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Latest update for Coco
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Member Since:
28 December 2021
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16
1 June 2022 - 4:45 pm
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Just a followup. The vet reached back out to me and the "off label" drug is Trametinib look it up. It is a very interesting study or drug used specifically for histiocytic sarcoma. Although the cost is nearly 400 a month and they have to meet certain criteria. I think I may try a month or two in all honesty to see if her tumor shrinks and maybe the information could be useful to other members now or in the future. Unfortunately at some point I am gonna have to draw the line financially. She has had a great life, Im just blessed I was able to give her that opportunity .  Many are unable to do the same. I will keep you posted if that is the route I take. I am also gonna add turkey tail to the mix

The Rainbow Bridge


Member Since:
25 April 2007
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1 June 2022 - 5:11 pm
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Hey thanks for letting us know. This is REALLY interesting stuff. I've never heard of Trametinib before, but it's along the same lines as Palladia right? And based on the studies that are happening with it, my guess is vets see some real promise there for dogs with certain cancers. It looks like both Tufts and UW Wisconsin (go Badgers!) are working with it in clinical trials. See:

Tufts: Pilot study of a MEK inhibitor in dogs with histiocytic sarcoma

UW Wisconsin Oncology Clinical Trials

(can't tell which one specifically is being used with this med but my guess is that it's the 1st one? They don't name the exact medication but it sounds like this could be it).

Info about Trametinib in human medicine

I love that Trametinib been used for a long time in people, instead of vice versa. With a track record like that, why couldn't it work just as well in dogs? 

Not cheap for sure, I get it. Coco is so fortunate to have you for a dad. Yeah if you're able to do it, we can all learn from the experience and hopefully it will give the results we all want: go away cancer!

Member Since:
28 December 2021
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18
1 June 2022 - 7:00 pm
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Mekinist seems to be the brand name and is FDA approved. What I dont understand is why wouldnt they allow that treatment on the first go around if its specifically designed for this type of cancer. Why waste my and Coco's time and money on a particular drug if it doesnt have a high success rate statistically speaking. Why did I have to spend tons of money on that. Why couldnt I have had the  choice on which drug may have seemingly been a better choice for this specific type of cancer. Realistically speaking its the same cost as the lomustaine treatments. 300 every 3 weeks for lomustaine and 375 a month for the trial drug. Sometimes you gotta wonder if its all a money grab. Very frustrating. (Rant over) I was talking it over with a very good friend of mine who has had his share of heartache when it comes to his dogs and trust me he spares no expense on them either. He has a very logical and realistic expectation and understands the situation and really helps me more than he knows. As we talked I feel like I need to at least try this trial not only for myself, but I feel somehow this will help somebody else and knowing that helps me with giving it a try. 

Member Since:
28 December 2021
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1 June 2022 - 7:06 pm
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Also, would you hold off on The turkey tail? Additionally, the meds are fairly reasonable at 85 for a month. Its the bloodwork and other thing that add the bill up. If they could just find away to lower those costs would be great

Virginia




Member Since:
22 February 2013
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1 June 2022 - 8:28 pm
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You are not ranting and your questions are valid.  It would be interesting  to hear the response uou gt.  So let us know okay?

You have a wonderful and wise friend.   Trying this treatment for Coco (and for you) and sharing this part of the path forward will indeed help others. And we are all sending pawsitive energy focusing on it helping Coco too!

Hugs

Sally and Alumni Happy Hannah and Merry Myrtle and Frankie too!

PS.  No insight as to whether  you can use the TurkeyTail at the same time.  Hopefully  your Vet van address.that.  Maybe you could do the TurkeyTail until you start the Mekinist.  Anyway, check with Vet

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!

The Rainbow Bridge


Member Since:
25 April 2007
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2 June 2022 - 12:21 pm
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Oh my gosh rant as much as you want, that's why these forums are here. We get it. This can be a frustrating, emotional ride. Sometimes you just gotta let loose and we are always your sounding board for that.

An oncologist once told us that their first choice of treatment is usually the meds that they have the most experience and success rates using on patients. Then they move to the next one in the toolbox if the first doesn't work. So, I think your oncologist was just following the usual protocol. I think they are pretty open minded based on what you've described with your interactions, not all are so willing to address things like turkey tail come up in the convo. 

As for whether or not you should you start the supplements, I would ask the onco vet just to be sure. A lot of times they don't want to add anything new into the treatment mix until they know it's working and not giving side effects. Ask just in case.

Raleigh, NC
Member Since:
29 April 2013
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4 June 2022 - 7:38 am
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From the anecdotal evidence I have, yes I think it helped.  HSA is so aggressive.  I had not encountered a dog who had HSA in a limb before to recover from amputation before it moved to the liver and/or spleen. And started bleeding.  HSA is the most aggressive cancer out there.  

