Thursday, July 9, 2015

My experience with Kadcyla (TMD-1)

Kadcyla is a targeted cancer treatment being used in patients like me who have metastatic breast cancer that has progressed using taxane based chemotherapy.  

Common side effects of Kadcyla include 
  • fatigue
  • tiredness
  • nausea
  • musculoskeletal pain
  • headache
  • constipation
  • low platelet count
  • liver problems
  • low levels of red blood cells
  • nerve problems
  • low levels of potassium in the blood
But, if there is something I have learned about cancer treatment, there really aren’t common side effects.  I have frequently experienced the opposite effect of many drugs.  The truth is making notes about my side effects helps me compare what is happening from one treatment to the next so I can determine which responses are likely side effects from the drug and what may be the result of something besides cancer treatment.  I find this helpful in using meditation to manage some side effects and proactively taking medication for others.

Today was my second round of Kadcyla.  I am on a 21 day cycle - I get an infusion on day one and then 20 days of the drug doing magic inside my body.  Then we start at day 1 again - and that is what makes it a 21 day cycle.

Side effects I have had with Kadcyla
The first side effect is absolutely an emotional response.  As the nurse hangs the pre-med and chemo bags on the IV pole I start to feel a headache coming on in anticipation of the real headache that the drugs give me.  Recognizing this false side effect leaves me taking a deep breath recognizing that I don’t have a real headache and focusing on something else like Facebook, Pinterest or TV.  

About 2 hours into treatment the skin around the IV needle that goes directly into the port in my chest gets itchy.  I am not sure if it is the drugs or the tape.  I notice the itching, but it isn't anything that affects me more than this recognition.  But, when itch starts I always look at the site to be sure there is no redness or indication of a reaction to the medicine.  But, so far I haven’t had that very often. When I do have a reaction, stopping the treatment, getting an extra dose of Benadryl and resuming treatment at a slower pace has worked.

The side effects I do have from this drug are listed below with an explanation of severity and how I manage the side effects.
  1. The feeling I need a nap:  these hits after getting the pre-medication cocktail.  The pre-medication cocktail includes Benadryl to prevent an allergic reaction to the chemo and anti-nausea medication for the obvious reasons.  How I manage: sometimes I take a nap and sometimes I don’t.  If you are a patient getting chemo and you feel the need to nap I encourage you to do it – rest is one of the best medicines.
  2. Headache: I usually get a headache after getting chemo and Kadcyla is no different.  The best treatments for this include: hydration to be sure there isn’t any dehydration contributing to the pain, a brisk walk to push extra oxygen into my body, plain old pain killers to knock out the pain so the side effect doesn’t spiral into something worse, and when it is worse I have medication to treat migraine headaches.
  3. Exhaustion: this isn’t just the need to nap but the inability to focus on anything and feeling like I can barely sit up.  It’s complicated by the feeling that I can’t walk from the living room to my bedroom to get into bed or the feeling that once I get into bed I won’t have the strength to pull the blankets up.  Oh, that sounds so dramatic!  But, that is how “tired” feels when you are going through cancer.  I am not going for a dramatic scene because a cancer patient is usually too tired to care about drama and attention. ~That is how I am anyway.  The best treatments for this include: if I can possibly push past mild or moderate tiredness to act and live normally I do it!  Last time I got Kadcyla I was asleep most of the time for 4+ days.  It is always the worst on the first treatment when my body is shocked by the new drugs along with the emotional workout of starting something new.  The best treatments for me include: resting – when you can’t stay awake any longer then go to sleep, eating healthy protein and some produce – if your body needs the nutrients and you choose good food you can practically feel life coming back into your system, hydration – again just be sure there isn’t any dehydration contributing to the tiredness.
  4. Potty problems: This is so personal and probably not something friends want to read – so just skip this one!  For other cancer patients who may be suffering with diarrhea or constipation you are probably DESPERATE for help.  I know how that desperation feels so I am going to tell you some secrets.  The best treatments for this include: the first secret is a good doctor or nurse will ask about your bowel movements.  There isn’t a drug used to treat cancer that doesn’t cause either diarrhea or constipation – welcome to your new life.  Second, treat this symptom – don’t just endure it.  I have tried to endure and it really messes up life more because you feel rotten and don’t want to leave the house.  When you leave the house you are at risk of getting stuck in a public restroom with a real issue.  NO BUENO!  For constipation: Be sure you are drinking enough water; I have read you should divide your body weight in pounds by half and drink that many ounces of water each day.  An over the counter stool softener for constipation is a good idea.  There is also a solution at your local drug store for severe constipation – a bottle of Magnesium Sulfate which is kept near other constipation remedies.  For less than $2 you can have a drink (at least ½ the bottle) and within hours things get moving.  For diarrhea: this is another issue all together.  The best trick I have is something I learned from a nutritionist at Cancer Treatment Centers of America.  She taught me that a banana with a citrus in a smoothie along with pectin can bulk up what is in your intestines and correct the problem. (Try some pineapple, a banana, pectin and almond milk/coconut water.)  Also, make sure the bacteria in your gut are healthy – add culterelle or something similar to your daily pill popping regimen.  If this doesn't solve your issue - keep searching for a solution. Problems in the bathroom are aweful.  OK – ENOUGH POTTY TALK.  But before you use any of these treatments TALK TO YOUR DOCTOR – they need to be aware of your side effects and you want to be sure there won’t be any negative or dangerous interactions with other medications you are taking.
I have found the best way to manage side effects is to keep track of them so you know when they are hitting you, if they are getting better or worse from one treatment to the next, and to figure out what is working and what isn’t working.

