Thursday, November 29, 2012

Still here... kinda sorta

Physically here.  Mentally, emotionally, not as much.  The past few months have been a whirlwind to say the least.  And I for one am exhausted.

Health first... as of October, there was still not a slot open for me in the BMS936558 trial that I hoped to get into.  And my scans showed growth of both liver mets, along with a new one sprouting up.  The pelvic met grew a little.  The lungs were more indeterminate, since they are tiny and hard to catch at that size on CT.  So Dr. Rini felt it was time to let go of the trial and start taking Inlyta.  He said that if he knew there would be an opening in the next four weeks or so that he would be okay with me waiting it out a little longer, but that he didn't want to end up in February or so, still not in the trial, but with a lot of progression of disease.  I agreed with him; I was jarred enough by the growth of one met from 2cm to 5cm.  My tumor load is still low, relatively speaking, but I definitely don't want it to continue to increase.

***EDIT 11/30/2012  I forgot something about the trial when I was writing this, but remembered it later based on a friend's comment on Facebook.  I recently learned from another RCC patient that the investigators are no longer enrolling new participants to receive the combination of the trial drug and Votrient.  That would have been the side I would have been on, since I've already had Sutent.  Apparently too many liver toxicities were found.  Learning this fact made me feel better about missing the trial; it told me that this was not the trial for me after all. END EDIT ***

So, I started Inlyta. I had a delay of a couple of days while my insurance decided I was approved for it.  I had to laugh; I got an approval letter from them about five days after I actually started taking the drug.  At that point I knew it was approved because I had to pay the standard "high tech" copay for it, rather than thousands of dollars.  

I'm taking 5 mg twice a day; oh the joy of having to remember to take it two times.My thyroid TSH level also went sky high, so I saw an endocrinologist who increased my Synthroid dose and changed it to twice a day.  I'm supposed to take the Synthroid alone, on an empty stomach, with nothing after it for 30-60 minutes, so I can't take it with the Inlyta tablet.  My phone has turned into a medication reminder alarm, which has been super helpful.

The side effects of Inlyta are similar to those I experienced on Sutent.  I've had some diarrhea, fatigue, and mouth sensitivity.  Unlike Sutent, Inlyta is taken continuously; no two week break periodically like I'd been used to.  So I've felt the buildup of effects now that it's been almost two months. My mouth is becoming much more sensitive to heat and spice, and my tongue is tender, so hard and crunchy foods are no longer that appealing.  The good news is that effect keeps me from snacking on salty stuff, which is my downfall.  I've kept off the weight I lost while on Afinitor.  That weight loss helped me to meet the goals set by my employee health insurance to earn the 'gold' level of premiums, which is the lowest amount.  So for next year I won't see an increase in our premiums... yay!  If I hadn't made the goal it wouldn't have bothered me since the insurance pays SO MUCH for my tests and drugs now that frankly the premium is a huge bargain to me. But it's still nice to make that goal.  

The "new" side effect is actually an old one in a new place. Hand and foot syndrome is pretty well documented among cancer patients on some drugs.  While on Sutent I got painful red calluses on my feet that made walking painful.  That hasn't happened so far now.  However, a couple of weeks ago I developed a sore spot on the pad of my left thumb, just above the crease at the knuckle joint.  At first I thought it was a paper cut, but then it started to look like a blister.  It wasn't until I started to develop smaller sore blistery-looking sores on the same spot of both of my middle fingers that I realized it was HFS.  It actually hasn't been too bad; still able to use my hands though sometimes opening a container is difficult.  I use lots of lotion on my hands now and hope that I don't continue to sprout these things.

Then there are my legs.  A few weeks ago I noticed that my calves were both really sore; if I sit for a while, when I get up they are very tight and I have to limp around until they loosen up.  Dr. Rini felt them, and could tell where the pain was, I think because they are a bit swollen.  I'm back on blood thinner shots (oh yeah, have to remember to give myself two injections every day too... poor me! ha ha), plus it's exactly the same pain in both calves, so we're not too concerned about blood clots.  By the end of the day my hamstrings are also really sore and sometimes my feet.  I did a little searching on Google to see if there was a connection to Inlyta, but didn't find much.  I'm now wondering if the bad thyroid level is contributing... and if so, hoping that  the higher dose of synthroid will soon relieve the pain.  It really sucks, and gives me a new insight into people who live with chronic pain.