Tex had a very strong nine months.  We went to the park every day, he had tons of energy.  We found the new tumor because I recognized the symptoms of a bleed.  He was not in any decline at all but I had already lost my beloved Scottie Otis to a spleen bleed on the way to the vet, I just couldn't do that again.

I

Member Since:
28 December 2021
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6 June 2022 - 1:23 pm
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Thank you for the response. Sorry to hear about Tex. Are you referring to the turkey tail or the trametinib?

Member Since:
28 December 2021
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6 June 2022 - 6:31 pm
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Don't tell her she has cancer. Coco doing her thing.

Shes fiersome

Virginia




Member Since:
22 February 2013
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6 June 2022 - 8:25 pm
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An absolutely  delightful video of Coco thoroughly  enjoying being Coco😁   This is a perfect example of the blss of veing dog.👍  No worries, no thoughts of tomorrows theword "disease" means nothing to them. That's how dogs win every second of every day. Coco is showing she is Champ at winning!

I keep scrolling back up to look at this video and each time my smile gets bigger and bigger!  So much "pep in her step" and wag in her tail .....this is a very happy girl😎

More video..more, more more!!!!

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!

The Rainbow Bridge


Member Since:
25 April 2007
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26
6 June 2022 - 10:24 pm
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Oh she cracks me up! Yes she is a force of nature and totally unstoppable! Love seeing her joyful self enjoying the day, we should all follow Coco's lead.

Member Since:
14 May 2022
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7 June 2022 - 8:20 am
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Oh my! That video gives me SO many warm fuzzies!!! Look at her...the happiest, bestest girl!!! I just adore her care free attitude...just Coco being Coco! Hope my Bailey girl experiences every day she has left, with the same amount of joy and sass!!! ❤🐾

Member Since:
28 December 2021
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7 June 2022 - 3:06 pm
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Thanks all. She certainly is a special lady. With any luck she starts her trial tablets next week.  The vet called today asking how she was doing, so far so good i told her. She didnt feel giving her the turkey tail at this point is going to harm anything. I did ask her how long she may have and her response is there really is no telling with out knowing if it has spread beyond where the tumor on the lymph node was without needle aspirations of the liver and spleen etc. She agrees at this point its not really worth the prodding as it does not change treatment. She stated that they have only had one other dog with the trial tablet and she said the had for lack of better words fairly fair results. I have her on her rimadyl which she has been on for 3yrs. Just put her on the gabepentin she is prescribed up to 800mg a day she suggested starting with the least amount as possible so I started her on 100 and had good results, but 200 is where we are at now and seems to be the sweet spot for now. She did also say labs seem to in her experience be very happy an active until that one day where they stop eating and have had enough. Lets hope that day is many days from now. I will continue to try to keep you guys updated on how the trial tabs work. As I explained to the vet at this point I am not only doing this for her quality of and myself, but the many others that may stumble across my post and at least know about the trial drug exist and maybe some real time results. Stay tuned.

P.S. You have any tips on getting a urine sample. She is very picky when using the restroom. She wont even go when on a leash. She lives on a farm and has full roam to go wherever she pleases which makes a urine collection near impossible. Stool sample no problem

Virginia




Member Since:
22 February 2013
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7 June 2022 - 3:31 pm
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Your Vet sounds wonderful!!!  Clearly she's tuned into you, to Coco and your bond with Coco.  It really makes nooo sense to keep prodding and poking when, whatever the outcome, it doesn't  change the treatment plan.  And the plan just may fet "good" results with Coco!

As far as "how long"?    No one knows and that's  a fact!  What we do know os Coco  could care less about days on the calendar.  As you already know, she is thoroughly enjoying living in the moment and veing spoiled veyond belief!  As far as Coco  knows a "calendar" is made up of endless moments that  flow from one glorious moment of being loved and living life to the fullest to the to the next glorious moment.......

Thanks for the update and for sharing  Coco 's  continuing journey.  She, and you, have already made a HIUGE impact on this community.  

With gratitude, 

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!

The Rainbow Bridge


Member Since:
25 April 2007
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30
8 June 2022 - 11:54 am
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I love your vet! That's some spot on insight about what kinds of things to expect. 

As I explained to the vet at this point I am not only doing this for her quality of and myself, but the many others that may stumble across my post and at least know about the trial drug exist and maybe some real time results. 

YES! We are super grateful for your sharing the experience! Thank you.

P.S. You have any tips on getting a urine sample.

Have you tried getting her to go on top of a pie plate or some container like that? I've only had boy dogs so I'm not much help for females.

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