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Nivolumab ( new official generic name for BMS936558 - MDX-1106 )

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

Just was told by John's Research Nurse that that BMS936558 or MDX-1106 finally has a name Nivolumab (generic).

News on investment prospects:
Bristol-Myers Squibb/Ono Pharmaceuticals’ Novel Immunotherapy Nivolumab Will Earn Sales of Nearly $400 Million in 2021, According to Findings from Decision Resources

http://eon.businesswire.com/news/eon/20121126005776/en

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

It's not new Alice - you may have noticed a number of messages in which I've previously referred to it by its chemical name (e.g. one to your Husband a month ago).

I'm amused by the wild-arse guesses put out by Decision Resources as if they're gospel. I wonder who the naive clients are who actually pay money for such prognostications.

foxhd's picture
foxhd
Posts: 2055
Joined: Oct 2011

I've got me a new name. Now to learn how to say it.

garym's picture
garym
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Who makes these names up...and what ever happened to the easy ones like Gobbeldeegoop?

Texas_wedge's picture
Texas_wedge
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USAN does in the States Gary. INN internationally. There's been much discussion on KIDNEY_ONC about it today (I'm one of the guilty parties) and I could reproduce it here but it would likely bore everyone to tears.

I used to hear 'those faraway medicines with the strange-sounding names calling, calling me'. Now, alas, they've actually called on me so I'm having to remember their names!

Robin_Martinez
Posts: 6
Joined: Dec 2012

Tex, I agree. A "finding" should involve more than prognostication. These groups "think" or "predict" or "claim" or "say." They do not "find."

Making a claim about 2021 as if it's fact is beyond silly. (Of course the blame could lie with the reporter rather than with the firm making the prediction.)

Besides, the apocalypse is all set for December 21. That's as likely as BMS-936558 not being FDA-approved until 2017.

alice124's picture
alice124
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Robin,

Great to have the benefit of your extensive knowledge on CSN (as well as ACOR). Keeping my fingers crossed we can keep you well beyond December 21.

Robin_Martinez
Posts: 6
Joined: Dec 2012

I agree. Groups like this do not "find." They predict, claim, say, or think. (Of course the problem may lie with the reporting rather than the group that made the claim.)

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BDS
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Joined: Aug 2012

My oncologists is starting a Phase III clinical trial of BMS936558 (Now Nivolumab) vs. Everolimus at Fox Chase Cancer Center in Philadelphia. Unfortunately, I am not eligible. I will have to ask her opinion about these rosy economic predictions. I hope this drug turn out to be this good!

http://www.bmsanti-pd-1drugresearchstudies.com/index.aspx

I am alive
Posts: 229
Joined: Jul 2012

BDS,
Who is your onc at Fox Chase? Elizabeth Plimack by any chance?

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BDS
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Yes it is Dr Elizabeth Plimack.

I am alive
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Joined: Jul 2012

I love Dr. Plimack's optimistic demeanor! Went into her office a nervous wreck, left with a smile on my face. Really enjoyed my meeting with her (I thought she was, like, 24 years old when she walked through the door!! ) My primary onc in N.Y. , one of the nation's top RCC docs, recommended her to me. I live outside Philly and was worried what to do should a medical emergency arise from a side effect while on his clinical trial, his office being more than two hours away, and he suggested I get a local oncologist on board who is familiar with the trial and the cutting edge machinations going on in RCC world. Dr. Plimack keeps good company! I feel reassured knowing that she's on my team. Glad to hear she's leading your's!

