joteach
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Haven’t heard of it, but it sounds good! I’d love to know where the study was done, and which hospitals are using it.
Well, unfortunately I am home already. They could not do the resection. When they went in with the laproscope, they did see that the tumor had shrunk enough for the resection, but they also saw lots of little lesions all over my liver. Apparently they are too small to show up on the CAT scans. So, they didn’t proceed.
I am heartbroken, and can’t understand how this happened. I am meeting with the team on the 14th, after I heal up a little more. I think they said radiation is out of the question for now, because they can’t see the lesions on the scans. It looks like back to chemotherapy.
I asked my doctor for a referral to a shrink. I need someone to scream at. I just really thought this time it was all going to be good.I am always cold lately, too. The grocery store just about did me in today because I forgot me sweatshirt. I was told the chemo can do this. My temperature, which is usually around 97.9, was 96.9 when they took it on Thursday. The nurse wasn’t concerned and said it can happen. It’s driving my family crazy, thought, because I keep shutting the air conditioning off!
LeeAnn I will definitely call you to hear your story. Thanks so much!
Mark, I had the opposite experience in April. When I awoke and looked at the clock, I realized less than 2 hours had passed and knew they couldn’t do the surgery. I’m hoping the 2nd time is the charm! Thanks for the info. on the procedure. My pre-op isn’t until Thursday, but I pretty much knew it would be a huge incision. I’m fine with that…my bikini days were over in the 80s! The surgeon kept stressing that the recovery would be hard but that he wasn’t trying to scare me. I had to tell him that once you are told you aren’t going to live to see your kids grow up, nothing else can really scare you, now can it? I am so glad it worked out for you.
It is so hard to read about how often this cancer reoccurs. Is there anybody out there that remains cancer-free after a resection? I hope so. I know that this isn’t really the end, that I will have to keep having chemo for awhile after and frequent CAT scans, but I love to dream that someday it won’t have to be in the back of my mind all day, every day.
I do know that I am one of the lucky ones, so that is what I hold onto.!Joanna
Oh, and as far as the side effects from the 3 drugs, well the panitumamab causes a horrible, acne-like rash on my face and chest because the skin there has the same kind of protein as the tumor, I think. Something like that, anyway. I am on antibiotics and an antibiotic cream but still look like some of the 8th graders I teach. The Oxilaplatin causes an extreme sensitivity to cold…have to wear gloves just to take something out of the fridge and forget even going into the freezer. I hate it because I can’t drink anything cold and room-temperature water just doesn’t do it for me. Gemzar has made my hair thin…but other than that I haven’t had anything bad. Tired, but functional!
Thanks for the replies. I am sorry to see so many going through this, too. LeeAnn I am so sorry yours came back. But as you said, we will fight this for our little ones. You will be in my thoughts and prayers. Can I ask, how was the surgery and recovery? Did they make an L-shaped incision? The surgeon kept stressing it would be a large incision and the recovery would be taxing. But honestly, I am looking forward to it!!
When I first started my fight, a co-worker shared her story with me. 25 years ago she had breast cancer that spread to her liver and her prognosis was poor. She had young kids at the time and decided there was no way she was going anywhere. She believes strongly in the mind-body connections and feels she helped cure herself with positive thinking, visualization, meditation, and prayer. I have been working hard at each of those and I think it does help. I visualize my tumor shrinking every night, and visualize my white blood cells being made like popcorn! They have actually called me their “rock star of blood counts” because mine have never gone down. Who knows if it is from the visualization or not, but it couldn’t hurt and makes me feel better…at least makes me feel like I can control something! She also bought me some books and CDs by Bernie Siegel…former surgeon who is now a strong believer in the power of the mind to cure. I listen to the CDs while having chemo. I also switched to a high Omega-3 diet that another cancer patient had told me about. When I ran it by the nutritionist at Mass General she was in favor of most of it. I have given up dairy, red meat except for grass-fed beef (high in omega-3, low in omega-6), no sugar (well, okay, sometimes sugar…I can’t help it!) and lots of greens and fish. Again, who knows if it has helped but something did.
Marions, I think that is the same study I am in, but I wasn’t aware Rochester was a part of it. In order to qualify, my tumor had to have KRAS Wild-type protein, which about 60% do. It can’t have any mutations. There were a lot of other criteria…couldn’t have spread to any nodes or anywhere else, couldn’t have more than 2 tumors, etc. I just am so thankful I am a wild-type! Lol
Well, sorry my first two posts have been so long…it is just great to communicate with people who know what I am going through. My husband is great and tries to get it, but how can he?
I will be more brief in the future, I promise!
Joanna
