Today is a good day.


Joe & I ventured off to my scans bright and early today. I haven’t done full scans (neck, chest, abdomen, pelvis) at a local imaging center before because I also usually have a bone scan, which has to be done at a hospital imaging location. I must usually wear leggings too because when I arrived in jeans today, I was asked to change into scrubs to eliminate the metal button on my jeans. These pants had me cracking up! They had a rather large expandable waistband that tied at the waist and the legs were loose. The pants were actually super comfortable and I could totally sport them. These pictures had me cracking up though – I look so silly! The pants created a good laugh at the start of this long day.

The scans themselves were uneventful. For CT scans, I typically receive them with and without contrast. This means that I often have to drink a combination of water and contrast 2 hours ahead of time, they do a scan without contrast and then they inject contrast into my veins and scan again. When I go to the hospital, I have to arrive 2 hours early and drink the contrast on site then wait the 2 hours. They typically try and schedule the bone scan, which requires its own separate injection, during this time. I just recently learned that when I go to the hospital, I can have the script (for scans) written to have my port accessed. Since I went to a local imaging center today, I had to pick up the contrast last week so I could drink it at home prior to my appointment today. Much more convenient! They don’t have a registered nurse onsite so they had to access my veins for the injection instead of my port. I find it interesting that they wouldn’t train the technicians to access ports. It’s much more convenient, in my opinion.

I asked to ensure the scans were read STAT and my doctor had the results within an hour. Off I went to my appointment there next. I saw the Nurse Practitioner today. There was a rather long wait, which I debated spending on the exam table taking a nap (seriously tempting with how exhausted I am most days) but she came in cheerful as always and spent almost an hour chatting with us. I had a list of questions, which she joked was not unusual. My first question was about my scans. As she pulled them up, I expressed my concerns with progression, why I felt it may be happening and mentioned my tumor markers.

Aside from slight progression in my right neck lymph node and 2 areas of my spine, my scans are stable. Stable! This is such wonderful news!

My right neck lymph nodes showed some activity but it was considered minimal. My spine had some interesting activity that was indicated as stable but not listed on my report from December. My left iliac crest (pelvic bone) is not distinguishable on the exam – that’s right they couldn’t see it! – and my right iliac crest was stable. My lung and liver are clear, though I do have pleural effusion yet again on my right lung. It is already of moderate size and is indicated as also partially against my back, which explains the pretty bad pain that I have.

Stable. Ahh, such a sweet word. Yes, slight progression but overall stability. I’ll take it.

We talked for a while and she talked to me about the possibility of taking Xeloda again but this time combining it with the Afinitor. This is an interesting suggestion and not something that we have pursued. Aside from the pleural effusion, I had a good amount of stability with Xeloda. So perhaps combining it with Afinitor will help eliminate this cancer.

After I left, I headed to my appointment with the radiation oncologist. While waiting in the room, my oncologist called and talked to me more about Xeloda. We discussed side effects of before, that there aren’t a lot of studies about doing it and what it would potentially mean for my cancer. We decided it will be worth trying to see how I tolerate it and how I feel after the first week or two. This should be interesting…

My meeting with the radiation oncologist was good. My radiation wound is not yet fully healed, though it is slowly, ever so slowly, getting smaller. We discussed having the tissue expanders removed and she wanted to talk to the plastic surgeon about it to understand the logistics of that surgery. More to come on that.

So, though today was incredibly tiring, involved a lot of conversations, questions & learning and started early while ending late…it was a good day. A really, really good day. Stable. Ahhh, yes.

…and those pants! 🙂

Advertisements

Pleural effusion…?

This morning I went for my monthly Xgeva injection. While waiting, I texted my oncologist and asked if I could stop down for the rest of the results (they are only a floor away). He popped up to visit me while I was waiting. My chest CT came back and shows that I have fluid around my right lung called pleural effusion. He was quite surprised that I am not symptomatic, especially regarding shortness of breath. He was also surprised at the results, along with me.

Pleural effusion is concerning, though we are not entirely sure where it came from. It is possible that it is a result of radiation, though the chance is only 2 – 3%. It has been about 12 weeks since I completed radiation to my right side but it was significantly radiated (hence my still-open wound!). There is an assumption that the pleural effusion is a symptom of cancer. In some cases, it would make sense to wait it out and see what happens at the next scan. But with me, waiting isn’t a great idea. It’s best to determine what’s what and make a decision. We absolutely don’t want progression!

Similar to the way a bee sting causes swelling around the skin, it is likely that there are cancer cells floating about and they are causing the fluid to form around my lung. I also have “opacities” bilaterally in my lungs and my radiation oncologist suspects that it is scar tissue, as does the radiologist who read my report. Aside from the fluid, my lungs look “really good” and the rest of me is stable.

So what now? Well, it seems we are at a bit of a turning point….crossroads…something like that. 🙂 We don’t know exactly what is causing the fluid so I have requested a biopsy to confirm whether or not the fluid and lung lining is actually metastatic. Despite my mind being eased either way, I think it’s important to understand whether or not I actually have cancer surrounding my lungs.

