I have truly felt that I have needed to write, that it has been my own personal answer to prayer. But, I haven't been as faithful in that effort for several weeks. I have plenty of excuses. Sometimes I just marvel that I can rationalize anything! And there have been days when I don't know if it's even an excuse...but the effect is the same...regardless. The point of this paragraph is to acknowledge that I'm way behind in blogging any of many, many, too many (but I'm not complaining :) blessings. I may not get to all of them even now...that really is the problem of not keeping up!
I mentioned yesterday that we had travelled to Vanderbilt to see Dr. Keedy. This was my second visit with her and it was a much better, less frustrating visit than before. The visit with her the first time was great...but the admitting process was VERY cumbersome, long, and confusing. Yesterday it was smooth and seamless. Awesome!
I learned that she would have recommended the change in chemo therapies, just as Dr. Thompson did. However, the fact that I have started gem/tax makes it impossible for me to qualify for a new clinical trial of gem/tax with the newly approved Olaratumab. Had I called/contacted her when the scans showed that I had continued growth on the doxorubicin, I could have been put on votrient until potentially approved for the clinical trial. However, she said she'd probably still would have recommended just heading straight to the gem/tax. There would have not been guaranteed admittance to the trial. There would only be a 50/50 chance even in the trial that I would have been on the Olaratumab arm and if the trial actually shows it works synergistically with gem/tax like is seems to with doxorubicin then they can add it if it's fast tracked by the fda like it has been with doxorubicin. All of this possibility is probably 18-24 months away at best. But one never knows. The good thing with gem/tax is that there is no lifetime limit like the doxorubicin. She's had a patient on and off it for nearly five years and I know of others from my sarcoma support groups who've actually been on it longer. When my scans showed the doxorubicin wasn't working, Dr. Keedy was at an international sarcoma conference in Portugal...whether I could have even made contact with her...who knows. And I am still learning to navigate my way through the working relationships with a regular local oncologist (Dr. Thompson) and her. I think that was what I liked so much yesterday, I felt like all of the uncertainty was wiped away. For instance, there is much discussion on the sarcoma support boards about needing to see sarcoma surgeons when facing surgical options. When I had the ER episode 8-9 weeks ago, part of what made me so concerned was who to go to...local onc, her, local hospital ER or drive to Vanderbilt. But she was able to clarify that sarcoma surgeons are really important if the purpose of the surgery is to take out a mass entirely with clear wide margins that they specialize in. However, I'm NOT in that position, and probably never will be due to the quantity and size of the masses, and their locations. I will more likely face debulking and/or interventional procedures as/if organs become involved, i.e. Colon, stomach, jejunum, arteries, liver, lungs, kidneys, gall bladder, pancreas, etc. In those cases, a really good surgeon who specializes in the trouble I'm facing at the time, can manage and care for me where I am the best, instead of me trying or needing to get to Vanderbilt and a sarcoma specialist. If I were in the Nashville area, it would be a no-brainier to go there...but three hours away...when I have local hospitals that are great...wisdom dictates my care here. And it really relieved my anxiety.
One of the great things she said they discussed at the conference in Portugal was how hopeful many of the Sarcs are with yondelis. It's not so much about the shrinkage...that seems to be a very small percentage with any of the chemos. But, there seems to be encouraging results at gaining greater stability for longer periods of time before the tumors adapt on yondelis. There are a number of members on the LMS support boards who are currently on it, but it doesn't seem like a cakewalk either. Anyone on Medicare is denied coverage currently because it is a 24 hour infusion and the protocol is to go to a infusion center and get "hooked" up and then return home for the 24 hours, then return to be "unhooked". For some reason, Medicare will not cover that, unless they are hospitalized. And now, with the upheaval in obamacare, many on the boards are anxious...fears of pre-existing conditions, Medicare, government options, and just uncertainty abound. I am sympathetic. My costs are out of sight...just the scans and blood work, let alone meds, chemos, and dr. visits...and so far my insurance has been really supportive. Changes really are necessary if health costs aren't contained and laws aren't changed. Hopefully these issues will end up being resolved for anyone facing serious medical challenges...regardless of type. The last thing anyone with serious health issues needs to face are the added stresses of financial/insurance costs. I don't have an answer. But my heart breaks for so many. And, I don't really believe it's the government's role either. Just need the millennium to come soon!🤗
So, Monday was day 8 of my first round of Gem/Tax. A round is 21 days. On day one you get the gemcitebene with the usual steroid, and anti-nausea meds. The next week you get more gemcitebene, more steroids, more anti-nausea meds, Tylenol, and taxotere. Dr. Keedy would recommend the addition of neulasta. The first day and week I felt tired and some breakthrough nausea. But nothing too bad. Monday was another story. The infusion went well and Rich brought me home and tucked me into bed and said, "stay there!" The infusion nurse had told us it was a good day to just rest. I slept most of the day and wakened in the late afternoon, in time to attend dinner with a group of friends for our monthly home evening group. I was freezing...teeth chattering, bone chilling, hand shaking freezing and no matter how many coats I had on I couldn't control the shakes. I lasted about an hour and a half before I had to come home. I felt so bad. Usually we spend several (3-4) hours together and Rich really was enjoying himself, but I just couldn't manage any longer...and because we left, so did everyone else. I immediately climbed into bed, doing a sort of "princess and the pea" reversal - four or five blanket and I was still shaking. Rich jacked up the heat to no avail. After about an hour, it occurred to me that I might have a temp. I've been warned with every cycle of any kind of chemo that if I develop a temp of 100.5 I need to call the dr. or after hours doc immediately. I took my temp and it was 103.3...well above the call number. After several rechecks Rich called the after hours number and was put on hold for nearly an hour. Neither he nor I wanted to head to the ER as if it was my blood counts and immune system crashing, being exposed to any kind of illness didn't seem like a good idea. Finally, we got through and the woman that answered said she'd call the on-call onc and to wait for his call. We waited until 3 am. Finally I drifted off to sleep and sometime by morning my fever broke and I felt human. Rich was furious and I don't really blame him. However, I'm more a pacifist I guess. I did talk to Dr. Keedy and she believed it was a reaction to the taxotere...although it could have been the second infusion to the gemcitebene. Or, my blood numbers were affected...and that will continue as that is the natural course of this chemo...that's why she would recommend neulasta. Seriously, we were well aware that flu like symptoms were possible for up to five days after infusion...guess I just didn't think it could happen to me! Seriously! Do I really think I'm immune? 😜. Obviously!!!
Anyway - I'll contact Dr. Thompson's office this morning about the neulasta...if they don't administer it this morning it'll likely have to wait until the next cycle. What we don't know, and neither does she, is whether or not Tricare covers it for this protocol, unless medically necessary. That may be the reason. We'll see. But, as is typical, this is the week my counts should dive and the next week my immune system should start to rebuild. Rich is REALLY protective. I had thought after our appointment we'd head to the temple and catch a session. But after Monday night he nixed that with no debate. He feels strongly that I need to stay away from potential threat at this time...so I'll comply. Next week, once my immune system has had a chance to jump start, I need to get the flu shot. No guarantees with it...but I need to do what I can to help myself!
And, I would add more info from the last few weeks, but, my iPad is dying. So...I'll close for now with my heart-felt gratitude for all the good wishes and prayers of so many of my friends and family. And for the knowledge I have that my Heavenly Father hears and answers prayers!
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