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8 year old Great Pyrenees just diagnosed
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Member Since:
15 June 2023
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7 July 2023 - 8:35 pm
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Hi.  First off, I’m not a vet or an expert.  But I’ve had the unfortunate experience of being around cancer with close friends, a girlfriend, and now Ophelia, and i research A LOT. 

I personally would not choose that route, and didn’t with my girl, because the longer that that tumor is in his body, the more chance that it has to “micro-metastasize”.  Meaning that cancerous cells too small to be seen by an x-ray or even a CT scan break off and go to some other part of the body.  It’s these cells that cause osteosarcoma to eventually metastasize in the lungs (most often).  The statistics show that 90% or more of dogs already have micro-metastasize when they’re first diagnosed.  It’s why they do chemo in addition to amputation.  Chemotherapy is a systemic treatment meaning that it’s treating the whole body/organism. 

there is also immunotherapy that is also a systemic treatment.  

i really hope that I’m not coming off as a “know it all”, but i read that and i just felt that you should know these things. 

i also have a real problem trusting vets AND human doctors. I don’t believe that they’re always up to date on the most advanced treatments for all sorts of things.  You have to take control of what is going to happen with your baby, and knowledge is power. 

My decision in almost your exact situation was driven by wanting that tumor out of her body as quickly as possible.  And Ophelia wasn’t even limping at the time of amputation.  It hurt me a lot to have to do that to/for her.  It still does.  

Virginia







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7 July 2023 - 9:49 pm
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Just want to add a  link to "Hazel" who was NOT a candidate  for amputation  and went the palliative route. She did well with it.

It's my understanding,  and I could be wrong, henerally this procedure is used if not a candidate for the dvurgery

      

    https://tripawd.....tive-care/

Michael gave good insight why he didnt go that route with Ophelis.

Happy Hannah had a glorious additional bonus time of over one yr & two months after amp for osteo! She made me laugh everyday! Joined April's Angels after send off meal of steak, ice cream, M&Ms & deer poop!

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8 July 2023 - 7:03 am
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Is there a way to reply directly to a specific post?  I’m trying to use the site correctly and not the most technologically advanced! 

I did ask the vet for additional pain relief so now I have galliprant 100 mg, gabapentin 300 mg 3 times per day, tramadol to give as needed.  He suggested trying antacid to help with stomach upset from the galliprant.

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8 July 2023 - 7:16 am
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Benny55,

 

Thanks so much for that link to Hazel’s story!  I wonder if stereotactic radiation is the same as cyberknife.  We were presented with the option of stereotactic radiation (just trying to get into a place that does it asap) and chemo and bone strengthener for him.  The idea, though, is that I would pivot to amputation at any point along the way if necessary.  I spoke with the surgeon there too and she did not have any concerns about his size/weight and amputation.  It’s sad that my vet is likely discouraging everyone with big dogs from doing this when it’s given many a good amount of quality time.  The place I had a consult at on Thurs was able to at least get him on the bone strengthener.  It did seem to help with pain although I don’t understand the mechanics of how that works.  While they offer chemo, only their office that is 3 hours away offers the radiation.  Just my luck the Radiologist there is out of the country for 3 weeks and backed up on appts when he returns.  I found another place about 2 hours away.  The soonest they can even get him in for a consult is the 19th.  Of course, they may say he is not a good candidate for it.  In that case, I am back to amp as my only viable option. 

question re surgical centers.   I did ask the place we had consult at if there was someone there 24/7 with the dogs after surgery.  Apparently they only have a nurse there overnight and the Doctors are on call for emergencies.  Would you be comfortable with this?  Should I try to find a place with a Dr there all night?  Are there such places? 

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8 July 2023 - 7:28 am
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Michael,

Thanks so much for your response.  The oncologist actually told me there is research that the cancer cells tend to focus  in on the area of the tumor until you remove it then they are more likely to get active elsewhere  (addressed by chemo).  Honestly what you are saying makes more sense to me though.  Yes, that must have been really tough going ahead with the amp when she wasn’t limping.  I read your posts and could feel the agony you were experiencing throughout your whole decision making process.  That’s where I am right now.  I can’t think of or focus on anything else.  Thankfully, I am not working because I would surely get fired.  just can’t function.

