Going LIVE......pray I say something intelligent

Greetings Family, Friends & Guests-
As a member of the Metastatic Breast Cancer Network (MBN), and it being Pinktober, I was asked to do a live interview on KWWL; channel 7 (the local NBC) station about living with metastatic breast cancer (MBC).  As there is not much I can physically do to support other women with breast cancer, this is my big chance to spread the word and debunk some myths about MBN.  I will be airing live on Monday Oct 8th, and am the 5'oclock guest.  Its only a 2 min interview and I will try to post links here and on my facebook page for those who miss it and want to view it later.

For those of you new to my blog, welcome- and I'm glad to share my journey with you.  To get you up to speed on how I discovered my cancer- read my first post "Long story short" and it will cover most of the highlights (or should I say lowlights).

 

Update on my health- I feel great!  But........ tumor markers say otherwise.  Last month my tumor markers were 165, now they are 188- yikes.  But all other lab results are good- most are even normal or on their way back to normal.  So what does this mean, my tumor marker has been climbing for several months now, and I just switched to Aromasin?  Next month we'll make a decision (maybe) to try something new.  TDM-1, a Herceptin antibody hooked to a chemo drug (DM) may be our next choice.  It will be FDA in November- so just in time.  I've heard from cyber-friends that there are little to no side effects with this one, as it targets only the cancer cells that over-express Her-2.  However I would have to stop my anti-estrogen therapy (Aromasin) because they haven't been tested together and could counteract each other.  So I'd be down to 1 "chemo" and as a bonus I would get to keep my hair!  This is great- but unnerving because the scientist in me says that the cancer will have a harder time becoming resistant to multiple therapies simultaneously, and this puts all our eggs in the one basket that is Her-2 over-expression.  We haven't even tested my bone mets to see if they still overexpress Her-2 (fingers-crossed).  But for now- I have no pain and life is good.  I'll probably even take Parker fishing today- when it warms up that is. 

New treatment starts tonight!

I think the storm of emotion is weakening and I am moving towards a better place with my anxiety.  I have come to expect the roller coaster and I know that after bad news comes acceptance, a new normal and (at least for now) a new and exciting therapy.

That being said, I didn't panic at my oncologist's office today- I was immersed in a book to distract myself (Mockingjay, the final of the Hunger Games series).  I sort of expected an increase in my tumor markers, but I was comforted by the fact that last time he said that even if your numbers increase some - we won't do anything drastic and we'd probably continue the same or a similar treatment.  So I was comforted that I wouldn't be loosing my hair anytime soon.  He said my tumor markers went up some and he wanted to switch me to another aromatase inhibitor (to block circulating estrogen from adrenal and fat cells), and he suggested aromasin instead of femara.  So this is a switch from a tiny pink pill once a day to a tiny white pill once a day- and expect the same joint pain from time to time.  I was like okay.... that's not much of a change- I can swallow that and then we made some small talk about other treatments down the road, studies to look forward to and other patients like myself.  Towards the end of the visit, I saw what my tumor marker was on my lab print-out, whoa... 166!  Last month it was 123.  Very pleased with the elusive way he presented my labs as he knows how fixated I become with them. 

I'd previously viewed my immediate lab results earlier that morning at home online and saw that most of my liver markers were good but my lactic acid dehydrogenase was increased, together indicating a healthy liver but some sort of inflammation.  This lead me to believe that there was mild bone progression, so I wasn't totally shocked.  My alkaline phos. was still good so my bones must not be that upset. 

After receiving (once again) my doctor's assurances that this small change won't affect my survival- I was relieved and tearful and gave my nurse a big hug.  I then went to chemo and got my herceptin and per my request, doc sent over one of his older patients with bone only disease- and she was such a great inspiration to me!  She's been bone only stage IV for 3 years and is only on herceptin!  Being that she is older, and post-menopause, I guess the doc doesn't feel the need for any anti-hormone therapy.  Wow, she and I have the same exact subtype- Her-2+, ER+ and on very different therapies and very different successes.  The doc never felt the need to perform surgery or radiation, as she was diagnosed stage IV from the start.  I look forward to hearing much more from my new friend. 

Daddy loves his little buddy boy

Parker getting ready for an 1880's train ride in Hill City, South Dakota

Brave little Parker sticking his head out of a moving train!

What trip to South Dakota wouldn't be complete without some target practice.

Fishing with Mom is a weekly activity.

Thanks everyone for all your thoughts and prayers, I will check in again in 6 weeks after my next oncologist appointment. 

Chemo-vacation continues!

So despite all my worrying and insomnia, my tumor markers dropped 5 points this month!  I was so relieved to hear they didn't increase.  It might be as a result of removing the ovaries, in which case they should continue to drop, but the doctor wasn't positive.  He said that even if the numbers climb slowly over months he wouldn't change therapy because I feel good and am tolerating this therapy so well.  So I guess he'd prefer mild progression over switching therapies to one that potentially doesn't work at all.  This is alittle hard to swallow but the scientist in me realizes that a few months isn't going to change whether a therapy is effective against my cancer.  And for all I know, there are already tumor cells in my liver and lungs- and my immune system plus the chemo cocktail is keeping them in check.

We talked about my anxiety over my tumor marker "scores", and he really wants me to divorce myself from it and judge my disease on how I feel.  He was very impressed that I have no pain and am jogging and biking again.  So he sees me as a victory already.  The only other woman I met with stage IV bone only metastases had significant pain which affected her quality of life.  We decided that as long as I continue to have no symptoms, we will move my appointments to every 6 weeks instead of every 3.  I will still go in for Herceptin every 3 weeks and continue to take the oral anti-hormonal and another oral therapy (Tykerb), but no blood tests to worry about and keep me up at night for SIX WEEKS.  It makes so much sense to me- I'd rather not know every little move the cancer makes, especially if he's not going to change therapy unless the cancer makes a big move.  He wants to keep TDM-1 and pertuzumab in our back pocket for things to try when our options become more limited.

