It's always something... me, too...

[skypup]

Went for my last scan to find progression and accepted that I'd now be on irinotecan without breaks. Not willing to crash my QOL for the long haul, I requested a lowered dose. MDA doc ordered it at 67%. Substitute local doc added Xeloda and kept iri at 67%; however, he changed my dex from 4 back to 10 without telling me (grrr). Went in last week to see regular onc with the good report that Xeloda plus reduced iri was bearable, but please reduce dex to previous level. Okay, on we go.

Not so fast: today I am sick. sick, sick. I went and looked at what they gave me yesterday. I still got the 10mg dex (sigh, but no big deal.) Then I looked at the irinotecan. FULL DOSING -- WTF??? This is after she was saying she didn't want to increase my smaller dose any to keep an eye on some Xelosa/iri interactions she is worried about.

Do I have to watch every single step, every single time?! I have had 3 good regular docs in my cancer career, but if I didn't keep tabs there is no telling how much extra suffering I would do. Actually, I'm not exaggerating when I say I think I'd be dead by now if I didn't stay involved. BUT EVERY SINGLE DETAIL???

I hate cancer. I hate the business of medicine. (I love our support for each other.)

[KWT]

Sorry theresa, it is always something.

[Nik Colon]

Definitely need to complain to someone, that is very irresponsible and dangerous!

[Moon]

I hate cancer and I hate to have to check what the doctors and nurses are doing!

[MamaN]

Sky pup
I agree it's always something! If you don't watch out many mistakes are made , they write wrong things on charts . It's friggin redicilous ! Always have to advocate for yourself .. It gets so tiring sometimes!

[bitchslapped]

Do I have to watch every single step, every single time?! I have had 3 good regular docs in my cancer career, but if I didn't keep tabs there is no telling how much extra suffering I would do. Actually, I'm not exaggerating when I say I think I'd be dead by now if I didn't stay involved. BUT EVERY SINGLE DETAIL???

No kidding...there may be some truth to that statement. Communication & follow through. I don't think that is too much to expect when the clinics are so effecient in processing those checks for payment.
A patient deserves to have confidence in the tx discussed is the tx that is delivered & allowed not to be @ the top of their game every single minute. It's enough comprehending tx options, scans, labs, making decisions, face adversity, payments for services...In other words...just be the patient in the chair on those days & allowed to just be sick.

Best Wishes
bitchslapped

[justin case]

What I want to say may be too crass I wonder if chemo drugs, are charged by the amount given; It is something I've been contemplating The fear factor alone, would make people more willing to accept what the Onc says.
I hope you get to feeling better PUP, butt I have a particular thought in my head, that always comes back to the doctor"s profit; ( Or THE FACILITIES PROFITS)
The doctor may have no control, over the facility's protocol
Keep your eyes open.
Michael

[skypup]

Thanks for your understanding and support, guys. I really don't know how I'd manage without you. And without this forum, I wouldn't be nearly as educated about my options.

[Badass]

With everything else you have to worry about, couldn't they take care of business? My goodness! I hope this gets straightened out soon and you get the care that you deserve.

Jane

[cmrl]

Unbelievable! I have been so upset with my team. I just got my dx straightened out in my chart. All this time they had the tumor listed In the wrong spot. I've been wondering if there are professional advocates one could hire. I read the posts here and I'm amazed at your knowledge. Good luck to you.

[CRguy]

Thanks for your understanding and support, guys. I really don't know how I'd manage without you. And without this forum, I wouldn't be nearly as educated about my options.

AND the ongoing discussion only makes it more important that we be our own best advocates ( or have a buddy with you who knows shit from shinola and advocates FOR you.)

stepping off soapbox temporarily !

Keep on truckin' Puppy !

Cheers
CR

[peanut_8]

You guys shouldn't have to worry about getting the wrong dosing. I'm really mad that you DO HAVE TO. That is frustrating. It makes you feel bad for people who can't watch out for themselves.

[tchan8888]

Hang in there sp!

[Voxx66]

In a word: yes. You (or someone acting in your interests) have to watch every single step every single time. It sucks but considering what we have seen go on - the alternative is a succession of mistakes.

[pukalania]

sorry Skypup...you are quite right and this happens all over the place...i feel like a contant buggah watching over the shoulders of nurses..docs..aids etc...but there were so many mess ups in my hubby care that i can't stop checking stuff...i know sometimes the nurses are annoyed..to always answer my verification questions etc...but i bring them donuts ... on top of it..i don't know if it's just us or it's just the relaxing way of living in Hawaii...there is no rush man..like on chemo days i gotta call to make sure they order the meds and that the doc office sent them the UA..so we don't have to wait 2h for 30 min infusion...anywhos..sorry for adding to the rant..hope you feel better..irri is not fun..what helped my hubby a bit on it was a scalopine patch..good luck xoxo