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Jackson urinary cystitis, after 5 months of metronomics
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New Haven, CT
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17 July 2013 - 1:39 pm
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Drat!

Lately, Jackson has been peeing a lot, or lifting his stump a lot without success.  Sometimes pee would come. Other times, just drops.  Drops would ALWAYS happen at the end of the walk ("he's blowing dust, at this point!"), but not at the second pee.  His normal volume of pee was all over the place from stop to stop.  Know what I mean?  It was time for his bloodwork and urinalysis anyway....good timing, pal!

I just got the call that his bloodwork is beautiful!  WAHOO!  But in his urine is some blood.  No bacteria, which is good.  Now I'm waiting to hear from his onco about what to do about it.

Am I to be happy that we went 5 months of metronomics without any problems?  He's been on rimadyl since before his amp and at this point, nearly 5 months of cytoxan (daily).  He's a fairly good drinker.  B/c he's a boy, he pees well.  He's also on 400mg of MSM a day and he gets walks at least every 6-8 hours.  I thought we were doing it right.  Maybe we are and 5 months is awesome?  Maybe we weren't doing it right?

BAH!  And this news comes about 2 weeks before we fly off for 3 weeks.  I hope his bladder heals in that time and we can go back on his drugs.  I get a lot of comfort giving that Cancer Killer Pill every day.  Ahhh, but will our dogsitter know what cystitis looks like?  Or, do we keep him off the cyclophosphamide for the next 5 weeks until we return?  (I know, these are questions the onco can answer....but I can't help it!)  5 weeks without that pill, and my mind would be thinking "I'm letting cancer take over!"

I'll post again when I hear the official course of action.

~ Katy & Jackson

ACL tear in right hind leg 12/5/12 and scheduled ACL repair surgery 12/21/12. Pre-op xrays revealed osteosarcoma. Amputation 12/28/12.  Chemo (carboplatin) started Jan 10, 2013 and ended on April 5, for a total of 5 doses. He handled carbo like a champ!  No side effects.  We started metronomic therapy at his third chemo and have been also doing some holistic treatments.  He's a lively, playful 10 year old huskie-boarder collie and a very proud member of the Winter Warriors!  Our love. Our funny little guy!

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17 July 2013 - 2:05 pm
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So sorry to hear Jackson has blood in his urine, but delighted to hear is bloodwork came back all clear. If there was no bacteria doesn't that mean no UTI? I know waiting is so hard but try not to panic too much till you get the urinalysis back. I feel for you, don't these things always pop up when your headed out of town. We cancelled our May beach vacation this year because Atlas was diagnosed and amputated at the end of April. I could have never left him, but I'm really in need of that vacation bout now!
Keep us posted.
Hugs!

Patricia & Mighty Atlas

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17 July 2013 - 5:06 pm
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Jackson will see his onco on Friday.  This totally screws with my "master plan" and it stresses me out!  His onco isn't too surprised that he developed cystitis after being on cyclophosphamide.  He's to go off cyclophosphamide forever.  No more cyclophosphamide, ever.  So what's going to happen on Friday?  They'll feel him over and make sure nothing else is happening and then if he checks out, prescribe leukeran instead.  This also assumes that between now and Friday, his urinary habits haven't gotten worse.  They don't intend to do another urine test, as it would have only been a few days since his last.  (I wish I could give him a week to rebound, but I'm away all next week and hubby works too much, too far away to take Jackson to onco.)

Leukeran has fewer, if any, urinary side-effects.  If that's the case, why do they even prescribe cyclophosphamide?  I asked.  Of all the metronomic protocols, cyclophosphamide vs leukeran, has more data.  It doesn't sound like, however, that leukeran is less effective.  Oncos just like to stick with as good of statistics as possible.

So here's hoping that over the next few days, Jackson's pee habits either improve or don't get worse, that his onco doesn't find anything as they poke and prod, and that they can call in another prescription to Diamondback Drugs for leukeran.  Then, I can continue on my myriad of travel plans and get back to being as comfortable as possible leaving Jackson behind.

Now, what to do with the 90 pills of cyclophosphamide I JUST got from Diamondback Drugs?!  They're 10mg.

~ Katy & Jackson

ACL tear in right hind leg 12/5/12 and scheduled ACL repair surgery 12/21/12. Pre-op xrays revealed osteosarcoma. Amputation 12/28/12.  Chemo (carboplatin) started Jan 10, 2013 and ended on April 5, for a total of 5 doses. He handled carbo like a champ!  No side effects.  We started metronomic therapy at his third chemo and have been also doing some holistic treatments.  He's a lively, playful 10 year old huskie-boarder collie and a very proud member of the Winter Warriors!  Our love. Our funny little guy!

