Update and What's Happening

Wow, I just realized it has been quite a while since my last update.  Part of that is because it was a rough few months, but also, part of it is due to me writing for LungCancer.net.  My apologies to those of you who follow my progress via my blog.

Let's start with my Lung Cancer.  I still have scans every 3 months and thus far my Opdivo is working fantastic.  Each scan shows either NO growth or slight shrinkage of my tumors.  This is great news.

Now the not so great news.  As I posted a while back, they discovered that I have Bladder Cancer as well.  It is NOT metastatic.  It is a separate cancer.  In July, I had Bladder Surgery and the tumor was removed.  The plan was for me to get six immunotherapy treatments which would be placed in my bladder via a catheter.  I then I had keep it in there for 2 hours.

Well, as you know, my Opdivo is an immunotherapy.  When my Oncologist found out, she freaked.  She immediately called the Urologist to discuss what was going on.  The final decision was that I was to stop the Bladder Cancer therapy because as we know there have been years upon years of studies on immunotherapies BUT NONE for people who are having 2 different immunotherapies at the same time.

Okay, so now what?  Apparently there is a different chemotherapy/immunotherapy drug called Mytomycin that they decided would be a better choice.  I began these treatments in August.  The first two or three weren't too bad.  A bit of pain for a day or two and trouble urinating.

Then the bottom fell out.  On my fourth treatment, I was in extreme pain in my bladder.  It was spasming.  I felt a constant urge to pee!!  And I mean constant.  Then I broke out in hives from my neck to my toes. Between the pain and itching, I didn't know where to begin.  This lasted 9 days.  Of course, I called the Urologist and just my luck he was on vacation.  The nurse did reach him and he said that I should stop my treatments immediately (just the bladder) and we would wait until my next scans in October to discuss what to do.

The probability of Bladder Cancer tumors coming back is high - even with treatment after removal.  So I'm not sure where this leads me.  Since these two drugs are the only options for me right now, we have to wait and see.  At least both doctors are in agreement that my Lung Cancer is the priority.  

I will update again soon, I promise.  As soon as I know what is going on. In the meantime, I will just continue my Opdivo every two weeks.

Bladder Surgery

If you follow my blog, you know that last month I was diagnosed with Bladder Cancer, in addition to my Lung Cancer.

In 2 days, May 11th, I will have surgery to remove the tumor and I will be Staged at that point.  After testing, staging and surgery, I will know the exact treatment going forward.

Even though it is distressing to have two cancers at the same time, it is comforting to know that Bladder Cancer can be easily managed (In comparison to what I'm used to with Lung Cancer).  And, I can do both treatments at the same time.

I may be a bit spacey afterwards, so I may not update for a few days, but will post as soon as I know anything more.

I thank you and ask for your continued prayers

Endobronchial Ultrasound Biopsy (EBUS)

The other day I let everyone know my doctor feared a recurrence of my cancer and scheduled my EBUS yesterday.  Well, after my alarm not going off, Greg and I made with 5 minutes to spare.

That was the good news.  The bad news is the cancer is back. it is in my lymph nodes in my chest - and that is the only place.  (I had a whole body PET Scan and only my chest "lit up").

At this point I can only tell you where the pathologist confirmed during the procedure.  Luckily for me, at the Main Campus Cleveland Clinic a Pathologist sits outside the room and they hand him samples and he looks under the microscope.  He confirmed it is in my Hilar Lymph Nodes (several yellow dots on one side) and has also progressed and moved to the middle (dark blue dots).The doctors told me they took DOZENS of samples and will have a full report in 2  to 3 days and will know if there are other lymph nodes with cancer too small to see.

I have so many questions and won't have any answers until the Pathology Report is complete.  My Oncologist knows the preliminary spots and wants to see me the day after the report is complete.  So my hope is either Friday or Monday I will be seeing him to determine what to do next.....chemo, radiation, surgery??? I have no idea.

I was originally diagnosed as a Stage IIIA.  My understanding is once it moves to the middle I will become a Stage IV.  Again, I need to meet with the oncologist to get the full story and what we can do.

I will post as I know things.  Kind of in a fog right now with my mind going a mile a minute.  Needless to say, even though I overslept my alarm yesterday, last night I was up about 20 times pacing....

Official Biopsy Results

Can we shout YAY!!!! Biopsy from Monday's surgery included 4 lymph node samples from my mid-chest - NO CANCER in any of them which makes it officially Stage 2 Lung Cancer with metastasis to the Hilar Lymph Nodes.

Finally some "official" good news.  It's funny to me how telling me "your lung cancer and metastasis is confined to one side" can be good news - but that just goes to show how priorities and emotions have changed since February 20, 2014.

On a side note - still recovering from surgical biopsy.  NO neck pain anymore and last night, although I slept in the recliner, I slept for 6 hours straight - that is the most I have slept since last Saturday :)  Incision site still painful but appears to be healing nicely - had to change the dressing today (which hurt like hell).