Just don’t suffer through side effects, this is an issue that caregivers can help with a great deal because cancer patients might be too overwhelmed to remember and talk about side effects.  A cancer patients body is doing enough work fighting cancer, processing chemo and coping with the emotional components of their illness.  Side effects can really bring you down because a cumulative effect and there are usually solutions to the side effects. 

You can’t survive beautifully when you are suffering more than you must.


Wednesday, June 24, 2015

The chemistry behind cancer

As I am starting the next phase of chemo treatments and have new biopsy reports back it is a great time to clarify some of the logic behind this crazy cancer care.
When I was diagnosed with breast cancer originally back in 2006 I was very young, only 30 years old.  I had 3 children, the first was born before I turned 26 and I breastfed all 3 children – so, in spite of having children and breastfeeding (two factors that decrease likelihood of breast cancer) I still got it, and very young.
While doctors can get a pretty good idea of whether you have cancer or not, positive confirmation is done through analysis of cells.  So, the biopsy is the definitive determination of whether you have cancer and what type of cancer you have.  Additionally, they test breast cancer cells to understand which elements may be feeding the cancer growth.  Three key elements are tested.  The first 2 test the amount of hormones, estrogen and progesterone, present in the cancer.  The outcome is referred to as being estrogen or progesterone positive or negative.  Positive = the cancer feeds off of that hormone.  The third element test for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells.  Again, positive means that the cancer feeds on this protein. About 1 of every 5 breast cancers has a gene mutation that makes an excess of the HER2 protein. HER2-positive breast cancers tend to be more aggressive than other types of breast cancer. (
So, you may hear about a breast cancer that is triple positive, triple negative, hormone negative and Her 2 positive or hormone positive and HER2 negative.  My cancer was triple positive – estrogen, progesterone and HER2 all assisted in the growth of my cancer.  This is a very aggressive form of breast cancer and, until targeted HER2 therapies were developed, was very deadly.  With the discovery of Herceptin in 2006 for non-metastatic breast cancer and now Perjeta which was FDA approved in Nov. 2014, the prognosis is significantly better.
Wanna geek out? See the Herceptin timeline here. See the timeline of other Genentech drugs, including Perjeta here.
In 2011 when I was diagnosed with metastatic breast cancer the cancer had spread to my spine and sternum.  A biopsy was done, which confirmed that the cancer cells originated from breast cancer.  So, while the cancer was making a home on the bones, it is still breast cancer.  This is true of any metastatic cancer.  It is still the cancer of the original site, whether breast, skin, colon, lung etc.  But, it has spread to a distant site, which is what makes it metastatic. 
The 2011 biopsy of my spine showed the tumor to be hormone positive by HER2 negative.  So, the treatment I had previously for the HER2 protein was effective. 
In 2014 I had a lymph node in my stomach with cancer activity.  That biopsy revealed the cancer was again triple positive, so we added the Herceptin and Perjeta back into the regimen.
My most recent new cancer growth, a lesion on the liver, has been biopsied and shows to be hormone positive and the first test (a stain) showed it as HER2 negative.  A stain test is very subjective because a lab employee is comparing the amount of staining in the specimen to a known positive cell. What one diagnostician may say is a 2+ another may call a 3+.  Therefore, another sample is sent to a central lab for a FISH test.  The FISH test is objective because the diagnostician counts the number of HER2 receptors on the cell.  The FISH test came back saying the tumor is triple positive.
So what does all of that mean?  Well, we know the chemo I have been taking – taxol – is no longer effectively controlling the cancer because tumors have started to grown in the liver.  We also know that the HER2 treatments are ineffective because that protein has not been suppressed in this new growth. 
Last Thursday I began a treatment called Kadcyla/DM1.  Kadcyla was approved in March 2013 for use in metastatic breast cancer treatment. See press release here.
In my opinion, it is good that the liver lesion presented.  The liver lesion gave us soft tissue for a biopsy which tells us about the chemical make of the new tumors in my body.  This makes the choice of drugs based in science, not a best guess.   With the tissue sample we are also hoping to get genomic testing of the tumor done. What is genomic testing? Well, it is looking at the DNA of the cancer cells and determining which part of the DNA is damaged.  It answers questions such as which chemo agents will work best on a subtype of cancer, other therapies that could be effective, etc.  Hopefully over time these tests will become more advanced and will provide even more information.
