Ralphie, pit/pointer mix, macroadenoid pit tumor, considering radiation

[Nichole]

Hi. I'm new. My 8-year-old sweet boy Ralphie has been diagnosed with Cushing's for about a year. He's a pit/pointer mix best we can tell (humane society puppy). He was about 55-60 pounds when healthy.

We started on Trilostane treatment and his cortisol numbers moved into the normal range, but his symptoms didn't change. In addition, he became extremely lethargic and depressed. He eventually stopped eating and had some shivering/shaking and we took him off the Trilostane immediately. We tried to treat holistically, which worked for a few months, but then his symptoms came back. We've recently visited the University of Tennessee and it looks like he likely has a macroadenoid tumor in the pituitary gland. His energy level is extremely low, he has lost 15 pounds within the year, he is losing muscle strength in the hips, and he is developing what we think is calcinosis cutis. His only option at this point is radiation, as the drugs will enlarge the tumor do more harm than good.

Trying to find some folks that have done the radiation treatment and hear what their outcomes were. Not looking to prolong life just for the sake of doing so if the quality of life is not going to improve. Any experiences with radiation treatment of macroadenoids would be greatly appreciated. Would you say the "after radiation" quality of life is close to the "before cushings" quality of life?

[molly muffin]

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Sharlene

[molly muffin]

Welcome Nicole and Ritchie.

If you can do the radiation treatments, then I am inclined to go with them for a macro. Especially the new series where you only need to 1 but University recommended 3 as having better results for Dawn and Butter.
Here is Dawn and Butters thread: http://www.k9cushings.com/forum/showthread.php?t=5850

Jen and Doccy, have had very good results too with radiation therapy: http://www.k9cushings.com/forum/showthread.php?t=4877

Both are active members on the forum and I'm sure you can ask them any questions and they'll get back to you as soon as possible.

I'm so glad you found us as it makes such a difference to be able to talk with others going through the same thing or have gone through.

Welcome!
Sharlene and Molly Muffin

[Nichole]

Thank you! I read their threads. Pretty inspiring. I've never heard of this new 3-treatment radiation option. Do you know what it's called? Is it only being done in certain places? I see that Butters went to UC-Davis, but we're on the east coast. South Carolina. I posted to Butters' thread too.

[molly muffin]

Doccy I think went to University of Florida. The radiation used at U of Davis I think was a newer one, but Dawn can tell you when she checks in. You can call the university vet schools around and see if they are aware of it, and offer it.

Sharlene and Molly muffin

[lulusmom]

I believe UC Davis uses Intensity-modulated radiation therapy (IMRT). A quick search revealed that there is a facility is South Carolina that is one of few who have this technology. I've provided a link to their site below:

http://www.scvsec.com/services/oncology/

[Dawn Anderson]

Hello, Davis uses sterotactic radiation therapy ( not sure if I spelled it right), it was 3 treatments on 3 consecutive days. She did really well. If you get a chance could you create an album for Ralphie ( love the name) so that I can see his calcinosis cutis , Butters has a fierce as of it, hoping he does not!! But if he does there are several of us hear that can help you with the care of the CC.
He has a very sweet face, I really hate that this condition exist it can be so heart breaking.

Should you have any ? Just ask any time

Dawn and Butters

[Nichole]

I'll see if I can figure out how to post pics. We are still waiting on the vet to confirm through biopsy that it is CC, but I'm 99% sure. I'll call the place in SC and see if they do this sort of radiation. My vet wanted to do 19-21 days, M-F, of radiation treatment. U of Tenn was 15 days. That's too traumatizing for Ralph. We don't want to put him through that.

Right now, I'm trying to figure out how to treat the CC if we decide not to do radiation. I know it will get worse, but if we can slow the growth and make him comfortable, that may be our only choice at this point. It's been a hard week. What are the downsides to DMSO? That's what my vet recommends, but I'm not treating until we get the test results back on Monday or Tuesday.

[Nichole]

Here is his photo album. Let me know what you think: http://www.k9cushings.com/forum/album.php?albumid=839

[Nichole]

Sorry for so many questions, but it is hard to find the information I'm looking for online and you all seem to have already done a TON of research. You really have to be the advocate here, don't you? The vets don't even have a ton of information.

It looks like my vet does conventional radiation, which we do not like. Then you have either (1) stereotactic radiation (Butters) or (2) intensity-modulated radiation. The closest facility to us that does stereotactic radiation is U of Florida. As Lulu's Mom pointed, out, though, there is a facility in SC that does intensity-modulated radiation. What does that consist of? How many days of treatment?

I'll put a call in to the facility as well. Thanks for all of your support! I don't want to put Ralphie through anything too overwhelming, but if there is something within reason, I'm not ready to give up yet.

[labblab]

Hello and welcome from me, too! I'm afraid I'm not familiar with these new radiation techniques so I cannot be helpful in that regard. But after reading your introductory post, I do have a couple of other questions that have cropped up in my own mind. First, can you tell us more specifically about any testing that was performed at Tennessee that has led them to conclude that Ralphie's problems are secondary to a macrotumor as opposed to lack of control of the Cushing's? Also, can you give us a more complete history of his trilostane dosing and monitoring ACTH tests? Actual test numbers and dates would be great!

