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Light at the end of the tunnel after Roscoe's amputation
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Member Since:
9 November 2016
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17 December 2016 - 8:16 am
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Hi!

I tapped into this great community looking for answers a couple of months ago but have been too overwhelmed to write anything until now. 

Roscoe's amputation story started almost a year ago in Feb. of 2016. He started limping (very mildly) after he slipped on ice coming down from catching a ball. We figured the limp would go away on it's own. After about a month we took him to the vet. The vet did a manual exam and gave us some carprofen and said he thought it would go away and to just give him the medication if we were going to go on long walks.

A couple months later Roscoe still had the limp so we took him back to the vet and were told the same thing again, mechanically nothing seemed wrong so just give it more time and take it easy. A couple months after that the limp started to get worse, we went to see a different vet who took xrays and did a Lyme test. Xrays showed nothing but he tested positive for Lyme. We thought maybe that was the cause of the limping so started him on a month long course of antibiotics.

2 weeks in with no improvement of the limping our vet suggested we get an MRI at an area vet hospital. This is now Aug. 2016. The MRI showed nothing but what the Dr. (Ortho) thought was tendonitis. She prescribed physical therapy. In addition to the limping, Roscoe had started chewing on his paw. When I pressed the Dr. about this symptom that didn't seem accounted for in her diagnosis, she brought a Neurologist into the mix. The Neurologist suggested we get a second MRI with a few more angles. The Neurologist's diagnosis was peripheral nerve sheath tumor after seeing what appeared to be a thickening of the nerve on the MRI accompanied by his symptoms of a worsening limp and paw chewing.

The only treatment option was amputation for a nerve sheath tumor in this particular location (deep in the shoulder). We were stunned! It just didn't compute. Especially given that his injury seemed to be caused by a fall. We decided to get a second opinion at a different hospital. They eventually came up with the same diagnosis. At this point Roscoe's limp had gotten pretty bad and the muscle atrophy in his arm was severe. He was barely using his arm at this point. We decided to move ahead with the surgery which was scheduled for Nov. 9th.

During surgery prep, Roscoe went into anaphylactic shock when they administered the antibiotics. It was touch and go for a bit but they managed to stabilize his vitals and he pulled through. His surgery then had to be postponed for 3 weeks while his body recovered and we worked our way through 6 different medications they gave us to fight his allergic reaction and the GI distress caused by the medications. FINALLY on Nov. 28th Roscoe underwent a successful amputation of his front right leg.

Recovery has been more challenging than I expected. He has had quite a bit of what I can only think to be phantom limb pain in addition to the more acute pain from movement. The first week post-surgery was pretty rough but the past 2 weeks have seemed a lot better and I am getting glimpses of normalcy again. His staples came out last week and we got the results from pathology which showed they got clean margins on the cancer when they removed his leg. And they did actually find a tumor, which was something I was still questioning in the back of my mind since his limping started with what seemed like an fall related injury.

We will be meeting with an Oncologist next week to go over the pathology results in more detail and hear if they have any further treatment suggestions. I really hope this is the last Dr. appt we have to go to for a while. So, after the whole ordeal it feels like a light is at the end of the tunnel. I know we still have some time yet before Roscoe is fully recovered but I'm looking forward to the day that our lives start to feel normal again!   

On The Road


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17 December 2016 - 8:39 am
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Wow! You and Roscoe have been through so much! Yikes! I'm glad you're both on the road to recovery and are working on a plan to treat the cancer. Kudos to you for being such a good advocate and getting that second opinion. Whenever we have doubts, another perspective is really important to calm our fears.

What is Rosco taking for his pain? Any rehab therapy prescribed yet?

Thanks for joining. Your future posts won't require moderation so post away!

Tripawds Founders Jim and Rene
tripawds.com | tripawds.org | bemoredog.net | triday.pet

Schofield, WI
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17 December 2016 - 8:51 am
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Wow just wow!  What an ordeal you guys have been through!  So glad things are getting better now and Roscoe and you are beginning to see the light again.  Give yourself a huge pat on the back for weathering this storm and being a huge advocate for your handsome boy!

