On Beyond Cancer

My life with metastatic breast cancer

Chemo teaching and test results June 27, 2013

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Today I had a chemotherapy teaching session.  This is my third chemo so I knew a lot of it already.  The nurse practitioner basically just reviewed the major side effects for the drug and told me how each would be handled.  Also if I have a fever of 100.5, I have to call immediately and come in for blood tests to check my immune system functioning.  I am getting an anti-nausea pill that dissolves under the tongue and works much faster (would have come in handy during my Florida episode).  I also scheduled appointments for chemo, blood work, and Xgeva for July – early September.

 

My echocardiogram results were in and were normal except for “grade 1” diastolic dysfunction.  This means that I have a very mild problem with the blood not emptying out of my heart fast enough.  I’ll have to talk to the pulmonologist about it and may need to get referred to a cardiologist.  It’s not a serious problem, but the nurse practitioner thought it might explain my breathing issues.  Treatment, if any, would be blood pressure medication.

 

My blood test results were also in.  Tumor markers were 145, 10 points higher than last month.  I actually expected a bigger increase, so it’s not too bad.

 

New chemo starts Tuesday June 26, 2013

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Monthly checkup today at the oncologist, plus discussion of new chemo.  We are still waiting on the full results of the echocardiogram, but preliminary results were almost exactly the same as the MUGA scan.  At this point, both doctors think that I do not have either a heart or lung problem, perhaps high blood pressure and of course anxiety.  

My doctor suggested a chemo called Halaven.  It’s supposedly generally well tolerated and major side effects are low white and red blood cell counts (decreased immunity and mild anemia), neuropathy (nerve pain especially in the hands and feet), and nausea.  55% of patients have hair loss, but the others don’t.  This drug is given in a three week cycle where chemo is on day 1 and day 8, then a one week break before you start again.  So basically two weeks on, one week off.  My “best” days will be toward the end of the three week cycle in terms of minimal side effects and energy levels.  Most of my infusions will be on Wednesdays since that’s one of my days off.  They will be monitoring my blood counts at each appointment.  I’ll also still be getting the bone building shot on an every 4 week schedule, so that means I’ll be at the doctor’s office almost once a week.

The infusion of the Halaven will take only about 5 min, but I will also be getting 3 nausea drugs via IV: Emend, Decadron, and Aloxi.  I’ve had all three of these before and they worked really well.  So the total time for my infusion should be 45 min to an hour.  

I still need to read up on this drug and do some research into the hair loss thing.  I was expecting it to be either definitely yes or no, not this weird 50/50 situation.  I’m hoping I can find out WHEN it is likely to happen if at all, so I know that if it doesn’t fall out by a certain point, I’m probably in the clear.  My doctor didn’t give me a prescription for a wig yet, she says wait and see. I do have the one I used last time, but if I need one I want to get something shorter (I hate the feel of the fake hair on my skin) and also a baseball cap with attached ponytail kind of style.

Tomorrow I meet with the nurse practitioner for a chemotherapy teaching session.  She’ll review all the possible side effects, what to do about each, and when to call the doctor.  She’ll also give me any new prescriptions I need for things like nausea drugs and go over the dosing and schedules.  Then next Tuesday (July 2) I get my first treatment.  Mike is planning to come with me for the first two treatments, but after that I might bring a friend or a relative sometimes, just for a change.  

 

Echocardiogram done June 25, 2013

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Just finished with the echocardiogram.  Wasn’t sure what it would be like but it was just an ultrasound of the heart.  It was funny to hear my own heartbeat.  Reminded me of the prenatal ultrasounds.

My blood pressure was high again, around 153/90, but other than that the technician said everything looked fine.  A cardiologist is going to review it and then send a report to my doctor.

Tomorrow I see Dr. T to decide on a new chemo.  A little nervous about that.

 

New stress management program June 23, 2013

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Paint by number.  This is called “Adirondack Evening.”. I wanted something smaller but all the small ones were puppies and birds.

