Health in 2014

Happy New Year!

I have to say that it is nice to eat healthy, be sober and exercise regularly. Then when people ask you if you have any resolutions you don't have to stretch to anything too demanding or pie-in-the-sky. What I would wish for more than anything in 2014 is for great health. My goal is to become NED, which is an acronym for "no evidence of disease".  Since my last post I have just stayed very busy with life, the usual things plus the addition of holidays, hanukkah and Thanksgiving that bled into Abby's birthday celebration at school then our trip to New York and then Leo's birthday celebrations at school and at home followed by Christmas and New Years...it has been very busy.

I have started to utilize the Stage IV message boards on the breastcancer.org website and they have been a god-send. It is so wonderful to connect with women who understand what it is like to live with this disease and all the various treatments. They offer advice, what has and hasn't worked for them, they check in on other members that are actively posting but then disappear for sometime (all of us having the same fear that perhaps they aren't posting anymore for the worst possible reason) and support each other. They share hopes and joys, tips and experiments and research, research, and research. I have been pouring over a ton of research that is a result of information I find on these boards. Thank you!!

Each member that posts on the boards has to have a profile. The profile lists your medical information and will look like something like this:

Dx 7/10/2012, IDC, 6cm+, Stage IIIa, Grade 3, 2/2 nodes, ER+/PR+, HER2+Dx 8/2013, IDC, Stage IV, mets, ER+Surgery Mastectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 09/11/2012 Adriamycin, Cytoxan, TaxolTargeted Therapy 11/01/2012 HerceptinRadiation Therapy 02/28/2013 ExternalHormonal Therapy 05/28/2013 TamoxifenRadiation Therapy 09/09/2013 ExternalSurgery 10/17/2013 Prophylactic Ovary Removal (Both)Chemotherapy 11/01/2013 TaxotereTargeted Therapy 11/01/2013 Perjeta
OR

Mother of 2 - Daughter age 6, Son age 3; Liver mets

Dx 7/24/2012, IDC, Stage IV, Grade 3, 7/17 nodes, mets, ER+/PR-, HER2-Surgery 08/02/2012 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 09/11/2012 Adriamycin, Cytoxan, TaxolRadiation Therapy 01/21/2013 ExternalHormonal Therapy 03/01/2013 TamoxifenSurgery 03/20/2013 Prophylactic Ovary Removal (Both)
OR

Dx 03/2013 @ 36 years old, Stage IV inflammatory breast cancer, triple negative, mets to brain, lung, liver, bone. Doing this for my amazing hubby and 2 kids (5 and 1 years old)

Chemotherapy 04/01/2013 Abraxane, carboplatinSurgery 08/09/2013 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 08/19/2013 TaxotereTargeted Therapy 08/19/2013 HerceptinTargeted Therapy 08/19/2013 PerjetaRadiation Therapy 08/20/2013 ExternalRadiation Therapy 10/22/2013 3-D conformal external beam radiationChemotherapy 11/25/2013 Xeloda
OR

Stage 4 in 2009, mets to liver, lungs, bones, and brain.

Dx 8/12/2002, IDC, 1cm, Stage IIb, 3/12 nodes, ER+/PR+, HER2-Dx 4/2/2007, IDC, 1cm, Stage II, ER+/PR+, HER2-Dx 9/1/2009, IDC, Stage IV, mets, ER+/PR+, HER2-Chemotherapy 10/01/2002 Adriamycin, CytoxanChemotherapy 01/01/2003 TaxolHormonal Therapy 05/01/2003 TamoxifenRadiation Therapy 05/01/2003 ExternalSurgery 05/01/2007 Mastectomy (Both)Chemotherapy 06/01/2007 Cytoxan, fluorouracil, methotrexateSurgery 05/01/2008 Reconstruction: Tissue expander placement, Latissimus Dorsi flap (Both)Targeted Therapy 09/01/2009 AvastinChemotherapy 09/01/2009 AbraxaneHormonal Therapy 06/01/2010 FemaraChemotherapy 09/01/2011 XelodaHormonal Therapy 01/01/2012 FaslodexChemotherapy 06/01/2012 NavelbineChemotherapy 05/01/2013 GemzarHormonal Therapy 06/01/2013 AromasinTargeted Therapy 08/01/2013 AfinitorChemotherapy 10/28/2013 Halaven
This is my profile:

Dx 9/18/2010, IDC, 6cm+, Stage IIIc, Grade 3, 15/19 nodes, ER+/PR-, HER2-Dx 9/28/2012, IDC, 1cm, Stage IV, ER+/PR-, HER2-Chemotherapy 09/01/2010 Cytoxan, Epirubicin, fluorouracilChemotherapy 01/07/2011 carboplatin, TaxolSurgery 03/11/2011 Reconstruction: Breast implant (permanent) (Left)Surgery 04/11/2011 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Reconstruction: Tissue expander placement (Left)Radiation Therapy 06/07/2011 ExternalChemotherapy 06/07/2011 XelodaHormonal Therapy 09/03/2011 TamoxifenHormonal Therapy 10/25/2013 AromasinTargeted Therapy 10/25/2013 Afinitor