I have several more opinion consults set up before we move ahead with anything.  Still really hoping University of FL will get me in with him after seeing his records.    They also are enrolling for 2 clinical vaccine studies so I signed up for interest in those….might also get us in more quickly for a consult.

Virginia







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22 February 2013
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8 July 2023 - 1:17 pm
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First of all, you are doing a fine job of navigating  this site.  It can be a bit  confusing sometimes  even for techie people (which I am not!)

And then add all the stress you're  under to figuring things out....yeah....very exhausting  mentally  and . physically.  Of course are sogs are blissfully  unaware and just continue to enjoy the present 

Glad the pain meds and bone strengthener are helping. 

  And yes,   stereotactic radiation is the same as cyberknife

Apparently they only have a nurse there overnight and the Doctors are on call for emergencies.  Would you be comfortable with this 

To me, that would be way better than trying to bring her home the same day as sirgery.  I personally would not have a problem knowing a Vet Tech was there on site and a Doctor .was on call.

Just know that whatecer decision you make, you are making out of love and that is always the right decision.   Once you are clear on a path forward (well, as clear as anyone can be on this crazy journey) you will find a sense of relief.

Take deep breaths, eat lots of junk food....all this helps calm the nerves👍

Hugs 

Sally and Alumni Happy Hannah and Merry Myrtle and Frankie too

Happy Hannah had a glorious additional bonus time of over one yr & two months after amp for osteo! She made me laugh everyday! Joined April's Angels after send off meal of steak, ice cream, M&Ms & deer poop!

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8 July 2023 - 9:09 pm
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You’re welcome. I know that this is all awful.  I still can’t even believe that it’s happening.  Every morning i wake up and have to remember that it’s real. I just wanted to offer up what I’ve learned.  It sounds like one of your main obstacles is finding a good vet hospital that offers these services. Hopefully UF can get you in.  If they’re like CSU here in Colorado, you might be able to move your appointment up by calling every day to see if there are cancellations.  I was able to move Ophelia’s appointment up by about 3 weeks doing this.  I ended up cancelling it because the vet hospital had a slot for surgery come open. 

i don’t know if this will be helpful to you or not, but i thought that the way that Ophelia’s oncologist explained the treatment options was informative and very easy to understand.  I had to put it on a YouTube video because i have no idea how to post pictures or documents. You’ll have to screenshot it and probably zoom in to read. 

The Rainbow Bridge



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9 July 2023 - 8:43 am
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Is there a way to reply directly to a specific post?  I’m trying to use the site correctly and not the most technologically advanced! 

Yes if you use the quote icon located to the top right of the post you want to reply to. Great question! And you are doing GREAT navigating the forums so no worries.

  I wonder if stereotactic radiation is the same as cyberknife.  

Yes it is.

It’s sad that my vet is likely discouraging everyone with big dogs from doing this when it’s given many a good amount of quality time. 

Sadly we see this all the time, even after all these years. Many small animal practice vets just don't see enough large amputee dogs to know they can do so well on three.

question re surgical centers.   I did ask the place we had consult at if there was someone there 24/7 with the dogs after surgery.  Apparently they only have a nurse there overnight and the Doctors are on call for emergencies.  Would you be comfortable with this?  Should I try to find a place with a Dr there all night?  Are there such places? 

As long as someone qualified (LVT -- licensed veterinary technician) is there overnight that would be OK by me. I doubt you would find an overnight vet anywhere but a 24-hour emergency clinic.

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10 July 2023 - 1:23 pm
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Michael,  I really appreciate your sharing the you tube video to explain but when I tried to access it, it said it was private.  The email I use for you tube is [personal information redacted by moderator].  I don’t know if that would help to be able to share it.  

Yesterday, I realized I was missing out on quality time I have with Honor right now while I’m so focused on trying to help him.  He loves long walks and we used to walk to the lake in our neighborhood most mornings.  Since he hasn’t been able to do that, I decided to start driving him over every morning and I let him walk around there for a bit.  We did that again this morning.  This will be our new routine for as long as he can do it to replace the old.  The zoledronate really seems to have helped him a lot and he was acting a lot like his old self.  If I didn’t already know what was going on with him, it hasn’t been visible the last 2 days. 

