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Re: Max/hemangio...he's gone [Re: Mary Jane] #214495
02/22/12 02:41 AM
02/22/12 02:41 AM
Joined: Jan 2010
Posts: 19,487
Northern CA
MaxaLisa Offline OP

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MaxaLisa  Offline OP

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Considering the extent of the cancer - it was, well, uh, everywhere, this result is pretty damning for the validity of this test.

They also need to get their act together so that owners don't get these letters when they no longer have a dog to retest...


MaxaL (aka LisaT)

Jazmine, mini-mix, 10/18/2011
Max-n-Indy
Max, 5/2001-2/2012, RIP my partner, my Regal Boy
Indy, 5/1997-10/2010, RIP my friend, my teacher

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Re: Max/hemangio...he's gone [Re: MaxaLisa] #214507
02/22/12 03:12 AM
02/22/12 03:12 AM
Joined: Feb 2010
Posts: 4,067
Syracuse, NY
DancingCavy Offline

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DancingCavy  Offline

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I would definitely pass on the information you have regarding the validity of the test. They gotta know. frown


~Jamie~
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Re: Max/hemangio...he's gone [Re: DancingCavy] #214511
02/22/12 03:22 AM
02/22/12 03:22 AM
Joined: Jan 2010
Posts: 19,487
Northern CA
MaxaLisa Offline OP

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MaxaLisa  Offline OP

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Northern CA
They were informed by phone, but now that I have a copy of the u/s report, I will send that to them.

I was really hoping that this test would be better than it's turning out to be - we need something to help our dogs frown


MaxaL (aka LisaT)

Jazmine, mini-mix, 10/18/2011
Max-n-Indy
Max, 5/2001-2/2012, RIP my partner, my Regal Boy
Indy, 5/1997-10/2010, RIP my friend, my teacher

Health Index
K9 TBD info and Tick List Links
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Re: Max/hemangio...he's gone [Re: DancingCavy] #214512
02/22/12 03:26 AM
02/22/12 03:26 AM
Joined: Feb 2010
Posts: 2,174
Colorado
Kris Offline
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Kris  Offline
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Colorado
Unbelievable... That is just unbelievable... I stopped by just to say Hi and then I read this. How could a test be so wrong??? I'm sorry Lisa - that must have been so hard to hear. We're thinking of you... hugging


