The (Positive) Power of One Little Number

As a mirror to my post in February called “One Little Number”, I wanted to write a very short post tonight called “The (Positive) Power of One Little Number”  It shows the wild-emotional swings of Stage IV cancer – as you careen back and forth between positive and negative data.

The number referred to in both posts is the blood tumor marker: Carcinoembryonic antigen (CEA).  It is usually monitored during Stage IV colorectal cancer (CRC) treatment except for in patients where it never leaves the “normal range” (showing that it is not a good tumor marker for that particular patient).  My CEA values stay low but they do move up and down in response to growth or shrinkage of my tumors.

I spent all day today in the chemo infusion center – receiving the FOLFIRI chemo infusion  + Avastin (bevacizumab).  Not the most enjoyable day.  Especially tiring because in addition to chemo toxicity, I was in the middle of a 60 hour no nutrient fast (to be the subject of a later scientific post!).  Moments after I got home, wiped out physically and mentally, I was about to go to sleep when… an email arrived on my phone!

Now, as I mentioned in the February post  – all clinical signs are pointing to successful shrinkage of tumors.  But still, opening that one little number brings a sense of fear into my mind, no matter how much I try to suppress it.  Fear compounded in particular this evening by infusion fatigue and toxic side effects.   I slowly opened the email.

THE CEA VALUE TONIGHT: 5.3 µg/L 🙂

To put in relation:

At the start of FOLFIRI last fall, it was 8.2 µg/L

At my Stage IV diagnosis (minimal disease – it took almost a year to decide I was Stage IV) in June, 2014 it was 3.2 µg/L

After only six FOLFIRI infusions, the number is already half-way to the my Stage IV starting point almost 2 years ago!

A Very Good Day on the Battle Front_Cartoon_Mad Scientist_Celebrating

The FOLFIRI chemo + Avastin clearly appears to be continuing to work (although it requires definitive proof from a CT-scan)!  But since both the CEA test and clinical signs (and the CT-scan in February) are all in agreement, I am very confident right now that FOLFIRI+Avastin is continuing to shrink my tumors.

I am not expecting a cure from this chemo.  What I am praying for is long-term stability.  To make the chemo side effects worth it. To be here as Dad to my two little girls for as long as possible with “Stable disease’, To buy me time… and all I need is time… for the immunotherapy cavalry to arrive!

Some months, the little number is scary when it arrives.  Other months, like tonight, it is joyous.  But always… it is amazing how much of my life continues to be governed by one little number.

On that note, as someone currently filled with almost 10 strong drugs – including two highly toxic ones attacking my tumors as we speak – I think I’ll say GOOD NIGHT! 🙂

25 Comments on “The (Positive) Power of One Little Number

  1. You had me at emotionally wild mood swings. Today I saw my onc for first-time. Heard 2-5yrs, I know I keep hearing don’t listen to the stats, I know I’ll get there but today I am, so I honor
    where I’m at, knowing this will pass.

    Congrats on your “one little number” & thanks for sharing your terminally optimism

    Liked by 1 person

    • Statistics are seriously useless aside from choosing between treatment options. I am friends with multiple CRC survivors (that are currently incurable like me!) who are still living >5+ years out from diagnosis. Although the “average” patient patient may not live that long – you need patients on “both sides” of an average to make an average. So my decision was to; “why assume I can’t be the long lasting person? Why assume I’ll be one of the short ones?”. In terms of the disease, approaching my 4 year cancerversary, I would still have no idea I had cancer without scan data telling me I did – I have no symptoms, I just signed up to run a team triathlon on May 1 – even with my 7 or so lung tumors! But that doesn’t mean I’m ignoring my disease or its seriousness either… read through old posts and you’ll see the strategic decisions I am making in order to try to live as long as possible. I recommend the “Anti-cancer” book in my “books” tab at the top right corner of the blog. I’m glad you found and enjoy my blog! 🙂 -Tom

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      • Thank you very much, it was perfect timing to hear some very supportive & experienced words..

        Like

  2. Am so in the same place. Round 5 of FOLFIRI+Avastin after 7 month break (but 2 radiation treatments for distant lymph metastasis). Have fasted (water only) for 60 hours for last 5 treatments and previous 12. CEA just popped up to 6.1 from 4.3 hopefully from chest inflammation caused by nuelasta. Can’t wait for your post on fasting.
    Thank you for your fabulous words, so upbeat and encouraging, love the idea of the immunotherapy cavalry!!

    Liked by 1 person

    • Hi Shanbrock6, I have a question, but don’t really want to say here (I’m sure everything’s been said, but being new to this journey, )
      Am I allowed to give you my email address or vice versa,, btw if I’m not doing this blog thing correctly please let me know, , thx

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      • Hi Kelly,

        I checked with Shanbrock6 and she would be happy to connect with you by email. I just connected you two via the email address you used to post this comment.

        Thanks for reading & all the best! -Tom

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  3. Hooray! I’m happy to read this too. Now, you’ve given me the incentive to ask Jim’s doctor today about adding Avastin back to his regimen. He was on it for awhile last summer and was taken off of it when they did the radiation to the spot on his lung. Unfortunately, his blood pressure went wacky and they halted that drug for several weeks until we found a blood pressure drug that worked. Lo and behold, numerous spots appeared during those few weeks so his body went from being in clear broth to chunky stew. He’s been working his way back to broth again but they didn’t add the Avastin back to his current treatments. These ups and downs with this little number is grueling indeed when it starts climbing which Jim’s number has been creeping back up during the past 6 weeks. It was trending down earlier this year. We never give up as we too want that long-term stability. We’re coming up on his 3-year anniversary from his first chemo treatment next month. It’s a wonderful anniversary to celebrate since he was given 6 months as a prognosis at that time! Every day is a gift and we certainly appreciate these gifts. Enjoy the ride.