So yeah, I'm kind of a mess right now, though still trying to push through.  Work is insanely busy and stressful right now, as we learn on the fly how to use our new system to get the data out that people want from us.  I always felt a good level of confidence in my skills and knowledge at work, but that has evaporated.  The rest of my team feels the same way, as we're all struggling.  We are all learning, and definitely know more than we did two months ago, but there is a lot more to learn before we feel comfortable.  It is a decidedly "un-fun" place to be right now. Of course, the fatigue and other side effects I'm experiencing are not helping my attitude.  If I can get rid of the leg pain, that will help my outlook tremendously.

Bleah - that was just a big dump of whine, wasn't it?  Oh well, it's not always sunshine and roses on this path.  I'm still fighting and still hoping for better days ahead.  But pain and fatigue make those days seem less likely. It's easy to keep your spirits up when you don't "feel" like a sick person, which has been the case for me for a long time.  I still haven't adjusted to the difference.

More later, as I am past my bed time.  

Monday, November 26, 2012

Ten years of parenthood

A decade can feel like a long time and a short time, depending on whether you are looking ahead at a stretch of ten years, or reflecting on ten that has passed.  Ten years ago today, Jim and I became parents to our sweet Rebecca Grace.  Her entrance into our lives held a little drama, as which I wrote about here when she was four.  We've had our moments of drama since then, as parents always do, especially when raising a sensitive and sweet girl like our Rebecca.  But it's been an overwhelming joy to be her parents.

At ten, she's growing close to 5 feet tall, making it hard for me to remember the tiny girl I used to hold in my arms.  She loves fashion, using her wardrobe in creative ways to show her idea of style daily. In the summer she plays softball, and all year she dances.  Rebecca has been taking ballet classes since she was four, adding jazz classes a few years later.  This summer she tried tap dancing and discovered a talent for it, so those classes continue as well.  Nancy, her dance teacher/studio owner recommended that she try a contemporary dance class this year; it's been a great new experience for her.  The teacher is a young woman who was a student of the studio owner, and the other girls in the class range in age from 11 into their teens.  Rebecca is the youngest in the class but really holds her own.  The class is challenging but she really enjoys the movements; I was relieved to see that she doesn't feel intimidated by being around students who are older.  She hopes to become a student assistant for her Nancy when she is a little older.  Nancy has already had Rebecca "fill in" a few times as assistant in Carly's ballet classes, and she loved it.  This summer her bike riding skills really took off, and she spent a lot of time tooling around the neighborhood.  In the fall, we allowed her to ride to school several times with our next door neighbor, who is a fellow fourth grader.  It was a leap of faith on our parts as parents, balancing our desire to keep our kids safe with wanting to give them some deserved freedom.  They both loved being "bike riders" to and from school, and I'm sure that in the spring they will be doing more riding instead of taking the bus.

Music is another passion of Rebecca's.  She has discovered pop music and plays the radio in her room daily.  That reminds me of myself at her age.  What is different is that Rebecca can also log on to You Tube to see her favorite performers, and to read lyrics that are posted with some of the videos.  Jim and I often hear her singing along to her favorite tunes ("If I Die Young" by The Band Perry is one she loves) and she has even recorded herself on video singing her songs.  She showed me some of the videos, which were great.  I admire her self-confidence in sharing them with Jim and me; as a kid I would NEVER have shown that kind of thing to my parents.  It wasn't that they would have been critical, but I always worried that I was somehow lacking in everything I did.  It makes my heart happy to see that Rebecca has more self esteem than I did.

This school year will be her last in her current elementary school, as next year she will go to our district's one intermediate school.  She's enjoying this year of being in the highest grade in her school.  Her teacher is wonderful and Rebecca adores her; we've been blessed with great teachers at every grade so far.  Rebecca is a great student, which is no surprise to Jim or me, and works hard to do well.  Her school work is one area where she does falter in her self confidence sometimes, especially when it comes to math.  I think the issue is that math doesn't come as easily to her as reading has, but she is clearly a great math student; we've pointed out to her that on standardized tests, her math scores have been even better than her language scores.  I have encouraged her to not dismiss math as "too hard" so that she doesn't limit her opportunities later on.  It's sad that at such a young age she's falling into the "girls can't do math" pattern; I am determined to keep her above ground on that one!

