I have not blogged in quite some time. I have been plagued by this lack of motivation to do much of anything lately to be completely honest. My health has declined and my cancer has progressed, leaving me in this familiar yet uncomfortable territory. I had scans over a month ago showing progression in my abdominal lymphnodes, liver, and the lymphnodes in my chest. I was not really surprised by the news, I knew it was coming since the previous scans showed a mixture of both growth and shrinkage. So I knew this meant it was time to find a new treatment.
Clinical Trial Woes
As usual, I always look to the wonderful world of breast caner clinical trials to get an idea of what my options are. At this point, after canceling out all of my previous treatments, my best options seemed to be oral chemotherapy called Xeloda along with a Herceptin-like targeted oral therapy called Lapatinib. There was however a clinical trial going on comparing Xeloda and Lapatinib against a new stronger version of Labatinib called Neratinib, which would also be paired with Xeloda. I had also heard word that there was a new monoclobial antibody drug like TDM-1 that was going to be coming out in clinical trials soon called MM-302.
So the question at that point was do I go ahead with the Lapatinib and Xeloda not on a clinical trial, since it’s FDA approved, or do I give the clinical trial a try with a 50% chance that I will get Neratinib, the stronger version of Lapatinib, which is still an experimental drug…? It was clear that I couldn’t afford to just sit back and await the MM-302 trials to open up, but my doctor and I agreed that it was a good backup plan.
Politics & Protocols
The awesome thing about clinical trials is their long lists of rules, requirements, and regulations. After deciding to go forth with the Neratinib and Xeloda clinical trial I was thrown into this ‘dry out’ period where you cannot be on any sort of therapy for a certain period of time before starting a new clinical trial. In that time I had to have my copious amounts of blood work and scans required to start the new clinical trial, as well as to end/exit the current clinical trial. I also had to have a specimen of my original tumor that was being preserved in a block of paraffin wax somewhere in Beverly Massachusetts sent to the researchers on the clinical trial to make sure my cancer type fell into the parameters of this study. Since it took so long for the hospitals to communicate with one another I had to get another set of CT scans, since your scans have to be done within a certain timeframe before starting the trial.
The new scans showed more growth and some new spots in new lymphnodes in the abdomen as well as slight growth in the liver and a couple new lymphnodes in my chest. Woo hoo! At this point I was also experiencing a lot of pain, which I thought was my pancreas or gallbladder due to all of my past problems with pancreatitis from getting that stent placed in my common bile duct that my cancer was pinching closed. The weird thing was that my CT scans showed no pancreas or gallbladder issues, even though the pain felt very similar. My doctors then ordered me an abdominal ultrasound just to make sure. Still nothing alarming showed up. I had already been on my low to fat-free diet for weeks thinking it was my pancreas acting up due to the fact that I had been eating a lot more comfort food since the holidays and all the cold winter snowy weather. Since my blood work looked fine and my scans showed no problems or inflammation to the liver, pancreas, or gallbladder the plan was for me to just stay on the diet and to take pain medication as needed to handle the pain. If the pain grew worse I was to increase the dose to 2 pills, and if that didn’t help I was to let them know and look into going to the hospital for better pain management techniques.
No Go On The Clinical Trial
Back when I was in the hospital getting a stent placed in my common bile duct back in May of 2014 I was at the same point I am now, between treatment plans. My doctor had been trying to get me into the Eribulin, Herceptin, and Pertuzimab trial yet my liver enzyme levels were too high due to the common bile duct blockage. So to avoid having me on no treatment at all the doctor prescribed me the oral chemotherapy Xeloda and Lapatnib but told me to hold off on taking it till I felt like I could keep it down, because at that point I was throwing up everything, as well as bile. The day before I was admitted into the hospital to get the stent placed to open up my bile duct I took one dose of the Xeloda, which I’m pretty sure I didn’t even keep down. That moment right there and then ruined my chances to be able to be in this new clinical trial… that one friggin’ pill!! Because after the stent was placed, and my liver enzymes went back down, I was able to get into that clinical trial my doctor wanted me on in the first place and I disposed of the rest of the Xeloda and Lapatinib. Ah if I could only see the future, then I would have know not to take that stupid dose of meds thinking I was helping myself instead of messing with my chances of getting into future clinical trials.
