Tuesday, March 27, 2012

Life with Afinitor - and other medical odysseys

Today I took the last pill of my first first four-week cycle of Afinitor.  I will start the second cycle tomorrow, and at the end of that four weeks, I'll have scans to see what it's doing to the cancer.

So far the side effects from the new drug have been milder than what I experienced on Sutent.  I have some mouth sensitivity, but it's really minor.  Nausea has popped up several times; usually nibbling on something helps to get rid of it though one evening I did end up taking Compazine so that I could just go to sleep.  I was given prescriptions for Compazine for night use and Zofran for day use.  I'm happy that I haven't needed to take them more so far, but I won't try to be a hero if I feel really sick.  It's just not worth it.

I also have experienced some rash on one lower leg; it will itch like crazy for a bit each day.  Good lotions have helped a lot; the itch can be annoying at times but it hasn't been severe at all.  All in all, not a bad experience so far.  A little voice in my head worries that the lack of side effects could be indicative of Afinitor not working for me.  The rational voice in my head is louder, however, and reminds me that some people experience very few side effects while still having a great response, and that I'm still in early days on this treatment.

The main effect for me has been fatigue.  It's not a feeling of sleepiness per se, but a lack of will to get up and move to get things done.  Afinitor may not be wholly or even partly to blame however, because my hemoglobin and associated counts have been declining over the past several weeks.  My oncology team is watching them closely; Dr. Rini told me that if they get too low, I might need a blood transfusion.  I find myself at the end of the day kind of collapsing, knowing that I need to do chores, or balance the checkbook, or even write on my blog, but I often don't feel like doing anything that requires effort.  Instead I just play around on Facebook or read funny tweets to Jim.  Lovely pastimes, but it feels like being in a bit of a rut.

Someone recently observed that he has noticed a difference in my spirit since I got the news that Sutent had failed.  According to him, I seemed like I'd kind of had the wind knocked out of me, and that I didn't express the same positive attitude that I usually display to people.  I think he's right.  Even though I don't consciously think about it much, I know that failing on one drug and having to move to another is scary.  I definitely felt my mortality more concretely, even though I'm certainly nowhere near being terminal.  But the feeling of being out of control of something going on in my body, something that could kill me, is really scary.  Sometimes I think that my positive attitude and the way I try to downplay my cancer in my interactions with people around me are a way of maintaining a sense of denial about the possibility of dying in the near future.  The thing is, my tumor load is really pretty small, and the tumors themselves don't affect me physically.  If it wasn't for side effects of treatment, I wouldn't "feel" like a cancer patient at all.  I don't like thinking that I might leave this life before doing more of the things I want to do.  And when I think about how young my girls are, I really get upset.

It's been a crazy past couple of months for other reasons, too.  In late January Jim slipped on a patch of ice in our driveway and fell, landing on his side.  He was sore, but seemed to get better over the next several days.  About a week later he went for some dental work for which he needed to be given nitrous oxide, for longer than he's usually had it.  The next day, he started experiencing severe hip pain.  He saw someone at our regular doctor's office, who ordered an xray.  Before he got the results of that, he felt worse, so I took him to the emergency room where they did another xray and said nothing appeared to be broken.  Since then, he's had constant pain, running down the backs of both legs.  He did some online research and thought that he might have had a reaction to the nitrous oxide, but this doesn't appear to be the case.  Our doctor referred him to a rheumatologist, who gave him a week long dose of steroids.  The first couple of days were great; he felt much better.  But he had to taper down the dose after that and his pain increased as the drug level decreased.  Last week she ordered an MRI for him... finally... for this week.  However, he was in so much pain that he called her and she gave him another prescription for steroids.  On Saturday he started feeling numbness in his leg and foot, which understandably scared him, so back to the emergency room we went.  That turned out to be another waste of time (and co-pay).  We were told that the hospital we were at doesn't staff the MRI on the weekends; if a case is emergent they call techs in to do the testing.  But Jim didn't meet the qualifications for emergent, despite his pain level being at around a 9 and keeping him from doing anything other than laying or sitting, trying to find positions that eased the pain.  The hospitalist who works with our doctors said he could be admitted overnight but the only thing they could do for him was try to manage his pain, so he would likely be discharged on Sunday morning.  This wasn't going to really help the total picture, so we opted to go home, with a prescription for Percocet, which has helped take the edge off Jim's pain but by no means has allowed him to resume daily activities.  The folks themselves at the ER were really wonderful though.  They felt that Jim's issue is likely orthopedic - perhaps a nerve impingement - which is the same idea his rheumatologist expressed last week.

