We had our first check-up visit with Dr. S. yesterday morning. He examined Lori’s tumor and found that it is definitely smaller than it was three weeks ago! Also, the lymph nodes felt normal, and Lori felt no pain when he examined her there. Three weeks ago, the lymph nodes were sore and there were solid lumps. This week, the lymph node lumps are either gone or much much smaller, and it isn’t sore. So, Dr. S. seemed very happy about her progress under Taxol, and we are relieved to hear such good news! I had begun to think the tumor had actually grown since her first appointment last month. I certainly didn’t expect to hear a good progress report this early.
Since the Taxol is working well, he isn’t going to add any additional chemo types to her treatment plan, and we’re happy about that. Lori’s Taxol side effects have been very minimal so far, but it is still very early. She experiences some soreness/pain particularly in her lower back, but we’re pretty sure the pain is just the bone lesions from the cancer. Her hair is thinning at a rapid rate! It may all fall out, but it may simply continue thinning and then stop; we’re not sure yet. Other than the soreness and hair loss, she hasn’t experienced any of the other possible side effects from the chemo. Praise God!
Following the office visit with Dr. S, we walked down the hall to the infusion rooms, and Lori received her first treatment in the second round of chemo. They tapped into her new port in her chest instead of using the IV, so it went smoother, and Lori loves the port. She slept through most of the infusion due to the Benadryl which is normal. Today, she’s doing very well. Steroid Tuesdays are the best!
I just returned this weekend from having spent 11 days at our home in NC. I held a work day two Saturdays ago at the house, and many neighbors, friends, co-workers, and even a few folks I’ve never met showed up to help me get the house fixed and ready to possibly sell. I’m very grateful for everyone’s help. We accomplished around 80% of the projects that Lori and I had planned for the next six months!! That was just a huge blessing. I stayed busy the rest of the week finishing little projects, flying a bit, having meetings with doctors and hospital people who are involved in patient travel, and working out insurance for Lori’s continued care. The plan is for me to continue to split my time between work in NC and care-taking here in IN. It should shake out to be approx. 10 days each month when I’ll be in NC for my AF job. I’ll be here in IN for the other 20 days on non-medical attendant status. Basically, Womack hospital approved a temporary duty status for me to travel and attend to Lori here in IN while she receives chemo. Without the non-medical attendant status, we couldn’t sustain this system of living here in IN unless I put in for a humanitarian re-assignment locally.
The next major medical decision we are considering is the possibility of a second opinion through one of the major cancer research facilities. We have considered Mayo Clinic, Johns Hopkins, MD Anderson (MDA) in Houston, and others. Recently, my uncle sent a newspaper clipping from Houston which detailed one of the main research breakthroughs from MDA. Here’s the story: http://www.sfgate.com/health/article/Jim-Allison-confronts-cancer-critics-with-5405290.php . The article is long, so if you don’t want to read it, the bottom line is that a Dr. at MDA came up with a drug called ipilimumab (Ippy for short) which helps the immune system fight melanoma. It is effective in many patients but is ineffective for some. It’s a very exciting breakthrough, and there is potential for it to have applications for breast and lung cancers. In a previous post, I talked about the two main ways researchers are trying to cure cancer: through medicine which fights the cancer directly or by teaching the immune system to recognize and defeat the cancer cells. Ippy relates to the latter; it boosts the immune system to fight off melanoma, and in many cases it seems to have cured people of their cancer! It’s called immunotherapy. Dude was submitted for the Nobel Peace Prize for this discovery! Needless to say, this caught our attention, and I’ve been seeking a phone consult with an MDA oncologist to discuss Lori’s case.
We also asked Dr. S about Ippy and its possibilities. Dr. S. acknowledged the potential, but he also warned about the severe side effects that Ippy produces. He also reiterated that stopping chemo to begin an experimental drug like Ippy for Triple Negative Breast Cancer (TNBC) would be very risky particularly as the Taxol is doing so well for Lori with minimal side effects. He also assured us that he will always be on the lookout for clinical trials and will suggest one if he (or we) think it’s time. The key is recognizing when that time has arrived. His opinion is that we should stick to chemo as long as it’s working and the side effects are acceptable to Lori. Once either the side effects become unbearable or the chemo stops being effective on the tumor, we will begin looking strongly at clinical trial options. Of course, the third possibility is that a drug like Ippy is proven to work on TNBC in which case we’d hop on that right away! Anyhow, that is our oncologist’s opinion, and I do trust him very much. I also believe he has checked his ego at the door, and he does have Lori’s best interest in mind at all times. However, we do still want the second opinion, both for peace of mind and for the possibility that we’re missing something.
This morning, I received a call from my SOCOM Care Coalition sponsor who was checking up on things for Lori. I told him about my desire to seek a second opinion and about the possibility of a drug like Ippy working for Lori. When I mentioned MDA, he got excited because the SOCOM Care Coalition has supported soldiers previously who ended up at MDA for care. The coalition works with a LtCol military liaison to MDA and my sponsor is going to get us together for a phone consult. That’s exactly the kind of connection I was looking for, and I can’t wait to talk to her! I expect to hear from her soon. I doubt we’ll be packing up and heading to Houston any time soon, but I’m glad to have this option gaining some traction.
That’s it for now. More to come soon