On Beyond Cancer

My life with metastatic breast cancer

Chemo today October 30, 2013

Filed under: Uncategorized — onbeyondcancer @ 1:56 pm

Getting my infusion now.  Counts were good.  I was a little worried about platelets because after the finger stick it took awhile for my finger to stop bleeding, but everything is fine.  Ryan was up a lot last night, so I’m sleepy today.  Going to try for a nap.


Tumor marker from last week is in October 27, 2013

Filed under: Uncategorized — onbeyondcancer @ 8:15 pm
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Dr. T ordered a tumor marker last week as a baseline since I just started Gemzar.  We have been so busy I actually forgot all about it.  Just checked it today and it is up 8 points, from 91 to 99.  That doesn’t really mean much.  I’m a bit worried about trusting the number at all since it was going down even with progression in my liver.  


Gemzar has been mild.  Just a bit of tiredness.  I felt well enough to take the kids mini golfing on Friday night, but we didn’t stay out too long.  


Looks like my hair is making a comeback.  The hair that I have is getting longer, but not really filling in yet.  So it will be scarves for another month or two.


A busy week coming up.  Treatment again on Wednesday and then assuming I’m feeling up to it, Wednesday evening I’m going to a dinner for the Hair to Share Foundation.  The calendars are ready for distribution!  I know a number of people are interested in getting one.  I’m not sure yet what the process will be, but I know I’ll have an update for you later this week.


Possibilities for personalized cancer treatment October 25, 2013

Filed under: Uncategorized — onbeyondcancer @ 9:22 am

In searching for more information about the genetic testing Dr. T had recommended I found this article explaining the partnership between the testing company, Foundation Medicine, and the pharmaceutical company, Novartis.

Genomics Goes to (Clinical) Trial

Foundation Medicine will profile tumor genomes for Novartis’ cancer drug trials.

A partnership between pharmaceutical giant Novartis and genomics company Foundation Medicine could bring more cancer therapeutics to the clinic at an accelerated pace.

Novartis plans to use Foundation Medicine’s genome interpretation technology as part of its clinical trial enrollment process for cancer drug testing over the next three years. This type of tumor genome analysis, which involves searching for potential drug targets in the genetic sequence of tumors, is already an important part of Novartis’ clinical trials, reports GenomeWeb.

One of the promises of genomic sequencing and personalized medicine is that drug treatments can be tailored to the genetic anomalies of a patient’s tumor, which may be quite different from those of another patient’s tumor. Novartis could use the genomic profiles of patients’ tumors to better select participants for their clinical trials or perhaps to identify new molecular targets for treatment.

“The comprehensive molecular assessment of Novartis’ Oncology clinical trial samples is expected to help to bring potentially lifesaving therapies to the right patients more quickly, and we expect that the wealth of molecular information will help fundamentally improve the way cancer is understood and treated,” said president and CEO of Foundation Medicine Michael Pellini in a statement.


Breast cancer lingo October 24, 2013

Filed under: Uncategorized — onbeyondcancer @ 11:17 am

After a chat with my dad the other day, it occurred to me that I am probably using a lot of “lingo” here that doesn’t make sense to some of my readers.  I am so absorbed into cancerland from talking with healthcare providers and other patients that I don’t even realize it.  So I’m going to start working on a mini-glossary.  Here are a few terms that might help:

biopsy – The removal of cells or tissues for examination by a pathologist. The pathologist may study the tissue under a microscope or perform other tests on
the cells or tissue.

blood count –  The numbers of red and white blood cells and platelets in a sample of blood.

bone metastases/bone mets – Cancer cells that have spread from the first cancer site, such as the breast, and are growing in the bones.

bone scan – A technique to create images of bones on a computer screen or on film. A small amount of radioactive material is injected into a blood vessel and travels through the bloodstream; it collects in the bones and is detected by a scanner.

brain metastases/brain mets – Cancer cells that have spread from the first cancer site, such as the breast, and are growing in the brain.

chemoembolization – A procedure in which the blood supply to a tumor is blocked after anticancer drugs are given in blood vessels near the tumor. Sometimes, the anticancer drugs are attached to small beads that are injected into an artery that feeds the tumor. The beads block blood flow to the tumor as they release the drug. This allows a higher amount of drug to reach the tumor for a longer period of time, which may kill more cancer cells. It also causes fewer side effects because very little of the drug reaches other parts of the body.

CT scan –  computerized tomography – A series of detailed pictures of areas inside the body taken from different angles. The pictures are created by a computer linked to an x-ray machine. Also called CAT scan, computed tomography scan, computerized axial tomography scan.

infusion – A method of delivering fluids or drugs, usually into a vein.

lesions/mets/metastases – I’ve been using these interchangeably to mean small tumors made up of breast cancer cells that are located somewhere other than the breast (i.e. a breast tumor in the liver).

liver metastases/liver mets – Cancer cells that have spread from the first cancer site, such as the breast, and are growing in the liver.