At home, Rebecca loves to read, or as her teacher encourages all of her students to do, to "get lost in a book."  Early in the year she started reading the Harry Potter series and ended up reading all of them in less than two months.  I had never read HP so I decided to get the audiobooks from our library to listen to on my daily commute.  Doing that provided us the opportunity for some great conversations.  This spring she wanted to read The Hunger Games and I decided it would be okay, as long as she stopped reading if it bothered her, and talked to me about it.  She wasn't fazed by the book but rather fascinated by it.  I took her to see the movie when it came out, with the caveat that if she couldn't handle some of the scenes, it would be okay to leave the theater.  Her only negative reaction was to complain about parts of the book that were glossed over or omitted in the movie.  She has since read the rest of the Hunger Games trilogy and we're looking forward to seeing the films of those books when they come out.

Rebecca is a typical tween in that her television tastes run to the tween shows on Disney and Nick; fortunately we restrict TV viewing to weekends to keep the number of hours of being as Jim calls it "mesmerized and hypnotized" to a minimum.  She's not a complete angel, but a regular kid who can be very silly at times and who has to be reminded more than once to do chores sometimes.  And I like it that way.

Looking forward to the next ten years with our wonderful daughter...

Wednesday, August 22, 2012

Art and life

 Last Saturday, Jim, the girls, our friend Sherry and I went into the city to see a photography exhibit, entitled Breast Cancer Captured Through the Eyes of Love.  The photographer, Angelo Merendino, shared his wife Jennifer's battle with breast cancer through some of the most amazing photos I have ever seen.  I had read their story online and started following his page on Facebook, when I learned that he was going to be bringing an exhibition of some of his photographs to Cleveland... to a local cancer support community called The Gathering Place.  I looked forward to seeing the exhibit, especially since it was scheduled to take place at a TGP location on 'my' side of town.  I had plans the night of the opening but hoped to get to TGP soon for the exhibit.

Unfortunately, the exhibit closed six days later.  Even though TGP had agreed with Angelo about the photos to be shown, once they were up, there were complaints from clients and volunteers that the photos were too difficult to look at.  A small furor played out here in Cleveland until a local gallery stepped forward and offered their space.  So, Angelo's exhibit moved from the suburbs into the city, to Convivium 33.  

After my disappointment about the loss of the original venue died down, I was glad that the exhibit was going somewhere I had never been.  I was even more glad when we arrived at the gallery on Saturday morning.  It's housed in a former Roman Catholic church.  It is a beautiful space and was a wonderful setting for photos that showed true love in the midst of some of the worst experiences a family can endure.

I thought I might become emotional when I looked at the photos.  And I did, but not for the reasons I expected.  While some of the images were especially haunting, the ones that affected me most emotionally were of Jennifer in late stages, when she was bald and her face puffy from medication.  Her brown eyes bore through the illness, looking into the camera lens.  Some of the photos reminded me of my late friend Deb, who also fought breast cancer that metastasized to her brain... who also had deep brown eyes that made her beautiful even when the disease robbed her of her natural looks.  I held it together, partly for myself and partly for the girls.  I had debated whether to bring them or not.  I didn't want them to be upset by the photos, or to feel like they were looking at my future.  Before we went, I told them that if they couldn't take looking at the photos, that Jim or I would be happy to leave the gallery with them.

However, I needn't have worried.  Our girls are constantly amazing, and showed it again at the exhibit.  They looked at the photos thoughtfully, though Caroline did want to move along a bit faster than I did at times.  I asked her if she was bothered by the photos but she said she wasn't.  In the lobby of the gallery (the vestibule of the church) there were tree branches set up like a leafless tree.  Note paper with attached ribbon was provided for anyone who would like to leave a message for Angelo.  So, the girls and I took advantage of the opportunity to make a few notes:

Rebecca's note:
The text reads:  I'm 9 and LOVE photography.  You're pictures are the most insparing yet. My mom has cancer.  Hope comes from these pictures.  (signed in cursive) Rebecca M.

NOW I wanted to shed some tears!  Nobody prompted Rebecca to write any of that.  The only help she got was to ask me how to spell "photography".

Caroline's note:

On the left:  Art X0X0X

On the right:  I LIKe your Art work
I'm 6 I Love Art (I re wrote those lines on the left as they were hard to read)
I believe she signed the back but I didn't get a photo of it.

Then my note:  Angelo, as a cancer patient myself (kidney) this exhibit held special meaning for me.  Your love for your wife and hers for you shines through your photos. 

My husband and I brought our young daughters to your exhibit - I wasn't sure if they could handle it but they both were very touched.  I don't know what my future holds but as long as I have the love and support of my family and friends, it will all be okay.

Thank you for sharing Jennifer with us.

