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Thread: Macroadenomas

  1. #41
    Join Date
    Feb 2014
    Posts
    231

    Default Re: Macroadenomas

    Here is Pansy's story in the form of a summary of events since early 2012 and symptoms exhibited. Her history is long so I'll say right here that I think the takeaway from our experience is that if your dog tests positive for Cushings but does not display the classic sign of a ravenous appetite, accelerate your diagnostics immediately. In hindsight I feel Pansy showed her first signs (hind leg weakness) 2 years before she died, and we had a lot of delays along the way (home vet stopped testing entirely after ACTH stim so LDDS wasn't done for three months after I got referred to local IMS, local IMS office communication problems resulting in another delay of a month, waited for vet of choice at Davis for another month). I'll never know for sure but perhaps Pansy and I could have had more time together if we'd gotten a definitive expert diagnosis six months earlier.

    • Hind leg weakness noted Spring 2012, Physical therapy at rehab clinic for a year then home PT for the rest of her life
    • Hypothyroid Nov 2012, started on meds
    • Surgery to remove a dermal cyst Dec 2012, fur never regrew
    • Appetite declines Spring 2013
    • Series of 3 UTIs with e coli, July-Dec 2013, Very Thirsty Dog
    • Retested thyroid Aug 2013, post-pill levels normal
    • Seizurelike event Oct 2013, incontinence begins
    • ACTH stim negative for Cushings Nov 2013
    • Scabby skin lesions first noticed Mid Dec 2013
    • Seizurelike event Jan 2014
    • Referred to local IMS, LDDS test positive for Cushings Feb 2013
    • Self-referred to UC Davis after local IMS stopped responding to my questions. Cushings confirmed at UCD after urine, blood, endogenous ACTH and abdominal ultrasound. Indication pituitary, likely macro early March 2014
    • Cardio consult with ECG showed mass on heart but did not necessarily contraindicate anesthesia late March 2014, UC Davis
    • CT scan showed mass on heart, probably chemodectoma. Pituitary macroadenoma confirmed, additional mass found behind eye, late March 2014 UC Davis. Decision made that her situation was too complex to treat, vets expected her eye to become painful within weeks. Headed home to enjoy our remaining time together with lots of spoiling.
    • Significant neurological impairment upon return home after tests - circling, knuckling, collapsing, inability to eat or drink. I set Pansy free from her failing body at the local emergency vet just before midnight March 27.


    Symptoms exhibited, in order of appearance
    • Hind leg weakness, first noted as legs sliding outward on hardwood floors
    • Dull coat
    • Lethargy
    • I don't know if this is related but her spit got kind of sticky - when she groomed her front legs the fur would be stiff instead of soft
    • Significant and rapid hearing loss. What hearing she had was very non-directional. At times I would call from right behind her and she could hear something but would run away looking for me, unable to tell where the sound came from
    • I did not get this confirmed by vets but I feel she also had diminished sight and possibly smell
    • Panting on even light exercise
    • Muscle wasting
    • Weight loss
    • Decreased appetite (although like me, she always wanted pizza)
    • Increased drinking (over a gallon a day)
    • Occasional nosebleeds, more frequent in cold weather
    • Recurrent UTIs
    • Indoor accidents and occasional urine overflow leakage
    • Muscle atrophy and decreased stamina - we used to walk 2-2.5 miles a day and near the end it was a struggle for her to walk a mile
    • Shivering/tremors across shoulder blades while inhaling, always while laying down (video here https://www.youtube.com/watch?v=YV7mc78B1UM )
    • Seizurelike events (2, one with loss of consciousness)
    • Calcinosis cutis (visual confirmation by UCD, no biopsy done)
    • Red irritated eye (mass behind eye was causing it to bulge outward)
    Last edited by pansywags; 04-11-2014 at 05:00 PM. Reason: details are important.
    “Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand.”
    ― Margery Williams, The Velveteen Rabbit

    Pansy Lou Who, the Velveteen Boxer. Always loved, never forgotten. RIP 2014

  2. #42
    Join Date
    Mar 2014
    Location
    Athens, Greece
    Posts
    257

    Default Re: Macroadenomas

    Huskos' case would be much to difficult to put in one comment because most importantly ,apart from Cushings, it was a mixture of wrong diagnosis and poor Vetoryl follow ups and side-effects.

    Here is the thread ,it makes for a long read i know...sorry...
    http://www.k9cushings.com/forum/showthread.php?t=6211

    I don't know for certain if it was related to Cushings ,but Husko was overweight for more than a year prior to noticing hind leg weakness...
    It made me try to get him to lose weight by cycling (early 2013) since diet changes only helped very little...but stopped it due to him obviously not enjoying it.

