Chemo Quandry

[BrownBagger]

When isn't it a quandry?

Anyway, I went down to NYC to get my scan results yesterday, and my doc said that while my lungs appear clear (yay), she's keeping an eye on a swollen lymph node or something in the middle of my chest. The radiologist thinks it might have grown by 2mm since the last scan, but she's not so sure. She's been monitoring this thing for the past two years, so I'm not exactly sweating it out. But we agreed that even though I just had my 11th infusion of Erbitux/Irinotecan, that we're going to keep me on the juice for the time being. Fine by me. Last time I quit, I got new lung mets, so I view the chemo, which appears to be working, as a kind of short-term insurance.

Longer term, I have no idea what the strategy is, though she says the ultimate goal is to get me off chemo.

So that's pretty good news on balance. It was a lot better than I was expecting because even though I feel great, I always expect the worst (especially while waiting in the examination room for the doc to get around to seeing me. More on that shortly).

I do worry about the longer-term effects that all the chemo I've had will have on my body and health, but the more I think about it, the more I think, well, maybe not. I tolerate chemo well and have learned to minimize the side effects, so that it really doesn't get in the way of me living my life. A few minor adjustments is about all it takes to keep me rolling. And with experience, it gets even better.

So, I'm thinking, perhaps it's not doing much, if any, longterm damage.

Does that make any sense?

Back to scanxiety in the examination room. I used to pass the time by trying to picture all the different ways you could have sex on one of those examination tables, but yesterday I had some proofreading that needed to be done, and I found that concentrating on that helped keep my mind occupied and thus lessened my anxiety (a lot). I wasn't even drenched with sweat when the PA came in to check my vitals.

So, I recommend taking something that you can really concentrate on, as sometimes, as we all know, they can keep you cooling your heels in that little room for what seems like hours.

[alanams]

Good morning Eric,

I admire your stoicism during your treatment courses. After all of the research accumulated about cancer, so little is known about balancing treatment with watchful waiting. The case can certainly be made to use chemotherapy to prevent metastaces; however, the immune system also must be in top condition to control growth of cancer. We are looking at balance, that is what it comes down to.

I have my CT scheduled for tomorrow. I can view the reports since I use the clinical database for my work here. It's tremendously anxiety provoking to see the report status go from pending to competed. It's going to be a long weekend.

As for what to do in the waiting room, I find a great distraction to be working through problem sets for physical chemistry. It brings back the nightmares of undergraduate and graduate school.

Best regards and good luck, Alan

---------------------------------------------------------------------------------------------------
50 yr old M, metastatic adenocarcinoma of colon
Colon bypass surgery performed 7/2012
PT/CT scans showed tumor cells in liver, lungs and lymph nodes
Folfox and Avastin started 9/10/2012
CT Scan after 6 infusions, splenic enlargement, some decrease in size of liver and lung tumors.
Spenic infarct present; Avastin discontinued.
Finished 12 sessions of Folfox 4/2013, delayed 8 weeks due to low platelets.
4/2013 No improvement since last CT scan in 12/2012
** Herbal remedies in use since January 2013: Essiac tea, Coriolus versicolor, Ashwagandha and Black Cumin. **
4/2013 Consultation with a TCM master herbalist
4/30/2013 Started full TCM regimen. 5/19/2013 Started using Amygdalin (Vitamin B17). Added proteolytic enzymes on 7-11.

[Ashlee H.]

Everyone is so different on this journey. You are very lucky that you seem to tolerate chemo pretty well. After four years, the chemo has really taken a toll on my body. I've been on a chemo break for a few weeks now and am amazed how my body is recovering. It's just so hard to know which research to follow. My ONC said there are studies showing it doesn't really make a lot of difference if you go back on chemo at the first sign the cancer is growing....or let it grow a bit, giving one more time off chemo, and then hitting it. I've done it both ways, and the results were the same. I knock it down for awhile, but in a few months, it's back. The old quality vs quantity of life question. If I did well on chemo, I'd probably stay on it for longer periods of time. But it just beats me up and I have no life while on chemo, no matter how we tweak it. For me, four months on chemo, four months off chemo cycle seems to be keeping everything pretty stable for now. How I look forward to my off months!

[SoConfused]

yay to your lungs being clear ... celebrating this happy news with you and praying that the "thing" in the middle of your chest continues to be nothing.

Thanks for the scanxiety tip - I'll try that next time.

[Guinevere]

BB,
So thrilled for you that the lungs were clear and it sounds like the node might be something different that cancer. At least I'm hoping so. As far as scanxiety goes, I get that the night before my scan. Afterwards? The pics have been taken and there's nothing I can do about them. In the doctor's room, I think I chatter a lot at my husband. Like you, I find keeping my mind busy between scan and results to be the best way to defeat scanxiety.

We're just trying to keep me stable. I have my scan next Thursday and I'm hoping the new tumor's gone and that the old one is either smaller or at least hasn't grown. I haven't found a rhythm since I've been back on chemo but my blood counts have been better than they've been in two plus years and I know how to manage the side effects. It isn't easy but it's nowhere near the beat-up feeling I was going through last winter. I'm sure the cumulative effects will make that a reality as time goes on but I've learned to enjoy today and let tomorrow be tomorrow. Long term? Who knows... I'm balancing still being here with a beat up body with the very real possibility that, if I don't do the chemo, I won't be around. So let's fight on and deal with what comes when it comes is what I say. However, we can't help wondering what it's doing internally. I know I think about it from time to time.