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angec
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I am alive and TW...just want you to know we saw Dr, Motzer on Thursday. The drive was not too bad for mom. It was an all day thing but we were only in his office about fifteen minutes. He said he thinks it best if mom stays with her onc in Brooklyn and that he will work with him and she can also come to NY to see him if she needs to. Everyone needless to say was impressed with him. He said Torisel is not a good choice for diabetics so that was out. He said Sutent and Votrient work about the same and are tolerated the same. That confused me because I saw an interview where he said most prefer Votrient because the side affects were more tolerable but we just listened and took in his thoughts. We left off with him saying they are both heart toxic and she is going for an echo for the heart. She has to be watched closely. She has breathing issues when she moves around but it has improved. He didnt think it was the Lung mets, it did get worse since they got larger though but we are checking her heart anyway. She also has a cough. But for 80 he said she looked great and she has really no issues besides the breathing from the cancer. She is on homeopathy though and that is one of the blessings from that, you feel good even though you have cancer. The other thing he said is that, if anyone had any liver problems not to take Votrient because it is an issue. I am shooting for the Votrient so let's see what he recommends to our doctor. We have not heard from him yet. He also said if the meds do not work he will be happy to bring her in for a trial. There is also a new drug coming out in July called TiVo something or other. So many others down the road. We were so happy to meet him and only wish mom would have done so sooner. They are sending out her slides to classify the cancer type. Her local onc said probably clear cell but wasn't sure. Anxious to get started but worried about the side affects with the heart now. Has anyone had any heart issues? Will keep everyone updated.

I am alive
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Angec,
Sounds like you've got a good plan moving forward with your mom! What a good daughter you are. You picked up some interesting tidbits from your conversation with Dr. Motzer re: liver problems & Votrient, diabetes & Torisel, and the heart toxic qualities of both Votrient and Sutent. Thanks for sharing them with us. Good news that - other than cancer - your mom seems to be in good health. That's huge!

angec's picture
angec
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Thank you so much! I knew when you said "walk don't run" that i better get it in gear! At any rate I am happy to know that he is handling things with mom's doc and if she needs a trail going forward at least the process is started. She does have diabetes and high blood pressure but it is controlled with meds. I am still very much afraid for her with the meds but it looks like it is the only option. When she heard the possible side affects she said "why don't i stay like i am?" She is very, very afraid, with good reason. I just pray she tolerates the meds and they work. But thanks for the suggestion, you gave me the extra vote of confidence and push that I needed. Forever grateful to you!! Be well.. Big hugs!! XXOO

I am alive
Posts: 229
Joined: Jul 2012

I didn't realize your mom is reluctant to start the drugs, and is indeed fearful of them. That makes it tough. Though I guess, in looking back to last summer before I started my trial - a first experience with RCC drugs - I was fearful and reluctant too. I had to get past the notion that going down this road was the Beginning of The End. I was totally bummed. But we humans are amazing. I believe we are programmed to survive. Once the old "it is what it is" pragmatist kicked in I began moving forward. I'm betting your mom will too. She already manages one chronic disease for which she takes medication - diabetes. Well, probably two with high blood pressure. Now, with RCC, she has a third. She's an old hand at this!

Texas_wedge's picture
Texas_wedge
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Yeah, me too BDS! It's about to kick off in London but, like you, of course, I don't qualify.

However, it's a second generation drug in its category and there are others as well as some promising third generation ones in the pipeline too - the times they are a-changing!

tacyarts
Posts: 73
Joined: Apr 2012

What an uplifting day for me, there isn't nothing like a little encouragement !!!

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alice124
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Missed you Tacyarts. How are you feeling? Still in trial or looking for new one?

tacyarts
Posts: 73
Joined: Apr 2012

I'm still in the trial, just have held the sutent until I have my prosthetic femor bone put in my leg on the 14 th. it's a pretty drastic surgury but I have to do something. It does sound like that I will not automatically be thrown out of trial by having the procedure . I will be at John Hopkins for two weeks for the surgury.

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Texas_wedge
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Yes, drastic surgery but necessary and will get you back in action before too long, playing with your kids and enjoying life again.
I'm sure they'll keep you in the trial if they possibly can. Best of luck with both and try to keep us informed about how you're doing because we'll all be thinking about you - don't be a stray cat, be a cool cat!

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alice124
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December 14? So you'll be at Hopkins through the holidays? That kind of sucks but it lines you up for a terrific Christmas present if you can rid yourself of that pain and come back stronger in fighting the beast.

Don't know what your arrangements will be with your business and family in WV, but John and I are close by and willing to help out should you need anything. Just PM me and let me know about that; I can supply phone # too. Stay in touch.

tacyarts
Posts: 73
Joined: Apr 2012

They say that I should be home on crutches around Christmas but dr says that pain will most certainly be drastically reduced. Maybe during my recoop time you could stop by and we can finally meet. It sounds like I will go in around 11 th and surgury will be 14th then 7 days of healing then home for Christmas with the family.

