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Lung Mets, MIMIC Clinical Trial- tough decisions looking for others thoughts.
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Colorado
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15 March 2023
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18 July 2023 - 6:52 pm
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Back on May 21st Ellie went in for her 3rd round of carboplatin and they did scheduled X rays.  Pretty much the worst possible news came back that the cancer had spread to her lungs. After completely falling apart for a while I looked into our options and decided I didn't want to pursue a different chemotherapy.  I had looked into the MIMIC clinical trial (there's a great podcast here on tripawds), and after speaking with Dr Thomson, decided that we would wait a month and if there wasn't any huge changes I would move forward with the surgery to remove the existing lung nodules. 

on June 21st we got updated Xrays and there have been zero changes.  No new nodules and no growth on the existing nodules (I think she has 3 total). So I am really conflicted on what to do- the past 6 weeks have been so amazing with Ellie no vets, no medicine, no poking and prodding.  She's currently in no pain and we are just out living our best life.  "If there has been no change why rock the boat?" was my response. I messaged Dr Thomson and as most of us have grown accustomed to with this stupid disease I got a lot of good information, but nothing that really stands out as the right decision, so I am interested in your thoughts.

Dr Thomson stated that the best time to proceed with surgery is when the disease is stable, because it mostly likely means that she will have the least number of circulating cells that will metastasize somewhere else,  Waiting until there is progression could be worrisome since it can get much worse very quickly. Regardless of what we do the cancer will eventually progress, this isn't curative just a hope for more quality time.

When I originally made my decision to move forward with the surgery if there was no progression; it was at the end of going to the vet almost weekly, giving multiple medications, tracking changes in her eating/energy levels like a hawk.  over the past nearly 8 weeks we haven't had anything except the xray visit.  The time hasn't been perfect, but she has so much more energy not being on any chemo/drugs (which she seemed to handle like a champ, no vomiting or anything) it's just been us being in the moment, not thinking about the future (which can I say is a miracle for me, I practically live in the future).  The thought of figuring out the details to get us to San Diego and spending another 5k on a "maybe" is exhausting to even think about, but I also want to do everything I can to help Ellie. I won't go into crippling debt and I work remotely so it's very possible to do, but is it the right thing to do? 

Here's Ellie on our "Morning River Vibes" outings that we do multiple times a week currently.

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I have been tracking Ellie's progress (and my mental health, haha) on a blog if you're interested in what it's been like from diagnosis onwards: https://ellbell.....pawds.com/

Virginia







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18 July 2023 - 8:07 pm
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First of all and as always, seeing pictures of Ellie always puts a huge grin on my face.  She is a lovely gal with aich a  a unique look....beautiful coloring and beautiful  face.  Always has such a smoocha face🥰🥰

Please know  one thing for sure.  You have already done more to keep Ellie healthy  and fit as possible with this crap disease  than many are able to do

Obviously  none of us can tell you what to do.  I can only reflect back to you what I "hear" or "feel" you are saying.m I know you felt like maybe you  would have somewhat of a clear path forward depending on whether the mets remained stable, or grew, etc 

 

I also know, based on what you've said, that Ellie and you are having  a wonderful time living life to the fullest, Vet free, worry free, just living in the moment.  And goodness knows, living  in the NOW is the vital lesson of this crazy journey that oir dogs teach us..

    it's just been us being in the moment, not thinking about the future (which can I say is a miracle for me, I practically live in the future).  

I guess the only FWIW thing I would say is that some of these "clinical trials",  trial vaccines, etc just aren't  getting the results projected. That's very much a generalization on my part and just a "sense" from what I've seen here.

The only other FWIW is that, no matter  what path any of us ever take, it seems we always  find a way to second guess ourselves,  fill our minds with wudda', shudda', etc. Guess it boils down ton which path would Ellie want you to take. 

One thing for certain Whitney, and I mean this from the bottom of my heart, Ellie is so lucky to have you as her hooman.♥️♥️

((((((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 England
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19 July 2023 - 6:02 am
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Ellie looks so happy!  

