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…


5 thoughts on “Here it is…

  1. Thank you again for sharing the status of your journey with honesty and openness. I am glad that you taking the needed breather to move forward again when you feel stronger and better. So glad that you and your Dr. always have that Plan B! Love to you and family Rachel!

  2. So sorry for all that you have been though with this trial. Take that break, enjoy your family, and keep that sense of humor. You’re amazing! I am keeping you and your family in my prayers. Lots of love!

  3. Rachel – I’m so sorry that the results of the trial were not as you hoped. Sounds like the right time to recharge your mind, body and spirit with family and friends. We will continue to pray and stream positive energy to you. Love to you, Fred and the boyz!

  4. My wife was diagnosed with stage four colon cancer the doctors said he got all the cancer out after removing about twelve inches of her colon. Thinking she was cancer free we went home very happy.It took the doctors months to figure out I didn’t have gastritis, but stage 4 small colon cancer. she started having terrible pain in her abdomen, and vomiting but no blood in either. I had a general surgeon do surgery and it was supposed to be laparoscopic but ended up being exploratory. They had to remove a foot and a half of her small colon (doing a resection), her appendix, one ovary, and part of the large colon. was on Folfox for 3 months and then Folfirinox for 4 months to try and get ready for surgery and the HIPEC (hyperthermic intraperitoneal chemotherapy) procedure. I was just told I am not a good candidate for this surgery because the surgeon did not see enough response with the chemotherapy. Now my oncologist is putting me on Erbitux and a cancer cell blocker. I am nervous because of possible side effects,after a member of my church introdure me to a doctor,which i contacted as fast a possiblevia his gmail,he gave her some medications which she took as prescribed by the doctor,last two month she was diagnosed colon cancer free,its will be nice if you also contact him via his gmail,am very sure he can be of help really happy sharing my story with you

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