His MRI was scheduled for this morning, so now we're waiting for results.  He had a weeks' long wait to see the rheumatologist despite having a referral from his primary doc, and so he and I have both been beyond concerned about how long it might take to see an orthopedist.  Yesterday morning I sent an email to both our primary doc and the rheum doc, letting them know what happened over the weekend.  This constant pain is depressing for Jim, as is not being able to contribute to our daily activities and having me do things he normally does.  I expressed that in the email, and asked the docs to PLEASE try to get him in with the right doctor as soon as possible based on the MRI results.  Our primary doc replied within two minutes!  He said that he would facilitate getting Jim in to see a back specialist within a day or two as long as the MRI results indicated that was the right direction.  So if you are the praying type, please send some prayers, otherwise put out some positive vibes that the MRI shows something fixable so that Jim can get back to being himself.  It breaks my heart and the girls' hearts to see him suffer.

Interestingly, my energy level has been better over the past several days.  It could be because my body realizes that I need to "step up to the plate" right now, or maybe my blood levels are improving.  I hope it's the latter, and will find out tomorrow when I see my onc team for my regular check-in.

Now, this drama isn't enough for our family... not at all.  On Sunday I was letting our dogs out the back door into the yard.  As Scooter trotted away, I noticed that his, er, behind-type area didn't look right.  A closer look when he came back in led me to think that he has an infected anal gland.  I took him to the vet yesterday afternoon to confirm this.  The vet took him into the back room for a rectal exam and I have to say, that dog is really quite a wonderful little guy.  He came back to Caroline and me as happy as ever, and when the vet returned to the room, Scooter was wildly happy to see him again.  If you had your butt poked at, would you be enthusiastically greeting the poke-er?  I wouldn't!  Anyhow, our vet's news was not what I wanted to hear.  He aspirated a bit of the lump and found that it was solid, so he's calling it a mass.  Not a cyst, not just a swollen gland.  He told us that these masses are not uncommon and are almost always benign, but that the mass definitely needs to be removed.  So on Friday Scooter goes under the knife, and will probably have to wear a Cone of Shame for a few days.  I am not even allowing myself to entertain the possibility of this tumor not being benign.  I have had three dogs with cancer in the past 20 years and really had hoped that was my limit.  I do think this will be fine, but will feel much better when I receive a good pathology report from the vet.  The girls are surprisingly okay about the surgery, mostly because he won't have to stay at the vet overnight, and also because a dog wearing a CoS is kind of funny in a sad sort of way.  I'm sure Scooter will receive a lot of TLC this weekend, especially from his BFF Rebecca.

For my next post I need to think up something funny/positive/not cancer-related to write about!

Trial time

In my last dispatch I wrote about my decision to join a clinical trial now that Sutent is no longer keeping the 'spots' as my kids call them from growing.  Oh, so much has happened since those lazy days of mid February!

February 20 was spent at Cleveland Clinic going from building to building for various appointments.  I started the day with blood work, taken in the chemo lab so that they could access my chest port rather than try to find a vein.  The port was a bit sluggish in flushing and filling blood tubes; this dismayed me as I've kept the port in my chest just so it can be used for these things.  The nurse got it going, however, and after taking a number of vials, sent me on my way.  I met with the research nurse, then hiked over to another building to have an EKG and get an injection in preparation for a bone scan.  The EKG tech was not the friendliest of people.  I had been given a note to give her that explained that I needed to be at rest for ten minutes prior to the EKG, and that I was to be given the printouts to take back to the cancer center.  As she led me back to the procedure room, the tech read the note and rolled her eyes at the ten-minute wait... apparently this extra ten minutes was going to screw up her day.  She had me lie down on the exam table and left me to rest a few minutes.  I didn't mind because I was very sleepy, not having had any coffee yet due to having to be fasting for some of my blood tests.  When the tech returned she was a bit less gruff but then told me I was too tense so "Try to relax!"  Because it's just that easy when you're being barked at.  Right.  Finally she decided she had good readings and I was released to my next stop.

