I had a week to think about this latest news, to read the MRI reports and luckily have an impromptu appointment with my radiation oncologist last Thursday when I ran into him at Karmanos while there for blood work and an injection; all before meeting with Dr. F on Thursday morning.
The MRI report and meeting with my radiation oncologist revealed cancerous activity at more than one place in my spine and also elaborated on some of the damage that has remained there for the last few years due to cancer, radiation and other side effects. The good news is that over the last two weeks, the pain in my back has subsided substantially. So while my radiation oncologist said we can definitely radiate this area (even though part of it has already been radiated once), he would suggest waiting to play that card until I absolutely have to. And I agreed. Radiation to the spine carries a great deal of side effects, not only potential damage to the spinal cord, but also damage to surrounding structures. The last bout of radiation I had to my spine left me feeling like I was swallowing glass and resulted in dropping too much weight in a few short days from my inability to eat or drink. My radiation oncologist, Dr. M, assured me I can call him any day, at any time, if my pain returns and I need to get in for radiation. He is simply the best and I am so grateful to have him on my team...and grateful I don't need his care again quite yet!
Mom and I headed to my appointment Thursday morning, where we came with a handful of questions, but also a lot of faith in Dr. F and his opinion. Dr. F shared that there are plenty of arguments to support changing my treatment at this point, but just as many to support watching and waiting. These are some of the main points of our pretty long discussion together:
When the study was published in 2016 about the combination of drugs I am currently on, it was hailed as a huge success because the "progression-free survival" rate was 9.5 months. I have been on this treatment for 22 months now so I am extremely grateful for that! And if I can squeak out some more mileage on it, all the better!
On another note, I will be meeting with the Phase 1 Clinical Trial doctor at Karmanos in a couple of weeks to see what trials they have. It is a scary thought for me because the phrase "clinical trial" has also felt like the words "palliative" or "hospice"....words you hear when things are extremely dire and there aren't many options left. But luckily, Dr. F explained it to us in a way that made a lot of sense and didn't feel nearly as terrifying.
Aside from meeting with the clinical trial doc, Dr. F is going to watch me a little closer for now. I will still have blood work every couple of weeks, injections every 4 weeks, see him every 8 weeks and get scanned again in 3 months instead of 6.
I feel in my gut this is the right plan for me at this particular time. I feel good about it - as does Mike, mom and my doctors. So we wait...and we watch...and pray that the pain doesn't return and that these rogue cells chill out and hibernate for a good long while.
In the meantime, my blood counts have plummeted once again (never seems to be any rhyme or reason), so I wasn't able to restart my treatment on Thursday. It does explain some of the additional fatigue I have been feeling lately. I will have repeat labs done next Thursday and hopefully restart then.
I think that about sums it up.
Thanks for all the love and prayers!
It's not quite the exciting package one hopes for that appeared on the front porch today. No fun new pair of shoes from Nordstrom or random gadget from Amazon. This package is filled with potential to cause a range of symptoms from nausea, vomitting, diarrhea, fatigue, low white blood cell counts and mouth sores...just to name a few. But, this small box of 21 capsules is also filled with hope, potential stability and the return of healthier days. The only thing I do know for sure is that this package is filled with a whole lot of uncertainty. And although I am used to living with a great deal of it, this time the unknown seems a bit scarier.
This new medication is one of two new drugs I will be starting this week. This oral medication is called Ibrance, and is also known by the generic name of Palbociclib. Ibrance is what is known as a "targeted therapy". In very simplified terms, targeted therapies aim to attack the cancer cells without harming the body's normal, healthy cells. Therefore, targeted therapies, while they come with their own list of side effects, aren't as toxic as traditional chemotherapy agents. Ibrance is a targeted drug that blocks proteins in the cancer cell which in turn helps prevent the cells from dividing to create new cancer cells.
I will be taking Ibance daily for 3 weeks, followed by 1 week off which will allow my body some time to recover and for my blood counts to bounce back up. Due to the high risk of my white and red blood cell counts dropping significantly, I will have blood work drawn every two weeks to make sure I am safe to continue on this treatment.
Not only does this week mark the start of Ibrance, but it will also be my first time receiving Faslodex. The drug has the generic name of Fulvestrant and is the intramuscular injection that I will receive every two weeks. The two of these drugs together have shown very promising results in recent studies. You could read about that here. Faslodex is known as an "estrogen receptor downregulator" which means it binds to the estrogen receptor site of cells and causes the receptors to break down, thereby preventing the normal cellular responsen to estrogen. This is important since my breast cancer is fed by estrogen. Even though I am in medically induced menopause, we want to make sure there isn't any other way these cancer cells can by fed by any stray estrongen that may be floating around.
I will receive my first injection of Faslodex on Thursday, along with my monthly injection of Zoladex that keeps my ovarian function supporessed. On Friday I will meet with a gynecological oncologist at Karmanos to discuss my surgery to have my ovaries removed.
