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I'm Mad: A Few Questions and A Vent


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I'll start with the questions, so folks could perhaps respond without having to read my vent novel:

1. Am I correct that there really is no "one best" course of treatment -- i.e. chemo alone is OK, radiation alone is OK and any combo in between or none....including length of time between treatments? That sound treatment is solely based on the individual and their progress? And that one or the other can be returned to, sometimes multiple times, over the course of treatment?

2. Am I correct to expect good coordination between the medical onc. and the radiation physician within that treatment plan or is it normal for the two to act rather independent of each other?

OK, now here's what's been going on to spark this:

Mom reacted the worst she ever has after her 10th or 11th cycle of chemo last week. Up to this point, she has done really super for getting weekly chemo. Last week, she suddenly developed a whole host of side effects (hot/cold flashes, tingling/burning in extremeties, unstoppable "runs" [i'm talking on the bedside commode every 15 minutes or so], unceasing fatigue, and a few more). We have been on-hold beginning her radiation until she can recover from a fall she took several weeks ago, but weekly chemo has continued.....

The "runs" effect was the worst and over the course of the last week her nurses at the facility she stays at have tried to get better meds to control it from the onc. to no avail (they got no response from the onc. last Friday or on Monday of this week) -- she's got a standing order for Lomotil as needed, but it does nothing to stop it. She also had just come off of Flagyl for C-diff last Wednesday and all the "runs" started last Thursday. She's lost 8 pounds so far and it is nearly impossible to keep her well-hydrated at this point.

I started out writing many more details about my vent that are important to my questions, but it's just too long to write in here. Summary is, I got an emergency order for another C-diff test and an order to go back on Flagyl for now (it worked before). After much runaround yesterday, I've got new visits scheduled next week for onc. and radiation re-simm......long story.....trying to get mom back on a course that she can endure, given what she's doing now and where she needs to go next (based on what she's wanted). If I have to, I want to consider whether she really needs to continue the chemo at all right now, when it's the radiation that is gonna tackle that tumour the best at the moment.

The nurses at the nursing facility have told me that they think she'll need something stronger than Flagyl and they had tried to request it before.......they are happy as big cheerleaders when I told them that if the Flagyl doesn't work, and they get no immediate response from the onc., they are to call me and I will take care of it (and ooooh, I will, you have no idea how I will) -- I have had enough of this runaround and the nurses just grinned big when they saw me in my barracuda personality, just p*ssed off, at this garbage!!!!! Let's just say that I got enough attention yesterday that the onc. himself called me and I didn't have to wait very long for that call either -- wouldn't you just love to know what I said to his staff and then him to warrant that???? :lol:

This last week was the first time I have ever heard or seen my mom seriously discouraged and wondering whether she can or wants to endure this. I refuse to let the major screw-ups in the system break her spirit or diminish her chances of getting what she hopes to get out of her treatment!!!!!

Hopefully I related enough; ooh there's so much more too.....if I didn't make enough sense to anything you'd like to say, I'll try to respond along the way.



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Poor ((((Linda)))),

First, you gotta know that I feel for you..............I do indeed. It's not enough we gotta fight this evil :twisted: disease, but to deal with incompetency or nonchalance...........well, UNACCEPTABLE. Unfortunately, I believe it happens more than we might want to believe.

Now as to your questions.......I am not an expert and really know LITTLE about it all, BUT I am very concerned about the stop-gap in your Mom's tx. These side effects MUST be addressed and I cannot even imagine your frustration at getting the brush-off. Tx is not a by guess or by golly deal. And I guess it can be stopped - both chemo and rad - and revisited later - BUT there must be some price to pay, I would think.

Short answer here, Linda, I just don't know........BUT it sure does not sound good. Is there a pcp who you could turn to for some help in getting things back on track? I bet there will be some experts along soon to offer some REAL help. I think Ry may have some good advice. Just know I am so sorry about all this and am with you in spirit


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I'll start with the questions, so folks could perhaps respond without having to read my vent novel:

2. Am I correct to expect good coordination between the medical onc. and the radiation physician within that treatment plan or is it normal for the two to act rather independent of each other?