I have been living in the dark as far as the cancer details go. I haven't been reading my reports. I remember Dr. Mao telling me of studies where researchers told various cancer patients that they were either fine or not on a piece of paper (even though they were all in the same health position) and those that were told good news went on to be happier and do better that those who were given the (fake) bad news. I am so conflicted. I decided a few weeks ago to read my report after I got a call from my oncologist saying that my tumor markers are still on the up tick. Apparently they are still rising but the rate at which they are rising seems to be slowing some (but not enough in her opinion). I am scheduled for scans on January 8th. 
I tried going up to the 7.5mg of Afinitor and I can't do it. The mouth sores come back after two or three days. I had such a great time finally meeting and spending quality time with another Stage IV survivor Stefanie, whom I had previously talked to when I was first diagnosed with mets and who seriously scared the bejesus out of me back then...but she is the most radiant, spiritual and beautiful person inside and out and I'm thrilled to have her in my corner.  She was just diagnosed with her third recurrence and before she decided to try the Afinitor/Aromasin ("A/A") combo she connected with other Stage IV women who had provided a list of pros and cons. I am so happy that she sent me that list because I learned that some women were having good results on the A/A combo and on the 5mg dose. SO...I emailed Dr. McAndrew and my MD Anderson oncologist Dr. Moulder and asked what dose I should be on. Dr. Moulder came back with 5mg. Dr. McAndrew came back with 7.5mg because she thought that I wanted to up my dose from 5mg....ugh. I am NOT the medical professional here. I want to kill cancer but I also want quality of life. I'm certainly not qualified to make decision on my medications so why does why leave it up to me?!?!? Anyway, I've also noticed wheezing in my lungs while on the A/A combo and according to the list of A/A combo women some experience lung damage (a major side effect listed is lung and/or breathing problems) so why if I am already having wheezing would I want to up the dose? So yeah, I'm staying on the 5mg and if it isn't working (I'll know end of next week) then we are switching to some kind of chemotherapy instead of "targeted" therapy like A/A.
I have been having a lot of bone pain. I have been walking a ton as my regular exercise. I haven't done much ballet or anything else. With the kids being out of school it is much simpler to walk with them or bike with them to keep in shape and keep them entertained at the same time. When I saw Dr. McAndrew and told her about the bone pain she immediately ordered a bone scan. I had that right before Christmas. Merry Christmas! The scans showed that there wasn't much change from the Pet/CT I had 2 months ago and that the smaller lesions that showed on the scan didn't show on the Bone Scan. I think that is good news but I can't tell for sure; Dr. McAndrew called when I had just fallen asleep so I can't remember the whole conversation. Typical. However, something I learned through Stefanie's list and through my message boards is that the second A in the A/A combo, aromasin causes major joint and bone aches. That made me feel so much better. It's very disheartening when every little bone or muscle ache gets immediately attributed to the big C.  Instead, it could be one of the many medications I took and am taking that could cause me to feel like a centenarian. 
I sat down and printed out a diagram of a skeleton plus a detailed diagram of the spinal cord anatomy to understand where the lesions are in my body. Here is what I have in my report and what I should change my message board profile to read:
BONES:Right ScapulaRight 7th RibPelvisSymphysis PubisBilateral Hips (i.e. both hips)Bilateral Femora (i.e. both femurs)Thoracic Spine T4, T6, T12Lumbar Spine: L2, L3, L5Cervical Spine: C4 
LIVER AND LYMPH:Liver - dome of right hepatic lobe; medial segment of left hepatic lobe; caudate lobeLymph - retroperitoneal, mediastinal and hilar lymph nodes
When I meditate and pray I am going to envision each of these areas being clear and NED. It's not pretty. There are so many little lesions in the bones. It really freaks me out. 
I am scheduled to have an oophorectomy on January 27th. We are going to use information from the scans on the 8th to determine if I should proceed with the surgery. Dr. McAndrew feels that if I am not having success with the targeted therapies (that is the drugs that work to bind to the hormone receptors of the cancer cells) then perhaps the cancer has become resistant to these drugs and to the hormones so surgery would be unnecessary. On the one hand, yay that I get to keep my ovaries and perhaps leave my hormones alone, stop taking lupron and attempt to get my hormones in balance; on the other hand, boo that these targeted hormone therapy drugs aren't working on me since they can have the least side effects. Such a mixed bag. I have this feeling deep down that getting my hormones in check might actually help my body. Estrogen keeps bones strong. I have lesions in my bones. I need strong bones. BUT if estrogen is feeding the cancer that is in my bones then WTF choice do I have but to get rid of all estrogen in my body? Ugh. Time to head back to MD Anderson as well...I have so many questions. I've also heard about a study that showed that for women with late stage breast cancer treatment with Estradiol, yes oestrogen (synthetic estrogen) can shrink the cancer and then re-sensitize the cancer cells to hormonal therapy. I've found some people on the message boards that this has worked for as well. I'm compiling a list of questions and studies that I will present to both McAndrew and Moulder for their thoughts as well... I'm also getting in with Dr. Kenneth Conklin to review supplements that help combat the side effects of treatment; this will also be followed up with a visit to Dr. Keith Block at the Block Center for Integrative Cancer Treatment. I've wanted to go for about three years and NOW is the time.
2014 is going to be the year that I get this disease in check. Happy New Year!!