TNBC Awareness Day

Today is Triple Negative Breast Cancer (TNBC) Awareness Day. Until late last night, I didn’t know there was such a day – and part of me can’t help but wish there was no need for it.

Honestly…I don’t have any words for this day or this disease. Triple negative means just that…the cancer is negative for the 3 “typical” hormone receptors that usually feed breast cancer – estrogen, progesterone and HER2-NEU. As you may know, I was (barely) HER2+ when initially diagnosed as Stage 3, which is why I was treated with a certain standard chemo treatment and why I continued herceptin alone until I was re-diagnosed. 

The name itself – triple negative – basically says something along the lines of, “We have absolutely no idea what is feeding this or how to treat it”. For this reason, it tends to be a significantly more aggressive form of breast cancer that is extremely challenging to treat. This is why, often times, a systemic “bomb” of sorts is thrown at your body in the hopes that it will kill the cancer (usually while also killing other rapidly reproducing  cells, such a hair).

Recently, there has been a significant amount of research being put into TNBC so that it will no longer be an unknown cause.  Genetic testing is extremely important, as I am learning that there are actually multiple types of genetic testing that can be done to distinguish what may be driving my cancer. There are also many clinical trials -quite a few that show promise – directed at TNBC. Some are working on your entire system while others attack certain genes. Immunotherapy is a big one that is basically a hit or miss (as i understand it anyway) but absolutely something worth trying.

I appreciate that there is a day to create awareness around TNBC but like I mentioned, I didn’t even know there was such a thing. I learned it from some of the Stage 4 breast cancer Facebook pages that I follow. That being said, all breast cancer sucks. Regardless of hormone receptor status, it is a constant battle and a regular struggle to get through each day, especially with a sense of normalcy, when dealing with breast cancer. Even when there is a specific hormone that may be driving the cancer, there may also be a gene – or multiple genes – that are also driving it. This can make any cancer extremely aggressive to treat and determine whether or not it’ll react to standard treatment options and for how long. Especially as Stage 4, there will come a point when a treatment will stop working and a new one must be sought out – all while considering quality of life.

And then there’s cases like mine where the cancer morphed along the way and throws everything out of whack! And as I learn more and chat more with others, I am learning that it is not uncommon for cancer to morph – even again. It’s also not uncommon to have different drivers of cancer within you. Perhaps you are triple negative but the cancer in your brain is actually HER2+. This is one reason why a biopsy (and in my opinion Foundation One genetic testing) is so important with each new cancer. Admittedly, I have not had my bones tested. I hear that’s pretty horrible.

Anyway, that’s what I have to say. I have to smile because I started this post with nothing particular in mind, thinking it’d be short and sweet. But as it turns out, I apparently have a bit to say about TNBC.  😉

As always, if you are interested in donating to Stage 4 research – where every single penny goes to just that – you can do so at Metavivor.org. I pray that within my lifetime, I will be able to see this disease turn into something chronic that I have to live with – a long, long life – rather than a terminal one.

I hope you learned a little something about TNBC today. 😘❤

Happy Wednesday!

Hello, world!  It’s been a busy week already and we’re trying to get back into the swing of things after a long time away from home.

So I showered today. I know what you’re thinking – “p-uuuuu!” (is there a proper way to spell that?). But nope, I’m not stinky – I actually showered instead of taking a bath. Yeah!  Some of our travels didn’t have baths so a shower was required. It’s been months since I’ve showered because of radiation burns and though I still have one open wound and it was a bit painful in the shower, it was awesome. The ability the wash my own hair, stand in the steamed up shower and feel the warm water drip down my back…oh, so wonderful.

Oh, and my port can now be used!! This is SO awesome too! No more arm pokes. 😊

My radiation oncologist (RO) thinks my wound may be healed within about 2 weeks! Say, what?! I know that’s wishful thinking but the idea that I won’t have to change bandages every 3 hours, have to apply a special lotion every night and have consistent pain in the center of my chest…well, that’s quite exciting.  We’ll see – but that’s what I’m aiming for! And being healed means that I will finally be able to have surgery and that also means that I’ll be able to have MRIs.  All of these things are actually super exciting!