Virginia







Member Since:
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17 December 2016 - 10:49 am
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WAIT!! You forgot something that shoukd have been in yiur very furst sentence!!

CUTENESS ALERT!!!!!!!

With a dog as cute as Roscoe is in his avatar photos, we need a CUTENESS ALERT to be prepared so we don't overdose on "cute"! Can't wait to see more pictures.

And a standing ovation to you for staying the course, for digging for more and more information while knowing that "something" was going on, regardless of what tests and Vets were saying!! You have really, really been through a lot!!

Is he on Gabapentin for the phantom limb pain?

Even before he got to the point of amputation, he went through sooooo much poopicon_png! It wouldn't surprise me at all that he may have a slower recovery than some! Although, It sounds like it's fairly " ormal".

And great news about the clean margins!!!!

It took me tnree weeks before I felt like I could finally say I was doing this FOR my Happy Hannah and not TO her!

So glad you connected! We want to support you and Roscoe anyway we can! WOW, what you two have been through just floors me! So lean on us, okay?

Love and 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!

Minneapolis, MN
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17 December 2016 - 12:00 pm
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Hi - so, so happy to hear about the post amp pathology and clean margins.  My dog also had a nerve sheath tumor.  I have been told it is believed that sometimes an injury does seem to precipitate the development of this type of STS.

Unfortunately, Pofi's was in his brachial plexus and was much, much larger and a higher stage when amputated.  We did not have clean margins - so please do not dwell on our outcome.  The circumstance was very different.  Pofi had a great 5 and a half months post amp before there was a terminal recurrence in his spine causing paralysis, but we knew we had poor margins and a very advanced, very large tumor with local metastasis (a rib and a lymph node - both removed and very compromised).

I also read your other post about his restlessness.  I would definitely ask your surgeon about the dosage of Gabapentin.  Moreso than perhaps all of the osteo amputation pups and cats, a dog that has had a nerve sheath tumor may really need Gabapentin to control pain during recovery.  Think of his nerves as a big web / network (they are).  Think of a spider web and how it all reverberates when something hits it. This is very similar to what has happened with the nerve sheath tumor - those pain signals traveling along the network.  Pofi ALSO licked and chewed obsessively at small, benign growths - some not even visible. These weren't the cancer, but I am one hundred percent convinced the attention he suddenly paid to them (at the start of it all and at the recurrence) were signals of that activity.  My surgeon said the tumor itself was sending out those signals, but the MRI pre-amputation and the surgery itself, really "jangled" the whole system.  We were very generous with Gabapentin for two weeks prior and after amputation and then tapered down from that higher, frequent dosage over weeks 3 and 4 post amp.

He was 75 pounds and took 300 mg Gabapentin 3 x daily for that two week before and after period.  Higher dosages of Gabapentin may produce some more sedation initially, but it is not a narcotic so the range of dosage is a bit more variable safely than something like Tramadol.  I would really encourage you to speak the the vet about looking at dosage and frequency to see if he might not get a little more rest and relief changing it up in some way.

I also want to wish Roscoe the very, very best  - and please let me know if you want to talk about what our specialists had recommended in terms of oncology and what we did and did not do.  Roscoe is adorable.

And I want to say thanks for sharing your story - I feel so validated knowing that Roscoe was chewing at his paw, because I was told that it was coincidental with Pofi and I am strongly convinced it wasn't.  True, he  was not licking where the tumor was, but the tumor was causing confusion to him about where the source of pain was.  I just know it.

Lisa

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 canine sister also succumbed to cancer on March 1, 2019 - we lavished her with our love in the interim, but life was never quite the same without her only real canine friend. Cliff kitty had to leave us, too, suddenly, in August 2019. Lucia kitty grieved all these losses, but helped us welcome two new Lurchers into our home and our lives, Shae and Barley.

Blog: Pofi, Peripheral Nerve Sheath Tumor Amputation

Member Since:
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18 December 2016 - 9:02 am
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Thanks everyone!