 

Appt with pulmonologist June 20, 2013

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The appointment with the pulmonologist Tuesday was super long, but went well.  He took a really thorough history and did a few simple tests to monitor my breathing and oxygen levels.  Based on all of that (plus the scans), he said that he does not think I have any serious lung problems.  He thinks that my trouble breathing while lying down is due to anxiety/stress levels affecting the breathing “sensors” giving me the perception of shortness of breath.  I know I gave him a look when he started talking about anxiety being the cause because I thought he was going to say it was all in my head.  But he said that in fact the anxiety could change the message being sent to my brain.  Obviously decreasing my stress levels would be a good idea, but that is kind of hard, so he suggested that I continue with a low dose of Ativan or try an Advil or Tylenol PM kind of thing.  He said that if I truly had a lung problem, such as low dose of Ativan would wear off in the middle of the night and I would wake up short of breath.

 

As for shortness of breath with exertion, he thinks that may have a different cause.  He says the MUGA test did show some decrease in heart efficiency, but that small decrease would only be noticeable in someone who was morbidly obese.  He wants me to have an echocardiogram (ultrasound of the heart) to see whether my borderline high blood pressure is affecting how efficient my heart is.  It provides similar, but complementary information to the MUGA test I had last week.  If there is a problem, I’d need to be followed by a cardiologist and most likely be put on blood pressure medication.  If that test turns out fine and I continue to have problems, he might try giving me an inhaler or Advair to see if that helps at all even though he doubts that I have asthma. 

 

All very confusing, but hoping this next test can sort it out.  He said that we shouldn’t let concern for my lungs influence chemo choices over possible effectiveness of the drug and is going to talking to Dr. T. about it.  So that is good news.

 

I realized after my last post that I forgot to mention the frequency of chemo for the new drug coming up.  Each drug is different, but none of them are more often than weekly, some as infrequent as every three weeks.  Many will also require additional visits for blood counts (checking my immune system) and Neulasta (an immune boosting shot).  I have an appointment next Wednesday with the oncologist to decide on a drug and I expect treatment will start that week or the next.

 

 

Scan results in June 17, 2013

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So my scan results are in.  My heart and lungs are fine.  There is some slight heart damage caused by the chemo I had 3 years ago, but it’s still in the normal range.  My lungs also show some small “nodules” which the doctor thinks are unlikely to be causing me trouble breathing as well as changes from my radiation three years ago.  At this point she recommends that I see a pulmonologist to try to figure out what is going on.  I have appointment for that tomorrow.  He is going to look at my scans and might run more tests if need be.

 

The bad news from the scans is that the cancer in my liver has been growing since late April despite the Xeloda.  My doctor said that this is probably causing the increase in tumor markers we saw in the last blood test and that the Xeloda is no longer working.  I’ll be meeting with her next week to discuss starting a new treatment.  I’m not sure yet which one it will be, but she says likely we will pick an infusion (IV) chemo.  She says there are many different choices and the primary deciding factor will be which side effects we believe will be most tolerable/easy to control for me.  There isn’t good evidence that one particular drug or another is best to try next.  Each drug has a different set of possible side effects (things like nerve pain/damage, hair loss, nausea, etc) and of course not everyone experiences all the side effects.  Also, there are really good medications to prevent certain side effects, but not others.  For example, lots of drugs to prevent nausea, but none for hair loss.  So it will really come down to choosing the lesser of evils.

 

Also, just wanted to note that IV chemo is not necessarily more difficult than the drug I’m on now, but certainly more annoying and requiring more time in the doctor’s office.  In case you were worried this will cramp my style, I’ll definitely be brainstorming how I can use my “chemo time” for something fun/productive.

 

I haven’t had a lot of time to think all of this through yet.  I am doing OK so far with it.  I expected that my time on Xeloda was ending based on the blood work and just how I feel, so I am not surprised, but I’m also kind of dreading IV chemo and the new set of side effects and treatment schedule that will come with it.

