First, the basics. The nausea is a little better today, but still bad. The medicines seem to be helping a little more this time and lower dosage of Chemo drugs may also be making it a little bit milder although over the weekend it seemed to be about as bad as last time. The sores in her mouth are starting to get worse and will likely do so for a couple days before they start getting better. She is able to eat so far, but because of the nausea, she is not eating very much. We are using the feeding tube to get some food and at least liquids in, but the liquid that we are feeding her does cause the nausea to get worse. Hopefully this will get a little better each day since it is at least starting to improve a little each day. She is feeling fatigued which is expected, but that should get better each day as she gets further past the end of the Chemo drugs being in her system.
Now for the big news. After how bad the nausea got immediately after the Chemo treatment last Thursday and that it continued with no improvement over the weekend, Barbara was getting to a breaking point. She has really been a trooper to go through as much as she has and sticking to it, but this was just getting too much. After seeing the PA on Tuesday, they were able to get us in to see her Oncologist today (he gave us his time during lunch). He immediately agreed that, given the results of the surgery and pathology report on what they took out in the surgery and given her reactions to the Chemo drugs, stopping Chemo now was the right thing to do. He admitted that he had been reluctant to give her this last cycle given her earlier reactions, but was willing to go for it if we were. He really felt bad about how she was feeling.
He also mentioned that he had read a recent study which supported this decision. The study compared two groups of people. Both groups had similar results from the pre-surgery Chemo and the resection surgery in that no active cancer was detected in the material removed during surgery and there was no indication that it had spread anywhere else. One group had three cycles of post surgery Chemo (like what Barbara just did one cycle of) and the second group had NO Chemo after surgery. The results showed no difference in the two groups as far as the cancer returning. He was not sure of all the details (such as he was not sure if the study was specifically stomach or Esophagus chance but they both use the same drugs and approaches) and was trying to find the study to give us a copy, but had not been able to find it yet (if anyone out there has access to that kind of data and can find that study, please send us a copy). He agreed that doing the one cycle we are now completing will potentially provide some slight benefit, but the probability it is doing anything is really fairly low. In other words, there was probably no cancer cells wondering around, but just in case there were, this one cycle has a good chance of destroying them. Any additional cycles would be even less likely to find anything to attack except healthy, good cells. I think the bottom line is that although you can never reach 100% that a cancer is cured and gone for good, we have done as much as is reasonable to get as close to that "cure" as we can given everything.
Barbara was worried that people would think she was giving up if she did not go through the next two cycles. As I talked about in the blog a few days ago, we have been trying to tell her that was not true, but if you know her very well, she hates to disappoint others and sometimes thinks too much about others. Having the doctor agree that this was the right thing for her and that she was only increasing the risk a very little bit if any at all, really helped her feel better. However, please let her know you stand by and support all that she has been through and understand our decision if it should come up.
At this point, unless the sores get too bad or the nausea does not get better, we do not go back to the doctor for 3 months except to get her port flushed once a month. The plan is to do a CT scan (assuming insurance will approve it) before she sees the doctor as well as blood tests to watch for any problems and to see how her recovery is going. This will be with our new Oncologist. The likely plan would be for follow up visits about every 3 months for 2 years and then less often after that as long as nothing is found. Of course, once she is eating enough, we still have to go back to the surgeon to remove the feeding tube. This is a simple office visit and nothing major.
Thanks again for all your support. I will continue to do updates at least every couple days until the nausea is gone and the mouth sores have healed so everyone knows how she is doing.
Wayne
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