On Beyond Cancer

My life with metastatic breast cancer

Update May 31, 2014

Filed under: Uncategorized — onbeyondcancer @ 8:53 pm

I still have my lingering cough, but my other viral symptoms are gone.  Both boys caught the virus from me and were home from school most of the week.  It was quite an adventure.

I had a drs appointment on Wednesday.  I told Dr T about the symptoms I had this month including both shoulder pain (referred from the liver) and bone pain in my R hip.  We talked a bit about the future and I had a minor crying fit that took me completely by surprise.  My prognosis depends on my response to treatment and so far I have really only had a good response to Xeloda.  I told Dr T that I didn’t think the Afinitor was working either.  She said we’ll see what the tests say.

So on Thursday my blood tests were disappointing.  My white count was low (about half of normal), my liver function tests were abnormally high (5 times what they usually are), and my tumor marker was up 50 points to 185.  Ugh.  Dr T is at an oncology conference until Monday so I’ll talk with her next week.  In the meantime, I called the nurse practitioner to make sure my liver didn’t need urgent attention.  She suggested the abnormal tests were caused by Afinitor, but with the rising tumor marker and pain I’ve been having, I kind of doubt it.

I’ll post more info when I have it.  I’m OK, just frustrated.


Save the date May 28, 2014

Filed under: Uncategorized — onbeyondcancer @ 6:07 pm


This year the Steeplechase Run/Walk is on September 28.  More information on how to register after I set up our team.


Close call May 25, 2014

Filed under: Uncategorized — onbeyondcancer @ 11:29 pm

I’m going to start this post by telling you that I did NOT need to go to the hospital. Kind of a spoiler, but didn’t want to leave you in suspense. Ok, now you can keep reading.

Yesterday I had body aches most of the day, but in the evening chills started.  In a half hour my temperature went from 99.9F to 100.8F.  Of course it was a weekend and a holiday, so when I called the doctor I got the service.  They took a message and said that I would get a call back from Dr T’s covering Dr.  As I waited for the call, I started packing my hospital bag.  I was pretty sure the Dr would tell me to go the ER to have my blood counts done, checking for a dangerous problem called neutropenic fever that occurs when you have too few white blood cells to fight an infection.  A friend of mine has had this issue several times and has been hospitalized to get IV antibiotics.

I just finished packing the bag when the covering Dr called back.  I told her the details and she checked my records.  She thought that since I have been on Afinitor for a few months without a dip in white blood cell counts, it was more likely just a virus.  I was surprised because I felt that Dr T would have told me to go to the ER immediately.  I pressed her a bit on this and asked what exactly I needed to watch for to be able to tell the difference between a fever that is no big deal and one that needs attention.   She told me that I should take Tylenol and call again if the temp got higher because a neutropenic fever would not go away with Tylenol.

It was a nerve wracking night, but I did not have to go to the hospital.  The body aches have mostly disappeared and I’ve got the usual cough and sniffles.


A Diva for a Day May 10, 2014

Filed under: Uncategorized — onbeyondcancer @ 9:57 pm

My friend Jenny nominated me for a day of beauty and relaxation through the program, Diva for a Day.  To nominate someone, simply fill out their online form here.  They are currently able to provide spa services to patients living in NJ, NY, OH, TX, and FL. The Skin Deep Salon and Spa donated a day of services.  I received a facial, massage, lunch, haircut, highlights, and makeup application.  The spa was excellent and I would highly recommend it to anyone who is in the area.  I was not feeling particularly well that morning; I have been having a lot of pain in my right shoulder (referred from my liver), so I almost didn’t go.  I am so glad I did because it was a lovely day.

Although I’m not usually a huge fan of facials, the esthetician was great.  She was very gentle and friendly.  The heated table and warm towels she used to remove the various cleansers were really relaxing.

Next came the massage, which was really good. I asked her to focus on my neck and shoulders. I am always tense there, but the pain from the liver made it worse than usual. She also was especially good at massaging feet and then wrapped them in a warm towel. This warm towel thing is becoming a pattern. 😉

I had a nice pasta dish for lunch – it was yummy, but it also feels so luxurious to eat lunch in your bathrobe.
My hair was next; the highlights were well done, but a little more red than I wanted them. Since the whole day was free, I’m not complaining.

I finished the day with the makeup artist. I asked her just do something subtle. It was a Wednesday night and I had no plans for the evening. She showed me how to properly define eyebrows – a handy trick for a cancer patient.

As I left they gave me a lovely bouquet.


Mouth sores better May 6, 2014

Filed under: Uncategorized — onbeyondcancer @ 11:07 am

My mouth sores have stopped hurting!!  All but the last stubborn one have healed.  I start tomorrow on my lower dose, Afinitor 7.5 mg.


Dr T is doing a 10K May 3, 2014

Filed under: Uncategorized — onbeyondcancer @ 10:37 am


Dr T is running (or maybe walking) a 10K today to support the Cancer Support Community, an organization that provides free services to cancer patients and their families including counseling, support groups, educational materials, yoga, etc.  If you’d like to make a donation, you can go to:


Dr T on the right, with other NJ runners.


Lower dose May 1, 2014

Filed under: Uncategorized — onbeyondcancer @ 11:24 pm

I went to see Dr T today to have her take a look at my mouth sores.  I was concerned that I might have thrush and/or a gum infection in addition to the mouth sores which would require different treatments.  She said that I have mouth sores on my tongue and gums, but no thrush or gum infection.  Sores on those areas just look different than the inside of the lip. Because I’ve started having trouble eating, we decided I should take a short break from the Afinitor and restart on 7.5 mg (instead of 10mg that I take now) when the sores heal.  She didn’t think that the lower dose would be less effective.  She also suggested I try an over the counter treatment for canker sores called Zilactin that creates a clear coating over the sores.  I’m also continuing the magic mouthwash, baking soda or salt rinses, lidocaine, and occasionally pain pills.  Oh and also my milkshake and Italian ice therapy, prescribed by me. 😉