Treatment Possibilities

Today was information overload!  

I'd rather get started on learning all of my options than stay in the "waiting place," so today was also a good start in the right direction.  

I met with Dr. Fleener this morning and tried to get all of my questions answered.  There are still too many up in the air, but here's a little of what I learned.  Some good.  Some bad.  Some terrifying.  

I will have a combination of radiation and chemo.  There are quite a few options and different combinations, depending on the aggressiveness that I choose to go with.  

Chemo Option One:

This is the most aggressive and the one she recommends.  It is a combination of 3 drugs--1) Herceptin, the drug I already had 52 doses of. 2) Pertuzumab (also known as Perjeta), which is a drug that binds to HER2 receptors and prohibits growth. 3) Taxotere (also known as Docetaxel), a chemo that is more aggressive than the Paclitaxel I received in 2013.  It has the terrible side effects of the "typical" chemo patient: hair loss being the main one, fatigue, and extreme diarrhea.  

If I choose this option, I would receive 6 cycles of these drugs, administered every 3 weeks.  It will take about 4-6 hours each time.   I might have to come into the office to receive extra fluids if the diarrhea is bad enough that I can't keep anything down, to prevent me from ending up in the hospital with dehydration.  

Dr. Fleener thinks this is the best option, as I am young and have an aggressive cancer, which is HER2 positive.  Whenever it comes back around the year mark, that is another sign of how aggressive the cancer is, so we need to be aggressive in the fight.  The effectiveness of this option will be assessed every 3-4 cycles with a PET scan (or CT/bone scan) depending on what insurance will cover.  She hopes to be able to compare with another PET scan, since we already have the baseline results.  

Once we get me in remission, I will continue taking the 1st 2 drugs, the Herceptin and Perjeta for "as long as I'm in remission."  I interpreted this to mean...for the rest of my life AND A LOOOOOONG time!!!!!!

Chemo Option Two:

This would be a drug called Kadcyla.  This is a fairly new drug that is approved by the FDA for treatment of HER2 cancer that has metastasized. It is a combination of Herceptin and a cytotoxic agent.  It works by binding to the  cancer cells and deliver the toxins directly.  Because of this, there is no hair loss or nausea, and it's easier on my body.  The problem with this drug is that it's so new that doctors are still trying to rank the use of it and are still waiting for long-term evidence of its effectiveness.  The side effects would basically just be headaches.  

Chemo Option Three:

This is the least invasive option.  It involves Herceptin with a low-chemo pill called Xeloda. Dr. Fleener didn't talk to me about side effects for this, as I'm sure she doesn't want me to go with the least aggressive option.  

With all three options, I would also receive a bone building drug called Zometa.  It is given with chemo and helps with building bones.  It is often given to patients with osteoporosis, and can help with my case to prevent further damage to my bones and to strengthen them to prevent future fractures.  

Now comes the interesting part.  We need to work with the radiation oncologist, Dr. Goble, to come up with the right combination of chemo and radiation.  If he recommends being aggressive with radiation, I will not get the aggressive chemo right away, but Dr. Fleener would still recommend I start the other 2 drugs ASAP, hopefully next week.  

I asked HOW WE MISSED THIS?  She said she hadn't received any information about the CT scan I had in March, but guessed that the radiologist was looking for signs of cancer in my major organs and might have missed minuscule legions in the bones.  She wondered if we asked them to look again and focus on the bones, knowing what we know now, if they would find anything suspicious.  

I asked about the % of recurrence? We don't have an answer for that until we see how I respond to the chemo. She said, "I have to make it go away first!" If chemo "melts the cancer away," (Dr. Fleener used this imagery quite a few times), that is a good sign.  If it seems to work like it's supposed to then I have better odds at keeping it contained.  

