Ann’s Life

Max’s GME Update: Distressing News

October 18, 2018 By Ann 18 Comments

Our dog, Max, suffers from GME – Granulomatous meningoencephalomyelitis. He was diagnosed with this terrible disease in July 2014 and continues treatment to keep the symptoms at bay. GME is incurable, so managing the symptoms for a good quality of life is the best that can be done with the poor dogs with this disease.

For those of you unfamiliar with Granulomatous meningoencephalomyelitis (GME), it is a canine disease where the white blood cells attack the central nervous system. Max is well past historic long-term prognosis for this terrible disease. When he was diagnosed we were told his chances were “not leaving the hospital” – to – “up to three years”.

We were back in Ithaca earlier this week for round 10 of Max’s chemo (2018). We walked in with Max having had a bug, or gallbladder issues, or something the last few weeks.

Hubby and I took a trip to Las Vegas late last month/early this month to go through his Mom’s house. Hubby’s Mom passed away in September, and as the executor of her will, he needed to deal with her possessions and house. We went out to take care of the personal possessions, and for Hubby to engage an estate liquidator and Real Estate agent.

While gone, Sonny-boy stayed at our home with Mr. Max.

Even though Sonny-boy is 30 years old, holds a number of degrees (including two masters), has been on his own for 10 years AND has a SO who is a NICU nurse (and she stayed over a number of days), Hubby still demanded proof-of-life photos and video daily.

SMH

Max did great with Sonny-boy, but Sonny-boy indicated Mr. Max was off his feed the day before we came home.

Max ate less and less the week after we got home, and he definitely was not feeling well.

We took Mr. Max to his regular vet who prescribed Cerenia, and wow did that help! He stopped throwing up and started to eat pretty regularly.

On the return check-up, he had his wellness exam. His blood test showed a very elevated white blood count, and that was a concern. Was it a bug? Was it the GME? (This was last Thursday.)

Max driving to Cornell.

We went back to Cornell earlier this week (Monday) – they used that blood test and started his chemo immediately. While there, he also had a sonogram (ultrasound) for his gallbladder, and an additional blood test to check his white blood cells and liver enzymes.

If you have been following along the last few years (particularly this year) you know Max’s gallbladder has sludge in it, and the doctors at Cornell were worried it would form a mucus seal. Those worries are coming to fruition.

Max has “tentacles” (we saw the sonogram, that is as good a word as any) that are now looking to form a plug. No one knows when that will happen. When (probably not “if”) the mucus seal (plug) develops, his gallbladder could (will) burst leading to a very painful death.

We now have a choice… to put Max down, or to have the surgeons at Cornell perform gallbladder removal surgery.

For myself, I always felt the mucus seal (plug) was the end-game. Hubby, however, feels differently.

And so, Max will be having surgery at the end of the month. There are many, many concerns all centered on his being immune-suppressed. Will he survive the surgery? Will he be able to heal? Will he develop an infection he cannot fight off (because he is immune-suppressed)?

Hubby’s thought process is surgery gives him a chance. My thought process is “is this humane”?

I will say that if Max survives the surgery, does heal well, and does not develop sepsis, he will probably feel a whole lot better. His gallbladder has definitely led to gastric distress and discomfort this year. He will still have GME, and that will continue to be treated, but his other issues will be (should be) gone.

Max in the Cornell waiting room.

The fact that he is the longest survivor with GME at Cornell actually plays in his favor – he has shown he can tolerate GME management longterm. No one knows how long he can continue to do so (we’ve been in undocumented territory for about a year now).

Please wish Mr. Max luck. This is the most dire things have been for him since he first came home after his first chemo treatment over four years ago. He may or may not survive his surgery, but I know this little guy is a fighter. If there is a chance, he will be fighting like crazy to get better.

Here is hoping things go well, and out little PITA will be with us for a longtime to come.

