Sneaky Pie - I'm Terrified

[Guest Tuxsmom]

so confused. Her oncologist is firm with the disseminated histiocytic sarcoma diagnosis. Dr. Couto has looked at the cytology report and her paperwork and says he is not so sure. I just emailed him images from her spleen aspirate to examine.

 

Some facts: On August 21, Sneaky was bitten on the leg by a dog that got onto our fenced property and attacked her when we let her out to pee at 6am. Her blood clotted normally. The wound was kept clean and healed just fine. 10 hours later, a large "bruise" appeared on her upper thigh of that leg. Some other large bruises popped up. They went away in a couple of days. I dismissed it as not urgent.

 

10-12 days later, another round of bruising popped up. Keep in mind Sneaky does NOT have a history of spontaneous bruising. These went away in a few days and again I thought..hmmm..weird. No idea it was urgent.

 

10-12 days later is where this thread picks up with the evet, multiple blood transfusions, etc.

 

I told all of this to the vets, provided pictures, dates. They all dismissed it and said it was just a coincidence. Now I'm not so sure.

 

At the oncologist meeting last night, I again laid out all of the facts. The oncologist was very firm with her insistence that this is indeed histiocytic sarcoma.

 

Dr. Couto says that this is an usual presentation of this disease for a greyhound and that infectious disease with activated macrophages can be diagnosed incorrectly as HS. In fact, he had a greyhound that was supposedly "HS" that was cured with antibiotics.

 

I'm anxiously awaiting Dr. Couto's answer to the spleen aspirate images. He did suggest I go ahead with a bone marrow aspirate to see if the bone marrow is involved...but I'm already $6,000 into this looking at another $2500 in treatments coming up. I always thought I was well prepared financially for an emergency..but wow this one has made me raise that "comfort level" up anther 5 grand.

 

I'm so confused and torn by hope - despair - hope - despair. agh! Has anyone here been through a similar diagnosis?

 

P.S. The oncologist did state that Sneaky was already a "miracle recovery" to have come back from multiple transfusions because her PCV kept dropping after each transfusion.

 

Last night her PCV was up to 25%

[Houndtime]

Wow. What a whirlwind to go through. Negative...positive. Who would know what to think? Keeping you and your girl in good thoughts.

[Rickiesmom]

I hope you are able to get a definitive answer soon, and that antibiotics are the answer.

[tbhounds]

Follow Dr Couto's suggestions--when a little bird whispers in your ear you need to listen. Start with the bone marrow aspirate.

[MP_the4pack]

Maybe GOFUNDME will help with a little bit. If it's a difference between a death sentence or life.....I go for it.

 

Oh, also............do you have Care Credit where you are? For large bills like this Care credit will give a specific amount of time to pay off a bill interest free. The only catch is that if you can't pay it off by the end of that period (sometimes 3 mos, sometimes 6, sometimes 12 mos) then you get WALLOPED! But all you have to do is transfer the balance to another credit card offering a year interest free for transferring money. Most credit cards have that option. I did that a couple of times when VPI insurance wasn't very generous with the claim payout.

 

Care Credit may be just the difference you need for the BM aspirate.

[Batmom]

All due respect, I wouldn't do the aspirate. I'd pretend it's infectious and treat on that basis. Not many dogs respond to ccnu so I wouldn't do that either. Hugs and best luck.

[kudzu]

Have been reading this threading & hoping very much that the diagnosis was incorrect. Had not posted before this because my young girl's outcome was not good. Sneaky Pie's presentation is totally different than Stellaluna, a staghound who was 1/4 Greyhound but mostly Deerhound. She was diagnosed with malignant histiocytosis, a type of disseminated HS, when she was barely 4 years old. She was gone two weeks after the ordeal started. The ordeal is documented way back in the GT archives. There were no bleeding problems. She presented with lumps, lots & lots of lumps. It started with one late one day. Luna also seemed off. Decided I'd call for vet appt first thing the next day, but then other spots popped up & I had a really bad feeling so took her to E-vet. Got the news than that it was most likely so type of cancer but had nothing definitive. By the next morning, when I rushed her to regular vet, the lumps were all over. There were popping up so fast they appeared even while the vets & techs were trying to record the locations. She was also starting to hurt. We went through the worry & upset of trying to get a diagnosis. HS apparently really can look like other things at different stages. We did do one dose of CCNU. Luna responded with most lumps disappearing & other greatly reduced in size, essentially overnight. However, Luna clearly felt even worse. The assumption & hope was that was a side effect of chemo. Two days later all lumps returned & more started appearing. A day later she could barely move. Her pain was awful & things were getting worse. I had to let her go.