L :

I'll limit my reply to question # 2 as it happens to be a pet peeve of mine. IMO, esp. as an out-patient, there is little to no real coordination b/w any of the mythical medical team members. Not just med onc and rad onc. Based on my experience personally and professionally it's a highly fragmented group of practitioners each acting, for the most part, independently and not really motivated to work as a team. It's usually you, the patient or caregiver, orchestrating any coordinating that occurs. This fragmented tx approach is also potentially dangerous. Duplicated, conflicting tx, etc.


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Lomotil is in the same class as Immodium -- isn't touching a thing.......unfortunately, Lomotil can spawn the runs too, at least for sure when used in conjunction with Keflex......she was on Keflex at the time the Lomotil was initially Rx'd, but has been off of Keflex for some time now (at least 2 1/2 weeks).

If PCP is her primary care physician -- you can scratch that one off the list for any real help as well -- no better than the rest of them and harder to get a hold of when things like this pop up.

We had a plan: 6 full-bore chemo, then 6 chemo (1/2 dose in conjunction with radiation), then finish off with a couple more weeks of nothing but radiation -- aggressive, "curative" approach, rather than pallative route. Things went awry with the fall on getting the radiation going as planned. Wasn't concerned about the extra chemo continuing at the time as she was tolerating it extremely well (much to my surprise and scrutiny)....until now.

Interesting that Flagyl can cause similar side effects to taxol.....didn't know that -- will watch for that as the days ensue. She had 11 days of Flagyl for her C-diff (and it worked), but the onc. says she might not be over it and often it takes more than one course to get rid of it. Hard to sort out what's really causing what when so many things can cause similar side effects!

I don't know yet what to tell mom -- I am hoping by next onc. visit (next Tuesday) to have some idea of what a good plan is at this point.....options, mom needs options to consider so she can make an informed decision (she ain't gonna' get the info. she needs outright from any of these docs., hasn't happened yet, so I don't see how it is magically gonna happen now).

So far, my "gut" says to stop everything until she is over this and well-hydrated and "stable" (could be at least a couple of weeks), then continue on with radiation, at least; don't know whether even 1/2 dose chemo is a good idea at that point or necessary, my goodness she's had 10-11 cycles of the stuff already! ???? I'm definitely not thinking that a long time off is gonna work because of her tumour particulars -- since last CT she complains about feeling full really fast and I am wondering whether it's related to her tumour pressing on something (don't really know!). Plus, with that lung collapsed, time is of the essence for radiation -- that's our hope for the tumour to go down enough to allow the lung to reinflate -- waiting a long time is not in her favor there, from what we know from our past conversations with the radiation doc.


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Just trying to help,

I know there are other problems but

for her arm before radiation.

could she sit near a wall with the bad arm

side of the wall and move her fingers (hand)

up the wall as high as she can and repeat

about five times every three hours.

This would give support to her hand and the

movement of her arm would not hurt as much.

I had to do that movement to get my arm up

after an elbow dislocation and six weeks in

a cast.



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Do you like the onc? If yes, ask him what to expect by way of management. There should be one person who coordinates your treatment. In my case, it's the thoraxic oncologist. I also see a neurosurgeon and a radiation doctor. My onc is always aware of the treatments of the other doctors and they work together to ensure there's no conflict.

Tell him what you expect! If another onc is better suited to your situation, then make a change.

Good luck is helping your Mom.


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!. Yes, there are certain protocols, but there is not a "best" for lung cancer. The treatments have to be tailored to the patient and his/her response both to lowering the cancer and to tolerating the side effects.

2. Yes, you should expect coordination. BUT, let's face it, it is not always there. That is why each patient needs an advocate (and you are a good one for your mom) to run point and coordinate things.

When Lucie was having her port installed, the med onc said, "Get the surgeon to install and let me know when it is installed." We the went to the surgeon and he said, "Just let me know when the onc wants to start chemo and I'll schedule the surgery." I stepped in.

Don: "Do you think you could call the onc and you two get together on a schedule?"

Surgeon: "Yes, we could do that."

Don: "Do you think you could call him today?"

Surgeon: "yes, we could do that."