Liz Monahan

For sure, some of the photos are difficult to look at.  But it's part of cancer - it's not all about pink (or other color) ribbons.  However, even when cancer and its deadly treatments ravage a person's body, their spirit still dwells inside them.

Saturday, August 18, 2012

Breaking the silence

There are many things that we take for granted, don't miss until we don't have them anymore.  For me lately, this has been stamina.  I definitely tire more easily than I ever did pre-cancer treatment.  Add in the daily tasks of living, commuting, working full time, and by the end of the day I don't have the energy or attention span for anything that needs either of those commodities.  Thus, my long silence here.

Fortunately, Afinitor continues to keep my tumors from growing, which is obviously most important.  Now, I have scans again next week, so that news could change, but hopefully it won't.   But some days I definitely still feel like a cancer patient, between the fatigue, itchy legs, bowel troubles and occasional nosebleeds.  I've had a few nosebleeds while on Afinitor, not many and none severe, but I can definitely say that I've experienced more nosebleeds in the last 6 months than in the previous 47 years of my life.  And of course I've added a new activity to my repertoire... blood transfusions.  My red blood cell counts have really tanked - another Afinitor side effect.  In early June I went into the Clinic and had two units transfused.  The process itself was easy, thanks in part to having my port.  Since my port has two lumens (access points), the nurse accessed both to flush them, and then used one for the transfusion.  I later decided it looked like a small vampire had bitten me, only in reverse!

Above and to the right of the 'bite marks' is the scar from when the port was implanted almost 3 years ago now... it's become very faint.

So then I was ready for the juice.  As a preventive, I was given an anti-nausea medication, and an antihistamine to prevent or lessen hives, which I understand are an occasional effect of transfusions.  The antihistamine just allowed me to nap for an hour or so, which was great because my appointment was early in the morning, and because I'd had lab work drawn, I'd had to fast overnight, which meant No Coffee.  I spent the rest of the time playing on my phone and reading, while the good stuff dripped into me.

Such a pretty red, don't you think?

The transfusion had the intended effect within a couple of days; I definitely felt more energetic.  Dr. Rini told me that I might need to have transfusions periodically, and that period turned out to be shorter than I'd hoped, as when I was at the Clinic for my July visit my counts were way back down.  So I'm going to do it again on the 15th of August, unless I feel really bad before then.  I think I'll be okay, especially since this week is not expected to be as hot as it's been most of the summer here.  So it appears that I've added another intervention to my 'new normal'.  It's interesting how I've become used to these things as they've popped up; I don't even think about most of it anymore.  But when talking to someone not in the kidney cancer community, I realize that what I've now taken for granted is a daunting list of medications and interventions to the other person.  

UPDATE:  I wrote this post several days ago, meaning to put the finishing touches on it and send it out.  Lo and behold, my during my most recent period of procrastination, my saga has moved along.  On Monday I had my usual CT and MRI scans, and on Wednesday went to see Dr. Rini and to be transfused.  As a result of the scan results, I'm no longer taking Afinitor and so no longer part of the clinical trial.  I had a small  increase in size of the two mets in my liver, so I've "progressed" while on treatment, to use oncology parlance.  It's not much of a progression, fortunately.  Other than the changes noted below, there's nothing new and nothing else grew.

CT of Chest:
There are scattered pulmonary nodules bilaterally, all of which are less 
than 5 mm in diameter. For reference, there are two adjacent right upper 
lobe nodules, the larger of which measures 4 mm in diameter and is stable 
since 2/20/2012 exam. A 4 mm right upper lobe nodule us unchanged since 
the prior exam dated 6/18/2012 but is less dense than on the exam dated 
4/23/2012. 3 mm right upper lobe nodule (image 73) is stable since 
2/20/2012. No new pulmonary nodule. No pleural effusion, pneumonia, or 
pneumothorax. Central airways are patent. No endobronchial lesion 
MRI of abdomen/pelvis:

Status post left radical nephrectomy. There is no evidence of local 

The right kidney is normal in size. No focal renal lesions are present on 
the right. There is no hydronephrosis.

The liver demonstrates diffuse fatty changes. Again seen, two enhancing 
hypervascular lesions:

In hepatic segment VIII, 1.5 x 1.2 cm (series 19:26) previously 1.2 x 1.1 
In hepatic segment VI, 2.0 x 2.0 cm (series 19:12), previously 1.5 x 1.3 

There is a 1.2 x 1.0 cm enhancing retro-aortic soft tissue density above 
the level of the renal vessels is indeterminate in etiology but stable 
since the prior study.