All of life is a series of chemical and biological reactions.  Cancer is just one of these reactions that went wrong and then reproduced incorrectly out of control and creating a mass of damaged cells in someone’s body.  Understanding the science of cancer is the first step in choosing smart treatments.  I am hoping other chemical reactions will help me to control/master the cancer in my body.  I believe that complimentary medicine, treatment offered along with the western medicine I receive, could help my body fight the cancer growth.  At least, it will make me feel good about what I am doing for myself.  So, one complimentary treatment I am choosing to add is nutrition. 
Kadcyla has the side effect of losing your appetite and this is all the more reason to be thoughtful about what I am putting into my body.  One change is buying organic produce according to the Dirty Dozen, Clean Fifteen theory.  Also, I am realizing how hard it is to get adequate protien – again the lack of appetite. (Guidelines on protein consumption) But, one thing that I have started, and enjoy a lot, is juicing.  Did you know you can juice cabbage?  Did you know broccoli juice is bitter?  I am increasing my fruits and veggies and like what I feel like when drinking fresh juices. 

So, that’s the long update.  

Tuesday, March 24, 2015

The state of me and girls names that aren't the names of girls

I have been off chemo since December.  It didn't start off as a plan to be off for that long, but there were the holidays and then I started having such intense back pain we wanted to get under control.  That pain became debilitating, traveled down my leg and progressed from numbness and difficulty lifting my leg into the car became an inability to walk without focused effort and excruciating pain.
One Monday I was in bed when a friend called.  I had been crying and praying for help when she rang. I answered the phone in sobs.  She dropped everything and took me to the ER where a lot of drugs and a couple of follow-up appointments later I found out the cancer spread to the nerve endings in my spine.  I began radiation and got relief within days.  My leg is no longer numb.  I can lift it again and have recovered a significant amount of strength.  It is truly miraculous to me how quickly I went from traveling across the country for the holidays and then work to being unable to get out of bed and then was back to work again. Another proof-case for the need to enjoy every good moment of your life, and treat all of them like they are good because tomorrow may be so rotten you will wish it was today again.
All this time off chemo has given me so much to be thankful for.  I could say it shows me how much I have been missing, but that just sounds sad and makes me feel low.  I prefer to see the glass half full. 
I have hair.  It took about 2 and a half months to grow enough eyelashes and get them thick enough that they brush on the lenses of my eyeglasses.  I also went in and got a haircut - something I haven't done in about 2 years with the exception of having my neck trimmed once.  I loved it even though I knew I would be loosing my hair again soon.  That day it needed cut and I just enjoyed that experience rather than debating if it was a waste of time and money. Living for the now!
I have also had a different parenting experience lately.  More energy and strength means more normal activities like running errands and crafting and cooking.  I forgot I liked to cook.
My entire body feels different than it has in a long time.  Is this how the rest of the world feels?
But, the chemo-cation is about to end.  T minus 1 day until they start dripping the next hope for NED (no evidence of disease) into my veins.  I have been reading up on all of the studies again.
I have read about Marianne, Th3resa and Emilia - all girl names and none referring to a girl.  These are drug studies for chemotherapy protocols for metastatic breast cancer treatment.  My most recent regimine, Herceptin + Perjeta + Taxotere, sent me to the hospital for vomiting 2 out of the 3 weeks I was getting treatment. I also had migraines and dreaded simple things like walking from the car to my office.  We are now looking to switch to Taxol with Herceptin and Perjeta if it is approved by the insurance company. 
A few weeks ago I took the Herceptin and Perjeta without a chemo agent.  I still had a migraine, though much more mild - only one day - and I recovered to a near normal energy level after 2 days. 
Anticipating what will happen with this round is stressful.  What will I feel like, will it be manageable, and if not, how bad will it be?  I don't think the kids can cope with Mom staying in the hospital again.  I don't know if I can cope with feeling rotten after feeling so good.
So, I know the anxiety will grow over the next day and a half.  But, I also know that God is with me - He is in control and has the power to see my little family through whatever is coming.
So, in spite of the nerves and unknowns, I move forward with conviction and gratitude that I am not alone.
God bless us, every one.

