Caring for a Three Legged Dog or Cat
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Thanks Sally and Jerry. The backup plan is to do a full regimen of DOX. She’s already done one, and has her second next week.
Right now, I’m still leaning towards the original plan of doing the two chemo treatments and then the ELIAS immunotherapy. It was disappointing hearing what ELIAS told me yesterday, but i have to think that the woman telling me that was being cautious. It would be really helpful to be able to see the study myself.
I am going to consult with the oncologist again next week. What she told me the last time that we spoke about was this, she’s used the vaccine on 45 patients, and “I’ve had more dogs have long term survival than in any time in my career. But I’ve also had more kiddos die sooner”.
Out if the 45 patients she’s had none until Ophelia have done any chemo prior to beginning the vaccine. The surgical oncologist told me that ELIAS recently advised them to “tweak” treatment by adding a little chemo during the time between amputation and the time that the vaccine is ready to be used. Dr Fowler told me that she believes that the reason that “kiddos” who she’s not survive as long is that for whatever reason the cancer has some time to multiply or grab hold (not her exact words) during the time between amputation and the beginning of the immunotherapy. Her hope is that by adding the two chemo treatments during that interim period of time that this can be prevented.
Maybe that is also why ELIAS has advised them to tweak the treatment by adding the chemo? Who knows?
I’ve never been a person to accept unwinnable situations and that’s what the chemotherapy options seems to be. It’s putting off cancer ultimately winning.
Even though it may still be a long shot, the ELIAS vaccine has had some success in eradicating the cancer altogether. One dog in the pilot study got the vaccine, but then developed metastasis. The owner stopped participating in the study. A few months after the study was complete the university of Missouri reached out and learned that that dog was still alive. They brought him in, and the mass that has metastasized into his lungs was completely gone. They theorize that the vaccine continued to work and actually destroyed it.
A few other dogs lived past two years, and a couple were still alive at the time that the study was published.
This is why it was shocking to hear what ELIAS told me yesterday. But again, maybe she was being overly cautious because they’re not allowed to reveal the results until the study/paper is approved.
Or maybe I’m letting my optimism, hope, and refusal to accept that cancer will win, color my decision making process and hurting Ophelia by making the wrong choice.
So this leaves me with deciding between what is known (chemo), but doesnt guarantee even the average survival of less than a year, or using Ophelia as a test subject with the hope that my gamble works and she lives a full life.
Economically, the decision would be easy. Go with the chemo. Insurance will pay for 90% of it. They probably wont pay a dime of the immunotherapy. But this doesn’t matter to me. What i decide only has to do with what is best for Ophelia.
I’ve never had so much internal pressure with anything to make the right decision as i do right now with this.
@Eustacia - you can’t do a full regimen of chemo because chemo suppresses the immune system. It’s why Ophelia ended up with sepsis after her first chemo session. The ELIAS vaccine requires a robust immune response. So chemo can only be done during that span of time between amputation and the vaccine preparation. The vaccine doesn’t have a long enough shelf life to try and fit in even three chemo treatments. (I asked).
Sorry for the long, rambling, post. It helps me to write out my thinking process so i think that’s what I’m doing here today. Like journaling, I guess.
And Jerry, you asked me which way my heart is telling me to go and i forgot to answer that. It’s difficult to know really. I want to be sure that whatever decision that i make isn’t made out of selfishness of not wanting to ever let go of her, and is instead made for what is best for I HER life.
When i read your question, i posed another one to myself. If i contracted cancer and knew that treatment option 1 would mean that there was an 80% chance that i would die within a year, but that option 2 might not even work THAT well because it doesn’t have the same long track record as option 1, but also that option 2 had the chance of allowing me to live out my full life IF it worked well, what would i choose for myself? I would choose option 2. I’d want to give myself a chance of living out my full life. Does it really matter to me in the big picture if i am dead three months from now or 12 months from now?
i know that that’s dark thinking, but I’m just being honest about my thought process.
I still take the award for rambling posts! This is a tough one, but I think you may have answered your own question at the end. That having been said it’s my understanding 20 percent of dogs do live past (some well past) that one year mark just with amputation/chemo? At least that’s what one of the radiation oncologists told me yesterday. So maybe that was why ELIAS said their results were comparable to chemo? I know what it feels like to be facing what seems like impossible decisions. One oncologist told me today that the reality is no one really knows the answer to a lot of questions I’m asking and she doesn’t think anyone should have given me stats because people use different sources for their stats and no one is ever going to give me the same numbers. I think the story of that one dog whose cancer in the lungs disappeared is pretty miraculous. I don’t think that’s ever happened with chemo? I would think there should be some more in depth data ELIAS could share with you if you’re paying that much money for their vaccine? It’s not like this is a trial study where you are getting it for free.