The spleen, pancreas and right adrenal gland are normal. The gallbladder 
demonstrates multiple gallstones with no signs of acute cystitis. There 
is no intrahepatic or extrahepatic biliary dilatation.

No adenopathy. No ascites or fluid collection.

Again seen is a 1.4 x 1.2 cm enhancing nodule in the mesenteric fat in 
the upper mid pelvis (series 19: image 19).





However, progression = time to look for something else.  I asked Dr. Rini what else he had in his bag of tricks, which made him smile.  He had two options to run past me.

Go on Inlyta, the newest weapon in the renal cell arsenal, and which was offered to me in February when I decided instead to go with the Afinitor and the trial.  If I qualify, join this trial:

 Um, #2 please... I have been following with interest the comments of other RCC patients on this trial and on other trials using this drug, which used to be known as MDX-1106 but now is BMS936558.  (The letters in those names represent the drug company who makes the drug; in this case it was originally Medarex but then they were acquired by Bristol Myers Squibb.)  The trial drug is an antibody therapy, so works on the immune system, rather than on blocking protein pathways to keep blood vessels from growing to and from the tumor, like the other drugs I have been on.  This trial specifically is looking at pairing up this antibody therapy with a known RCC drug, either Sutent or Votrient, which are similar drugs though not exactly the same.  Since I have already been on Sutent and had progression of disease, I would have to be part of the Votrient arm of the trial.  According to Dr. Rini, there have been more toxicity issues reported with the Votrient patients than with the Sutent patients.  He and Laura will be on a conference call with other investigators this coming Monday and he will know more then.  There are a couple of other small issues to get through, but basically, if the trial is continuing to fill slots for people on the Votrient arm, I am likely to get in.  Please keep your fingers crossed for me as I'd love to try this new drug out.  If I don't make it onto the study, I will at least have Inlyta to fall back on.  So, I won't be devastated if that's where I end up, but I admit I will be disappointed!

Next week I will know more.  Until then, more waiting... and remembering that life is going on during the waiting period, as it always does.


Update on Jim

Some of you have asked me how Jim is doing.  I forgot that I'd left you all with a cliffhanger about his medical issues! So here is his update; I will update myself next.

Jim's back saga has continued throughout the summer.  The MRI that he finally had in March showed that he has a significant herniation of the disc between his L-4 and L-5 vertebrae.  While this was not great news, at least we finally had an explanation for the pain.  He got an appointment right away to see a spine doctor, one who is not a surgeon but does other interventions like injections. (He will be Dr. W here)  This doctor felt that Jim's case was too serious for injections alone to help, so he got Jim an appointment with a spine surgeon, looking for the first appointment available.  I went with Jim to the consult and it was the worst medical appointment I've ever been to... and this includes all of my consults where I was given bad news, and the appointment I sat in on of my father's in 1998 when he was diagnosed with stage IV lung cancer and told that he should get his affairs in order.  This was worse.  The surgeon, whom I shall call Dr. X, asked Jim to explain what was going on, and Jim told him, including the worthless ER visit described in my March post.  Dr. X chastised Jim right away, saying "You mustn't blame the people in the ER - that was correct.  You had bladder and bowel function so your case was not emergent.  Pain is not an emergency."  Oh boy... I could feel the hope leaving the room with those words.  He did a brief exam of Jim, and told us that the surgical procedure was a relatively simple one, but then told Jim that he is not a good candidate.  He cited Jim's weight and type 2 diabetes as being "severely complicating" issues.  He told Jim "I'm not saying I won't perform surgery on you" but then proceeded to explain why Jim shouldn't have it.  He told Jim that he needs to be walking, that sometimes these injuries resolve themselves, and that he might just be in pain for a year. Like, oh well...  I asked Dr. X flat out:  if Jim was thinner and did not have type 2, what would his chance of success be?  "oh, 90 to 95%!" said Dr. X.  Ok, so I got it... because it is riskier to operate on someone who is obese and who has diabetes, both conditions being associated with healing issues, well, Dr. X didn't want to chance messing up his statistics.  That told me that even if we decided to go forward with the surgery, that Dr. X would NOT be the surgeon operating.  He asked if we had any questions as he prepared to leave the office and I asked him about giving Jim more pain medication, since he was in such agony.  Dr. X was surprised... "you mean Dr. W didn't write you any prescriptions?"  No, Dr. W thought you would operate, Dr. X.  He told Jim that the amount of Percocet he was taking was too low, so he prescribed a much higher dose, along with a muscle relaxer and another pain medication.  So at least we got that.  *sigh*