 

Nothing in your description of Sweetie Pie reminds me of Luna's condition. This doesn't mean I think the diagnosis is wrong. I know next to nothing about oncology. It's just that HS is definitely not what I would have thought of based on Sweetie Pie's signs & symptoms. For what it's worth, Couto's team at OSU concurred with my girl's diagnosis. Your girl's situation is so different from my Stellaluna that I really do want to believe her diagnosis is wrong. However, disseminated HS & MH are not exactly the same thing, though at a certain point in the disease process the difference seems to blur. The difference in their stories, presentation & the technical differences in diagnosis are why I've kept quiet until now.

 

Money does become an issue. It's horrible to have that factor into your dog's care but it's a reality. Work with Dr Couto & just explain the financial side. He'll understand & help guide you. (I know you already realize this but wanted to say it anyway.) You & Sneaky Pie with continue to be in my thoughts.

[carronstar]

Follow Dr Couto's suggestions--when a little bird whispers in your ear you need to listen. Start with the bone marrow aspirate.

 

 

Maybe GOFUNDME will help with a little bit. If it's a difference between a death sentence or life.....I go for it.

 

Oh, also............do you have Care Credit where you are? For large bills like this Care credit will give a specific amount of time to pay off a bill interest free. The only catch is that if you can't pay it off by the end of that period (sometimes 3 mos, sometimes 6, sometimes 12 mos) then you get WALLOPED! But all you have to do is transfer the balance to another credit card offering a year interest free for transferring money. Most credit cards have that option. I did that a couple of times when VPI insurance wasn't very generous with the claim payout.

 

Care Credit may be just the difference you need for the BM aspirate.

 

Both of these are great suggestions.

 

I would trust Dr. C above all.

 

My last girl had a (thankfully) benign tumor the size of a softball in her spleen, it was removed and I had her for almost 4 more years. I can't say it was affordable but it was more than worth it.

[robinw]

Holy cow! Let me share something with you...my bridge angel greyhound was diagnosed with chondrosarcoma. All of the vets here were sure of the diagnosis. All results were sent to Dr. Couto, who disagreed with the diagnosis. He said that the X-rays were normal and what they thought was cancerous tissue was actually normal lung tissue looking funny against her bones (sorry, I don't remember the exact wording). I sent her to the bridge several years later because of something unrelated (she was already 8.5 when I adopted her).

 

My point is, be optimistic. Good luck.

[Guest Tuxsmom]

Maybe GOFUNDME will help with a little bit. If it's a difference between a death sentence or life.....I go for it.

 

Oh, also............do you have Care Credit where you are? For large bills like this Care credit will give a specific amount of time to pay off a bill interest free. The only catch is that if you can't pay it off by the end of that period (sometimes 3 mos, sometimes 6, sometimes 12 mos) then you get WALLOPED! But all you have to do is transfer the balance to another credit card offering a year interest free for transferring money. Most credit cards have that option. I did that a couple of times when VPI insurance wasn't very generous with the claim payout.

 

Care Credit may be just the difference you need for the BM aspirate.

 

great suggestions oh Care Credit is already a friend of mine! I try to keep 10k open as an emergency source but we have a balance on it due to my husbands huge dental emergency a couple months ago (dental insurance does NOT make major dental affordable for normal people). so part of what I've spent came from Care Credit already. If it comes down to a life or death gotta come up with it, I'll do GOFUNDME. I hate to because *everyone* has expenses...but I have contributed to plenty of GOFUNDME accounts, so I know people do respond to a plea for help

 

All due respect, I wouldn't do the aspirate. I'd pretend it's infectious and treat on that basis. Not many dogs respond to ccnu so I wouldn't do that either. Hugs and best luck.

 

Agreed. I'm not aspirating at this point. Unfortunately, we did do the first treatment of CCNU last night based on the data we had in front of us. Can't take it back now so can only go forward with Dr. Couto's expertise. A BIG problem is that getting records from this place is like pulling teeth. If I had been able to give Dr. Cuoto a complete package of everything...he would have been able to tell me to put on the breaks earlier.

 

His latest email is to request the CBC from last night...as well as medication records from her hospital stay. He says that he has been "bitten in the proverbial rear" by HS diagnosis in greyhounds before. If it were his hound, he would not do CCNU until a diagnosis was definite. Too late for that

 

But here we are....waiting impatiently for records from the vet here. Dr. Couto has been so responsive and replies pretty quickly..a pleasure to work with.

 

Have been reading this threading & hoping very much that the diagnosis was incorrect. Had not posted before this because my young girl's outcome was not good. Sneaky Pie's presentation is totally different than Stellaluna, a staghound who was 1/4 Greyhound but mostly Deerhound. She was diagnosed with malignant histiocytosis, a type of disseminated HS, when she was barely 4 years old. She was gone two weeks after the ordeal started. The ordeal is documented way back in the GT archives. There were no bleeding problems. She presented with lumps, lots & lots of lumps. It started with one late one day. Luna also seemed off...

