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Sully's Lung Mets, Palladia, and  Doxycycline
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Member Since:
9 December 2021
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17 February 2022 - 2:34 pm
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Hi again everyone,
Feeling like frequent flyer in the forums lately as we try to chase down options and answers about Sully and the disputed type of cancer that resulted in his amputation, and now lung mets. Hopefully that's okay and not terribly irritating! 
We're waiting on UPenn to get back with us on their earliest available appointment for Sully for a second opinion. They did confirm via email that "the options will be limited". We considered not making the 2 hour drive, but ultimately decided we'd rather see them than the oncologist we're currently seeing, and get another opinion just to be sure, so we're waiting on a date now. 
In the meantime, we're still on the current oncologist's schedule for a re-check on 3/10, and he had his first dose of Palladia yesterday with no side effects so far. 
I've been researching so much, so I reached out to current oncologist to see if she thought adding Doxycycline would be a good idea, as it sounds like many dogs here and in other case studies online were treated with both Palladia, or another metronomic chemo, AND Doxycycline. 
The response I got was "Doxycycline is not indicated in this case as there is no clinical proof of it being advantageous for cancer fighting benefits. Also, it can cause severe nausea and can cause hepatotoxicity (elevated liver enzymes) so we will not be adding that to his protocol at this time."
I'm so lost, and so frustrated. Everything we're hearing from our oncologist seems to contradict what we've heard elsewhere. Is this just the way things go with oncology? I know I've read in multiple places here that "Studies have shown that when given at daily at half-doses, Doxycycline may inhibit blood vessel formation and stop tumor growth. It doesn’t affect the existing tumors, however." Does anyone have links to these studies? How does my oncologist not know this? Are there new studies showing otherwise? 
Sully has taken Doxycycline before, a few years ago, for an anaplasmosis positive result (darn ticks!). We always gave it with food, and he seems to have no nausea. Can't speak for his liver enzymes, though. I don't know that we tested before or after? 
I'm not asking for veterinary advice here (however, I'll hop on over to the vet forum and do that if we think that's a good idea?), but info on whether your dogs with mets have been prescribed Doxycycline in addition to metronomics , and if so, why did you vet say they were doing that? And did it cause issues?
Assuming we can get into UPenn in a few weeks, I want to be armed to the teeth with info and questions to make sure we're really getting the best info and care possible for Sully. 
Finally, I am going to try to post a picture for the first time, since I've never shared photos of Sully here. We'll see if it works!
Sully this past Saturday MorningImage Enlarger
Thanks so much, as always!
Teddi and Sully
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17 February 2022 - 6:40 pm
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I just wanted to say Sully is lucky to have you as Hoomans. I wish I had some advice or experience for you. Your picture come through and Sully looks awesome.

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17 February 2022 - 6:46 pm
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Thank you so very much! It’s good to hear that. I admit I’ve been questioning everything, every single day. So it means a lot, thank you! ❤️ Glad to hear the pic came through, too, so everyone can see what a sweet, handsome boy he is. This was last Saturday morning. We were sleeping and he was concerned, so I scooped him up and pulled him into bed with us. He clearly enjoyed himself. (Sully has always been welcome to crawl in bed with us, but has always chosen his own bed on the floor of our bedroom). 

Virginia



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17 February 2022 - 8:47 pm
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While I cant five you any feedback on the treatment,  the Doxy, etc, I'm glad you are going to pursue the consult  at UPenn.  You are definitely approaching this armed with as much information  as possible to formulate  your questions for the appointment. 

Had to chuckle a bit at the "side effects" the Onco listed about the Doxy.  Yes, there can be side effects, but there cert can be side effects with the Palladia too!!

I think hopping over to the Ask A Vet is a good place to ask about the Doxy.  Plus others may chime in here if they used it.

I do t know how current it is, but  The Dog Cancer Survival Guide book is chock full of therapies and discusses possibilities and options very openly,    While "clinical proof"  is nice to have, sometimes  anecdotal results are valuable  too.

That picture of Sullt..ADORABLE!!!   He looks so comfy and ready for  snuggles!.  And I'm sure he gets lots of snuggles with you♥️

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!

