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.