I'm at a crossroads right now. I'm waiting to talk to Dr. Friedman about the Y90 procedure, risks, and scheduling. I met with Dr. Monica Mita at Cedars yesterday, a referral from Dr. McAndrew for access into clinical trials at Cedars. After waiting an hour and having a routine physical, which I find really odd since I was just suppose to speak with her about trials, Dr. Mita checked my medical history plus the gene mutation analysis from MD Anderson. Right away she told me that she had a trial for me to participate in. The trial is Phase 1 (part 2) - daily intermittent for determining the most effective dosing of the drug in patients. The FGFR inhibitor is a tyrosine kinase inhibitors. People in the industry are very excited by these inhibitor. After I first met with Dr. Moulder at MD Anderson she was most excited if I could get into one of the PARP inhibitor trials but it turns out that I wasn't BART positive or have the specific genetic mutation to be eligible. It turned out two years later, according to Dr. Moulder, that the later results were not as promising as the initial results so the trials stopped. The biggest risk factor in participating in a trial is disease progression and lost time. I'd hate to consent to the trial, participate for 6 months and then have disease progression and no longer be eligible for the Y90 procedure. This is my biggest fear about entering the trial. The reward could far out way the risk if the trial drug actually worked for me….
- A tyrosine-kinase inhibitor (TKI) is a pharmaceutical drug that inhibits tyrosine kinases. Tyrosine kinases are enzymes responsible for the activation of many proteins by signal transduction cascades. The proteins are activated by adding a phosphate group to the protein (phosphorylation). TKIs are typically used as anti-cancer drugs.
- They are also called tyrphostins, the short name for “tyrosine phosphorylation inhibitor”, originally coined in a 1988 publication,[1] which was the first description of compounds inhibiting the catalytic activity of the epidermal growth factor receptor (EGFR).
- The 1988 study was the first demonstration of a systematic search and discovery of small molecular weight inhibitors of tyrosine phosphorylation, which do not inhibit protein kinases that phosphorylate serine or threonine residues and can discriminate between the kinase domains of the EGFR and that of the insulin receptor. It was further shown that in spite of the conservation of the tyrosine-kinase domains one can design and synthesize tyrphostins that discriminate between even closely related protein tyrosine kinases such as EGFR and its close relative HER2.
It sounds very promising but for some reason I am not too excited about it. I'm nervous. I have a hard time lately getting excited about anything. I've had my hopes crushed far too many times lately. It's not the best way to be spending my mental time feeling sorry for myself but it's hard not to when the physical body isn't feeling well. I feel like I'm on borrowed time in so many ways. I'm having sharp and dull/achey bone pain, but the sharp pain in less frequent now, and a swollen abdomen which is the most challenging. The swollen liver is putting pressure on the rest of my organs and I can't tell if it is that fact alone or lasting side effects of the chemo that are causing major nausea and lack of appetite. I'm nauseous if I eat or if I don't unless I'm on a major dose of the hemp oil. I told Dr. McAndrew that I have no quality of life on this cargo/gem treatment and if it isn't working then please get me off and move onto something better. Onward and upward.
Last week I had a PET scan (insurance wouldn't cover the CT part, AGAIN, but McAndrew felt it still gives us an accurate representation of what is going on. So we have the liver MRI the week before that showed stability. Well, I should hope so since it was only ONE month since the last liver MRI. The second was the PET last Monday. The bone scan was on Friday. In between appointments I would sleep mostly. Lots of sleeping lately. On the one hand I feel like my body really needs the rest but the internal conflict I have with the guilt of not exercising or at least walking daily is starting to get to me. Walking is supposed to strengthen your bones. I was told to walk 2 miles a day. That would be ideal. I'll get there. I forgive myself for not walking lately. Today is a new day and I can take a walk any time on this beautiful day. I'm in a better mind set now to get out of this physical funk. If walking is all I can do then that is all I need to do.
This leads me to something that has been bothering me lately. It's so easy to judge others. The President and CEO of the Susan G. Komen Foundation wrote a
wonderful article called the "Metastatic Breast Cancer Conversation" in which she describes the challenges facing those with metastatic disease.
- Since there is no cure, we are always in treatment
- "Scan, treat, repeat"
- Metastatic breast cancer causes the majority of the 40,000 breast cancer deaths annually in the United States. The five-year relative survival rate for metastatic disease is only 24%.
- "Those who suggest that maybe these patients aren't "fighting hard enough" or didn't do something to prevent their disease."
