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Sterile Hemorrhagic Cystitis
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New Hampshire
Forum Posts: 71
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27 March 2019 - 4:25 pm
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Hi Family …

*tears of hope*…… *tears of joy*

1. We went to the vet to get Elspar today. And I believe that he is already responding to treatment. One node is almost undetectable and the other seems smaller than a peanut. He also feels much better today … at the vet Emerson wasted no time sneak-wrestling and body-slamming his little brother as he was heading to the back for treatment today. Their antics made the ENTIRE oncology waiting room chuckle. #brothers

2. I talked to the vet about the clinical trial that I found. He told me that it was legit…. run by the BEST doctors and that I would be in excellent hands. We reviewed the clinical trial criteria and Emerson would qualify…. so, i was advised to call the office to talk about eligibility and enrollment.

3. The oncologist (clinical trial) confirmed that Emerson would be eligible. We also discussed the fact that it’s a double-blind, placebo-controlled trial where 75%!!!!!! of dogs receive Tanovea and only 25% receive placebo. AND, if he were to receive placebo, they would give me $1,500 to use towards the treatment that I desire. All study costs are covered, including emergency vet visits, check-ups, and a full work up.

You guys …. *tears*

Family, we are soo blessed.

The catch? Well, he won’t be eligible to start for at least 2 weeks, because we did chemo today … and because he’s responding. We’ll ride the wave until he stops responding. I asked if they have an enrollment cap, and they do not … and, to date they have a total of 10 dogs enrolled.

Can you believe this ……..

(also, thanks soo much for suggesting this Rene. You have no clue how grateful I am)

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27 March 2019 - 4:57 pm
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I am so happy for you Kim!!  ((((hug)))) I believe that is the best news that you could possibly get.. totally!!  I know you will be able to breathe easier now, doing a happy dance here!!

united-kingdom-2017-celebration-of-light-fireworks.jpgImage Enlarger

Hugs,

Jackie, David, Mitchell, Bo, Andy, Oscar,and the coolest feral tripawd kitty Huckleberry

https://paws120.....pawds.com/

The Rainbow Bridge



Forum Posts: 24918
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27 March 2019 - 9:04 pm
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This is PAWESOME! Kim I’m thrilled. And yeah, those are some of the very best vet oncologists on the planet who will be overseeing Emerson’s participation. You are in great hands.

Ride that big ol happy recovery wave for a long time Emerson, ya hear? We are cheering you both on!!!

It's better to hop on three legs than to limp on four.™
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Virginia




Forum Posts: 17331
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29 March 2019 - 10:46 pm
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Just catching  up o. Emerson’s good news and wanted to say

YAAAAAAAAAAY  FOR  EMERSON!!!  

Amd a big YAY to your hoomans fot being such a powerful advocate for Emerson!  Looking forward to  finding out more on rhis exciting  treatment plan.

Now quit body slamming  your little brother!

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!

New Hampshire
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3 April 2019 - 10:29 pm
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Sally –  I totally cracked up when I read “now quit body slamming your little brother” …hahahahahaha!!  They’ve been rough-housing forever. Literally since day 2. One time Rocky ‘caught’ a paw or tooth in the eye and I had to rush him to the ER. He was only 8 months old and I was beside myself thinking that he was going to go blind (the eye went completely foggy and white as it healed). Vets assured me that he could see out the eye despite how it looked. I will split them up when they get too rough but watched them do the same WWE style wrestling on camera (when I am away from home). I’m glad that they truly love each other… and aren’t *trying* to hurt each other.

… So today was an optional oncology visit day. I scheduled this appointment last week and was going to cancel it. But after 2 sleepless nights this week, I figured that I needed to talk things through with Dr. R.  As I mentioned last week, Emerson is out of all of the ‘good’ options with the exception of a new drug Tanovea. This drug has shown exceptional promise with ~75% of dogs going into remission  (similar to the very first protocol). This drug is entirely too expensive for me to consider… approximately $800/treatment .. for a total of 5-6 treatments.

However, after hearing that we were out of options last Monday, I actually found a clinical trial, using Tanovea that is actively accepting patients. The big caveat is … well, I’d have to wean Emerson off of steroids for him to be eligible for the clinical trial. And, the steroids that he’s currently taking plays a role in suppressing his immune system and controlling the lymphoma. To add additional risk, the clinical trial is a double-blind placebo-controlled study… where 75% of dogs receive Tanovea and the remaining 25% of dogs receive placebo (ie. saline solution). So, I found myself losing sleep over the prospect of prematurely weaning him off of prednisone and enrolling him … and in the worst case scenario … having him receive placebo. As a worst nightmare, I would be cutting his remaining time short by fiddling with the standard protocol/effectively denying him the benefit of treatment. (Does this make sense… not sure if I explained it well ?)