 

What a horrible experience! So sorry it went so quickly in your case. Your story touches my heart. Yes, there is quite a blur between MH and disseminated HS. The fact sheet I got from the vet even lumped them together. But each one had to explained totally separately from diagnosis to prognosis so I don't even know why they were put together like that.

 

Thank you all...Sneaky is still stable...eating well & drinking, comfortable & quiet...but gets a little bit of a trot going out in the yard when she's taking a pee break

[Guest Tuxsmom]

Follow Dr Couto's suggestions--when a little bird whispers in your ear you need to listen. Start with the bone marrow aspirate.

 

eek...didn't mean to leave you out I'm definitely listening to that nagging suspicion that I've had from the get go...and I'm going to take Dr. Couto's advice. I'm not going to aspirate right now until I hear from him. At this point, I've done whatever damage is to be done and can only go forward...but if Dr. Couto says I really really need to get the aspirate, I'll figure it out.

[bradymom]

So glad Sneaky Pie is resting and eating. You and Sneaky Pie will be in my thoughts and prayers.

 

Wow what an incredible roller coaster ride you have been on.

[robinw]

eek...didn't mean to leave you out I'm definitely listening to that nagging suspicion that I've had from the get go...and I'm going to take Dr. Couto's advice. I'm not going to aspirate right now until I hear from him. At this point, I've done whatever damage is to be done and can only go forward...but if Dr. Couto says I really really need to get the aspirate, I'll figure it out.

He would only say that if he thought it was absolutely necessary, as he advised against it with my own dogs.

[Batmom]

Apologies for being so terse earlier.

 

To me, the question about the aspirate would be, what does it buy me? If the only thing you get is confirmation of whether she does or doesn't have HS, is that important? If she does have it, would you continue with the CCNU? And, if she does NOT have it, what else could she have and what diagnostics would be needed to figure it out? A lot of other diagnostics (and, unless the price has risen significantly, a lot of doses of CCNU) could be done for the price of a bone marrow aspirate. Although, if you are close to a university teaching hospital, you might be able to get it done for less.

 

What I meant to say, less tersely, about CCNU was that, AFAIK, not many dogs respond to it and of those who do, the response is temporary and usually short term. It isn't like the cancers where you can expect to get what we think of as remission; rather, you get a pause and maybe some knockdown of the disease and then at some point it comes roaring back .....

 

As you've already deduced, you wouldn't want to give CCNU if you thought the dog had an infection instead. Bloodwork should help your docs/consultants figure that out and figure out what to do about it.

 

Like some others here, I lost a dog to malignant histiocytosis.

 

And like probably everybody else here, I hope your girl doesn't have any type of histiocytic disease and that she can make a full recovery from whatever strange thing is going on. She is so beautiful, and it is clear you love her.

[Guest Tuxsmom]

Holy cow! Let me share something with you...my bridge angel greyhound was diagnosed with chondrosarcoma. All of the vets here were sure of the diagnosis. All results were sent to Dr. Couto, who disagreed with the diagnosis. He said that the X-rays were normal and what they thought was cancerous tissue was actually normal lung tissue looking funny against her bones (sorry, I don't remember the exact wording). I sent her to the bridge several years later because of something unrelated (she was already 8.5 when I adopted her).

 

My point is, be optimistic. Good luck.

 

I missed this post earlier somehow..so much information going through my head...this gives me hope. It's so hard to think that an oncologist can be wrong. They seem so convincing in person and make it like there is NO room for doubt. I would love nothing more than for Sneaky's story to end up like yours. I will trust in Dr. Couto and I will find another local vet to cooperate if I have to.

 

Thank you

Apologies for being so terse earlier.

 

To me, the question about the aspirate would be, what does it buy me? If the only thing you get is confirmation of whether she does or doesn't have HS, is that important? If she does have it, would you continue with the CCNU? And, if she does NOT have it, what else could she have and what diagnostics would be needed to figure it out? A lot of other diagnostics (and, unless the price has risen significantly, a lot of doses of CCNU) could be done for the price of a bone marrow aspirate. Although, if you are close to a university teaching hospital, you might be able to get it done for less.

 

What I meant to say, less tersely, about CCNU was that, AFAIK, not many dogs respond to it and of those who do, the response is temporary and usually short term. It isn't like the cancers where you can expect to get what we think of as remission; rather, you get a pause and maybe some knockdown of the disease and then at some point it comes roaring back .....

