A little update….

 

I know an update has been in order but I haven’t been well enough to write. After 2 pretty good weeks in September, things started to crash again and I have pretty much spent the last 6 weeks in bed dealing with all kinds of pains, discomfort, and complete lack of energy. About one week ago, I had a draining tube inserted into my abdomen to be able to drain the ascites (fluid from liver) more often. This has been really good as I don’t have to wait to get it drained, I can do it from home and no more of the painful needles every time! So far, I have been draining 1 liter/day which sounds like a lot but my MD is not too worried. I had once again underestimated the recovery from the procedure but I am feeling a bit better now, except for this “on and off” fever which we will treat with antibiotics and make sure that there is no infection…

In my last blog post, I explained how I was after a combo of 2 drugs that had shown very promising results. I had then been put on a waitlist for a site in Denver. The last time I followed-up with them, I was told that they may lose their contrat. The research coordinator told me he would keep my name on the waitlist but he encouraged me to contact other sites as well. By that time, it was getting to be pretty obvious that I was not well enough to travel for a trial. I then asked my local oncologist if we could try to obtain the 2 drugs “off label” as they are already approved by the FDA and more and more people were successful going through that route. My doctor agreed and sent the paperwork to my insurance company. We were of course expecting a denial at first but I thought there was enough evidence to appeal the decision. However, after the initial denial, my doctor backed out. He gave me reasons like he was the chief of the oncology department and his cancer center had just bought another local cancer center and he felt like he didn’t want to put his license on the line by prescribing something outside of his scope of expertise. I offered to sign any document exonerating him if anything happened to me and even that was not an option. What really bothered me is that he has nothing else to offer me… He suggested asking my GI oncologist at Shands who is both a clinician and researcher and works within a institution that conducts research and has its own IRB. I was shocked to hear that his answer was no as well! His rationale was that with him not being part of the clinical trial, he would not have guidelines to deal with the side effects and all. After being interviewed by STAT news on how to choose clinical trials (https://www.statnews.com/2016/10/06/immunotherapy-cancer-clinical-trials/), I made some really good connections with incredible people in the pharm industry who tried to help me navigate this system. However, as the days and weeks went by, I was not getting any better and after doing a little more research, I found 8 people on my boards who had all been unsuccessful on the combo and many even had liver toxicity and with everything going on with my liver now, more stress on my liver is the last thing I need and so I had to made the difficult decision to not pursue trying the combo…

My next step is to meet with a palliative doctor to see how we could come up with a good medication regimen to help keep me more comfortable.

We have once again been very lucky to have “live-in” help. Many are asking how they can help and as of now there isn’t anything really… I am always happy to get cards but gifts/flowers make me uncomfortable. The best thing you can do is send me prayers, love, good vibes, strength & courage and all that good stuff! I don’t pick up my phone, I answer texts when I can and I haven’t looked at my FB inbox in a while… please understand if you don’t hear from me… I am also not up for visitors for now and appreciate your understanding.

Thank you for all the love and support – xox

 

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Dodging “THE” bullet

I have been trying to come up with the words to explain the past few weeks and the words won’t flow like they usually do… Six weeks ago, I saw Dr. D. who drained the fluid in my belly, a total of 1.7L was drained. As my friend said “that’s the size of vodka bottles I usually get!” lol!. The procedure went well and the ascites seem to have been under control with the diuretics so I am hoping to not have to get another “paracentesis” (the procedure to get it drained).

Things really went downhill from there.  My fatigue and exhaustion just kept getting worse and worse. For a few weeks, I was spending most of my days in bed, dealing with all sorts of abdominal discomfort and lots of nausea and vomiting. I then started to feel like my body was shutting down, as if it was crumbling inward. The littlest things required so much energy and made me even more exhausted. I would get up in the morning, take a shower and then take a nap to regain enough strength to make it to the kitchen and have something to eat. My appetite was very poor but I would try to force my self to eat a little, always hoping that it would stay down. My husband was truly incredible during these few weeks. He took over the cooking, cleaning, laundry, and kids stuff and never once complained. I was feeling miserable all the time and hated not to feel well enough to help him with anything. If I had been honest when people asked me how I was doing, the real answer would have been “I feel like I am dying”. I have never felt so close to death and for the first time in 3 years, I did not feel the optimism and hope that I usually feel. Some people in my online support groups talk about the things they do for when they will no longer be here. Some will get birthday cards for the next 10 to 20 years and write their kids birthday cards in advance, some will make videos of them so that their kids will remember their voice, others will make sure they have a special/meaningful gift for their children to remember them by, others will make photo albums. I have never had the urge or desire to do such a thing, but during those few weeks, I was thinking about it. Sadly, I didn’t even have the energy to do anything. Then one month into my new chemo, I had some labs done and of course I was hoping that my cancer marker would stabilize after being on the rise for a few months. Well, in one month, it skyrocketed and ended up being at the highest it has ever been, even higher than what it was when I first was diagnosed… devastated doesn’t even begin to describe how I felt. As I was laying in bed one evening, I could hear my husband and the kids having dinner and laughing together. I felt jealous that I couldn’t share this moment with them and for the first time, it crossed my mind that they would be ok, that whatever happened to me, they would be fine… this thought reassured me as much as it scared me. In one of my weakest moment, I had a difficult conversation with my husband and told him I was “done”, 3 years is a very long time. He made me promise to go as far as I could go on this chemo and try one more trial. I agreed…  Fred came to my next Dr.’s appointment. I wasn’t sure if the doctor would stop the chemo given the rise in my marker. This is pretty much the end of the line for me, I have exhausted all the chemo options. I felt so weak that the thought of trying to get into another trial was overwhelming. My doctor wanted me to continue on the chemo until my next scan which was scheduled last week. We would then figure out the best option from there. I have written about a combo of drugs which is very promising for colon cancer that is said to be MSS (what I have). However, the Phase III trial sucks and you only have a 50% chance of getting “the combo”. There is no site (as of now) in Florida and there was no way I was willing to start traveling for a 50% chance of getting the combo. I asked my doctor if he was willing to prescribe the medications “off label”. Both of these drugs are FDA approved for other cancers but not for colon cancer. My doctor can prescribe them but the question is whether my insurance will cover them. Some people in my online groups have been successful at getting their insurance to cover the drugs, so I thought it was worth a try. Getting the combo without having to travel would make it so much easier on me! I guess we could still petition the drug companies to give me the drugs on a “compassionate care” basis but given that they are hoping to have a major breakthrough with these drugs, the chances of them agreeing are probably close to zero! Paying for them out-of-pocket would probably run around 30K per month… My doctor agreed to start the process and see if my insurance would cover them. I then mentioned to my doctor another trial with “the” combo in addition to another drug I have been on before. It is a Phase 1 trial in which I would be assured the combo. My doctor seemed to think it would be a good idea. After we reviewed these options, my doctor told me he was willing to talk about the “other” option when I was ready… I knew what he meant… he meant hospice. I was actually going to work for a little after my appointment and so I told him I was not ready… this is how bad things were…