    Huskos' appetite had many ups&downs...during the summer while being treated with Medrol/Prezolon for (non-existant) ''athritis&liver'' cancer he lost his appetite.
    During the 1st month of Vetoryl treatment he regained it...but lost it again during the 2nd month on 2*dose without ACTH test...(vets told me its a common side-effect & not to worry...told me the same when circling&pacing first appeared...would have avoided it all if i had signed up here and let people know, as i had discovered this forum...)
    Re-gained appetite again during late-November ,9 days after the MRI and Vetoryl-stopping and 2 days after his first IV vit-C...
    Lost it again during February to the end (immediately upon starting Vetoryl again...)
    As Ginger said...it is a indicator something is wrong!

    ***********
    My .02:
    Once you suspect Cushings:
    1.Get a liver biopsy to check for elevated corticosteroid signs if not certain of the cause of symptoms.
    2.Get a belly ultrasound. Try to have a clear image of both adrenals
    (In Huskos' case one of them was difficult to check ,so not knowing if Cushings was PDH or ADH caused many wrong decisions be made later on trying to be pre-cautious with money in case of Cushings being ADH & surgery needed).
    3.Get a brain MRI (expensive but I guarantee it you won't regret it) ,followed by another one 2-6 months later or when possible, or if any of the following signs are observed (if during treatment of Vetoryl...STOP IT immediately...a macroadenoma causes much more serious damage & way quicker than elevated cortisol levels):
    a.circling
    b.pacing
    c.can't drink water from bowl but rather ''licks'' the air above it
    d.substantially decreased appetite
    Last edited by Iraklis; 04-11-2014 at 04:57 PM.
    Y en las noches
    Que haya luna llena
    Será porque Husko
    Este de buenas
    Y si Husko llora
    Menguará la luna
    Para hacerle una cuna

  3. #43
    Join Date
    May 2014
    Posts
    17

    Default Re: Macroadenomas

    Hi everyone,

    I just found this site and it's comforting as well as very sad to know that others out there have had to or are going through this same thing.

    My little Scottie girl, Lucy, just turned 14 years old on April 14th. She was diagnosed with Cushing's about four years ago and she's been on Trilostane ever since. 30mg. She's done very well on it.

    She's already beaten the odds of living to 14 as most Scotties don't make it that far, so of course, like a bad movie, things all changed just a week ago. She started to literally bite and eat the walls of our house. For the life of me I could not figure out what was going on with her. Just last Friday she had a seizure right in front of me that scared the crap out of me. She was barking at the gardeners and all bent out of shape when it happened. She let out the loudest scream/cry/moan I have ever heard. I just happened to be working from home and I took her to our vet right away. She said that all signs point to a pituitary macroadenoma, or brain tumor.

    There is no way I am going to put her through an MRI, etc. at 14-years of age. My vet put her on some downers for this weekend only to keep her calm as she said that seizures sometimes come in clusters and we are trying to prevent another one. She did xrays just to make sure there was not something else going on with her liver or heart and those looked fine.

    So, I don't know how much time she has left until she declines further but yesterday and today we took her to the park and she walked around sniffing and seemed to enjoy it. She is still eating well and drinking water.

    There are now about six different holes in the walls and I don't know what will happen tomorrow when we aren't here, but we will just deal with it until our little girl is no longer with us.

    Bless all of you for helping your little four-legged creatures.

    Linda in the San Francisco Bay Area

  4. #44
    Join Date
    Feb 2014
    Posts
    231

    Default Re: Macroadenomas

    giving this thread a bump for new member convenience.
    “Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand.”
    ― Margery Williams, The Velveteen Rabbit

    Pansy Lou Who, the Velveteen Boxer. Always loved, never forgotten. RIP 2014

  5. #45

    Default Re: Macroadenomas

    My 12 year old poodle, Ranger has been having a lot of urine accidents in the house for the last several months.

    He had crappy fur but antibiotics cleared that up. He has muscle twitches and he is a very nervous boy who has had seizures in the past.

    He eats less but he is NOT skinny.

    The vet ruled out UTI, kidney disease, lyme disease and cushings. (his ACTH was normal which surprised my vet he was sure it would be positive)

    He arches his back more and has been drinking his water funny for over a year. I don't notice anything with his tongue but he bobs his entire head up and down when he drinks. I thought it was because he didn't want to get his ears wet but now you guys have me wondering if he has a tumor.

    We can't afford to treat if he does and he still loves to play, walk, etc. so I guess I'll keep an eye out. thanks for this thread (I think). It could explain a lot about his behavior.

