Bill,

Thanks for sharing about Riley's experience with Elias. I'm glad to hear that he did so well with it! The setback with the foot infection sounds scary, but hopefully you are on the other side of it. I know he must appreciate all you're doing to keep him healthy!

I can empathize with dealing with his immobility. Helga has had pretty strong lethargy since she came home from apheresis. She had the infusion this past week, and it was a bit scary as she had a fever that lingered so had to spend an extra day at the hospital. Once I got home, she wouldn't budge from the car. I had to pick her up. Which is hard for me, and I hurt my arm. 

The lethargy has been pretty bad. The times I have gotten her up, I had to support a lot of her weight. Today she just refused to get up at all, and had potty accidents laying on the floor. With her meds, she is eating mild food and drinking ok. I did have to get probiotics to help with the diarrhea. 

I'm just counting down the days until this week's treatments are done. I hope she will regain her oomph after that. I'm not sure how things play out after that.  I feel like the apheresis and infusion/IL-2 have been the hardest parts on her, worse than the actual amputation. 

Sending healing thoughts out to Riley and hope you have a joyfu holiday!

An update and my personal opinion (based on observations) :

I'm heartbroken to share that my beloved Helga passed away on Monday December 18, 2023. 

To recap, she was a black lab approximately 10 years old. She was diagnosed with osteosarcoma on Labor Day weekend of 2023. Her symptoms were increasing lameness and swelling on her right foreleg.

As many of you know, it felt like a crushing blow, and the mad rush to absorb as much information on treatment options in a short period of time was very stressful. I decided to consult with one of the big veterinary hospitals in my area after reading about newer options like immunotherapy. After a thorough workup of tests and examinations, the oncology vet determined that Helga would be a good candidate for the Elias immunotherapy protocol. There were no lung mets observed, nothing apparent in the abdomen, blood work checked out.

I read everything I could about it, I read the information and disclaimers provided by the vet, I scoured my finances to figure out how to pay for the very expensive course of treatment. I felt like I was making an informed decision.

While not easy, Helga bounced back as well as possible from the amputation. We did 1 round of carboplatin before starting the Elias protocol, based on recommendations from the vet, which was well tolerated. We then did the 3 Elias vaccines, again no big reactions, mild lethargy for half a day or so.

Helga underwent the apheresis procedure, and this is when complications began. She required a blood transfusion during the process, but I was told she did well with all of that. However, I got a harrowing call the next morning stating the vet believed Helga had some kind of "vascular event" overnight, in which she was barely responsive. She improved enough that I was able to bring her home the next day. However, she was much more lethargic than from any of the prior treatments. She had several indoor potty accidents, very rare for her. She had not even had accidents after her surgery!

She slowly gained a little strength, but she needed much more assistance getting outside to potty than she had before. She wasn't moving around a lot in the house. The following week, I took her for the infusion step of the protocol. I was told a mild fever would be expected, and that she would be pre-treated with some meds to ward off the potential for a cytokine storm. She endured the procedure, but had a higher than expected fever. The next day, the fever persisted, and the vet wanted to keep her another day. The following day, she received the first dose of IL-2. She still had a fever, and she was too weak to stand without help. She was sent home with me, to continue the next 4 doses of IL-2.

When I got her home, she didn't have the energy to move at all in the car. I ended up having to lift her 66 pound body by myself, which ended up injuring multiple muscles and tendons in my arm. She needed full support with the Flagline harness and a large fuzzy sling, with which I barely got her into the house. She didn't have the strength to budge from the spot I set her down. I think she made it out to potty once that evening, and once the next morning, with the same heavy duty support.

My nurse friend helped me administer the 2nd dose of IL-2 at home the 2nd day home. Helga was too weak to go outside for potty. Early Sunday morning, I woke to find Helga had a BM laying on the floor. I cleaned it up. A few hours later, she had another BM again just laying down, and this time it was a diarrhea mess. It even got all over my MacBook charging cable/charging block and a chair, missing the floor air vent by inches!

I cleaned the floor, the dog, the chair, and the cord - total nightmare, 0/10, don't recommend. I called the vet, who recommended pro-biotics. I procured them, and was able to feed them to her with some rice and organic chicken. I was told lethargy was to be expected.

I tried to get Helga up with her supports to go outside, but her back legs were just flopping, like she just didn't want to get up. I then tucked some pee pads around her backside, in case of more accidents.

In the morning, Helga had another accident. I called the vet again, because I still could not rouse her to a sitting or standing position; her back legs seemed almost paralyzed, and her remaining left forelimb was badly swollen. They recommended I take her to the family vet. That seemed odd, since they were not involved much with her care at this point. I called my friend for help to carry her to my car, and I took her to the big vet emergency hospital which had been part of her treatment.

After an endless wait of several hours in the ER, the vet finally examined her and came to discuss the situation. His demeanor was very hushed  and serious. He said her condition was very guarded - she was extremely nauseous and had some difficulty breathing. I asked if this was a reaction to the treatment, and he said he didn't think so. I asked if the swollen leg was due to the pressure sore that had developed over the past week, and he said no. He thought all of this decline was due to disease progression. On radiographs and ultrasound, he saw a lung mass and spleen mass. He felt euthanasia was the best option. I had him consult with the oncologist at the other office.

The response was that I could keep her there overnight with comfort care and transfer to the local oncology team for another $3,000 (on top of the $20k already spent). I asked the ER vet if he felt any meaningful improvement was possible, and he said no. It took me a number of hours to sit with this information, before I finally concluded euthanasia was really the only option to ease her suffering. I sat with Helga for several more hours before I was ready, giving her all the love and massages and using up all the tissues in the room. Although I was glad I was with her during this ordeal, it was one of the worst experiences of my life.

Afterwards, I began reading about immunotherapy in general (not specifically about the Elias protocol). I learned that some patients have an unexpected response including hyperprogression of their cancer. Scientists believe certain patients may have genetic predispositions to this, but they have not fully identified what those are, how to screen for them, and certainly not for all cancers. I am not sure if this research is also being carried out for canine patients, but it should be.

I was not warned of this potential outcome of the Elias treatment. I was warned that the treatment may have no effect, may not prolong life as long as some subjects in the trial experienced. But no one said the treatment would make Helga exponentially worse off. I believe this is what happened to her, and it angers me that I didn't have this warning. I might have picked a different path of treatment for her.

I realize that any dog with OSA will eventually succumb, but my dog barely lived 2 months post surgery with all of the "state of the art" interventions available. Something was missed, either in the initial evaluations of her condition, or during treatment. I recommend that you grill your vet, cross examine them, interrogate them, to gain the fullest understanding of your dog's condition and the potential for this type of outcome before you consent to the Elias treatment or any other immunotherapy. You're the only true advocate your beloved dog has, and unfortunately you have to be maniacal in your quest for the answers for them.

My heart goes out to anyone dealing with this cancer for their dog - I hope the research and guidance becomes infinitely better!