My Introduction

My surgeon placed the port perfectly. Have not had an issue with starting the infusion. One nurse said it helps if I turn my head away and lift it – seems to help getting things going.

Even before the port, the steroid kept me wired all night. Tonight seems to be no exception. I frequently don’t get to bed until 4:00 – 7:00 am. A big hit on a work schedule. I’m retired now but was on full disability once CCA was diagnosed. I did a little work, maybe 10-15 hours a week, mostly from home on a special project. Kept my mind active.

Anti-nausea drug is administered during my infusion – works for me just fine.

Julie’s right about co-workers who “tough it out” and come to work when they are sick. More than once I’ve seen it literally work it’s way around an area, jumping from cube to cube. Yeah, I was part of that chain. Did I go to work? Yeah. Do as I say, not as I do. Your immune system is weak. Don’t take chances.

Ginger ale is right up there with chicken soup. Has to be at room temp and flat for best results.

Keep fighting Matt.

Duke

If your appetite drops, you need to graze. Small “meals” more often. Keep your weight up. I make up hot chocolate using breakfast protein powders.

Sennakot-S can be your best friend. I now use the generic version from WalMart.

Crackers with peanut butter – yes!

I started on gem/cis but stopped after one round. Onc was afraid of side effects. Went to carbo/gem.

If you get tired at work, talk with your supervisor (and people you work with – as a manager you probably have an office with a door. Tell them when the door is closed, don’t interrupt – they will understand.) and explain the facts of life. You are doing your best. Maybe agree to a longer work day or work from home (Should be easy to do – managers always have paperwork to do.) to make up the “lost time” while you need to rest. There has to be a way to make this work for both of you.

Matt,
I know that you are aware that I had trouble with access of my port and it being very uncomfortable for as long as I had it. HOWEVER, that aside, getting the port is still a no-brainer. We would have taken out and replaced the port during my chemo, which I would have been fine with, except by the time we decided the placement was a problem, I was nearing the end of my chemo, with only 4 and a half infusions left to go. To do that would have required going off of my blood thinner (Warfarin) for blood clots I’d had at the beginning of chemo treatment. I, along with the agreement of my oncologist, decided that the most practical thing to do was to punch on through the rest of the chemo using the port…no matter how many attempts it took to access…and I’d just “get through it”…after which, we’d have the port taken out immediately. That is what we did, because IF I ever had to use a port again….we would have another one placed, which hopefully was seated better and had easier access.

Nausea: You will get nausea meds probably in your IV before they administer the actual chemo (Gem/Cis…if that is what you go with). I did not have any nausea during the first round , but did have nausea (dry heaves, but no vomiting) about 3-4 days after the day one (Gem/Cis) part of a 21 day protocol. Each round, the nausea seemed to come earlier and last longer through 6 rounds of chemo. The last two rounds, it was a daily ritual to dry heave in the morning and very, very occasionally in the evening. I sometimes would have nausea in the daytime during round 2 and beyond in the days around the gem/cis chemo, though I never dry heaved or vomited in the middle of the day…only in the morning…or just before bed. The more I moved around, the more it seemed to happen.

Things to do to lessen the nausea:
Quese Ease: These is an inhaler type device (think slightly larger than a lipstick container) which we found at the local cancer center store and also at Walgreens at the motion sickness medication aisle It has some ginger in it….and is without prescription, but something easily slipped into a pocket. Cost is about $20.00 . I’m sure you can find it on the internet as well…possibly with less cost. I found that when the nausea wasn’t too bad in the middle of the day….holding the open container under my nose and inhaling did lessen the nausea sensation.
Atavan: This is a prescription for a drug that is commonly used for anxiety, but also works to aid in reduction of nausea and vomiting. As I got further in to the rounds of chemo…probably about round 3 or 4, I used Atavan occasionally to control the problem, which it did quite well. I did not use it round the clock…only when needed. It usually took hold about 15-30 min. The dosage can be adjusted. I did not find Atavan to alter my ability to do anything…either physically or mentally.
Gingerale: Sipping on this seemed to help when nausea was on the light side. Sometimes, it seemed to be better when it was room temp to help with nausea. It may also help if you open the bottle and let the fizz die down,. The reason for this is to eliminate some of the gas/bloating that might occur.
Omeprazol (aka Prilosec: My oncologist started me immediately on Omeprazol, the generic of Prilosec, to try to avoid gastric problems. By doing that, the idea is to cut own on uncomfortable stomach sensations that might affect comfort (which would affect ability to work)
Ritz crackers and peanut butter: Besdies the obvious of getting some protein, the combination seemed to hep settle my stomach and not feel nauseous.
Stool softeners: My first oncologist had me get a couple stool softeners and a script for a suppository…”just in case” of constipation. I never did use one, but it was good to have them handy and not worry about going out to pick up something if I was feeling badly,