My only thought on the decision making process is, if you had previously decided you wanted to go forward with the study and change your mind now, do you think you will regret it if Ellie's prognosis changes?  There isn't really a right or wrong answer, just what you think you can live with.

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19 July 2023 - 7:35 am
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Hi Whitney, thanks for sharing the wonderful pictures of your lovely Ellie. I just wanted to add a few thoughts, we are going through this journey with our rotti Kaya on a very similar timeframe to you and Ellie, Kaya had her amputation on April 12, and is just about to finish her fourth carboplatin this week.
our priority is to keep Kaya as well as we can so that she can have a great quality of life for however, long she has left. We have therefore decided not to have any scans to see if there are mets on her lungs.  Once her carboplatin finishes this week, we plan no more vet visits until such a time when they are needed. We are focusing on Kaya having as much fun and happy days as we possibly can, we are taking her away for weekends by the beach as many times as we can, she is going fishing with my husband again which they both love, we will not both leave her and go on any holiday or trip without her and are just focusing on enjoying every minute of the time we have with her.

it looks like you and Ellie are having a great time together, I think with this awful disease that is all we can hope for, we all know the inevitable end to this, but we can make the time we have as precious and happy as we can, and I think that is the best that we can do for our fur babies.

Pennsylvania


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19 July 2023 - 8:27 am
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Hi Whitney - Such beautiful photos of your girl (love, love, love!), thank you sooo much for sharing. You've done so much for her - the best you can, as you were once kind enough to remind me - and she's such a lucky pup to have you.sp_hearticon2

I kind of wonder if you already have your answer? The contrast between the way you paint your recent, beautiful time together and the demeanor of the time in treatment, and the exhausting prospect of more treatment going forward is so striking that I can feel it in my own body too as I read your words. Perhaps your body is giving you your answer? This open hearted, open-ended time together just wading in the river and living your best lives seems to be the choice closest to your heart - and maybe Ellie's too?

Thing is, there's this ethos in our culture about fighting cancer and going to all ends to battle it, and I think that's probably good to an extent, but I think sometimes it can wring us dry and steal the remaining time we have with our loved ones (perhaps even ourselves?) furry or otherwise.

Of course - know whatever you choose, this community is with you. You know best for you and your pup. Sending you both love and river vibes from a city of rivers -sp_hearticon2

Natalie & Juno (aka June)

The Rainbow Bridge



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19 July 2023 - 10:07 am
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Whitney it's so good to see Ellie out there loving life in the sunshine. What a very lucky girl she is.

Soooo about that big decision. Here's my thoughts: Right now you really are doing everything possible within your current routine to give Ellie the best medicine for longevity. That medicine is the daily adventures, the 24/7 companionship, and always being in tune with what she needs and wants. You can always feel good about that.

To pursue the MIMIC treatment means shaking up that routine. If you do, how will Ellie adapt to the changes? Is she easygoing that way? And how will you adapt? If the logistics won't throw you off, or cause you stress, chances are you will both do well and sail through the temporary shakeup. You can come back here and get back to your regular daily activities, and put that cancer behind you.

There will always be "what ifs" when it comes to this disease. All the money, treatments, and time in the world won't get rid of our human need to look back and question every decision we make at a time like this. The question is, how many "what ifs" can you live with when all is said and done? 

I do agree that the faster you can decide, the better. Of course I can't tell you what exactly to do, or not do. But what I can tell you is that while I did have a few regrets about how we handled Jerry's cancer, all these years later those few regrets don't outweigh the other decisions we made to live life as best we could with the time we had left. 

Hope this helps.

Virginia







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19 July 2023 - 10:20 am
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      all these years later those few regrets don't outweigh the other decisions we made to live life as best we could with the time we had left. 

  

I loved what you said as well as what everyone else said. 

Every thought was so heartfelt and given with such love to support Whitney and Ellie.

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!