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alice124
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Sometime between now and the time you enter the hospital, e-mail me your real name so I know how to find you. In that same e-mail let me know your favorite fast food, and I'll try to time my* (*our if John's up to it) visit when you're totally sick of hospital food. Thrilled you'll finally going to get some relief.

alice124's picture
alice124
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Tacyarts - Here's hoping your surgery allowed you to enjoy Christmas. How's recovery coming? Any word on trial status? John and I both have been wondering. To you and yours, happy holidays.

 

 

angec's picture
angec
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2021? To me this sounds Crazy! Firstly we hope the drug is available much sooner and that if it works very well the sales will exceed that amount. I guess it is good to see the drug spoken of in the news, which leads us to believe it is getting noticed and hopefully available sooner than later. But how can they predict something so far off? Working in investments myself for many years, I see this as gearing up the investors to get them itchy to make money. LOL Thanks for the read Alice (How are you and John?), i like the way TW summed it up!! LOL

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alice124
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It's tough to scoop Wedgie. Not that I even try. I just had gotten that info from John's trial nurse that day under the headline "we have a name". Who'd have thunk it was old news? (Answer: Wedgie.)

I'm glad you and your mom met with the Doctor; the relief is apparent in your voice. I believe anytime you start the sutent or votrient regime there's concern about the toxicity on the heart (and other organs) and therefore you have to undergo stress tests/EKG's. Your mom sounds like she's in good shape and will likely not have a problem.

I'm sure Tex is right about the dollar numbers and investors too. I kind of put that there tongue and cheek though tongue and cheek isn't always transparent over the web. Way back when Fox started the MDX--1106, he talked about his great response making people rich. Looks like he was right.

John's doing pretty well; been a little down knowing the liver issues that have shown up on the Nivolumab/Votrient arm of trial. He's still on it though and hoping for further reductions. If he has to come off, we'll just find something else.

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angec
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Alice, I didn't know John was having liver issues. Is it anything serious? I am assuming that the Nivolumab isn't causing this. Can they lower the dose on the Votrient or stop it temporarily? Maybe they can try Tivo, as I hear that it is doing well in trials, or what is that trial that I am Alive is on? I forget.

Alice, i for one was glad to see the article as i must have missed the posts from TW referring to Nivolumab, so the name was new for me. Now I can seem like I know something when i see the docs! ;) So thank you for posting it and I don't think there is a post out there that is not worthy, I am sure others did not know the name as well. We all can't keep up with TW, I am not even sure he doesn't have two brains! LOL But I tell you, I am glad we know him and he keeps us on the up and up.

Please send John my love. I will pray for you both. These are hard times but positive things are happening and the doctor was very positive about being able to keep this a chronic disease. There are alot of other things in the works. I hope they can lower John's dosage or switch him to something else. Did they try Torisel? The doc said it is usually very good but not for diabetics. Big hugs to you both. Keep the faith, keep up the positive thoughts and let's get through this together! XXOO

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alice124
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John's liver enzymes are a little elevated but not seriously so, not enough to pull him off the trial. But the elevated liver enzymes issue has been a factor in many of the patients in this trial which is why I understand they are not continuing the votrient/nivolumab arm. The people that are still on the trial (only 18 I last heard) will remain on it as long as they achieve positive results or stabilization unless the liver enzymes become a bigger issue for them.

Thanks for your suppport Ange. If he has to discontinue this trial, we'll look into other treatments or trials. I personally would love to see him get some relief for the shoulder mets and wonder if the cabo trial might be in his future. Other than this trial (votrient/nivolumab), his only other treatment has been HDIL2. So that leaves many doors unopened. We just have to continue to look at this as a chronic disease, not a fatal one.

Continue to do the great job you're doing for your mom. She's so lucky to have you as such a great advocate. Thumbs up!!!!

Love back to you.