The day of chemo, AFTER CHEMO, I generally only wanted to sleep a lot. I occasionally felt very cold, for days afterward, so keep something at work to wear while you work, just in case that should happen, just to be comfortable . If you are given steroid in the preliminary IVs on the day of chemo, you may be jittery for about 24-48 hours, until it wears off. In addition, that may make it hard to fall asleep at night. So, my recommendation is to go ahead and nap whenever possible, the first 24-48 hours. If you’re working the day after chemo, just know that you may have trouble going to sleep because of the steroids. Movement was not my friend for the day of and after chemo…that is, the more I moved around, the worse I tended to feel. If you have a sitting job, that may not bother you. However, once I was past that first day, I was pretty good the 2nd day…though not up to full speed. Then, by the third day, though I occasionally felt nauseous to the point of dry heaving, (and I mean really for very short periods of time usually only once a day), I did various things such as volunteering for an ongoing fundraiser …taking money, making food, etc. I wasn’t a ball of fire, but I was somewhat productive.

If your hemoglobin drops down too low, you may find yourself getting very tired. At that point, napping is essential…whenever you can…so at lunch breaks and if you have coffee breaks….try to at least shut your eyes and shut down your mind for a while. Hemoglobin that drops really low can leave you short of breath with very little activity…but when it happened to me, I was fine sitting…just couldn’t walk more than than about 10 feet without getting short of breath, At that point, I required a blood transfusion to bring the hemoglobin back up a couple points.

And…the last thing I can think of right now…is if you are working in a company with a LOT of people….or for that matter any people during the usual “cold and flu” season, I would have a face mask available to wear….to try to avoid breathing in stuff that the sick people who come to work anyway are “sharing”, and…..I’d also have a very large pump bottle of hand sanitizer on my desk…..and use it…after touching ANY thing that someone else has touched….be it a piece of paper or pen….but esp something like a computer keyboard or mouse. It may seem like overkill, but it’s worth it not to catch something that can make you very sick when your defenses are down from chemo.

Julie T.

That, Matt, is an excellent question…..and it makes no sense to me either. Unless…..they expect that the side effects of the trial drug to be potentially more serious than Gem/Cis and thus , “First do no harm.” That’s just a guess. Of course, in my mind….Gem/Cis does plenty of harm with no guarantees either(though you know I did it anyway) and I personally have dealt with blood clots, transfusions due to low hemoglobin, probable hearing loss and probable kidney damage.

I’m not familiar with the trial you mentioned…but will look that up. Is that the trial that Melinda is in? If that’s the case….getting the Foundation ONe testing done is really good to help cut down on time….and good to know in general in case it shows up something really helpful.

Julie T.

Matt, you know that I do love Mayo Clinic and trust them, but as much as that is true, sometimes there comes a time to get another opinion and this may be the case. I broached the subject of a consult with another doctor….either at Mayo or elsewhere if my CC comes back, and he said he would facilitate that happening and do everything he could to get me in to see whoever I wanted. It doesn’t mean you have to change …to move away from Mayo….but getting another opinion or two may be a good idea at this point.

As to the abdominal scan…..it is my understanding that they catch at least part, if not all of the lungs with this scan. At least that has been the case in my abdominal scans at Mayo. However, since you’ve had a recurrence, I think you’d want to know what, if anything, was going on elsewhere in your body, to have a baseline in advance of any other treatment….to know that the treatment was working or not after the next scan.

Did they refer to the abdominal recurrence as an ascite?

I don’t know about resecting the abdominal met. ……if in that location it is not possible?……or being to the abdominal wall, it means that it’s likely growing microscopically in other locations already, so hitting it systemically makes more sense. I don’t think it is possible that they could know the latter for sure….it’s just a very educated guess. I personally think that in that case, it ought to be up to the patient. Heck, they make us choose on whether to do chemo or not, right?

I’m glad to hear that you’ve contacted Foundation One. That’s a super idea to see if you can find a targeted treatment for your recurrence.

Take care, Matt. Let us know what’s happening with this and what you find out. Maybe someone on here has some info about resecting this small regrowth.

Julie T.

Dear Matt,
Sending you encouragement, good thoughts and prayers for a clean scan! Hoping you can have some peace and calm leading up to it……that darn scanxiety gets the better of us all at times!! Hang in there….I will be thinking of you and looking forward to your excellent report!
Melinda