    Judi
    Jenny: poodle: Diabetic & Cushings since 2011. RIP 11/10/2014 We love you & miss you

  6. #46
    Join Date
    Nov 2016
    Location
    California
    Posts
    188

    Default Re: Macroadenomas

    We are dealing with what we believe go be a macro tumor in our dog Charlotte. I have another thread going but was just alerted about this one for macros. I see there hasnt been any recent activity here though.

    As im sitting here watching my poor baby go down hill im trying to learn all i can. But unfortunately my husband and i arent in the position to spend much more money on diagnostics and treatments. It breaks my heart to have to say that but its the truth.

    Our Charlotte is a 7-8 year old rescued Boxer, we have had her for almost 3 years. She was diagnosed with pituitary cushings at UC Davis on 12/14/16. She was started on Vetoryl, 30mg twice daily, and initially showed some signs of improvement. Her excessive water drinking/urination decreased dramatically and although stil lethargic she did perk up some. This improvement was very short lived. Although her 1st and 2nd ACTH stim tests showed her in the stable range she started getting worse, more lethargic, very poor appitite and shaking/tremoring over her shoulders (which started before diagnosis but only got worse). We took her to the ER a few days ago after she started vomiting and didnt have the strength to walk. We stopped the Vetoryl and she was given a cortisone shot along with fluids and a anti-nausea med. The vet gave her a 10% chance to make it through the night. She bounced back and is still with us but she continues to shake/tremor worse than ever. She also seems to be in some pain. We are also struggling to get her to eat.

    At this point both my local vet and her UC Davis vet are assuming she has a macroadenoma but because we havent had a CT scan or MRI we arent sure. She is currently on a low dose of prednisone and is not taking the Vetoryl. Im wondering if the macro is causing her pain? I have tramadol ive been giving her but any pills are a challenge because she isnt interested in food and treats.

    I thought i might start a Go Fund Me account to try and raise funds for a CT scan but then if the diagnosis is that she needs radiation i have no idea how we would afford it. Does anyone have any suggestions? My heart is breaking watching her lay here and tremor. I want to help her so badly!

    Laurie
    ________________________________________________

    Administrative Note: For members who wish to reply directly to Laurie with thoughts or suggestions, here's a link to her main thread about Charlotte.

    http://www.k9cushings.com/forum/showthread.php?t=8318
    Last edited by labblab; 01-27-2017 at 09:40 AM. Reason: To add link.

  7. #47
    Join Date
    Mar 2017
    Location
    New Jersey
    Posts
    36

    Default Re: Macroadenomas

    Hi Everyone,

    I am new here as a posting member but not as a researcher! I've been using this site as my font of information every since my dog Mojo's diagnosis with Cushing's in August last year.

    I am posting today because after countless frustrations and stress I am finally at a point where we understand what is going on.

    In the interest of not writing a novel, suffice it to say that Mojo (9.5 years old) probably had Cushing's/macroadenoma for several years prior to our diagnosis. As with almost everyone else here, I started to notice things but never put together the whole puzzle until the pd/pu started to become bothersome.

    Anyway, he was started on trilostane and it's been a roller-coaster. He did ok for a few months on it, but it became increasingly difficult to manage his inappetence while on the drug. I became exasperated and finally called Dechra and opened a case with them to try and figure out what the deal was - no dosage seemed to work consistently and every time he would become anorexic.

    I am posting today to share a few things: first, the Dechra vet tech services team is AMAZING. They assigned Mojo a case number and we've been in consistent consultation to try and get him on a good dose. Second, it was the doctor at Dechra who FINALLY said that she suspects a macro adenoma considering all of the symptoms, but mostly his inappetence every time we seemed to be hitting our stride.

    She explained that the trilostane controlling the cortisol likely reduces the anti-inflammatory response and the tumor begins to swell because it is no longer being "anti-inflamed". Since the pituitary is adjacent to the area that controls appetite and vomit response, when the tumor swells (when cortisol is controlled) it interferes with those responses and hence the inappetence and sporadic vomiting. Eureka! This makes perfect sense and matches his symptoms.

    So,from what I can see on other posts in this thread many have encountered similar frustrations when trying to treat Cushing's and macroadenoma. I thought this information could be helpful for others - for me, the most stressful part of this journey has been trying to manage the inappetence. Now at least I understand what is happening and I know it is not just a side-effect of the medicine.

    Mojo is still with me and we are managing as best we can. He continues to decline and all seems to be in line with the progressing macroadenoma. He is off the trilo for now and we are managing his symptoms the best we can. He is not suffering terribly at this point, but I do see the end is coming. Probably sooner than I am prepared for but then again are we ever really prepared?

    I might try some prednisone to help with his symptoms (counter-intuitive, I know but it makes sense to try and shrink the tumor a little for his comfort) but other than that, we will not be taking extreme measures. Radiation therapy at this point would be cruel - he is very weak and the drama of weekly car trips and anesthesia is not fair to him. We are enjoying every minute and taking it one day at a time.

