Monday, January 9, 2012

Final comments about the clinical trial - 9 January 2012

On November 11, I was given the 5th infusion.  All went well except for the restless leg syndrome - again.  On December 6, I was scheduled for the 6th and final infusion, after which I would be on maintenance.  In the month between the 5th and scheduled 6th, I developed the one side effect they look at very carefully - rectal bleeding.  I had thought it was hemorrhoids because I had had such difficulty with constipation after the 5th.  However, it turned out to be colitis - again!  Avastin and Ixebipilone are the two culprits for developing colitis.  I had a sphygmoidoscopy scheduled for two days after the scheduled 6th infusion.  Because it becomes a real issue with the chemo drugs, Dr. Behbakht preferred to have me skip the 6th until he had the results of the test in two days.  The sphygmoidoscopy showed that it was not hemorrhoids, as we had suspected, but full left-sided colitis.  Therefore, I am done with chemo and the clinical trial.  There would be real danger for me if I were to have continued with the trial.  Ethically, they could not continue giving me chemo drugs which cause rectal bleeding.

At first I was concerned that I had not gone the full six cycles.  However, I contacted Dave's cousin (an oncology radiologist).  When she called me back, she laughed!  First of all, she reminded me that I had barely qualified for the clinical trial to begin with (that 1/4" on the omentum), I went into the trial absolutely clear of all cancer and there is absolutely nothing magic about having 6 infusions!  She told me that clinical trials' and chemo procedures' doctors and teams got together and decided either one infusion, six infusions or twelve infusions would become the standard of treatment they were going to offer.  That means, there is nothing magic about six - it could have been five or seven.  Since I had been given five infusions successfully, Dr. Behbakht feels confident that I got what I needed.  Dr. Fallah (Dave's cousin, Juliet)  said she expected that the first infusion took care of everything needed. I saw Dr. Behbakht on December 6th and had had a CT scan the week before.  I am still clear.

By Christmas, I was feeling pretty good but still iffy with the colitis.  The two side effects that are still bothering me (now two months after my last infusion) are blurry vision and sinusitis.  Both are expected to clear up anywhere from 2 months to 6 months from my last infusion.

One good effect of the chemo was to prevent symptoms of my RA from flaring up.  I no longer benefit from the chemo - it has left my body, so the RA is effecting me slightly.  The colitis has completely cleared up and I will see my gastroenterologist on January 19.  To keep that at bay and to eliminate the RA symptoms, there is a chance he will put me on Remicaid, which will be done by infusion.  I have not had the port removed so it would be easy to get that and I wouldn't have to leave Estes Park to get it.  I can receive it right up here at the Medical Center.

One of the most frustrating things for me right now is that I am fatigued.  I have no energy and tire easily.  Dr. Behbakht says that will clear up, again, in that 2-6 months period.  I am going to try to get back into exercising on the recumbent stepper which has no adverse effect on my knees.  I did well on it when I was first starting chemo, but stopped it.  I probably shouldn't have!

Other than the pesky side effects, I really do feel fine.  I had worried that after the 6th infusion, I would be anxious NOT getting the chemo, mainly because this was what had been saving my life over the last eight months.  However, when the colitis interrupted the cycles and became more of an issue, I went straight through that anxiety and have none!  I don't look back on it as having been a traumatic series of treatments.  The biggest disruption to my life was the diagnosis.  From then on, it was "It is what it is!"  I have had tremendous support - physical, mental and emotional from my whole family and all my friends.

Since I am now off the clinical trial, I was concerned that my data would not be included or added to the data for the trial.  It will be included and Dr. Behbakht will continue to follow me for the next x years. I actually don't know how long that will be but I am optimistic that the medicine I have had will have done the work for which it was intended.  I keep going back to the report of the tumor board in Fort Collins that said if I went through the chemo, there would be a very low risk of recurrence.

There is that same something in my left breast that Dr. Behbahkt would like to have biopsied.  I see Dr. Medgsey on the 30th and she doesn't want me to have any tests until then.  She told me she doesn't want me to have another mammogram until I would be due for my annual one sometime next summer.  It was either July or August - can't remember which month - it's a bit of a blur.  In any event, I will have that, probably another ultrasound and then the biopsy.  I am not concerned.  It is something Dr. Behbakht wants to check off his list and since no one is particularly concerned about it right now, neither will I be.  I have been researching another breast examination - thermography.  Apparently, it does NOT show what they would be looking for and the biopsy will clarify everything.

That's it for now.  As I have new tests and get the results, I will post those.  However, I would really like to put all this behind me and get on with living!

Thank you all for reading my blog and for supporting Dave and me through all of this.  We are returning to 'normal', and I look forward to picking up and renewing those things I have enjoyed doing.  I am still tatting, want to get back to stitching and playing the dulcimer.  I haven't touched it in eight months - not by choice, but necessary because I had one thing and only one thing on which to concentrate.  Now I am beginning to see the light at the end of the tunnel - and it isn't a train coming at me.  I resume my normal activities, including being president of the Estes Park Genealogical Society, with a meeting this coming Thursday.  Since I don't have the energy I before all this began, I will take it easy and not push too hard, resting when I need to.

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