What happened from there is difficult to explain… I have described a little bit before how I was leaving no stone unturned and have been doing “energy” work. I had a session with the 3 most powerful human beings I know and the very next day, I started feeling a difference. Ever since, things have started super s-l-o-w-l-y to improve. It is very subtile with some better days than others but the change was drastic, I right away stopped feeling like I was dying. I feel like I just avoided the death bullet. Is it the chemo that somehow someway started to kick in or is it the energy work? – who knows but what matters is really that I am starting to feel better. Last week I went to Gainesville to see my GI oncologist. I had not seen him since January although we had been in constant contact. I had a scan on Wednesday and then met with him the following day. To make a long story short, I am being interviewed by a reporter about clinical trials and I invited him to attend the appointment with my doctor (with my doctor’s approval of course!). I have never left Dr. G’s office feeling down, he always seem to find hope and options when there aren’t any and so I was very eager to see him! The first thing he told me was that my scan was “stable”! This was such a huge relief after the increase in my marker and after a few months of continuous growth. That was a great way to start the meeting. We then delved into the options moving forward and the one that makes most sense is the Phase I trial of  “the combo” mentioned earlier. The trial only has 2 sites and they are looking for (only) 30 patients or so. The study is not yet recruiting yet but both sites have wait lists to get in! I contacted them both and the one in Denver seemed friendlier and people were better at getting back with me. I have managed to get myself on the wait list without having to fly out there for an in-person consult and I am now waiting to hear from them about a potential start date for the trial. I will then need to fly out to be screened.

So this is what has been happening and why I have been so quiet. I probably still have messages to return and apologize for not always getting back to you guys but I am sure that after reading these few lines you will all understand!

Forward, onward, and upward I go. One day at a time, one hour at a time, sometimes one minute at a time…

Here it is…

It took me a while to digest and process the news, to go through the waves of emotions and get my thoughts back on straight. I traveled to the NIH at the beginning of August and had another scan. The scan was finally going to tell us if the symptoms I had been experiencing and what we had seen on the last scan one month ago was disease progression or tumor swelling from the drug working. I was actually quite optimistic for different reasons but mainly from the fact that the intense liver pain I had experienced in June was gone. I had really thought that if the pain was coming from disease progression then it would not just magically go away. I had a ton of blood work done and the scan Monday afternoon and was meeting with my team the next day. I peeked into the patient portal Monday night to look at the blood work results. The first result listed was my CEA (cancer marker) and I eagerly clicked on the link… it had almost doubled from one month ago… I knew this could not be a good sign. I was a little encouraged to see that my liver enzymes had started to come back down. I was worried about one in particular that had consistently gone up and was relieved to see that it had come down a little. After a restless sleep, I showed up at my appointment to hear the news I did not want to hear. Everything had continued to grow in the past month so obviously the NHS-IL12 didn’t do anything for me. I kept it together for a little while but then just couldn’t hold the tears back. Part of me just did not (and still does not) understand. If there was growth only in my lungs, I think it would have made sense but the liver is a mystery. I had the radiation beads procedure at the beginning of May and it had looked like I had responded well so how could things be growing so quickly? I told the doctor that I was wondering if the drug had almost the opposite effect on me and just ended up being rocket fuel for the tumors. He acknowledged that he could not say for sure that it was not the case but went on to explain that this pattern of growth can be “normal” for people past 2nd or 3rd line of treatment, which I am. I must have experienced all the emotions possible while sitting there. I started feeling angry at the fact that I had given my ALL to partake in this study and how frustrating it was that now that I had finally reached the easy part of the study, meaning that if the drug had worked, all I would have needed was to travel once a month for just one day. Since the beginning of June, I had gone to the NIH 7 times, had given gallons of blood, undergone 2 painful biopsies, endured many days in bed with a fever and headaches, had my liver take a huge hit and so on and so forth… only to be in a worse shape than when I started…

I really need to keep in mind that my doctor never sold me this trial as a magic bullet so I knew from the start that it would not be my ticket out. From my initial meeting with him, I understood that at best, it could keep me “stable” for a while. As I explained in an earlier post, there were still good reasons to try and the fact that I had just had radiation was a huge one… Hindsight 20/20 maybe this was too much for my liver and now I am afraid that we have really made things worse. My poor liver is showing serious signs of distress… My NIH doctor was understanding and empathetic and we explored a few other options available. There is another trial I am eligible for at the NIH which would actually be a good logical next step. They showed me the schedule and the first 8 weeks are pretty intense and would require a weekly trip and then it would still require a trip up there every other week for at least 2 days at a time. I told them that I was interested in it but that I wanted to talk to my Shands doctor first and see what his thoughts were.

