The Odd Couple of Excitement and Worry

What a long strange trip the past month and a half has been as I started my first immunotherapy treatment (atezolizumab + FOLFIRI + bevacizumab), as I reported in my earlier post “Positive Sign or False Hope? Time Will Tell…”.  The first two infusions went by pretty well – their side main effects (tumor site pain, fevers, fatigue) perhaps signs of successful immune activation!

Then something happened

After writing that post, the second infusion side effects (in particular fatigue) did not go away throughout the entire 2-week cycle.  That is a long time to be fatigued.  It is also a long time to be beholden to treatment side effects, effectively not having an “off week”, but if the treatment is efficacious it will all be worth it!

Infusion #3

When I had infusion #3, all of these same side effects came roaring back, but at much higher magnitudes.  The fatigue was now incredible intense.  For example, for the first time since the spring, I was now becoming largely bed/couch/recliner-ridden aside from an occasional excursion outside of the house. This impacted me but also my kids and entire family.  Seeing Dad continuously laying down/sleeping is a lot to handle. It was not just sleepiness though – the fatigue went down to the very core of my being.  To give you an idea of the situation: when I tried to eat lunch and attempted to lift the fork to my mouth – my arm muscles were so fatigued it felt like I had just done 20 push-ups and I had trouble, physically, eating!  My appetite was also fading fast, I think largely due to the fatigue – I was simply too tired to do anything, including eating…  The next morning after a full night’s sleep, every muscle in my body was so fatigued that it felt like I had run a marathon the day before.  All I wanted to do was lay curled up in bed.  In conjuncture, the tumor site pain was continuing – both it and the fatigue – throughout the 2-week cycle.  Once again, it is very tough on a cancer patient in treatment to no longer have an “off week” of normalcy.  The infusion week symptoms were worse but the second week was now catching up & not that far behind.  My eating going downhill… I was becoming worried.  I am at my all-time weight low (115 lbs) so I don’t have a lot to spare!  The continuous fatigue and required pain pills were also starting to impact me mentally – I was at times not thinking straight, the incoherence of a continuous fatigued semi-dream state now intruding into the “real world”.

Worried Homer Simpson

So am I worried right now?  Yes, I am a bit.  So am I still scientifically & medically excited right now?  Yes, I certainly am.  What a psychological odd couple that makes! I may be a terminally optimistic scientist but I am also human.  Due to side effect profile, this is the toughest regimen I have ever done.  Since I have had FOLFIRI/Avastin many times without feeling these effects, for now I am blaming them on the atezolizumab immunotherapy.  Which is a bit disheartening since I have been anxiously waiting to try an immunotherapy PD(L)1 inhibitor for quite a while!  I certainly was not planning for such side effects!!

Excited Homer Simpson

BUT I repeat – that worry is tempered by continued excitement!

I honestly think my current treatment has a decent shot of being active!  This has been correlated with a number of my side effects in some MSI-high CRC patients successfully treated. My will power and belief in the power of science has not wavered.  Do I know this or any of my planned future treatments will work?  No, I don’t!  BUT… that is the nature of science: you are by definition doing things for the first time, venturing off into the great unknown!  What I do know is that my current regimen and the next few planes on my experimental treatment taxiway (nicely fueled up – only thing remaining is final regulatory approval to dose me as experimental n=1 self-trials) are fantastic scientific ideas.  For a Stage IV cancer patient with extensive disease it is impossible not to have Hope in that kind of situation – no matter what side effect symptoms you are dealing with at a given moment – no matter how bad they are!

BTW I have not gone into blog details on the next two plans/planes on the taxiway simply because they are still winding their way through that regulatory approval.  You’ll hear all about them in good time 🙂  And overlaid with this is the continued scientific progress that will fill in additional new treatment planes if necessary.  THAT is where my terminal optimism comes from!  MSS-CRC WILL be treatable with immunotherapy trick(s) – I absolutely promise!  The only thing that I am slightly nervous about is timing – if they are needed, will these breakthroughs occur on MY disease prognosis required timelines?  That goes back to the intrinsic unknowns of cutting edge science… The intrinsic aspect of the Odd Couple of excitement and worry…

Near-term it all comes down to my CT-scan scheduled for October 11 which will give us a sign of whether or not the current experimental therapy is working or not.  I was glad to see my most recent CEA test showed my CEA value had leveled off from its previous rise.  This is great news because the CEA test has been quite predictive for me in the past! If it is working – BRAVO! I will continue, side effects be damned!  If it looks like it is not working – I’ll be disappointed but not depressed or despondent – there is the next plane on the taxiway almost ready to go!