I asked about the % of my chances of living 5 years, 10 years, or 15+ years?  "Do you REALLY want to know?  Patients and spouses come in all the time asking that and they say they really want to know.  Then, I tell them, and they wish they hadn't known."  I wanted to know.  Knowing is half the battle, right?  "The average is 3-5 years.  I'm not saying that's how long you have to live.  I'm just saying that's the average.  All I can tell you is the average, but we don't know now where you will be.  It depends on getting that cancer to melt away.  Young people tend to do better.  We need to see how well you do with treatment and go from there."  

 I asked about restrictions for exercise and diet.  There aren't really any.  She wants me to be mindful of eating a healthy diet, but during chemo, you just need to get down what you can get down.  Stay hydrated.  Drink water.  If all you can get down in liquids, try to drink Gatorade for the calories.  When she told me there were no restrictions for exercise, I was shocked.  "You mean, you would tell me it's okay to run?  I have spinal fractures!"  I'm just supposed to "listen to my body" and do whatever I feel like doing.  And NO HEAVY LIFTING!   

I can stop taking Tamoxifen.  She hypothesizes that my cancer now is probably not ER+, as I've been taking an estrogen blocking drug for over a year now, and the cancer still came back.  We might try to do a biopsy of my bones to check for the receptors of this cancer again to be completely sure were are fighting what we think we are fighting.  In the meantime, because there are negative side effects of Tamoxifen, the benefits do not outweigh the side effects.  DELETED! 

I asked about the use of essential oils, since I've already received several questions about that.  Dr. Fleener said she is not a 100% believer in the use of essential oils.  She said if I want to try some for certain benefits of relieving side effects, that would be fine, as long as it is applied topically.  Even though some citrus essential oils have some positive effects when mixed with water, since chemo (and radiation) can irritate my esophagus, we don't want to add more acidity.    

I made an appointment to meet with a doctor to plan a time to put in another port and the tentative plan is to start one of my chemo options next week.

Next, I walked to the other side of the building to meet with my radiation oncologist, Dr. Goble.  He was able to get me in and have a good consultation.  Last week I met with the semi-retired doctor, so Dr. Goble had read through all the notes, but hadn't had a chance to really study all of my scans.  He did say that the most likely area of focus for radiation would be T7 & T8 (thoracic area of my spine) because those are the locations of my compression fractures, the highest areas of pain, and the most obvious areas of legions.  In order to start radiation, I have to have a "marking session," a 30-45 minute assessment to determine and mark the exact location of my radiation.  Using a CAT scan of the area, they will focus on the correct spot and mark it with---TATTOOS!  I'll have 3 more tats to add to my cancer collection soon, one in the center of the area to receive radiation and 2 leveling marks, to help with the correct placement every time.  

My treatments will most likely be 2-3 weeks of 15 minute sessions, Monday through Friday.  As often as possible, they try to give me a set radiation time, so it's easy to remember and schedule around.  Then, once a week I meet with the doctor to monitor my progress and answer any questions.  They will follow my blood counts closely, mostly checking the WBC and platelets.

The side effects of radiation are minimal.  I can have some pain and discomfort in my esophagus and possibly difficulty swallowing and eating.  I will have some mild fatigue.  The severity of these side effects could be magnified by the combination of aggressive chemo, so Dr. Goble and Dr. Fleener will work together to come up with the best option to balance out the side effects and to get the best results.  

Tomorrow I meet with Dr. Naqvi for a second opinion and more information overload.  I will get copies of all of my reports and get a disk of all of my scans, so we have something to compare further scans to. 

I am leaning toward the aggressive treatment.  I don't want to go through all of that again, but I am not afraid of it.  I feel peace in knowing more information today than I've known all week and to have a plan, even a fraction of a plan, to move forward.  I do not like hearing the average life span of 3-5 years, but as I've told several people----I've always been above average.  

I am a fighter.  I will not give up.  I will exhaust all options.  And, in the end, it is all in God's hands.  He will use doctors to help me, but none of us know when our time is up.  All we can do is keep trying, keep pressing forward, enduring our trials well, and keep praying to know which paths to follow.

I leave you with an inspiring message of hope that came my way today.  Whatever you are dealing with, don't quit!  Keep trying and praying and carrying on.  You will not fail.