Apr 272018

On Monday, I went to the cancer center for my PET scan. When I got there, I had to go upstairs to get my port accessed, then back downstairs for the scan. The technician injected me with a radioactive substance, after which I sat in a small room alone for an hour waiting to become “radioactive.”

The test itself took around 20 minutes. Then came the long wait to see what my future would hold. My scanxiety was pretty high for a couple of days.

On Wednesday, I went back to the cancer center for my Keytruda treatment and to see the oncologist. Again, I went upstairs first, this time to get my port accessed and my blood drawn. Then I went back to see the oncologist, dreading the news I had pretty much been expecting since my sodium had started to drop again.

And I wasn’t wrong. After almost a year and a half, my cancer had found its way around the Keytruda. As of now, I have just one enlarged lymph node in my stomach, but it’s malignant. The doctor said there were three options: 1) have the tumor removed (which nobody will actually be willing to do since another one will just pop up somewhere else; 2) radiation to my stomach; or 3) chemotherapy again.

I asked the doctor which he would recommend, and he said chemo. After my last two rounds of chemo, I’d sworn to never do it again, and a part of me thinks all this is useless and t’s time to just throw in the towel. But giving up isn’t really in my nature, so I numbly agreed to the chemo.

I also asked what kind of odds there were the chemo would work, and he said 50/50. But I know he’s only talking about getting rid of this one mass. There’s really almost no chance that another tumor won’t pop up somewhere. So I may look into clinical trials and see if there are any new drugs that are showing promise.

The chemo I’m going to be getting is called VinORELBine. The oncology nurse said it wouldn’t make me lose my hair again (Google does not agree), and it wouldn’t make me as sick as the original chemo. I have my doubts. I was given four weeks off, after which I’ll go once a week for treatment. I’m not sure for how long. I’ll ask next time I go in.

On the plus side, my sodium’s holding pretty well for now. It’s been almost a week since I had Samsca. I’m supposed to take one tomorrow and have my blood checked again on Tuesday. If it starts dropping faster than it has been, I may move up my chemo.

Since it looks like I’m running out of options, I decided to also try some alternative treatments. A lot of people on my small cell lung cancer support group swear by CBD oil. Again, I have my doubts, but since medical marijuana is legal in Florida, I asked my oncologist about it. He said, “Try it,” and referred me to another doctor who’s certified to prescribe it. I’ll see him next Wednesday. In the meantime, I’m still doing research on other alternative treatments and on cancer diets. At this point, what have I got to lose?

The only problem with trying to find clinical trials and alternative treatments, and eating a healthier diet, is all that takes time and energy. And enrgy is in short supply. I slept for 10 hours last night, then took a nap about two hours after I got up. I’ve also been nauseated for most of the day. So I’ve accomplished very little.

That’s all I’ve got for now. Thanks for sharing my journey with me.


 Posted by at 8:34 pm

  13 Responses to “Disheartening PET scan results”

  1. One of the many reason I love you is that you are a strong person. You being not only strong enough but strong enough to keep pushing forward but to sit down and write your journey for others to experiences. or/and learn from just proves my point.
    I wish I could do more then pray, meditate and wish this away but I am just a person. I love you some times is the only thing I can say and do.

  2. So sorry to hear this news. I’m a friend of your sister and a huge CBD fan. We have medical marijuana in DC. My neurologist was able to write the prescription and directed me to a specific dispensary. I take Jackson’s Courage, CBD drops that help prevent seizures. No high just help. Friends use other forms of marijuana to counteract the nausea from drugs. I take a balanced CBD/THC chocolate at night and sleep very well and wake refreshed. Everyone is different, so your experience might be too. There are numerous strains of marijuana so one has to try different things to see what works. I take very low doses — four drops of CBD in the morning and one 10mg square of chocolate at bedtime. BTW, my cousin took a job and moved to Florida. He is a chemist. His job is testing medical marijuana so that one can be assured of the dose.

  3. I have seen or heard the CBD oil thing come up several various times over the last few years. The “why not” outlook is a good one to have. Praying for you especially during this tough transition.

  4. Julie,
    Hang in there!! New treatments are popping up e every day.

    FU Cancer!!!


  5. Don’t know what else to say but love you and you are very strong.

  6. We’ve never met. I know Teresa through OTC. Come to think of it, I “know” you through OTC as well–our comments have passed on other threads. Other topics. You are in my thoughts and prayers. I wish you continued strength and resilience. Thanks for writing. You remind me to be kind and appreciate small things.

  7. So sorry to hear the news, Julie. Yet there is hope in the options you were given and in whatever else might pop up in the future. Otherwise, why would you be trying all these things?
    I’ve never met you in person but if one thing comes through from your entries, it’s that you are a survivor. So go fot it!


  8. My Dear, Sweet Julie,

    I cried as I ready your update and tried hard to think of what to say. I know I am grasping at words, but again I must say I love you and I will never stop praying for you, or give up.
    Hate the expression to hang in there, but I so want you to keep fighting. You are strong, but I truly understand what you are saying and why.
    Go for it and keep trying to get some strength back, if only a little bit at a time.
    I wish I could be there to help you both.

    I do love you, and I do believe in God’s miracles. Your deserve one!

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