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Verdict is in........

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I have a CT scan with contrast scheduled for Friday at 9;15...used as a baseline for my protocol that starts next Monday ... I go in Monday for irrinotecan leucovorin then Tuesday for Avastin and leucovorin, a push then have my 5fu pump taken off Wednesday...
3 days every two weeks for the rest of my life.....Hmm,
Then he told me that they are having trouble getting Leucovorin (shortage...meaning there gonna jack the price up again))....that''s nice to know.....I told the Onc I bet the president would get it if he needed it and there wouldn't be a shortage.....
He then tells me that I didn't have to do it if I didn't want to....He really doesn't know how close he came to getting his *** chewed out...but instead I let him know that if it came to me getting it or someone younger with a better than average chance of enjoying a good life then bypass me and give it to them, but just don't tell me if Im not getting it...
I am looking at him and he tells me quality more than quantity and if quality is gone there is no reason for quantity......wtf is he thinking ?

OK end result, Im sending my original Onc a letter stating whats going on here and how I feel about it...I am however going to give it a week or so and see if its just me trying to cope with the soon to be change in lifestyle. Not sure yet what it is, but I wasn't in a very good mood when I got there, I guess reality is starting to kick in again..It is what it is but I somehow feel like I'm getting turned out to pasture and I sure as hell don't like the feeling I'm getting with this....I'm fixing to get on the phone soon and start getting opinions on options I may have if it shrinks or if it doesn't. I am certainly not going to be "turned out to pasture", and if I start acting as if Im chewing a cud, someone please slap me back into reality..............buzz

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I think WE know more about quality vs quanitity than this guy does, Buzz.

I'm really surprised he made that statement as bold faced as he did.

Leucovorin has been a national shortage issue for many months now. Four of my last treatments went without it, even at an NCI facility. Many people are getting hurt by not being able to have this available. When we pull the trigger we want all the bang for our buck.

But, it is a money issue and I was caught up in the net just as surely as the next guy and you as well.

Don't be surprised if the 5-fu "becomes a problem." I'm hearing there is now a shortage of this drug as well and people are being put over to Xeloda. The guys I talked to said 5-fu is relatively cheap to produce, but as you indicated, they are now going to put the squeeze on to get more out of us.

The downside to all of it, is that we, as patients, don't get the full treatment that our oncs recommend. It's a complete travesty. Maybe this is the new way of "THINNING THE HERD."

You can wait a week, but don't think your feelings will change. This guy acted with extreme arrogance and was thoughtless in his approach.

My concerns are for the future, because one day someone in authrity will be "making the decisions for us" regarding our healthcare and what we can and cannot have. In effect, turning us out to pasture as you said.

You're already in reality, so no slaps from mem, that would be insulting...you know as well as I do what the score is - I feel your thoughts and feelings from what happened are completely justified and you have every reason in the world not to be happy with the manner in which you were treated.

You know I hate this for you. Even though I've stared this thing down 3x time now, I'm fully aware that it will probably be back in my future - probably sooner than I expect. Hope not but with what I've experienced, it's hard to think it's all gone - just slipped under the radar for a spell.

I'm still trying to work full time and having these terrible dizzy vertigo spells - wife is on her way to drive me home now, they are so debilitating. It's hard to even type this, but wanted to respond.

I believe the other disease I've got is called Meneire's Disease - it's a progressive disease that attacks one ear or another until you finally go deaf. Then the attacks and dizzy spells stop. It's been gone 2 years now, but back with a vengenance. No balance - can't walk or drive - nausea - sweating and the espisodes can range between 2-24 hours. Sometimes you even wake up with it.

Even though I've got no real quality right now, I still want to try and hang around like you, in case things change. If cancer comes back on me.....

I would write that letter, even if it is a week from now. I wish there were more that I could say, but I've taken up enough of your time. I won't patronize you with any "fluff and puff" statements, only to say that I'm sorry you are going through all of this at this time in your life, when you are going through such an upheaval at the moment.

I hope there will be some surgical options that can get you off this 'chemo for life' plan.

-Craig

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

After reading all the leucovorin shortages and office surprises (Sorry, no injectable LV today...) on the CRC forums, I finally told my wife to keep a *3 month* supply of oral leucovorin, dry packed in the fridge. Some 5FU-LV and similar tests show relatively low incremental improvements with LV dose, e.g. 75 mg vs 150-200 mg LV per day where the first few milligrams count most. 25 mg LV per tablet is near an oral tolerance limit for many.

