Positive Sign or False Hope? Time Will Tell…

So this is what GOING OFF-ROADING – EXPERIMENTAL TREATMENT STRATEGY STYLE feels like…

What an interesting couple of weeks I have had since my last medical update (link above)!  “Interesting” is a well… an interesting word isn’t it?  It doesn’t have positive or negative connotations… it is just what it is… interesting. Some sort of brew of the unexpected that can be good or bad depending on the circumstance.

My brew was either good or bad, depending on your viewpoint.  From my viewpoint I took it as a clearly good form of the unexpected.  Whether or not that viewpoint was the product of false hope or a truly positive sign – only time will tell… From another person’s point of view (see below) it would normally be taken as a bad sign…

2017-09_Doctor confused unsure

Atezolizumab (anti-PDL1 immunotherapy) + FOLFIRI (Chemotherapy) + Avastin (biological anti-VEGF therapy) Infusion #1

My choice of the above witch’s brew of therapies was explained in the previous “Going Off-Roading” post and I stick by it.  Each component has an important role to play both medically as well as scientifically to try to synergistically maximize the chances of a successful immunological response.  Logistics & realism also played important roles in treatment design.

What happened while I was infused with the above concoction? Nothing. Well nothing beyond the standard FOLFIRI infusion.  Some acute nausea – but aside from that, the atezo immunotherapy infusion (everyone uses that abbreviation because the drug name is both impossible to say and spell – why do they have to do that?!?) might as well as have been water.  I went home & went to bed at about 7 PM.  But then something happened… aside from 3-4 one-hour respites, I slept for the next 24 hours straight!  Now that was interesting.  That had never happened in an infusion before taking atezo!  Like a dutiful scientist, I started up a scientific lab notebook to fully & accurately record the detailed side effects.  I saw this as part of going off-roading in my treatment, partially for my own safety sake.

The second day after infusion (the day after the one I lost to continuous sleep) something even more interesting happened.  I woke up that day to intense pain (about an 8-9 on the pain scale).  Opiates did nothing to stop it.  It was just as bad as when I was bedridden with pain last spring due to intense pain in my lymph node tumor mass.  Now the interesting part: It was localized to the only the lymph node tumor mass portion of my lower back… nowhere else.  Keep in mind that SBRT radiation has dramatically reduced my lower back pain – down to a “1-2” – but the SBRT left 20% of the tumor mass in place.  Small enough to not cause any significant pain but some of it is still there…

There was intense pain – localized only to that 20% remaining lymph node tumor mass – now THAT was very scientifically interesting!  I dutifully wrote all of this down in my side effect journal…

This is the part where a “normal” person would take this very interesting intense pain side effect as bad…  but as a scientist I took it as good.  Why?  I talk to & observe >1000 Stage IV CRC patients on a regular basis. Of those CRC patients, about 5% of the Stage IV patients are “MSI-high”.  This subset of CRC patients tend to respond well to immunotherapies such as Atezolizumab.  What have many of them said to me either 1-on-1 or openly on the patient message boards?  Many report localized pain at tumor sites when they first start taking a PD(L)1 inhibitor immunotherapy.  Many of these patients successfully respond to immunotherapies. Now, I don’t think this has been proven yet but these patients (and via logic me) believe that this pain is a good sign – the pain indicating successful activation of the immune system localized to tumor sites with the resultant inflammation and/or tumor cell infiltration/swelling causing pain.

I was a mixture of thrilled and a bit scared (the pain was 8-9!) but the pain subsided at about the 24 hour mark and at that point settled down to a much more tolerable 3-4 on the pain scale.  Over the ensuing two weeks of the treatment cycle, it actually returned to the pre-treatment pain level of ~1-2, once again indicating a potential drug-induced pain cause, with the pain being reduced as the drug was cleared from the body to levels too low to cause it.  Once again, this pain time-course matched what I heard from a number of MSI-high CRC patients. I kept close track of my side-effects in my “lab notebook” – The ultimate scientific experiment indeed!

The next two weeks passed without event and I went in for infusion #2.

