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

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.

Big news and time to celebrate

First I want to say how grateful I am to all of you for your support and friendship. And although things are looking slightly less dismal for me, I know that a great many others continue their battles and I pray that God will answer their prayers for healing too.







At my oncologist's appointment on Tuesday we learned that the anti-hormonal therapy is WORKING, and my tumor markers have dropped from 145 to 110, about a 20% decrease! Thank you, thank you, thank you, thank you, thank you. Doctor is very happy and thinks I could expect this therapy to last up to 5 years! Of course in some women, this therapy lasts only a few months- so I still have my fingers crossed. When this one stops working, he would switch me to a different one... and on and on. Ultimately the cancer will probably outsmart the anti-hormonal therapies and it will learn to grow independent of estrogen, at which time we would go back to traditional chemo (bye bye hair). But if that is 5 years+ down the road, who knows what new chemo will be available then? Maybe new radiation or immune therapies will come down the pipeline to me.














The next step will be to remove my ovaries, which is the major source of estrogen, and make me post-menopausal. Will schedule that in a few months. So far I haven't had any bad menopause symptoms, a few hot flashes, but very very very manageable. I will continue to take femara (to block estrogen from adrenal glands), my tyrosine kinase inhibitor (Tykerb/lapatanib for Her-2), and get i.v. herceptin (antibody to Her-2) every three weeks, but then I won't have to get the painful anti-hormonal implant (Zoladex) every couple months. Doctor thinks that I could stop the Tykerb, since I'm already picking on the Her-2 pathway with herceptin, but the scientist in me really likes the dual pathway inhibition, and Tykerb is much more likely to pass through the blood brain barrier than herceptin, and prevent those nasty circulating tumor cells from setting up shop in my brain.

One word of optimism, if my doctor thought I wasn't going to make it 5 years or more, he wouldn't recommend the surgery (as surgery negatively affects quality of life during recovery), but since he thinks I have a future, he thinks the surgery is a good investment.

Coincidentally, we planned a trip to Playa Del Carmen (Mexico) this next week and I can't think of a better way to celebrate my future and say "hasta luego" to cancer!

Too soon to tell

Doctor's appointment yesterday went fine, in sum- it is too soon to tell if the anti-hormonal therapies are working.

I had a moment of panic when first his fellow came in and showed me the tumor markers, once again elevated from 125 to now 146- for the next 20 minutes my world came crashing down again as I assumed that 21 point increase meant the therapy was not working and the bone mets were not ER+ like the lymph nodes back in 2010. I had put so much hope into this new therapy I forgot that when changing therapies, it does take a few months to see the tumor markers reflect a success or failure. Finally my doc came in and reminded me of this. And once again, my world made sense, at least for another month. We talked some more about my next options- he really likes the idea of the oophrectomy (to remove my ovaries), if we can establish that the bone mets are estrogen dependent. I got my herceptin infusion and left feeling content.

In other news, I am going to be an aunt x 2 in July, as my sister and sister-in-law are expecting! So I feel good knowing that Parker will at least have some cousins his age (if he doesn't have any siblings).

Thanks for all your prayers and support!

Answered prayers

Got a call from the oncologist's office last Tuesday- amazing news actually. Dr. dug up my lymph node samples from last Feb. and requested that they be tested for estrogen receptors. Unknown to me, the lymph nodes were never tested for receptors, only for the presence of cancer and I had 4/12+ lymph nodes. The only tissue that was tested for receptors was the original biopsies of the breast tumor itself. And surprise surprise the cancer in the lymph nodes was over 90% positive for the estrogen receptor. Whether this was a different cancer altogether, or whether the original cancer mutated to be ER+, I will never know. And a final possibility is that the original testing was incorrect due to human or technical error. At first I was hugely excited and felt overjoyed at the idea of starting anti-estrogen therapy if it would buy me some more time.

Then the reality set in that in order to kick this cancer, I have to sacrifice my ability to ever have children again. This may seam like a trivial thing to most, obviously I want to live and beat this, but I always had the hope that one day I could be cancer free and have more children. Not to mention I will be sent into permanent menopause, complete with hot flashes and all the other ailments women complain of. As a woman, this is a big price and I really hope that this price fits the bill and sends the cancer into remission.

We talked about saving eggs, but the process would induce alot of female hormones, including estrogen- so sadly, that option is out. So tomorrow morning I will be starting my anti-hormonal therapy along with herceptin, tykerb and xgeva. The anti-hormonal therapy includes oral Femara and then a subcutaneous shot of Zoladex. If this therapy works, I will probably look into having my ovaries removed which has alot fewer risks in the long run. Wish me luck, and thanks for all the continued prayers! Pray that this is the one!

Welcome to 2012

Shortly after Christmas I had my PET scan and blood work done. I thought it would be bad because my back had been hurting more than usual. Although my tumor markers were only slightly elevated from last time- now 114, the PET scan showed 2 new spots in my pelvis, my tail bone spots had gotten brighter and the vertebral mets were variable. Some had gotten smaller, but some had also gotten bigger. I didn't ask to look at the scan this time, I think the more I know, and the more images I have of the cancer, the more anxious I feel moving forward. Right now all I know is that the cancer mildly progressed, but I have very little pain and live a completely normal life.

Doctor thinks the Gemzar and Carboplatin was no longer effective and we need to find a better combo for me. After some discussion, we decided to try going back on oral Tykerb, and combine it with i.v. Herceptin. I was very excited but also quite nervous- I am now not on any true "chemo", now just therapies that block the Her-2 receptor signaling. I was excited because I know my tumor markers dropped within the first month after being on Tykerb (with Xeloda) last time, and Tykerb was tolerable and oh yeah- Tykerb is oral, so no i.v.s for that one. I've been on and off Herceptin for almost a year now, so its nothing new- and has no side effects. Tykerb, like I said is tolerable- but challenging. Tykerb causes terrible diarrhea, and this forced me to modify my diet (no milk products) to manage the GI issues. But like last time, once milk products were cut out, I did just fine- just gonna miss my ice cream. I also know that women can be on this therapy for a very long time (years even).

The last thing the doctor brought up was possibly biopsying a bone met to check for hormone receptor expression. My primary tumor long ago was not responsive to estrogen or progesterone, but it is possible that the mets would have mutated to being positive. This is huge! What a concept- if they have become ER+ or PR+, I would have a whole new angle in this fight. And typically women with ER or PR+ cancer do better overall, these are the ones that live decades with their cancer. Sadly, however it would mean I would go on estrogen suppression, go through menopause and never be able to bear children again. The doctor said that my bone mets are behaving differently than typical ER-/PR- cancer. He said it is far more frequent to have ER+ bone mets that stay localized to bones, whereas the ER- ones will more often jump to other organs right away. So this little observation has me pretty excited!

No plans to start tamoxifen yet, we will wait and see how the Tykerb and Herceptin goes first.