Fingers crossed that I tolerate this treatment well with as minimal side effects as possible. And of course, that this treatment plan is successful! I have blood work next week to check how my counts are responding and will then see Dr. F the week after that to see how I am tolerating the treatment. It sounds like I will have scans in about 3 months to see how things are looking.
As always, thank you so much for the love and prayers. Please keep them coming!
ps - We just got back from a trip to California where I was invited to the Dr. Susan Love Research Foundation Metastatic Breast Cancer Collateral Damage Project. I am really looking forward to sharing more about that soon. But until I have the energy to write that post, enjoy these little snapshots of my free day spent with Mike. :)
There is no doubt about the fact that cancer is one sneaky beast. Lurking in the darkness. Slowly creeping up through the shadows and rearing it's ugly head at any time.
I have always known this. I have lived this while watching relatives and friends face the disease before I did. But it is another thing altogether when cancer sinks its fangs into you.
I have been neglecting the blog so much over the last couple of years because truthfully, all has been relatively stable for me since my recurrence at the end of 2014. Life has been full and busy - just like I have always liked it. Work, photography, travel, family, pups, friends, cooking...fitting as much into each day as possible. This summer I was feeling the best I have in years. One of my bff's and I devoted ourselves to a morning bootcamp class before work and I faithfully attended for about 12 weeks. It felt so good to finally feel more like myself - energized, strong, and comfortable in my own skin. It never ceases to amaze me how quickly that can all change.
On September 15th I awoke around 2am to excruciating back pain...the kind that is impossible to describe unless you have experienced bone pain from cancer. I have felt this before and know it all too well. I felt like my back was going to shatter in a million tiny pieces. I woke Mike up and asked him to please try to rub my back in the hopes of some relief. To make a long story short, after suffering through the work day and barely getting through it, I ended up in the ER that night. This started a cascade of events which have led to where we are today. At the risk of skipping some details, but saving some energy, here is the "highlight reel".... ;)
-Completed bone scans, CT scans and spine MRI's the last week of September
-Learned on Sept 29th that I had progression in my spine at multiple levels which also caused my T8 vertebrae to be fractured
-Underwent high dose radiation treatments to my spine every day before work for two weeks which concluded on October 14th
-After initially only feeling some fatigue and slight nausea, I encountered severe side effects the week after radiation ended. My esophagus was an innocent bystander caught in the crossfire of radiation and the damage was unexpected and extremely painful. It was not a sore throat due to the radiation burn that you would expect. It was more like trying to swallow glass through a tube that had narrowed down so tight that even water caused ridiculous pain and coughing. It become so bad that I avoided food and liquid altogether; resutling in a 8 pound weight loss over 4 days, along with severe exhaustion and overall feeling like crap.
-Could finally start eating towards the middle/end of last week and have been feeling MUCH better!
So, that brings us to today. I went in this morning for a follow up with Dr. F, my oncologist. It is too exhausting to detail right now but basically, I thought he wanted to stay the course on my current treatment because it has been keeping the rest of my body free from disease and limiting the disease to my spine. I was taken by surprise this morning when he immediately stated he wants to switch my treatment plan completely to two targeted therapy drugs. I had been feeling in my heart that it was time to switch treatments but I guess I just didn't expect it today and I wasn't prepared. It unleashed a flood of emotions and uncertainties about the future....
What will these side effects be like? Will this change my quality of life? Will I be able to maintain my normal busy schedule? Will I feel nauseous? Fatigued? Lose/gain weight? Will this work and for how long? What if I have another progression soon and blow through yet another treatment option? What if it doesn't keep the disease limited to the bone? What will happen if this fails?
I have been beyond blessed these last 5 1/2 years to maintain a pretty great quality of life despite all I have been through. I don't want to lose that. I don't want to start to head down that road of jumping from one treatment to the next because things have stopped working. I don't want to hear, "there is nothing else we can do for you". I learned tonight that another young friend with MBC was just told those exact words yesterday. She has entered hospice and it's just heartbreaking.
The other tough part of today was making the decision to finally have my ovaries removed. My disease is fed by estrogen so my ovarian function has been medically suppresed since I was first diagnosed...first through chemo and immediately following through that lovely shot of Zoladex I receive every single month. Dr. F has always said that there is no real difference between the Zoladex and having my ovaries surgically removed. I told him to tell me point blank if it would better my chances for survival to have them removed and he said the research can't prove that. So, we decided to stay on Zoladex and not rock the boat by having surgery.