Kris
~~~~~~~~~~~~~~~~~~~~~~~~
Samson, GSD, 10/13/07
Annabel, Keeshond, 4/21/11
Petie, Toy Poodle, 5/5/07
Kitties: Meezer, Bob, Mia and Dewey
Re: Max/hemangio...he's gone [Re: Kris] #214513
02/22/12 03:30 AM
02/22/12 03:30 AM
Joined: Jan 2010
Posts: 19,487
Northern CA
MaxaLisa Offline OP

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MaxaLisa  Offline OP

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Northern CA
Something else, isn't it?

If it was just Max and outlier, I would think that it was something in his protocol that affected the test.

I dunno. I am just sad and angry.


MaxaL (aka LisaT)

Jazmine, mini-mix, 10/18/2011
Max-n-Indy
Max, 5/2001-2/2012, RIP my partner, my Regal Boy
Indy, 5/1997-10/2010, RIP my friend, my teacher

Health Index
K9 TBD info and Tick List Links
http://www.rabieschallengefund.org/
Re: Max/hemangio...he's gone [Re: MaxaLisa] #214517
02/22/12 03:46 AM
02/22/12 03:46 AM
Joined: Jan 2010
Posts: 8,846
Wisconsin
Wisc.Tiger_Val Offline
Member First - Owner Second "The Watcher"
Wisc.Tiger_Val  Offline
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Joined: Jan 2010
Posts: 8,846
Wisconsin
Lisa, I think this a perfect example to treat the dog not the test. If you would have listened to all of the tests, I am sure Max would have been goon sooner.

I wonder about some of these tests. The allergy testing can be hit and miss, test for other things can have so many false readings. Is it worth what we are spending, would we be better off treating what we see.


Val da Tiger

Fuzzybutt the cat.
Neilla the Big White puppy.

RIP Cheyenne - AKA: Digger, CheyChey Girl, Cheyenne Large and In charge. 2/16/02 - 2/27/16
RIP Raya - AKA: Raz-a, Ray a Sunshine, RayBestos, the little one, Silly Girl. 9/21/05 - 6/27/14
RIP Lakota - AKA: Bubba, Big Boy, BooBoo (the other part of the Binky and BooBoo team). 1/19/03-9/19/2011
RIP DeeDee - AKA: DD Poo, Little Bit, Binky (part of the Binky and Booboo team) 6/23/02-6/20/11
Re: Max/hemangio...he's gone [Re: MaxaLisa] #214522
02/22/12 04:10 AM
02/22/12 04:10 AM
Joined: Feb 2010
Posts: 4,939
Ohio
PositiveDog Online coffee
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PositiveDog  Online Coffee
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Ohio
Oh, Lisa. That is beyond sad. I am upset that you had to read that.

I am so sorry.

My first inclination is to email them, but I will hold off until you say that is OK. I would not give your name or Max's unless you approve, but my opinion of their record keeping and heartlessness. Let me know if you prefer I stay out of it.

So, so sorry. teary


Bonnie

With approval of my friends:

SamCat, 03/2011
Bennie the 12 1/2% GSD 02/2013

Seiko, Solo, Sophie, Skye and Buddy - bridge dogs who taught me so much
Re: Max/hemangio...he's gone [Re: PositiveDog] #214529
02/22/12 07:49 AM
02/22/12 07:49 AM
Joined: Feb 2010
Posts: 2,758
M
middleofnowhere Online content
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I'm sorry that the sad news didn't register with the system appropriately. Sometimes the "word" doesn't get all the way through the system soon enough to avoid a response that is less sensitive. That is sad and very regretable when it causes someone anguish. The information that their tests did not detect the cancer is important for them to know. The good thing about the response is that it makes it clear that the tests missed this one in a big way and that the verbal communication didn't make it through the system.

Part of loss seems to be that nothing works right for quite a while. I hope the next "thing" is one that brings back happy memories for you, Lisa.

Re: Max/hemangio...he's gone [Re: middleofnowhere] #214532
02/22/12 08:28 AM
02/22/12 08:28 AM
Joined: May 2010
Posts: 8,875
Queensland. Australia
bianca Offline
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bianca  Offline
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Queensland. Australia
hugging I am so sorry Lisa.


Molly Moo (aka The Piranha, 4 legged mouth) GSD (31/10/09)
Cooper GSD (The Gremlin) 19/10/11
Texas - Tabby cat (Feb 1996-2013) Run free sweet Teppie
Paris - Tabby cat (Feb 1996-2013) Run free my beautiful girl.
Re: Max/hemangio...he's gone [Re: bianca] #214540
02/22/12 10:09 AM
02/22/12 10:09 AM
Joined: Jan 2010
Posts: 19,487
Northern CA
MaxaLisa Offline OP

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MaxaLisa  Offline OP

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Northern CA
Thank you bianca hugging

middle, yes, one hand wasn't communicating with the other hand. And I was sure that this value should reach in the "active cancer" range, so, I hadn't thought about it before, but that written interpretation is good to know, exactly what they would have said to me.

Bonnie, thank you for your offer. I just sent this email:

.....[personal info deleted] I had a GSD named Max that was included in your study.

I'm not sure if I spoke with you on the phone sometime around the 8th of this month, but I spoke with someone from VDI just after I had to euthanize my boy for significant cancer that showed up on the abdominal u/s.

In spite of this, when I received his final VDI results in the mail today, which showed slightly elevated TK results, the letter cautioned me not to be overly concerned with the result and to retest in 60 days. Well, such cautions really don't help when I have a very dead dog that is not able to be retested.

I understand that this letter was a mistake and somehow slipped through the cracks. However, when you start a study with such high risk cancers, and owners devastated by the lost of their cherished pets, you also accept responsibility to handle these matters with appropriate sensitivity. So, yes, the letter was upsetting :-(

I do have a copy of the ultrasound report that I'd like to pass along, if you are interested, and some notes and questions about his drug regimen. I don't know if you are the right person to communicate with about this?



Val, you are right about the tests. That's also why I didn't run further antibody tests to look for "things" last summer. After I found that he had low immune markers, it's very likely even what should have been a positive test would not have registered. I really think that choosing what to test for, and then interpreting and applying those results is not only an art form, but a lot of luck.


MaxaL (aka LisaT)

Jazmine, mini-mix, 10/18/2011