I just couldn’t wait to get home but my flight was not until the evening as I had planned enough time to get the drug if the results had been good. When I got to the airport, my flight kept getting delayed and at about 9pm, we were told that our new ETA in Orlando was 2am. There was no way I would be able to drive home at that time and so I knew I would need to get a hotel room at the airport. When they offered to rebook us on a flight the next morning, I decided to get a hotel room in DC and try to get some sleep there. So I finally got home early afternoon Wednesday. The joys of traveling… As I was walking in the door, my Shands doctor was calling. As usual he was super sweet and I could tell he too was very disappointed that the trial had not worked. In the end, there were only 2 viable options: 1) that trial at NIH or 2) the chemo pill I had almost started before I ended up getting in the trial (Lonsurf). He advocated for the chemo for a couple of reasons but mainly to give my body a break from all the traveling. The side effects of the chemo are known so we know what to expect unlike the trial/experimental drug. The Lonsurf is known to keep people “stable” and has not shown much success at shrinking tumors. On average, when people respond, it tends to work for 3 to 6 months (that’s average) but some people don’t seem to respond at all. At least we should know pretty quickly. Then we could revisit trials and see what is available then. He mentioned a trial starting in November in Gainesville which would be a good match for me. When I pressed him about the NIH trial, asking him if he thought that it had a much better chance at a positive outcome (vs. the chemo), he ended up saying “you are not going to like this but it’s pretty much a coin toss” –

So as much as I don’t want to go back on chemo (this is the one that will make me lose my hair “again”), I think it is a smart strategy. I have been feeling completely exhausted and pretty run down that I am not sure how I could find the energy to have 8 weeks of intense travels to DC. The kids are just starting school and I would much prefer to be home and get them settled in, especially with my oldest starting middle school. I spent all last week at camp Kesem and started the chemo on Monday. Everyone at camp was super accommodating and I was able to rest plenty in between the periods of time when they needed my help. The sucky news combined with how weak I have been feeling ended up making me feel pretty devastated about the whole thing. I of course still try to keep my head up for the sake of my kids. When I picked them up from camp the day I came back from DC, I asked them if their dad had told them the news. They said “what news? that it didn’t work? yeah he told us”. Then the next question that followed a few seconds later was “hey mom, what’s for dinner?”. I guess they are getting used to the bad news! As I said before, every time I get knocked off my feet with bad results, it seems to take me more and more time to get back up. It is definitely getting harder to get back up and keep on going but I know I will find my strength once again and will keep on keeping on…

I now need to take care of my poor liver… I found out from the last scan that I now have “ascites” which is basically the accumulation of fluid in my belly causing it swell. Basically I look like I am 4-5 months pregnant and feel like my belly is about to explode! Many people say it is quite painful, but for me it’s more uncomfortable than painful. Thankfully I have Dr. D (yes my one and only Dr. D) to the rescue! I will be seeing him tomorrow for a procedure called “paracentesis” where he will insert a needle in my abdomen and drain the fluid. The fluid will then be sent to a pathology lab and the results may help us figure out the exact cause. Next will be a visit to my GI doctor to see what else can be done… The results from my labs today are encouraging, my liver enzymes keep coming back down so hopefully we haven’t crossed that line of no-return. The liver is such an important organ and can take on a lot but once it reaches a certain point, it may be too late…

So I was joking with Dr. D today, telling him I couldn’t wait to get my amniocentesis and find out if I am having a boy or a girl! Fingers crossed for a girl! hahaha… My husband told my oncologist this morning that he had “nothing to do with it”! It was pretty funny! My hubby has been so strong for us, so patient, and so compassionate. I am so very lucky to have him by my side… I love him more everyday…

The bluebird of happiness… or the red bird of cheerfulness?

I feel like I had a “bluebird of happiness” moment during my last stay at the NIH. For those of you who remember seeing the movie K-PAX, starring Kevin Spacey, you may know what I am talking about. In the movie, Prot, the main character is either a legitimate patient in a psychiatric institute or he is genuinely an alien from the planet K-PAX. Prot tries to cure his fellow patients by given them tasks and one of them (Howie) was given the task to wait for the bluebird of happiness. After patiently watching the sky through the window for several days, Howie spots a blue jay perched in a courtyard tree and becomes euphoric and starts chanting  “Bluebird! Bluebird!” along with all the other patients.

One afternoon while at the NIH, I decided to go for a little walk outside to catch a breath of fresh air. As the brightness of the sun and heat seemed to make my study drug  induced headache worse, I decided to go back inside and find a place to sit and just chill. I found this quiet little place overlooking one of the courtyards. I sat comfortably and started typing away my next blog post. At some point, I took my eyes off my screen and saw this male cardinal on a rooftop beneath me. I had the feeling it was looking at me with its head to the side, kind of like when you are staring at someone you think you know but are not too sure if that is them or not. It kept walking towards me and I just had this feeling that it was coming specifically to see me and then it hit me! About one month earlier, as I was leaving the NIH after my week long stay, I was sitting outside on a Saturday morning, waiting for my cab. Everything was so still when typically the front entrance of the clinical center is always hustling and bustling. I was enjoying the warm rays of the sun and the crisp air when a male cardinal walked up to me. I had had the same exact feeling, as if someone or something was sending me a message but I just didn’t know what it was. I thought to look at the meaning/symbolism of the cardinal but then forgot. This time I knew I needed to and I started googling it right away.

