Sunday, July 30, 2017

Where did Caitlin Go Again?

Do not worry, I am alive. I just have been trying to spend less time on social media and on my laptop and more time reading and trying to stay busy in the house or outside the home with family & friends. Just some brief updates before I go on a long tirade about my medical issues. 1. On 7/29, I hit my 4yr meta-versary with metastatic breast cancer. 2. On 7/30, I hit my 7yr anniversary since finding the original breast lump. 3. I am moving into my 8th year of living with cancer and being on some sort of cancer treatment. 4. I started my 10th line of treatment on 7/28 and I just want some cancer to go away for a period of time. THIS IS THE SCARIEST MOST DEPRESSING PART IS THAT I AM JUST GETTING MORE CANCER EVERY MONTH SINCE 7/2016. 5. My medical oncologist is moving to Memorial Sloan Kettering in NYC and CT. I will be transferring my medical oncology care with her at Memorial Sloan Kettering in NYC, which also allows me to get my scans. If I do get some regression or stability on my current treatment, I can get my second dose of treatment in NJ (10min from our home) to save us the trip into NYC. 6. My radiation oncology & neurology team will remain at Cornell since they are the best & I trust them. So ONTO the medical changes that have happened in the last 30days.

Let's start with how things have been since my last post. I have more energy since kicking down pneumonia's butt while on chemo with stage 4 cancer. I had two more rounds of Navelbine in June & July and my tumor markers continued to rise. I also had my scheduled follow-up Brain MRI on 7/3 to check on the tumors that were radiated in April. Changes in my medical care will also happen, which will be bitter sweet. Since the tumor markers rose, I also went for an ASAP CT Scan on 7/18.

I will start with how Brain MRI went. I went to get my Brain MRI on 7/3, which was supposed to be reviewed that same day but both my Neurosurgeon and Radiation Oncologist were out on vacation, but I was scheduled to see both of them on 7/10 along with my Oncologist. It was a big day of lots of doctors. On 7/10, I saw my Neurosurgeon first that following Monday and learned good & bad things. GOOD NEWS was that my Brain MRI showed that all the spots that were radiated are either not visible or shrinking. Also the tumor bed from my Craniotomy continues to be without cancer. BAD NEWS is that there was a 1cm new tumor that was in my left Temporal Gyrus and had slight edema, so I had to go on a low dose of steroids and get myself prepared for more radiation. The more bad news was that when the bigger tumors vanished from Stereotactic Radiotherapy Surgery (SRS using Cyber Knife), they found 10 super tiny spots that apparently have been there since November. I was really pissed, but they did explain that my brain was shifted right, swollen, and had many 1cm tumors that were literally in clusters of 3-4 tumors that created significant edema which were hard to see in the November MRI but were a teeny tiny bit more present in January's MRI when my Neurosurgeon reviewed my past MRIs. My Neurosurgeon said I have 4 options ~ 1. Whole Brain Radiation (WBR) while I am on chemotherapy, on my off week from Chemotherapy. 2. More SRS at least to the new tumor with edema & possibly more to the tiny ones if my Radiation Oncologist felt it would be possible. 3. Change my chemotherapy or go on a trial for Brain Mets. 4. Do nothing and stay on my chemo. My doctor said that at the end of the day its my choice, but he is going to conference in my Radiation Oncologist and Medical Oncologist to come up with the best plan for me. I like how Dr. Ramakrishna lays out all options even the most ridiculous - "do nothing". I am never going to opt for "doing nothing," but he is fully aware some people do make that choice. I was more upset having to hear WBR as an option again, BUT I know that at the end of the day this decision would probably be one that I may not get the option to say NO to knowing how my Radiation and Medical Oncologist work when they feel things are urgent. My Neurosurgeon said things are not urgent, but he also did not read my body CTs and if he did its not his area of expertise but my Oncologists.