Previous Max posts (read in order from the bottom up to follow his whole story):

• Max’s GME Update: Chemo Round 9
• Chemo Round 8 for Max
• FOUR YEARS!!
• Chemo Round 6 For Max
• Chemo Round 5 For Max
• Chemo Round 4 For Max
• Chemo Round 2 For Max
• Max is Back to Chemo for His GME
• Max Had a Relapse
• Mr. Max April 2016 Update
• Max March 2016 Update
• Mr. Max Post Cornell Visit Information
• Max’s Latest GME Update
• Max’s GME Update, One Year Later
• Max’s GME Update, Month 11
• Max’s GME Update
• An Update on Mr Max, March 2015
• Updating Max’s GME
• An Update On Mr. Max
• Last 2014 Trip To Cornell For Max
• Back To Cornell
• Max’s First Cornell Follow-up Visit
• Max Exercises More Than I Do!
• Updating the Mr. Max Situation
• A Mr. Max Update
• Mr. Max, Mr. Max, Mr. Max
• It’s A Mr. Max Post!

• Disclosure the links in this post may be affiliate links.

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Filed Under: Ann's Life

Max’s GME Update: Chemo Round 9

September 25, 2018 By Ann Leave a Comment

We were back in Ithaca last week to go to Cornell for chemotherapy treatment for Max. We had five weeks in between visits this time due to a scheduling issue with his neurologist. That was fine with us because since starting chemo back in January, we needed to see if he could space out his treatments (as he did in the original protocol).

Hubby has been away a lot this summer dealing with some personal issues. Hubby is Max’s favorite person in the world! A small example would be when they released Max into the room at Cornell where we were waiting to pick Max up last week, he saw me and made a beeline straight towards me… until he saw Hubby to my left. Then it was a hard turn, plus swishy tail, and a bunch of noise indicating how happy he was to see Hubby. I am chopped liver when Hubby is in the room (well, not a good analogy because Max would probably investigate the chopped liver before me).

Why do I mention this?

Max was circling a lot this past month.

A whole lot.

Now, Max will circle more when he is tired or anxious. We had hoped that it was because he was missing Hubby this was feeding his anxiety causing him to circle more, and less of a GME increase. (Circling is one of the main GME symptom.) I could still call him out of the circling, but such a major increase in circling is worrisome.

At PT two weeks ago, the PT noticed he was tight and showing pain across his neck and shoulder areas. We know this may also be a GME symptom.

His neurologist agreed that is possible to explain away the increased circling as being due to anxiety. However, the increased neck and shoulder pain is most likely GME related. With that in mind, Max is now back to an every four weeks schedule for chemo.

The world is Max’s playground – or at least the family room is.

Other news… back in February we were told that there were four dogs at Cornell who had currently survived 3 years after a GME diagnosis. After some back and forth with his neurologist, we found out that the only surving dog over the three-year diagnosis mark that they still have at Cornell is Max. And at four years – let’s just say he’s beat some very, very long odds.

On to the sonogram results!

Last month we did not speak to his neurologist. Normally we drop Max off the evening before chemo (it is a 3 hours drive from our home to Cornell). IF they can get his bloodwork done (the lab closes at 5) he can start chemo right away. If he starts chemo right away (so within an hour or two of drop-off), he is done by the next morning, they get the sonogram in, and we can bring him home later the next day. In the normal course of things though, we drop-off, they draw blood, results are returned first thing in the morning, chemo starts, they unhook him for a sonogram, re-hook him, and we pick him up the following day.

Why the story? Max’s gallbladder had gotten smaller again last month (YAY!). There appeared to be more sludge in the gallbladder (BOO!), but the student we spoke to did not know if that meant more sludge in the gallbladder, or the same amount of sludge that was condensed in a smaller space, so it looked like more volume. This month, when we spoke to Dr. Stephan she confirmed the later – same amount of sludge in a smaller space. His gallbladder did not get any smaller this month.

After two months of “perfect” liver numbers (which were a shock!), his liver numbers were “slightly elevated” this month. The liver and gallbladder are always something to watch closely.

If you are interested in the medications Max is currently taking, click here. They did not change this month.

So, we head back to Cornell in four weeks for more chemotherapy. Max is continuing to beat some very long odds. This little guy is truly a tough one.

Previous Max posts (read in order from the bottom up to follow his whole story):

• Chemo Round 8 for Max
• FOUR YEARS!!
• Chemo Round 6 For Max
• Chemo Round 5 For Max
• Chemo Round 4 For Max
• Chemo Round 2 For Max
• Max is Back to Chemo for His GME
• Max Had a Relapse
• Mr. Max April 2016 Update
• Max March 2016 Update
• Mr. Max Post Cornell Visit Information
• Max’s Latest GME Update
• Max’s GME Update, One Year Later
• Max’s GME Update, Month 11
• Max’s GME Update
• An Update on Mr Max, March 2015
• Updating Max’s GME
• An Update On Mr. Max
• Last 2014 Trip To Cornell For Max
• Back To Cornell
• Max’s First Cornell Follow-up Visit
• Max Exercises More Than I Do!
• Updating the Mr. Max Situation
• A Mr. Max Update
• Mr. Max, Mr. Max, Mr. Max
• It’s A Mr. Max Post!