Oral leucovorin is essentially a sneaky way to get pricey levoleucovorin in your blood stream because the digestive progress only absorbs the levo-leucovorin, and leaves dextro- in the trash pile so to speak.

Oral leucovorin in the US has been ridiculously pricey in recent times, so we buy from the overseas sources. With our volume merchandising chains, the US should be one of the cheapest for a generic medicine (old vitamin) like leucovorin, say a 90 day supply for $10, at what I figure would be a 200% markup, cost being mostly for the bottle and compressed tablets.

buckeye2
Posts: 428
Joined: Jul 2011

Buzz, I am so sorry that things are tough for you right now. You said in one of your posts that your goal was to be at your sons graduation. Keep your eyes on the prize. Lisa

buckeye2
Posts: 428
Joined: Jul 2011
scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Ole Buzz,

I wish I had been there to slap your onc for you!

The drug shortages suck and are affecting thousands of patients with all sorts of diseases, not just CRC patients. It is all about money as the pharm companies have newer much more expensive "replacement" drugs they are trying to get approved by insurance companies. The insurance companies know the drill and are playing hardball all the while people are getting sicker and/or dying.

And I don't think the President would have any better luck than you! The FDA is not controlled by the President or Congress just like the Federal Reserve. They are the only 2 agenices that aren't. It is all a money ploy and is one of the sickest examples of US capitalism I have ever seen.

As far as being put to pasture, I don't think you will let that happen my friend. I do wish you would call The Cancer Treatment Centers of America in Zion, Ill. to see what they have to say. And trust me, I will knock you back into reality if I see you starting to chew that cud.

Can't wait to hug you in person next month.

Lisa P.

northernlites
Posts: 96
Joined: Jun 2011

Dear Buzz,
I would not let the arrogance of another human being get you down... When I first came on to this forum (which has only been a few months)you were one of the first who always tried to keep things in perspective for me. I always find your advice and recommendations very helpful. I love reading your posts to others as well. I don't know you personally but feel as though I have known you for years. Stay positive.. not only for yourself but for the family. :o)

tessa

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

I agree with all that's been said, and just wanted to let you know I'm thinkin' of ya!

love, Leslie

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

ahh it is so hard to comment from another country....all the rules are diff

like leslie.....all I can do is send a great big hug

do you remember in those dark winter days of golly who know remembers when....you said you had a rope and you were pulling us thru....most of us were on oxy that winter...Sherri...me..I think Nana was there.many others hold on..soooo

my point is is buzz thanks.hold on

hug ....mags

smokeyjoe
Posts: 1428
Joined: Feb 2011
smokeyjoe
Posts: 1428
Joined: Feb 2011

Buzz, sorry you're back in the battle. I questioned onc. nurses today about what happens when on avastin, she said it is administered after chemo. infusion, you get the push, then hooked up to bottle. At least that's the way they do it up here in Canada. So, basically you go on the Monday for blood work, Tues. infusion at hosp. then hooked up to bottle for 48 hours. Wonder why they have you come in for what seems like chemo. two days in a row. Suppose there are so many ways they can mix this up. Take care.

Lovekitties's picture
Lovekitties
Posts: 3348
Joined: Jan 2010

I can only imagine what you must have been feeling when your doc said what he did. Kinda like being sent into battle and being told, by the way we don't have any ammunition for your gun.

Sounds to me like you need to not only write your letter, but deliver it in person and make sure he reads it. Your doc needs to understand what your priorities are. He needs to understand you have a mighty motivation to not only survive but to thrive.

Prayers for you as you take this on.

Marie who loves kitties

PS here is a web site discussing shortages and potential alternatives docs should be aware of

http://fightcolorectalcancer.org/tag/leucovorin_shortage

Also see the FDA page on drug shortages and look at Levoleucovorin (Fusilev) 50 mg single use vials (updated 7/7/2011) section.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Hang in there! Don't give in to the dark pit! Hold on to that rope! And quit slapping me! I got you!! :).

Big hug Buddy!

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

there when Buzz threw out that rope and buddy i have been hangin on ever since.you know we all are holding that rope for you and we will be there right beside you to slap anyone you want us too....Godbless....johnnybegood

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

As far as waiting for things to get done, I understand your frustration. When my first "doctor" told me there was no hurry to have the port put in or start chemo "since I've had cancer for a while, what's another month or so?" I KNEW that if it was his *** on the line, he would have had things done yesterday.

