Remember in September when my neck started hurting and I had the MRI scans of my cervical and thoracic spines and there was a metastatic lesion in my C5 verterbral body but I said that was too high to account for my pain and so I was attributing it to the degenerative disc disease and disc herniations seen at the C5-6 and C6-7 levels? Well, I was wrong. (Make sure you cut and paste that into some permanent file for posterity, Sweetie Pie, I know you don't hear it nearly enough from me.) It's been getting worse and worse. I've been treating with Ibuprofen, heat, ice, exercises and trips to my friendly onsite physical therapist and it really seemed to localize in one really sore spot on my right shoulder blade, a "trigger point" for those in the industry. A week ago I experienced a return of the right sided midback pain that was what led to the diagnosis of my cancer in the first place. Tuesday morning I went for my first acupuncture session and Tuesday afternoon I saw my oncologist. By this time the neck pain was such a problem that I needed help changing positions and haven't had a decent night's sleep in weeks. He suggested we go ahead and scan again, I said no, that I'd stick with our plans to stay on Tarceva, scan the 16th and reevaluate then. But by the time I went to bed Tuesday night that "trigger point" was pretty much gone (I've always been a believer in acupuncture in the abstract - now it's concrete.) But that let the central neck pain declare itself in full force and by the time the alarm went off Wednesday morning I had decided to proceed with scans ASAP and look into radiation therapy for pain control if that C5 lesion was growing.
My hospital was amazingly accommodating - they added me onto the schedule yesterday morning and called all over the place to get my lab results from the day before so they could give me the contrast dye. After they deaccessed my port and I got dressed the reading radiologist invited me into his office to go over the scans. The C5 lesion is definitely larger and has broken through all kinds of cortical plates since September, there is a new C4 lesion, the T11 lesion is larger (accounting for the recurrent midback pain), the liver lesion is slightly larger and the adrenal lesion is definitely larger. Pretty definitive evidence that the Tarceva is not working, which is not so great, since that's one of the few things I was pinning hopes for odds beating on after I didn't get a complete response on Carbo/Taxol/Avastin.
Even more impressive than the whole faster than fast getting the scan done and read, I was in the radiation oncologist's office at 2:00 pm yesterday and had my first treatment to the cervical and thoracic spine lesions at 4:20. I had to negotiate a bit to run back over and take care of my afternoon patients after they did the simulation and were setting the machine up to treat me but I, of course, won out. There will be 10 treatments on consecutive business days. I'm back on steroids to prevent problems from swelling in response to the radiation. They said upwards of 70% of patients get very significant if not total pain releif from the radiation therapy and it usually occurs at about two weeks. Meanwhile I'm all about Ibuprofen during the day and oxycodone at night.
So:
Overwhelmed by the neck pain. I've been fighting with this since September and it beat me yesterday. Now that I am no longer in denial about its source and on treatment that is likely to give me significant relief I can hold the overwhelms at bay and deal with it for a couple more weeks.
Disappointed that the Tarceva gave me no benefit.
But definitely not dead yet. My oncologist will be mulling next steps and we'll move on to the next chemotherapy regimen after the radiation treatments are done. I had to cancel my two day CME trip to Boston today and tomorrow but that means I have the next five days without clinical responsibilities where I can pretty much do whatever my body feels like doing. I should get enough relief from the radiation therapy to be able to enjoy the NM trip to the fullest (including egg nog and margaritas if I time the whole chemo thing properly). I still have a low tumor burden, still have an excellent performance status, and don't feel like I'm on borrowed time yet.
That's what's up with the doc this week. You can all look forward to the radiation therapy monologues as I experience yet another piece of the cancer patient pie firsthand.
Lots of love,
Lisa
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