 

As you've already deduced, you wouldn't want to give CCNU if you thought the dog had an infection instead. Bloodwork should help your docs/consultants figure that out and figure out what to do about it.

 

Like some others here, I lost a dog to malignant histiocytosis.

 

And like probably everybody else here, I hope your girl doesn't have any type of histiocytic disease and that she can make a full recovery from whatever strange thing is going on. She is so beautiful, and it is clear you love her.

 

Batmom, I didn't think you were terse. I thought you were concise. And believe me, thats appreciated when I have so much information being given to me at once! Thank you Still waiting for Dr. Couto's response.

[macoduck]

Your Sneaky is such a pretty girl.

 

I have no experience with what you are dealing with.

 

In an earlier post you mentioned bruising. File this away just in case: Does your vet have Amicar on hand to control post op bleeding? In my area the price for 5 day dosage went from $60 to $600 due to change in manufacturers. If you cannot find it at the lower price where you are Dr Couto let me substitute with Tranexamic Acid. It comers in a 650mg tablet which a compounding pharmacy can convert to a 500mg liquid for $35.

[Neighsayer]

Glad she is comfortable. Hope you figure it out soon. Can you go ahead and treat for an infection at this point? Try to stay optimistic!

[DesiRayMom]

I'm so sorry you & SneakyPie are going through this. You must be half mad with worry & confusion.

I have no advice to offer but will say that Dr.C consulted on Desi's case when he was in ICU with

clot issues. Regarding my hound's health, I would follow that man into he77.

 

Best wishes to your lovely girl. I so hope this turns out to be treatable.

[CharlieRhea]

Thinking of you both

[teri_d]

Just checking in for an update and so I wanted you to know you were in thoughts and prayers this morning

[3greys2cats]

Wow, so much information, my head would be spinning, I try to trust my gut instinct whenever in doubt, you got so much advice, I have no experience with this disease but wanted to let you know that you are in my prayers and I am hoping that Sneakie Pie continues to stay comfortable, she is beautiful.

[NeylasMom]

Is there a danger to just putting her on the ABs and seeing if she improves?

 

Again, nothing useful to add,?just continued good thoughts. I will say, trust your gut. When Neyla got bone cancer her oncologist refused to actually dx her. The orthopedist had, the radiologist had, Dr. Couto had, I knew she had it before we ever saw a doctor, but because her tumor didn't progress like they expected they would keep bringing up that it could be something else. It was really frustrating and they were wrong. So, just to say, I love specialists, I think they're more than worth their weight in gold, but they're not infallible. So trust your gut and you will do what's right for you and Sneaky Pie, beautiful girl that she is.

[Guest Tuxsmom]

This is from Dr. Couto's last email:

 

_______________________________________________________________________________________________________________________________

In the graphics from the blood count on 9/30 I see what appear to be abnormal (likely neoplastic, but I cannot exclude reactive ones) cells in the monocyte cloud (a color copy of the graphics would be ideal); this is unusual (but possible) in dogs with histiocytic sarcomas, but common in dogs with lymphoma (a more treatable disease) and leukemias (some are not very good to treat). The splenic cytology is consistent with histiocytes, but as I said before, I have seen reactive ones looking this big. The cells in the spleen do not look like lymphoma, so unfortunately, the plot keeps thickening…I do not have a blood chemistry, where I look at the globulins/albumin to see if they suggest infection/inflammation. I wish I could be there to look at her and the blood smears. At this point, I think we need to wait and see how she does after the CCNU. I would have your vets check and make sure that Kepra and CCNU can be used together (lomustine as odd interactions with other anticonvulsants). Please let me know if I can help, and hope the girl does well,

_______________________________________________________________________________________________________________________________

 

I sent him the glob and alb values from her initial evet intake. Unfortunately, Dr Couto is out of the country right now, so this is all email and I have no way to send any samples to him, if that would even be an option? I emailed him back and told him I'm supposed to start antibiotics the day after tomorrow. they chose clindamycin simply because I have it on hand (Sneaky takes it one week a month). But I asked Dr. Couto if he would suggest doxycycline or something else instead in case this is infectious.

 

agh. I'm stuck.

 

One day at a time. One hour at a time. That's all I can do.

 

Thanks greytalkers, you give me a place to vent, worry, ponder, hypothesize, and hope.

 

Oh, her GLOB was 3.3 g/dL and her ALB/GLOB was 0.8 Does anyone know if this indicates infection in a greyhound? It shows "normal" on the chart..but we all know that means nothing to us. lol

Edited October 2, 2015 by Tuxsmom

[MP_the4pack]

I will keep her in my prayers................

[robinw]

Yep, one day at a time

Edited October 2, 2015 by robinw