I know we can find connections everywhere if we look hard enough but for those of you who know me, you know that I believe in the power of symbols. In general, the cardinal represents the spiritual values of hope, cheer, pride, love, and renewal. I thought I was off to a good start! Unlike most birds, cardinals do not migrate but rather brave and withstand the cold winters which demonstrates their vitality, strength, and resilience. According to other sources, cardinals remind us to hold our heads high regardless of circumstances and always exude humble confidence. They can remind us to “keep the faith” though circumstances might look bleak, dark and hopeless. Cardinals remind us to follow the hope in our heart on our upward journey through the cycle of life. Also, the call of a cardinal can come to cheer us up, or cheer us on. So I want to say thank you little cardinal for your visit. I will keep my chin up, I will keep the hope and faith, and I will keep finding strength and resilience from within. Thank you for cheering me on!

One more thing I found out about cardinals is that they are associated with the number 12. Cardinals are seen during all 12 months of the year and their eggs typically hatch in 12 days. Well… do you remember the name of the study drug that I am on???? It is called “Interleukin-12”!!!! Coincidence or not? you decide….

I’ll be looking for you next time I am at the NIH beautiful little red bird of cheerfulness!

Navigating uncharted territory…

Cycle #1 of the study drug is officially done and I am now starting the 2nd one. I must admit that cycle 1 hit me harder than expected and I think harder than my team expected. When going over the potential side effects before I started the study, I was told that most people had minimal symptoms. Fatigue, headaches, and fevers were the most common ones. The consent form did mention lowered white blood counts and platelets and elevated liver enzymes and so when I had all the symptoms above I was not worried. In my case though, I have also had pretty intense waves of liver pain. The pain would last a couple of days and be accompanied with fevers but then it would dissipate. I know my doctor was concerned and I loved that he was always an email away and would always respond promptly to my (sometimes neurotic) messages. When I came up for the week 3 blood draw, he ordered an ultrasound of my liver but I knew it would not tell us much, ultrasounds can’t see much on the liver. At least they were able to rule out an abscess and saw that my liver was a little enlarged but within the normal “upper limits”. My energy level has been pretty non-existent and this has been quite frustrating for me. Even during my toughest chemo treatments, I always seemed to bounce back but this time I was not seeing the end of it. According to the protocol, the first scan was scheduled for August and we had to decide wether to scan earlier or wait. The dilemma is that when you are in a study and they see progression on a scan “progression” from the disease (i.e tumors growing), they kick you out of the study (typically with 2 consecutive scans showing progression). The tricky part here is that the symptoms I have been experiencing are exactly the same symptoms as disease progression (fatigue, fever, pain). As I mentioned in a previous post, the fact that I had radioembolization to my liver right before starting the study is blurring the whole picture. When I say I am navigating uncharted territory, I mean that I am trailblazing here. We have no data to compare this with, no one had radiation to their liver right before they entered the study. As I also explained, we have been thinking that this may be in my favor as we know that radiation and immunotherapy can synergize and boost each other’s effects. So what I am experiencing *could* be a good thing.

I met with my doctor on Tuesday as I was being re-admitted for cycle #2 and we had a long discussion about this. My cancer marker came back significantly higher and it even took me by surprise. I knew it was a possibility but the fact that it had tripled really cut me off guard and had me in tears. I was able to pull myself back together to continue discussing the best plan of action. I must say though that inflammation can make this marker go up so it was not really giving us anything tangible to work with. We all agreed to go ahead with the scan. The caveat though was that the scan might not be able to tell us much more. If the spots were bigger, there was really no way of knowing if they were bigger due to inflammation or progression! Ugh! I wish medicine was more like mathematics with black & white, clear cut answers! What I really wanted to know was if there was anything “new” either on the liver or lungs or elsewhere as well. My doctor then explained that the biopsy I am scheduled to get next week *might* be able to elucidate us more. If they find more T cells in the tumor tissue (from the baseline biopsy) this will be in favor of the drug working. I also want to mention that in many other immunotherapy trials, researchers have seen tumors “swell” before they “shrink” and that it can take a few cycles before they saw clear evidence of the drug working. Of course I do not want to continue a treatment that is not working but how much time are we willing to give it to see if it works? What if by fear we stop when it could have worked and when do we continue and make things worse? eenie meenie myney mo…

I had the scan done Wednesday and my doctor said he would do all he could to come back and see me at the end of the day. When 5:30 pm rolled over, I thought I would not hear back from him until the next day. I was really shocked to see him show up at 6:30 pm with the nurse practitioner. He still had not seen the report but had taken the time to look at the images and compare the scan with the one I had one month earlier. His take on the whole thing was that “all the spots had grown” but more markedly on the liver. He still indicated that the inflammation hypothesis was not off the table. I had to make him repeat these words and then I was able to start to breath more easily again. Despite the scan, we were still in the dark. He agreed to discuss this with my Shands oncologist and we had my disc overnighted to Dr. D. who had done the radiation beads procedure. I believe that Dr. D. knows my liver best and not every radiologist truly understands the radiation procedure so interpreting the results on my liver is very difficult. I surprisingly remained pretty calm and composed and slept pretty well! I flew home yesterday and finally heard back from Dr. D. He is in the same position as all of us, not truly understanding what we are seeing. Most importantly, what I got from his impressions was that 1) there was nothing new (no new growths on the liver, lungs and anywhere else), 2) yes the spots on the liver are bigger but the way he described it in laymen’s terms is that the spots didn’t have the typical “symmetric” appearance but they rather appeared “patchy” (this could be a good sign), 3) the lungs nodules are still super small and he can’t tell on a CT how much necrotic tissue there is, 4) we both agreed that this not how the cancer has typically spread in my body in the past, typically when I had progression, new spots showed up. He agrees that a biopsy is the way to go. I hung up the phone feeling optimistic and hopeful. We know the biopsy may again leave us in the dark but the more data we can gather the more chances of getting an answer we will have. I am flying back Monday morning and coming home Wednesday late evening. Time to chill home with my boys, hubby, and sissy who is here helping us out!

