#1 of 18

Yesterday was chemo #1 of 18.  17 to go!  I don't feel too crappy at this point.  The infusion center was nice and comfy and the nurses were super nice.  One IV was placed, the only one, since I am having the port put in tomorrow morning.  I got some good napping done thanks to the anti-allergy meds, with Ethan and Sarah's laughter floating in and around.  The photo here shows the view outside, looking onto the salt flats. 

Plan A

We met with my oncologist yesterday afternoon and now have a plan of action.  On Wed. Aug. 6th I'll be starting 18 weeks of chemo.  Carboplatin and Taxol, similar to 6 years ago since I was obviously responsive before.  The standard treatment is 6 cycles of 3 weeks each (18 weeks total), first week one dose chemo and two weeks off.  Last time for each cycle I did two doses during the first week, one dose in the second week then had the third week off.  This time 18 weeks, one dose each week, no weeks off...  It's an aggressive approach called dose-dense.

No surgery, but maybe radiation after the chemo.  There's still some confusion about this, and my doc is recommending we get a second opinion from a radiology specialist at UCSF.  

First stop, install a port in my chest.  This is where they'll insert IVs and do blood draws.  Much easier than 30+ needle jabs!

Dyslexic Radiologist

The PET scan on the 18th was uneventful- drink a jug of stuff similar to oobleck, followed by an I.V. dose of Lasix to stimulate my kidneys and radioactive sugar which came in a creepy looking metal tube, and then sit as still as possible for about 45 minutes.  After the scan however, I ended up taking a small side trip to the ER...  After getting up off the table, I felt a bit queasy.  I attributed this to not having eaten since the night before, and it was almost 5pm.  So I got a bite to eat, but as I sat on the bench outside of the hospital, I felt worse and worse and suddenly felt everything going dim.  A woman close by helped me put my head down and reminded me to breath deeply, and a nurse passing by called for help.  Unfortunately she called in an incorrect code and an entire emergency crew came running out.  About 15 people with machines, crash cart, gurney, etc...  I was starting to come out of it and was totally embarrassed.  I let them know I didn't need to go to the ER, but they strongly advised that I go get fully checked so off I went. 

Last Thursday I had an appointment with a radiation oncologist.  She went over the PET results and some of the treatment options.  The good news is that the recurrence seems to be only the 2 spots that we had seen in the CT and hasn't spread all over the abdomen or outside of it.  She also noted that the lymph node involved is on the right side, not the left like they had put in the CT report.  Doh. 

So now I'm waiting again until the appointment with my oncologist this Wednesday.  He'll have spoken with the radiation and chemotherapy teams and I'll get to see what's in store for me.  I'm feeling pretty impatient, but I'm semi-successfully trying to enjoy myself in the meantime.  

Anatomy lesson

Unfortunately I'm dusting off this old blog since it seems that after 6 years I am having a recurrence.  To sum it up, my ca125 went from single digits at the end of 2013 to a series of rising results starting in May.  35 to 41 to 49 to 75 during the following two months.  July 2nd I did a CT scan which showed 2 or 3 growths. After getting these results over the phone the next day, I spent the week in semi-panic mode.  I should know better and not try to investigate things like this on the internet!  

After my appt. Wed. the 9th with the oncologist I felt calmer.  The CT showed two growths, one in a lymph node, sort of a pencil shape, and the other between my liver and kidney, marble shaped.  These aren't in the same area of the abdomen as my initial occurrence, but in the retroperitoneal space.  I am still having trouble figuring out exactly where all of these various spaces are.  Up until now, I didn't know the abdomen was divided into multiple areas.

Because I tend to go to the catastrophic, I asked the oncologist for a frame of reference and he said that we caught it early and as far as they can tell, it's localized.  He was very optimistic that we could treat this successfully.  Treatments he brought up include surgery, IORT (radiation done during surgery), general radiation and chemotherapy.  Looks like the chemo is certain, the earlier part will be determined by further scanning.  I'll be having a PET scan this Friday which can show active cancer in greater detail.  If there are lots of smaller bits floating around they won't do surgery.  

Emotionally, I'm on the rollercoaster, ranging from denial to gravedigging and all the areas between.  I'll probably feel more stable once we have a more specific plan.

More movement, wrong direction

It's been a while again since I've last posted.  That's good!  At the end of 2013 CA125 was 12 so we went back to checkups every 6 months.  It seemed like a long time, but honestly I didn't think about cancer too much at all.  Last week the blood test on May 2nd showed the numbers up to 35, we retested on May 7th, up a bit more to 41.  The plan is to retest again in 4 weeks.  My onc is still saying he doesn't think it's ovarian cancer, but it's hard to not worry... 

Mice

More results- CA125 went up only by 1 this time, and last month's HE4 went up, but nothing that concerns the oncologist.  After talking about my latest test results, he asked if I had been around mice lately.  A very strange question!  He is wondering if I am having a Human Anti-mouse Antibody reaction.  When he said this, I had visions of Tom and Jerry and I wasn't sure if he was being serious or not.  But apparently mice antibodies are used in some treatments and radiology tests (not too sure about the details yet) and these can cause the CA125 test to show as elevated.  So my next blood test in 3 months will include one looking for the HAMA response.

An unrelated coincidence I'd like to note- I sat reading my book, Siddhartha by Herman Hesse waiting for the doctor.  The current intern came in to introduce himself, and guess what his name was?  Yes, it was Siddhartha.  

Good news this time

The rollercoaster ride is  p
                                               l
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                                                     n
                                                        g
                                                           i
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                                                                  g

CA 125 went from 38 all the way down to 27!  HE4 results not back yet, but I'm suspecting it will go down too.

(This blog has really just become a way for me to track my numbers, since I can't remember things anymore.  Sorry for the tediousness.)