P.S. I'm glad to have the very enlightened Wedgie looking out for us and there to correct my unnews flash. Just glad he didn't yell at me for starting a new thread. :) Love ya Tex!

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angec
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TW fussing over starting new threads? NAW! :) You cracked me up with the point about your "un-news" statement.

If John has shoulder mets shouldn't they do the radiation? Why is this feeling like we went down this road before? They gave it to Fox for his bone mets and it really helped. I don't see where it would interfere with anything. Did you ask the docs Alice? Please forgive me if I forgot the reason, the fatigue is getting the Nestor me these days. I am so sorry about his pain. What do the docs suggest? Are they giving him the med to strengthen his bones? What was the name of it? Zometa? He is doing so well with the trial now, such a pity the shoulder is an issue. I wish they would address that for him and not ruin his chance on the trial. Maybe if you tell them the shoulder is really causing an issue. I will keep the prayers up, something has got to give. Feel better a john, is it one -putt? Oh, how about the tens unit, any help there? Xxoo Did they mention If it Is the Votrient alone causing the er issues or is it the MDX as well? Supposedly the new TiVo drug coming out has even less side affects. Have a good week!

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Texas_wedge
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I suppose at my age I should be flattered at having two young ladies spending time teasing me?!

Starting this thread did no harm. The name was "unnews" to some of us but probably real news to most (apparently including John's nurse, the excellent Monica - hope I've remembered her moniker correctly!) and the subject is a very significant one. It will be easier in future for, especially newcomers, to recognise the drug by its generic name, with no need for making the connection between the 3 different labels it's previously had.

[Having said that, I guess we're doomed to having to associate the new proprietary name(s), when it is approved and marketed (I hope soon), with the generic name and that won't be easy without some aide memoire - hands up anyone who can always remember that Avastin is bevacizumab, Nexavar sorafenib, Yervoy ipilimumab and Adriamycin doxorubicin!]

Ange, I didn't quite follow the arcane reference to the Argonaut Nestor but I suppose he might have been a bit fatigued when he allegedly participated in the Trojan war at the age of 110! I'm guessing that maybe you were the victim of a fantastical bit of predictive text (can't see that in the CSN s/w so I'm guessing you wrote it in Word and pasted it here?)

I share your hope that a solution can be found for John's shoulder pain - can't have golfers kept out of action! I'm glad you mentioned the TENS idea - must remember to try it on my right knee which is sore lately.

You raise an important point about side-effects - Alice, is it possible for the experts to isolate the origins of the side-effects, asbetween the nivolumab and the pazopanib with any degree of confidence?

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alice124
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I'm with you Tex. I'd love to see John get back on the golf course. Know of no better therapy for him.

Ange--as far as radiation--we were told early on that radiation wasn't in the trial protocol so they were reluctant to treat that way. But if this trial ends, that issue will surely be readdressed. Fox received radiation as you point out, but Fox is on a nivlumab (MDX) trial only at a much higher dosage than John is receiving in his current two-punch trial. Perhaps that trial's protocol allowed radiation whereas John's does not.

Confidence in side effects attributed to nivolumab and the pazopanib? I think they are learning as they go along, not much more than trial and error.

I could be wrong but I haven't heard anything about discontinuing the nivolumab and sutent arm trial. Tacyarts might know more about that. But if the sutent/nivolumab trial is continuing, that would tell me that the liver enzyme issue has been narrowed down to the combination of the two drugs -- pazopanib and nivolumab. If it was pazopanib by itself, I don't believe pazopanib usage would be growing like it is. But that's simply the logic I'm utilizing. More enlightened people may see it differently.

tacyarts
Posts: 73
Joined: Apr 2012

I'm still holding my breath on the issue of staying on the trial, they didn't guarentee me anything. I have no choice in the matter now because my quality of life is really bad with my leg pain.

angec's picture
angec
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Ok TW.. you lost me on the reference to the Argonaut Nestor. Did i have an out of body experience, because i don't have a clue when i posted that? LOL

And yes, we love to tease you and make reference to you anytime we can! You are a staple here and leader. And we wouldn't have it any other way! :) Besides, you don't give us much to tease about so we have to grab for straws. We think you are adorable, at least i know I do!

