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Nerve Sheath Tumor- Seeking information- early on in diagnostic process
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27 December 2017 - 12:39 am
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Hey everyone!

My 7 year old Rottie mix has been dealing with a waxing and waning limp for a little over year. We’ve had many many vet visits and sets of X-rays and medication and explanation after explanation. But about two weeks ago she started knuckling on that limb and seems to have limited control of that leg. We of course went to the vet (again). As a nurse, this symptom made me think something nerve related, but I was shocked when they said cancer, nerve Sheath tumor to be exact. My head was spinning with talks of MRIs and amputations and survival rates, possibilities of radiation, etc etc. I made an appointment with the specialists and began my research ( to which I was able to find very little). Not only am I a nurse,but a pediatric oncology nurse at that, so my brain went into overdrive. Needless to say, we met with the specialist and they examined and sent of a specimen for pathology, we are still waiting on results. However, they feel pretty certain that this is it. Nerve Sheath Tumor of the right brachial plexus. I am seeking out anyone who can share their experience with this. Did you amputate? How was your pups lifespan and quality of life following amputation. Did you do radiation therapy? And where? Would you make the same decisions again? Anything anyone has to share would be greatly appreciated. 

The Rainbow Bridge

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27 December 2017 - 7:37 am
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Hi and welcome! 

I wanted to get your first post approved so others can see it but im on my phone now so I’ll return in a bit with done thoughts. Stay tuned for feedback from others in the meantime. 

It's better to hop on three legs than to limp on four.™
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27 December 2017 - 3:09 pm
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Hi, Stellasmommy:

stellasmommy said
Hey everyone!

My 7 year old Rottie mix has been dealing with a waxing and waning limp for a little over year. We’ve had many many vet visits and sets of X-rays and medication and explanation after explanation. But about two weeks ago she started knuckling on that limb and seems to have limited control of that leg. We of course went to the vet (again). As a nurse, this symptom made me think something nerve related, but I was shocked when they said cancer, nerve Sheath tumor to be exact. My head was spinning with talks of MRIs and amputations and survival rates, possibilities of radiation, etc etc. I made an appointment with the specialists and began my research ( to which I was able to find very little). Not only am I a nurse,but a pediatric oncology nurse at that, so my brain went into overdrive. Needless to say, we met with the specialist and they examined and sent of a specimen for pathology, we are still waiting on results. However, they feel pretty certain that this is it. Nerve Sheath Tumor of the right brachial plexus. I am seeking out anyone who can share their experience with this. Did you amputate? How was your pups lifespan and quality of life following amputation. Did you do radiation therapy? And where? Would you make the same decisions again? Anything anyone has to share would be greatly appreciated.   

I am going to be one of your go to people on peripheral nerve sheath tumor in the brachial plexus as it was my boy’s cancer, too (front left).  First off, you may want to look at my blog (see link in my signature), which is not a complete history, but I think will give you some idea of the quality of my boy’s life post amp.  Yes we did amputate. It was also, like your pup, at least a year past initial signs before we had the right diagnosis.  Unfortunately, that meant a few things

  1. Due to late diagnosis the tumor was much larger and a higher stage then is ideal for a longer term post amp prognosis. It was, in fact, very, very large and perilously close to his spine and also wrapped around a rib and destroyed a lymph node. It was Stage 3 of 3 rather because the rib and lymph node equate to local metastases.  Also, most unfortunately, the mass was “messy” and we did not get clean margins. We did not get it all.
  2. On a positive note, because he was a virtual tripod with the intermittent limping and lameness having gone on for so long, he had one of the easiest transitions to getting around on 3 that I think most of us can point to.  Some others have done about as well, but Pofi REALLY bounced back and especially considering size (large, tall, deep chested) and age (which was 11.5). He SAILED into life as a tripawd and he was amazing.  He had a wonderful summer.
  3. I did want to do radiation, but there were some irritating road blocks – the specialists were very worried about lung mets and lymph nodes. Wanted CT scan post amp to determine if there was cause for worry.  Felt it was indeterminate, recommended second CT.  Also, CT scan for this process could not be used for radiation treatment mapping. So I was essentially scared out of just pursuing radiation therapy.  By the time we had done one scan and another 8 weeks later, when he was given the all clear, I was growing loathe to actually put him through the many, many more GA sessions and days in hospital to do radiation treatment.
  4. He was, at that point, seeming to have a tougher time (trachea especially) recovering from the GA.
  5. Our only possible vet hospital for treatment in state does not offer stereotactic radiation. I really wanted to inquire about that in a neighboring state, but we did not make it.
  6. What would I do differently? I wish we had had a better initial consult and an earlier diagnosis so we could amputate sooner.  I would want to alleviate him of that pain and give him a better prognosis with or without radiation.  I also think I wish I had skipped the lung and lymph node CT scan and gone straight for radiation or better yet, traveled to get him stereotactic radiation.