In other news- Parker is just getting over croup and my sister welcomed a beautiful baby girl into the world.  I'm so thankful for all the prayers and well wishes and I feel so fortunate to have you all along on my journey.  I'm relieved to not have to face cancer alone.

Waiting for the next one

So despite having a great summer- fishing, swimming & biking in this hot weather, right now I'm frozen with fear waiting to learn what my rising tumor markers (again) mean.  Since surgery, my tumor markers hovered around 100, then up to 107 and now the latest is 129.  Yikes. I tried to push my oncologist to switch treatments after I saw the 129, but he said he wants to wait one more month before we do anything new. 

Today I called his office asking for an earlier appointment- as my hip (right over the first bone met) began hurting again. I'm hoping that I can convince him to call my insurance company and get them to pay for TDM1 off label for me.  It was only recently approved by the FDA, and from what I hear it still isn't official (?)  I've heard rumors that TDM1 is like 10,000/month, but thankfully insurance companies have to pay for it after the FDA approves it.  To use it as it was (or will be) FDA approved would be to take it with Taxotere (bye bye hair), but getting him to give it to me off label would mean he could combine it with any therapy.  TDM1 is a herceptin antibody with a chemo agent attached to it- so it is highly selective and highly toxic.  Currently I am getting herceptin, and taking oral tykerb and femara and no actual cytotoxic chemotherapy (which has been nice).  

Although I know waiting one month isn't going to change whether my cancer responds to TDM1- I am paralyzed with fear that it could jump to my brain, my liver or my lungs in that amount of time.  Plus I'm shocked that the anti-estrogen therapy hasn't been all that effective. I know by calling his office today- he'll probably set me up for another PET scan, which is torture on the nerves, but I'm willing to do that if it means I can get TDM1. 

Long story short, I'm in limbo- I think my chemo vacation is over and I'm waiting for the "go ahead".  Please say a prayer tonight- that my doctor finds "the one".

Our futures are never certain

Its been many weeks since surgery and I'm feeling 100% recovered- I've even restarted jogging and am enjoying it.  Back pain is completely gone which gives me such reassurance that the cancer isn't progressing.  My oncologist said that the anti-hormonal therapy I am still on (to decrease estrogen from other sources in my body) can cause significant joint/back stiffness and often goes away after a few months!  

Since surgery I have had two cycles of herceptin, and the first month my tumor markers dropped, but this month they are slightly increased.  Although I'm discouraged by the second month increase, I'm trying not to panic.  Perhaps they will fluctuate in the 90- 110 indefinitely.  This would be a success, although not the idealistic under 40.  Plus I'm thinking that it really doesn't matter what the numbers and cancer do in the short term, because with the right therapy (ie. pertuzumab and TDM-1, coming in 2013 hopefully) it is possible the cancer would regress even more and those little increases in the middle won't make any difference.  I'm still hopeful for a cure one day, but I'm satisfied with stable or uncomplicated disease.  I'm not even going to think about the possibility of loosing my hair or changing therapy right now- I'm not going to waste my time worrying. 

Its a Thomas Birthday!  Ignore the #1, that is Thomas's number.

Parker loved his birthday cake.

I had lots of fun decorating for Parker's party.

In other news, my sister's baby is due in July and I am so excited for them.  Plus I think being an aunt will be wonderful.  Parker had his second birthday parties- one with the family and one with friends- and it was wonderful.  He really enjoyed the cake and loved the company.

Surgery went well

My wonderful family at Chad and Lynsey's wedding

Surgery went as expected today, getting into the OR around 9 and leaving around 12, actual surgery time was only about 1 1/2 hours.  No complications and my incisions are very small :)  So relieved to have this behind me, and I'm glad I had it done- it is just extra assurance.  Added bonus of no nausea and very little pain!  The narcotics are keeping me very comfortable, but I doubt I really need them. 

Procedure was actually not robotic, as I thought, rather it was strictly laproscopic and I have 1 larger incision near my belly button (1 cm), then 2 more on either side near each ovary (5-8 mm).   Oddly I have some pain in my right shoulder due to the phrenic nerve getting irritated by the air they used to inflate my abdomen.  But that should go away soon.  

My doctors and nurses were really great and I was thrilled they let me go home early afternoon!  My dad will be staying with Parker and I tomorrow, and Patrick will return to work for a day and then he can spoil me all weekend.  I have so many wonderful friends and family- thanks for all your prayers and support.  

Kristin

Parker in his new toddler bed & a very proud Mama.

What a big boy!  And a cutie!

Slow and steady wins the race

Very sad news reached me on Monday, a fellow breast cancer warrior passed away. Though we'd never met, she and I exchanged a few emails- and I found her optimism infectious. She too was very young and got only 4 years after her stage IV diagnosis. There is no rhyme or reason why some people live and others die. I'm just sorry that Courtney was part of the latter. Thanks for your wisdom, Courtney.

On the heels of such sad news, I got word that my tumor markers are continuing their gradual decline and I continue to experience little in the way of pain or side effects! I have decided to proceed with the surgery to remove my ovaries and thereby decrease the amount of estrogen feeding the cancer. April 26th is the big day, and I'm sort of excited to have that done - so I can move forward. It was a very hard decision, but I know its the right choice.