I also later found out that the MM-302 trial that I was putting as a backup plan was not going to work for me either due to the fact that I had already been treated with the drug Adriamycin, which is the main chemo used in the MM-302 drug combination and apparently makes it so it does not work as well on people who have already been exposed to it. So there went my backup plan, leaving me with the only option of taking Lapatinib and Xeloda through my oncologist and not through a clinical trial.
I’m Apparently A Drug Seeker
As all of this crazy drama was going on, waiting to get in the clinical trial, finding out I can’t get on the clinical trial, and all that jazz, my pain was just growing more intense and radiating from my upper right abdomen to my spine, ribs, and shoulder blades. At that point I was on 2 Delaudid oral pain pills every 4 hours. I would wake up at three a clock in the morning with tears from the pain because the act of just lying in bed made all my bones feel like they were breaking from the weight of my body. I was having a hard time holding down any food, fat-free or not, not to mention the intense constipation from having to be on pain meds all the time.
Then, with my luck I realized that I had only one pain pill left and I still had three and a half more days till I was supposed to go into Boston to start the Lapatinib and Xeloda, where I could easily get more pain med’s from my doctor. However I knew that there was no way that I’d be able to make it through till Friday with no pain medication. So my choices were to drive 2.5 hours into Boston to get a paper script, knowing I’d still have to go back down 3 days later to start my chemo, or to go to one of the two local hospitals to get a partial script to get me by till I saw my oncologist. Since I had just recently moved back to the area after being out of state for over ten years I still had not found a new Primary Care Physician yet.
Let’s just say it didn’t look too good when I decided to go to the bigger local hospital with the better reputation even though it was a little further away. So when I showed up there and gave them my story it was apparent that all the physicians assistant on duty saw was red flags. He proceeded to interrogate me as to why I would choose their ER over the ER that is slightly closer to my house, he even asked me why I didn’t ask my old PCP from 10 years ago. Now I understand that he was only doing his job and that they have to keep a close eye on any narcotics they prescribe. The facts, however, were that I was in extreme pain, I have a terminal illness, I gave him all of my oncologists info, told him I was avoiding having to make multiple trips to Boston in the snow while in pain, and handed him my old prescription bottle (which actually still had one pill left in it) and he could see that the script was almost three months old. Either way he did give me a script for a few days worth of meds after telling me that if he saw me in his hospital again looking for pain meds that he would not be impressed and that it would look really bad.
I left the ER in tears. I had never experienced someone treating me like a drug seeker before. It felt horrible. I cried all the way home and the whole time I was getting the script filled. I can’t really tell you why I let his attitude get to me, especially when I have experienced far graver things in my life, but for some reason I did let it get to me. The pharmacist was very comforting though. She asked me why I was so upset and I told her, thankfully after looking at my past prescription fills in her database she assured me that I was not a drug addict and that some of the ER doc’s have big ego’s and treat everyone looking for pain medication like that. She actually told me I should report him for his attitude, but to be honest the only thing I wanted to do was to get home, take my med’s, and surround myself in my heated blanket.
Medicare: ‘D’ Is For Dumbass
So Friday finally came around and my father took me into Boston so that I could stay on my pain medications and not have to worry about driving.. As usual it was extremely busy there and there was a lot of waiting but I eventually got in to see the doctor and was told that my blood work looked good enough to start the new chemo, and that my latest scans showed more growth and a few new lymphnodes in my chest and abdomen. She then gave me the run down of how to take the oral chemo medication and wrote me some prescriptions for different pain medications. One of the pain medications was to be a long acting 12-hour medication, and the other was the same 4-6 hour medication that I had been on. She explained that by having the long acting med it would enable me to cut back on the short term med’s and keep me from feeling extreme pain every 4 hours when the short term drugs would wear off. This would also hopefully allow me to sleep through the night again.
Of course life would have been way too easy if I could have just gone down to the pharmacy and picked up my chemo and gone home in time to avoid Boston commuter traffic. When I got to the second floor pharmacy they said that they were still awaiting pre-approval. So I had to go back upstairs to let my doctor know what was going on, and since it was Friday afternoon and my insurance company is closed on weekends my doctor of course could not get through to the insurance company after several attempts and faxes. So I went home with no chemo, but they did say they would mail it to me when they got approval. So at least I didn’t have to go back into Boston in a day or two to pick up my chemo.
