"Hallelujah" (Psalm 150:1): two Hebrew words, generally rendered as "Praise (ye)" + "the LORD"

What more can I say but thank God for seeing me this far.  The Kadcyla is working.

Blank Park Zoo in Des Moines

  

My tumor markers dropped 13 points, not a ton, but just enough to demonstrate that it is working.  To all the hard working breast cancer researchers out there, all the stage IV clinical trial participants (and their families) living and passed, the doctors, nurses and technicians, thank you for paving a road for me, I am sorry that I was so impatient and frustrated with waiting.  I will try and change my perspective on "my" stage IV breast cancer to one that "is" being treated as a chronic condition.  No more whoa is me, this is just something I live with, this is not the end, I have a chronic disease of the bones.  I hope all my breast cancer sisters can get to a point where the diagnosis of metastatic breast cancer is no longer screamed but chronic disease is whispered instead.  I look forward to a world where women say... oh yeah, I had that, where statistics don't rule your life and therapies are accepted as a routine part of life. 

Part of life, my life, your life, many lives- I hope one day we can all overcome our fears.

 

 

 

 

 

 

 

 

Cheers!

At the Wilderness in Wisconsin Dells

Treatment #2 down!

So after a surprising increase in my liver enzymes and other lab tests, my tumor marker did increase 30 points after my first dose of Kadcyla (from 350 to 380), which means basically nothing.  All put together the doc thinks that this could be part of a good response, but all in all, if I feel good- go with it.  We won't know if this therapy is working for a few months, but based off how I feel- its amazing. 

I am totally off Tykerb, and am able to digest food, without having to lay down after eating, and I can  zip my pants after a snack.  Plus I can eat ice cream and yogurt again without Montezuma's revenge visiting me the next morning.  I feel so much more comfortable.

It is also wonderful being off the faslodex shots, they were such a pain in the _ss!  I did try jogging a little bit after my first dose (about a week in), and it hurt pretty bad, I had to stop and walk.  My whole hips were tender, and my gluts (where the faslodex shots were done) hurt, and on top of all that the new spot on my femur hurts a ton.  But all of that pain goes away when I walk or stop bouncing. 

So life is good.  Today I took Parker on a nice long bike ride (phew) then we went fishing and caught 11 panfish.  Good day.  So now my gluts hurt for yet another reason.  Ahhh the joys of being a pincushion.  Yesterday my infusion went totally uneventful, just long.... as I am still my doctor's only patient on this drug and possibly the first patient at the UI to receive the drug.  Because it is so new, it takes forever to enter all the dosing and insurance info into the computer, so I waited 2 hours with my i.v. in until the drug was finally delivered to my chair.  Oh well, it was worth it.

First patient to receive Kadcyla!  Whoohhoooo

 

A new adventure

First I want to say thanks to my wonderful husband and family and friends who have supported me through these turbulent times of switching therapy.  My doctor completely agreed with my desire to start TDM1/Kadcyla last Tuesday, and as of today I have been on it for 5 days, without too many problems.  It was a very long first infusion, wait for the doctor's room, then wait for the doctor, then talk with the nurse, then talk with the doctor, then schedule next appointments, then wait for a chair in chemo, then start an i.v. and wait for the pharmacist to mix the drug, then hook me up...... and finally infuse for 90 min and monitor for another 90 min to make sure I don't have any adverse reactions. 
Phew..... long day.  But next time (in 3 weeks) it will take probably half that time as they will infuse the med faster and observe shorter.

No immediate reactions at the clinic.  At home I've noticed my nose has been running more, my pain is fairly constant (but I alternate tylenol and ibuprofen which keeps it in check), and I have some burning gastritis like pain in my epigastric (inferior to the sternum) region, which could be an ulcer, irritation from the pain meds, or a mild reaction to the chemo.  Called the on-call oncologist just in case and increased my acid-reflux blocker.  At first I worried that it was my liver, as liver toxicity has been reported with this drug.  Unlikely.

I have been fortunate to start meeting some survivors as of lately who've inspired me to let go of my fear further.  I am astounded at their resilience and I hope I can inspire others with my many years of survival story too. Through Relay for Life at my church, I met a man who'd had testicular cancer and lymphoma (stage IV) 19 years ago!  I'd have never guessed- I love hearing from people like this, even if it is just a few years, it inspires me so much.  So if you too are a survivor, please post a note saying how long you've dealt with your disease and how you've defied the odds. 

