On Beyond Cancer

My life with metastatic breast cancer

Neuropathy June 30, 2014

Filed under: Uncategorized — onbeyondcancer @ 8:42 pm

I’m happy to report that the swelling in my feet and legs has nearly gone away.  Unfortunately, I have a new side effect from the Taxol/Carbo – peripheral neuropathy.  Right now it is the soles of my feet and lower legs that are affected, with numbness and nerve pain.  Neuropathy is a common side effect of both Taxol and Carboplatin, but it tends to be cumulative, so I was a little surprised for it to be happening after just three doses.


I talked to the nurse practitioner today about it.  She recommended I take a B complex vitamin, massage my feet with lotion a few times a day, and try a drug called Neurontin to help with the pain and numbness.  I am starting with a low dose just once a day.  Neurontin has some fun side effects including clumsiness and amnesia.  I can also take my usual pain pills.  This week is a chemo break for me, so that should help too.  I’ll talk with Dr. T at my next appointment about whether any changes are needed to my chemo regimen.  I hope to be able to stick with the chemo dosage I have since it seems to be working and just manage the symptoms of the neuropathy, but we will see what she has to say.


Hair everywhere June 28, 2014

Filed under: Uncategorized — onbeyondcancer @ 1:30 pm

Me with my hairstylists.

My hair started falling out earlier this week, right on schedule.  This is my third time losing my hair, so it isn’t fun or anything, but I’m used to it.  Yesterday the boys and I went out for frozen yogurt and a hair fell in my yogurt.  Yuck.  Time for a haircut.

The boys were excited to cut my hair.  Ethan cut my hair last summer when I was on Halaven, so he is a pro now.  We went out in the yard after dinner and they spent about 20 min shaving my head with the buzzer.  Impressive, especially when you consider that I didn’t have much hair to start with.  🙂  They took the job very seriously.  Ethan was especially gentle.  Oddly, the whole thing was very sweet.  Mike had to spend a few minutes evening it out for me.  He left about a quarter inch.  It feels much better now.

Today I’m wearing a new scarf that my mom helped me pick at the MSK cancer center boutique.  Hard to tell from the photo, but it is light green with a pink tulip print.  I also ordered another scarf and cap online that are nice and light for summer.


Liver Directed Therapies June 27, 2014

Filed under: Uncategorized — onbeyondcancer @ 5:27 am

During my appointment at Memorial Sloan Kettering, one of my goals was to find out whether I would be a candidate for any treatments that specifically address the liver.  From my perspective, my liver has often been the location of disease progression and the reason that I needed to switch treatments.  Of course I know that I do have tumors in my bones and lymph nodes that all of them are the same type of cancer cells.  I should also note that my regular oncologist, Dr. T, has not encouraged any of these, but I needed to ask anyway.  The doctors explained that the new approaches are to target cells anywhere in the body that have certain mutations, rather than going after cancer cells in one organ.  Targeted treatments have fewer side effects because they spare healthy cells, as opposed to chemo which kills all rapidly dividing cells, leading to stomach problems, hair loss, etc.


We discussed hepatic chemoembolization, a process that involves putting a catheter into the liver to inject chemotherapy. Dr. Naidoo explained that it is a very toxic procedure typically used in patients who have colorectal cancer that spread to the liver and no other parts of the body.  It requires an overnight hospital stay and is so painful that patients are given a morphine pump.





Two types of radiation to the liver called radiofrequency ablation and liver brachytherapy (radioactive seed implants) are sometimes used.  Drs. Traina and Naidoo felt these would not be likely to lead to a major improvement for me.




The other option we discussed was liver transplant.  I knew that I would never be a candidate on a transplant list, but my sweet sister was willing to share a bit of her liver with me – now that is just true sisterly love.  Even if that were possible, the doctors explained that after an organ transplant I would need to take immunosuppressant drugs to avoid “rejecting” the new tissue.  Those drugs would allow the cancer to run rampant throughout my body.  I’m happy I asked anyway, because now I know the reason why it wouldn’t work. 


The good news I got is that it is possible for the liver to regenerate itself.  The areas that have been taken over by cancer won’t change back to healthy liver cells, but new liver cells can grow.  Dr. Traina suggested that I focus on labs like bilirubin and liver function tests because they are a better measure of how well my liver is working than how much of my liver appears to be cancer cells on a scan.  She said that even with my recent spike in AST and ALT (liver function), my bilirubin has remained at a normal level (a very good sign).  Also since I stared Taxol/Carbo there has been a dramatic change in the AST and ALT numbers.