So, I had a pretty frank conversation with Dr. R about this. (let me state this, Dr. R is amazing… I feel soo blessed to have found him!). Sooo… Dr. R and I talked about and he framed the entire situation really well for me: Last week, we gave him a rescue does of Elspar (chemotherapy), which has effectively pushed him into partial remission… all of his lymph nodes, except for 2 are normal sized. And the remaining 2 are much smaller than they were last week. Dr. R. said that Emerson has a relatively low tumor burden at this point, and *This* would be the ideal time to wean him and try for the study. He said that if Emerson ends up with placebo, that his disease is likely to progress within a week or 2 at which point we can exit the study re-initiate prednisone or do another rescue dose of something else. He says that this is the ideal time to try if I’m going to try. 

I took a deep breath and we will start our accelerated prednisone wean tomorrow and he should be able to qualify for the study by april 17th.

I talked to my mom about this. She is the type of person to always play it safe…. she is *not* on board; but, says she’ll support any decision I make… I have time to work on her winker

Tomorrow, I’ll make some phone calls to get everything set up … I feel soo lucky.

The Rainbow Bridge



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4 April 2019 - 9:24 am
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I totally see what he means, everything you said makes sense. YES! This is your window of opportunity, I’m happy to hear you came to a decision that would make you excited to run with it! 

Let us know how the withdrawal goes. We are all keeping our fingers and paws crossed for continued progress.

It's better to hop on three legs than to limp on four.™
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Virginia




Forum Posts: 17331
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4 April 2019 - 10:22 pm
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You have given so much thought  to this, and you’ve  had good input from your Vet.  I like that, if it is a placebo,  or if it isn’t,  but just isn’t working, you’ll know fairly quickly and can go back on the other plan.  IF it ends up being a placebo, at least you wouldn’t  have to do a wash out phase before going back on the Pred.

I’m  reading between the lines a vit, and may be way off base, but I think  if you didn’t  try this approach,  you would be second  guessing  yourself with the “if only” or “what if” thoughts.

We’re  all cheering for Emerson😎  You’ll  be able to tell how Emerson is feeling by his many times he body slams Rocky a day😉

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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5 April 2019 - 3:53 am
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Sorry I am late, busy couple of days. I am really thrilled for you! We don’t always get that window of opportunity to line up the way we need it but it really sounds like this is going to be your best opportunity heart

I also hope weaning off the pred goes without too much trouble. Will be looking for your posts.

Big hugs heart

Jackie and Huck 

Hugs,

Jackie, David, Mitchell, Bo, Andy, Oscar,and the coolest feral tripawd kitty Huckleberry

https://paws120.....pawds.com/

New Hampshire
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5 April 2019 - 7:05 am
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clinical trial intake scheduled for April 19.  

Btw, Emerson is 100% himself and feeling well after a pred. dose reduction.

Also, I am profoundly grateful for all of your words and support. It means the world to me.

The Rainbow Bridge



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5 April 2019 - 12:23 pm
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Pawesome! I’ll bet the 19th cant come soon enough.

And we are grateful for your taking time to share your own journeys with us. Jersey and Emerson are so proud that you’re helping people with their stories.

It's better to hop on three legs than to limp on four.™
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11 April 2019 - 12:15 pm
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Awesome news.  Keep kicking butt Emerson.  Good luck with the study and I am praying he gets the actual drug 🙂

hugs

Michelle, Angel Sassy & Angel Bosch

sassymichelle-sm.jpg

Sassy is a proud member of the Winter Warriors. Live long, & strong Winter Warriors.
sassysugarbear.tripawds.com
07/26/2006 - Sassy earned her wings 08/20/2013

05/04/2006 -  Bosch, Sassy's pal, earned his wings 03/29/19  fought cancer for 4 months.

"You aren't doing it TO her, you are doing it FOR her. Give her a chance at life."