Colorado
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20 July 2023 - 12:09 pm
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seeing pictures of Ellie always puts a huge grin on my face.  She is a lovely gal with aich a  a unique look....beautiful coloring and beautiful  face.  Always has such a smoocha face🥰🥰

  

Thank you!! I agree! haha, I'm not sure if I've shared on here but Ellie's face markings keep evolving with time sort of like how a grey horse will be born almost black, but then will progressively get lighter and lighter.  Ellie's face is doing the same thing.  You can see below just how much has changed, and she still is getting lighter, now the top of her head is getting the dusty brown hue, I just love it!!

View post on imgur.com

 

View post on imgur.com

 

There isn't really a right or wrong answer, just what you think you can live with.

aint that the truth.  There will be "what ifs" either way, but  I do think I would rather have the "what if it was a waste of money" versus "what if it could have helped"

I kind of wonder if you already have your answer? The contrast between the way you paint your recent, beautiful time together and the demeanor of the time in treatment, and the exhausting prospect of more treatment going forward is so striking that I can feel it in my own body too as I read your words.

Thank you so much for sharing this!  When I first read it, I was like she's absolutely correct. but then as I sat with it for a while, I realized the reasoning for it was because our current day to day is 100% in my comfort zone, it's routine and not hard at all.  Which is not a bad thing, but going outside my comfort zone isn't bad either.  I started thinking about what I wanted to accomplish with Ellie regardless of getting this surgery and at the top of that list is to travel more... which would be well outside my comfort zone.  Then I thought about road tripping to San Diego, I started a My Map on Google (so much fun to play around with if you haven't tried) and looked at possible routes I could take and realized to get there I would have to go through 4 corners, which Ellie has never been to, I would be basically passing by Horseshoe bend and the grand canyon which neither of us has been to, Joshua Tree, and then Ellie has never been to an ocean.  Slowly it switched from a stressful drive to get a surgery that might not work to a really fun adventure that also has a surgery thrown in in the middle.  If it helps, bonus, if not I will still have those priceless memories that I might not otherwise have.  

it looks like you and Ellie are having a great time together, I think with this awful disease that is all we can hope for, we all know the inevitable end to this, but we can make the time we have as precious and happy as we can, and I think that is the best that we can do for our fur babies.

I 100% agree!!!

You can come back here and get back to your regular daily activities, and put that cancer behind you.

That was the original plan, just taking the 1st step is so scary, but I think I'm ready to. I have figured out decent route and will take about 3 days to get out there so we have time to stop along the way and hopefully not just completely melt.

I honestly can't decide if this will help or not, and how would I know if it helps or not?  I don't think I can.  but I looked back over my notes when I first spoke to Dr. Thomson about the trial, and yes they are doing the surgery to hopefully help dogs with existing lung mets, but the trial goes much farther than that.  with the diseased tissue they are removing they are working on developing a blood test that will be able to identify that lung nodules are present well before they are ever visible- one of the bigger issues is mets are really hard to see on x ray, and can often be missed.  They are also studying why the heck lungs are so susceptible to metastasis. and if there are specific genes to specialize the medicine for cancer. I think one of the hardest parts of this whole situation is feeling like a guinea pig, but if I change my perspective and see that what I'm doing now will benefit future dogs and their pet parents to not be in this stressful of a situation, that feels pretty good.  Ellie will only be a small part of it, but it's a legacy nonetheless. And in doing so I'm not putting Ellie through months of being uncomfortable, it will be 2 days of being drugged up and then we'll be done done. I think I will take a page out of Louise's book and not plan on getting any scans (well she has to get one 2 and 6 months post op, but after that none!)

I honestly might see if it's possible for me to leave on Saturday, which feels insane, but it's already been a month since the xrays with no change were taken so time is of the essence. but if that doesn't work I will do next Saturday.

It's the weird things that pop in your head when making decisions like these.  One thing that keeps coming up for me is I hate that Ellie will have to get shaved again (and even more than the amputation since it will have to be on both side of her chest).  Her being a double coated breed I know it's not good for her coat, on top of that where they re-shaved for skin biopsies has barely grown any hair back (which they warn can happen if you shave double coated dogs). Speaking of- can I use normal sunscreen on dogs or does it have to be a dog specific one? I should probably make sure it have that on hand.