Off we went to my Radiation Oncologist and I was trying my best not to fixate or cry about potentially needing WBR as being my only option. It scares the ever living crap out of me and you only get one shot at if it comes back worse, you are up shits creek without at paddle. Well apparently WBR was off the table and my team of three doctors said that I will NOT have WBR. My Radiation Oncologist wanted to do SRS on the 1cm spot, keep a super close eye on those 10 tiny spots which we may target with SRS (Cyber Knife, what I have been doing) or Gamma Knife (SRS but you can get a bunch of spots in one day literally up to 30 depending on who is doing the radiation), but she believed that we may be able to avoid more radiation in the near future if we go outside the box with my systemic (medical oncology) treatment. My Radiation Oncologist said "You are getting SRS again for 1 session and you are going on Opdivo."

This is where the WHY questions start to flow in. My Radiation Oncologist also made me promise this past November that while I am under her care if she tells me I have to do something I do it, but can ask any questions. I agreed to that, so technically that is literally part of our doctor-patient verbal agreement. I also know she is super smart and would not put me in harms way...she is the doctor who sat with me, held my hand in a CT scan, and hugged me after I was scared from my first mask fitting.

Anyways, so I started to ask why Opdivo, which is a immunotherapy and is not FDA approved for breast cancer, yet. (I am going to post a link about my Radiation Oncologist's research in immunotherapy and radiation, but I will try to explain what she told me first.) My doctor said that her first reason is that people who have had radiotherapy where the tumor is still active but maybe stable or just radiated respond better to immunotherapy and have a longer life span than people who had 0 history of any radiotherapy. I have had a lot of radiotherapy, I am the female Mr. Burns, so I would be an ideal candidate to receive Opdivo versus someone who has only had a history of using chemotherapy in a Metastatic/Stage 4 setting.

I asked why Opdivo and not any other immunotherapy trials with radiation & the two she would recommend one has WBR and she feels I am "not there yet" and another trial she does not feel works with the blood brain barrier as well as Opdivo. My doctor said that Opdivo seems to cross the Blood Brain Barrier better than Keytruda, but they are similar drugs as they work similarly but one crosses into the Brain better. I said OK. I agreed to go on Opdivo and to the SRS & she reported that my oncologist was fully aware of this and is on board and I can discuss with her later that day at my Oncology/Chemotherapy appointment.

READ THIS Article (within hyperlink) its the SUPER SMART REASON WHY SHE WANTS ME TO DO THIS: 

I left the radiation oncology appointment feeling a bit of relief that I am able to do more SRS, but scared because I knew of no one who was on Opdivo and the people I did know on immunotherapy had no history of radiation in a metastatic setting or they were on Keytruda. I literally was becoming a case study based on results seen in my radiation oncologist's clinical trials that she has been doing for years. 

Off I went to meet with my Medical Oncologist, who never works Mondays in the office & honestly I was surprised she was able to make the time to see me (I was her only patient scheduled in the office that day). This is why she is awesome, she makes time when her patients truly need it. My medical oncologist and I discussed adding Opdivo which she was on board with, but most likely my insurance will deny it and we will have to apply for Patient Assistance Access through Bristol Myers Squibb to get me Opdivo, but she will have her staff work on it. Opdivo or any immunotherapy also tends to respond in people with multiple cancer related mutations in their DNA. Lucky for me I have about 15 if you combine both Foundation Medicine reports and the DNA analysis from Cornell that was done. Apparently the more screwed up your cancer is, the better chance you have at responding to immunotherapy. This made me feel less scared, I had my Radiation Oncologist's research behind me and I also have a mutated Cancer that just may need immunotherapy to kill it down. 

Long story short, my tumor markers did rise & I was sent for a CT scan the following week after I had Navelbine. The CT showed progression in my peritoneal lining (abdomen lining) and a little bit of growth in my pleural lining. Good news is Lungs are not affected and Liver tumors did not grow nor did the lymph nodes at my clavicle. The progression in my abdomen is quite scary and odd. I also have not been affected by it at all, which is also odd. I also have no ascites, which is odd and usually does happen when someone has cancer in the abdominal lining. My cancer goes places most breast cancers do not go and I seriously have ER+ Invasive Ductal Breast Cancer, which usually is slow growing and goes to the standard places - bone, liver, and lung.  

