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Lomustine (CCNU) anyone with experience? 11 1/2 yr old Bulldog. 2 yr post amp
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18 January 2011
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21 May 2013 - 10:02 pm
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My 11 1/2 yr old Bulldog has been diagnosed with Epitheliotropic Lymphoma. She is 2 years 4 months post amp and has been cancer free until now. Poor thing has an enormous amount of sores/scabs all over her body and a large tumor on her vaginal area. Besides that she is doing well, happy, eating, playing etc. She also was diagnosed about 6 weeks ago with a chemodectoma (a tumor on her heart putting pressure on her pulmonary artery).

This is my struggle. I am blessed every day that she wakes up for the mere fact that she is an 11 1/2 yr old bulldog, add cancer to it and I am extra blessed. The vet has prescribed Lomustine for her. I have read the side effects and dangers but I am wondering how common some of them are. I am not as concerned with long term side effects such as liver function etc. I am concerned with the short term ones like vomiting/diarrhea. Prognosis for her with treatment is 3 months. I don't want those three months having her feel sick. I would rather keep her happy and comfortable, even if its shorter time. But at the same time I don't want to cut her time even shorter if I could do something.

I'm so confused, I love this ole girl. She has been through so much and has been so amazing through it all. I want to do what is best for her.

Any advice or stories etc. is greatly appreciated
Thank you
Bonnie, Tulip's mom

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krun15
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21 May 2013 - 10:21 pm
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Hi Bonnie and welcome, your future posts will not require moderation.
Out of curiosity, why did Tulip have the amp originally?
Your girl does have some challenges, and almost 12 years old! My pug Maggie was on lomustine as part of chemo after her amp for mast cell cancer. You can read about her protocol in her blog: http://maggiesj.....ll-cancer/.
Maggie did pretty well with her chemo, she was on vinblastine in addition to the lomustine. We had to postpone treatment once in 6 months due to a low WBC, and there was a little nausea, but I don't remember which med that was.
You can always try the chemo, and if she has a bad reaction you can stop. We started Mag on low doses and ramped up until she had a reaction, which was nausea, then backed down to the dose that didn't cause problems. And she had some anti-nausea meds that took care of the nausea. With chemo we were hoping to get 6 to 9 months, so it was sort of a palitative situation (Mag beat the odds though and lived almost 4 years).
Good luck with your decision.

Karen

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21 May 2013 - 10:55 pm
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Thanks Karen. The reason for Tulip's amp ending up being a fibrosarcoma in her bone. They were very puzzled for a while because she was limping for a few months and X-rays never showed anything. She was 9 years old and figured old age stuff. One month the X-ray showed some issue. They did a bone biopsy and it came back as a bacterial bone infection. After major doses of antibiotics for 6 weeks the next X-rays showed almost complete deterioration of the elbow. The vet was so puzzled, it looked like osteosarcoma but yet untreated for 6 months, she shouldn't have been so healthy. With the extent of damaged bone, amputation was our only option. The best decision we ever made.

I have the script for the Lomustine, our doc says 1 pill every 2-3 weeks. Since we r looking at such a short time and her age could make it even shorter, I worry that even the first pill will make her sick and I won't have a chance to decide to continue or not. You say the nausea was not too bad?

Thanks again
Bonnie

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On The Road


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22 May 2013 - 6:39 am
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Bonnie, welcome to you and Tulip. I know you're in a tough situation, we'll try to make it a little easier.

Karen is so right; you can always stop if you don't like the side effects. There are anti-nausea pills the vet can give you as a preventive, but should they not work for some reason, you don't have to continue the  meds.

Also, when it comes to time, remember that a prognosis is just a guess. Your dog is unique and doesn't have an expiration date stamped on her butt (as one famous Tripawder, Trouble's Mom, likes to say!). Lots of dogs like Karen's have blown away those statistics, so you just never know.

Take this day by day, it's the best you can do. That's living in the now, just like Tulip always has.

Do you have any photos of her?

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

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Colorado
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27 February 2011
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22 May 2013 - 10:18 am
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oh my dog, i love tulip! i saw her videos and her bubba howling. i used to howl when my tripawd roommate lived with me. he would howl and then i would help.

tulip, you are amazing! if i were a tripawd i would want to be like you. i am tough and funny and beautiful, just like you. i hope your new medicine does not make you feel sick and i hope you are here a bery long time more. 

i lost my roommate dakota dawg in december. having a tripawd in the family is important. your family needs you there. please stay strong because you are a TWP, a tripawd warrior princess. i assume you have a pink cape. 

love, evelyn

Beauty this good takes a lot of sleep.

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Virginia



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22 February 2013
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22 May 2013 - 11:11 am
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Hi Bonnieand Tulip-------I don't have first hand knowledge of the drug but just wanted to make a couple of comments and let you now we are all here for you-----wherever this gurney takes you.

I have the privilege of having a "young" sixteen year 15 Lb. Who has had heart tumor for at least six months..and other than whacky breathing noises when resting , he's doing very well---had spleen taken out year and half ago and tumor possibly related to that....kinda' forgotten all the details. He's alive, vibrant a d that's all I Ned to know! The vet has had him on Enalaprilto help open up the blood vessels?.

One "process" I go through when trying to deicide a "tough" decision for my dogs is: "Will I second guess my decision if I DON'T do xxxxxxxxx? Of course, I usually second guess regardless! Just throwing it out there for whatever it's worth.

Bonnie, you are doing everything out of love for Tulip and that's always a right decision!!

Oooooo hard, but try and stay focused on the present, the moment. Tulip isn't worried about a thing except getting love every second of everyday and enjoying all her good food!!

Hey! What's up with Evelyn seeing a video of Tulip?? Did I miss a link to that??