It feels really good to have a community of people who know the extreme stress and mental and physical exhaustion I'm going through.

Roscoe is currently on 100mg of Gabapentin 2x a day. He is 30lbs. The Dr. upped the dose after the 1st day of his being home because he was in so much pain but that seemed to cause his back legs to not work well so we lowered it back down. Now I wonder if we should phase it out because his back legs are still pretty stiff at times. Not sure if that would be a side-effect of Gabapentin or not.

As for the paw chewing, I had to be pretty insistent with the Dr. in the beginning that I thought it was a signal. He was self-mutilating towards the end. Like he wanted to chew his paw off. We ended up having to put a sock over his foot for the last month or so before amputation. The tumor was basically denervating his arm causing severe atrophy. I think the chewing was due to nerve pain or the nerves dying.

I am a little nervous about the Oncology appt. I really don't want to put Roscoe through any more procedures so I am hoping they don't recommend further treatment. I know there is always a chance of recurrence but statistically I think it's low for Roscoe. Keeping my fingers crossed!

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18 December 2016 - 11:02 am
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Whether they recommend chemo or some other treatment, remember that it is a choice, not a guarantee.  Some members have elected not to do chemo for various reasons, and their dogs blew away the survival statistics.  Some members did chemo and their dogs passed much sooner than hoped.  Roscoe's quality of life, including how he reacts to vet appointments, is an important determinant in your decision.  Make the best decision for you and Roscoe and your circumstances and it will be the best decision.

Otis - 106 pound lab/Dane mix, lost his right front leg to osteosarcoma on Febuary 9, 2016.  Four rounds of carboplatin completed in April, 2016.  Lung mets August 25, 2016.  Said goodbye too soon on September 4, 2016.   Lost his adopted sister, Tess, suddenly on October 9, 2016. likely due to hemangiosarcoma.  

Wherever they are, they are together.

Minneapolis, MN
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23 April 2016
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18 December 2016 - 12:16 pm
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juliafeather said
Thanks everyone!

It feels really good to have a community of people who know the extreme stress and mental and physical exhaustion I'm going through.

Roscoe is currently on 100mg of Gabapentin 2x a day. He is 30lbs. The Dr. upped the dose after the 1st day of his being home because he was in so much pain but that seemed to cause his back legs to not work well so we lowered it back down. Now I wonder if we should phase it out because his back legs are still pretty stiff at times. Not sure if that would be a side-effect of Gabapentin or not.

As for the paw chewing, I had to be pretty insistent with the Dr. in the beginning that I thought it was a signal. He was self-mutilating towards the end. Like he wanted to chew his paw off. We ended up having to put a sock over his foot for the last month or so before amputation. The tumor was basically denervating his arm causing severe atrophy. I think the chewing was due to nerve pain or the nerves dying.

I am a little nervous about the Oncology appt. I really don't want to put Roscoe through any more procedures so I am hoping they don't recommend further treatment. I know there is always a chance of recurrence but statistically I think it's low for Roscoe. Keeping my fingers crossed!  

Hi, again:

With recovery from a nerve sheath tumor amputation, my money stays on the Gabapentin not being given at high enough dosage or frequently enough rather than it being the cause of his restlessness: that there is residual nerve pain and Gabapentin is the only thing he is taking that can effectively mitigate that.  Tramadol is a different modality - works in the brain. The Gabapentin works in the nervous system.

Not a vet of course, but every single vet and specialist we saw on this journey, and that equals MANY, were clear and firm on the Gabapentin being the most important and effective for Pofi of the meds he was on.  If we thought we needed to cut back due to stomach issues or other reasons (over sedation) it was the Tramadol that they favored cutting down or eliminating. 

Now the Gaba can cause some sedation or wobbliness / lack of coordination, but it usually decreases over time and you should be able to cut down from a peak dosage in a few weeks. But guidelines say a dog Roscoe's size can be given 150 mg 3 x daily.  See this link.  