On The Road


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17 February 2022 - 9:42 pm
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Oh you could never, ever be irritating, no matter how many questions you post or worries you express, whatever. That is why we are here OK?

And as for that sweet face? Oh Sully! My sp_hearticon2! He looks so, so happy. As you go through all these ups and downs, try to keep that image in your heart when you start feeling down. That is Sully's essence right there, just pure joy right there in every moment.

I'm so lost, and so frustrated. Everything we're hearing from our oncologist seems to contradict what we've heard elsewhere. Is this just the way things go with oncology?

Honestly I don't believe it is. So far it's one oncologist you've spoken with, and it doesn't sound like this is the right partner for you and Sully. I'm keeping my paws crossed that you can find that perfect match at UPENN. Even IF the treatment options turn out to be limited, it's at least comforting when you have a vet who feels like a friend.

 I know I've read in multiple places here that "Studies have shown that when given at daily at half-doses, Doxycycline may inhibit blood vessel formation and stop tumor growth. It doesn’t affect the existing tumors, however." Does anyone have links to these studies? How does my oncologist not know this? Are there new studies showing otherwise? 

At one point, Doxycycline was used in metronomics because it was believed to have anti-cancer properties. Our Jerry took it as part of his metronomics protocol, along with his chemotherapy agent, cytoxan, and an NSAID. He had zero side effects from any of the meds, and for most dogs the most common one was cystitis (bladder infection) from the cytoxan. However, over the years the Doxycycline and metronomics as a whole has been shown to not be as effective as once thought. This is what Dr. Seguin reported to us a few years ago in "Lung Metastasis in Tripawds with Limb Cancer: Now What?"

So, I know that's not the news you wanted to hear. BUT, immunotherapy is being used in new and exciting ways now that wasn't even thought of back when Jerry was fighting cancer. It's unreal how much progress has been made since metronomics was pretty much the only option for treatment (whic we did start after we found out that Jerry had two very large lung mets, and it bought him eight more great months with us).

I'm hopeful that UPENN will be able to offer you some kind of therapy that the oncologist you've already met with hasn't gotten familiar with. Keep in mind that their brief feedback they sent over was based on your current oncologists notes. They haven't met you or Sully yet, and there may be other avenues to go down that haven't been discussed.

Stay strong! I know you can do it! Just look at your boy and know that your pawsitivity is great medicine for him!

Tripawd Power is coming your way!!! 

Tripawds Founders Jim and Rene
tripawds.com | tripawds.org | bemoredog.net | triday.pet

On The Road


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17 February 2022 - 9:45 pm
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Oh and I'm suuuuper happy that he's tolerating the Palladia! smiley_clap

Tripawds Founders Jim and Rene
tripawds.com | tripawds.org | bemoredog.net | triday.pet

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18 February 2022 - 1:00 pm
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Thank you so very, very much, Jerry! I at least appreciate knowing that we're not missing out by not getting Sully Doxycycline. I wish I understood why no immunotherapy options are being presented to us. 

But we are doing our absolute best to stay strong.

Today has brought another set of challenges. We heard back from UPenn, and their earliest possible appointment right now is not until April 6th. We asked to be scheduled, and to please be added to any kind of cancellation list. But we have not yet gotten any confirmation of that. And that's an awfully long way away, giving the cancer and awfully long time to grow in the meantime. 

I also emailed FOUR other oncologists that I could find nearby with a request for appointment that might be sooner. I sent all of Sully's records, and a notes that I could get a referral from Sully's surgeon as needed. They were:

1. Atlantic Veterinary Internal Medicine and Oncology in Townson, MD. They replied to say they are not taking new patients right now. 

2. Guardian Veterinary Specialists in Brewster, NY. No reply as of yet, 3+ hours later. 

3. Lancaster PET Emergency in Lancaster, PA. No reply yet as of 3+ hours later. 

4. VCA SouthPaws in Fairfax, VA. No reply yet as of 3+ hours later. 

I also filled out online contact forms for at least two other practices with veterinary oncologists. I'll be honest, I don't even remember who I all contacted at this point. 

We're still on the schedule with the oncologist we already saw on March 10th, to get bloodwork and x-rays/general re-check to see if the Palladia is working or not, if nothing else comes open for us sooner. 