So, Jim contacted Dr. W, who said, well, let's try doing injections; however, I think you should have them at the hospital rather than here at our offices, so he referred Jim to a pain clinic at the main campus of Cleveland Clinic.  Jim got in to see Dr. Y, who has a great reputation, that gave us more hope.  His resident did the initial assessment and asked Jim a lot of questions, then Dr. Y came in.  He recommended a series of 3 steroid injections into Jim's back, to be done at monthly intervals.  He explained that it might help enough to help him heal, but even if not it would be worth trying before surgery.  Of course the wheels of bureaucracy turn slowly, so while waiting for approval for the injections, Jim made an appointment with another surgeon, Dr. Z, who knows Jim's brother.  That appointment went much better than the first surgical consult.  Dr. Z did a more thorough examination of Jim, and showed us the areas of concern on Jim's MRI.  Unfortunately, besides the herniation, Jim also has some pre-existing bone spurs and narrowing of the spinal channel, which likely should be addressed surgically at some point anyhow.  Dr. Z recommended that Jim go through the injections first, and then when/if he feels like he is not being helped, to come back to discuss surgery in more detail.  He agreed with Dr. X that Jim has complicating factors but wasn't fazed by them like Dr. X was.  We felt much better after meeting with Dr. Z.

Jim had his first injection in late April.  He was sore for a few days but then began to feel improvement.  He had been lying in bed most of the time before this, so seeing him able to move was wonderful for the girls and me.  We had hope that the next injection, in late May, would really help but it turned out not to be the case.  Jim said that a few minutes into the procedure he started to feel intense pain on the inside of his leg, which he screamed through.  (nice, huh?)  After that, he found that while the initial back pain has indeed gotten much better, he had this new pain spreading across his glutes and in his legs.  If the new pain hadn't been there, he felt that he would be close to pain free.  When Dr. Z's office called to follow up on him a few days after the injection, he told them that he was a lot worse, and so was transferred to Dr. Z's secretary, who told him she would have Dr. Z talk to him ASAP and they would try to get him in to see him as soon as they could.  Dr. Z never did call back.

The third injection was not until late July, because there is a limit to how much steroid a body can take.  At that appointment, Jim told them what his experience was during and after the second injection, and felt like they didn't believe him.  Dr. Z looked at Jim's MRI again and decided that the space was very small where the injection needed to go, and so the pressure of the fluid was likely causing the pain.  OK, but why did he not get this pain after all of the injections?  For that we have no answers.

At this point Jim can schedule another injection, though there doesn't seem to be much use in that.  He did get Dr. Z to write him a prescription for physical therapy, which I think could really benefit him.  If you know Jim, please remind him to call for a PT appointment... if you know Jim you know he's not always his own best advocate.  He was told by Dr. Z's resident that it would also be reasonable to contact the surgeon if he didn't feel the injections were helping at this point.  I'd like to see what physical therapy could do for him first, though if he ends up needing surgery, then so be it.

He's definitely in better shape now than he was prior to the injections - at that point he could barely stand or sit.  Now he gets around, albeit with a cane, and takes rest breaks, but is otherwise pretty active.  If we could just get this new pain to disappear, he'd be back to himself.

Sunday, May 20, 2012

Cleveland Clinic thanks you for 25 years of service

It doesn't seem possible that I've hung around with one employer for a quarter of a century. But it's true, and I now have the watch to prove it. More updates soon, I promise.

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.

Monday, February 13, 2012

Time for changes... lots of changes

The new year is supposed to be a time of change, but my first big change of the year isn't something I expected or hoped for.  Sutent has failed me, according to my most recent scans.  I have a new lesion in my liver, about 1.1cm, joining a smaller one that has remained.  (I had four of them in 2010)  According to my chest CT, "multiple (>20) new and enlarging predominately right-sided pulmonary nodules.  For example, previous identified 2-mm nodule in the anterior segment of the right upper lobe now measures 4mm.  Persistent poorly marginated ground-glass nodule in the posterior segment of the right lower lobe. Few scattered granulomas."  As Dr. Rini noted, the report sounded worse than the actual view when he looked at the CT scans himself.  I had multiple tiny dots in my lungs already, which in the previous scan were noted as "improving bilateral pulmonary nodules, representing favorable response to therapy."  So, the news is not as bad as it could be, and I remain oblivious to these little things living inside me, as they cause me no discomfort.  On the other hand, it was a blow to get the news that it was time to go to another drug therapy.