Who knows why there's a shortage, it certainly shouldn't happen with medication where lives are at stake. Who cares if there's a shortage of Monkey Bread?

I'm not sure how I'd take a comment like "I don't have to take it if I didn't want to". If I had expressed hesitation about starting the new protocol because of whatever reason, then I could (maybe) understand it. But if it came from a place of trying to pass you over in favor of someone else then that's a different story. What, all of a sudden young people don't die from cancer? Did I miss something?

I would certainly talk to your original Onc about this. It seems like you have a good relationship with him. When one gets used to having some normalcy back in their lives after going through cancer (or other things I imagine) it's not a good feeling to have to go back on some other treatment. I can relate, I've done it a few times. I think you know how I feel about looking at things as "for the rest of [one's] life". You also know how long I've been "in the saddle" with this stuff. I know my treatment could be called chemo-lite at this point but I'm back to SK every 3 weeks come hurricane or earthquake. I probably have a better chance of getting run over by a taxi and dying from that than of anything else at the moment...
Hang in there Buzz.
-p

Brenda Bricco
Posts: 579
Joined: Aug 2011

Buzz,
I am fairly new around here but have to reply to your post because you are a huge source of hope for so many. Please hang on, not for us but your loved ones. I can only imagine how important a soul like your's is to your family.
I want to know WHO GETS TO CHOOSE? It is your life, your fight, why the hell would he think he has any right to decide when someone's life has lost it's quality. Please keep fighting because they don't know everything or how everyone will respond to treatment. GOD BLESS YOU BUZZ
Brenda

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

Just hoping you get the medicine that you need and find another doctor. Don't think that his attitude is something you should be dealing with. Good luck.

Kim

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Buzz, you will definitely NOT be turned to pasture. The nerve of some people. It's not you that needs the slappin.

Huggss buddy, gail

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

well............ you TOO know.... I will always be here for ya.... even if we gotta stand in a pasture.and chew our cud....

Jennie

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

It stinks that insurance and drug companies have so much influence in our battles with cancer. Even the onc can make a determination on who they think is a fighter and gets stuff is obsurd. We just have to keep praying for that cure in our life time!
Jeff

laurettas
Posts: 372
Joined: May 2011

Amen to that!

k1
Posts: 220
Joined: Dec 2009

Hang in there, O Wise One. Thinking of you and sending supportive thoughts your way.

K1

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

I may have been tempted to punch him in the nose.

I would not pay him for the consultantion and tell him to go sue my estate for the bill but that hopefully that along time in coming.

then I would slam the door in his face.

OR

I would bite my tongue realising I got few options, and I need the onc to dishout the chemo.

Its a hard call what I would say! all these treatment decisions.

I always try and think about the big picture, breathe peaceful breathes, control my temper and get the best out of a situation.

doctors cannot know what it feels like to have colorectal.

they can try and pretend they got cancer.

but they can never rely sit in the patients chair.

I guess their words can help often they hurt.

Maybe all onc's could try and empathise.
some oncs do, some don't even bother.

either way we, you, me and all the crc's are left with treatment and lifestyle decisions everyday.

next time you are told QUALITY OR QUANTITY I'd change the OR to an AND.

I'd say "can we not aim at QUALITY AND QUANTITY".

If you want to checkout the alternative universe try google "life extension foundation".
I am still reading their massive supplements and treatments guide.

My son broke my reading glasses, so its extra challenging reading at the moment. My folfox was helped by a range of supplements. they are their if you need them.

this world is just to wonderful not to fight. as the beatles said "love is all you need"

hugs,
pete

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hmmm...I would definitely let that guy know what you think of his pronouncements. What a poor bedside manner! Another doctor is in order, it seems like. You are far too vital and wonderful and needed to be put out to pasture.

*hugs*
Gail

Erinb
Posts: 295
Joined: Apr 2010

Poor choice of words at the wrong time on your doctor's part. Our doctor recommeded that we did NOT go to the Mayo Clinic to get ablation done on my husband's liver. He referred to it as spot welding. We did it anyway and ended up getting 'fired' because we didn't trust his advice along with some other reasons that were false. I guess it's a fine line about what you can say or question, but we are better off being somewhere else.

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