On top of all of that, Sully seems more lethargic today, and is exhibiting some inappetence since yesterday evening. Is it because I feed him too many treats yesterday? Maybe. We were able to get him to eat a big bowl of boiled chicken breast, white rice, and some canned dog food at lunch time so we could get his 2nd dose of Palladia in this afternoon. 

I feel like my heart is ripped from my chest 200 times every day as we are encountering hurdle after hurdle. And to think that just last week, everything seemed fine and we thought he was doing great. icon_cry

If you all can think of anything else we should do, please let me know. 

Thanks to everyone always for the encouragement and great information!

Teddi and Sully 

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18 February 2022 - 1:04 pm
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I forgot to say thanks to you, too, Sally! We finally downloaded the PDF of the Dog Cancer Survival Guide , an I am trying my best to get through it and make notes. I ordered a couple of supplements to try, because at this point, why the heck not? 

Thank you always!

Teddi and Sully 

On The Road


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18 February 2022 - 5:21 pm
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WOW they are busy. It's good that you got on the scheduling list and a cancellation list too, right? I'm hoping that Southpaws is available. They are EXCELLENT and we've had quite a few members with Tripawds who were treated there. I've never heard a bad review. 

It's hard, but stay in the moment. As for the lethargy, it's possible that you are hypervigillant about Sully right now, and maybe he's just tired from all the excitement of living his life again. Yes, he could be tired of food because he's been getting so spoiled. Lay low on the treats and see how he does tomorrow. Hopefully you'll see some hunger signals again.

Being in a holding pattern is the worst feeling! You are doing everything possible to get answers sooner than later, so take comfort in knowing that OK? It sounds like there's not a lot left to do but hang tight. So, right now more than ever is the time to send some pawsitivity out to the universe, and be in the moment with Sully. Do things he loves to do, and soak up every moment! You have your happy, sweet Sully with you right now, and all he wants is for you to be happy right there with him. When you feel like venting, you can come here and vent. When you're with Sully, do everything you can to enjoy the day! You can do this!

Tripawds Founders Jim and Rene
tripawds.com | tripawds.org | bemoredog.net | triday.pet

Virginia



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22 February 2013
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18 February 2022 - 8:49 pm
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Your  perseverance in leaving no stone unturned in Sully's careqnd checking out all possible options is beyond admirable!  Truly!  I got "exhausted" just reading all the calls, follow ups, etc you managed  to accomplish in such a short time, and with no pawsitive  reinforcement  or help from some of Sully's Vets/current Onco etc.  Your efforts are Herculean.

You've put everything in motions now and yes, you have to wait for responses.  So as Jerry said, it's about hanging tight right now and focusing  fully on continuing  to spoil your Sussly and be fully present with him.  You probably won't  get any responses over the wee end

So try and "let go" and let the Universe,  or God, or Buddha are your higher power, all of the above.  Practice  some deep breathes as you release all worry for now.  

And remember,  we are all here for you in any way possible to help you help Sully. And we are also sending you lots of cyber hugs.  You have an inner strength that you don't  even realize you jave, but we do.  

((((((((((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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19 February 2022 - 2:50 pm
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Thank you so much, Sally and Jerry!

We are happy to report that SouthPaws responded, and got us in on March 4th. One thing of the list! Whew. So, so glad to hear others have liked them. I am very hopeful we’ll get better care there, even if there are no better options for us. And I believe we are still on the UPenn cancellation list. They have not confirmed this, but I did ask for it, so fingers crossed. Hopefully they will confirm Monday. 

I do think I’ll need to contact our current oncologist on Monday, too, to ask about a Palladia dose reduction. We have more lethargy today, and continued lack of appetite. Sully will eat some select high-value foods, but that’s it. No diarrhea or anything, but we can tell he definitely isn’t feeling well. He won’t play with me when I get his toys out, and is sleeping more than anything. Ugh, I feel terrible for putting him through this. Hoping it’s just a Palladia side effect and not actually symptoms of the lung mets growing more. 