The last point really doesn't sit well with me. It's easy for a healthy person to pass judgement or be critical of a sick person. It's easy for other sick people, who aren't as sick, to pass judgement or be critical of another sick person too. But we all have a different path. We each have our own journey. I remember being critical of Martha, my stage IV friend who died a few months ago. She kept saying she didn't have time to exercise but would instead grab a few beers and watch a game with friends. There are two ways to look at it. Shouldn't she have been drinking green juice and walking two miles a day after teaching all day on her feet? Should my other friend Annie, who passed away last month from Stage IV not have had a glass of wine with dinner or enjoy a BLT with actual bacon? You can't understand a person until you've walked a mile in their shoes, right? This is a also a quality of life issue. Do all cancer patients need to become vegan, gluten-free, sugar-free supplement taking, acupuncture, yoga and meditation loving clones during treatment? Or should we be doing the things we love since we don't know how much time we have left? As for living on borrowed time, I'd hate to go through everything I am going through (and then some) to lose my fight while not enjoying a good quality of life. Can I find that healthy balance of eating healthy and allowing myself some well deserved treats now and then? If you see us start to slip on our diet, drink a glass of wine, skip a walk to spend time with friends and family then please don't pass judgement that we aren't "fighting hard enough". I heard a man at a dinner part tell me that a mutual friend who fought and lost her battle with stomach cancer "just gave up, she simply stopped trying…" I don't think the mother, who was a mother to three young children stopped trying, she didn't throw in the towel or give up. She resigned herself to her latest condition and left the earth having made her OWN choices and tried HER best. Sometimes we need a break. Even soldiers get breaks. Stave IV metastatic patients don't get a break.
My yoga teacher was telling me that I looked like I just needed to get away, recharge the battery and have a break. She was the one who explained to me about how soldiers aren't allowed to stay in the battle field for too long at any one time. Their posts can be 6-9 months but usually no longer or they can literally go crazy depending on the field conditions. The day before she told me this I had watched the film 12 Years A Slave, I was of course sobbing like a baby. I thought how could people treat other human beings this way?! Well, the answers are most likely ignorance and lack of empathy but I couldn't stop thinking about Solomon Northrup. It's one thing to grow up as a slave and not know anything but these horrible conditions, to grow up free in New York and be smart and talented and then thrown into slavery. I made the terrible analogy that it describes so much how I feel at times being stage IV. To be young, healthy, and in my prime as a mother and then have it take away from me by cancer. I am a slave to this disease. I don't know if I'll ever be cured but so far I'm living on borrowed time as I jump from treatment to treatment. Cancer is a cruel, hard master who keeps you scared and anxious. If I continue on like this my kids will only know and remember a mother who wasn't often around, who was always at the doctor or hospital, who slept a lot, who "didn't feel well" most of the time, who couldn't help facilitate play dates, park and museum trips, and take them on adventures. I've become this shell of a person operating at a minimal level of activity. That really sucks.
This week I'll do more research about the trial, a spot is being held for me. I'll hear from Dr. Friedman on his thoughts for the Y90 radio-embolization procedure. I see Dr. McAndrew on Friday. I've emailed Dr. Moulder in Houston at MD Anderson to see if I can move up my appointment with her instead of waiting until 7/29. Perhaps they have some trials too. The thing that scares me about all of this is that I wish I could look into a crystal ball and figure out which path has the least side effects, less toxicity and is going to be the most beneficial killing the tumors. It is a wonderful thing, yes, to have these two options. Perhaps the choice will come down to the lesser of two evils.
The hemp oil has been very good for me. I'm off the zofram for nausea, off the tramadol for pain, off tylenol for pain, and no meds for constipation either. I'm figuring out how to best dose it so that I can still be a functional human being. The dosing is biggest at night when I am sleeping. Then I take a break during the day, unless I'm in pain or nauseous then I have the high CBD (low THC) tincture. The tincture does not give you a buzz or make you feel stoned. What has been difficult about the dosing and the ramping up is that I've noticed that the oil when put into a cellulose pill takes about 3-4 hours to really kick in (for the peak) then it goes back down pretty quickly. I'm still working on it but I'm sure that if I have the Y90 or consent to the trial that I will have to stop the hemp oil. (I think)…
I really hope everyone is enjoying their summer. I can't wait to get some answers and a plan in check so that we can take a long family vacation. We wanted to go away the month of August but if I do the trial then I won't be able to go for sure. Not sure what it would mean if I did the Y90 procedure instead…
I need to make some very important decisions but I also can't make then in a vacuum. I need more information, more research and more discourse with my physicians. H E L P. Where's that crystal ball?