 

 

Rough afternoon yesterday, but scans done June 15, 2013

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Yesterday I had CT scans of my chest, abdomen, and pelvis and a MUGA scan of my heart.  I was at the hospital for about 4 hours to get all of that done.  I had the easier drink once again which was good.  It took them a few tries to get my IV in as usual and it was on the inside of my wrist.  That’s apparently an easy, but painful spot to access.  I figured that I was done with needles then and that they would just use the IV for the rest of the scans, but for some reason the MUGA required an injection directly into a vein.  It took two more tries to get that in, finally in the hand.  I was doing OK until the technician started asking a bunch of questions about my diagnosis and my kids WHILE stabbing me with a needle.  The pain, stress, lack of food, and exhaustion just got to me at that point and I broke down in tears.  Not one of my more graceful moments.  Then several people walking by decided to tell me that everything was going to be fine.  Uh, ok.

 

So I came home had a peanut butter sandwich and a pepsi, then fell asleep for 4 hours.  When I woke up it took me awhile to figure out whether it was morning or night.  We watched some silly TV before I went back to bed for the night.

 

Today I’m just bumming around the house.  Should get the results Monday or Tuesday.

 

 

Another doctor visit June 11, 2013

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So today I was back at the doctor again.  I started having trouble breathing while lying down on Sunday night.  I called right away Monday morning and was told to get a chest x-ray.  The x-ray was fine – I do still have a nodule in my left lung, but that is nothing new.  This morning I had a visit with my doctor and she listened to my heart and lungs and did a full exam but didn’t find anything wrong.  They did a quick check and found that my oxygen levels were slightly lower when I was lying down compared to standing or walking.  At this point it’s unclear what is wrong.  They have so far decided it is not fluid in or around the lungs, pneumonia, large tumors, or asthma.  Friday I’ll have a CT scan and also a MUGA scan – it’s a nuclear test that measures the percentage of blood that passes through your heart in a certain amount of time.  One of the chemo drugs I had three years ago is known to decrease the efficiency of the heart at pumping blood.  I’ve had this test twice before (both before and after my chemo in 2009/2010), and the second test showed a small decrease in efficiency, but nothing that could cause a real problem.

So we’ll see.  For the moment I am trying to sleep propped up and back on Ativan at night again.   I am mostly OK during the day, but do have a bit of trouble with exertion. And I was finally starting to get back to normal, or whatever normal looks like for me… Ugh.

 

Talked with my doctor June 5, 2013

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I finally got to talk to my doctor today.  She was attending a cancer conference,  so can’t fault her for that. Anyway, she was definitely concerned about my tumor markers.   She agreed that my previous scans were too far apart to give us the most useful information and that it was possible that I had a dramatic improvement between scans and that now we are seeing increased activity.   My last set of scans was 6 weeks ago, so she recommended we do one more blood test before rescanning.  If my markers are still elevated at my next appointment,  I’ll have scans in late June or early July.  If those show more/ bigger lesions, I will most likely be switched to a different chemo.

I also mentioned that the person who took my call last Friday didn’t tell me that my doctor was out of town.  Dr. T checked my file to see who took the message and said the person “would not be with the office much longer”.  Uh oh. At first I thought she was being fired because of me, but apparently there is more to the story.

 

Finished with radiation June 4, 2013

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Today was my last radiation session.  The treatment should continue working for a few weeks, but the pain has already decreased greatly, with just some mild redness to the skin.  Much better than narcotics.

 

My doctor has been out of town for a few days, so I hope to be able to speak to her tomorrow about the tumor markers.  I did finally get a call today from the covering doctor, but not surprisingly he didn’t make any recommendations one way or the other.  On my list of things to talk about (in addition to what the heck is going on): what’s a non-significant increase in tumor markers, asking her to call automatically whenever the markers are beyond this range, and asking about setting up a regular schedule for scans so that we can get a better idea of the effectiveness of a particular treatment (versus only scanning when there are “symptoms”).