    Liked by 1 person

    • I love your attitude! Definitely discuss with Jim’s MD about re-introducing Avastin. It can have serious side effects in some people but it also does improve efficacy statistics. Also there have been scientific papers (preclinical) that show significant synergy between Avastin & Cox-2 inhibitors such as aspirin although this paper used the more expensive Celebrex with Avastin [ http://www.ncbi.nlm.nih.gov/pubmed/24964992 ] – something else to discuss with your MD to get medical advice (I am a PhD who can discuss science, not a MD who can give medical advice). Keep enjoying your ride!!! -Tom

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  4. Such encouraging news. Had my labs drawn yesterday and CT scan of lungs on Friday. Hoping for stable news.

    Liked by 1 person

  5. Again, Tom, I am so impressed with what a ROCK you are and how much you inspire others. I don’t know if you’re following Jane’s Caring Bridge site or not, but we’ve been told by her oncologist she is in remission and there is “no rush to treat”…given her emergency intestinal resection caused by the intestinal tumor “disappearing” and leaving a hole in its place. She has 4 treatments to go once the incision has completely healed.

    Liked by 1 person

    • Fantastic news on Jane & remission! I need to sign up for email updates on her caringbridge – I can miss listing of news ones on Facebook- Give her my best!

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  6. Dear Dr. Marsilje,

    I have found your blog when searching some information on immunotherapy/vaccines for CRC as my mother (who is 61 and a physician as well as me) was very unexpectedly diagnosed with metastatic colorectal cancer (we still do not know whether there is some significant neuroendocrine component – NSE and chromogranin were high, but histologically there was only adenocarcinoma in the tissue samples). She is now getting FOLFOX biweekly and this week an EGFR inhibitor will be added to the therapy.

    I have read many of your post and it has been a roller-coaster reading with crying and smiling. I have even dreamed about you inventing an anti-metastatic filter, similar to caval vein filter, but it was in portal vein and it had some clever immune cells inside that destroyed cancer cells….

    Your blog is wonderful and it provides a lot of (scientific and other) hope and comfort to someone who is trying to navigate in the crazy internet world, friend’s suggestions, my own father’s ideas (he is an endocrinologist/nutrition scientist used to advocate for metformin in some type of cancers, but the evidence is not as clear as it seemed to be…).

    Unfortunately, there is no comparable source of well-founded scientifically data, personal experience and links to other sources available in Czech republic respectively in Czech language. I have seen that your blogs are being translated to Spanish, Chinese and Russian and I would like to ask you whether I could translate some of the posts (or all of them if you would agree) to Czech?
    My English is not perfect and I know that Czech audience is nothing comparable with Chinese or Russian, so I thought also about translation into German (as I have worked in Switzerland until recently and I am fluent in German), but there are more resources on CRC in Germany than in my country. If you would be interested and agree, it would be great honor to (try to) translate as much as my time schedule allows me into Czech.

    I am looking forward to your response and if you do not have time and energy for it I will 100% understand and look forward to your other posts, hopefully with mor eand more good news (congratulations on the CEA!)

    Kind regards
    Michaela

    Liked by 1 person

    • Dear Michaela,

      Your words and your translation offer are very kind! I am glad you enjoy my writing and that it has brought you Hope & comfort. I am wishing all the very best for your Mother.

      I have your email address from your comment registration, I’ll think through & consider your offer and be in touch…

      All the best, Tom

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  7. How much aspirin do you take each day? Does this cause any bleeding or healing problems? Your girls are learning so much about life by sharing this journey with you. We are all with you and I am daily deeply humbled by your willingness to give so much hope to others.

    Like

    • Hi Maggie – thank you 🙂 In terms of aspirin, the medical recommendations are very patient-specific so that is best handled by your MD. From retrospective clinical trial data, some data indicates that a daily low-dose strength aspirin may have an impact on CRC, some data point more to potentially needing a daily full strength. The most important thing though is the Hippocratic oath “first do no harm”, which comes down to a discussion with your MD. Only if he/she supports its use from a side effect profile, there are signs aspirin use could potentially impact CRC. Take care, Tom

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  8. Tom – I am also a stage IV non-surgical candidate who is on the Folfiri / Avastin regime. Diagnosed last year at age 49. I have remained positive and look at things as you are. I’m hoping to buy enough time for the breakthrough cure we seek. I can tell it is close. Thanks for the blog – very informative.

    Like

  9. Tom, how often do you get your CEA tested? My husband was DX stage 3B did 12 rounds of FolFox in 2014. In Dec 2015 elevated CEA led to testing and found mets to liver. He had liver resection this Jan and the surgeon did a post CEA test which was 1.8. His oncologist had tested before surgery it was 5.8. His first diagnosis was only 5.7 so like you his CEA marker has always been low. Jeff is on Treatment #3 of 12 for Folfiri w/ Avastin. We were not sure if we should ask for another CEA test or just wait till the treatments are over. Your advice is welcomed. Thank you. When he was NED, the oncologist took it like every 3 months.

    Like

    • Hi Kayla, I can’t give medical advice for how often your husband’s CEA should be tested but I can tell you I have seen quite a range of opinion between different MD’s of fellow patients. My personal oncologist checks once a month during active treatment which I think is reasonable. I know fellow patients that get checked more frequently – other less so. The test is pretty cheap so if you would prefer a more frequent test during treatment – I think personably reasonable to make your wishes known to your oncologist. Good communication is important in the oncologist-patients/caregiver team. Best of luck with the treatments! -Tom

      Like

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