Here we go again, again, again

I guess each time I can just repost what I wrote at the beginning of the last recurrence, "Things have been quiet for a few years, but now I'm dealing once again with this ovarian cancer.  I don't see it as a life sentence, rather a chronic disease which I'll probably have to deal with the rest of my life. "  It's been 2 years, 2 months since the last one was diagnosed.  Not as long as before, but still really pretty good.  I'll take it!  I had been taking a daily parp inhibitor called Zejula, or Niraparib, which may have helped with the time span. 

In the meantime, here we go again.  Ca125 went up to 12 which was still well below 35 which is considered the "normal" upper limit.  Retested a month later and it was 45.  Shit...  Did a scan, which found some masses in the same place as last time, between my liver and kidney.  Last time was in the Morison Pouch, this time in the Hepatorenal Fossa.  (Maybe it's the same?) A 2cm mass and a series of things described in the report as an "increase in size and number of soft tissue nodules in the hepatorenal fossa, now crawling along the capsule of the right hepatic lobe."  My oncologist said that radiologists are the poets of the medical field!  Last week did a biopsy.  Not really to see if it's cancer since we knew it was, but to gather genetic info to use for future treatments.  I was accompanied once again by Melanie, who really went above and beyond since we hit rush hour on both side of my appointment!  Wasn't thrilled with my care this time around.  Many little things, but the ones that bugged me the most was when the nurse asked me which size needle she should use to access my chest port.  !!  Her not knowing this did not instill confidence.  One of the doctors who had introduced himself to me a few minutes before came by and asked how I was feeling and that I'd be discharged soon.  !!  Also did not instill confidence.  Then when I was ready for the procedure, on my stomach in the CT scanner tube ("superman pose"), I could hear voices which I figured out was the doctor who thought I was a different patient earlier, talking to another doctor.  Then felt things on my back, so I quickly let them know- HEY, I AM NOT SEDATED YET!  Turns out they were just marking my back with a pen, but they could have let me know first, and could have said hello...  It was pretty upsetting.

Now on to treatment.  My oncologist is recommending chemo without surgery or radiation.  I am pretty stressed about this since my bone marrow doesn't seem to like chemo.  I pushed back on this decision a few times, but they had a good reason for it- that since there were multiple spots this time, there's likely microscopic bits too, and chemo will help get rid of them.  I made an appointment for a second opinion with UCSF, but it's not until the end of February.  Which by the way makes no sense to me!

So, chemo- carboplatin, doxil and avastin.  Only once a month though, starting this Tuesday.

More treatment...

   
Surgery went well.  Really well!  There were no other random bits of cancer and they were able to completely remove the tumor with clear margins.  I spent one night and was discharged midday, with 4 small incisions on my belly.  This was a couple of weeks ago already.  Recovery was quick, and I am already feeling back to my old self, which is why I was more floored by the news delivered at yesterday's visit with the oncologist- I still need to do chemo...  I'll be doing 6 rounds of carboplatin and doxil once a month for 6 months.  Followed by a maintenance therapy of daily oral PARP inhibitors to prevent the cancer cells from repairing the damage done by the chemo.

                                                  ( ↑ Carboplatin )

Update on the update

Surgery has been moved one day forward, to Wed. November 1, which is just fine by me.

Unfortunately, Updates

Things have been quiet for a few years, but now I'm dealing once again with this ovarian cancer.  I don't see it as a life sentence, rather a chronic disease which I'll probably have to deal with the rest of my life.  Going many years in between episodes has been great, and it's what I'm hoping for in my future. 




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The latest started back in July.  I was feeling something not quite right in my lower abdomen so got a ca125 blood test which came back 10.  Under 35 is "normal", but my usual is 5,6,7.  We redid it in August and again it was 10.  I was still feeling some pressure and cramping, so a CT scan was ordered and a very small mass was found in my Morison's Pouch, the space between my liver and right kidney.  Next, a biopsy which confirmed ovarian cancer, and a recommendation by my oncologist to have this thing removed.

This Monday I met with a surgeon.  The plan is to start with a diagnostic laparoscopy using a video camera to see if there are other bits of cancer that didn't show up in the scan.  If there is, they stop the procedure and I'll talk to my oncologist about treatment options.  If there isn't, he will remove the mass.  75% chance this can be done laparoscopically, otherwise it might end up being an open surgery.  Date is set for Thursday Nov. 2nd.

6 months later... Good news!

Last week I did a PET scan, and this week got back some fabulous results!

IMPRESSION:

1. Previously demonstrated hypermetabolic lesions in the liver and retroperitoneum have resolved. Findings are compatible with complete metabolic response. 

My ca125 numbers had remained low over the last 6 months, so things were looking really promising, but getting this scan result really lets me exhale and relax.  I have an oncologist appointment in a few weeks, and I'm guessing we'll just go back to monitoring, with more and more time between visits the farther out we go.  :)  I am so thrilled!!

Wait and Watch

My appt. went well. The radiation oncologist was happy with the way things are on the scan (although he didn't see the scan itself, only the report). But the fact that they shrunk makes him believe we are on the right track, they may still get smaller. He doesn't even think we should scan again for now, just follow the ca125.

Wow, that's great. So does that mean no more chemo?

I think so. But now I need to relay what he said to my oncologist who will have the final word. Not scanning, and not doing anything when there may be cancer cells still in me, makes me (and Ethan) nervous. But maybe this is the new normal and I'll become more comfortable with it.

It is certainly some hard decisions to be making.