Infusion #2

Once again the infusion itself went on without noticeable effects.  The next day?  I was very tired (much more than normal) but… I did not sleep 20/24 hours this time.  The second day?  I had a noticeable increase in pain (this time localized to tumor sites both in my lymph node mass (causing lower back pain) as well as chest/lung pain – BUT the pain was not as intense as infusion #1 – it increased to only about 5-6 on the pain scale.  Once again, after about 24 hours it began to subside, matching an effect seen in some MSI-high CRC patients. MSI-high patients? Many of them have told me that the intensity of pain decreases with each PD(L)1 inhibitor infusion – so once again I was matching the pattern seen in some MSI-high patients – patients who respond to immunotherapies.  As an observational scientist, I was thrilled!

'In a sentence or two, Gibbs.'

So where do things stand now?

I get my next PET-CT scan in October after getting Atezo/FOLFIRI/Avastin infusions every other week for about two months.  I got a “baseline scan” to compare that scan against to gauge whether this off-roading experimental treatment was working or not.  That recent baseline scan showed some tumors were stable as well as some tumors which were growing and there was a new tumor on my kidney. 

As a scientist I am absolutely thrilled right now by what I am observing since it matches a scientific hypothesis that my clinical signs point toward the possibility that the new therapy is working.  Of course this is all dependent on me not messing up the hypothesis by any placebo effect but I think that is relatively unlikely since at least that first infusion pain was intense!  But the body and brain are both very complicated… so we’ll just have to see what the scan shows.  There is also the chance of “pseudo progression” in this first October scan if tumors get inflamed and infiltrated by immune cells but since radiologists are on the look-out for that now days, the possibility of this giving a false impression of therapy failure is lower than it used to be.

So this is what GOING OFF-ROADING – EXPERIMENTAL TREATMENT STRATEGY STYLE feels like… welcome to the wild world of Stage IV Cancer…

To Life!

-Tom

 

32 Comments on “Positive Sign or False Hope? Time Will Tell…

  1. Dang ya! Lower-back warfare! I’d absolutely go with the immune-inflamation response. Details matter and glad that you can observe those transitional details with your researchers lens. This gives us all hope and a bit of a roadmap for the path ahead. Thanks!

    Liked by 1 person

  2. Hi Tom,
    So happy to read your new post, it has been a while and I have been worried about how you were doing. Hopefully the pain is a good sign of response. Wishing you the best. Please keep on updating us.
    Farah

    Liked by 1 person

  3. Hello Tom,

    Every time I follow your advice to “Scroll Down Past The Big Trees” in order to read your last post,I can see your tiny image with your hands on your waist as if you were waiting. There is still a very small river near by, and those beautiful trees are surrounding you in a protective attitude.
    On the contrary, on the picture “Uncharted Territory”, a man is wallking on a sandy path of a desert. No sound of water, no huge trees, this man is just walking ahead. Those two pictures are the expression of you as a scientist on duty sticking to his works and a patient undergoing intense treatments. Waiting, walking, thinking and feeling.

    You ask yourself the question how did my body and mind react to treatement, both on a scientific and personal point of view, but to me,Tom, the act of writing in jour lab notebook, on jour blog, or on any other place, is a truly positive sign.

    So thank you for writing.

    Pascale

    Liked by 1 person

  4. So sorry you had to endure that horrible pain, but very interesting knowing where it was coming from…stay strong!!!!!!!!……my husband and I have been enjoying the posts about “Blink”……so cute!!!!!

    Liked by 1 person

  5. Tom,

    we cherish the day we found your blog and made contact with you. You selflessly serve humanity and individuals like us, caught in the maelstrom of the cancer storm. Our hopes and prayers are that your experiment will not only stay ‘interesting’, but will also have a really positive outcome for you and your family soon.

    Make sure you don’t forget to care for “Tom”, you are too precious to your family and humanity to take for granted. Hayley knows how truly challenging it is to get through the veil of pain and hopes you are getting the best support available.

    To life!
    Jim & Hayley
    xx

    Liked by 1 person

  6. Hi Tom.
    My name is Bob I am also fighting colorectal cancer stage III now stage 4. 50-year-old and I had no symptoms of it myself. I did six months of chemo. Folfiri fu5. Then six weeks of radiation with chemo pills. Had my rectum removed. Then in December I was rediagnosed again with three tumors on me. In my anus area pelvic area try to treatment from January to March did not work with on a clinical study from April to August and has decided to stop working I just found out two weeks ago my tumors have some growth The Clinical Study was a PDI 001 with everolimum. I don’t understand how something works for four months and decides not to work anymore but I guess that’s the life of a cancer cell. I see you you’re doing a study of the charts I was wondering if you back something that might work for me I have krass her2. Thk bob.