MRI –  magnetic resonance imaging  – A procedure in which radio waves and a powerful magnet linked to a computer is used to create detailed pictures of areas inside the body. Magnetic resonance imaging makes better images of organs and soft tissue than other scanning techniques, such as computed tomography (CT) or x-ray and is especially useful for imaging the brain, the spine, the soft tissue of joints, and the inside of bones.

neuropathy – A nerve problem that causes pain, numbness, tingling, swelling, or muscle weakness in different parts of the body. It usually begins in the hands or feet and gets worse over time. Neuropathy may be caused by physical injury, infection, toxic substances, disease (such as cancer, diabetes, kidney failure, or malnutrition), or drugs, including anticancer drugs. Also called peripheral neuropathy.

PET scan – A procedure in which a small amount of radioactive glucose (sugar) is injected into a vein, and a scanner is used to make detailed, computerized pictures of areas inside the body where the glucose is used. Because cancer cells often use more glucose than normal cells, the pictures can be used to find cancer cells in the body. Also called positron emission tomography scan.

radiofrequency ablation – A procedure that uses radio waves to heat and destroy abnormal cells. The radio waves travel through electrodes (small devices that carry electricity). Radiofrequency ablation may be used to treat cancer and other conditions.

resection – Surgery to remove tissue or part or all of an organ.

tumor marker – A substance that may be found in tumor tissue or released from a tumor into the blood or other body fluids. A high level of a tumor marker may mean that a certain type of cancer is in the body. Examples of tumor markers include CA 125 (in ovarian cancer), CA 15-3 (in breast cancer), CEA (in ovarian, lung, breast, pancreas, and gastrointestinal tract cancers), and PSA (in prostate cancer).


I got these definition from a few different places online including Breast Cancer Care, the Metastatic Breast Cancer Network , and the National Cancer Institute Dictionary of Cancer Terms.  If there are others that need explaining, leave me a comment to let me know!  Also, for those who haven’t been reading since the beginning, you may want to check out What is Metastatic Breast Cancer?  and Keeping Track of Metastatic Breast Cancer.


New chemo today – gemzar October 23, 2013

Filed under: Uncategorized — onbeyondcancer @ 10:02 am

Starting gemzar today.  Feeling pretty good.  I had a little abdominal pain last week that  went away after about a day.  I’m getting one anti nausea drug called Aloxi, then the chemo.  Dr T said she thinks my side effects will be minimal. 

I did some thinking this week about my response to the various drugs and realized that the liver is really my stubborn area that is less responsive to the various treatments I’ve had.  With that in mind, I asked Dr T whether we could try a treatment that could specifically target the liver and then use one of the previous treatments where I’ve had a partial response in the bones to manage the bone lesions. I asked about three treatments: liver resection (surgical removal of the lesion), chemoembolization (delivering chemo directly to a lesion via a catheter), and radio frequency ablation ( using radiation to destroy the lesion).  She said the resection was definitely not worth trying, too risky and unlikely to make a long term difference, but she is going to look into the other 2 options.  She felt that the genetic analysis was much more likely to be helpful.  So this week I’ll need to followup with the insurance company to see how much of the test they’ll cover.  There is apparently a program where pharmaceutical companies make drugs still in development available if they match based on the genetic analysis.  Need to do more research on this too.


Chemo teaching and a big thanks October 17, 2013

Filed under: Uncategorized — onbeyondcancer @ 10:26 pm

Chemo teaching today was relatively uneventful.  The nurse practitioner told me that Gemzar is typically well tolerated.  Many people have flu like symptoms the first day.  The other side effect we will have to watch out for is low blood counts, but they do a finger prick every time I come in the office to check.  Nausea with Gemzar is typically mild so I will only need one nausea premed via IV (Aloxi).  She also said that it is likely my hair will start growing again. 🙂

Just wanted to say thank you to everyone who has supported us this last week with positive thoughts, prayers, and offers of help.  It’s so nice to know that you are thinking of me and our family.  Have a lovely evening.


No chemo today, moving on to a new drug October 16, 2013

Filed under: Uncategorized — onbeyondcancer @ 3:18 pm
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I had an appointment with Dr. T today and she had the revised radiology report comparing my October 2013 PET scan to the June 2013 CT scan.  As we expected, the left side of my hip is healing.  But I have a large liver lesion that has grown from 4.5 cm (or 1.9 in) in June to around 7.5 cm (3 in) now and there are new mets in two lymph nodes that weren’t there in June.


I have to admit I was a bit blindsided by this report.  I kind of expected them to say the June and Oct tests were similar or maybe slightly improved.  Anyway, the growth of the liver met means that Halaven is not doing it’s job and it is time for something new.


Since I‘ve had some neuropathy the past few weeks, we decided not to choose a drug that was likely to cause neuropathy (for now anyway).  The two drugs we considered were Doxil and Gemzar.  There is no information that either one is more likely to work than the other, so we went with the Gemzar because the expected side effects were milder.  Here’s a link to the patient guide for Gemzar – apparently the pharmaceutical company thought that dogsledding was a popular activity for patients with metastatic cancer??


