LOTS of Stuff to Do Pre-Chemo

On Tuesday, October 30th I met with my oncologist for the first time.  I was not sure what to expect, but I was not expecting to be there for 2 1/2 hours.  I was told so much information that I felt like I was on brain overload.  It has taken several days to process it all and now I am ready to share.  Good thing my smart husband recorded a lot of the appointment on his phone.  There is no way I would have been able to remember it all.

So here is a summary if you are interested:

- I will lose my hair...no way to avoid it.  It will start falling out around the 2nd treatment. I guess I will be a bald beauty :)
- He ordered  A LOT of tests/procedures/etc.  He said he does not normally do such extensive testing before chemotherapy, but I am young and feels it is necessary for my case.  He wants to make sure the cancer has not spread beyond my lymph nodes
          - PET Scan - I had this done this past Thursday morning.  This was a two hour test.  They
injected me with glucose(sugar) that had a radioactive marker.  I sat and read a book for an hour and
then moved me to the imaging room they took images of 7 sections of my body.  This part took over an hour.  It was pretty uncomfortable to lay that still for that long because of my stupid arthritis and it was crazy cold (even though they covered me in blankets)....but I survived.  This test works on the premise that cancer cells metabolize sugar at a faster rate than normal cells.  Any part of the body that is extra metabolically active will show up as a hot region.  Therefore my brain, kidneys, surgical site, AND CANCER will be hot.  So this test will show if the breast cancer has spread.  He said this test also is very sensitive to GIST too (my first cancer)....so we can see if that is showing up again.  He went ahead and included the brain in the PET scan.  He said it is like looking for fire within a fire, but he said it still can be useful.
          - Brain MRI - scheduled for Monday night (November 5th)....He ordered the brain MRI because you can't count on the PET scan to determine if the cancer has spread to the brain
          - CT Scan - He will order this one after the PET scan results are in.  He will at least do a chest CT so he can look at the axilla (underarm lymph area).  If the PET scan shows cancer in other areas then he will scan other parts of my body too
          - Genetic Testing - He wants me tested for the breast cancer gene (BCR-1 and BCR-2).  He thinks it is likely due to my young age & history of cancer on my father's side of the family.  If I do have the gene he will adjust my chemo accordingly - there are some drugs that work well in this case.  He said he would also recommend having a mastectomy on my remaining breast.....aaarghh.....
          - Blood Work - pretty routine....already done that day
          - Port - I will have a Port surgically inserted into my chest this Thursday.  It is an outpatient surgery using local anesthesia.  This is to give them direct access for chemotherapy.  I could also have the port put in under my arm.  He prefers the chest, but it does leave a scar in a place people will see.
          - Genetic & Chemotherapy counseling - I am meeting with the oncology PA on Thursday.  She will discuss & teach me all about the implications of genetic testing AND explain all about my chemotherapy plan.
          - Referral to Breast Cancer Center - said he will refer me to an oncologist in Seattle (preferably) or Portland that specializes in breast cancer for a 2nd opinion.  He said this is good not only for the obvious reason, but also I could be in a clinical trial if I wanted.  I think it is good to get a 2nd opinion, BUT I do not want to travel for all my appointments/treatments.  That is too crazy.  Portland is an hour away and Seattle is 2 hours away when there is NO traffic.  This particular oncologist is in my local hospital that is 15 minutes from my home....much better for me.

Once all the testing is done & the results are in I can start chemotherapy.  He said we will start either the week before Thanksgiving or the week of Thanksgiving.  He wants me also to be able to heal more from the mastectomy and get my strength back before starting.  We are STILL waiting for the HER-2 results.  We can't pick a chemo plan until these results are in, but he did explain my options either way.
If I am HER-2 positive:
One Option: TCH:   It is made up of three drugs:

• docetaxel (doe-se-TAX-el) or Taxotere® (TAX-o-teer)
• carboplatin (KAR-boe-pla-tin) or Paraplatin® (pair-a-PLA-tin)
• trastuzumab (tras-TOO-ze-mab) or Herceptin® (her-SEP-tin)

Docetaxel and carboplatin prevent cancer cells from dividing and growing, and can eventually cause the cancer cells to shrink and die. Trastuzumab is a new type of drug, called a monoclonal antibody, which targets cancer cells more precisely than chemotherapy drugs.
 I would take all three drugs every 3 weeks for 6 cycles = 18 weeks.  I would then continue on the Herceptin for a year.....yikes
OR
Another Option: AC + followed by Herceptin - this one has a slightly higher risk for heart failure than TCH so I am probably going to pick TCH unless convinced otherwise.  This one would be every 2 weeks for 4 cycles = 8 weeks, plus H for another year.

If I am HER-2 negative:
One Option: TAC:It is made up of three chemotherapy drugs:

• docetaxel (doe-see-TAX-el) or Taxotere® (TAX-o-teer).
• doxorubicin (dox-oh-ROO-bi-sin) or Adriamycin® (a-dree-a-MY-sin)
• cyclophosphamide (sye-kloe-FOSS-fa-mide) or Cytoxan® (sye-TOX-an)

This treatment would be every three weeks for 6 cycles. This one is harsher than the next option.  You have a 4/1000 chance of developing leukemia later.  He does not use this plan anymore, but his partner does.

OR

Another Option: AC:  this is the same as the first option expect you have only 2 drugs (you drop the Taxotere).  He likes this one better. This one would be every 2 weeks for 4 cycles. There is a 1/1000 chance of developing leukemia later.

****DISCLAIMER:  I did my best to take notes....I think I got the info correct.....could have made a mistake.  

During chemotherapy he might stop me from taking my Gleevec (this is the drug I take daily to keep my other cancer from returning).  Gleevec lowers white cell count so my blood count is already low- chemo makes it even lower.  If I keep taking it this could cause treatment delays.  It also puts me a greater risk for infection.  

After Chemotherapy we will discuss radiation.  He says this is very controversial and I will need to get at least 2 opinions, take all the information, and then decide what is best for me.

After chemotherapy I will also start hormone therapy.

We discussed and went over much more at the appointment, but this is the main gist of it all. My oncologist is very straight forward and honest.  He has a very open policy....he called the radiologist and discussed some of my tests on speaker phone in front of me - I really liked that.  He was sympathetic to my plight and just couldn't believe I was on cancer #2. He seemed like he really wanted to research and figure me out.  He claims to be opinionated and pushy (hmmm I think I can relate to that).  I liked him, I think my husband didn't.  But, my hubby said it is my decision and he will support me in whatever I decide (lucky girl). 

I was pretty overwhelmed after this appointment.  I will be happier when all these tests are complete and I know the results - good or bad.  The unknown is the WORST.  The chemotherapy or losing my boobs doesn't scare me too much, but having metastatic cancer does scare me. I have two little kids & a hubby that need me and I need them. I really hope it has not spread beyond the lymph nodes.  There is no cure for metastatic cancer.   

So keep the prayers and good vibes coming.  I truly am uplifted by every gesture of compassion whether small or large.  Don't be afraid to talk to me.  I like discussing how I am doing, even when it is not going well.  It is therapeutic.  I need friends and family like I have never needed them before.  It is o.k. to cry in front of me....this does not depress me, it makes me feel loved.  It is also o.k. to make jokes and laugh about things too.....I could always use a good laugh. 

I am going to keep trying to stay positive and happy.  I am feeling better.  I get more energy each day.  Life is still great.  

You just gotta keep on livin', man. L-I-V-I-N.

peace out my friends - 

The One Boob Wonder

(working on stopping my killer boobs :)