Well, today he finally said, "If it was me, I would have them out." That's all I needed to hear. I know it will be a pretty straightforward laproscopic procedure, and I am not worried about the surgery itself at all. But it just feels like another huge punch in the gut. Another glaring reminder of all that cancer has robbed from me. I feel like I have been dismantled piece by piece of all that makes me a woman - the loss of my hair, my eyelashes, my breasts, my ovaries, my ability to bear children. It is a pain that runs so very deep and having my ovaries removed opens that wound up...a wound I have tried so desperately to close up and allow to heal.
My new treatment plan will consist of two new drugs I will write more about later. They are extremely expensive so I have to wait to start them until I receive insurance authorization and I don't know when that will be. I will take an oral pill daily for 3 weeks and then have 1 week off, then repeat. The other drug is an intramuscular injection that I will receive in the good ole' tush. I will receive it every 2 weeks for the first 3 rounds and then every 4 weeks after that.
There are side effects of these new drugs that are highly likely, including a significant decline in my blood counts which will place me at high risk for infections as well as cause fatigue. There are many other possibilities but these are the most likely. I will have blood work completed every 2 weeks to make sure my counts stay in a range that is safe enough to receive the treatment.
So this is where we are, friends.
This is the plan until this disease starts crawling back up from the darkness and threatening to rock our world once again. But, with each attack it wages, I will beat it back down and chase it right back into the shadows...running it out of the sunshine where I choose to live my life.
Please keep me in your prayers. I am feeling a bit overwhelmed and down right now, which is not a place I like to be. Please keep Mike and my family in your prayers. Spefically, please pray for wisdom for our medical team to help us to make the right choices for my care; for strength to endure whatever may come our way; and for faith and perserverance while remembering that we are in God's hands and are loved and cared for every step of the way.
I promise to write more soon and keep you all updated.
Thank you for always being the most incredible support system anyone could every ask for. It is appreciated more than you will ever know!
That's right, folks....the breakfast menu for tomorrow morning is a whopping serving size of barium sulfate! Woohoo! Just how everyone wants to start off their Monday morning, right?
In case you aren't following my late night, exhausted attempt at humor...this means I am getting my next round of scans done first thing at the morning tomorrow. I will head to the hospital with Mike around 7:30am and we will likely be there until mid-afternoon getting a few different tests and bloodwork done. Downside - it's a long and exhausting day. Upside - Mike took the day off to go with me so at least I get an entire day with him by my side. We have both been so ridiculously busy lately that I am really looking forward to spending the day together, even if it means sitting in the lovely Nuclear Medicine Department all morning.
If you have some prayers, good mojo or healing thoughts you could send my way, I would sincerely appreciate it! It truly does ease the "scanxiety" knowing you are all cheering me on and sending positive thoughts into the atmosphere.
I have lots of updates it seems, especially about all of the hard work I have been doing to promote MBC and young survivors at the Komen Detroit Race for the Cure this year! It is late and I have to get to bed, but I promise to update soon. If I don't get a chance this week since it's going to be a nutty one again, please at least spread the word to anyone who is local, to please register for the Komen Detroit Race for the Cure this year and come see what we have been doing - especially for those women who are metastatic. Here is a little sneak peek at one of the great things we have in store for race participants.
Please join us next Saturday at Chene Park in Detroit or make a donation to "Team Malley Rally" here.
Thanks again for your thoughts and prayers. Won't see Dr. F until a week from Thursday for my results. Waiting is soooo....fun. (insert sarcasm here)
And because I can't possibly have a post without sharing some pics...here are some quick iphone shots of the fun we had together on Mother's Day while cheering on the Tigers!
Yesterday, I was introduced to NED! "No evidence of disease"!!!!
I saw Dr. F for my results of my latest round of scans and immediately burst into tears when they told us that the scans looked great and that I was still boring just like 6 months ago. :) But, what shocked me even more was the fact that the bone scan said there was no evidence of metastatic disease in my bones! Well, hello there NED!!!!
Now, let me please explain that Dr. F doesn't put a whole lot of stock in those words. He said he doesn't get "overly excited or impressed" and that these scanning machines are not perfect. He says it's much like looking down from an airplane and trying to see a dandelion in a field. It's near impossible to spot just one but if there are a lot of them in a big patch, you can see them easily. So, he basically means I still could have little isolated cancer cells in my body but right now there isn't enough of them to be detected on the scans. I have always understood this and I am okay with that. I understand that sometimes people hang their hats on "NED" and then they have a scan a few months later that shows a change and they have a huge let down after feeling like they were as close to "cancer free" as possible.
I truly understand that and I have always been happy to hear that I am "stable"...but for right now...for just a few days (or months)...I am going to be extremely thrilled that I am hanging out with NED! I know it doesn't mean I am cancer free or that I am cured. It means that right now my medicine continues to work and keep me in remission. It means that I can continue with my current treatment. It means that my bones, although still damaged, are healing. And most importantly, it means that I can continue having a really amazing quality of life. The few side effects I experience from my meds (hot flashes, fatigue, joint aches) are so minimal in the scheme of things and I don't let a day go by where I am not grateful for that.