Your description of the initial crisis that led to discontinuation of the trilostane could definitely correspond with an Addisonian situation wherein Ralphie's cortisol dropped too low and/or his levels of postassium and sodium became unbalanced. This can happen at any time during trilostane treatment and at any dose, so I am wondering whether he had monitoring testing performed right at that time to clarify that the problem was something other than low cortisol or an imbalance in his blood chemistries secondary to the medication. If, in fact, he was overdosed at that time, it does not necessarily mean that he cannot tolerate trilostane at all -- just that the dose needs to be lowered. His current lack of energy, loss of muscle strength, and possible calcinosis cutis could all be consistent with a rebounding cortisol level that is now too high once again. Lack of appetite is indeed unusual in a Cushpup, but we have seen it on occasion. How is Ralphie's appetite doing right now?

You are right that a macrotumor can be a game-changer in terms of resuming Cushing's treatment. But that's why I'm hoping to get more info about your visit to Tennessee. With whom did you consult, and did they perform testing that makes them think that a macrotumor is likely? Did they actually confirm this with a CT or MRI image of his head?

Thanks in advance for any additional info!
Marianne

[Dawn Anderson]

Just ckd out Ralphies album, first off he is beautiful and his eyes, those eyes are amazing. I would have to say he has what we call the dreaded CC from looking at the pics of him and my heart goes out to both of you, many of us here are also dealing with this aspect of Cushing's, thank god not all cush pups get it.
I'm using a spray called Trizchlor spray conditioner and Mupirocin ointment usp 2 percent. Buttercups IMS and Derma Dept at Davis set me up with them, they are helping keep infections at bay, we use the ointment on the spots.that bust open and are raw and the spray we use over all the areas with CC.

What really stinks about the condition is that you have to get the primary issue under control, its the hormones, till that is balanced the CC will continue to spread I hate to say this but I must be upfront with you, the CC will get worse before it gets better, I just pray that it is slowing down and Ralphie dose not end up with a case of it like my Miss Buttercup. Oh and the dryer you can keep the skin the better, not only from experience but also as instructed by Dr.s at UC Davis

Keep up the good work with Ralphie and we are all here for both of you.

Lots of hugs for both of you
Dawn and Buttercup

[pansywags]

Nichole, I'm just starting out on this with Pansy as well, so I don't have a lot of advice to offer, just wanted to offer my wishes that you and adorable Ralphie get some relief. You aren't kidding about having to be a strong advocate, I feel like I'm in enrolling in veterinary school.

[Dawn Anderson]

Morning , just wanted to pop in and see how Ralphie is doing this morning, hoping he is have a good day .

Wishing you both the best.

Dawn & Butters

[Nichole]

My dog, Ralphie, has CC too. I added a few new photos. http://www.k9cushings.com/forum/album.php?albumid=839&pictureid=6240

I'm curious what the progression of getting better looks like. I've got some early pictures where it starts coming up from under the skin and it is just pink, then it gets hard and crusty. It's got black stuff that comes and goes, but I don't really know what it is.

He had an infection and I had him on an antibiotic, which seemed to stop the progression altogether. Now, they've diagnosed an antibiotic resistant staph infection. They want to put him on a stronger antibiotic that they say he'll be on for a long time. I've been reading a lot about Manuka honey's ability to fight antibiotic resistant infections. I bought some high powered manuka honey to try it out. It's only been 24 hours. The moisture from the honey makes his spots bring red rather than sorta grey and crusty. Everyone says the moisture is bad, but why?

His, luckily, haven't bothered him too much. They don't crack or bleed or burst open. Does anyone have pictures of the progression from bad to better?

Hi Nicole, As you can see, I have copied your post from another member's thread and placed it in Ralphie's original thread which makes it easier to find his whole history.

Hugs, Lori

[Arizona Boston]

Hi Nichole,
My Lucy has the Dreaded CC also. Hers was more spread out, but in a few places did a big patch like Ralphies. And on those areas seemed to lift up and then really take the skin off. We did antibiotics, medicated baths, and a few human topicals, but it wasn't til her ACTH got low enough that the healing really began.
Its a sad and cruel aspect of cushings that only some dogs are burdened with.
Like Dawn says, my Vet told me it would get worse before it gets better and unfortunately that was true with Lucy. She wore T shirts for a while…
But there was light at the end of the tunnel for her…she fur has grown back and the remaining CC bumps are fewer and smaller.
Hang in there Ralphie Boy!
Shelly and Lucy

[Nichole]

It sounds like everyone does something different for their case of CC. My pup's CC was infected and I used really powerful manuka honey to get rid of the infection. That stuff is amazing. It is dry now, but I'm not convinced that is the most comfortable for him. He's so itchy. We've been lucky that Ralphie's CC hasn't not been too oozy and doesn't really break open and bleed. I've been using castor oil packs once a day to keep things a little moist and I think he is more comfortable. He's such a tough guy - it is hard to tell. The castor oil has all sorts of positive natural effects, so I'm hoping it brings some relief.

I have copied this post from Bogie's thread so the information about how you are handling Ralphie's CC can be seen by anyone following his journey.

[Doccy]

HI Nichole,
Doccy did Stereotactic radiation at University of Florida for a macroadenoma pituitary tumor. We did 5 days consecutively. He tolerated the treatments extremely well and we saw improvement almost immediately. We confirmed 20% shrinkage via MRI after 3 months and they were predicting another 40% shrinkage. The goal was to halt the growth, so the shrinkage was really a gift. It has been 1 yr 2 months since the radiation and his symptoms are completely gone. His cushings symptoms are gone and all his liver numbers are in the healthy range. We never did cushings treatment because his symptoms were never bad enough to warrant it. The doctors at UF are awesome, if you go, I recommend Dr. Kelvin Kow. He is a radiation oncologist and is AWESOME!! I wish you and Ralphie the best and keep us updated on what you do! Let me know if you have any other questions. :-)

[goldengirl88]

Manuka honey is such a great thing to use. A lot of people are unaware of it's powerful healing abilities.