Friday, September 29, 2017

CR 827: Another good CT scan (I think)

On Tuesday I went into Kaiser for another CT scan. Drank the banana smoothie-flavored barium contrast 4 hours and 2 hours in advance, got my blood drawn for my labs, then had three more sticks as a rookie CT tech fished in my arms for a vein. I wish that Kaiser could just use the same needle and vein for my CT as they do for the labs, but that would take planning, coordination, and concern for the patient. I have never quite mastered the art of patience while nervous techs try multiple times to properly place an IV. I am not your pincushion.

Once everything was in place, the CT took seconds. Following injection of the ionic iodinated contrast, I felt the familiar feeling of warmth as it triggered an increase in intravascular osmolality, causing a shift of water into the veins. This increase in blood volume caused vasodilation that spread throughout my body in seconds, lodging in my pelvis. Cancer has significantly improved visibility with iodinated contrast. 

I've long gotten over "scanxiety" -- the fear of what a CT may reveal -- since I've accepted that a CT is purely retrospective: it shows what has already happened. Plus, I'm utterly at peace with the fact that I don't control my cancer, and learned long ago not to worry about things I can't control. I have, however, thought about the frequency of my CT scans -- I've had nearly 30 in the past 6 years -- and whether the 20+ milliverts of radiation exposure is worth the risk. I've shrugged my shoulders and assumed that its far more likely that my mets BC likely will kill me before any CT-induced cancer could manifest itself and willingly laid down on the scanner.

After the scan was done, the fisherman tech reminded me to drink lots of fluids, which I consistently interpret as medical orders to go to McDonalds for some sausage and egg burritos and several liters of Diet Coke. I slurped my soda as I drove down to Lake Anna to get another load of stuff from our lake house, which is finally under contract. It will be good to unload that -- we had lots of good memories there, but with our nest empty it's time to let someone else enjoy it. 

As I was returning home, a nurse from Kaiser called me with the results of the CT. She said that the radiologist had not seen any signs of new metastatic activity. Yay! However, the radiologist detected a new scar on the upper right lobe of my lung, about 13 mm long and 3 mm high. She could not determine what caused the scar, but did not see it as a cause for concern. "We'll continue to watch it," she said. Humm. I was glad that I was scheduled to go up to Hopkins on Thursday to check in with Dr. Hahn as part of my follow-up for my clinical trial. I wanted his thoughts.

Yesterday I drove up to Hopkins with the CD of my scan. Dr. Hahn spent some time studying the CT scan, and could not make out what the Kaiser radiologist had reported. He said he'd have the Hopkins radiologists study it, but saw no cause for concern. 

We also discussed the latest durability data. He said that the longer term data from immunotherapy patients in other trials with other malignancies (mets melanoma, kidney, lung) continued to suggest that patients who got to 24 months of remission lad a low risk of recurrence. From a biological standpoint, he thought that it was highly likely that all of my cancer cells that had the PD-1/PD-L1 interaction had been destroyed by my body's immune system. There was always a possibility that I had some stem cells harboring that type of cancer, but as time goes on it becomes less and less likely that it would manifest. The bigger question is whether another mutation would start growing. Dr. Hahn had previously told me that was the most likely thing that would happen. But as time goes on, the likelihood of that happening decreases. These thoughts continue to be assumptions built upon extrapolations built upon suppositions, since "I am the data" for metastatic bladder cancer durability. 

We also discussed the frequency of future CT scans. Dr. Hahn wanted me to have another scan in 12 weeks, which would bring me to one year after ending my infusions of nivolumab. He could not remember if the clinical trial protocol contained guidelines for the frequency of CT scans following 1 year of completion of treatment, and would look into it. He suspected that at some point, he'd want to shift from 12 week intervals to 16 week intervals, and eventually to 26 week intervals between scans. I'm ok with that. 

Today, I received the report from the Hopkins radiologists. They compared this scan to the 13 earlier scans that I have had since February 2015 (when I started the clinical trial), and saw no new lesions. My target lesions -- the tumors that they used to determine the success of the Opdivo -- continued to be totally undetectable. My non-target lesions (other tumors of note) also continued to be undetectable. So what did the Kaiser radiologist see? To quote Shakespeare in Love: I don't know. It's a mystery.