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17 July 2013 - 5:56 pm
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Sorry to hear about Jackson's little bump in the road :( I know how disconcerting it is when that happens.  

For what it's worth, when we were deciding whether to put Jill on the cytoxan vs. leukeran, her oncologist called them "chemical cousins"............I do think cytoxan is more the norm, but she said a lot of oncos are now favoring leukeran, because of the cystitis issue.

 

I know this sucks, I know its so frustrating when you hit a snag....

 

All our love,

Erica & Jill 

Jill is a 9-year-old tuxedo kitty. She was diagnosed with Osteosarcoma in June 2012 on her toe in her right hind leg. Her leg was amputated on 12/12/12 and she completed four rounds of chemo (2 of Carbo, 2 of Doxy) in April 2013. "Like" Jill's facebook page: https://www.facebook.com/JillTheTripawdCancerFightingKitty?ref=hl Proud member of the WINTER WARRIORS!!!! Her blog can be read at http://jillsjou.....ipawds.com. xoxo

Montana
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17 July 2013 - 6:11 pm
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Yay for the bloodwork, but BOO for the cystitus. Sounds like there is a plan of action so that helps some. I'm sure Jackson will do just great while your gone. Maybe the sittercould send you a daily picture just to help ease your mind.

Keep us updated.

Luanne and Shooter

Spirit Shooter was a Miniature Australian Shepherd who was diagnosed with a MCT and had a LF amp 1/28/13 at 13-1/2 years old. 

Shooter crossed the Bridge on 8/28/13, his 7 month ampuversary and two weeks from his 14th birthday.

http://shooter......ipawds.com

Virginia
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17 July 2013 - 9:59 pm
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Wow Katy, what a tmely discussion your boy has brought to the table! He's such a pioneer paving his own way, so why stop now!!

So just withdrawing the cytoxan is the solution, right...not antiiodics becuase it's not realy an nfection, right? Then you should have NO worries heading n off for a vacation tht will do yo BOTH good!

And Katy, you ARE doing it right! You've dne your research and have become as knowledgeable as possible, ut still jave to rely on the "experts" to guide us.
For YOU, of all people, to think for one second you weren't doing something right?? OMD! You are the epitome of staying the course and there is no better cheerleader in tne land for Jackson...or for us! And that's why Jackso keeps on "fetchon on"

Ths "bump in the road" realy isn't all that unespected. It really seems to be tne catalyst for getting Jackson on am even better treatment now! Hmm.....something to think about:-) :-)

Maybe Diamondback will let you return the Cytoxan?

You stick with your vacation plans. Jackson will be just fine with your dogsitter and your vet who is very tuned into your ine, fine boy!

Cme on Jackson, yo study your peeing test realh well and ace it by Friday okay!! Guess, for now , we're all keeping our paws crossed for good peeeeeeeeig Mr. Dynamic Jackso !!

Look forward to your update Friday AND lots of vacation pics when you get back!

Lots of love,

Saly and Happy Hannah

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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18 July 2013 - 7:16 am
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Oh I'm sorry! Well at least you caught it early and I'm going to bet it will clear up before that fabulous vacation of yours.

Cystitis in boy dogs has been a rare issue, at least here. I'm sorry it happened to Jackson. I agree with your onco: they stick to the drugs that have the most data and for metronomics, cytoxan is it. But I also wonder if giving it every day, as more and more oncos are doing now, has something to do with the increase in cystitis? Makes ya wonder.

Here's to hoping Jackson feels better. Just out of curiosity, what is the price difference between cytoxan and leukeran for the same dose?

Meanwhile, I would ask your onco about where you can offload those pills. Legally you can't send them through the mail to anyone if you're not a doctor, which is why we don't allow folks to list them in the Angel Exchange. That bums me out! I hope you can find someone to give them to.

It's better to hop on three legs than to limp on four.™
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19 July 2013 - 6:50 pm
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Update:

The poor pup had an accident in the lobby, waiting to see his onco.  He's not done that since he was a puppy!  I blotted it up with some paper towel, and there was blood.  And a clot.  Ugh oh.  We saw a new onco (to us) and she felt him all over, took his temp, and reviewed his bloodwork.  First off, all lymph nodes and organs feel fine.  Strong heart beat and good sounding lungs!  Normal temp!  His kidney and especially liver values are superb, "especially for a dog his age"! Excuse me?  Being almost 9 years of age qualifies for that?  Pa'shaw!  She's as comfortable as possible without a crystal ball, that leaving for vacation will be OK.  I like her comfort, but we all agree that things can happen.  Ugh.  Spare me.