I go tomorrow for “chemotherapy teaching” though at this point I feel I could be the teacher.  The schedule will be the same as Halaven, weekly, for two weeks on, one week off (basically once a week, taking a break every third week).  Typical side effects for Gemzar are low blood counts (white, red, and platelets), nausea, vomiting, etc.  It’s possible my hair might grow back on this drug.  I don’t know yet what premeds I might need, but I’m guessing they will include at least one drug for nausea.  The infusion of the chemo drug takes 30 min, so my total chemo time will be a little longer.


We also talked a bit about future treatment options.  My doctor wants to consider doing some testing on a sample of the tumor to see which chemos it might be most sensitive to (i.e. which ones are likely to kill it).  The technology for this is new and not a sure bet.  The major downside is that we would need a fresh sample which means another liver biopsy.  :-(:-(  I talked with Mike afterward and we decided that I’d only do that IF they gave me something to help me relax (like Ativan) AND wrote an order for Percocet before sending me to the recovery area.  These were both problems with my first liver biopsy that I don’t plan on repeating.  Something about the way the nerves run in the liver makes pain from the liver feel like it’s in the right shoulder and across the abdomen.  I’ve heard that the liver biopsy experience varies greatly depending upon where the biopsy location is (the liver is quite large) and how close it is to other organs like the lungs.


MBC Awareness Day October 10, 2013

Filed under: Uncategorized — onbeyondcancer @ 8:58 pm

As I look around at all the pink ribbons this month, I really wonder who ISN’T aware of breast cancer. I do know that few people are aware of metastatic breast cancer, even though 30% of women diagnosed with breast cancer go on to develop mets. In 2009, the US Senate and House declared October 13 Metastatic Breast Cancer Awareness Day in an effort to raise awareness. Here’s some information from the Metastatic Breast Cancer Network website:


13 Facts Everyone Should Know about Metastatic Breast Cancer

1. No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life.

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

4. Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.

5. About 6% to 10% of people are Stage IV from their initial diagnosis.

6. Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person’s original diagnosis and successful treatment checkups and annual mammograms.

7. 20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.

8. Young people, as well as men, can be diagnosed with metastatic breast cancer.

9. Like early stage breast cancer, there are different types of metastatic breast cancer.

10. Treatment choices are guided by breast cancer type, location and extent of metastasis in the body, previous treatments and other factors.

11. Metastatic breast cancer is not an automatic death sentence. Although most people will ultimately die of their disease, some will live long and productive lives.

12. There are no definitive prognostic statistics for metastatic breast cancer. Every patient and their disease is unique.

13. To learn more about National Metastatic Breast Cancer Awareness Day on October 13 and to access resources specifically for people living with metastatic breast cancer and their caregivers, visit www.mbcn.org.


PET scan results October 8, 2013

Filed under: Uncategorized — onbeyondcancer @ 12:54 pm

My PET scan results are in, but a little difficult to interpret because they compared them to my last PET scan in August 2012.  Since then I’ve changed treatments and had 2 CT scans, so my doctor is going to ask the radiologist to try to compare my CT scan from June 2013 to the October 2013 PET scan.  For the moment, it looks like my bone mets are improved in my L hip and stable in my R hip, there are no lung mets, and some of the liver has improved.  All good news.  Three areas that we are trying to get more information about are a large liver met (7.5 cm) and two mets in lymph nodes, one in the chest and one in the abdomen.  Hopefully the radiologist can give us some clarification on whether those are new since June or just stable.  To avoid this confusion in the future, I’m going to have PET scans; they have the benefit of showing bones as well as the liver and lungs.


Otherwise, I’m fighting a head cold – congestion, coughing, and now fluid in my R ear.  What did you say?  I can’t hear you?  🙂  My doctor called in a Z-pak (antibiotic) for me so that should help.  I’ve also developed what I think might be mild neuropathy from the Halaven; numbness and achiness in my hands and feet.  This is pretty typical, but the doctor is going to check it out at my appointment next week.  Apparently the exam involves walking on your tip toes…


Tough day, but some good news October 3, 2013

Filed under: Uncategorized — onbeyondcancer @ 8:26 pm

I had a restless night last night for no particular reason.  Just couldn’t turn off my mind.  I woke up exhausted and with a headache.  This morning I had a PET scan, so I had to fast.  My appointment was not until 10:30 AM and the scanning process took 1.5 hours (not including paperwork, etc), so it was about 1PM before I could eat anything.  Once I finished the paperwork, they gave me a radioactive sugar injection and then I had to wait for an hour so that it could move through my body.  They told me not to sit too close to Mike because I was radioactive!  The scan itself took 20 min in a CT scan type machine.  I slept through most of it, waking up only when the table moved through the scanner.  We should have the results early next week. 

For the good news – tumor markers dropped another 22 points down to 91.  Woo hoo! 🙂 🙂