Dr. Rini had two options to recommend to me.  The first is a brand new drug called Inlyta, but better known to the kidney cancer community as Axitinib, its generic name.  Inlyta was just approved by the Food and Drug Administration late last month.  It works similarly to Sutent and is approved to treat patients who have failed one targeted therapy (such as Sutent).  It's a pill, taken twice a day, so doesn't involve any infusions, etc.

His other recommendation was to go onto a clinical trial of a different class of renal cell drug, where they are comparing the response of patients to an approved drug called Afinitor to that of patients taking a new drug being developed, currently called GDC-0980.  If you enjoy reading clinical trial information, you can read about this one here.  I was intrigued by the idea of trying to hit this stuff via a different pathway, so was interested in participating in the trial.  After discussing it with Jim and with my online RCC friends, I decided to go ahead with the trial.  I will be having initial testing on February 20th, and will find out around the 28th whether I will be taking Afinitor or GDC-0980; the study is randomized so that they have some people in each 'arm' (taking one drug vs the other) but is not a blind study.  With this class of drug there is a very small chance of developing lung issues, which would resolve upon stopping the drug.  I decided the risk is worth it to try this out.  Axitinib is a good choice to try, but my instinct is telling me to go in a different direction.  Time will tell if that will be a good decision, but if I fail at the trial, Axitinib (and other approved drugs) will still be there waiting for me.

I won't lie, despite the fact that the amount of new disease is small, this set back felt like a blow.  It took me a couple of days to get past the emotion of impending death and get back to fighting mode.  It even took a day for me to really feel sad; I think I was in shock and denial for the first 24 hours or so.  It sucks but I have to try to work with what I've got if I want to keep living.  That's all there is to it.

Now for the less sinister of the changes I'm working through... My employer's medical insurance has been working to save money while also encouraging employees to live healthier lifestyles.  To this end, they have identified several conditions for which employees are encouraged to work with a nurse case manager to try to maintain or improve their condition.  The target areas include hypertension, asthma, high cholesterol, etc.  and of course obesity.  Targets are set for each program for which you are enrolled, based on the health condition, and you have periodic contact with your case manager.  If you meet your targets by the fall, you qualify for the lowest premium for the next year.  Our insurance premiums have 3 tiers - the lowest premium is charged to people who don't have any health conditions that need to be monitored or managed, or who have met all targets; the middle premium is charged to those who are enrolled in the appropriate medical management program(s) but who weren't able to make all of their targets, and the highest premium is charged to people who opt not to participate in the medical management program at all.

I'm in two programs - hypertension and obesity.  I've had high blood pressure since the 3rd trimester of my pregnancy with Rebecca.  It's been kept in control by medication, even with being on Sutent.  So compliance with that program hasn't been a problem.  On the other hand is the obesity program.  Based on the first documented weight of the year, they determine how much weight you need to lose that year in order to meet your target.  They have encouraged enrollment in Weight Watchers, which they pay for, in Curves memberships, which they also pay for, or enrollment in fitness centers located within the health system.  It's been a pretty passive program until this year - there was no requirement to do anything specific.  But this year that has changed.  I was told that I needed to enroll in Weight Watchers or in a Curves weight management program, or to go for a consultation at the Clinic's metabolic clinic - aka the bariatric clinic.  My case manager has been working with me for a couple of years now, and talked to the medical plan's medical director on my behalf before our first consult this year.  He waived any requirement for me to consult with the bariatric folks... I would hope so!  Also, given that I have had the ongoing issue of a leg ulcer while on Sutent, the Curves program wasn't being pushed.  So that left Weight Watchers.  Now, I could skip enrolling in WW and just work more seriously on losing weight on my own.  If I meet my weight target by the fall, then I will qualify for the lowest premium next year.  However, if I don't meet that weight target and did not sign up for WW or Curves, I would have to pay the highest premium next year.  By enrolling in WW, I am ensuring that I will pay the middle premium next year at worst.

Now, given a lifetime of obesity (since 3rd grade) and being on diets and eating plans of all kinds, I have some idea about what a healthy diet should be.  Understanding and sticking to it are of course two different things.  I have avoided diet programs for a long time, however, because I realized that the stress I felt about success vs. failure caused me to lapse into bulimia.   Fortunately for me, I am able follow WW in a low-stress setting this time.  Instead of going to meetings, I enrolled online.  WW has a food tracker app, so I can log in what I'm eating whenever I have my phone handy, which is basically all the time.  My family claims I am not annoying them with constant looking up, calculating, and talking about WW points values, which is so sweet of them because I would be sick of hearing it if I were them!  Another thing I like about this plan is that nothing is forbidden; there is no list of forbidden foods.  If I want something that is a high-point item, I just need to work around it.  Wow, eating like real life.