There are still little things we will keep an eye on. My platelets are on the low side and I have been having a lot of issues with bruising. If those continue to drop, I will have to have a bone marrow biopsy to see if my meds are impacting my body's platelet production. There are a few other minor issues I have been having but nothing big and nothing that Dr. F is really worried about.
THANK YOU, THANK YOU, THANK YOU for all of your support, love and prayers! I couldn't be happier and couldn't be more grateful. I do believe in the power of prayer - I believe in God's ability to work miracles and I am not giving up the faith that maybe there is one in store for me. It has taken me this long to truly be able to even put those words out in the universe, but maybe - just maybe, I could live a long, healthy life in complete remission without this awful beast robbing me of my future.
For now, I am believing that this can happen for me and I will continue to fall asleep each night with a smile on my face...dreaming of NED. ;)
With a grateful and overjoyed heart,
Well, I got the boot today...got kicked out...told to hit the road...adios amiga...catch ya later! In all seriousness though, I did get sent home from chemo today because my counts were too low. I am super bummed out, and somewhat surprised. I know it might sound crazy, and most people would love to get out of chemo for the day - but when you are in the midst of this, all you want to do is blaze through it as quickly as possible. Now we are delayed and everything gets pushed back another week. I know it's not a huge deal in the scheme of things, but of course being the planner that I am, we already had a family vacation planned for the first week of September and my date for surgery was somewhat set. Now, all of those dates are out the window because I will no longer be done with chemo on September 1 as originally thought.
After checking my weight (which was up - yay!) and my vital signs, my nurse, Denise accessed my port to draw my blood. Mike and I waited awhile to hear the results but I never thought they would be too low to get chemo. Denise finally came back and said that my counts dropped significantly since last week and that she would be very surprised if Dr. F allowed me to get chemo today. Sure enough, Dr. F said "no way, Jose" and we were sent packing. I didn't actually get to see Dr. F this time, but Denise explained that this may still be residual effects of the first set of drugs I was on, since those are so tough and usually drop your counts much more than the Taxol that I had last week. My white blood cells, specifically my neutrophils, are severely low.
White blood cells (WBC's) are part of our immune system and are the ones that we need to help fight infection. There are five different types of WBC's, one of which is called neutrophils. Neutrophils make up approximately 45-70% of all WBC's. The normal range of WBC's is 4,300-10,600 cells per microliter of blood and the normal value for neutrophils is 1,580-7,130, with neutropenia (low neutrophil count) being classified as anything lower than 1,700 and severe neutropenia being anything lower than 500. Well, today my WBC count measured at 1,800 and my neutrophil count is only 300! So, this means I am at an extreme risk of infection because my infection fighting cells are significantly diminished. On top of that, my hemoglobin (part of the red blood cells that carry oxygen) has dropped again. The normal value for hemoglobin should be between 11.5-15.1, and mine measured at 9.0 today. Low hemoglobin can cause symptoms such as fatigue, headache, dizziness, lack of concentration, and shortness of breath.
So, what does this all mean? I have to be EXTREMELY careful to avoid infection. We have to be very diligent about hand washing and keeping our house germ free. I am no longer allowed to be in crowds, around children, or near anyone that may be sick. If I have to go out in public, I have been instructed to wear a mask over my nose and mouth to avoid any possible risk of infection. I knew I wasn't feeling the best earlier this week, and even told Mike that I thought I might have over done it by going to Nashville, but I never thought my counts would be so low. All I can do now is to rest, hydrate, stay infection free, and pray for elevated counts when I go back to chemo next Thursday.
I am a bit frustrated and disappointed, but more than that, I am a little sad that this has once again served up a dose of reality and it makes me nervous. I sometimes feel invincible - that I can handle anything - that even chemo can't knock me down too hard or for too long. Today was a reminder that even if I am feeling mentally tough, physically my body is still fighting so hard and no matter how much I try, there are certain things I don't have control over - such as my blood work. I never would have guessed that my counts would be so low today and it just scares me because right now, I need chemo! Although it is the chemo that is making me so sick, I still firmly believe I need it to save my life. I just pray that I am able to get back on track soon.
So, it looks like I will have to cancel all of my plans for the next week- which is such a bummer especially because my wonderful cousin, Becca and her husband and two sweet kiddo's were coming for a visit from Denver. I am hopeful that my body will be in fighting shape by next Thursday and I can resume my treatment plan then.
Thanks again for your continued love, support and prayers! Since I am going to be trapped at home for the next week, does anyone have any good jokes? Movie recommendations? Books? Say an extra prayer for Mike that I don't drive him insane this next week- haha! :)
Looks like these will be the only faces I get to see for awhile....good thing they are both so darn cute :)
My blog to keep you all