Monday, January 12, 2015

Why women need friends

I have enjoyed a string of happy weeks in a row.  It started with Thanksgiving- my favorite holiday. We had another great year celebrating with friends. It's always so great to be at their house because it is a happy place and they are all (adults and children) great chefs and bakers! 
Next, with the generosity and love many, we spent Christmas in Utah where I grew up. I loved being with most of my family, baby bro couldn't bring his new bride home, but the rest were together. And, I got to connect with many friends including my best friend since 1st grade. 
And, after Christmas a couple of friends from Idaho came down to Texas to make life easier for me by storming in and cleaning the house and putting together freezer meals. 
From my first grade bestie to these awesome women who became dear friends after I entered motherhood I am reminded how valuable friendships with other women can be through out life. 
Having women who see you as you are, admire your talents, accept your short falls, and make you feel good about who you are and what you can still become - does it get better? 
If your friends don't do this for you - get new friends. 
I am so glad for these happy weeks. My soul feels refreshed. I am going to use this fresh feeling to approach the coming treatments with a brightened outlook. I have grown so weary from treatments and hospital stays over the last years, especially in the last 4 months. 
I am going to take a snapshot of this renewed feeling so I can remind myself in the coming weeks. 

Saturday, January 3, 2015

New year, same disease

We have just returned home from 11 awesome days with family. I don't make it back to Utah often- it's just so far away, takes so long to drive and the cost of airfare is insane. This was our third visit in the 6 years we have been away from the region and was the most enjoyable for sure. It was so fantastic to see the mountains and be with my sisters.
I loved getting reconnected with nieces and nephews- all amazing kids with great parents. I am so grateful that even those little ones who don't know me well endured the hugs and kisses with giggles and loved me back. 
While being away from my cancer was a good change I started having really intense pain in my hip and numbness radiating both down my leg and across my stomach. No question something is happening. The Dr. thought it might be arthritis, but it feels more significant than that now. Even getting back home to my bed I am having trouble. I am also noticing some swelling in my leg - I think it could by lymph fluid that isn't draining. Ugh!  
I had some testing before leaving town. Now I have a couple of intense days at work before I will be back at the Dr.  I am feeling concerned about what it is going to be. My greatest fear is a spread of cancer in the lymph nodes around my hip. That would mean this chemo isn't working and we need to switch again. What will the next one be? How will the side effects be? How long will it work? And, why isn't this new cocktail working?  
I like to joke that maybe the answer is that I don't even have cancer. LOL. 
I feel like I have aged 10 years since starting this new chemo around Halloween. I feel pale, my eyes dull, my skin old and my spirit less hopeful. 
Add to this the worries about loosing my FMLA qualification since I am moving to a new employer (same job) and I am truly worried about the future. 
What happened to my faith? 
I am completely dependent on the Lord and the mercy of others if things take a downturn. And, it isn't that I haven't been blessed by both, it is just the potential for a perfect storm on the horizon. 

Let go and let God.