Well, a lot to talk about today. This may get long, so I apologize in advance.
As we were leaving for the Oncologist around noon, the surgeon's office called and said she wanted to cancel our appointment tomorrow and schedule the test for Tuesday morning and then meet with her that afternoon. This means a full day in Portland, but at least we should get some answers while we are there. Barbara's drain is still showing 2-3 cc of liquid every 24 hours, but not sure if that is really leakage (my opinion) or just other bodily fluid seepage. We should find out on Tuesday. Hope for the best.
Of course, with us being in Portland all day on Tuesday, this raised the question of her sisters visiting on Tuesday and Wednesday, but it turns out they are going to come a little earlier so we will have some time on Monday as well as Tuesday (in Portland) and Wednesday. I hope they know how much that means to us and especially Barbara. This waiting period is starting to get to her and having more family around even for a couple days will help a lot.
Now for the visit with the Oncologists. A lot to say, so I hope it all makes sense. First, he mirrored the report on the surgery and pathology that it went extremely well and the results essentially showed that the surgery got ALL of the cancer that was detectable with good margins. This was confirmation of the earlier pathology report, but it was great to hear the same thing from another doctor, especially an Oncologist. Of course, this is not absolute proof that there are no more wandering cancer cells that could take root and grow if not killed off, but it says the chances of any cancer left is about as low as possible given her situation.
For going forward, he indicated there are essentially three possible options. One is to do no more Chemo and simply go into a monitor mode where she is checked every 3 months or so. We did not get into any detail about what the monitoring would involved, but would find out when needed. The other two options involve additional Chemo, mainly just a matter of which Chemo to do. There are really more than two specific options, but two main ones with minor tweaks to them. Because of her reactions to the 5FU drug, the "standard" regiments are not really an option although there are at least two others that should be about as effective. They are also strong Chemo drugs, but there is a good chance she would tolerate either of them better than the last ones. After Chemo, she would go into the same monitor mode.
A couple of key points on how it will be best to proceed. First, he does not think she should have any Chemo until the leak is resolved and corrected as any Chemo will impact normal healing especially if another surgery is needed or any other procedure is required.
The second key point is that for this after surgery Chemo to be most effective, the earlier the better. In other words, the longer we have to wait to start, the less reason to do it at all. An comparison he gave for this was if you had a weed pop up and immediately hit it with Roundup, it would probably not come back. If you waited and the weed established a more extensive root system, you might not kill it all with the Roundup.
In his opinion, giver the great results of the initial Chemo along with the surgery and results from that, doing the follow up Chemo may really only be increasing her survival chances by 3-5%. I take this to mean that there is a very good chance the cancer is gone already, so there is a high probability of long term survival no matter what is done, but in the unlikely chance there is a any cancer left in her system, the additional Chemo will improve her chances of further cancer down the road. And in his opinion, if you have come this far, keep going to do everything we can to make sure it is gone. We, of course, agree with this philosophy. Bottom line is that what we do going forward will be driven a lot by what happens with the leakage and everything around that. So the waiting will continue until at least next Tuesday.
Now for the minor bad news, the Oncologist we are working with is leaving in 5 weeks which means her treatment will get handed off to someone else at that point. If she starts before that, he would set her up and get started with his plan and then hand her off. We really like him and he has been great to talk to and seems to really want the best for her. There is a good chance the new doctor would be the same, but it would still be nice to be able to continue with the same doctor we know and knows her case in detail. Turns out he is changing practice in Augusta where his main office is now and I asked about us going with him, but he is going to a Veterans hospital, so that leaves us out. We Plan to talk to the surgeon next Tuesday about this since she originally recommended him and I think she knows one of the other doctors that works in Farmington once a week, so maybe we just switch to the other doctor she recommended. We will have to wait and see.
One other point. The Oncologist tested her for a gene mutation that occurs in about 10% of people. This mutation prevents the person from being able to metabolize one of the Chemo drugs she was being given which means it stays in the body a lot longer than it should and can cause very severe side effects. He thought she might have it because of the severe reaction she had. Turns out she does NOT have this mutation and her reaction was just worse than normal. This info is mainly for any blood relatives of Barbara.
I think that about covers everything. One comment to pass along. All of the Oncology nurses and the doctor said she really looked very great considering what she had been through. That was good to hear since we really don't have any reference for how she should be doing given what she has been through. Barbara has really been trying to do everything they tell her and it seems to be paying off. If the leak/drainage issue would just go away, then we could really get on with things.
I hope I did not forget anything, but if I remember something else, I will do an additional post. There probably won't be much to say until after the appointments on Tuesday, but if I have any news (such as drainage seems to have stopped- that would be fantastic), I will pass it along.
Wayne
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