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Aug 6, 2018 Latest post:
Dec 9, 2018
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Since last week Allie has had a lymph node biopsy (which she refers to as "the shanking"). It showed one infected node and three clear ones. This one will be removed when she has surgery in the fall after chemo, so there was no change needed to her treatment regime. She finished up fertility treatments with egg harvesting on Sunday and is feeling well after that, with nothing more than some throat irritation. Her chemo will start this week on the 9th and go every other week for 16 weeks (8 treatments).
you will notice that pippin and comet are prominently featured in our picture slot. dog photos are always transmitters of smiles so feel free to send some if you have them.
So day one is on the books. It was a long day (enhanced in that respect by Boston traffic, which allowed us to make the roughly 15 mile round trip (about 7 miles each way) to Dana Farber Cancer Center in a snail like 2.5 hours. In many respects it was better than expected simply because it was far from the worst things that we could imagine in fearful times while waiting for it to start. From her parents point of view, Allie was stoic and determined -- to quote my sister, "Duh." If her point of view is different she has not said. She seems to have come through day feeling fairly well, exhausted as we all were but no unmanageable side effects yet. She had very little discomfort during the process, though it was long; after accounting for blood work and other prep and waiting time the actual treatment was nearly 4 hours. Most of that time was hydration and electrolytes, with only about 45 minutes of actual medicine. Once or twice she felt some minor pain and burning but the infusion nurse, Steven, who was a truly outstanding professional and great patient advocate was right there with warm packs that solved the problem very quickly. She kept her sense of humor during the process and got off a great one liner. As her husband and the nurse pointed out to her that the chair she was in for the treatment could be arranged in many different positions for her comfort , one of them said, "You can lean back if you want to." To which, with appropriate deadpan, she responded, "If I am so inclined.". I noted that she had the same sense of humor as her paternal grandfather.
We also got to meet her oncologist, who is quite impressive. Very knowledgeable and definite in her thinking but with a wonderful humanity and bedside manner and an absence of arrogance and clinical detachment that sometimes can make top people in that field seem stiff and robotic.. In this respect Allie is in very good hands. Her treatment regime is once again changed from what we had thought even at the beginning of this week and will likely be a bit longer than expected. She was accepted into a clinical trial for a drug called sysplatin, which has been proven effective for some time for breast cancer generally but only recently has shown promise specifically for the genetic type that Allie has. This drug is administered once every three weeks (instead of two) so that will add at least 4 weeks to the time but no extra treatments -- it is still four treatments just spread over 12 weeks. we don't know yet if this will eliminate one of the other two drugs or be in addition to them. It depends on how she reacts. So she may have 12 treatments in total over 27 weeks or she may have 8 treatments over 19 weeks. we wont know for sure until later in the fall. Her overall prognosis has not changed -- it is still very good and her oncologist was very positive, although in that profession they are always careful to say there are no guarantees.
We will see today if side effects start to develop but there is a very good plan in place to deal with it if they do. She already has anti -nausea medications and detailed instructions on what to do. With luck and grace she will feel well. One down, 11 to go!
2 down and 10 left. Since the last infusion Allie now has a better sense of how to expect to feel. She has also been able to talk to the Doctors about changing the anti nausea regime slightly to come off the steroid medication more slowly so that her first 3 or 4 days are better. The remainder of her last few weeks were not too bad, with her energy level picking up a good bit in the last 10 days. So far her immune system is doing well with no need for any immune support drugs and no white blood cell count issues. There has also been significant shrinkage in the tumor after just the first infusion and this is certainly encouraging news. The tumor is now small enough that it can't be measured in a manual examination.