To be continued!

1st Injection Down!

What an interesting week at the NCI spa! I ended up spending all of last week there. Although I was admitted to a “hospital”, I never felt like I was being treated like a “patient”, I rather felt like I was treated more like a “guest”. I feel like the rules were a bit more “looser” than in a regular hospital and thankfully for me, given the protocol that I am on, they did not have to monitor me all day and all night long so I could at least get a “good” night sleep without being woken up every couple of hours to have my vital signs checked.

My week started off with a liver biopsy. About one month ago, I had the Y90 procedure done on my liver and it turned out that 1 (maybe 2 spots) had not been been hit by the radiation beads making these spots the only candidates for the biopsy and of course, the one that was for sure still alive was the trickiest one to get to. This spot was up high on the left side of my liver, close to my heart. I think by now everyone knows how much I adore my “Dr. D” and I would have trusted him in heart beat to perform this biopsy. I didn’t have the choice in using one of the NCI interventional radiologists. I actually tried to find out which one would be performing the procedure so that I could “google” him ahead of time but I was told that I would get “whoever was on call”. I really think that NCI attracts top notch researchers but I wasn’t sure about their medical doctors. Having had worked in a State Hospital where most of the doctors were not stellar doctors, I must admit, I was a little worried. Monday morning I was wheeled into the radiology department and met with my assigned IR. As I was sitting in my little gown with a warm blanket over my shoulders, he started reviewing my case in complete silence. When he seemed like he had devised a plan of action in his mind, I asked him if he had seen the pictures Dr. D. had sent with the 2 spots circled to help them identify which spot to biopsy. This was news to him and he started paging all the doctors on my research team who were all attending the big ASCO meeting in Chicago. Finally, he just flipped through the pages on the clipboard with my information and the pictures were right there! He stared at the pictures for a while and started opening my last 2 scans on the multiple monitors in front of us trying to zoom in and see the spots more clearly. I could see he was scratching his head and I started really missing Dr.D.! After a while, he came up with the following plan: he would first start with a fine needle biopsy to extract cells from the tumor. He would then have the lab people stain the cells right then and there in the procedure room and if it was cancerous then he would perform the  “core biopsy” to extract more tissue. I thought that was a good plan and that got me reassured! Everything ended up going well and other than pretty intense pain for a couple of days the rest was uneventful and I was pleased with Dr. C.!

The next day I was scheduled to get the study drug, a simple little injection in my belly. Before I received the study drug though, tons of labs had to be drawn. I have had my infusion port for 3 years now and have never had any issues with it. Of course, the day that I needed it the most (they had to take blood every 2 then 4 then 8 hours) it stopped working! My nurse was ultra patient, tried different strategies and at some point, got it to work but the blood was practically coming out drop by drop! It took forever to collect all the blood they needed but she was super patient and never complained. She was able to make it work again after letting a solution called TPa sit in the line for a few hours to “declot” it, kind of like Drano for your household drains! I was so grateful that she got it to work again as my arms were getting tired of getting poked.

My doctor had told me that it would take a couple of days for any of the side effects to appear but the very next day, I started having a pretty intense headache and then I started feeling feverish with chills and hot flashes. He even made sure I didn’t have any infection going on as he thought it was “too soon” to have side effects. Those side effects continued and intensified and then I started feeling achy all over, pretty much like when you have a bad flu. By Saturday I was feeling better and felt confident that I could make the trip back home fine and I did. I was so happy to be home, to see my boys, my husband, and my 2 nieces who came down from Quebec to help with the boys. Interestingly, that night, I spiked a fever and had one of the worst liver pain I had. Liver pain can refer to the right shoulder. This has something to do with nerves sending wrong signals to the brain, giving misinformation about where the pain is originating from. I have experienced that referred shoulder after certain liver procedures in the past, it is a distinct type of pain so I have learned to know what it is when it strikes. By Sunday, the pain in my shoulder was so intense that I could barely get out of bed. I pretty much rested all day and woke up Monday feeling surprisingly pretty good. I got in touch with my team at NCI and told them about the pain I had had and requested to have a liver panel done when they would do the blood draw today. Oh yeah, did I mention that I had to go back to DC today (Tuesday) JUST for a blood draw!!! I guess this is a specific type of blood draw that needs to be processed in a very specific way so I could not have it done locally! My doctor responded right away, they were already planning on checking the liver and I like that he was super proactive and said that if the pain continued or came back, that he would like to get another CT scan but since I was fine yesterday, we decided not to do it. I think this pain is very unusual for this study drug but I have my own hypothesis. As I mentioned in my last post, the study drug binds to necrotic tumor cells. Given that I just had the Y90 procedure, chances are that there are a lot of dead tumor cells in my liver. Both my doctor and I had the same thought, that having had this procedure might boost and enhance the effect of the study drug. So if you ask ME, this pain is super positive, it means that the drug is working!

So here I am in DC, just waiting for the shuttle to take me back to the airport. I will be coming back again next Tuesday for more blood work and then I’ll get a week break until injection #2 in July.

Keep on keeping on…

 

It’s a GO!!!

What a busy past few days! Thanks to the kindness and help of friends, my trip to DC went very smoothly. I was picked up by the NIH shuttle at the airport and since I was the only passenger, the driver kept me entertained and offered all the tips he could about NIH. Upon our arrival to the campus, I had to exit the shuttle with my luggage and go through security and get a badge. The driver had told me how nice everyone was and how it was everyone’s goal to make our stay as “good” as possible. You never know what to expect when you are about to enter a governmental facility but I must say that I was pretty impressed. The shuttle driver even offered to drop me off at my hotel on his way to refuel the van, that was very kind of him.