In contrast to my EKG experience, the tech in the nuclear medicine department who gave me the injection of radioactive dye couldn't have been nicer.  He was patient and friendly and put me at ease.  He sent me back to the cancer center where I had CT scans scheduled, since the actual bone scan wasn't scheduled for a couple of hours later, giving the radioactive agent time to circulate.

While I was waiting during the downtime between drinking oral contrast (no crystal light in it anymore - it was giving patients headaches!) and having the scans, I was able to take advantage of a nice program the cancer center offers its patients.  They have a practitioner there who will do Reiki, visualization and other complementary procedures.  My sister works at the CT scan desk there and so had scheduled for me to have a treatment, which I decided would be Reiki.  They have the nicest 'exam' table in this room; it's puffy like there are pillows under the sheet, and it heats up once you are on it!  The technician performed Reiki on me while I listened to a visualization exercise.  It was so relaxing that I could have napped there for a while. From there I went back to the CT room where they scanned my brain, chest, abdomen and pelvis for baseline readings to start the clinical trial.

At this point I was permitted to eat, but was now running late for my bone scan, so just hiked back over to that building.  I'd never had a bone scan before and didn't know what to expect; it's fairly quick and quite painless.

My last scheduled appointment for the day was a pulmonary function test, in yet another building, farther across campus.  I wore my pedometer that day and logged over 8000 steps going from test to test.  I had a few minutes to spare when I arrived so I stopped to buy a bagel and some water.  While I was in line to buy these items, my mobile phone rang.  It was Laura, the research nurse.  She asked me to return to the cancer center rather than go home after my pulmonary function test.  She said we needed to discuss one of my test results.  At first she didn't want to go over it on the phone, but then told me that my chest CT had already been read.  This was good news except for the fact that on the scans the radiologist found a pulmonary embolism.  She and Shari, my nurse practitioner who works with Dr. Rini, were working on getting more information about what to do.  I promised to return to the cancer center and went to check in for my breathing test.  My mind went to lots of dark places - was I in danger of keeling over at any time? - but I realized that if it were that serious, I would have been sent to the emergency department instead.

When I returned to the cancer center, I met with Laura and Shari.  Dr. Rini was out of town so they consulted with one of his colleagues.  They told me that the PE was small and in a peripheral area, which was good news, but that I would need to start anti-coagulation medication.  There are oral medications available, but they explained that those are hard to regulate dosage in a cancer patient.  Instead I was prescribed Lovenox, which I have to inject into my abdomen twice a day.  The syringe itself is pretty cool; it's pre-loaded and includes a spring-loaded safety shield that I activate after the injection to protect myself from the needle; Lovenox has a nice little video explaining it.  The bad part is, I have to give myself an injection twice a day; for the next six months at least.  I've actually gotten used to doing it; being a veteran of numerous medical procedures has definitely lowered my threshold of squeamishness.  After Caroline was born my OB had me do Lovenox injections for several weeks to prevent any blood clots after my c-section.  I remember that experience as being much more difficult; of course I was also in the throes of post partum depression at that time, which certainly colored my perspective.

A few days later, I learned that just like had happened in 2009, the CT scan of my abdomen was not picking up my liver mets.  Laura got me a quick appointment for an MRI so that they would have an accurate record. After the MRI results were released, I got word that I had passed all hurdles in starting the clinical trial.  The day before my first dose, Laura called to let me know that I had been randomized into the Afinitor arm of the trial.  I had mixed feelings about this news, because part of me was excited to be part of trying something new.  But another part of me felt a bit relieved to be dealing with the more known quantity instead.