It's been 48 hours since his last cyclophsophamide and 48 hours of doubling his rimadyl and MSM.  But, he had an accident.  So, they took more urine from him and will culture it.  The poor guy - they got urine using a catheter.  Ummm, that whole system is inflamed and they had to use that...I understand...but OUCH!  He's a trooper!  We'll wait 2-3 days to get the culture back and hear about antibiotic options, if needed.  His urine was a little cloudy, I guess, which may now indicate bacterial growth.

Leukeran: for a dog Jackson's size (60lbs), he could get 2-4mg per day.  Because we're going away, she's more comfortable starting at 2mg and if well tolerated, go up to 4mg/day.  It was interesting hearing about leukeran - there are SO few side effects, if any that she's ever seen.  I kinda wish we had this talk 5 months ago, as I might have chosen leukeran.  She called Diamondback Drugs to get their quote and for 45 pills of 2mg strength it'd be about $85.  For 45 pills of cyclophosphamide, 10mg strength, it was ~$50.  So leukeran is more pricey.

Leukeran has WAY fewer side effects, is more expensive, but is studied less often.  I don't get the sense it's any less effective.

If you know me, you'll know that I'll be hunting around other pharmacies looking for a better price.  Diamondback was really competitive before, so I actually suspect $85 for 45 pills is going to be a good rate.  It's gonna add up....

Extra green veggies for Jackson over these next few days.  I feel sorry for his pee-problems.  Fortunately, they don't seem to bother him when he's not trying to pee.  He's comfy inside and still wants all the food I can provide and still wants to play with all his toys.

One day at a time.  His pee-problems will improve!

~ Katy & Jackson

ACL tear in right hind leg 12/5/12 and scheduled ACL repair surgery 12/21/12. Pre-op xrays revealed osteosarcoma. Amputation 12/28/12.  Chemo (carboplatin) started Jan 10, 2013 and ended on April 5, for a total of 5 doses. He handled carbo like a champ!  No side effects.  We started metronomic therapy at his third chemo and have been also doing some holistic treatments.  He's a lively, playful 10 year old huskie-boarder collie and a very proud member of the Winter Warriors!  Our love. Our funny little guy!

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19 July 2013 - 8:18 pm
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Hmmm is Leukeran more potent since  cyclophosphamide is a higher dose?  Just curious.  I called them using the dose that Sassy is on now it was 346.50 for 22 mg but seeing that J would get a lower dose makes me think that for that drug Sassy would too and she is 129-130 pound so a little over double what J is.  Maybe I will talk to Dr Boyer about possibly switching her too.  I hate to get another uti. That Augmentin was 90 dollars in itself.   So maybe if I call them for a dose that is about double J's? 

 

I know Sassy's urine had bacteria in it for sure that is why they were pretty sure it wasn't tied to the  cyclophosphamide.  A lot to think about.

Have a great trip.  :)

 

 

Hugs

Michelle & Sassy

sassymichelle-sm.jpg

Sassy is a proud member of the Winter Warriors. Live long, & strong Winter Warriors.
sassysugarbear.tripawds.com
07/26/2006 - Sassy earned her wings 08/20/2013

"You aren't doing it TO her, you are doing it FOR her. Give her a chance at life."

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19 July 2013 - 8:41 pm
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Hmmm.  I don't think that's right, Michelle.  It's entirely possible to have blood in the urine with and without bacteria.  How the bacteria get there, is a question.  However, we know we've got and dogs have hundreds if not thousands of kinds of bacteria inside us.  All it takes is for some to go where they shouldn't or for some to grow out of control.  Bacteria love inflammation!  In Jackson's case (and maybe Sassy's), the cyclo initially caused inflammation.  That most definitely lead to blood in their urine.  Then bacteria grow, and well, that leads to a bacterial infection.  Using antibiotics on just inflammation, won't do anything - that is, if the inflammation isn't caused by the over growth and resulting irritation (read: inflammation).  Blood in the urine without bacteria is probably pretty rare b/c at that point, bacteria are loving up the inflammation!  An overgrowth of bacteria and/or the wrong kinds of bacteria are irritating all by themselves.  I'm more likely to think Sassy's UTI was caused by cyclo.  It's a common side effect.  Just because antibiotics take away the UTI doesn't mean the UTI wasn't caused by the cyclo.  Make sense?