My first day at NCI was quite challenging as I woke up with pretty intense nausea. This is not something I usually deal with and I was totally unprepared for it. I have a feeling it could have been the not so good sushi I had for late dinner the night before. Obviously it could have been stress but I didn’t really feel stressed out so who knows? The NCI building is huge and let me tell you, having to find a bathroom quickly when your sip of water is coming back up is not too fun… but I managed to survive the day! After all the paperwork, blood work, and EKG, I met with the study nurse practitioner. She too was really nice and compassionate and she even offered to get me some zofran for the nausea, what a relief! After going through all my history and doing a physical exam, the doctor came in.

Dr. H. is a young (well I would say probably around my age – so my kids would say “old”!), smart, and personable doctor. He seemed easy going and pretty laid back. He started off by asking me if I had any questions! I chuckled and told him that my oncologist had most likely not prepped him for me! I showed him my page long list of questions and we went from there! He explained in details the rationale for the study and what the drug was supposed to do. He lost me a couple of times but I think I did a pretty good job at staying with him and I think I asked a few pretty smart questions! (despite not feeling at the top of my game…)

There is no “perfect” trial because if there was such a thing, it would not be a trial but we would be talking about a cure. So we of course talked about the pros and cons of the study. I think I was bit taken aback to hear that the results had not been as promising as I thought they had been. My GI oncologist had mentioned the word “shrinkage” (not just stability) and this is something that I had gotten me quite excited. Dr. H. told me that they had seen stability but not shrinkage. They have only observed shrinkage in petri dishes and in animals, not yet in humans. This took me by surprise and at some point I almost felt like I was fighting back tears. I had travelled 900 miles for something that I thought had the potential to “maybe” put me into remission and then there, very matter of factly, I was told that this would not be the case. This lead us to discussing other ongoing trials for colon cancer with the specific mutations that I have and the bottom line is that there is nothing very exciting at the moment, although there many new trials in the works. There is actually another trial at NCI that is interesting but they are now closed for renovations of their lab and according to this doc, it will take a few months before it reopens, maybe even “many” months… The other phase 1 trial I was interested that closed actually just announced yesterday that they are skipping a phase 2 trial and are moving to a phase 3 randomized trial which should speed up the FDA approval of this combo. This was the talk of the town yesterday with everyone being super excited… except me… randomized means you may or may not get the combo. In this specific trial, there will be 3 arms so it would basically be 33% chance of having the combo AND the worst part (in my mind) is that you also have 33% chance of receiving a drug that I have officially crossed off my list. The side effects are horrible for very little benefit – actually a paper came out a few months ago and it said that it had “no added benefits”. If I was not in need of this combo in the immediate future, I would be thrilled like everyone else but I need it sooner rather than later so for me this news sucks… a phase 2 trial would have been better… anyways I digress and let me come back to the trial I was just screened for!

Here is where it gets interesting despite the “no shrinkage”. As I said before, I like the idea of having a foot into the NCI system. If I enroll in the study, they will be doing a “fresh” tumor biopsy. For the purpose of this study, they will not be looking at specific mutations within the tumor, they will instead be looking at changes within the tumor from the study drug. However, Dr. H. said that they could keep some of the tissue and that he could send some slides to any other trial I would like and we even identified one that could be interesting.

About 30 patients have been enrolled in the study so far, with only 8 who had colorectal cancer. Of these 8 patients, only 2 have had a really good response (long stability, one has been stable for 6 months and the other 12 months). One patient with I believe prostate cancer has been at it for 18 months… A year of stability without chemo sounds pretty sweet to me! I also think that I have a few factors playing in my favor. 1) The initial patients who participated in the study were reportedly quite ill. As this is a “dose escalation” trial, these initial patients were given the lowest dose of the drug. I was able to find out that the dose that I will be getting is pretty much the closest to a therapeutic dose as it will get. So I think that I am overall in a better shape and will be getting a higher dose than the initial patients. Talk about being at the right place at the right time (for once)! 2) This is a bit more technical but when reading about the drug being studied, it explained how it binds to “necrotic tumor cells”. I asked Dr. H to explain what that meant and if that meant that it only worked if we had necrotic (dead) tumor cells. He went on to explain that all tumors have necrotic cells but he had the same thought as me. Since I just had the Y90 procedure done, chances are that my liver has quite a bit of necrotic tumor cells and there is a chance that this could boost the efficacy of the drug. I then asked what that meant for the lung nodules and he explained that it would have a systemic effect, meaning that the boost to the immune system would not be specific to the liver but to the whole body. 3) Lastly Dr. H indicated that he had seen cases of patients who had stopped responding to the drug and went back to prior chemo that had stopped working to find that it was working again. He believes that the drug could potentially “prime” the body to respond to other agents and especially other types of immunotherapy. So the more we talked about it, the more I saw the benefits of enrolling. Whatever helps keep me going! As an added bonus, I get to keep my hair a little while longer which to me is actually pretty huge! And finally, I will be monitored super closely and won’t have to fight my insurance to get the scans and procedures approved! That’s all good!