Since I got home from our outing this morning, I’ve been completely overwhelmed again.  The specialist that has stereotactic radiation was able to move our appt. up to this Thurs (from the 19th).  Then a holistic vet I had him scheduled at for next week moved me up sooner to Wed. morning.  Not expecting much from that but it’s where he would be doing physical therapy/rehab whenever we do go through with amputation.  One of my other appts. was moved to Friday morning.  This is a place that I originally scheduled because I thought they had radiation but found out they don’t any longer.  I’m not even sure if it’s worth going.  The problem is the poor guy is now scheduled for consultations Wed, Thurs and Fri!   And the one on Thursday is a 2 hour drive each way. So much for our new morning going to the lake routine.  

In the midst of all this, University of FL Oncology called me and offered an appt. on August 7.  So far out. icon_cry    I kept it in the hopes a cancellation might come up, but can I really sit around and do nothing until August 7?  Due to the misdiagnoses from 2 vets and a specialist when he saw them in April, May and June, this issue has been symptomatic since the around end of March when I set up the first appointment.    I really don’t know what to do here.   Add to that, there are all those various vaccine options and, in order for him to get the Yale one, for example, the closest locations are 11 to 13 hours one way and having to do that twice within 3 weeks somehow with a dog that doesn’t like the car so much….not to mention also having children, 2 other dogs and 2 cats.  My husband said he could drive him but having a difficult time picturing Honor doing that kind of drive when the furthest car ride he’s ever been on has been about an hour and I definitely can’t picture him doing it without me.  On Thursday, we’ll be doing a 4 hour roundtrip drive for his appointment and that’s going to be pushing it.  The Elias vaccine could only be done after amputation and, if we do the radiation, he’s not a candidate for that anymore even if we do the amputation later.  Looking into the possibility of Immunocodin.  Any thoughts?     Another thing about UF is they probably could give me better educated opinions there about the immunotherapy vaccines and they are actually currently enrolling for 2 vaccine clinical studies there right now for this cancer.  

Apologies for the rambling post.  My mind is going in a thousand different directions.  I was going to attach a picture of Honor enjoying his outing this morning, but I feel very tech. challenged on this site! 

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10 July 2023 - 2:11 pm
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I sent you an email with the document but also changed the setting on the video so that you can watch it. My bad.  

i also included links to three animal hospitals in Florida that have cancer specialty departments.  And they all offer the ELIAS vaccine.  here they are again though. 

https://www.advetcc.com

https://bluepea.....itland-fl/

https://animalc.....clinic.com

i have no idea how far you might be from them, but maybe traveling and utilizing airbnbs to stay when you can’t do a round trip ?  

Just trying to help with ideas. 

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4 July 2023
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10 July 2023 - 2:48 pm
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Michael,

First, thanks so much.  I really appreciate your trying to help me out with ideas/research/finding specialists when you just had to go through many weeks of all this stress yourself!  

Blue Pearl in Maitland is actually where I already have a consult scheduled this Fri.  It’s only about 30 min from me.  I had originally set it up thinking they had stereotactic radiation but that’s the one where I found out the Dr. doing the radiation recently left so they aren’t offering it right now.  I had been considering canceling it but it may be worth seeing what they have to say about the Elias vaccine.  I am a little reluctant to do anything at Blue Pearl, however, because I brought Honor to a specialist there at the end of June after 2 vets failed to figure out the cause of his limping  (later realized it’s because they both inexplicably failed to xray the wrist of his affected leg).   The Dr. at Blue Pearl also completely missed the diagnosis and did not look at his wrist.  Considering she’s a specialist and between all these vets they did multiple images and an ultrasound, it’s concerning she didn’t discover something that I found myself about a week and a half later!  Ugh.  I need to let that part go because it gets me so frustrated/angry and is just a waste of mental energy I don’t have right now.    

The Animal Cancer Care Clinic is where we were last week that talked about the stereotactic radiation.  Unfortunately, they no longer offer the Elias vaccine there. I actually think she said they’ve never done it there….that there are very strict requirements for shipping the sample and that, due to cost of @$15,000 I don’t think it’s been requested there.  

The other place is about 4 hours away.  Since I think I’d need to do the amputation at the same place that offers the vaccine (?) it’d probably need to be somewhere closer to home. 

Ok, I’m going to go back and check out the information you sent previously that I didn’t know how to access.  Thanks!  Hope Orphelia is having a good day and looking forward to seeing more videos of her progress. 