All of this to say...I should have insisted on a culture earlier in the week, so we could be on something by now!  Although, I guess the sample they took earlier this week didn't capture any bacteria (but I'm almost positive it was there!).  The point it moot.

~ Katy

ACL tear in right hind leg 12/5/12 and scheduled ACL repair surgery 12/21/12. Pre-op xrays revealed osteosarcoma. Amputation 12/28/12.  Chemo (carboplatin) started Jan 10, 2013 and ended on April 5, for a total of 5 doses. He handled carbo like a champ!  No side effects.  We started metronomic therapy at his third chemo and have been also doing some holistic treatments.  He's a lively, playful 10 year old huskie-boarder collie and a very proud member of the Winter Warriors!  Our love. Our funny little guy!

Virginia
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19 July 2013 - 8:59 pm
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Michelle and Katy...You're hired! Do you mind becoming Happy Hannah's onco/vet?? Talk about a great dialogue--WOW!

Katy you know you couldn't possible be anymore diigent when it comes to Jackson. The vet should have gone on and done the culture. Vut like you said' it's a moot point.

Just curious, Hannah's on 20 mg. cytoxan and she's 115 lbs. Does that sound a little high compared to what you guys have been dosing?

THANKS for posting such good info. Sorry poor Jackson had to go through this must so we could all become more educated! What a good fella':-) :-)

Love to all,

Sally ad Happy Hannah

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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19 July 2013 - 9:19 pm
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Hey Sally (Salt winker): Thanks for the well wishes and compliments!  20mg of cytoxan sounds perfect.  She's twice Jackson's weight and he was getting 10mg.

Michelle: I forgot to comment on your first post.  Ooops.  It's not that leukeran is stronger than cytoxan; leukeran has a different mode of action.  I don't know what it is, but it still attacks cancer, just differently.  I understand that the dose for leukeran WILL be less than cyclo (=cytoxan), but even at the lower dose, it's pricier.  If you want to start calling places for Sassy for leukeran, I'd start asking at the 4mg dose, but with the possibility of going up to 8mg (Sally, I know you're reading this too, so these doses of leukeran would be the same for Hannah.  Both Hannah and Sassy are twice Jackson's weight).

I was at Walmart this afternoon and asked the pharmacist there about leukeran.  This store doesn't carry the generic (=chlorambucil), so the price was for leukeran (keep that in mind when you call around!).  Walmart would sell me 45 pills of the 2mg strength for.....$684!  Holy cow!

~ Katy

ACL tear in right hind leg 12/5/12 and scheduled ACL repair surgery 12/21/12. Pre-op xrays revealed osteosarcoma. Amputation 12/28/12.  Chemo (carboplatin) started Jan 10, 2013 and ended on April 5, for a total of 5 doses. He handled carbo like a champ!  No side effects.  We started metronomic therapy at his third chemo and have been also doing some holistic treatments.  He's a lively, playful 10 year old huskie-boarder collie and a very proud member of the Winter Warriors!  Our love. Our funny little guy!

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19 July 2013 - 9:21 pm
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Totally understand that is why I am going to have the conversation with my vet at the next appointment which is in a couple of weeks again.  So I think we need to change.  The thing is what is the correct dose.  I was just using the 22 mg as an idea of what we would pay.  that is way more expensive but I would have to figure it out.  But with what you said the dose was less with J.

 

The only reason why I said that was the vets seem to think it wasn't tied to the Cyclo.  But we will se in a few weeks because she will be off the antibiotics a couple of weeks then.  Today was her last dose.

 

Hugs

Michelle & Sassy

sassymichelle-sm.jpg

Sassy is a proud member of the Winter Warriors. Live long, & strong Winter Warriors.
sassysugarbear.tripawds.com
07/26/2006 - Sassy earned her wings 08/20/2013

"You aren't doing it TO her, you are doing it FOR her. Give her a chance at life."

The Rainbow Bridge

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20 July 2013 - 9:21 am
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Aww poor Jackson! I'm glad that at least he had the accident at the onco's office so they could see the clot and blood. And that everything is still pretty good and you can go on your trip.

In the meantime, keep us posted on what you find out about Leukeran. I was telling Michelle that I want to write a blog post about it, versus cytoxan. If you want to start a new topic about it in the Forums, that would be cool too. Thanks a bunch Katy, you are always coming up with such great info for us here!

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20 July 2013 - 11:52 am
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Just chiming in to say give that Jackson some extra treats and scratches and belly rubs! Such a strong good boy!!!!! Hope he's feeling better today.

Patricia & Mighty Atlas

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