At the end of our meeting I asked what was left to check off the list to determine if I was eligible. They needed to get the results of the HIV and hepatitis tests and I was not worried about these 2 whatsoever! So the last thing that was really left was to make sure that I had a squeaky clean brain, meaning no tumors on the brain. I was scheduled for scans the following day. I naively mentioned that I had never heard of CT scans before used to diagnose brain mets. This lead to a long (and pretty anxiety provoking) discussion on brain mets. Typically colon cancer does not go to the brain but it happens (typically after having lung mets for a while). I have heard a few stories lately of people who ended up with brain mets, like my dear friend Kenny who has been my colon cancer buddy for the past year. I am still sick to my stomach thinking about how in March he made the trek to NCI from the other side of the country only to be told that they had seen suspicious spots on his brain and that he was not eligible for the trial he was trying to get into. With my luck these days, of course it had crossed my mind. Ever since I have heard of my friend’s news I have been wondering whether I should ask for a brain MRI but I have been too chicken to bring it up to my doctors. As much as I am not sure how many more bad news I can handle right now, I guess this would be the way to know for sure (and again without having to fight my insurance!). The next question was wether a CT or MRI was more appropriate. MRI is more precise but apparently they can also tell with a CT with contrast. Since there was no MRI available, we decided that a CT would do the job. I was almost relieved – maybe it’s better if they can’t see that well! haha! I had the scans done yesterday and made it home quite late last night with the understanding that I would know today if I was a candidate. I was so happy to be at work today, a much NEEDED distraction when you are waiting for a phone call that will tell you wether or not you have brain mets. I did pretty well until 3pm. By then, I had not heard anything and was starting to feel pretty anxious. I sent a couple of emails and said: “hoping that no news is not bad news…”. Finally at 4pm, I received an email saying “no news is great news”. You just can’t imagine how relieved I was, I was so ecstatic! Finally some good news after the streak of crappy news lately! Phew!!! So I am going back next week for the first dose and will need to stay for a few days for observation and monitoring.

Never been so excited to be a lab rat!

Next Chapter

Ready or not, here I come…

Well I have tried to postpone this time for as long as I could but the time has now come. I had a scan last Friday (after fighting with my insurance once again!). I wasn’t really concerned about the results of the Y90 procedure, I was more interested in finding out how “the rest” was doing. I knew I had stopped responding to the maintenance chemo from the progression in my liver. Now the question was whether there was progression on the lungs and also were there any new spots elsewhere. I guess I was prepared for the worst as it seems like lately things have been going downhill. I met with my doctor on Monday. He is pleased with the results on my liver so far but he had to break the news to me that there was progression in the lungs too. Again not too surprised but nonetheless very bummed. As I mentioned before, I am out of “big guns” chemo options and I have one chemo left, a new agent that was recently FDA approved. However, I have not been impressed with the results I have seen so far with this new chemo. Some people seem to do well on it but from what I am observing, many people have a short period of stability before the cancer starts progressing again. If we had not seen progression in the lungs, I would have been comfortable trying the chemo pills but when I found out that there was progression outside of the liver, I knew I needed to do something more aggressive. I have been looking at trials for a while, following other fighters’ response to different trials, researching my options, and sending my findings to my Shands doctor for his input. So far, everything I have discussed with him was not the right fit for me. I have been quite excited about a certain trial and he seemed to think that it would be a good option for me but they closed the Phase 1 part of this trial a couple of weeks ago. A Phase 2 trial should be starting soon – but how soon? the time is ticking and I need to do something now. I think it is wise to get into a trial while we are still “healthy” enough. Believe it or not, there are many exclusion criteria to enter a clinical trial and basically you need to be healthy enough. My Shands oncologist suggested a trial called “NHS-IL12 for solid tumors”. This is an immunotherapy trial at the National Cancer Institute (NCI) in Bethesda, MD. I know my oncologist has been keeping his eyes open for me. Although I didn’t have the chance to talk to him about the study, I know that he must have had a good rationale for it. I trust his judgement 1000%! This study is to evaluate the NHS-IL12 agent’s capacity to help the immune system become more active and kill cancer cells that have not responded to standard treatments. A key factor in choosing this trial is that it will not preclude me from other immunotherapy trials if I don’t respond to this agent. In one of his messages, my oncologist mentioned that early results have been promising. They have seen shrinkage of tumors (not just stability) but their sample was small. I actually like the idea of having a foot into the NCI system. There are many trials underway and in the works so if I don’t respond to this one, I believe that they will be able to help me find another trial and already being in the system may help speed things up.

There are obviously pros and cons of being in a trial. In a Phase 1 study (which I am about to enter), researchers are interested in the safety/toxicity of the drug. The goals of a phase 1 study are to find the highest dose of the drug that can be given safely without serious side effects, to understand the effects of the drug on the human body and to find the best/safest administration techniques. In a Phase 1 study, the researchers are not so much interested in the efficacy as they are in the safety of the drug. In my mind, when you are enrolled in a Phase 1 you truly are a lab rat… On the other hand, while enrolling in a Phase 1 trial, you will receive the specific drug, there is no control group receiving a placebo or the “standard of care chemo”. I know I will be monitored like a hawk and that in itself is reassuring. I have had so many issues with our medical insurance that I am feeling relieved to know that my next treatment and scans will be covered by the trial – no need to fight with the bozo doctors at eviCore, the company that Cigna hires to determine if the procedures are “medically necessary”. I am not trying to fool myself, I know more people fail trials than people who achieve remission but again, there are miracle cases and many cases where people at least benefit from a time of stability on drugs that are typically not as as harsh as the regular chemos… So the plan is to fly up to DC next week where I will get blood work, scans, and will meet with the principal investigator. If everything checks out, I will most likely return the next week for the first dose.