More work to be done

Radiation therapy works by damaging DNA, especially of rapidly dividing cells like cancer.  It keeps working after treatment is finished, so I had to wait 3 months before doing a scan to see what was actually happening.  Of course our insurance company denied the PET scan, so I did an abdominal/ pelvic CT a couple of weeks ago, and it showed that the tumors are still there.  Smaller, but still there... 

Now I'm waiting for my appointment with the oncologist.  All I know so far, is that it looks like the plan is to continue treatment.  I did 2 of the 6 rounds of chemo before the radiation, so maybe I'll be picking up where I left off. 

I'm feeling surprisingly level about all of this.  These tumors were pretty small to begin with, and now they're smaller.  Chemo sucks, but I can deal with it.  Meditation helps and so does the tremendous amount of support being continuously offered by family and friends.

Up Next?

Up next didn't end up being a scan, ca125 or more chemotherapy...  I got a call from my husband letting me know of a last minute work trip, and I got to tag along!  Within 3 days we were on the plane to Lisbon where we stayed for a week.  Followed by a week in Paris.  Every other November in Paris is the Month of Photography, so I spent as much time as I could in the galleries.  My energy was lower than usual but I didn't let that stop me and I had an amazing time!

Now we're back.  The icing on the cake...  2 months after radiation I just did my first ca125 and it came back this morning-  5  !!  I am feeling tremendously lucky at the moment.

Next...

10 radiation treatments done in a couple of weeks.  Lots of back and forth to the city, some side effects- a little nausea, a little fatigue and a general lack of interest in food.  Now a week has gone by and these are starting to let up.  And I get another "vacation."  3 more weeks until the next oncologist appointment.  Up next?  Probably another scan, ca125 and possibly more chemotherapy.

radiation

Had my first radiation treatment this afternoon.  Felt a little nauseous a while later, maybe nerves...  At an earlier appointment they did a simulation where they lined me up with the machine and gave me 4 small dot tattoos.  Today they used the dots to position me and did a dry run, followed by the treatment which took about 10 minutes.

Oh, and hey!  I forgot to mention...  2 weeks ago my ca125 was

!!!  8  !!! 

Unexpected change of plans!

A major shift in plans happened at today's chemo appointment.  My platelet count took a nose dive, so no chemo for me today.  Radiation will start on Oct 1st for 2 weeks, so we'll give my body a break to bring all my blood numbers back up.  Red cells, white cells and platelets had all dipped very low.  Radiation will be followed by a month and a half or so break, then a PET scan to see where I'm at.  Probably chemo will start back up at that point, but who knows...

It feels very surreal.  My brain hasn't caught up with the news.  It's telling me I should be feeling miserable right about now, but no, I'm already back at home and feeling great!  It also feels a little scary, like if I'm not feeling crappy then I'm not going to kick this cancer.  But my oncologist reassured me that the chemo was working so the tumors are smaller and this is a good time to do the radiation, and it won't effect my outcome negatively.  I'm definitely going to enjoy this small reprieve! 

Catching up

A lot has happened in the month since I last posted.  I had a port (yes, they had a good laugh in the OR) inserted in my chest with a catheter going into my jugular.  Best part about this day was Melanie.  She was so kind to drive me, keep me company and massage my feet!  The rest of this week involved a total mind/body meltdown, with just about every side effect known to mankind.  Week 1 of each round is a double dose- Carboplatin and Taxol together.  This and recovering from a minor surgery pushed me over the edge.  I was seriously ready to give up but luckily the following 2 weeks were much much better.  An irregular heartbeat and my hair falling out were the main side effects.  Highlights of these 2 weeks were a birthday massage with Sar, my sister returning from Europe and a trip to Pier 24 my absolute fave photo gallery.

Round 2 started off with a visit with my oncologist where they did a ca125 blood test.  It went from 65 down to 31.  Not bad for only 3 weeks doing chemo!  The first week of round 2 was pretty crappy but nothing even close to the last time I did the carbo/taxol combo.  Again followed by a much easier week.  Knowing this pattern makes it easier to get through the more difficult times.

Last week I went to UCSF for a consultation with a radiation oncologist.  He had a different approach than the doctor at Stanford.  He is recommending we use radiation to eliminate the tumors sooner rather than later, and keep doing the chemo to mop up any remaining cancerous cells.  This would involve 2 weeks of treatment.  I'm waiting to hear back from them, but my guess is that this will start in the next few weeks.

One of my seriously low points was losing one of our cancer support group members, Liz Esterly.  I've been going sporadically since I was first diagnosed in 2008.   Liz was one of the rocks of our group.  Always there, always cursing, saying exactly what was on her mind, she kept us laughing and was 100% there for anyone needing support or a hug.  The idea of her not existing is a very difficult concept for me to fathom...

#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
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                                                           i
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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.)
   

Violence Girl

Yesterday I got the results of the second HE4 test- 37, a few notches down from the last one.  This is good!  So today I wasn't too nervous waiting on the exam table for the oncologist to arrive with the results of the latest CA125.  This is lucky, because as I waited, I read the passage from Alice Bag's autobiography, "Violence Girl", describing her sister's last weeks filled with unbearable pain before dying of cancer...  It's a great book, if you can't find it at your local bookshop, go buy it here.

Anyways, I did get my CA125 results, and it went up a little AGAIN.  Not thrilled.  It went from 31 to 38.  The doctor still isn't too concerned and we are once again in wait and see mode.  He said that my type of cancer doesn't hang around increasing in small amounts, that by now we would have seen a large spike in the numbers.  I would prefer to have zero indication of anything happening, but fine,  I'll take these creeping numbers and another 3 month reprieve.