Looking Backward, Looking Forward

I wanted to give an update – both in how things have been going and also what my next plans are (hint: I have to arrive at the hospital for a surgical biopsy at 6:30 AM today!)

Thrive

Looking Backward

Compared to last winter and spring (OK, compared to last month!), I find it hard to accurately describe how much things have turned around, how good things are going relative to before and the mental & emotional impact this has had on me! Last winter and spring was bad, really quite bad. I was largely bed-ridden with pain that couldn’t be fully controlled with strong opiates, standing up for more than a minute or so brought pain, I couldn’t walk in a single try further than about the distance from my bedroom to the living room. Unable to drive, unable to stand/walk in a meaningful of a way… I stopped leaving the house aside from medical appointments. Mentally/emotionally this was horrible. Physically I can’t imagine it was that great for me either.

Then the big turn-around! Things improved steadily – almost on a daily basis! It started in late May when my pain steadily went down to zero (with the help of opiates) due to my SBRT radiation treatment. Then I had my June 1st Y90-SIRT treatment to half of my liver and almost immediately afterwards, symptom relief accelerated. My appetite came roaring back (I have even gained a few pounds – very necessary!). My fatigue and malaise went down. I started to get out of bed more and more frequently and spent more time in the living room. This may seem like a minor achievement but for me it was actually a big deal! I started to leave the house again, eventually making it a point to get out at least once a day, every day – even if it took creative finding of errands in need of doing! I sat at the dinner table for a dinner with the family. I went to a restaurant meal. I started going for neighborhood walks. I went to a movie. I felt like I had rejoined the human race and American society! Mentally/emotionally this was great. Physically I imagine it was pretty good for me too. The only symptom I am currently feeling is intermittent nausea – but that is very tolerable compared to what I have faced before! Oh and side effects from chemo – but since it is currently keeping me alive, I’ll give it a pass!

A Way to Help Thrive

I had an oncologist appointment this week. In summary, he is *amazed* at how well I am doing! He also was VERY surprised that I had tolerated the harshness of my recent treatments so well (SBRT radiation, Y90-SIRT, FOLFIRI+Erbitux all on top of each other without any dose spacing – something he doesn’t normally do). He admitted that going into these treatments that he thought I maybe had a 20% chance of tolerating doing all of these treatments at once. When he saw that I not only tolerated them BUT also was thriving – he was really surprised! Of course all of this is based on (good!) clinical signs – I’ll be getting a scan in 2 weeks to see what exactly my cancer is doing…

I have to admit that I have been somewhat surprised at well how well I have done. I haven’t mentioned it before but I believe that one activity I started doing this Spring that has really helped is weekly Reiki sessions that have been facilitated by The WunderGlo Foundation. The sessions are led by the Reiki Master & leader of the WunderGlo Reiki program Kevin Ackad and I believe they have given me the peace, strength and ability to both tolerate and thrive on my treatments way beyond what either I or my oncologist expected. I don’t believe I would be doing at all as well right now without them – I am a believer in the mind-body connection. A link to the WunderGlo Reiki program is here, thank you Becky (the President of WunderGlo) & Kevin!

Looking Forward

So I am feeling and doing a lot better – which in terms of quality of life is fantastic but I still have one big problem… wide-spread Stage IV CRC facing FOLFIRI-Erbitux chemo resistance and the end of standard of care/FDA-approved medicines with high response rates… Doh.

Being terminally optimistic, I expect my liver Y90-SIRT on my other lobe in August to be successful. This will temporarily stabilize my liver, allowing me to exit a multi-month crisis period and a return to the possibility of experimental therapies. So I need to start figuring out what therapies to have planned/on-hand once the SIRT is done.

Do I focus on clinical trials? Logistically can I do one that I really want to do? Do I focus on off-label/compassionate use strategies? If so, what therapies? How to make a rational decision?

innovate therapy -cartoon

A Sense of Rationality

This morning I am going in for a liver surgical biopsy. Because it is laparoscopic, even though I will be under general anesthesia, I expect to be home in the afternoon.