Lease keep us posted. You are not alone. Your love for Tulip will be guiding you to the right choices.

Surrounding you with calm, strength empowerment:-) :-) Go give that sweet Tulip a big hug for us:-) :-)

Sally and Happy Hannan

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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krun15
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22 May 2013 - 11:17 am
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Hi again,

I would ask your vet how big a dose he is giving Tulip- I mean is it a low or highish dose.  My oncologist started Mag on a low dose and she had no effects until the dose was raised.

For Maggie the nausea was very mild- she never threw up, and she never got diarrhea. We had an anti nausea med, mercapolide... something like that, and it was very effective when we had to use it. She was only off her food a couple of times, and some of that was stubbornness.  I gave her chicken and rice when she was not feeling good, and she didn't want to go back to the normal food!  As I said, the goal was to get us 6 to 9 months, without making Mag miserable. 

 

Karen

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In your heart, where I belong.
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22 May 2013 - 11:20 am
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Sally, Tulip's mama posted her YouTube user name in another spot here and said it shows Tulip learning to hold a bone down with one foot. Of course we had to watch the one with Bubba howling, too. Here it is:

From abandoned puppy to Tripawd Warrior Dude, Dakota became one of the 2011 February Furballs due to STS. Our incredibly sweet friend lived with grace and dignity till he impulsively raced over the Bridge on 12-15-12.

Dakota's thoughtful and erudite blog is at http://shari.tr.....pawds.com/

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Virginia



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22 February 2013
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22 May 2013 - 11:49 am
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Thanks sloop much Shari........THAT was adorable:-) :-) :-) Love how Tulip used her other paw!!

Such a gentle girl.....didn't bother her at all having anyone near her bone. I loved that moment where she laid that wonderfulbig headed mug on the o e:-) :-) :-)

Made my day.....thanks again SHARI and TULIP:-) :-)

Sally 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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22 May 2013 - 2:37 pm
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Thank you everyone for all your insight and advice. I have been trying to set up a blog but having some trouble. I know Jerry asked for some pictures of Tulip, that is where I am having the issue. On my computer every time I upload a picture, I get kicked out of the site and have to log back in. On my iPad I can't figure how to crop a picture for the header.
Anyway I will keep trying, I think I got some pictures up tho. Mostly you will see Bubba and Tulip together. They are litter mates and are very close. He is as healthy as a horse, it's crazy. He is so kind to her and just cuddles.

I think we will give the mess a try and see how she does. I have to get the Rx filled so I will start this weekend when we are home and can watch her.

Thank you again for the support. Sally and Evelyn, glad you like the video

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Montana
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1 February 2013
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22 May 2013 - 5:52 pm
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Tulip is adorable. Such a dainty princess!

I will be interested in how it all goes for her as they are going to be starting Shooter on lomustine also. 

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

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On The Road


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22 May 2013 - 7:50 pm
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bulldog22 said
 I know Jerry asked for some pictures of Tulip, that is where I am having the issue.

LOVE that video too! We added it to our Tripawds YouTube Channel.

As for adding pictures, see if this Tech Support Post helps. Let me know if not.

 

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

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Kelowna, British Columbia Canada
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24 May 2013 - 1:16 pm
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Hello Bonnie and Tulip,

Not sure if you have made any decisions about using CCNU (lomustine) or not but thought I would provide our experience with the lomustine use.  Tahoe, our 9 1/2 yo golden with hysticocytic sarcoma, has gone through two rounds of chemo and we here hoping to do a 3rd today. In a nutshell, Tahoe has had little to no visible side effects (i.e. vomitting, diarrhoea, etc) after any of the treatments BUT as all the precautions are out there about liver toxicity.  From day 1 we have been on Sam-e and milk thistle but unfortunately to liver enzymes keep progressively getting higher (ALT, ALP). The onco is unsure whether tis is due to the lomustine or something else happening else with the liver.

As well, we initially paid attention to the kidneys, doing 2 urine analysis to check on damage to the kidneys.

 

Lots to consider and I wish you two all the best, in whatever decision you make.

Stirling and Mr Tahoe

"Tahoe" - Our Amazing Superman and Best Friend.

Dec. 01-03 to Aug. 19-14

Diagnosed with Periarticular Hystiocystic Sarcoma Feb 14-13; Amputation March 18-13, and diagnosed with STS April-14. Tahoe touched so many people while visiting us, leaving a massive void in our lives. Always Missed, Never Forgotten!!

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4 June 2013 - 9:12 am
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Hi everyone.. 

Again I thank ALL of you for the support and information.  I am soo very sad to say that this stupid disease was too fast for us this time. tulip passed away last night.  She was at home and was very much at peace.  Surrounded by love and her brother.  I prayed for the last few days for her to go when ready and not have her suffer.  She was an11 1/2 year old three legged bulldog.  Everything about that is unique and shows what an amazing and tough girl she was.

Thank you again for everything.  I will still be checking in and being part of this amazing community.

Bonnie

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In your heart, where I belong.
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4 June 2013 - 9:17 am
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Oh Bonnie! I was just sitting here and saw this post. I can't believe Tulip is gone, and I am so very sorry. You are indeed correct that it was an absolutely unique situation. "They" say bulldogs don't live to be 11 years old. I have one and I know the typical life expectancy. But still, Tulip was a member of your family and not a statistic.

Please accept my sincere condolences  You've lost a family member and Bubba has lost a true friend and companion. Like my Dakota, Tulip now lives in your heart, exactly where she belongs.

Shari

From abandoned puppy to Tripawd Warrior Dude, Dakota became one of the 2011 February Furballs due to STS. Our incredibly sweet friend lived with grace and dignity till he impulsively raced over the Bridge on 12-15-12.

Dakota's thoughtful and erudite blog is at http://shari.tr.....pawds.com/

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