We had 6 months and I treasure them. He walked, he swam, he went to dog park and begged for his Daddy’s beer. He was pain free and was “our boy” again fully, despite the missing limb.  It wasn’t long enough, not nearly, but when is it?  I would also cook him more steaks.  

We did do metronomic chemo and Palladia.  I do think the Palladia may have been slowing the recurrence down, but it did come back in his spine, which was soul crushing and shocked everyone. He bounced back with such vigor, we all started to think he was invincible. 

I hope this helps.  I hope it was not too much, but being a peds onco nurse, I figure you want the details.  Let me know if you have more questions – I will be here for you.  Forums or PM me.

Best thoughts for your pup!  heart

Lisa, Minneapolis

On October 27, 2016, nearly 6 months after amputation, and 18 months since his cancer likely started, we lost Pofi to a recurrence of Soft Tissue Sarcoma in his spine quite suddenly.  His Daddy and I miss him terribly along with his canine sister, Mia, and two feline siblings, Lucia and Cliff.

Blog: Pofi, Peripheral Nerve Sheath Tumor Amputation

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27 December 2017 - 3:26 pm
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Oh, and I can’t believe I forgot to mention this, but I really hope your dog has been prescribed Gabapentin!  When we finally had a tentative diagnosis of the nerve sheath STS, he started Gabapentin (along with Tramadol and Rimadyl) 3 x daily.  I think we started at 200 mg 3x daily and quickly increased to 300 mg 3x daily.  I firmly believe having Gabapentin for 2 weeks before surgery helped tremendously with post amp pain management.  He stayed on that dosage for a few weeks post op and then we reduced in weeks 3 and 4.  

Lisa, Minneapolis

On October 27, 2016, nearly 6 months after amputation, and 18 months since his cancer likely started, we lost Pofi to a recurrence of Soft Tissue Sarcoma in his spine quite suddenly.  His Daddy and I miss him terribly along with his canine sister, Mia, and two feline siblings, Lucia and Cliff.

Blog: Pofi, Peripheral Nerve Sheath Tumor Amputation

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28 December 2017 - 1:08 am
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Thanks so much for sharing your story. I am currently anxiously awaiting pathology and staging, delayed by the holidays, and praying for some good news, even though we have been dealing with the symptoms for as long as we have. We did start on gabapentin after some insistance from me when this new type of limp appeared. My Stella does not show and never has shown overt signs of pain, no whelping or whining, always very stoic, so I think her actually showing real pain that I can see and hear scares me most post-op. I work with amputations all the time, and know how hard they can be on humans, who can out into words everything they are feeling so easily. I am so glad to hear how easily your baby transitioned, especially with the same sort of presenting lameness/bum leg. I am feeling so guilty about not being able to advocate differently for my girl over this last year, I had asked questions about every sort of lameness I could think of. (Ligament, tendon, lime disease, brachial avulsion, etc etc.) this was off of my radar. I have worked with kids with this type of tumor. How did I not know it could happen to dogs too? Hindsight 20/20. I am hopeful that we won’t need radiation, it would be long travels for us, about 6 to 7 hours, but have made some arrangements and plans if we need to. So many ifs still in the equation right now. I am so sorry to hear of your loss, but glad you had that precious time. Look forward to talking to you some more, when I know so more. Thanks again. 

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28 December 2017 - 1:15 am
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Oh, and if you don’t mind me asking, what breed was your Pofi? He looks similar to my girl in build and coloring. She is tall and thin and has very long legs, actually she’s almost all legs.

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28 December 2017 - 7:43 am
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Hi, Stellasmommy:

I never mind talking about Pofi, even the tough stuff. He was an abandoned pup, but was dumped in proximity to several musher yards on the north shore of Lake Superior in MN.  So we always suspected he was a sled dog mix. Likely what is often called an Alaskan Husky mix which often will have some sighthound in the mix.  DNA breed test said he was a lot of Malamute, which makes sense, and then a long line of mixed breeds on the other side.  However, I always considered him a Lurcher because of those legs and speed and his lean physique; he may not have been a first gen sighthound cross, but there was very clearly Saluki or Greyhound in him or both and he had a lot of traits that were very much like Lurcher crosses.  He was tall – 29″ to the shoulders and very, very long. And he was fast and strong and perhaps too stoic; like Stella, he was very understated in showing pain.

