Cycle 2, Day 16

A lot to talk about today as several things changed as part of our meeting with the Oncologist.  This may get a little confusing (as we were a little confused at times today), but hopefully it will make sense at the end.  If not, please do not hesitate to ask questions that I probably will not be able to answer, but will try.  We spent a lot of time with him and he is clearly trying to work with her to find out the most effective treatment that she can tolerate without being completely miserable.

First, at little base line in simple terms.  Barbara has been on a Chemo treatment labeled as EOX.  The three letters each stand for a specific drug she is being given to fight the cancer.  This does not include other drugs she is taking to help her tolerate the treatment or just to feel better, but are the specific Chemo drugs.  She has been getting two of the drugs (E and O) through her IV port on the first day of the cycle only.  The X has been the pills she is supposed to take every day of the 21 day cycle.  Taking the pills (especially the full dosage) has been a problem because they were keeping her nausea going and making her feel miserable for the entire 21 days of a cycle.

Two major changes for the third cycle.  The new treatment is labeled ECF which is actually the baseline treatment and very close to equivalent to EOX (I will explain the differences and why the changes).  The E part is not changing at all.

Because of her continued nausea, the doctor is switching her from X to F.  X is ultimately the same drug in her system as F in that the X is taken as a pill which the body then turns into F (5FU is the more common term for this Chemo drug once in the system).  She will get this drug via her IV Port but infused with a pump that she will have to carry for 46 hours.  In other words, at the end of her day 1 IV treatment, her port will remain connected and be attached to a small pump which she will take home with her.  We return to the hospital 46 hours later (2 days) to have it removed and the port cleaned and flushed.  If the pills are at least a major part of the nausea, this will help a lot since it will only be put in for 2 days instead of the entire 21 days and not be going into her stomach.  She may be worse for a week or so, but after that, it should clear up quicker than it has been.  It will also mean she is getting the full dosage of the 5FU instead of a reduced amount because she is taking smaller amounts of the pills to help reduce the nausea.  This was always an option, but we went with the pills initially because they are more convenient.  In this case, there should be no change in the effectiveness (could actually be slightly more effective for reasons above) and simply a trade in worse up front, but over it quicker.

The second change is going from O to C.  C is actually a stronger and worse drug than the O with about the same effectiveness.  Because of the reaction Barbara had after the first treatment (light headedness and almost passed out when we got home, but very short lived) and then her stronger reaction the second time (went into ER because she was having trouble breathing and mouth was numb), the doctor thinks she is having an allergic reaction to the O drug.  He talked to a couple other doctors including a pharmacist while we were there and although they agreed he could give her something in the pretreatment drugs to try to head off the reaction, they all agreed it was probably not a good idea to give this drug again.  Many people have an allergic reaction to this drug, but it is usually after several dosages rather than during the first one or two and each treatment does tend to get worse, so stopping it makes good sense.  Since the C drug is just as good for effectiveness, using that instead makes sense as long as the side effects are not a lot worse.  Unfortunately, using it is the only way to see how it effects her.  This drug can be worse than the O, especially with nausea, but everyone is different, so no way to tell.  Worse case, he said she could end up in the hospital with vomiting if the nausea is too bad, but hopefully it will not be.  There are some other possible worse side effects with this drug, but they tend to be rare so hopefully nothing else will happen.  Since she is only taking one dose, hopefully it will not be enough to cause any of these other problems.  Also, even though the nausea can be worse, she is only taking it on day 1, so the effects should wear off in a week or less rather than last the entire 21 days.

Because of all these changes, we will need to go through another "training" sessions with a nurse.  The doctor also needs to write up the new protocol and submit it, so we will actually skip a week and cycle 3 will not start until June 8th instead of June 1st.  This is good in that Barbara may actually feel pretty good for a week or so, but bad because it stretches things out another week.  Always a trade.

Given her reactions, the doctor did mention that one option was to stop the Chemo completely now and do the CT scan and potentially go right to the surgery, but he recommended that she do the third cycle to increase the probability of a maximum benefit from the Chemo.  Barbara agreed she wanted to increase her probability of long term survival as much as possible (as I am sure we all want).

The CT scan will be done about 2 weeks after she starts cycle 3 (around June 22nd or so).  They do not want to do it too soon to allow the Chemo to have as much time as possible to work, but do not want to wait too long so we can get on with either surgery or something else.  I did get the understanding today that the primary reason for the CT scan at this point is to look for changes, mainly for the worse.  Since the first CT scan did not really show the cancer, the hope is that the new scan will also not show anything that is obviously cancer but it will also give them something to compare to her first scan.  The first scan may not have shown anything that jumped out as a problem, but by comparing the two scans to each other, they can look for changes, both good and bad. Hopefully it will only show positive changes.  After the scan and then evaluation, the Oncologist and Surgeon will discuss what should happen next and then we go from there.  Most likely scenario is that we will schedule surgery for sometime soon (likely several weeks) after that.

A note on the surgery.  I was doing a little research on the recovery from this surgery and it sounded worse than we originally thought.  It really sounds like the first few weeks (7-10 days in the hospital initially) may be very miserable for her- worse than most surgeries.  We will get a lot more details when we actually sit down with the surgeon, but at least now we are a little more prepared about what to ask and to expect.  I think what I was reading tended to be the worse case about a lot of the potential issues.

I hope all of this makes sense.  There probably won't be much to report until we go back on the 6th and then the 8th for treatment, so I may not do many updates between now and then.  In fact, depending on how she is feeling, we may try to get away for a few days next week since it may be a long time before she is up to it again.  If something does not make sense, please send me an email or leave a comment and I will try to clarify.

Wayne