Also, I’m having trouble telling if he’s coughing more. He’s had a “cough” (honk/gag) for a couple of years, after a dental procedure gone wrong where he had an adverse reaction to the anesthetic used by that particular vet clinic, that resulted in a seizure, and caused minor degree of tracheal collapse (we don’t see that vet anymore). I can’t remember if I’ve mentioned that here before or not. Anyway, it’s always been minor, and he’s never needed medicated for it or anything. But right now, I can’t tell if he’s coughing more frequently, or if I’m just super paranoid. I tried to ask the current oncologist a question last week about it, to see what a lung cancer cough sounded like in comparison to a tracheal collapse cough, or what to look out for specifically. The response to the email I wrote said “it’s hard to say” and I should “look for videos online”. Do they think I didn’t do that first? That I haven’t googled EXTENSIVELY to try to find a video that compares a tracheal collapse cough vs a lung cancer cough? I found some videos of dogs coughing, yes, but I can’t find anything definitive. AGH. Just venting. This practice just not a good fit. I don’t doubt that this particular oncologist knows their stuff and such, but I don’t feel good or comfortable having Sully under their care. I don’t feel like his case or my concerns are taken seriously. It makes me dread asking them about a dose reduction for his lethargy and appetite come Monday. But I don’t think I have many other options at this moment. 

I’m happy I don’t have to give him another dose until Monday. I’m hoping maybe this weekend break will help him perk up some. I don’t want to continue if it’s going to be like this. I also wish I wouldn’t have paid for an entire month’s worth of Palladia while we were there. 

Thanks again to all for all of the feedback, advice, and reassurance always! Going to go spend time with Sully, even if it’s just some sleepy snuggles while he isn’t feeling well. 

Virginia



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22 February 2013
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19 February 2022 - 8:50 pm
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Awwww.... snuggles with Sully therapeutic for both of you.

So glad you have an appointment with South Paws!  .Just the fact that they got back to you so qui is a good sign!.

Otherwise will have to chime in on the -"cough"..  My Happy Hnnah, although she got mets, never developed  a cough.  I have had a dog with "larynx  issues" and he had what I would describe as a "hack".   For now, try not to focus too much on every possible sympton of this or that (easier said than done).  You'll get some answers either from South Paws or UPenn..

Don't  know enough  about Palladia side effects to comment, other than to say some dogs DO have side effects and discontinue it.  Of course, some don't..

Would love to see some "Sully snuggle" pictures👍   

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!

On The Road


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20 February 2022 - 12:11 pm
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I hope Sully's feeling better today. Those side effects from the Palladia are pretty common from what I've learned here, so paws crossed that the dose reduction will help him get some sparkle back. Don't beat yourself up for starting the treatment, you never would have known if you didn't give it a go.

Deciphering the cough / hack is going to be tough given his history. Our Jerry had a cough. It sounded dry, and very short in duration, almost like we thought we were imaging it. I would liken it to when we get something light stuck in our throat and try to cough it up. Not a hard cough, just light and quick. Not until later as the mets grew in Jerry's lungs did the cough become more obvious, frequent, and last longer during each episode. 

I'm sorry the vet basically told you "google it!" because that's really what makes a lot of vets frustrated, is pet parents consulting Dr. Google! Ironic. Sheesh. While they're not a good fit for the long run, at this time all you can do is be patient and run with their suggestions until you get into Southpaws (YAY!).  I'm so glad you got in there. On Friday, a good friend of this community just brought her dog home from Southpaws after a tumor resection surgery, she had a great experience as far as I know.

We are keeping all of you in our thoughts and hoping for a nice, relaxing weekend together!

Tripawds Founders Jim and Rene
tripawds.com | tripawds.org | bemoredog.net | triday.pet

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21 February 2022 - 8:33 pm
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Well, our weekend did not go particularly well. Sully’s inappetence and nausea got progressively worse. Sunday afternoon, he had a bout of diarrhea. Luckily, only one.

Worse yet, Sunday night into Monday morning, Sully was up all night panting and breathing rapidly. I thought for sure his mets had just grown so big already they were causing serious issues. Around 3am, I thought about calling Lap of Love, or at least going to the ER vet to confirm whether or not it was his mets and if we needed to make that call. But I got him settled down until close to 6am. At that point, it finally occurred to me that his panting was actually because of PAIN, not inability to breathe due to mets. I gave him an extra dose of Gabapentin, and we were finally able to both get some sleep.