Memorial Sloan Kettering Appt June 26, 2014

Filed under: Uncategorized — onbeyondcancer @ 7:25 pm

Tuesday was my consultation at Memorial Sloan Kettering in NYC.  The appointment was early so we stayed Monday night at a hotel nearby that offered a discount for patients.  My sister was supposed to join us and was unfortunately unable to, but my Mom was able to come instead on our adventure.  My Uncle Bob happens to be a retired NYC police officer and excellent city driver. I am grateful to him for door to door service – dropping us at our hotel Monday evening and picking us up at the cancer center Tuesday afternoon!!


View of the East River from our hotel room.

My experience at MSK was very positive.  Nearly every employee, from the receptionist to the doctor was extremely helpful (I encountered only one cranky person but was able to charm her anyhow). I met with Dr. Tiffany Traina and also her fellow in training, Dr. Jarushka Naidoo.  for about and hour and 40 minutes. Both of them were very thorough, both did exams, and answered every question I had.  Dr. Naidoo reviewed my cancer history over the last four years in detail, gave her interpretation of my most recent scan results, and made suggestions about treatments they could offer me.  She didn’t think that the most recent scans were as bad as they seemed.  The scans indicate a liver problem but she thought the floating tumor thing (carcinomatosis) was not at all conclusive since it didn’t indicate specific sizes of tumors like X cm by Y cm.  She also though that what was found in the lung was likely irritation from the liver, Afinitor, or the virus I had a few weeks ago. Then I was examined by both doctors and we talked in more detail about my current chemo regimen and future treatments with Dr. Traina. Dr. Train felt that the Taxol/Carbo chemo I’m on is already showing signs that it is working and I should stay on them as long as possible. If they become too toxic for me, I can drop Taxol and keep taking the Carboplatin. I would then be able to use Taxol again later if need be.


In terms of future treatments, Dr. Traina recommended other chemos that were likely to work well for me.  She is going to test me for a new hormone receptor called the androgen receptor for which there are hormone injection treatments.  Dr. Traina felt my best options would be trials for genetic therapies (matching my Foundation Medicine testing) and immunotherapies.  She said there are several I would be eligible for and new ones are added daily. I am in the system now so if I have progression I can contact Dr. Traina and give her my scans and she will check to see which trials are available at that time and get me enrolled quickly. The only downside is that because they are brand new treatments (phase 1 trials) most of them would require weekly visits to NYC.


I’ll write a few more posts this week about details of the possible future treatments, other questions we asked, and treatments they specifically recommended against.  I am so glad I came and I feel a huge sense of relief.  I got so excited about the possibilities that I started crying happy tears!!


Feeling better June 22, 2014

Filed under: Uncategorized — onbeyondcancer @ 9:22 pm

I haven’t had much chance to write this week, but I did want to give some updates.  I had chemo again this Wednesday.  We did the chemo teaching session first to learn about side effects; nothing new, just the usual.  I have a lot of swelling in my legs, so they did a precautionary ultrasound just to make sure there were no blood clots and everything was fine.  As my liver function improves on chemo the swelling will likely go down.  I ordered a pair of high quality compression knee highs for the meantime from the company that makes the arm sleeves I like.

I lost about 4 lbs of water weight last week so the ascites is greatly improved and I am so much more comfortable.  My liver function blood tests look good too.  I feel very hopeful about this chemo combination.  My friend Diana is taking one of the drugs with excellent results, especially for her liver.  The nurses were shocked that I noticed changes so quickly. 

I also got a hard copy of my CT results from last week.  Reading the report myself, when I was clear headed, I noticed a few important points:
1. The “majority” of the right lobe of my liver has tumors, but not all.  Majority is a bit vague.  More than 50% but less than 100%?
2.  They couldn’t determine if what they saw in my lung was inflammation, infection, or tumor.  Since my liver is just underneath and probably swollen, inflammation seems possible.
3.  They were comparing it to my previous CT which was a year ago, not more recent PET scans.  Apples to apples, but a lot has changed in the last year.
4.  With some quick internet research I learned that it is nearly impossible to tell whether there is carcinomatosis (tumors in ascites fluid) from a CT scan, so of course its possible, but I’m not sure it is useful or accurate.

All of this to say, I’m staying positive, one day at a time.  I’ve been able to get out of the house a few times since Wednesday’s chemo; visited my Great Aunt Betty and even went swimming.


CT scan results June 16, 2014

Filed under: Uncategorized — onbeyondcancer @ 8:45 pm

Dr T called me Friday evening with the results of my CT scan from that morning.  As I suspected, there were problems with my liver.   The right lobe of my liver has been overtaken by cancer cells.  The left lobe is still functioning at about 75% normal.  I do have moderate ascites (swelling) in my abdomen and they don’t know whether or not there are cancer cells floating in the fluid.  They also found cancer in my right lung, as well as the previously existing R hip. 