As Mother's day rolls around I am reminded of my own mother who defied the odds with a similarly horrible disease, amyloidosis.  And how she overcame all the negative emotions and established a new normal which was unpresidented and lived a full ten years with the beast.  This is a disease that is often caught late, and patients usually die within a year of diagnosis.  Her diagnosis was not early, but her will was unrelenting, and she endured a bone marrow transplant, multiple chemotherapy cocktails, put up with pulmonary edema, congestive heart failure and ultimately complete kidney failure and finally dialysis.  She passed away very peacefully at home two years ago on May 4th.  She was well loved, and she and I had many in-depth conversations about live, death and our shared faith prior to all that.  We had a great relationship, and she taught me alot about living with a terminal illness.  Thanks Mom and Happy early Mother's Day.

4 generations of Buck-Schwickerath-Ness's

 

Doctors Ness and Ness beside the "Ness" conference room in 

honor of Mom's service to the clinic

This ride may be over (for now)

It has been so long since I've felt like I needed to update anyone on my health- basically over the past 2 months, I've bounced around with pain and my tumor markers were pretty much unchanged (still in the 300s however).  The pain was worst in my femur, a new hotspot apparently.  But thanks to swimming, ibuprofen and taking it easy, it hasn't been much of a problem.  But jogging was out.

I had my most recent labs drawn on Thursday last week, and the markers have now increased 15 points- which is basically mild progression.  I will receive some sort of chemo tomorrow, it will probably be my choice- do I want to try the newest and best stuff? or should I wait one more month?  I think due to the pains I've been having in my femur, the desire to avoid yet another big dose of faslodex (in the butt), and it being summer, a time to be out, enjoying life and pain-free, I'm going to call my doctor's office and request to be started on TDM1/kadcyla asap.  I am ready to give it a try.  Its scary jumping off, but I know God will catch me and ease me into a landing.  I still get to keep my hair and should have less side effects than I currently do. 

You may be thinking, well duh, no brainer- take the new medicine.  Well its not that simple, there is a good chance the new medicine will work better than the current one, but there is also a substantial chance that it won't work at all, and the cancer could grow wildly in just the first month of treatment.  In which case I could loose months of the clinical stability I have now, as we always give new drugs a few months to see if they are working.  But, I have decided that don't want to just limp along anymore, I want to jump!  I feel very strongly that God, thankfully, has set this drug before me, and all directions point to "go". 
Thanks for coming with me on my journey.  And prayers go out to all those struggling with their trials and challenges.

No changes this month

In my last entry I was trying to decide if I could read my body and "know" if my current therapy was working based off how I felt, when pains came and went.  My doctor had already shot down my hope that the 30% increase in tumor markers from the previous month was probably not a tumor flare, and it was likely progression in the bones- but we had to give it one more month to know for sure.  I didn't agree with him, I had this gut feeling that this therapy was working as my bone pain was significant early on, and then suddenly went away.  

My sister and I trying on bridesmaid dresses

Well it turns out, I do know my body!  My tumor markers fell 1 point this month, suggesting stable disease for now.  I didn't actually meet with my doctor to say "I told you so", because of the snow storm and my lil' man came down with pneumonia and I might have had influenza- so it worked out perfect that we discussed my numbers over the phone and he agreed that we need to stay on this therapy, and keep TDM1/Kadcyla in our back pocket. 

Guess who loves trains

I was thrilled!  As much as I want to be on the best drug out there, I know that I need to stick with each therapy as long as possible to ensure I get all the benefit, and don't run out of options too soon.  My insurance even sent a letter saying I was approved for the 100K/year drug, phew!  So live is great! 


I've started Parker in a daycare/preschool program 2 days a week, and I'm using part of this time to  swim laps (low impact, not weight bearing) to help with my joint and bone health.  I still have joint pain in the days following my injections, but the swimming helps. 

Parker in his snow fort

Thanks to all my friends and family for all your prayers- I know God hears them and is answering them in due time. 

I could not be happier, no one can bring me down now

After seeing my tumor marker had jumped 80 points in 3 weeks, I rejoiced- because I'm guessing that this means this therapy is working.  A month ago, I had horrible pains in my bones, I was taking tylenol and ibuprofen around the clock- I even took a narcotic at night so I didn't wake up in pain.  I thought for sure the cancer was spreading.....then like magic the pain disappeared.  No pain meds needed.  ?

I started exercising, and was feeling good for a good while.  Then a surprisingly intense muscle spasm  landed me in the ER, and was hospitalized for a day so I could get off the i.v. narcotics it took to control the pain.  But X-rays, CTs, and MRI all said it was a muscle spasm, no blood clot, no pinched nerve, and completely un-related to cancer.  Thankfully, family was able to rush in to watch Parker while I rehabilitated my weak leg, and weaned myself off all pain meds back at home.  Once again, I am pain free. 