Unfortunately, I was sleeping hard enough at 7am that I missed the call from Sully’s current oncologist office about supportive meds I had emailed about over the weekend. I called back twice throughout the day and was assured someone would get in touch with me. I also emailed oncology again letting them know I had tried to call, just in case they didn’t get told about my voice messages, as I’ve had communication breakdowns like that at this office already. I was trying my best to not be annoying, but also to get Sully the help he needed. I was never anything short of extremely polite. They never called me back. I got an email at the end of the day saying (nicely) they were too busy and short staffed and would get back to me tomorrow.

I could scream. I know they’re busy, but Sully is suffering and I just want him to feel better. If they would have told me earlier when I called that they weren’t going to get to me, I would have called Sully’s primary vet or his surgeon to get something called in. But I was assured they’d be in touch by the end of the day, so I anxiously waited next to my phone all day instead. Then, at 7:30pm, after every other option is gone for the day, too, I find out otherwise. 

Luckily, I have a good stash of pain meds so I increased his dosage of Gabapentin from 600mg every 12 hours, to 600mg every 8 hours, and added 200mg of amantadine before bed (just started that tonight). 

Sully declined otherwise throughout the day today, too. When the time came for him to go out in the evening (around 6pm), we had to use his Help Em Up harness to support him outside. He was able to take a few hops and go pee outside on his own, but we had to help support him to come back inside. 

After all of this today, and this weekend, I think we have decided that even with a dose reduction and supportive meds, we cannot continue the Palladia with Sully. We just can’t take the risk. He hasn’t had a dose since Friday, and has only continued to decline progressively since then. No improvements. If we only have a few more days to weeks with him, I don’t want them to be like this. I want them to be as good as possible. 

In a final Hail Mary move, I reached out to the lead research professor at the University of Wisconsin about Radixact. I sent them Sully’s X-rays, but he had at least 4 lesions, if not more, and they can only work with 2-3. An assistant (?) responded. They were so sweet and helpful! They recommended a T cell immunotherapy study, but we live in Pennsylvania and I can’t drive back and fourth to Wisconsin every other week. It’s 13 hours one way. I desperately wish I lived closer. I could have done 1-3 trips for radiation, but not more frequently. I’ll lose my job. 💔

Finally, around 8pm, I called Sully’s surgeon in tears and left a voicemail in between sobs asking him to call in palliative care meds for Sully.

We do still have him on the schedule at SouthPaws at the end of next week (March 4), but I don’t know if it’s worth the 2+ hour journey there at this point. I really don’t want to keep putting Sully through experiments after this one with Palladia went so poorly if we only have a few weeks left. I don’t want to risk all of his remaining days being miserable. Not for such a low chance of success.

I wanted to leave no stone unturned for Sully, but at this point I am looking around and realizing many of the stones have been flipped, and some of the creatures living under some of those stones have turned out to be very unpleasant. 

I am not sure what else to say. I’m exhausted. I’m heartbroken. I’ve cried so many stressed and sad tears today alone, never mind over the past two weeks. I hope I’m not giving up too soon. I hope we can get Sully feeling good again on some steroids. I hope we can find a way to enjoy our remaining time and not just be sad. Any way at all. 

On The Road


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21 February 2022 - 10:13 pm
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Ohhhhh my heart hurts for you! I can hear the sadness in your voice and wish I could make things better. I'm sorry things are so hard right now.

It seems like it's still too early to say that Mets are causing his symptoms. Could it be the Palladia still working its way out? I wish you could get some vet insight on the situation so you could know for sure. I hope tomorrow you are closer with answers.

About his weakness at the moment. That Amantadine dose seems pretty high so if he's wobbly tonight that could be why. Our Wyatt was an 80 pound maniac barely phased by high pain med dosages but even 100 mg of Amantadine was almost too much for him. If Sully seems really out of it after these recent dosages don't panic ok? Just let the first vet who calls you back know.

Things are so crazy at vet clinics these days, I feel awful that you guys are dealing with the effects. I really hope he can be seen by a vet who can help asap. We are all surrounding you and Sully with love. Try to breathe. Stay strong. And Please keep us posted.

Tripawds Founders Jim and Rene
tripawds.com | tripawds.org | bemoredog.net | triday.pet

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