I also saw the neurosurgeon, who reviewed my actual brain scans and agreed that everything looks stable, which is also great news to hear. I’ll take that!

Today I saw my oncologist and we had a long discussion about treatment. We discussed an old school standard triple negative chemo treatment called CMF, which is an option and appears to be quite tolerable and effective, however it is IV chemo.

Afinitor is still an option but he is not entirely sure that I’d be able to get it covered by insurance, which is a whole other story. Since internally everything appears to be fine (if not better), it makes sense to continue Xeloda until I have internal progression or my skin nodules become larger, concerning or unbearable. My blood was drawn today and I’ll have my tumor markers in a few days. I am anxious for that, as they have been a pretty good indicator of whether or not I have internal progression. Aside from that I am on the low end of normal blood numbers but still within the good range for chemo. I am slightly anemic…anyone have a home trick to get that number up, aside from eating red meat?

In the meantime, I have spoken with the oncologists at the Mayo Clinic and MD Anderson, both who agreed that continuing Xeloda is the best course of action for now. MD Anderson discussed that while I have progression, it isn’t significant enough to stop treatment yet. Aside from discussing Xeloda, the Mayo Clinic actually has a Phase 2 trial for the same drug that MD Anderson & Emory are testing. Apparently that drug is the hot topic right now! 😉 She has the same concern regarding measurable disease causing me to be ineligible for now.

As my local oncologist referred to it, I am “treading water” for now. I’ll continue Xeloda, have scans every 6 weeks to ensure that nothing is missed and *hopefully* in a year or 5 from now, I’ll still be treading this water and staying on the current course. For now, it feels right and hopefully it will stay that way for a long time!

Have a wonderful Wednesday night, everyone! 💚

Decisions, decisions…

It’s hard to believe that it’s been just over 3 months since I had a craniotomy. Just over three months since a rogue cancer cell took off running towards my head, fought against all the healthy cells and snuggled into my right cerebellum to make a home. Although only a few centimeters big at the time of surgery, I had already been experiencing horrific headaches up my right neck and above my eyes. The fear of another stray cell making a home in my brain will always be a very real fear for me.

In October, I had an urgent brain CT because of headaches and dizziness. Thankfully that came up clear and the headaches have since resolved. I’m still dizzy when laying down and moving my head to the right or if I stand too quickly. This Tuesday, I had my brain scanned again in preparation for my Gamma Knife follow up with the radiation oncologist today. I am relieved that once again, my brain scan came up completely clear. It’s likely my inner ear causing the dizziness.

My appointment today went well and, assuming nothing crazy happens in the meantime, I don’t need another brain CT / follow up for 3 months – WAHOO!!

The nurse oncologist called me Tuesday after the brain scan to let me know the good news and to talk to me about treatment options. I visit MD Anderson next week but I haven’t been on treatment since October 18th when I stopped Xeloda. My skin is not improving but still looks relatively good (considering), internally I am stable, and actually quite a bit better than I was back in July. My lymphatic system is resolved and I have 3 relatively small spots lighting up in my pelvic area. My shoulder did not appear on the bone scan, though it’s possible there is stable cancer there or it’s possible it has resolved.

So I essentially had three options for treatment. I continue with no treatment while awaiting MD Anderson. The risk is just that – no treatment. When I visit MD, my assumption is that it will be a visit like the others but that they would also test me for clinical trials and see what I am eligible for. I would not actually start anything for (potentially) a few weeks / months.