The MRI did light up a bunch of spots, some could be active cancer, some could be healed cancer, and some were completely new.  That did get me down for a day, but then I saw my tumor markers, 30% increase, just like the last time I had a good response to a therapy!  I was so relieved and overjoyed, I then concluded that the pains I had from a month ago, must have been all those little cancer cells dying, inciting inflammation in my bones, and my immune system cleaning up the mess.  I could see the macrophages before my eyes.

My doctor didn't even believe the tumor markers, he thought it was probably increased due to progression, not a response to my therapy.  He said it was alittle late to see a flare like this, indicating cancer death.  I disagree.  He has been wrong before, and I know he is wrong again. The real test will be again in 3 weeks what the markers do.  If they plummet, then I know my body well.  If they continue to rise, I will be one of the very fortunate women to receive TDM-1, in the beginning of March.  No side effects with that one, every three weeks, I get an infusion- and we might even pair it up with pertuzumab, which my insurance provider already approved for me!  Wow two brand new anti-Her-2 drugs, and no hair loss, no side effects, and no more anti-hormonals (for awhile, maybe even a long while).  And insurance picks up the tab (we're talking $1000s/month). Either way I win, and cancer looses.

In other news, life could not be more perfect.  I may not be able to have more children, but I have the dearest, sweetest, most compassionate and cuddly little boy anyone ever had.  He kisses all my owies, he prays that Mama's medicine keeps work'n, he hugs me when I say I miss my Mommy.  Then to top it off, I have a husband that comes home from work and adores me.  He does the laundry when I'm sick with a cold, he takes me on a date when I ask, he supports me in every way possible.  These are things I never would have recognized had it not been for this thing called cancer.  So for altering my life, refocusing my goals, and bringing me closer to God, cancer, I say thank you. 

Clinically stable?!?!

So last I wrote, we were just starting Faslodex (2 big shots in the gluts) every month and continuing with Herceptin & Tykerb.  Since then I have had 2 more doses of Faslodex, each one being less painful than the last.  I did develop a nasty rash on my hip after the first dose, it was oddly only on one side and was almost the size of my hand, but it cleared up by the time my second dose was due.  After the first dose I thought I was doomed to a life of joint aches and insomnia, but over the past month- the joint aches that would keep me up at night, prevented me from exercising and made me whine about getting up off the couch have all but disappeared!  For the first time since I started anti-hormone therapy, I have no pain (at least not today).  The joint aches were manageable with 1200 mg ibuprofen, which I split into two doses, am and pm, but it was a pain nonetheless. 

We put our little man to work this winter.

At this month's doctor visit, he was not overly optimistic about staying on this therapy for very long, as my tumor markers have once again climbed from 231 to 256, but he felt comfortable saying that there was probably no major progression.  All my other lab results looked about the same, and then he said the words I will never forget.....he said I am clinically stable.  I was like "what! , how can I be considered stable if my markers are going up"?  He explained that biochemically, one test shows a very mild change (esp when tumor markers can be in the 100,000s), and I have no pain or other symptoms, so biochemically I am mildly unstable, but clinically stable!  Just hearing those words was music to my ears.  I always hung my hope and prayers on a NED (no evidence of disease) diagnosis, but this is just as good!  Who cares what the tests say- I am well!  And I guess I've been this way for many many months, but no one ever gave me a positive label like this before.  Instead I'd always been labelled as mild progression, or stage IV and incurable, metastatic- scary terms that had no sunny side.

No joke, he shoveled the whole drive!

We plan to give this therapy until the end of Feb, to see if it is working.  At which time, I will either continue on this therapy (if it is working) or try the (hopefully) newly FDA approved drug, TDM-1.  TDM-1 is in late approval stage by the FDA, and they've been very slow to get it into the mainstream, the deadline to approve or reject is Feb 21st.  We all expect it to be approved, but one never knows. 

So with this new view on my disease, I am more optimistic for a future, and want more than ever to celebrate life.  It may be a cold and dark winter- but our house is filled with nothing but smiles and joy.  This Christmas was a real blessing to us, and a good reminder of everything that God has done for us.  I am so thankful for my church, my mom's group, and all our wonderful friends and neighbors who have supported us in so many ways.

Well....shoveling snow can have lots of meanings.

Parker at Tessa's birthday party.

I wish you all many blessings in this new year, and hope that by reading my story and others like it, you will realize just how blessed all our lives are.