A call to arms

So I’ve been enjoying just taking chemo pills in the hopes that they will do the same damage to the cancer as infusions; my recent CT scan, unfortunately, has shown otherwise. The cancer is advancing (slowly) but it’s taking a toll on my quality of life already, as I struggle with a bloated abdomen and severe edema in my legs, ankles and feet. I met with my oncologist today and he has a sense of urgency for finding an alternative procedure that will help me more than just reverting me back to what I’ve been doing since the beginning: several IV bags of chemo, with the pump, etc. It’s incredibly inconvenient and the results are expected to be less than before, since I’m a bit weaker and might not be able to handle full doses. Plus, it does nothing to the cancer but beat it back for a bit.

So to all who have offered help, I’m here to ask for it now. I need some help with searching for clinical trials that might help me.

I don’t have a lot of criteria to search with, other than describing what I have and looking for trials that address it: Stage 4 colorectal cancer with metastases in my liver. I’m willing to travel anywhere in the US or even canada i suppose, i don’t want geography to impact my search results too much. If i’m lucky I might land a trial where you live (and then you can enjoy my company in person, woo-hoo)!

If you do search, please feel free to send me anything that looks remotely interesting, I can forward to my oncologist and let him make the call whether it’s a viable study or not.

Here’s the catch: I only have about a week to look, and then I need to get back on IV chemo if I don’t come up with anything. Please feel free to email me directly at eschuttler at gmail.com with URLs.

Here’s a few resources where i need to search, but I’m open to other cancer centers you might know of that holds clinical trials:

https://www.mskcc.org/why-choose-msk

https://www.mdanderson.org/

https://www.cancer.org/treatment/treatments-and-side-effects/clinical-trials/what-you-need-to-know/picking-a-clinical-trial.html

Time is of the essence — I love you and thank you for your continued support. Now’s your chance to help me kill this crap. Please help with a couple hours of your time, if you can, between now and July 21st or 22nd.

thank you, thank you, thank you…

19 thoughts on “A call to arms”

  1. Hi Eric,

    I will start researching tonite. I’ve known a couple of people who have dealt with this type of cancer successfully (they are not local) and will reach out to them as well. Hang in there & don’t lose hope!!! You are in my prayers nightly.

    April

  2. Eric, we’re all over it too. Got a few friends here in Seattle to tap for info.

    In the meantime, if any of your other research points you at Seattle, know you’ve got a place to stay. University of Washington is ranked #5 in the country for cancer treatment/research.

  3. My cousin Jen just shared your blog with me. Sloan Ketterin in NYC is very good.If my insurance would have covered it both my husband who is battling prostate cancer and myself with rectal would have gone there. I am 48 as well with Stage 3 Rectal Cancer. I go to Roswell Park Cancer Institute in Buffalo, N.Y.. They do many clinical trials there. I see oncologist Dr. Boland and surgeon Dr. Nurkin. Praying for you and your family. If you ever want someone to talk to Jen has all my contact info.

  4. Eric,

    Here’s a list of what I’ve found so far. I have Matt checking too. Let us know if there’s anything more we can do.

    This one is a list of the clinical trials at MSK. You’d know better about your exact eligibility.
    https://www.mskcc.org/cancer-care/clinical-trials/search?keys=&disease=2172

    This one is at MD Anderson and is specific for colorectal cancer with liver metastases.
    https://www.mdanderson.org/patients-family/diagnosis-treatment/clinical-trials/clinical-trials-index/clinical-trials-detail.ID2015-0828.html

    I found this site that searches all the clinical trials. You can filter by type of treatment (eg. radiation, chemotherapy, etc.) as well as phase and location. It’s a long list because I didn’t know what filters to use. If you give me more specifics, I’m happy to run them through the filters to narrow the search for you.
    https://app2.emergingmed.com/emed/home

    Finally here is a list from the NIH. I searched for adult male colorectal with liver metastases.
    https://www.clinicaltrials.gov/ct2/results?term=liver+metastases&cond=Colorectal+Cancer&cntry=US&Search=Apply&recrs=a&age_v=&age=1&gndr=Male&type=&rslt=

    Sending lots of energy and positive thoughts that so many people looking will find a trial meant for you!
    Amy

  5. Brotha, have you considered integrative approaches? Dr. Leanna Standish has been at the forefront of integrative oncology for decades. Read more about her here:

    https://bastyrcenter.org/providers/leanna-j-standish-phd-nd-lac-fabno

    When traditional methods aren’t working, sometimes it’s worth considering alternatives. And remember, you have a place to stay here in Seattle. I live 15 minutes from this clinic. My sweetie lives 5 blocks away…

    I’m sure you know this, but there is always a risk of being placed in the control group (placebo) during a trial. So I’d encourage looking at other treatment options in addition to clinical trials.

  6. Hi Eric, StAlphonzo’s sweetie here. Chiming in to say I know Dr. Leanna Standish. In short, I’d trust her with my life. She’s brilliant, a deep listener, confident yet humble, curious, and very well-respected across disciplines (allopathic and holistic). And the NIH trusts her with their money.

  7. First of all, what we found out very quickly is that Seattle is maybe *the* center in cancer treatment research. It looks like you know a couple other people out here, but it goes without saying, mi casa es su casa if Seattle is your ultimate destination.
    Thea talked to some friends from Bastyr University, which is a holistic research school, which I think someone’s already mentioned to you. They are doing some research there, but there’s an application process. They also focus a lot on comfort, with acupuncture for example. More interesting, because pot is legal in Washington, there’s been more research into its benefits. There’s a cannabis specialist here name Jake Felice (206-795-6044) from the Naturopathic Pain Clinic who says that the treatments they use can actually be restorative and not just about symptoms.
    Also, there’s another doctor we know here named Chad Aschtgen with Seattle Integrative Oncology (http://seattlend.com/ ) who the people Thea talked to said is doing very exciting stuff.
    We also got some info on Seattle MD/ND FABMOs that I can send you if you want it. They also said there’s a repository for North Carolina FABMOs that you can get information from (919-932-6262 x 215)
    I got in touch with Fred Hutchinson/Cancer Care Alliance out here, which is the heavyweight in the traditional medical approach. I talked to a few people and left messages with their Gastro-Intestinal Research office (206-606-7551), but haven’t connected yet. Fred Hutch is really a national center for treatment research, so I hope to get you more from them soon.

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