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10 July 2023 - 6:35 pm
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That would make me hesitant to use Blue Pearl too.  Have you asked them directly why they didn’t take images of the whole leg?  Was it the oncologist or just a regular vet who did that?  I think that i might be okay using them if the oncologist is a different doctor and has really good credentials.  

With the third place that you said is 4 hours away, it couldn’t hurt to do a consult there, right?  Ophelia’s vet hospital is 45 minutes away so it’s easy for me to say.  The number of trips that you’d have to take are pretty spread apart.  Taking out the initial consult and the unexpected trip to the ER, we have made only two trips in two weeks.  One for the surgery and one for the follow up with the surgeon today.  Still, 4 hours is a long trip. 

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4 July 2023
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10 July 2023 - 8:33 pm
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Yes, I think my concern is more how uncomfortable he might be traveling home 4 hours after all that.  Plus, if there were complications he could end up having to stay there several days and it just seems tricky logistically.  Yes, the oncologist at Blue Pearl is a different Dr.  The Dr who saw him was an orthopedic specialist and she actually did a great job on one of my other dogs TPLO surgeries for ruptured ACL but I guess she is a better surgeon than she is at diagnostics.  I think she saw the prior to vets had pinpointed possible issues in his shoulder and elbow causing the problem.  She ruled those things out by doing an ultrasound in those areas but neglected to search for where the problem actually was coming from. 

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11 July 2023 - 8:59 am
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Well, things have gotten even more confusing.  

University of FL just called to move his appt up to July 27 (from August 7) in response to my letting them know one Dr. had suggested he’s a good candidate for Stereotactic radiation so we don’t want to wait so long that it’s no longer an option.  I asked her if there was any possibility there would be a cancellation and he could move up even sooner, but she said no because she has a very long cancellation waiting list of people ahead of me and this was the earliest I’d be able to get.  

We have an appt at veterinary specialist place 2 hours away on Thurs that does offer the stereotactic radiation.  The place I consulted at last week closer to home only offers chemo/surgery but they suggested this place as a practice they coordinate with frequently when one of their clients needs radiation.  So, assuming the radiation oncologist there agrees this is a good option for him (she may not), his radiation would be there and chemo at the place we already visited. 

Now I face a dilemma.  What if I get to this appt. on Thurs with him and they are able to start the radiation ASAP….like the same day or following week?   And, then, of course the place that does chemo is ready to get going as soon as we know the radiation schedule.  Do I hold off on doing anything until I see what University of FL has to say?  Keep in mind the appt. at University of FL is a consultation and who knows if they will agree the radiation is a good option.  If they do, I have no guarantee on how fast they’d actually start moving with it.  

There are also 2 clinical immunotherapy vaccine trials currently enrolling at UF (at least according to their website).  One is an MNRA type vaccine and not sure on the other.  I recall one required amputation and the other was being given with either amputation or radiation.   So I’m also not sure if this is something we might be interested in.  If they haven’t already gotten some dogs through the trial so they have a sense of safety, I don’t know if I’d want to risk it and would feel more comfortable with one of the vaccines that have more of a track record already.  Also, I’d need to make sure some dogs aren’t getting a placebo.  It’s not a case where they are offering much in the way of no cost care for participating in the trial other than no cost for the vaccine and the monitoring appts….but I have great pet insurance so that isn’t a benefit to me. 

Ugh.  So many difficult decisions which are hard to make under duress like this.  

Thanks to anyone who took the time to read through this!

Virginia







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11 July 2023 - 9:22 am
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Apologies for popping in so quickly but I'm having to head out and will be back late

Two  quick questions to help you process things.

What is the pain like? Even with the zolenate

What kind of concerns have been expressed about a fairly immediate possibility of a fracture?

Thank you for taking the time to share all of your thoughts as you process everything. As best you can, try to Free Your Mind and shut things down to maybe three or four top priorities. That can maybe help you clear the clutter from all the research, the possibilities, the what ifs.

We know you are at a point where decisions must be made and a path forward must be taken. The relief of accomplishing that will free you up from so much stress.

Again, apologies for such a quick pop in and I'll be back and I'm sure others will chime in too.

Extra hugs to you

 Sally and Alumni Happy Hannah and Merry Myrtle and Frankie too 

Happy Hannah had a glorious additional bonus time of over one yr & two months after amp for osteo! She made me laugh everyday! Joined April's Angels after send off meal of steak, ice cream, M&Ms & deer poop!

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