about the spoons theory, which has really resonated with me recently, though luckily a shower won’t cost me 1/12th of my daily energy.

During the week, I met with a palliative care team at Kaiser.  They got me hooked up with the Norco.  It’s possible that ibuprofen would do the trick, but because I only have one kidney, and that one isn’t functioning at full capacity, I’m not supposed to use ibuprofen.  So, opioids it is.  And I’m thankful for them.

I am also looking for a support group for either metastatic cancer or for terminally ill patients. I feel like there are things I want to discuss that aren’t really relevant to a general cancer group where a large portion of the people can easily expect to survive.

And, since I’ve been able to get a surprising amount of sewing done, another thing on my mind is how to finish up some of these projects. I’m thinking that maybe I’ll try to get some quilting friends together to help me layer the tops that are finished. And I really need to find a quilter who can take care of the large top that I won’t be able to handle. Not difficult to find, but something I put off because of procrastination and not wanting to deal with the expense.

Also, I really “need” to hire a sewing team to execute some of ideas. I could get SO much done if people were sewing for me while I was in bed, resting. I’d be like Matisse, who was blind or nearly so, when he made many of his cut outs, using helpers to do the work.

I’m still struggling to get used to the way life is right now. Part of me gets a little depressed when I think that it may not get better than this. But, as Rob said today, what’s the alternative? I guess this is what they call the new normal. Ugh.

Back on the horse again?

My doctor finally got back in touch with me.  (Usually he’s much more prompt.)  He really encouraged me to give Inlyta another chance to see if the side effects will settle down, this time on a smaller dose.  I told him OK, but with two caveats:

  1. We start with a set time frame – if this doesn’t work within X weeks (I’m thinking 3), then we drop it and move on to the next therapy.
  2. I get palliative care to help with the pain.  The marijuana does help a bit, but not completely.  And if it’s any indication – before Inlyta, I was using it once or twice a week.  On Inlyta, it was as much as 4 or 5 times a day.

There’s a third caveat, but that has more to do with my friends and community, and not at all to do with my doctor.  I know this line of treatment will knock me out and wear me out, and leave me unable to do much.  So, for that, I’m going to need support, and lots of it.  I know I’ll be tired, but I’m also going to need to see people and talk to them.  So, texts and visits would be greatly appreciated.  Phone calls, too, though I’m not sure what my phone skills will be.  If you want to come by, but aren’t sure about whether I can do it, please just ask.  I will tell you yes or no, and I will mean whatever I say.  And yes, you may wear me out a bit, but I’ll have plenty of time to nap;  your company will help more than you might expect.

On the up side of it all, I feel really good right now.  No pain beyond what I normally had, being a 46 year old out of shape person with cancer.  My energy levels are much higher, though I still feel a bit of fatigue, as if I were getting over a bad cold or the flu.  So, that’s good.

Also on the up side, I bought some fabric today.  I needed a little fabric for the binding of one of the quilts I recently found again, and when I walked into the store, I was blown away by all the pretties.  So, I blew most of the last bit of money that was on my state disability card on a few cuts.  In away, I think this is a good sign for my mental health.  I don’t NEED this fabric (no, really, I don’t!  shhhh!), and purchasing it means I’m looking to the future, and being able to use it.  I’m seeing a future!


Inlyta sucks

The past 10 days, since I started taking Inlyta, have been some of the roughest in my life.  I’ve had increasing amounts of fatigue, so much that I figure I have about 3 hours a day where I manage at about 50% of normal, and the rest of the time is spent lying on my bed quietly, or sleeping.  Earlier this week, my hips began bothering me more than normal and a finger joint began to be very painful.  This weekend, the pain has entered every point of my body in the hours after taking my pill.

And so, I’ve decided to stop taking Inlyta.  I’ve sent an email to my doctor, and am waiting for a reply from him, but I’m not taking tonight’s pill, and won’t continue after today.

At my last appointment, he said that we have lots of other options, so I’m sure I’ll have another drug to start on soon.  And hopefully it’ll be one that I can truly live with.

Update: 2/5/15

I met with my oncologist today for the results of my scan. The news isn’t great – in most areas there was growth. In some cases, it was only a mm or so, but in a few it was upwards of 10mm (basically doubling in size).

So, as of today, I am off the pazopanib and starting a new drug, Inlyta (axitinib). Keep your fingers crossed.

I’m having a hard time processing this. My doctor comforted me with “There are lots of drugs to try.” But in my mind I’m just picturing a bleak and short future. And there’s the problem – I’m picturing the future and it messes with my cool.

So, please, keep me in your thoughts and send lots of get your groove back vibes. And if you can wish away cancer, too, that’d be excellent.