New Hampshire
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12 April 2019 - 9:19 pm
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Thanks again everyone for your kind messages, well wishes, and prayers. We (the entire Sherwood family) appreciate it… 

I just got home from a week in Denver. I admit I had tears in my eyes as I left last Sunday … and when I called my mom from the airport she told me that Emerson had 2 accidents in the house, immediately after I left. That didn’t make me feel any better. But, mom encouraged me that he’d be fine and not to worry. And I boarded the flight as a bundle of nerves…

After some really insane delays, I touched down in Denver at 1 am Monday morning, and my mom called me as I hopped into a cab (it was 3 am CT time). She was up letting Emerson out (lingering pee issues from sterile hemorrhagic cystitis). She talked to me for 30 mins and I told her how nervous I was and she told me to stop being ridiculous. LOL!!!  Her first 2 nights with him were tough because of the prednisone step down, he was panting and restless … and on one of the nights, Mom called me and said that Emerson was really restless, panting, shaking, refusing to come to her and licking his lips. This is a ‘tell-tale’ sign for “My Tummy Hurts” … which can be solved with a heaping spoon of Merrick Turducken!!!  Thankfully, I had left 5.5 cans of food at Mom’s house. So, mom took the half can out of the fridge and warmed it up in the microwave (Ehhh… spoiled?!?!). And, he settled down 20 minutes after a few spoons of food.

Crisis averted.

So, I haven’t checked his lymph nodes since I’ve been home because it will send me into a tailspin of worry. Instead, I watched how he’s acting and he’s pretty much the same since I left. He greeted me enthusiastically @the door and then tried to snatch a squeaky toy away from Rocky as we walked up the stairs. (…this lead to 10 seconds of a growly game tug of war. All normal!)

And for a few doses of cuteness:

1. Rocky had his annual checkup last week Friday. (I started using a vet who does house calls last year. Yes, it’s a bit pricey… but I see how much better they do when the vet comes to our house versus when we go to the vet. It’s totally worth it, in my opinion) As you already know, we spend *ALOT * of time at the vet for Emerson. But, this visit was primarily for Rocky. When the technician sat on the floor to restrain Rocky, he started whimpering and trying to get away. Mr. Emerson responded by running over to Rocky to console and calm him with a shower of doggy kisses and then he proceeded to investigate what the technician was doing (… she was holding him, that’s it). 

2. A few nights ago, Mom said that she heard Emerson wake up and hop off of the bed in the middle of the night. This is what he does when he needs to go pee; so, if you get up and walk to the back door, he’ll make his way to the yard. And, if not, he’ll use the pee-pee pad by the back door. Anywhoooo… mom didn’t fully wake up and didn’t let him out. So he used the pee-pee pad and then had trouble jumping back into the bed when he came back to the bedroom. She thinks some time passed when she was eventually awoken by a little, fluffy Rocky-dog standing over her/on her pillow and growling in her ear. Mom assumed that Rocky had to pee and when she turned on the light, she saw Emerson sitting patiently bedside. She picked Emerson up and put him in bed… and said, “Ok Rocky, let’s go”.  Mr. Rocky responded to by walking to the foot of the bed and curling-up to go back to sleep. YES! Rocky woke mom up to ask her to put Emerson in bed.

…. where did I get these dogs from? I just love them soo much… their love for each other leaves me in puddles.

Virginia




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12 April 2019 - 9:35 pm
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First of all, what a great Mom you have!  Emerson  clearly  has a spectacular  Granny!😊

And I thoroughly  enjoyed  reading  about the bond Emerson and Rocky have.  Gave me the warm fuzzies❤  I always believe  a dog should have another doggy pal if at all possible.  It’s  so important they have one of their own species as a pal.  And the stories  you just shared about Rocky and Emerson are proof!

Cheering for Emerson!

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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13 April 2019 - 7:24 am
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Hahah! I love that communication! And I love your mom… she sounds like a special lady. I am so glad that you are doing everything you can to breathe and get through this without losing it. And it sounds like everything is going pretty well over there. 

You are on the final stretch here… praying also that Emerson gets the real deal and that things continue to go smoothly.

Hugs,

Jackie and Huck

Hugs,

Jackie, David, Mitchell, Bo, Andy, Oscar,and the coolest feral tripawd kitty Huckleberry

https://paws120.....pawds.com/

The Rainbow Bridge



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13 April 2019 - 8:49 am
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Heh heh you and your mom are quite a team! She looks after the pupperz with as much TLC as you do, obviously it’s hereditary 🙂

Glad to hear things are holding strong with everyone. Keep smiling, keep treasuring those funny little moments, they are such a gift!

It's better to hop on three legs than to limp on four.™
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