God bless ~
Guinevere

[BrownBagger]

I was thinking, on my way back to the parking garage yesterday, that I don't have a typical chest situation. Having had two thoracotomies (2010 and 2012), I still have sore and numb ribs in the front. If you drew an eight-inch circle around the center of my chest, you'd outline the numb, sore zone. My thoracic surgeons both say this is uncommon. I think it's because of my lifestyle choices--cutting and splitting firewood, XC skiing and cycling--all of which directly impact that area of my body. So, I think I continually aggravate the "wounded" region of my ribcage, essentially keeping it from healing. When she mentioned "possible inflammation," I got to thinking that it may be related. If the rest of my chest area is inflammed, why not a lymph node? That's just layman's speculation and wishful thinking, but it might help explain what's going on. Of course, by the time I thought of this, I was on the FDR heading home.

I was concerned, a few years ago, that this was mets in my ribcage. But I had a bone scan, and all it showed was "trauma" to the area. Well, I've still got trauma to that area.

She wants me to get a PET scan next time I'm down in the city, but if it's just inflammation, I think it's going to light up the PET anyway. So, I need to talk to her before then to explore this possibility.

[raym]

I was thinking, on my way back to the parking garage yesterday, that I don't have a typical chest situation. Having had two thoracotomies (2010 and 2012), I still have sore and numb ribs in the front. If you drew an eight-inch circle around the center of my chest, you'd outline the numb, sore zone. My thoracic surgeons both say this is uncommon. I think it's because of my lifestyle choices--cutting and splitting firewood, XC skiing and cycling--all of which directly impact that area of my body. So, I think I continually aggravate the "wounded" region of my ribcage, keeping it from essentially healing. When she mentioned "possible inflammation," I got to thinking that it may be related. If the rest of my chest area is inflammed, why not a lymph node? That's just layman's speculation and wishful thinking, but it might help explain what's going on. Of course, by the time I thought of this, I was on the FDR heading home.

I was concerned, a few years ago, that this was mets in my ribcage. But I had a bone scan, and all it showed was "trauma" to the area. Well, I've still got trauma to that area.

She wants me to get a PET scan next time I'm down in the city, but if it's just inflammation, I think it's going to light up the PET anyway. So, I need to talk to her before then to explore this possibility.

I always have trouble determining some of the more obscure side effects of treatment. Does my abdomen hurt from chemo or was it due to the work out I did. I am tired from chemo or was it the face that we stayed out until 2:30 AM.

[BrownBagger]

I tend to blame it all on chemo, Ray, though I know that's not a good idea. But not being a doctor, what you gonna do?

Is this a heart attack or chemo? Ahhhh--probably chemo.

[mm66ny]

I haven't posted here in months (which for me is a good thing--means I've been living my life), but I felt compelled to this time:

How is it that no one had anything to say about your "all the different ways to have sex on the examining table" part in your original post? This needs to be dealt with.

My surgeon has one of those examining "chairs." It looks like a chair, but reclines, the legs lift up, it raises, lowers, can be converted into a flat examining table, moves in all kinds of ways. I have often thought "man, this would be great to have at home."

[mymom]

Glad you had good results. Hope chest thing nothing. And I will definately discuss with my parents sex on the examination table as a past time conversation.....that should be interesting. I might then leave the room.

[mjkelley]

I took a 20 month break from oxi but stayed on the 5FU although the onc kept asking if I wanted a chemo break, but since I was handling it well I was more comfortable staying on it. So last week I had a scan as it had been a year, my CEA hasn't moved in over year, so we thought all would be fine. WELL, two lesions in my liver have grown, one doubling and the other 50% increase. SOOOO it's back to oxi next week, it has been so nice being off of it, but you gotta do whatcha gotta do.



raym: I alwasys question too is it me or chemo. My blood counts are good, so I just figure it's me being out of shape, not the chemo.

[BrownBagger]

I haven't posted here in months (which for me is a good thing--means I've been living my life), but I felt compelled to this time:

How is it that no one had anything to say about your "all the different ways to have sex on the examining table" part in your original post? This needs to be dealt with.

My surgeon has one of those examining "chairs." It looks like a chair, but reclines, the legs lift up, it raises, lowers, can be converted into a flat examining table, moves in all kinds of ways. I have often thought "man, this would be great to have at home."

It was all a ploy to pull your butt out of CC semi-retirement.

Six kids, huh?

Nudge, nudge, wink, wink--say no more!

[BrownBagger]

Glad you had good results. Hope chest thing nothing. And I will definately discuss with my parents sex on the examination table as a past time conversation.....that should be interesting. I might then leave the room.

Why do you think they usually knock before coming in the room (reading your test results for the first time as they do so)?

[mm66ny]

Six kids, huh?

Nudge, nudge, wink, wink--say no more!

Seven now. She just turned a year old.

[mm66ny]

Oh, and I appreciate the Monty Python reference. Ever watch "the Argument Room"? Funny stuff.