We had a lot of red herrings on this journey. I first noticed he was perhaps making just a bit of a grunt when he settled down next to me to sleep and within days of that observation he went out to potty one night and came back furiously obsessed with and licking one toe. He would not go to sleep.  I took him to e-vet at 5 in the morning after neither of us had slept for several hours.  So initially we thought it was a sting. By follow up with my own vet, the licking had led to infection.  And of course, he was now limping.  

I struggle very badly with the length of time it took to diagnose.  It was not for lack of trying or earnest effort and care from my own vets. I did not have a warm fuzzy feeling for the lead vet in the specialty consult, but I did not question when they told me why the ongoing issues did not add up to cancer. I need to write all of this down.  All the vet visits, PT and treatment – I keep thinking maybe it will convince me I did all I could or at least did my best. There are times I know I did and times I am consumed with doubt. But, aside from a moment of being truly incensed when the same specialty hospital, but a different doctor, diagnosed the problem just looking at him and the muscle mass change (which was noted over and over in first consult), I just tried to move forward and concentrate on what was best for him in the now.  I found this place post amp, but the community here really did help me stay focused on him and his quality of life – “Be More Dog .” It was the best advice.

I have heard of this tumor in children – it seems like I have heard of it in the spine. Our dogs were just unfortunate enough to develop it in a place that kept it hidden. I hope Stella’s tumor is lower stage. I think a pain management plan utilizing different modalities, will be critical with both the tumor and the amp. I really, truly believe the discomfort of the amp was dwarfed by the pain the tumor had been causing just prior to amp and it was over soon.  

Very best thoughts for Stella!  Please post a picture soon.

heart

Lisa, Minneapolis

On October 27, 2016, nearly 6 months after amputation, and 18 months since his cancer likely started, we lost Pofi to a recurrence of Soft Tissue Sarcoma in his spine quite suddenly.  His Daddy and I miss him terribly along with his canine sister, Mia, and two feline siblings, Lucia and Cliff.

Blog: Pofi, Peripheral Nerve Sheath Tumor Amputation

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11 January 2018 - 4:58 pm
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We were in a similar boat with our 8 1/2 your old boxer/shep mix Ava who was diagnosed with a nerve sheath tumor in the upper part of her front right leg on 12/14/17.  We too thought it could have been any else but a tumor over the last year and sought answers of a possible small fracture or a pulled muscle or arthritis.  No definitive answers and when she lost the use of her right front leg in November we knew it was much more.   We then took her to a university hospital and had an MRI done and received the news we didn’t want to hear.   She had amputation surgery on 12/21 and was home on 12/23. 

Pre surgery all other scans were clear and we were told the surgery could be curative.  But on 1/3/18 we received news that we didn’t get the margins we had prayed for and that while the surgery was a success it was not curative.   It was devastating at first but we decided not to put her through any more treatments, radiation or scans.  

She too had built up quite a bit of strength in her left front leg to compensate for not being able to use her right front leg over time.   She is no longer in pain and recovered faster than we could have ever anticipated from surgery.  Most importantly her sparkle is back in her eyes.   We want to let her live whatever time she has as happy and pain free as she is now for as long as she can.

I know you all will make the decision based on what is best for Stella and hope that things are going better.  You are not alone!

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28 May 2018 - 5:08 pm
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My now-12 y/o dog Buster was diagnosed with nerve sheath tumor two weeks ago and will have right front leg ampu this Wednesday. It was a real gut punch, I love this dog to bits. He started limping at the end of last summer, and it came on out the blue. Cancer Diagnosis took 8 months. In the fall, his scans revealed a tear in a shoulder tendon, so he had a tendon release surgery. But the surgery didn’t resolve his limp. We did physical therapy and eventually he started putting muscle back on. But about 7-8 weeks ago, there was a sharp reversal in his progress. His limping became profound. Phys therapy stopped working. His deterioration accelerated in terms of discomfort over past month. And then we got the diagnosis after an MRI. As upset as I am that my dog is losing a leg, I now just want it done to alleviate his pain and discomfort, though gabapentin + rimadyl are working pretty well. But then we’ll learn how advanced the cancer was, whether he needs radiation or not. I’m already learning a lot from this website, im sure I’ll learn more.

The Rainbow Bridge

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28 May 2018 - 6:41 pm
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Hello Buster and family, welcome. I’m so glad you found this topic so you could chime in. Do please consider starting a new topic though, so we can better follow along with Buster’s journey.

He’s a very lucky dog to have you being such a great advocate for him. Poor guy has been through a lot! And yes, when that leg comes off he will feel SO much better! We send all our love for a successful surgery and speedy recovery. Please do keep us posted when you get a chance, we are here to help.

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