Option 2 is to start Afinitor. This is a chemo pill and showed up on my Foundation One testing as an option for one of my five mutations. It is typically used in estrogen positive breast cancers, which would make the insurance coverage a battle. My oncologist would need to “sell” my case to the insurance company to try and obtain coverage. This could take a month or so. Often times, centers that have clinical trials have an easier time obtaining coverage for drugs like this since they have trials on their side, so to speak. It would be considered a second line of treatment, which would potentially eliminate me from certain clinical trials. This being said, it is also a treatment option that I can utilize at a later time, in the hopes of it working.

Option 3 is to go back on Xeloda. I have skin progression that started while I was on it previously but it was working to keep my internal progression in check – if not helping to resolve it. It would not be considered a second line of treatment since I had used it previously. I would lose my washout period, which is required for clinical trials, however since I will likely only be assessed next week at my visit, I will have time for a washout period once I know what trial I am eligible for. It’s possible that I find out that I’m eligible for a trial that has a 2 week washout period but that it won’t actually start until January. That would be quite a long time without any treatment since October, considering it would only require a 2 week washout.

So…it’s been a long week. After conversations with my nurse practitioner, my local oncologist and a whole lot of soul searching, I decided to restart Xeloda yesterday. I don’t want to risk a second treatment right now, although I like the idea of a chemo pill option again. It’s nerve-racking to not be on any treatment. Although I feel reasonably ok, there could be cancer cells dancing around my body making home where I don’t want them to be. It was not an easy decision to make but it had to be done. Here’s hoping my body decides Xeloda is the one for it and all of my cancer resolves, skin included. 😉

Aside from that, my skin is very slowly healing from radiation. Crazy to believe that I’ve literally been healing for 2 months now and I healed fully within 2 weeks before. I still have an open wound on my chest but it’s a little larger than a quarter now (crazy how much pain that small spot causes!!). The other smaller spots that were healing have scabbed over and are healing at their own pace. I know Xeloda will once again slow the healing process, and frankly I am OVER radiation burns, but it’s a risk that I need to take.

That’s my medical week, I think. Jacob is on his first round of antibiotics since last December. He came down with a wicked cough and a fever. This is the first time that we have given him Tylenol and not had his fever resolve almost instantly…it was quite nerve racking. He is slowly feeling better, thankfully, and the antibiotics are working their way through his system.

I hope you are all enjoying your week and this month of November. Rest up this weekend, enjoy time with your loved ones and continue to spread that love!!

My Tuesday Updates…

Yesterday I texted my RO because of the pain in my chest. I ended up going in yesterday for my appointment instead of this morning. We had a long visit (I love her) and talked a lot about my cancer. 

I have been wanting to do a biopsy on my skin for the last two weeks. I saw my nurse practitioner last Friday to help explain my Foundation One testing results to me (the results that show what drugs and trials I qualify for). When I showed her my skin, she  asked why it was determined to be progression. I showed her some of the other areas and she agreed that it could be viewed that way. This reiterated my biopsy question and she said that she would rather wait until after my scans today to see if there is progression elsewhere.

Showing my skin to the RO and talking about the last week, she commented that they looked better than the last time she saw them. After some discussion, she decided that we could do a biopsy. We will move forward with the assumption that it’s cancer, as we think it is, but we will know for sure. Also, the hormone receptors will be done again to make sure my skin is triple negative, since my cancer has morphed before. This is good news! I don’t expect the biopsy to come back negative but I am so glad that we I’ll know for sure that it’s cancer and the receptor status.

There is also concern over my skin not being fully healed by now. The area that I am double radiated still has a decent amount of raw skin and there are a few other, smaller patches. So the RO took a picture and sent it to a wound care nurse, while also having the PS surgeon check it out since I was seeing him for the biopsy anyway.