I had another thought which is, if you have any remaining thoughts of doing the remaining 4 chemo sessions instead, please make sure the chemo shortage going on is not affecting the supply of the place you go to! I would hate for you to pass on the ELIAS vaccine then find out they don’t have the preferred chemo agent even available. I know the place I plan to do chemo at was ok (at the time) but I did see a post yesterday on one of the facebook groups I’m on for dogs with bone cancer that someone wasn’t able to get carboplatin for his dog due to the shortage. 🙁
Michael said
Sorry for the long, rambling, post. It helps me to write out my thinking process so i think that’s what I’m doing here today. Like journaling, I guess.And Jerry, you asked me which way my heart is telling me to go and i forgot to answer that. It’s difficult to know really. I want to be sure that whatever decision that i make isn’t made out of selfishness of not wanting to ever let go of her, and is instead made for what is best for I HER life.
When i read your question, i posed another one to myself. If i contracted cancer and knew that treatment option 1 would mean that there was an 80% chance that i would die within a year, but that option 2 might not even work THAT well because it doesn’t have the same long track record as option 1, but also that option 2 had the chance of allowing me to live out my full life IF it worked well, what would i choose for myself? I would choose option 2. I’d want to give myself a chance of living out my full life. Does it really matter to me in the big picture if i am dead three months from now or 12 months from now?
i know that that’s dark thinking, but I’m just being honest about my thought process.
You can ramble away, that's why we are here! NO worries and no need to apologize for your thinking process, OK? You have enough stress going on. We get it.
And I agree, you answered your own question. Good process!
Michael,
I related to your "long rambling post" so much! Having a plethora of resources is so wonderful, but it is also so incredibly overwhelming. Especially in the current state of osteosarcoma treatment for dogs where, yes, there's a standard protocol, but it leaves a lot to be desired, but all the other more desirable options are still in varying stages of study and none are completely vetted.
FWIW- CSU didn't even mention the ELIAS vaccine to me as a possible treatment, which in hindsight was kind of surprising to me. Maybe it's because I was working with the clinical trial side of things and was leaning of going that route. I did my own research on the the vaccine, but it was already after Ellie's amputation so a moot point. Anyway, my point being, they might not have a in depth opinion on it either way. I have asked for their opinions on the MIMIC trial and they were not familiar with it (granted it's much much smaller than the ELIAS vaccine right now), they did review the documentation I sent them, but I got a pretty noncommittal answer of, and I'm paraphrasing, it's looks really cool, but I would have reservations since it's not thoroughly studied. I wouldn't be surprised if you got a similar answer to their opinion on the ELIAS vaccine.
So, if I'm mirroring back to you what I'm hearing is that you have pretty much decided on the ELIAS vaccine, but looking for added confirmation that it's the best move. I highly doubt you're going to get that confirmation from a consult with CSU, they have always been by the numbers and upfront with the unknowns and varied possibilities of the disease. I, personally, would stay the course.
Ophelia is doing great and is lucky to have your caring guidance.
PS- I'm obsessed with Ophelia's face when she walks, all those skin folds going up and down it's so precious! Such a sweet girl!
Whitney said
So, if I'm mirroring back to you what I'm hearing is that you have pretty much decided on the ELIAS vaccine, but looking for added confirmation that it's the best move. I highly doubt you're going to get that confirmation from a consult with CSU, they have always been by the numbers and upfront with the unknowns and varied possibilities of the disease. I, personally, would stay the course.
I'll second that viewpoint that CSU won't give out an opinion on it either way. Thank you for saying it so well!
Sorry I’ve been MIA for several days. First, thanks for your answers re my appointment with CSU. Particularly Whitney’s. That was very helpful.
Ophelia is doing great. I’ll share some videos below. But I’ve been pretty down about all of this tbh. I had to go back to work last week and am woefully behind, so that isn’t helping. But i can’t stop thinking and worrying about the cancer metastasizing, which seems to be an inevitability from what everyone says and from all of the literature. For example, saw a lump in Ophelia’s mouth a few days prior to her chemo treatment last week and worried about it for days before the doctor could look at it. It is fine. Now, i felt a weird nodule on her back leg that has me worried. I doubt that it’s anything but my point in putting this down is to explain how i am just constantly worried about her. It’s like a foreboding feeling.
i am also still unsettled with her treatment. I had a very frank conversation with her oncologist while Ophelia was being infused last week. I told her that my problem with the ELIAS vaccine is that there isn’t enough information. I’m not talking about statistics on survival. I’m talking about the science itself.
I read everything. For example, I’ve read everything that there is to read about the Yale vaccine and feel that i understand how it works. But because ELIAS’s process is patented, that same information isn’t available for me to read about. Ophelia’s oncologist was kind and heard me out. I know that I’m being like some of my clients who research and then second guess my expertise. So i feel badly about that. But she can’t tell me how ELIAS works either. Other than the basics of course.