What am I looking for in the biopsy? This is where the experimental part comes into play. I am collecting a lot of tumor tissue & related stroma etc. to assay potential therapies ex vivo against my personal tumor. We are testing for activity from single agent or combinations; cytotoxins, targeted therapies, immunotherapies… a wide range of possibilities, not FDA-approved for CRC, trying to find therapies that my personal tumor appears to be sensitive towards. This is a huge advantage because I am out of high-response rate FDA-approved therapies. Having guidance of what to take next is an incredible advantage to facilitate rational decisions between options, all of which may look like reasonable things to try “on paper”! I am a big proponent of phenotypic data so I am very excited to generate and receive this data!

Overall I am in a good place right now. Looking backward I see a lot of recent success and improvements that make my life much nicer while I continue to tread water and generate plans for my next therapies. Looking forward, I am excited as both a patient and a scientist to generate and see phenotypic data on my own personal tumor. I think that is such a cool opportunity from and it could be an incredibly useful for to keep me alive as well. I like that combination! 🙂

To Life!
-Tom

Post-op update: Surgery looks like a success! I will know with more scientific certainty in the coming days…  I am currently in post-op, feeling fine, ready for home, feeling famished which I consider a very good sign! 💪💙💪

10 Comments on “Looking Backward, Looking Forward

  1. AMAZING!, frustratingly it usually takes a long time (to long) to experience and/or determine any positive results from treatments. Congrads!

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  2. Holy mackerel! I am always inspired by what you have to say, Tom. Pretty sure I said it before, but I just kinda feel like saying it again … it would be quite an honor to meet you some day. And my hope is that day is a long long long long long time from now! Peace.

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  3. I’m so glad you are in a good place! Thank you for your update and inspiration!

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  4. You always inspire me to carry on. God bless you. You are always in my prayers. Although we struggle with different Stage 4 cancers, I draw hope from your experiences.
    As for me, my clinical trial (so far) is working. I am a walking miracle. (stage 4 ovarian cancer-dx June 2013, metastasized to breast Oct 2015, evolved into super rare fungating & ulcerating tumor in March 2017) My trial ends in August, and my tumor will quickly return after that, if I don’t find a new treatment plan. My doctor won’t discuss the future plans this early, so I draw inspiration from your ability to research and always have new treatment plans lined up or in mind.
    I pray that you and your family have some peace in your lives, and I will continue to pray that successful treatments come your way.
    -Julie

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    • Hi Julie, thank you for the kind note & congratulations on your successful trial! One thing I was surprised by is that most trials, for ethical reasons, have in the trial agreement that they will continue to supply drug at trial’s end for as long as it is still working in a patient. I think it is worth you going back to your signed consent & double-checking as well as contacting the trial PI & company sponsor. Best of luck! -Tom

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  5. Stay in that good place for a long long time

    Always praying for you and all our folks

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  6. Of course YOU are always amazing. One of the most inspiring human beings ever. This is such wonderful news you’ve shared. I will pray for clear thinking and wise decision making for you going forward. The science alone will of course intrigue and engage you, and it could prove invaluable in providing a helpful therapy! Always always, wishing you the best.

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  7. Wonderful newsI I have been so hoping for a good update, and here it is today! My son hopes to be scheduled for Y90 this next week. He had both lobes done a year ago, but had mixed results. Keeping fingers crossed that this, with different doctor, hospital, etc. will be more successful. Our options are very limited now, after 16 months of aggressive chemo. Your blogs are invaluable. I cannot thank you enough for sharing your journey through your optimistic, scientically-trained insights and discoveries. To Life!

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  8. KEEPING YOU IN MY THOUGHTS AND PRAYERS,

    new follower, Cushing, Oklahoma

    ;-PB

    Like

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