Now, a bit of concern for me. Why is your knee a bit sore? Are you drinking gator aid to be sure you keep the electrolytes flowing and taking your vitamin b complex? When do you see the onc? Be sure to put the knee down on the list for when you go in. How are you feeling otherwise? Any less pain? I am hoping you feel better.

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angec
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OK now i see where i wrote NESTOR.. LOL This ipad will do that to you. Once you type something in it goes ahead and changes the word on you after you spell check it and send it off. I meant to say that the fatigue was getting the best of me! Not nestor.. LOL You see TW.. only someone with your intelligence (and good looks) would pick up on that. But i like the point you made about him being in the war at 110. Something good came out of it, i learned something new. Now, let's hope the words don't get changed around again. Who knows what can come up next!

Alice, i understand what you mean. I am just wondering if there was a little room to sway since John is suffering so much and the mets don't seem to be getting any better or he is not getting relief. I think the bone mets are better served by radiation and was hoping they would allow it just to give John some relief. But i guess trials are trials. I will pray they have a change of heart, please ask again, just one more time. How about your local oncologist or is it the same one from the trial? I just feel so bad for him. Does ben gay even help or not an option? :(

Texas_wedge's picture
Texas_wedge
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There you go again Ange! What's this about John being gay?!

garym's picture
garym
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Joined: Nov 2009

Now it all makes sense;

Gay marriage and marijuana were legalized in Colorado on the same day.

Leviticus 20:13 says - "If a man lays with another man he should be stoned."

WOW, I wasn't reading it correctly.

alice124's picture
alice124
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Very clever Gary! Funny what you remember. . .
_______________

Ange - I initially read "ben gay" the same way as our Board bad boys, Gary and Tex. Planned on shooting you an email kidding you about it, but should have known "the boys" would beat me to it.

_______________

Ange - what happened to your picture?

_______________
Gary and Tex - And NO I'm not referring to the picture of John ben gay.

one putt
Posts: 72
Joined: Sep 2012

Alice,
Now that our little "secret" is out,would you mind stopping on your way home and buy me a bigger tutu.After all,I've gained 22 lbs. since my trial began:)!!!

foxhd's picture
foxhd
Posts: 2055
Joined: Oct 2011

How come something so serious can be the "butt" of jokes? I can tell my friends that if I'm sad and need an attitude adjustment I just go to a CANCER forum to share a few laughs. Is that wrong?
Also, I'm still unsure of the results from the radiation to my back and rib. My last scan had shown the mets were still growing. May have just been inflammation. I don't know how long before the answer is conclusive. Next scan is 3 weeks away. My pain has diminished significantly but my spine does ache. So we'll see.

A couple gay guys are standing naked at the urinal in a bath house. One guy looks over at his buddy and says," Is that a "nicoderm" patch on your penis?" I thought you were supposed to put them on your shoulder. His buddy answers, "That may work for some people, but I'm down to 2 butts a day!" I apologize.

angec's picture
angec
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This board is hysterical! TW, it seems that I can't help myself! Alice, I am so sorry that you had to find out this way! John, I should have just told Alice to try some liniment. You know the powerful stuff you put on your aching joints and it burns so bad that you forget about the pain? LOL 22 pounds since you started treatment? Are you taking Marinol? That would explain why Gary came up with that equation/scripture and tied it all together! Alice, since you are picking up a large TUTU for John, maybe you can check out the Ben-GAY on the way!

Fox, please don't worry too much. It is very possible it is inflammation and the docs do not seem worried about it. The trial will continue for you as you are doing very well in spite of it all. Try some meditation and bring your focus somewhere else for a bit. There is nothing you can do at the moment to change it and the anxiety is building. Have you been riding much lately or is it to cold for that now? Just think about the hug and kiss you will get from the little lady when you finish your visit. Please keep us a 'butt of it all. Uh, I mean abreast of it all! ;)

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garym
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Now you've done it, you're going to be sorry you got me started...

A teenage girl goes to the doctor. He places a stethoscope against her chest and says, "Big breaths." She answers, "Yeth, thir, and I'm only thixteen."