My local oncologist recommended to stop Xeloda and begin Affinitor, though it will be a struggle to receive approval through insurance companies in the meantime (that’s a whole other level of frustration). They gave me 2 months of samples as well and we discussed his visit to San Antonio for the national breast cancer convention last week where there were presentations about Affinitor being used with triple negative breast cancer. It is my “off” week for Xeloda anyway so I have time to make a decision and have additional testing done before I meet with my oncologist again next week. No rushing here.

I have reached out to the different centers that I have visited, uploaded my recent scans and I am waiting to hear back. This is, quite literally, why I met with each and every one of those centers. They are some of the best oncologists in our country and I value their expertise along with my local doctors. I know MD Anderson doesn’t recommend Affinitor, however the other centers consider it to be a “reasonable choice”. I have many questions for all of them and I am anxious to hear back from them, especially after I know the results of the biopsy. That will be a key point and decision maker.

It is possible, though unlikely, that this is a symptom unrelated to cancer. If so, then there is still a decision to be made because we need to determine whether it is a side effect of radiation or Xeloda (the chance of it being from Xeloda is even lower than radiation) or none of those. If it is metastatic, then a treatment change is needed and next steps need to be decided. What those are? Honestly, I am not yet decided.

I do have skin nodules, though they are still not measurable enough for a clinical trial. My bones are stable – yay! Though they can’t be used for a trial either. I assume fluid, even metastatic, cannot be used as well. So a trial is not an option currently. I am hesitant to do IV chemo because, well, I don’t want to just yet. I know it’s there and I will need it eventually but I am not quite ready for that. One of them is more tolerable than some of the others but all would require me to lose my hair and well, I like my hair right now! 😉

I’ll have my tumor markers done again next week but they were higher than normal range when done two weeks ago. I was optimistic that they were possibly up farther and actually on their way down because of the Xeloda break (like before when I initially started) but this fluid makes me question my logic on that.

So next step is a biopsy and awaiting to hear from my other oncologists for their recommendations. I was hopeful that I wouldn’t need to make any decisions around the holidays but frankly, progression is worse so I am glad that my scans caught this before I actually have symptoms or major progression.

Is this the good news that I was hoping for last night? No but it’s not the worst news either. It just means that we need to have more answers before making a decision. 80% of my scans showed STABILITY. I like stability. Almost as much as I like it being gone entirely. 🙂

 

Another blessing…

Although we went to the same hospital for my scan, my bone scan was in a different room. There was a weird beeping noise in the corner of the room. When asked, the technician explained that it was a Geiger Counter. It started going off because I walked in the room. Sure enough, as I walked up to it, it started beeping faster and louder. I sure was radioactive! I think back to my first PET scan, where I truly was radioactive. I can’t help but smile at feeling like a superhero. So much has happened since then and so much has changed. Superheroes may only exist in books and movies but I like to consider myself among them. I may not have their total courage, abilities and strength but I have their determination and fight. And that’s what I continue to need. I’m glad these scans are a reminder of that for me.

I had a brief text with my oncologist tonight. My chest CT is not yet in but the rest of my scans are. They show very little change! My bone scan picked up cancer in my left pelvis (bone scan was clear last time despite cancer showing on the CT) that it identified as new, however that same spot was reported on my last CT so it’s not actually new. Encouraging news!

I don’t know all of the details yet since all the results aren’t in but I’m breathing a sigh of relief at the news I’ve received so far. It means another scan is stable, another cycle of treatment can be given and another 6 weeks until I hold my breath once again. I’ll take it.

Thank you all for your love, hugs, thoughts and prayers. I promise you that they do not go unnoticed. I love you all.

Scans, scans, scans

Scanxiety is a very real thing. I thought for sure my last scan would show progression and it showed stability. This time, I worry once again about progression but hope for more stability. Knowing my tumor markers are up and there is recently a swollen lymph node in my neck is not helping the Scanxiety but I remind myself that I can’t change the results. I can only change my perspective.

I’ve been injected for the bone scan so I’m radioactive – though significantly less than a PET (4 times less) so I can still snuggle my sweet boy tonight. I’m drinking the liquid iodine in preparation for the CT scan of my chest, abdomen and pelvis. The iodine takes 2 hours and the radioactive injection takes 3 hours before scans. The CT is relatively quick, while the bone scan takes a bit longer since they are taking more pictures. I have a slight view of the computer screen during that exam (depending on the angle of the picture). It’s crazy to see the images of my body lit up in different colors. Plus Joe can come with me for the bone scan – bonus, company!

The *hope* is that I will continue to show stability and stay on Xeloda, doing scans in another 6 weeks.  I don’t have any new pain, though I have been lucky that the pain hasn’t been unbearable aside from radiation. Honestly, I want to make it through the holidays and my January vacation without having to make any additional cancer related treatment decisions. But, we shall see.

So for now, we wait for all the different liquids to work their way through my system. My doctor will likely call me this afternoon with the results. Though I can never truly prepare for the news, I know that whatever it is, I will work through it with faith and determination. 

Stay well, friends. Continue to spread that love!  💚

Scan results…

Hey, so remember that time today when my MO called me to give me good news about my scan results?!

No internal progression!!

Yeah…I’m going to say that again…NO INTERNAL PROGRESSION!!

My lymph nodes have resolved and my bone mets appear stable with no progression. Yes, cancer but no progression – Yay!!!

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. 💚