Certainly not suggesting you alter the meds and dosage without consulting your vet.  But if it were me, I would be asking about 100 mg every 8 hours and possibly staggering the Tramadol or reducing it as the combination may be increasing the sedation or wobbliness.  But the restlessness, well, I would wager big money on that being discomfort / pain.  I'm sure the meds are helping and the pain is not severe, but if there is pain at this point, as my surgeon said, it really isn't doing any good. Pain serves a purpose to indicate injury, damage, illness - but we know what the root of any pain for Roscoe is (tumor, now removed, but having had a big impact on his nervous system, and the trauma of major surgery).

I hope I am not coming across as bossy - but there are so few here with pets with STS and nerve tumors in particular and my knowledge about it was hard won.  I want it to serve a higher purpose and help others facing the same.  Just want Roscoe to have a restful recovery and for you to get sleep, too!!

I think the visit with the Oncology will be much more positive for you than me.  With a contained tumor and clean margins, amputation is sometimes considered curative.  You did not say if they graded the tumor or not.  There are 3 Stages / grades for this type of tumor, from my understanding.  Pofi's was, again, very, very large and the highest stage.  It really sounds like Roscoe's was caught and removed earlier and that would be great news.

My own oncologist cited many studies on each of the main options, IV chemo, Radiation therapy and Metronomic oral chemo.  And he had a pretty strong opinion about which were more potentially beneficial for Pofi.  After you talk to your onco, if you want more detail on what ours said, I'll be happy to share.  

Again, very best thoughts for Roscoe!!

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 canine sister also succumbed to cancer on March 1, 2019 - we lavished her with our love in the interim, but life was never quite the same without her only real canine friend. Cliff kitty had to leave us, too, suddenly, in August 2019. Lucia kitty grieved all these losses, but helped us welcome two new Lurchers into our home and our lives, Shae and Barley.

Blog: Pofi, Peripheral Nerve Sheath Tumor Amputation

London, UK


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18 December 2016 - 12:34 pm
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I hope I am not coming across as bossy - but there are so few here with pets with STS and nerve tumors in particular and my knowledge about it was hard won. I want it to serve a higher purpose and help others facing the same.

And it will do, Lisa. It is doing. This is incredibly valuable and useful information. Pofi's legacy will endure, helping others through your experience. 

Sending you a massive hug,

Meg, Clare and Elsie Pie xxx

Ruby, Staffy, born June 2022, became a Tripawd, 23 November 2023, adopted 12 January 2024.

Also Angel Tripawd Meg (aka The Megastar), who died in April 2023, aged 14, after seven glorious years on three, and Angel Staffies Pie and Bille. In the pawprints of giants...

The Amazing Adventures of Ruby Tuesday 

My Life as a Megastar

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18 December 2016 - 7:05 pm
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Thanks!

I think if Roscoe hadn't had the episode where he lost use of his back legs with the higher dose of meds I'd feel better about giving him more. That was a really scary thing to go through. Not sure if it was in fact caused by meds but it's not something I want to repeat.

Roscoe's tumor was graded a 2. Not the least likely to recur but not the most likely either. I figure I'll find out more after the Oncology appt. on Tues. about exactly what that means going forward.

I'll definitely report back and get advice on what the options are that they give me.

I'm very thankful for this resource. Thank you all for giving your time to help by sharing your experience!

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23 December 2016 - 12:39 pm
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Oncology appt. didn't really give me any more info than I already had. The Dr. basically said since Roscoe had clean margins with the amputation, there is no way to know if there were any cancer cells left behind and whether or not it would come back. She said the most aggressive approach would be to undergo a round of radiation to kill off any cancer that might be there. I just don't think I can put Roscoe through 3 weeks of going everyday to the vet and being sedated if I'm not sure if he needs it. Not to mention the $5k price tag (on top of the $10k+ we've already spent). The next option would be to wait 6 months, monitoring him for changes, and get an MRI again to see if they see any cancer regrowing. This option feels like it makes the most sense given the circumstance. The Dr. said there weren't very good statistics about recurrence rates for dogs in Roscoe's situation. She said that for her personally, most of the dogs she sees don't have clean margins with amputation so the choices are a bit more clear. She also pointed out that even though Roscoe's tumor was rated as a grade 2 the mitotic grade was a low 1 so it was a very slow growing tumor. I asked her if they did indeed get all the cancer removed would I expect Roscoe to live out a normal dog life minus a leg and she said yes. So, I think we are just going to move forward and hope for the best and rescan in 6 months.

