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. 

A new pain in the ass ;o)

Great doctor appointment yesterday, not so fun "infusion" however.  

Patrick and I sort of thought the tumor marker would level off and become stable, based off a rough graph Patrick put together at home- but (as a biologist would expect), biology does not follow a mathematical formula, and the marker increased from 308 to 330 in 3 weeks.  So it was time for a change.

In previous conversations with my oncologist- we'd planned on starting TDM-1 next, but sadly it is still in the FDA approval process.  And it looks like its release date won't be until Feb.  With a sense of peace, maybe from my mother's spirit being present or acceptance of God's will, I didn't panic when I got the tumor marker number- and calmly listened to my doctor's next move.  He was happy that I hadn't had any new problems, my lungs sounded good, no pain (other than my achy bones & joints), no headaches- and he thought we could try a different anti-hormone therapy until TDM-1 made its way to me.  I was pretty happy with that idea, as I feared he'd suggest a new cytotoxic (hair loosing) chemo combo.  Then he hit me with the bad news, it was going to be a pain in the ass..... literally.  This drug "faslodex" is exactly that, 5 ml shot in each buttocks every 2, and then every 4 weeks.  It really wasn't too bad, like a really drawn out flu shot on each side.  Butt....the really great part about this drug is that it isn't supposed to cause the joint aches & stiffness that have been killing me for almost the past year.  The aches and pains respond well to motrin, but I've had to take it around the clock, and the pain would still wake me up at night.  It felt like I had to do 5 min of stretching for every 20 min of sitting- and even then I still had pain.  Granted I would/will put up with all of that to live, I am super excited that this Christmas I might be limber and light footed!

It has been a day since the faslodex shots, and I'm still pretty achy plus the injection sites are a bit sore now (bruised).  I am excited nonetheless about this therapy and looking forward to putting cancer out of my mind this holiday season.  We will still continue my other drugs, intravenous herceptin (every 3 weeks) and oral tykerb at home- but now I have one less pill to take at night.

I was pretty proud of myself for not getting all worked up over the news- maybe I am learning/growing, I'm trying very hard to view this as God's battle not mine, and doing my best to be patient while he figures out my next step. This Christmas is certain to be better than the last, being that it is further from Mom's passing- and everyone is moving on with their lives.  We will be in Wisconsin for a weekend and then in Newton for another and for the first time ever we will wake up Christmas morning in our own home just the three of us!  What a treat!

We feel so very blessed and wish you the same,
Merry Christmas

They are just numbers

Met with my oncologist yesterday- somewhat disappointing news, my tumor markers are continuing to climb from 188 to 202.  However all my liver tests looked good and other blood work looked healthy- so I feel pretty confident that the cancer is just bouncing around in the bones, growing here and there and maybe spreading to some new bone spots.  But its steering clear of my liver, lungs, brain (we think).

I've been on aromasin since August, so only 3 months, and the trendline (yes I chart my lab results) shows that the tumor marker increases are lessening.  So best case scenario, they will level off soon and maybe even start to fall- but we are only going to give this therapy 3 more weeks.  So yesterday I got my Herceptin, and I will see him again in 4 weeks wherein we will get another set of labs and decide what to do.

My sister and my niece with me, Parker and our Dad

My niece, Baby Liz

TDM-1 (Herceptin linked to a chemo agent) should be approved within that time-frame and that will be our first choice, as it has no side effects and is very easily administered i.v..  I would get to keep my hair!  Second choice would be Pertuzumab (another anti-Her2 antibody therapy), which is only FDA approved when given with herceptin and a taxane (which would for me be abraxane- and could cause me to loose my hair).  Abraxane has some nasty long term side effects like neuropathy- loss of feeling in toes and fingers, but last time I was on it- I had no problems with that.   Not sure if I could continue the anti-estrogen therapy on either combination, and each is so fresh off the FDA press that there is no way to predict whether I would respond or not.  Or how long I could stay stable on such therapy.  Either of these therapies (without insurance) would cost >10K/month!  Thank God for private insurance.

Stay the course

Great infusion today!  Still on i.v. herceptin and my anti-estrogen oral drug and oral chemo- same as I've been on for a few months now.  Biggest complaint I have is the joint aches from the anti-hormonal therapy- but ibuprofen really takes care of that. 

No doctor's appointment today- so no news on what the cancer has been up to in the last month, but it can't have done anything too horrible as I've been feeling great.  Not much to report, thankful for every day. 

Great article on Pinktober

Friends, 

I highly recommend this article and want to propose black ribbons for metastatic breast cancer awareness- because there is nothing pink about stage IV cancer-

Pink stands for prevention.

I want black to stand for battling.
 

http://todayhealth.today.com/_news/2012/10/11/14346793-pinktober-ignores-breast-cancer-patients-who-cant-be-cured-some-say?lite

Follow-up on interview

Friends and Guests,
I wanted to follow-up with my interview, as there was so much more I wanted to say but I forgot or ran out of time.  Oh and yes that is my real hair ;)

First off, cancer doesn't discriminate based on age, race, education or family history.  Everyone is at risk- but lets face it....we're all dying anyway.  I had no family history and was perfectly healthy prior to my diagnosis.

When I said stage IV is the only one that kills, I was trying to suggest that stage IV needs more attention and research focus.  Even when breast cancer is caught early (stages I-III), and women are "cured", 20% will become metastatic down the road.  No one is cured until they die of something else.  There are few advocates for metastatic disease because WE KEEP DYING!  We need to spread the word that early detection does NOT mean cured- and although research on metastatic disease is complicated and costly- it is an area that needs more attention. 

All cancers are different and some metastasize early and rapidly others are slow and lazy- everyone responds differently to cancer therapies AND absolutely NO ONE fights any harder than anyone else.  Rather they had a different type of cancer that responded to their particular therapy. 

Mammograms can work- but aggressive cancer can grow from nothing into something under 1 year too.  It is my opinion that mammograms catch a more lazy and treatable form of cancer. 

Here is the link to my interview:

http://www.kwwl.com/story/19767633/eastern-iowa-woman-speaking-out-about-metastatic-breast-cancer