By the time I got home I was wiped, so I decided that I would just go to the local pharmacy on Saturday to pick up my new pain medications. However, I found out on Saturday that my insurance would not cover the long-term pain meds and that the pharmacy would not have enough pills to fill the short-term pain meds till Tuesday. At that point all I could think was how lucky my prescription coverage insurance was that they did not work weekends because I was not a happy customer. I was able to call their main line and find out that there are no long term pain medications that my insurance covers and that my only option was to have my doctor call or fax in on Monday stating why I need these medications and that there was a chance that they might reconsider.
So I spent the weekend taking the med’s I had left from the doctor at the ER. Thankfully, I had enough to get me through till Monday and the CVS allowed me to have my paper script back for the short-term meds so that I could get them filled at a different CVS that had enough pills in stock to fill my script. Fortunately I only had to go without pain medication for the afternoon and it only took me 8 hours to catch up to the pain to get it under control again.
I was so happy when I got the call from my doctor letting me know that she was able to get my insurance to approve the chemo medication, and was having their pharmacy overnight them to me so I could start them as soon as possible. She also said that even though they would not approve the long-term pain medication that she had originally prescribed, they would allow me to try a different one, and if that didn’t work then they would revisit the possibility of the other medication. Don’t get me wrong, I am ecstatic that they are letting me try something, ANYTHING, yet I am a little concerned because the long-acting pain medication they are letting me try is morphine, and in the past when I have had fast-acting oral morphine it always made me throw up and feel incredibly nauseous. So I am keeping my fingers crossed that that will not be the case with this medication. Thankfully she was also able to put the paper script in with the over-nighted chemo pills so I didn’t have to try and get down to Boston again.
As you can see my past month or so has been pretty crazy. And thanks to all the people out there that have abused narcotics in the past, for making things that much more difficult for others to get medications they really need. I do have to say the laws on pain medications, having to bring a hard copy in each time with no refills allowed, not being able to have an out-of-state doctor fax a script, and not being able to pick up a little bit of a script and pick up the rest at another time when the pharmacy you go to does not have enough pills in stock to fill the entire script. Yet at the same time a doctor can mail out harmful chemo medications to you, and can mail a hard-copy prescription to you, and anyone in the world that has an ID and knows your address and date of birth can pick up the filled script for you… It’s just weird loop holes like this that make absolutely no sense to me. It’s clear that these laws were only half thought out and I believe there has to be some sort of happy medium for those that really need these medications, those with terminal illnesses or diseases that cause chronic debilitating pain. I don’t know the solution myself, yet I do know that the laws in place now do not work. Thankfully I received get my script and chemo in the mail on Tuesday and filling it all went smoothly. Unfortunately, the medication has not seemed to help all that much but I am just hoping it just needs a little time for my body to get on the proper medication schedule.
I cannot even begin to describe the pain to you. Basically everything from below my breasts to my belly button hurts all the way around all the time. After eating anything, especially anything with fat, I will experience sharp pains under my right breast that radiate to my right side and mid-back. These sharp pains almost feel like childbirth contractions. My stomach is so on edge that sometimes without warning I all of a sudden cannot keep anything down at all. Other times I can keep things down but I have to deal with the pain that comes afterwards. On top of it all there is the bloating and constipation pain from all the medication, so as you can see it’s an all-around awesome experience… hahaha.
I am determined to get better and to get in better spirits. I am sorry it took me so long to write this blog post. I usually like to write a post when I have a little bit of positive news to mix in with the bad, but that’s not really the case this time, unfortunately. There’s always next time! Till then I’ll keep plugging away and try my best not to freak out on my insurance or any other ER doctors. I was able to start my chemo medications yesterday so hopefully, in time, they will work their magic and I will miraculously get better. No one knows what the future will bring, but I’m still holding on to hope that this situation will soon clear up and I will be able to go back to having a way better quality of life soon. Thank you everyone for all the words of support and encouragement! Your love is what helps me get through each day.