    Like

    • Hi Bob,

      Sorry to hear about your diagnosis and various treatments that have not worked. I highly recommend you join the COLONTOWN clinical trials group I help run on Facebook (just friend me & PM on Facebook to start) – and using the Fight CRC curated trial finder, keyword search for “HER2” there are a number of trials showing promise for HER2 amplified CRC. http://trialfinder.fightcrc.org/ Best of luck- Tom

      Like

    • Bob, I also have a Her2 crc. I have been dealing with stage 4. You can contact me by contacting Tom- he has my personal email. Been on a few things that temporary worked for her2.

      Like

  7. Hello Tom
    I did forget my last comment that I just posted I love your blog in your all your wonderful information my sister end up finding you on line and sent it over to me I think it’s really awesome somebody that’s in the medical industry/scientist can Can work with the whole cancer situation. And give information out there as well I’ve spoken to my oncologist about your website with some clinical trials needless to say I don’t know what they will do Bob k

    Liked by 2 people

  8. Two specific questions:

    1. What is the average circulating tumor cell number in people’s blood? Mine is 6.7 after removing my tumor and having 5 months of chemo with a diagnoses of Stage 3C.

    2. Has anyone out there had Dendretric Cell Therapy? I’m going through the process to begin this at an alternative medicine facility.

    Like

      • send me an email Tom if we can discuss further with one another.

        I would think that you would have heard of or gone through dendretic cell therapy as another immunology tactic to lower your CTC’s and reduce the size of your tumors. I’m hopeful of its response.

        Another thing to share is that I did a cell test to see what chemicals and substances were best to fight my specific cancer cells through a local health provider who uses: http://www.rgcc-genlab.com

        Specific test undergone:

        https://rgcc-group.com/assets/PDF/Leaflets/R&D/Personalized.Cancer.Testing/Personalized%20cancer%20testing%20-%20Global%20(R.G.C.C.%20Group).pdf

        When I asked my personal oncologist about it, he told me that I was “ahead of the curve” and the individualized immunological tests were the next frontier in medicine versus the what occurs now. I asked why he didn’t suggest when I first began the “standardized treatment” and he said that the drug and insurance companies have been slow to make headway on this. I further asked him that based on my CTC’s if he could recommend other forms of therapy to assist and he stated, “I can’t provide further treatment options unless we see further tumors in a scan”. So despite knowing my CTC’s are nearly 3 times the normal person, he can’t do anything without seeing a tumor. Basically, let’s wait to see a tumor form and then we fight it despite having this information now. I was very frustrated to say the least.

        On Mon, Sep 11, 2017 at 11:10 AM, AdventuresInLivingTerminallyOptimistic wrote:

        > marsilje commented: “Hi Jeff, Unfortunately I don’t know the answers to > your questions – best of luck- Tom” >

        Like

  9. Hello all, good afternoon. New to this blog, it will take a few more reads to get caught up and follow your journey Tom. However I can already tell there is a lot to learn from you and the group. Specifically seeking options. Currently at Stg 4, PC CRC plus mets to ovaries. 2nd recurrence. Now recommended for starting a 3rd round of chemo in the past 2.5yrs. This time 5fu with oxaliplatin and adding Avastin. Goal is to shrink tumors before surgery. This will only be 4 to 5 treatments. Surgery to follow will likely include hipec.

    Help! we already went through this including hipec 16 months ago. The only difference being Avastin.

    Looking for diet guidance, and treatment options. My wife is a fighter, she is positive, we’ve followed all recommendations, but the latest just seems to be more of the same. Initial diagnosis. MSS CRC KRAS mutation Stage 3cN2. 1st recurrence 10 months after initial surgery was located in peritoneum (2 very small tumors). Now latest recurrence has much more peritoneal involvement along with Ovaries and Uterus.

    God Bless.

    Like

    • I just finished watching module 3 of Chris beat cancer. https://squareone.chrisbeatcancer.com/anticancerdiet3
      He covers some very good diet ideas. I feel you need to use every weapon in the arsenal to fight this. Currently my husband is doing oral chemo, natural remedies and watching diet. I am sure I won’t be able to convince him to cut out meat and dairy, and I believe he needs protein as he is still very physical and working long days. His oncologist has mentioned several times how well he handles the chemo, he has been on several and we are running out of options. He is 51, looks good, feels good, so keep hoping for a miracle for everyone fighting this fight! Best of luck! I love hearing success stories!!