Livermore, CA




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23 December 2016 - 1:02 pm
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For what it's worth I think you have made a well thought out decision. 

Radiation was an option when Tri-pug Maggie's mast cell tumor was diagnosed in her knee.  Once I found out it would be multiple days of anesthetic I decided I would not do it, it just wasn't the right thing for her. 

A MI of 1 is really good!

After everything Roscoe has been through he and his magnificent ears deserve some time to just be a dog big-grin

Karen and the Spirit Pug Girls

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

Virginia







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23 December 2016 - 1:37 pm
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Yes, I want to ditto the "well thought out decision"!! I think your internal voice/gut reaction is speaking loud and clear! And I think that is actually Roscoe's "voice" you are hearing in your gut too!

It sounds like you've gotten good input from your Onco AND darn good chance at really clean margins!

Please keep us posted!

For now though, continue to live in thethe moment free from worries and have the best Christmas ever...jntil the next one of course!! 🙂

Love and hugs!!

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

PS...Lisa, trust us, you AND Pofi are BOTH fulfilling your higher purpose in sooo many ways!! Oh heah, that Pofi is reaching out through you non-stopheart

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!

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23 December 2016 - 4:28 pm
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I also have to agree that this sounds like a good decision.  Roscoe deserves to just be a dog again, and it would be horrible to put him through all that if the cancer was already gone.

Otis - 106 pound lab/Dane mix, lost his right front leg to osteosarcoma on Febuary 9, 2016.  Four rounds of carboplatin completed in April, 2016.  Lung mets August 25, 2016.  Said goodbye too soon on September 4, 2016.   Lost his adopted sister, Tess, suddenly on October 9, 2016. likely due to hemangiosarcoma.  

Wherever they are, they are together.

Minneapolis, MN
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23 December 2016 - 6:39 pm
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Really, such a sound decision, I think.

And I did not end up opting for the radiation despite the high grade tumor and likelihood of recurrence.  I nearly did - was planning on it, but in addition to the 3 weeks of daily drop offs and radiation under GA, which he would have hated so much, we were encouraged to do a CT scan under GA to completely rule out lymph node or lung mets (should not be a concern with the lower grade and good margins), and since that wasn't conclusive another at roughly 6 weeks to rule that all out.  And then one again under GA to plan the radiation.  And then the 18 to 22 successive daily radiation treatments.

Though I felt like we had "dialed" in the anesthesia protocol that was pretty good for Pofi, he was always hoarse after the surgeries and procedures and I was feeling stressed about the effect on his trachea and the cumulative effect of so much anesthesia.  And if we had done it, if he had suffered the burns that sometimes are a side effect.  And lost a beautiful summer month that he greatly enjoyed...  And what if after all that, we were still unlucky and he did not gain much time.  And we had not been very lucky to this point.

If I am being honest, from where I sit at this moment, deep, deep in grief, part of me wishes, selfishly, SO SELFISHLY, that I had followed through with it. But my husband would have been unhappy with the treatment, other people who loved Pofi would have felt the same and I would have died a little each day dropping him off and hearing him cry for me.  In our case, only my selfishness would have been served.  

I am so, so, happy you have the result you have for Roscoe.  And I think you have made a very wise and loving decision. And you should all get back to being happy and not ruled by cancer.  Take lots of photos. Treasure the small stuff.  And Be More Dog .

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 canine sister also succumbed to cancer on March 1, 2019 - we lavished her with our love in the interim, but life was never quite the same without her only real canine friend. Cliff kitty had to leave us, too, suddenly, in August 2019. Lucia kitty grieved all these losses, but helped us welcome two new Lurchers into our home and our lives, Shae and Barley.

Blog: Pofi, Peripheral Nerve Sheath Tumor Amputation

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