A whole new world to navigate ahead of me…

I just want to catch a break…

Sheesh, so much has happened since my last post. I have kept my Facebook updated but I know that not everyone who reads my blog is on FB so here are the most recent news with some news that have not made it to my FB wall yet…

In my last update I mentioned how I was going to have the 4 spots on my liver ablated. Well that procedure never happened. I was all prepped and ready to go but right before the procedure, CT pictures were taken and I was pretty shocked to hear that there was disease progression from my previous MRI and I now had about 10 spots… I was thrilled that my doc had a plan B and instead he performed an angiogram of my liver to look at the status of all the blood vessels and he did a mock trial for the Y90 procedure, the radiation beads. Everything checked out fine and we decided to move forward with another round of the magic beads. I was a bit nervous I must admit. The first time around came with so many complications but I always said that despite the complications I would have this procedure again because in the end it really reduced the tumor burden on my liver. The good news this time around is that we could treat both sides of the liver at once. I have complete trust in my doctor and was more than willing to try, especially after being told I would *never* be able to get this procedure done again given the damage to my hepatic artery. My interventional radiologist skillfully used the pancreaticoduodenal artery (try to pronounce that haha!) and let the radiation beads loose. The procedure went really well and I was happy to wake up not throwing up and not needing to be hospitalized! That was my deal with my doctor, I would go through the procedure if he promised “no NG tube” afterward, he did promise and held his promise! I had a pretty miserable weekend, feeling completely depleted of energy with low grade fevers on and off but again, it’s always nice when we can put things into perspective and I knew that the fatigue would pass and still thought that it was much better than last time. My doctor called yesterday with “so-so” news… turns out that 2 spots on the left side of the liver were not reached by the beads. He explained that it was a result of using the artery he had to use given that the main one is completely closed… He said he had seen another blood vessel he could use to go after those 2 spots and he still believes the beads would be more effective than just ablating them… so the plan is to check my cancer marker and re-scan in 2 weeks and decide from there what to do. Whatever is decided is fine, I’ll do whatever it takes and at this time I have no chemo option that I believe will really kill the cancer. My last chemo option will at best keep me “stable” and again we want stable until the right clinical trial opens up. This lead me to do more research on clinical trials. There is one that is super promising and my GI oncologist agreed so after contacting them today, I found out that the study is no longer recruiting. Chances are it will go into a Phase 2 trial but we have no clue when… My oncologist gave me another one to research. I contacted the principal investigator and heard back within the hour which is always a treat. He is suggesting that I send my stuff over for them to review and then possibly make an in-person appointment. This study would be in Maryland so it would require some traveling – I have to look at the protocol more in depth to see if it would be feasible… So that’s what has been going on, I guess I will have a better idea in 2 weeks where I am going with all this… In the mean time I will continue to rest and let my body recover and refuel for the next chapter… Thank you for all the love and support – sending my love to everyone.

Ugh! Time to switch things up… again…

Well it’s been a pretty good 5 months being on “maintenance chemo”. Since last December, I have been on a milder chemo regimen which I did on a 3 weeks “on” and 1 week “off” schedule. The side effects have been pretty manageable and we had the most amazing Spring break in Tahoe. We skied 5 days straight and had a wonderful time with our friends and new friends we met along the way. I am still so grateful for my friend Tish for so generously inviting us to her condo. This was such a needed family vacation but we couldn’t have afforded it without her. So there Tish, thank you so much! We are all so grateful for this incredible vacation we had!

I was back in the “chair” the day after we returned. My next step was to get a follow-up MRI to see the results of the ablation I had done a few weeks earlier. I once again had to fight my insurance company to get the scan approved (which is really taking a toll on me – but that’s a topic for another post!). Right before we left, my marker had gone up by 0.2 – I was able to put it out of my conscience for the duration of the trip, hoping that it was just “lab error” but knowing in the back of my mind that so far, this marker has always been spot on. I asked my oncologist if we could re-check it before my MRI follow-up with my IR so we could get an idea of where things were at. Well of course I wanted to know but I wish I had not seen it… It did continue to increase and it is now at the highest it has been since last August. I went to see my IR with this information in hand and not expecting to hear good news. So the scoop is that there are 4 spots on my liver that are re-activating. These are spots that were there before so they are not “new” lesions. They were just inactive at the time of my last PET scan. I was clearly told that maintenance chemo would stop working at some point but I was (and am) still unconditionally optimistic that maybe things could all die permanently and that I would/could be free. I really didn’t want to be in the situation that I am now, my options are really dwindling down. I have exhausted the 2 “big guns” chemo so there isn’t much left and the immunotherapy magic bullet is still not here.

I made a list of potential treatment options and sent it over to my GI oncologist at Shands. He is usually really good at responding promptly but it took a few days to hear back from him. I think he really took the time to review my scan with a radiologist and look at the different options. So here’s what we agreed on: 1) I will get the 4 spots on liver ablated with a microwave ablation. I guess one of the spots might be hard to get to, it is up high on the left lobe and apparently close to the diaphragm and if the latter gets burned it could cause a lot of pain. I have so much trust in my IR that I am very confident that he will be able to work his magic. 2) I will then move on to a newly approved chemo for those with colorectal cancer who have stopped responding to the standard chemos. This one is called Lonsurf and comes in a pill form so no more infusions. It obviously comes with its own set of side effects and the most troubling at this point is the hair loss. I know this probably sound really shallow and vain but I am so NOT ready to lose my hair a frickn 3rd time… I’ll have to find peace with this one but for now it is really hard to accept, hence the constant tears.   The goal of this plan is to “tread water” and hopefully keep things in check (stable) until the right trial opens up. There is one coming down the pipe, I emailed the pharm company hoping to have an idea of when their trial would start but they just sent me a generic response. My GI oncologist said he would try to find out more information. We are all waiting for the ASCO meeting in June where information about the new immunotherapy trials should be coming out and may help us figure which trial might be best for me.

So today I am kissing 5FU goodbye… I have been on this chemo for almost 2.5 years and it has kept me here this long… hoping that its little sister Lonsurf does the same thing because I want to keep surfing (and skiing!) for a long time…