It's only been a week and already I've had success, having lost 6.5 lb.  I know this will slow down in coming weeks, and that is okay.  I truly believe that I will never be 'thin' and am not striving for that, even if my medical insurance is.  But there is room for me to eat a better diet, for sure.

Friday, January 06, 2012

Popping out of the foxhole

I didn't realize just how long it has been since my last post until just now.  Wow.  I miss writing here; I am constantly thinking of things I'd like to talk about but never force myself to do it.  I hope you all had a happy holiday season and are enjoying the new year.

Tonight on Facebook I saw a link to a story and video clip of US presidential candidate and former senator Rick Santorum, talking about how people should be charged more for health care coverage if they have pre-existing conditions.  The link is here.

Blaming people for their health issues is ludicrous - there is often no way to know why they have the issue they have.   I'm not even speaking for myself here... it's entirely possible that I have kidney cancer because I am fat - therefore it is my "fault", since obesity is widely considered a risk factor for many cancers.  But while I would be charged more for insurance - or even be denied coverage - what about another cancer patient, who has always maintained a normal weight, has always eaten a healthy diet, has exercised regularly, never smoked, and did all the other "right" things?  Would they get to pay less than I would, even though we would both be costing the insurance company the same large amount for our treatments?  

Let's say the answer is no, they would also pay an increased premium.  OK, well then, what bad choices did they make that justifies a higher premium?  Nobody can point to anything, so the good-choice cancer patient is going to complain, and rightfully so, that they are being penalized for something that they didn't cause.

Now think about the other answer... if the good-choice cancer patient doesn't have to pay a higher premium, how is this saving the insurer any money?  It isn't.  Sen. Santorum says it's all about charging more to those who cost the system more.  But by adding the whole notion of assuming that high cost medical issues are in large part a result of poor personal choices, what he seems to really be saying is that we should penalize people who do "bad" things to their bodies. Now it's no longer about having those who receive more benefit pay a larger share, but about punishing people.  And punishing them for issues that can't be easily proven to be directly caused by their actions and choices.

After I read the story above, I read another article where in explaining why it would be okay people with pre-existing medical conditions to be denied coverage, he compared health insurance to car insurance.  He states that it's not fair for people to only buy coverage if they are sick and know they are going to use it.  He also thinks that maybe insurance should only cover large-ticket care and we should all pay for our own "maintenance" costs.  OK, this would make insurance cheaper.  But would it save money in the long run?  I don't believe so.  If people don't have coverage for well visits, prescription drugs, immunizations, etc. then many of them are not going to pay out of pocket for those things.  Then what happens?  If they get REALLY sick, they incur huge health costs.  We see this daily in the overuse of emergency room care in the US.  Maintenance care can catch things early and keep complications from happening.  Ask any dentist about this - if you go for your exams and cleanings regularly, problems can be caught early so that you might not need really expensive work later.  

Sen. Santorum also stated that 

"insurance rates shouldn’t pay for your general maintenance any more than they should pay for the general maintenance of your car. [...] Should they pay for the operation, well just as much as they should pay for the car accident."  
Wait a minute... a car accident is something that happens unexpectedly.  Do most accidents occur because drivers didn't get regular oil changes, fluid checks, and other maintenance?  Of course not. But accidents aren't the only high costs that can be incurred by car owners.  Engines and transmissions break, brakes fail, lots of other things happen, none of which car insurance will pay for.  So the argument doesn't really hold up to me.

In another video clip, Sen. Santorum makes fun of the idea that everyone should be able to be covered by the same high level of health insurance.  Meanwhile on his own web site, he says "Every American should have access to high-quality, affordable health care".  I guess it's okay to have access to it, even if I can't afford to actually purchase it, in his world.

I work for an employer who offers excellent health care coverage at a very reasonable premium.  I feel extremely fortunate to have this coverage.  My insurance plan has spent an enormous amount of money on me over the last almost seven years.  However, during that time, I've been able to maintain full time employment, pay my taxes, and generally live my life.  The idea of having lesser, or no coverage, scares the bejeezus out of me. 

I totally agree with everyone on both sides of the political spectrum that we have an enormous health care problem in the United States.  I just don't think that Sen. Santorum's ideas are going to solve anything.