Since I had progression on Navelbine, we decided to move forward with the Opdivo alone (not with Yervoy) based on my Radiation Oncologist's suggestion and her awareness of how immunotherapy works & my doctors experience working with both in the clinical/research setting. My insurance did deny the Opdivo because it is not FDA approved for Breast Cancer. With the help of my doctors' staff, I got approval for Opdivo from Bristol Myers Squibb to get my medication for free. 

I had my first dose of Opdivo on 7/28. My doctor is on vacation for 3 weeks, so my nurse practitioner and another oncologist (who has worked with Opdivo for years) did my physical before I get immunotherapy for the first time & they also answered all our questions about the medication. Granted I was still nervous, but they calmed my worries. Off I went to get IMMUNOTHERAPY, which is something I kept hoping that maybe one day I would get and it would work on my cancer. 

What is Opdivo? Check out this video to learn about Opdivo. 

Opdivo is given every other week via IV for 1 hour. It does not have any premedication. You do get your blood drawn weekly and we have to watch my thyroid levels. Opdivo can affect the thyroid and I already have hypothyroidism. The side effects from Opdivo I was told are "tolerable and you mostly will have fatigue, joint and bone pain, and possible constipation." 

How has my experience been with Opdivo this weekend? I have had hot flashes and chills on and off, which is quite unpleasant because I will need an ice pack to cool me off and a heating pad to warm me up. I am not 100% sure if my fatigue is the same it was pre-immunotherapy, but I have minimal motivation to do much beyond basic chores. I also do not want to leave the house, have 0 motivation to cook, and I feel like showering is an effort. This "fatigue" could clearly be situational depression because of EVERYTHING that has happened with my health over the last year. I am not sure if it started the day after I got Opdivo or if it was progressing to this level of fatigue. I should ask Kyle later... Opdivo does cause horrible Joint & Bone pain, which improves if you are moving, but seriously I cannot be walking laps around my house all day without needing to rest. Although while moving I feel none of the pain, the pain does get worse after moving because now my muscles are tight. So far those are the only side-effects I have had thus far. 

I have no idea Opdivo is working on my cancer yet. I will not know until I have been on this therapy for at least three months as it causes an inflammation response at first (which affects tumor markers) and then you see a response. That is a longish time to wait to see if something is working when you have a lot of cancer, but my only options were throw more chemotherapy at me, because no trials could accept me due to having active untreated brain mets. Right now, I am just hanging on with a rope of hope and trying not to think about how my last two chemotherapies stopped working or did not work at all within 9weeks. I am trying to focus on the positives that my doctors told me about Opdivo and my individual situation with Breast Cancer. I am trying to remember the documentary VICE did in 2014 about immunotherapy and cancer & I never expected for it to be given to solid tumor patients or people who did not have a PD-1 or PD-L1 gene... apparently THAT gene does not matter much. 

Off I go into uncharted territory with three tumors in my small abdomen that I cannot feel and no one else can feel, with lungs floating in a little pleural fluid, yet none of the airways are obstructed (thank god), and with a brain that hides tumors. I need something to work to give me a "long run", which is what my medical team said. They said that we will go outside the box and give me something they have seen give the people with the worst prognosis a long run. I want a long run and I hope & pray nightly that maybe just maybe Opdivo will be the one. 

1 comment:

  1. I love you. We probably will never meet in person, but I really, really, REALLY cherish you. I hope optivo works miraclea for you, and many others. Someone posted about an Opdivo FB group and I meant to tag you, but got distracted before I could checknif you're a member of that group. :/ I will try to remember, and send you the info...just in case you haven't already joined that group. 😍😚