• Disclosure the links in this post may be affiliate links.

• If you enjoyed this post, be sure to sign up for the Ann’s Entitled Life weekly newsletter, and never miss another article!

Filed Under: Ann's Life

Chemo Round 8 For Max

August 28, 2018 By Ann 6 Comments

Last month I shared the very happy news that Max has made it FOUR YEARS!! past his diagnosis of GME.

For those of you unfamiliar with Granulomatous meningoencephalomyelitis (GME), it is a canine disease where the white blood cells attack the central nervous system. Max is well past historic longterm prognosis for this terrible disease. When he was diagnosed we were told his chances were “not leaving the hospital” – to – “up to three years”.

Last week we were back to Cornell for more chemo for Max. There was again good news as his gallbladder was once again smaller, and his liver numbers, “perfect”! There was also potentially bad news as there was mention that there may be more sludge in his gallbladder. Max also has an ultrasound monthly to determine the size of his gallbladder, liver, and kidneys. There is sludge in his gallbladder, but no plug. They could not be sure if it was the same amount of sludge in a smaller place, or he if he has developed more sludge. There was also a mention of crystals (that concerns me as a stone would be bad news).

His meds were adjusted too. We had stopped the Metronidazole for a week to see if he could leave off one of his antibiotics. The white numbers were up in that week, so back he went on the Met.

Max was supposed to go back to Cornell in mid-September (four weeks) for more chemo, but his neurologist spread it out to five weeks. In June, this was the original plan, amended in July, and now back again in August. Sometimes, I can’t keep up! It is such a delicate balance to keep the GME at bay.

Here is a list of Max’s current medicines and supplements. They are all liquid except for the Pregabalin which is in pill form. Max is a horrible pill taker, so we long ago switched him to liquid forms of his drugs and supplements.

• Prednisone (.2 ml)
• CycloSPORINE (1 ml – .5 2x daily)
• Amantadine (1.5ml)
• Ursodiol (1.5ml, 2x daily)
• Metronidazole (1.2 ml, 2x daily)
• Sam-e (.1 ml, 2x daily) – this is one part of demamarin
• Milk Thistle (.8 ml) – this is the second part of demamarin
• Pregabalin (15 mg, 2x daily)
• LiverAid (3x daily)

Max – who hates having his photo taken.

Hubby and I try and go out once per week for “date day”. We started this several years ago when we realized we were not doing enough things together as a couple. Because Max is ill, we have dog walkers stop in when we are going to be gone for four hours or more. They will let him out, play with him, and sometimes take him for a walk!

The dog walker takes excellent photographs of Max with her cell phone. I want her secret. Phone or camera, as soon as Max sees me trying to take a photo he looks down, to the side, or takes off. Heavy sigh.

That is our update for the month. Max is clearly a canine wonder fighting this disease as long as he has. We continue to take one day at a time, and appreciate all the time we have with our marvelous little fellow.

Previous Max posts (read in order from the bottom up to follow his whole story):

• FOUR YEARS!!
• Chemo Round 5 For Max
• Chemo Round 5 For Max
• Chemo Round 4 For Max
• Chemo Round 2 For Max
• Max is Back to Chemo for His GME
• Max Had a Relapse
• Mr. Max April 2016 Update
• Max March 2016 Update
• Mr. Max Post Cornell Visit Information
• Max’s Latest GME Update
• Max’s GME Update, One Year Later
• Max’s GME Update, Month 11
• Max’s GME Update
• An Update on Mr Max, March 2015
• Updating Max’s GME
• An Update On Mr. Max
• Last 2014 Trip To Cornell For Max
• Back To Cornell
• Max’s First Cornell Follow-up Visit
• Max Exercises More Than I Do!
• Updating the Mr. Max Situation
• A Mr. Max Update
• Mr. Max, Mr. Max, Mr. Max
• It’s A Mr. Max Post!