Max-n-Indy
Max, 5/2001-2/2012, RIP my partner, my Regal Boy
Indy, 5/1997-10/2010, RIP my friend, my teacher

Health Index
K9 TBD info and Tick List Links
http://www.rabieschallengefund.org/
Re: Max/hemangio...he's gone [Re: MaxaLisa] #214568
02/22/12 02:21 PM
02/22/12 02:21 PM
Joined: Mar 2010
Posts: 1,529
Tallahassee, FL
Natalie559 Offline
Veteran
Natalie559  Offline
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Posts: 1,529
Tallahassee, FL
Hang in there Lisa, we are all thinking of you and wishing you the best during this difficult time.


Natalie

enjoying life with Penny 6/04 & Blaze 11/12
while Sasha 1/05-11/12 watches over us

Swing Sets By Design
Read Allen Carr's The Easy Way to Quit Smoking
Re: Max/hemangio...he's gone [Re: Natalie559] #214603
02/22/12 04:43 PM
02/22/12 04:43 PM
Joined: Jan 2010
Posts: 19,487
Northern CA
MaxaLisa Offline OP

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MaxaLisa  Offline OP

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Northern CA
Thank you natalie, I appreciate you checking in.

I got an email from VDI this morning, and, as I expected, they are very sorry for the miscommunication. He explained how the goof up happened, and it's as we would expect, and promised to tighten things up so that it doesn't happen again. I guess that letter just upset me more than I thought it would have.

I will email him info later. He probabaly thinks he has all the drug info from the vet, but I'm not sure if they got everything written down. Maybe it doesn't matter.

My dogs often don't test right because of all this alternative care stuff, and I'm used to that. But this test, really failed big time. I want to ask him about the doxy....


MaxaL (aka LisaT)

Jazmine, mini-mix, 10/18/2011
Max-n-Indy
Max, 5/2001-2/2012, RIP my partner, my Regal Boy
Indy, 5/1997-10/2010, RIP my friend, my teacher

Health Index
K9 TBD info and Tick List Links
http://www.rabieschallengefund.org/
Re: Max/hemangio...he's gone [Re: MaxaLisa] #214608
02/22/12 05:03 PM
02/22/12 05:03 PM
Joined: Feb 2010
Posts: 2,745
Mary Jane Offline
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Mary Jane  Offline
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Posts: 2,745
Lisa,

This test failed Max big time and it really gives anyone pause about its utility. It's unbelievably cruel that you have to deal with that kind of error

The 'miscommunication' also raises some concern about linking the right dog with the right lab result.

I'm sorry I just don't remember, was Max on prednisone? They do say that prednisone treatment can lower TK levels, despite malignancy.

MJ

Re: Max/hemangio...he's gone [Re: Mary Jane] #214611
02/22/12 05:17 PM
02/22/12 05:17 PM
Joined: Jan 2010
Posts: 19,487
Northern CA
MaxaLisa Offline OP

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MaxaLisa  Offline OP

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Posts: 19,487
Northern CA
Ugh, I don't even want to think about wrong dog, wrong test result frown

Max was on pred, but 2.5 mg every other day because he was low cortisol. I'm thinking that that is not enough to alter the test significantly, but that is definitely one of my questions. He was 83 lbs until the last week and a half when he shot up to 90. His bloodwork a month earlier showed no residual effects from the pred, that I saw previously.


MaxaL (aka LisaT)

Jazmine, mini-mix, 10/18/2011
Max-n-Indy
Max, 5/2001-2/2012, RIP my partner, my Regal Boy
Indy, 5/1997-10/2010, RIP my friend, my teacher

Health Index
K9 TBD info and Tick List Links
http://www.rabieschallengefund.org/
Re: Max/hemangio...he's gone [Re: MaxaLisa] #214632
02/22/12 08:01 PM
02/22/12 08:01 PM
Joined: Jan 2010
Posts: 4,618
JeanKBBMMMAAN Offline
Rescues Rule Admin
JeanKBBMMMAAN  Offline
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Posts: 4,618
frown Awful stuff.

I went back and looked at the original post - what stage or whatever are they in, in this study? Do they know yet, or is this what they are trying to determine with all the information they are getting? I don't know if any of this will make anyone feel better or worse...but I don't know how these things work.

Quote:
I has been working with Steve Gauthier of Veterinary Diagnostics Institute (VDI) in Simi Valley California and they have provided an opportunity for individuals EVERYWHERE in the United States to participate in this Cancer Research Study!! She got a lot of inquiries from those of you not in California on her first invitation and Steve has opened this opportunity to all in the U.S. Our Canadian friends who are willing to go to the U.S. for the blood draw can participate as well. This laboratory is doing research in the early detection of Lymphoma and Hemangioscarcoma, two of the most common cancers in GSD.

The study assesses the level of the enzyme Thymidine Kinase (TK) in the blood. TK has been shown to correlate with the rapid growth activity of tumor cells. The higher the TK levels, the more advanced and severe the cancer. This study will investigate the ability of the test to detect cancer in the very early, pre-clinical stage.

The researchers are looking for German Shepherd dogs with no history of cancer and at the age of 5 years and above to participate by having their blood drawn. The lab will share the test results with you and maintain your privacy. Pet owners of dogs with high results will be contacted for follow-up testing and advice. There is no cost to the pet owner for running the TK test. The blood would be drawn by your own veterinarian (you may be responsible for a small blood-draw fee from your vet) in a kit provided by the lab with prepaid shipping to the lab.

Anyone who is interested in participating in this should contact Steve Gauthier of VDI directly at gauthiers@vdxinstitute.com (mail to: gauthiers@vdxinstitute.com ). Steve will supply you with the Owner Consent Agreement that you must fill out and submit for each qualifying dog you wish to enter into the study. Once that is returned to VDI, they will provide you with the details involved for sample collection.Iwould like to see us help them out with as many as 150 dogs--you can enroll as many dogs over the age of 5 and get anyone with a GSD to participate. I think that since this is open to all, that the sooner you do this the better your chances of being able to participate.


hugging

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