So it comes down to giving in to faith. Faith that the people working on these treatments are doing it for the right reasons and that it’s not all about the financial incentive. I question why the most recent ELIAS study is over six months late in being published. The oncologist told me that that is common with scientific studies like this. She said that she believes in the science of ELIAS and has more faith in it than the other vaccines out there. Shes used it to treat 48 dogs and none of them had chemo treatments prior to like Ophelia is doing. So i have no choice but to just have faith. Like i told her, I’m having to come to grips with the fact that there is no *right* answer and no matter what i do, there is a chance that I’ll be second guessing myself.
I did talk the oncologist into doing three chemo treatments prior to the vaccine rather than just two as originally planned. We are able to fit it in since we did the first chemo treatment the day after amputation. So there is time to spare with the shelf life of the vaccine.
Anyway, that explains why I’ve been away. It’s not Ophelia who is doing poorly with this, it’s me. I don’t get down about it in front of her btw. I put on my cheery face and voice. Lol.
Here are some videos of Ophelia’s trip to the park today. It’s the first time that she’s been back since her amputation.
I’m having to come to grips with the fact that there is no *right* answer and no matter what i do, there is a chance that I’ll be second guessing myself.
Hi Micheal, I feel you. The thing is, I get the sense that no matter how much we know or don't know, how many options we have or don't have I don't think there's any getting away from the uneasiness of knowing we will eventually lose these dear ones in one way or another at some unknown point.
And in the words of @Whitney in a thread where I was having related thoughts, but from a different angle:
Regardless of how much you read/study/decide you need to treasure this time with your pup, because you simply don't know how long you get. That's the crappiest part, that I think leads to a lot of the what ifs.
Enjoy that big ol' furball and hold her close - everything else is details. Sending you and Ophelia my best -
Natalie & Juno (aka June)
Hey Michael, good to hear from you. And really good to see Ophelia doing so well. I love all the videos and watching her get back to the park. She had a blast! What a way to cool off and enjoy a lazy day together!
It's so hard to be confronted with this disease, and all the realities and possibilities that come with it. We want to control so much about life and its effects on our loved ones. When faced with cancer, we realize there is so much we cannot control, and this reality just suuuuucks. Our minds go round and round and there's no way to win that battle within us. All we can do is make peace with this reality.
One way I cope in tough situations like this is through daily meditation. If you've never tried it, I highly recommend dipping a toe in with a guide like the Calm or Headspace apps. Even just a few minutes a day can help ease the "monkey mind" within us.
Cancer and the realities involved with it are a difficult thing to wrap our minds and hearts around.
Thank goodness there's Ophelia to show you what really matters, right?! In that first video of her watching and listening, she is giving you guidance. "Hey Dad, I know you're worried, but I'm still here. Can we go have fun now?"
So good to see how well Ophelia is getting around! and what a nice place to swim. I've come to the conclusion that there is nothing to be done about cancer but to try our best on faith. There's a lot we can do to make post op the best life possible for our dogs, though, and you're doing it!
I can completely identify with the sense of unease, the worrying, and second guessing decisions. I feel like there is some formula out there that would give me the most good quality time with him but I will pick the wrong thing and forever torment myself with “what ifs”. Also, try my best to be upbeat and calm around him but I lay in bed at night with thoughts spiraling.
You said you understand how the Yale vaccine works. I don’t. Am I foolish not to do the 26 hour round trip drive (twice) to get it? Is the data strong? Ugh.
Orphelia looks so happy! I love the video of her running at the park. I feel like you have done everything (and then some) to give her more quality time with you. Working in the 3 chemo treatments was brilliant and should ease your mind. Many only even do 4. I think the ELIAS vaccine surely must have more benefit than one remaining chemo session.
Sorry this is off topic Michael. But by the way, I totally understand about work! I've postponed large projects because all I really think about is Nicholas. So I just do little routine entry data things that don't take much thought and can be interrupted!
Hi Eustacia, If you are even thinking about Yale at all, it might be best to schedule your appointment now and then you can always break it. IMO you won't be doing anyone harm by breaking a Yale appointment, as I understand it the West Coast at least is very backed up. Eastern Washington (not BARC/Seattle which we used) does the Yale vaccine in conjunction with radiation, so maybe other clinics nearer you do also.
Yale recommends the vaccine as an addition to "standard of care", since it is directed at the mets, and it requires a confirmed report from an oncologist of osteosarcoma (or some other cancers, I forgot) . It allows chemo in conjuction with the vaccine (I double checked when I was up there recently). I don't understand the science well either, but the effect on the dog's quality of life is minimal, they are very honest about their study reports and the limitations of what they can predict, they have studied over 600 dogs, and, because it's associated with Yale, they are not completely flakey. That's a non scientist's evaluation, so you'd better listen to Michael!
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