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.

 

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.
Kel

How I imagine cancer growth

I picture little cancer cells in my body as having a squiggly outline, messy hair and enormous mouths.  I imaging these little monsters hanging out wherever they hang out a in my lymph and blood system, which look like a lazy river.  Each time a source of cancer fertilizer floats by their oger-like mouths start chomping.

This week, with the results of my biopsy, it has been clarified that my cancer is indeed Her2 positive still.  When the cancer originally presented 8 years ago the biopsy came back showing triple positive.

What is triple positive?
It indicates that the my tumors grow in response to the hormones estrogen (as in as many as 75% of cases) and progesterone (as in as many as 65% of cases).  The third + comes from being HER2/nue positive (as in 20-25% of cases).  Her2/nue, often shortened to Her2, is a more aggressive type of cancer.  This was definately the case with me.  

When my cancer was discovered there was a very large and palpable mass.  My Ongologist figured it was probably 10cm.  Between my first and second chemo I could feel one or two additional lumps.  So, in the course of a very short time I believe new masts were growing.  Luckily it was also very responsive the the A/C, paclitaxel and Herceptin regimen I was given. I didn't have any heart health issues which are possible with these drugs other than HBP that was easily controlled and has since almost reversed completely.

When my cancer returned about 3 years ago it was found in my bones.  While a biopsy was performed and extensive testing was done across the country, the results did not indicate the tumor was HER2+ any longer.

So, how did it go from + to - to +?  Bone tumors are very difficult to biopsy - it's a solid matter versus soft tissue.  So, it was probably HER2 positive all along.  In fact, even the biopsy this week failed to indicate being HER2+ in the first test - an ImmunoHistoChemistry (IHC).  Protocol would be to trust the results of the IHC.  But, luckily Dr J requested that they move forward with the next test, a FISH test.  (I say luckily not because I was lucky, but because if she hadn't I would have been angry and insistent that we go back and get the test done. I mean lucky for her since she didn't have to hassle with me.)  It's a little funny to say, "Yeah, I had a FISH test." I feel like I could follow that up with, "they found out I am a mermaid."

Since I was probably always HER2+ and the treatment protocol is different when they aren't treating HER2 I did receive 3 years of treatments that weren't as custom tailored to my cancer as they could have been.  It is easy to ask the question, what was the price I paid for not getting the HER2+ treatment for the last 3 years?  And I will never know the answer.  I don't have to know, because the treatment I received did a great job of keeping the cancer pretty controlled.  I had results that far exceeded average experiences.  I also was able to exhaust a long list of medications.  Had I been treated with a HER2+ regimen for the last 3 years I would have already cycled through a number of chemo therapies that I am just starting now.   Additionally, the drugs I have taken in the last 3 years, while not without side effects, have had side effects that were manageable and allowed me to work and raise my kiddies. 

As I have gone through treatment it has often been my prayer that I would have peace when the choices about treatment I made were good choices that would offer me the best balance between being a druggy and a mommy.  I have had a lot of peace over the last 3 years about the medical choices I have made.  I have been so blessed to know the questions to ask and have felt guided in what I have done.  Another case in point, after visiting with Dr J Thursday I talked to her about adding the bone treatments back into my protocol.  Not that she would have forgotten or not done it, but I am so thankful to know what I need and be able to ensure that my medical team is giving the best of everything I need. 

from the Perjeta website homepage

Starting this week I am going from my 30 minutes of medication (which requires 2-3 hours at the doctor) to a 4-5 hour infusion.  I will go from pre-meds (the anti nausea meds) and a 5 minute injection to premeds, bone strengthener shot and 3 chemo treatments.  (technically 1 is a chemo and 2 are monoclonal antibodies, they are often referred to as chemo, side effects are more mild than many chemo drugs) I will go back on Herceptin, which I took before and had good results with.  I will add perjeta, which from the website looks like it may turn me into a cat. And, to round out the cocktail, taxol. Taxol is a chemo that stops the division of cells, thus making it impossible for those hairy little monsters to divide and grow.  And, because it stops the division of fast growing cells, all fast growing cells are going to get beat-up including hair, nails, gums and the mouth in general, GI track and blood cells, etc.

So I will probably become a hair-less cat. Yes, this is the 3rd time I am loosing my hair this year.  I lost it right about Halloween last year, I remember thinking I should be a pirate.   And, It will probably be gone before the first week of November ends again.  This year I am considering something permanent to decorate my perpetually bald head.  To keep from going on and on about how much I just want to grow long, dark, thick hair I am going to close now. 

Meow.