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

Good to see that one revived. Do you know where it originated? I remember it from 1957 (yes, the same year as Little Darlin' hit the US charts) and the doctor wielding the stethoscope was a certain Derek Jules Gaspard Ulric Niven van den Bogaerde, better known as Dirk, one of my favourite actors and a fine writer too. His old man was the art critic of The Times. The scene was very short but i can still picture it.

foxhd's picture
foxhd
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Joined: Oct 2011

Ange, thanks for the advice. However, my little mind spends too little time in reality. I may possibly be the last person still breathing on this board who needs any psychological backup due to cancer. I am the King of Coping. I can actively flip from my right hemisphere to my left hemisphere in a moment. I can and do place my mind in many places. Usually has to do with motorcycles, guitars, golf and exercise. Just missing my exercise. I've repeated several times that I have never asked,"Why me?" It is just a fact of life. Sucks. But a fact of life. I always feel terrible for new members that display so much panic. The only time I felt that way was when my first oncologist told me that I would probably be dead in a few months. I'll admit that did suck. But here I am sharing dirty jokes.

angec's picture
angec
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Joined: Mar 2012

Fox, keep the jokes coming! I am very glad to hear that you are "king" of coping! You have always been a good example for me, the caregiver, who is very prone to panic on the whole topic. Your post above is very comforting to me.

Guitars? This is the first I am hearing of it! Do you play and sing? My friend just went on a tour at the "Martin" factory in Pa. this week. 10k for guitars that all look the same to me (hope my husband did hear that!) but i guess they are worth it.

Gary, that was too funny! Dare I mention "leg".. any jokes for that body part? Uh-oh!

Alice, just saw your question. Yes, I took the picture down. I have to find one i am comfortable with, there are not many.

garym's picture
garym
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Joined: Nov 2009

What has a bottom at its top?

A leg.

_____________________________

First cannibal: Come and have dinner in our hut tonight.
Second cannibal: What are you having?
First cannibal: Hard-boiled legs.

_____________________________

Did you hear about the witch who went in for the lovely legs competition?
She was beaten by the microphone stand.

_____________________________

What has fifty legs but can't walk?
Half a centipede.

_____________________________

My uncle must be the cheapest man in the world. He recently found a crutch - then he broke his leg just so he could use it.

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

It's good to know nothing is off limits here. I have many politicaly incorrect funnies in my arsenal. Be warned! I love you all. Making me laugh at 7:30 in the morning!

angec's picture
angec
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Joined: Mar 2012

Ok Gary, you met the challenge! "EYE" don't suppose you have any others lying around? lol

garym's picture
garym
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Joined: Nov 2009

A Czech goes to the optician who shows him a card with the letters

C Z W X N Q S T A C Z

"Can you read this?" the optician asks.

"Read it?" the Czech replies, "He's my brother in-law."

______________________________________________

Optician: You need glasses.

Patient: But I'm wearing glasses.

Optician: Then I need glasses.

______________________________________________

Patient: I always see spots before my eyes.

Optician: Didn't the new glasses help?

Patient: Sure, now I see the spots much clearer

______________________________________________

Man walks into an opticians with a shoe box. The lady behind the counter asks if she can help him. He opens the box to reveal a 12 inch long turd.
"You should see a doctor, this is an opticians office!"
"I know, but every time I do one of these, my eyes water"

foxhd's picture
foxhd
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Joined: Oct 2011

A blonde walks into the opticians office for her eye exam. The doctor tells her to cover her left eye with her hand and then read the chart. She struggles to cover her eye completely but starts to cry when she is unable to cover it up well. The doctor shakes his head and says ,"Never mind, Just cover up your right eye and read the chart." Again she struggles. Moving her hand and fingers up and down and back and forth without success. So the Doctor has an idea. He cuts a hole in a paper bag and slides it over her head so that only one eye is exposed. He tells her to once again to "Read the chart." She looks up and starts crying again. The Doctor asks," What's wrong this time?" She says, "I was hoping for wire frames."

angec's picture
angec
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Joined: Mar 2012

And it gets better and better! I cracked up on those you guys! I laughed so hard i bit my "lip".. uh oh!

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