Virginia







Member Since:
22 February 2013
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20 July 2023 - 12:35 pm
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As you know, I have to comment on the pictures first right off the bat!  I LOOOOOOVE HER  PICTURES!!!  And that puppy picture CUTE!  CUTE!!  CUTE!!!  Interesri g how her coloring has changed.  All her seasons of color are beautiful.   She's such a unique dog in so many ways.  And her Mom is unique  too....all in a good way!!

You have a plan, you've processed your thoughts, your reasons, etc.  Go for it with confidence and with  zesr for the joy of the adventure  you and Ellie are embarking  on!!

Whatever happens, Ellie has already cemented  her legacy (ever expanding legacy) here with us.  Big dogs handle life on three perfectly.  And the special bond you two have is part of the legacy package too.

Now one  thing you know you MUST do....pictures!!  We have to have lots of pictures!!!!.  We'll be watching  for those and for your updates.

E joy the journey, be safe and know we are traveling  by your side with pawsitive energy♥️

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!

Pennsylvania


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20 July 2023 - 12:49 pm
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...but then as I sat with it for a while, I realized the reasoning for it was because our current day to day is 100% in my comfort zone, it's routine and not hard at all.  Which is not a bad thing, but going outside my comfort zone isn't bad either.  I started thinking about what I wanted to accomplish with Ellie regardless of getting this surgery and at the top of that list is to travel more... which would be well outside my comfort zone.  Then I thought about road tripping to San Diego...

Now that sounds cool.💥💥💥 And sooooo much fun. I'm glad that while you seemed to connect with what I said you sat with it, and didn't leave it there, and definitely figured out what was *really* in your gut. I'm reminded that it's always risky giving someone else your own observations - 'cause you can only see (very limitedly) from the outside and can't really see the inner workings behind it all. Glad it was at least good raw material for your own thinking - but so glad you stuck it out to your own conclusions!!

And the conclusion you came to makes tons of sense and sounds really, really exciting...even if, as you say, it's beyond your comfort zone. But, heck. You're going outside that zone on your own and Ellie's terms. Brava. So excited for your road trip. Keep us posted of course!!sp_hearticon2

Edit: I was typing while Sally was typing and so I didn't see her response before posting - all that to say I second the request for PICS!!

Natalie & Juno (aka June)

New England
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20 July 2023 - 1:37 pm
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That sounds like a fun trip you have planned - well, as fun as a trip for surgery can be. Take lots of photos of your adventures for us!

My quad-pawd has changed color similar to how Ellie has.  I adopted her at 5 months and she was probably 90% black.  By age 1 she had lost probably 10% of her black.  The rate of change has slowed, but it's continued.  

Livermore, CA




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20 July 2023 - 4:04 pm
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You have received a lot of good input on your thought process - I don't have anything to add except this:

I recommend you write down your thought process and your final decision...you could probably just copy and paste some of the replies in this thread.  When I was making a tough decision on treating Maggie's second cancer I knew I would second guess myself eventually.  I ultimately decided to stop aggressive/invasive treatment and went the palliative route.  I wrote down my thought process and why I made the decisions I did.  Maggie passed 3 months later and pretty soon those doubts started....maybe, what if, I should have..

I was able to look back at my notes and be reassured that I had made the best decision for Maggie.

 

My Elly says hi to your beautiful Ellie!

 

Karen and the Spirit Pug Girls and Boy

Tri-pug Maggie survived a 4.5 year mast cell cancer battle only to be lost to oral melanoma.

1999 to 2010

 

              Maggie's Story                  Amputation and Chemo

The Rainbow Bridge



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20 July 2023 - 5:00 pm
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Love those growing up pics of puppy Ellie!

I thought I read somewhere that nature makes dogs darker when they're young as a way to protect / disguise them from predators. I know our Wyatt Ray started out really dark too.

You sound so much more confident today and now you have a plan, which is awesome. Yes she will be a "science dog" in her own right and helping others too, what a gift!

We really look forward to following along with that road trip.

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