      Like

  10. Tom – God bless you for your wisdom, your perseverance, and your willingness to share this incredible journey. You remain in my prayers. Fr. Jim and I are here for anything you might need. If you’d like us to bring a little church to you, we can do that. Peace and blessings, Joe

    On Sun, Sep 10, 2017 at 9:38 PM, AdventuresInLivingTerminallyOptimistic wrote:

    > marsilje posted: “So this is what GOING OFF-ROADING – EXPERIMENTAL > TREATMENT STRATEGY STYLE feels like… What an interesting couple of weeks I > have had since my last medical update (link above)! “Interesting” is a > well… an interesting word isn’t it? It doesn’t have posit” >

    Liked by 1 person

  11. Oh, man! Sometimes I end up on the edge of my seat reading through your roller-coaster ride, Tom! But I sure do look forward to your updates, as I find them to be very very very inspiring. Hoping and praying that great great great news comes your way in October. God Bless.

    Like

  12. Hi Tom.

    I am glad you are having a response that can be seen as positive.

    Can you please tell me why you chose not to go with the Maraviroc that you discussed previously? I have been researching this and I am currently trying to work with my sister in law’s Oncologist to get him to prescribe it to her. She is stage IV and MSS so has few options, as you know. She is getting pounded with Folfox right now but i believe she is short on time for a strong counter strike on her liver involvement.

    You seemed all set to go with the Maraviroc but did not. Is there something about the drug which makes you think it is not worth trying?

    Thank you.
    Greg Scott
    Gscott@cfl.rr.com

    Like

    • Hi Greg,

      I don’t write every detail into my blog since I only write a post every 3 weeks or so. To follow me more closely, friend me on Facebook which is updated with what I am doing much more frequently.

      I did end up taking maraviroc up until I started this current Atezo protocol. Since there is no comparator all I can say is: There were no side effects. Whether or not it helped efficacy I can not say one way or another.

      I suspended taking maraviroc on top of the regimen written about in this blog because for safety ske I didn’t want to take too many experimental combinations at once. Scientifically there is a plausible chance for synergism, so this was purely a personal decision based upon unknown safety/dosage etc.

      Cheers,
      Tom

      Like

  13. A false hope is one based on denial, so yours is definitely not false at all. I’ve associated every good response I’ve ever had with an unpleasant number of side-effects. I once met a man who had almost no reaction to IL-2. I knew a woman who had only a mild reaction to cis-platen. That sounds wonderful to anyone who’s had the pleasure of such a medications, but they didn’t respond either. A walk through hell is a but a stroll in the park if it takes you somewhere better. Your multimodal approach is based on very sound judgment. I feel utterly certain that one day we’ll be able to figure the right combination for each patient based on the unique characteristics an individual’s mutant zombies take on as they continue making so many mistakes in a process most folks take for granted as never-fail. Best of luck to you as you blaze a new trail for all of us to follow.

    Liked by 1 person

  14. Tom, I hope your experiment works out well with success. I am on my own drug experiment for Her2 crc with braf amplification. I am doing tykerb, Herceptin and mekinist. Will see what happens. Everywhere I go I get told how rare this cancer is.

    I too, got a new puppy- back in April. Definitely agree- animals are the positive and joy in a household dealing with cancer. Last year I got a kitten.

    Like

  15. Hi Tom,

    I was very happy to find your blog after reading your posts on Colon Club. I hope your new regimen is as successful as it sounds. I also want to thank you for sharing your story with us. I was diagnosed Stage IV CRC with liver mets on 12/16 and did two sessions of Folfox in Jan and March 2017 but side effects were too toxic to continue. I just got my results from UCSF 500 and learned that I have no mutations I am currently on Cetuximab and Irinotecan with positive results. I hope next generation EFGR therapies will be developed for those of us KRAS wild who can benefit from them.

    I am an eternal optimist so I practice positive thinking even when things were tougher than imaginable! I send good vibes and prayers to you and will follow your “adventure” with interest and great hope for all of us!

    Like

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