    This is an awful disease and I am grateful for this forum. The wisdom shared here has helped me so much during this journey ... and it has provided me with a platform of knowledge so I know what to expect as Mojo heads toward the rainbow bridge. Thank you for helping us!!!

  8. #48
    Join Date
    Apr 2009
    Location
    Georgia
    Posts
    14,075

    Default Re: Macroadenomas

    Welcome to you and Mojo, although I am so very sorry for the problems that are prompting the suspicion of the macrotumor. Thank you so much, though, for sharing your thoughts and experiences with us. What you've written does indeed correspond with the information that we've gleaned from other clinicians and researchers, and it is very helpful to have it here.

    One additional thought that I might add is that some neurologists have chosen to give Cushpups suffering from macrotumors a combo of both trilostane and prednisone, which truly seems counterintuitive. But to the best of my understanding, it is for this reason. In situations where a steroid is thought to be helpful in reducing swelling and inflammation, you want it to be dosed in a consistent and predictable way. That means that for a dog with Cushing's, you may want to make sure that the dog's own cortisol level remains under reasonable control before adding in the supplemental steroid. Otherwise, the natural cortisol can elevate by leaps and bounds, and you have no idea whether or how much supplemental prednisone to be adding into the mix. As I say, just one more thought to add.

    Again, thank you so much for sharing your story in the midst of the stress and sadness that accompanies this illness. If you should wish to do so, I encourage you to start a thread about Mojo on our main Discussion forum. In that way, we can offer our support to you both in the days to come. From my own experience, I know how truly meaningful that daily support can be!

    Marianne

  9. #49
    Join Date
    Apr 2009
    Location
    Georgia
    Posts
    14,075

    Default Re: Macroadenomas

    I am stopping back by today in order to provide a link to the thread of one of our current members who has just now successfully completed five days of stereotactic radiation at the vet school at North Carolina State University. Yogi is a flat coated retriever who was diagnosed with a macroadenoma after the lack of a proper response to regular ongoing trilostane therapy. Last week, he had a complete series of five daily radiation treatments, and he is already showing some behavioral improvement. We surely hope this trend continues! Here is his thread for anyone who wants to read about his journey thus far. And we invite his mom, Angie, to join us here, as well, if she has any thoughts that she cares to add here on this “Macroadenoma” thread.

    http://www.k9cushings.com/forum/show...out-Trilostane

    Marianne

  10. #50
    Join Date
    Apr 2009
    Location
    Georgia
    Posts
    14,075

    Default Re: Macroadenomas

    Stopping back by again, because I am realizing that we’ve never provided any specific links that discuss surgical tumor removal as an option for pituitary macros. Kathy, who started this thread, has shared a lot of info about her dog Macy’s unfortunate surgical treatment. However, we do have a success story to share, as well. That’s the treatment of another member, Lucy, who was the first dog to undergo surgery in a pilot project introduced in Los Angeles a few years ago. In order to provide some related links, I’m going to copy a reply that I wrote last fall to Yogi’s mom when she was debating stereotactic radiation at North Carolina State. It’s kind of a general summary of treatment options, so it’s somewhat repetitive of things that have already been shared here. But it also contains those links about Lucy and her surgical team. To my knowledge, surgery is still offered only rarely here in the U.S. But I did want to let folks know a bit about the history.

    Through the years, we’ve had members who have undergone a variety of treatments for enlarging macrotumors. Initially the only option here in the U.S. was the prospect of over a dozen traditional radiation treatments over the span of a month, with general anesthesia required for each procedure. Over time, more specialized options have been introduced in some centers, including cyberknife-type treatment that only requires a very few sessions, and also actual surgery. In that vein, Dr. David Bruyette has helped pioneer successful canine surgery as a joint effort between UCLA and Cedars-Sinai Hospital in L.A. One of our very own members, Lucy, was his first patient in that pilot program, and I believe surgeries are still being done there on select patients. Here are some write-ups:

    http://dogaware.com/articles/newscushingssurgery.html

    https://www.cedars-sinai.edu/Researc...st-Friend.aspx

    We’ve also had members who have received advanced stereotactic radiation treatment at UC Davis and Washington, among other centers. I think Florida may also offer advanced options, as well. As you might expect, results have been variable. Some dogs have had very good responses and remained neurologically improved for an extended period of time. Some have not. Some have had an extended respite from Cushing’s treatment. Others have had to continue with Cushing’s treatment even though the tumor size was reduced enough to relieve neurological symptoms. I think a lot will depend on the actual location and dimension of the encroachment, as well as the vets’ assessment of Yogi’s overall viability as a treatment candidate.

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