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!

12440282_1820835988143919_8812646217131975700_oI 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…

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6 thoughts on “Ugh! Time to switch things up… again…

  1. Rachel, I am sorry that you are faced with yet another period of upheaval in your treatment. Dig deep and you will find the strength you need to get through.

  2. Hang in there petite cousine Im praying for you Sweden is closer to the clouds so maybe he will here . Hugs and va-z ma petite.

  3. I am sorry to hear of this Ugh! Praying and thinking about you and your family. Glad to hear how you and your team continue to stay on top of everything! Thank you for the update. So happy you had a much needed, well deserved, and fun vacation! Love, Cindy

  4. Rachel, I am sorry to hear your news, but I am staying unconditionally optimistic right along with you!!! I am glad you have a wonderful team on your side. Prayers are going up every day for you and your family. Love the picture! ((HUG))!! Love, Michelle

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