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.

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4 thoughts on “I just want to catch a break…

  1. xxx. i am one of the “non-face bookers” 😉
    always waiting for your blog. but i will go now to read on your wall. kisses, Annett

  2. Rachel,
    Yeah for the beads….sorry he didn’t get those last stubborn 2. The one trial must not be the one for you and this Maryland one sounds good. At least they called you back right away. Time is always important and I am glad they valued yours! I hope the scan in 2 weeks is promising and that we can get you out here to CA in early summer! Focus on the positive. Stay positive. Set daily goals for yourself and achieve them. If I can help in any way….flights…etc. let me know!
    And remember….we love you and we are sorry you are on this roller coaster.

    • So glad to have you on my cheerleading team Julie! I know I really hope we can make this little escapade happen! Writing is always therapeutic for me and after writing my post I am reconsidering jumping in a trial now – that would totally screw up the whole summer – maybe I should just go on that Lonsurf and start the process later in the summer so I can enjoy some quality time with family and friends… don’t worry I have you on speed dial – love you! xo

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