October 9, 2017 addendum: Dr. Hahn sent my CT for a second opinion, and today that reading was posted by Hopkins in my chart. The radiologist saw no evidence of any metastatic activity or other abnormalities, other than "patchy bilateral ethmoidal mucosal opacification" e.g., some solid mucus in my sinuses. Woot.

11 comments:

  1. Ken glad to hear of your continued remission. The doctors may want scans for their paperwork, but you may want to decline the next scan and start a six month regiment as it is likey that you have a durable cure that you are now risking with scan radiation. If they saw any growth obviously you'd want to monitor that, but irradiating you to see the same picture over and over again is not worth it.

    I had a lung "nodule" observed in one of my scans that went away in the next scan, likely just a result of a cold.

    Karl

    ReplyDelete
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  2. Sorry, to add to my last comment: I'm 4.5 years out from non-mets stage 3/4 BC and while I deal with the new normal of life with a neobladder I'm cautiously optimistic that I'm cured and you should be too. I had pre and post chemo scans, but then the doctor went to six month intervals and now I'm at a year.
    I think now you should live your life presuming you are cured until proven otherwise and assess the risks of scans based on that outlook.

    Karl

    ReplyDelete
  3. Ken, so appreciate you including all the detailed discussions with your doctor. My oncologist gives one line answers like, "we don't know" or "outcome can be different for everyone". She never ventures beyond that. I have learned far more from you & your doctor than mine. I am about 10 months behind you on a Keytruda trial with almost identical results. little bet/BCAN

    ReplyDelete
  4. I have recently been diagnosed with metastatic bladder cancer, after surveillance scan (8/22/17) detected masses in liver and potentially pancreas and pelvic area. I will be starting a clinical trial using Pembrolizumab on Tuesday (10/17/17). Dr Hahn at Johns Hopkins recommended the trial when I visited him for a second opinion in September. I am excited to start treatment and hopefully for a good response. I am a 53 year old female, originally diagnosed in March of 2015 with stage III after being misdiagnosed for 3 months with UTIs. A CT scan discovered the mass in my bladder and soon after most of it was removed in a TURBT; followed by neoadjuvant chemo and later an RC (w/ neobladder reconstruction) on August 4th the same year. Lymph nodes removed during the surgery tested positive for BC and so close surveillance was required; CT scans and blood work every 3 months until February 2016. At that point my oncologist felt comfortable with moving scans to a 6 month regiment. I was not happy (or comfortable) about the decision, and now there is a golf ball sized mass and marble sized mass in my liver, a nodule on the tail of my pancreas, and an "area of concern" in my right posterior hemipelvis. Angry doesn't even begin to describe how I'm feeling.
    This past January I had the good fortune of meeting Stephanie and Erwin Greenberg and the team of professionals from Johns Hopkins Greenberg Bladder Cancer Institute. I am grateful for relationships and communities that have assisted me (and others) in navigating through this difficult, elusive, and unpredictable disease. I look forward to reading more of your blog; to gain insight, and find hope and support.

    ReplyDelete
  5. Ken I am very excited about your continuing NED. I found your blog during the dark days of waiting for path results and treatment plans, 2 1/2 years ago. I have been cheerleading and oraying for you since. May you continue your NED- ness. And please continue updating your blog.

    ReplyDelete
  6. Hi Ken we have not heard from you in a while. Give us some news.

    ReplyDelete
  7. A journal of my battle with metastatic ("mets") muscle invasive bladder cancer, chemotherapy, surgery, clinical trials and my complete response ("CR"), and the joys and travails of life interventional radiology chicago.

    ReplyDelete
  8. Hi Ken
    Had RC in 2011, go for my once a year CT Tuesday. Hope the Kaiser tech learned on you, so they will have it down pat for me.

    ReplyDelete
  9. Hi Ken,
    I only found your blog 1 week ago, and wanted to tell you how helpful it is to read someone else's account of their journey, particularly in such detail.
    I have just received my 2nd infusion of Nivolumab. In my first 2 weeks after the injection I found the lymph nodes under my left arm became quite swollen. This kept me awake at night until I read that you had a similar experience.

    I'm just hoping my outcome will be as positive as yours.

    Michelle

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