Don: "Do you think you could call him right now while we are here?"

Surgeon: "Certainly. I will do that now."

So, yes, we have to work the system and be sure it is working for us.

Hope your mom gets some relief soon. Don

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I agree with Don. For certain stages and types there are protocols, it's not one fits all.

It also sounds like your mom was pretty sick when first diagnosed and then has had several serious problems. ( Low O2 sats and needing blood transfusions) These would and could make the doctor alter the course to what she tolerates. A good doctor would do that.

Prayers for her good response. This is such a tough battle.

Donna G

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My experiene has been and this is what I know of.

1) Sometimes if enoght time has lapsed you can retry a Chemo Regiment again and It MAY Work. No guarantee though.

2) My Chemo and Onc Were separate depts and operated as such (DEbs Anyways you know what I mean) But she had separate treatments not same time.

30 C-Diff Deb had last fall ICU for 3 weks it was so bad. @4 hour a day Saline fluids. Gained 25 pounds. Protein By IV to get all the excess fluid out.

Meds were Flagyl, and vancomycin + her usual Regiment also on Potassium when released. Hope that this helps some. Saying Prayers For ya all

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Ok, not a great day for me here: I am not convinced that I can advocate and coordinate this mess at this pace much more -- I am pretty much crying right now (too much overwhelm here and I am now well-past the initial dx shock stuff). There are too many other things I have to tend on the homefront, my dad's estate mess, and now it's spring....I don't have the help around here to just keep dropping everything at the turn of a hat; when I schedule the help I need, I need to be present with them -- I just get things set up and everything falls apart every time. It's mom's place and her animals and she isn't interested yet in allowing me to make some changes there to alleviate what I have to do. Local folks keep telling me to sell things anyway to alleviate things for me, but I just can't bring myself to do that: those animals are her heart and soul and important to her will to live as much as the rest of this mess is.

Hasn't helped when other strange things are happening like mom's Rx insurance turning up as expired twice now -- it isn't, it is the problem of her benefits office (3,000 miles away), but when that type of stuff happens, it needs fixed ASAP because it takes about 3-4 days to get it right again.....imagine what happens when new expensive Rxs need filled in that time.....is happening now, again......

The coordination issue and appointing the medical onc. to follow-through has been what I have tried for so far and obviously it isn't working well enough -- he is really the hub right now, because I can't depend on the family physician for that (been there, done that in the past with my dad and...well, let's say, that person will NEVER be my doctor even if they are the last one on Earth). Nice person, lousy family doc., in my opinion.

I like your approach Don, maybe I just haven't asked that way well enough on an appointment-to-appointment basis....but I get the impression that he doesn't do or isn't used to doing that kind of coordination. Plus, let's consider that the onc. looked at my mom and me last week and said "so, what's your plan here?" (re: chemo/radiation future). I was too dumb-struck to say much of anything at the time.

I am better off training this fellow to what I need than starting over with another unknown doctor -- this doctor has checked out as experienced and competent in his field and I already know I like the radiation onc. from past experience with him (getting past the nurses is rough). This chemo onc. is notorious, however, for not being the most communicative fellow ("insider information").

What's also scary is that I can no longer guarantee that I can be at every appointment as I have been -- way too much happening for me to guarantee that anymore and I don't have a stand-in advocate for me at present like I did with my dad when I couldn't be there (wasn't my mom).

OK, I'm rambling now.....at least dumping this stuff out of one's head and into print must help somehow.

Who knows? maybe this setback will be what we need for that arm to heal enough for the original radiation plan. PT/OT continues during this: she's got range of motion now, just can't keep the arm in the ideal position long enough yet.


P.S. TY Randy...you posted while I was writing this latest novel chapter...that info. is good for the "back pocket:" already watching to see if I am gonna have to get mom IV fluids....day by day there....so far, not yet.....

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DEb got so much fluid in her she gained 25-30 pounds of water in 2WEEKS. Protein took it off in one week. Extremities were swollen and Discolored; God, I WAS SO MAD About that. Be careful if they do it and mke sure it is a slow drip IF THEY HAVE TO DO IT! hope not! Saying Prayers again

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