This news was overwhelming, of course, and hard to share.  I want to tell everyone that I am still fighting hard.   I am on a very aggressive two drug chemo combination, which I’ll continue weekly, taking a break on every fourth week.   I am having some pain, but have been managing it with a combination of naproxen (for swelling), Tylenol with codeine, and percocet.  I also have an appointment at Memorial Sloan Kettering in NYC next Tuesday, June 24.  I will talk to a breast oncologist there and hopefully an oncologist who specializes in tumors that have spread to the liver as well.

Please don’t panic.  I have lots of help at home. I am in good spirits and also as stubborn as ever.  Positive thoughts and prayers appreciated.



Started a new chemo combo today June 11, 2014

Filed under: Uncategorized — onbeyondcancer @ 2:22 pm

Dr T was working on trying to get me into a trial, but over the last few days I’ve been feeling sick.  Today I decided it was time to come in for a doctors visit.  I have had swelling in my legs, abdomen, and one of arms.  Also pain in my abdomen, hips, lower back, shoulder, and legs.  I have been managing OK with 3 pain pills a day, but today the abdominal swelling was making it hard to breath deeply.  Dr T said I have ascites, a kind of abdominal swelling caused by liver problems.  One of the medical assistants thought I was pregnant and I gained 4 pounds of water weight.  Dr T was also concerned with my breathing.  She said we can’t wait for the trial.  I am getting chemo right now, a combo of carboplatin and taxol.  Most common side effects are low blood counts, fatigue, and hair loss.  My premeds are 2 nausea drugs Emend and Aloxi, Benadryl, Pepcid, and Decadron (a steroid).  I am feeling ok and really glad I decided to come in today.


Talked with Dr T June 5, 2014

Filed under: Uncategorized — onbeyondcancer @ 8:52 pm

Last night I had a chance to speak with Dr T about my blood test results from last week.  She said they definitely show Afinitor is not working and I will need to switch.  Today or tomorrow she is going to talk with Dr H at the Cancer Institute of NJ about my next treatment and clinical trials available in New Brunswick.  Based on my DNA testing, there are a few trials that may be a match for me.  One in particular gives two already approved chemo drugs (carboplatin and taxol) and experimental drug that is a targeted treatment (not a chemo).  If for some reason I can’t participate in any of the trials, I will probably do carboplatin chemo.  I should hear from Dr T tomorrow on the new plan.

I also decided to go for a consultation at Memorial Sloan Kettering Hospital in NYC.  It is the best cancer hospital in the area, possibly even the country.  There is an entire building just for breast cancer and they have many sub specialists like oncologists that handle only liver metastases.  I know some of you are cheering right now; Aunt Amy and Uncle Bob get ready to be my transportation/bodyguard team!   Dr T called today to do a physician referral for me.  It is usually faster than calling on your own and also means her secretaries will gather a lot of the information I will need to bring with me.  I am not planning to make a permanent switch, unless they offer something I can’t get anywhere else.  I’m just hoping to get some guidance on which treatments are more likely to work for me and also find out what they have in terms if clinical trials.


Hair to Share video June 4, 2014

Filed under: Uncategorized — onbeyondcancer @ 10:36 pm

You may remember my cancer modeling as Mrs. August for the Hair to Share Foundation’s 2014 calendar. This video was recently produced by the foundation to explain what they do:

Hair to Share Video


Trip to Florida

Filed under: Uncategorized — onbeyondcancer @ 2:46 pm

A few weeks ago, I took a trip to Orlando to visit my sister.  We try to do a girls weekend once a year.  The last time I flew to Florida by myself I ended up in the hospital, so this year I started preparing about a week before to make sure I was fully hydrated.  I downloaded an app for my phone called Water Your Body (there are other better ones if you are willing to use the metric system) to help keep track of the amount of water I was drinking.  Also, my sister got a case of bottled water and a few bottles of gatorade for me.  Everywhere I went in Florida I took a bottle of water plus filled my stainless steel water bottle.  Also, my sister forced me to take daily afternoon naps.  I guess this all worked since I didn’t visit any hospitals in Florida this time.


Anyhow, we had lots of fun on our trip.  We saw a theater show at the local Fringe theater festival called “Sharknami”, did some shopping on Park Avenue, went to the spa at the Loews Portofino hotel, had lunch at an organic tea cafe called Infusion Tea, went to an old-fashioned ice cream parlor, and spent the day at the De Leon Natural Springs.  We also had the chance to have dinner with two of my sister’s friends Kirsten and Charlie.  It was a great, relaxing trip.

Me outside the Bass Pro Shops, smiling as a gator sneaks up on me.

Me outside the Bass Pro Shops, smiling as a gator sneaks up on me.


De Leon Springs.  We took a quick dip in the water because it was only 70 degrees!

De Leon Springs. We took a quick dip in the water because it was only 70 degrees!