Diagnosed at age 50 with Stage IV breast cancer (mets to lungs). Treatment plan included 7 rounds of chemo (Taxotare/Perjeta/Herceptin) once every 3 weeks. Then a unilateral mastectomy with lymph node dissection. Currently on maintenance of Perjeta/Herceptin infusions once every 3 weeks, along with Tamoxifen (an oral med taken once per day). I'll never be able to dance with NED, but there is currently No Evidence of Active Disease. The cancer will always be there, not necessarily active.
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The following advice is based on my own experience with cancer -- chemo, surgery, and all that goes with it:
If you have a
Port site will be sore for a time after insertion -- sleep sitting up
for a time.
Get one of those things to wrap around the seat belt in the car to
cushion port site.I’ve found that these
Port Pillows work wonderfully, and she’ll mail you one for free:www.portpillows.com
Put Lidocaine on port site before chemo (your infusion nurses may give
you Lidocaine and Tegaderm (the clear plastic to cover it), or your doctor may
give you a prescription for Lidocaine, and you can cover it with Saran Wrap).
Make sure the shirt you wear to chemo makes it easy to access your port.
Suck on a popsicle or ice chips as chemo med is going is to prevent
Use plastic utensils to offset the metallic taste when eating.
Mints or hard candy to help with the metallic taste, and dry
mouth.What works best for me at the
mints they hand out at Chick-fil-A.
Take blanket to chemo, as most infusion centers are chilly (or, most
infusion centers have blankets).
Pack light.For my first chemo
session, I took a bag with a book, some knitting, a coloring book and colored
pencils, snacks for me and my husband, a few magazines, tons of stuff to keep
me occupied.I ended up sleeping through
most of it.Now I bring some knitting
and make sure I have a book loaded on my Overdrive or Kindle app on my
phone.Some infusion centers provide snacks
and/or lunch.Check to see if yours
does.Definitely bring a notepad and
If having Neulasta after chemo, take
Tylenol before shot
Claritin the morning of, and three mornings
Set up a notebook to keep all of your medical information.
Register for a Look Good, Feel Better session
Sign up with Cleaning for a Reason
Look into a retreat for your family with Little Pink Houses of Hope
Monetary Cost Cancer is expensive. I have
good health insurance. Really good health insurance. Even with very
good health insurance, though, cancer is expensive. Every time I visit my
primary care doctor, which is about every four months, I have a $10
copay. No big deal. Every time I visit my oncologist, which is
every six weeks (down from every three weeks while I was undergoing chemo), I
have a $15 copay. Every time I have treatment (Herceptin and Perjeta
infusions), which is every three weeks, I have a $30 copay. In addition
to these routine things, I see my cardiologist, my surgeon, my gynecologist, my
ophthalmologist, and my oncology rehab specialist periodically. That's
$15 each visit for each specialist. On top of these copays, there are other
medical costs. Luckily, for my Tamoxifen prescription, I am able to
receive a 90 day supply, which is no cost to me. My other prescriptions,
however, are between $10-$20 each month. Then there are the physical
I got to meet the people who work for the company where the medicine that keeps me alive is manufactured. How cool is that?!
Genentech is the biotech company that produces two of my maintenance medications, Herceptin and Perjeta. Click on the links if you want more information on the company and/or the medicines and what they do. I receive Herceptin and Perjeta via infusion once every three weeks. These medicines keep the cancer at bay. I will be on them for the rest of my life.
Genentech has a program called Patient Connect. I was a part of that this year. I flew out to San Francisco to visit the company and to talk to their employees about my experience with Perjeta. Over the course of three days, 12 patients, on different medications, were there to speak to the employees. My day was Friday. The day started at 7:15am when a car picked my husband and I up from the hotel to drive us to the campus. After a quick breakfast, it was make…
did it. I bought a cane.
I have balance issues. I can't walk up/down even a curb without holding onto something for balance. I've found myself at work walking next to the wall in case I need to reach out to steady myself. Whenever I'm standing, I find the nearest thing to lean on. Whenever I walk with my husband or sons, they automatically put out their arm for me to hold on to. I'm going to physical therapy for my balance issues, in addition to the muscle cramping. They think that it's fatigue driven. I think they're right. I am working on pushing through the fatigue, but wow, it's hard. So, I had been mulling around about getting myself a cane. Not to help me walk, but just to help me keep my balance. Hopefully I will be carrying it mostly and just using it to lean on when there's not a wall or a post handy. In that aspect, I think it would be very helpful. On the other hand, I worry that I will become dependent on it. When I mentione…