Thank you for joining me on this incredible 5 1/2 year journey ever since I started my “little blog” originally envisioned (but not for long!) for “friends and family” in January of 2015!  Knowing that I have helped others by writing it has benefitted me tremendously and I hope for nothing but the best for all of you.  The past few weeks have been tough and the upcoming weeks may be tough (or tougher) as well – but knowing I am continuing to help you… makes all that bedridden fatigue & pain etc so much easier to bear!  So thank you… Faith in the power of science, faith in the power of an incredible world-wide support system, faith in the power of God to present opportunities – all intertwined to give me continued plausible HOPE.

Due to my intrinsic messiness and certain views on life, just call me Oscar Madison.

To Life!

-Tom

28 Comments on “The Odd Couple of Excitement and Worry

  1. Oscar’s the smiling one… I am constantly weak, but not to the same degree you are as my GI track is largely intact (just a lot of tiny liver dots that want to grow up and become kidneys some day). I was prescribed Nuvigil and it’s helped me a lot. Though treated as if it were an amphetamine salt by regulators, it’s not. I find if I can engage my mind in interesting things, it short-circuits the initiator of the sleep cycle. It’s not helpful with my lost stamina but I remain very engaged in life, just not very physical. As I’ve always enjoyed the ‘sweat of a hard day’s work’ it’s hard to watch someone else do the things I enjoyed, but only a soft disappointment I think. No one I’ve ever met has tried this medication nor shown interest in it. It got a bad name (the earlier Provigil) first because of a Medicaid fraud scheme and later because psychologists think to understand that vast and beautiful place we call the mind by torturing animals. They gave rats a choice between cocaine and Provigil, but the rats showed a preference for Provigil. It doesn’t really surprise me that rodents are more sensible then men about some things. You might read about it; it seems to work on the hypothalamus, but I’ve never read any really good theory as to its mechanism. The best to you, my friend.

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  2. Sending prayers and positive thoughts your way. Keep up the great work!

    Sent from my iPhone

    >

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  3. Also sending prayers your way. Hope you get some great news on your next CT. And thank you from the bottom of my heart for all you do to all cancer survivors and their families.
    Best,
    Farah

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  4. Directing lots of strength in your direction as you continue this treatment regimen. Always rooting for you!!

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  5. Tom you are so brave a warrior. Hope your fatigue etc is better. Looking forward to good news from your cat. Hugs hang in there. I am fighting same battle myself and having trouble with neuropathy in legs feet and hands due to folfox. Hope she gets me off the one drug causing it wants to put me on avastin scared because of side effects bleeding and blood clots. Did you have any trouble with it?
    Bless you keep fighting, will pray for you know how hard it can be.

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    • Hi Marianne – the oxaliplatin in FOLFOX (which causes the neuropathy) is a very very tough drug – thankfully it is also usually a very efficacious drug too! I have been on Avastin for years. Knowing the potential side effects, aside from some blood pressure lowering, I have experienced no other obvious side effects from it. Best of luck in your own treatments! Keep fighting! To Life! -Tom

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  6. Hi Tom,
    Thank you for sharing…hoping for great news on October 11! Just a word of warning about CEA. My husband who was on the Roche trial that included atezolizumab, had his CEA skyrocket. In the beginning it went down under 100,
    but as time went on it went up to 1600 and his was 1500 or so when first diagnosed. His CEA was always a good marker for us so it was scary, but the doctor said it didn’t reflect what was going on with the cancer. Just in case it happens to you, I thought this would be good info to have. Take care! Courtney

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  7. I have felt the chemo fatigue feeling – as if your entire body is weighed down from the inside. But at least I had three weeks between treatments. Hoping and hoping for you that this is working.

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  8. Tom, you are amazing. What you are doing has already helped cancer research and will continue to do so. I look forward to hearing about your CT scan results on October 11.

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  9. Thank you for sharing your journey. I have stage IV crc with mets to the liver. Surgeries and on/off treatment. I too have great faith in science but I’m not too hopeful that strides will be made in time to save me. On a different note, how do you reconcile your faith in science and your belief in god.
    Thank you again and wishing you much strength and courage.