The PS numbed the radiated area then shaved off the first layer of the burn. It bled a lot, which is actually a really good sign. The first layer was likely dead skin mixed with silvadene and every thing underneath looked good. So after hearing from the wound care nurse, the RO (and PS agreed) is changing up my skin regimen. I will start a different topical cream called santyl on the radiation burn and use saline soaked gauze to clean it and cover the area, along with a large bandage. I can also use it on the smaller areas that are still healing or I can use vaseline. Do you know what this means? No more silvadene and bandages! Happy dance! 💃💃💃 I’ll have to change the gauze every 3-4 hours but hopefully that means I’ll start healing again!

So I had the biopsy yesterday, where the PS removed 2 larger skin nodules and sewed me up. Today, we spent the entire day – literally – doing scans. I had to have a CT scan of my chest and andomen, which (this location) required me to drink a contrast 2 hours before my scan. I also had my first ever bone scan, which required a radiactive-like substance to be injected 3 hours prior to the scan. The CT scan is pretty routine for me now and it’s over pretty quick. The bone scan was interesting because it took about an hour and required me to lay flat while it took pictures of my entire body. Similar to a PET scan, however I watched my body appear on the screen in front of me. I also watched as my joints lit up from the dye that was injected into me. In addition to the full body scan, the technician also took pictures of my arms, my skull (particularly the area that I had surgery) and my chest. I inquired as to why the extra pictures and if this was a bad sign and he said quite the opposite, that the radiologist reviewing my scans has never met me so he will only be reviewing my scans and not me. So any additional information or scans that can be provided is helpful to his assessment. Maybe he tells everyone this or maybe not but it made me feel better.

So now we wait. I told Joe I feel a little stuck right now…that I don’t even have a “choose your own adventure” route because it all depends on my scans and biopsy results. What treatment do I do? Where do I go? For now, I wait. I can’t change the results or the treatment options so once I have all of the facts, I can move forward. 💚

Emory Winship Cancer Center

We traveled to Atlanta to visit the Emory Winship Cancer Center. My sister went with us and she was excited to take notes and listen to the conversation. The visit was interesting. It was the shortest we have ever waited, which is usually between 30 – 60 minutes but we only waited about 10 this time. I assume, based on my visits, that the doctor’s are reviewing my stack of records before coming to see me. Then they come in with either their typed up notes on my history or their chicken scratch version, which always makes me smile.

The doctor came in with her hand written notes on a half sheet of notebook paper. My sister was asked to move her chair so the doctor could speak to all 3 of us. She went over my history and I filled in the blanks. Then she looked me in the eyes, point blank and asked “so why are you here?” This made me laugh. I explained that we know the Xeloda is working right now but eventually it won’t anymore and I want to be ready for that decision. I want my records at all of the centers, I want to meet each doctor and I want to know what everyone has to offer me when the time comes. I’m pretty sure I made her smile then too.

She discussed my current treatment and her excitement at the Xeloda working. It is also one of her first choices for treatment in cases like mine. She commented that the next standard course would be the IV chemo Taxol, though I had its cousin back in the beginning of my treatment and since it didn’t work then, she doesn’t recommend it as a next step. We talked about receptors and she was excited that I knew about the androgen receptors and that I am being tested for it currently. Though we anticipate that I’ll be negative, it’s a process we need to follow to see. It was interesting too because she commented that the drug companies expected this to be a huge trial with a lot of participants and there are a lot less people who qualify for the trial than originally anticipated.

She expressed her concern about having my tissue expanders removed as soon as possible so that I can have MRIs instead of CT scans done. My understanding is that I have to wait for any surgery 5 – 6 months after radiation ended but it’s a question that I’ll confirm for sure.

The visit was great and she spent about an hour and a half with us. We talked about my options and she was genuinely relieved that we were being proactive and that we understood there will eventually be a crossroads in which we have to make a decision. At the end of the visit, she squeezed my hands, leaned in close and told me that I am officially her patient and she will do whatever it takes when it’s time to make a decision. It’s so refreshing to hear that.

I am so glad that we made the visit and of course that we saw my sister & her husband! Here’s hoping we won’t be calling her, or any other oncologists, for a long time while the Xeloda keeps working! 😉