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  10. Hi Tom, I did my first Keytruda 2 weeks ago. I have been living on my couch since. I have been existing in a never-ending loop of pain and deep fatigue. I was thinking of how with chemo cycles you get used to a few days of tough but then get to look forward to the end days where you are almost feeling better. I have been very discouraged with this cycle of no change. With keytruda being 3 week intervals I am afraid I will have to go through 9 weeks of this before I even know if it is working. It is hard to keep up the levels of optimism when there is so much pain, fatigue and unendingness. Thank you for your posts that help me learn about the science of treating CRC. I first learned of immunotherapy on your site at my diagnosis last year. It helped me push for my current path after failing my first two chemos. Thank you for taking the time to share with us in the midst of your own difficulties.
    Beth

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    • Hi Beth, Our circumstances do share similarities! I hope your side effects become more tolerable (maybe ask your oncologist about lessening the dose?) and that you can complete your full cycle – but at the end of the day, you can only do what your body allows you to do… Take care, -Tom

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  11. Continue to be your true self Tom…both the patient and the scientist simultaneously. I have the utmost respect and admiration for your outlook on life given the circumstances. Love you brother!

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  12. Tom- keep fighting. Your optimism and spirit are my inspirations. Praying for success.

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  13. Hi Tom, You don’t know me, but I feel like I know you. You inspire me. I am forever in your corner and in awe of your courage

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  14. Tom, I am so appreciative of the information provided in your blog and your sharing of your experience. Thank you. I was wondering if you are still fasting around your treatment days? I have just finished my 3rd round of Folfori with avastin and the side effects for me have been quite challenging. Constipation then diarrhea. I intend to try fasting next time.

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  15. Hi Tom,
    Words cannot begin to describe how much you’ve helped my family and myself through your blogs. We owe you a depth of gratitude for sharing your optimism and hard work with us. Your utmost consideration of others sharing a similar battle with CRC truly makes a difference in our lives. I thank you from the bottom of my heart.
    We are in a similar boat, mCRC mets to a full liver, lymph nodes and lungs. (The ‘L’s’) and as scary as it is on this end, your strength and pursuit of a cure shines a light on all of that darkness. I’m sorry that you have been going through such difficult side effects. Hang in there, we’re rooting for you and we know that you are so strong! My family and I are optimistic for you, and on those horribly tired days, give yourself permission to rest and be reassured that at those times the battle carries on as others continue to research and push the limits of our current knowledge.

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    • Thank you for your kind message Alex 🙂 Take care -Tom

      Looking at your new reply below, in terms of clinical trial advice, I can not stress highly enough my advice to join the COLONTOWN Clinical Trials group I co-found and now co-admin! I honestly think it is the best source of CRC Clinical Trial information on the web! To start the ball rolling, join COLONTOWN at the link: http://www.colontown.org and then ask to be given permission to join the MSS-CRC Clinical Trials sub-group. I look forward to seeing you there! Cheers, -Tom

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      • Hi again Tom,
        In one of life’s weird coincidences, after leaving you my message, my family and I headed off to an oncology appointment for a “grand reveal” of the results for which type of tumor mutation we are dealing with. We found out that the tumour is MSS! KRAS exon 2, and since standard chemo is not working, our only hope is to find a clinical trial. If you happen to have any suggestions it would be much appreciated.

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  16. Hello Tom,

    Since I chose to follow your journey after I bought that copy of Newsweek last summer, I am very interested in knowing the latest news about you.
    In some ways, that Odd Couple you’re talking about is familiar to me: I am worried not knowing how you are doing (and worried when I read you) and at the same time, very curious to know the main aspects of your medical treatment and to share some aspects of your personal life.
    I am also deeply moved by all the comments posted by all the followers: the way they understand you, pray for you, encourage you and share similar feelings. They are the natural extension of your life blog.

    By the way, I did not know who was Oscar Madison. So I looked for more information about that Odd Couple, and I discovered that Oscar and Felix were close friends with opposite personalities. Of course, Oscar is very attractive, but Felix has my preference. Oscar recognised that Felix has had a positive effect on him, even if he used to say to Felix: ” we’ve always had bad chemistry. We mix like oil and frozen yogurt”.

    Take care

    Pascale

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  17. Hi Tom:
    Another update full of LIFE! You are just doing an amazing job! Dad on the couch – well that’s Dad regenerating; preparing to go into battle. And those beautiful little people in your life, they know you’re just replenishing your super powers! Every day I root for you and pray. To LIFE! 🙂

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