Mikenh and Surgery

airborne72 said:

Pricing Issues as well...

I received a small box of resupplies a few weeks ago.  It contained 20 wafers, 20 bags and one bottle of adhesive powder and one bottle of crusting powder.  The invoice in the box indicated that Medicare was billed over $500 for the contents!!  Unbelievable.

I understand that all prices are adjudicated and adjusted, but I find it undefendable for someone to claim that a handful of plastic is worth $500.

Jim

I checked out pricing on Amazon and 20 wafers and bags would cost $200. The Cavilon Spray which I've bought from Amazon is $9/bottle and the Convatec Stomahesive Paste from Amazon is about $11.

ABC Version of the IV Bag Story including video with better background on the Puerto Rico situation. They also have an example of a cancer patient worrying about treatment ability.

https://www.cbsnews.com/news/flu-season-straining-resources-iv-bag-shortage-hurricane-maria-puerto-rico/

The second infusion was tougher than the first witrh side effects coming during the infusion. I had to take a nap in the lobby to try to clear them up before driving home. I took it slow driving home. I tried to clear some ice off the driveway but didn't have the right tool but I can exert myself if I need to.

I can see why Jim was going back and forth on the Adjuvant - it's rough stuff.

abita said:

My second infusion was much

My second infusion was much worse than the first also. And on the 4th, I went back in the blizzard via subway for my disconnect. They were very busy, and I had to take a nap while waiting to get the energy for the trip back. While I am tired the whole cycle, I went from the first 5 or so days of having to rest after getting up to feed my cats, to being able to do things around the apt after that. I am having 2 days of scans Thurs and Fri to prep for my liver surgery, and I am guessing these will exhaust me. Particularly dreading the PET scan. That then gives me 3 days to get things around the apt ready in case Tues they say surgery. 

That sounds like a pretty busy schedule. I know that my MRI scans were pretty tiring. 40 minutes on a flat table holding your breath and generally keeping still takes effort. I'm almost done with work so I'll take a nap in a bit. I do want to go to the gym to get in a walk and maybe some weights but I'm often overly optiistic about what I can do.

I was wearing gloves to use the computer but they were a pain so I started up a bunch of video processes on my laptop and it's using enough CPU to warm up the laptop which means that the keyboard and palmrest are warm so I can use it without gloves.

Mike, you might want to ask anyone from your family to drive for you during your infusions.  The first time I had the oxaliplatin, I looked like a drunkard walking.  My hand and feet were trembling, I don't know why.  My hand was very very numb I could not even touch it.  I was weakened by it.  When I arrived at home I would just lie on the bed. I could not even touch my ileostomy for draining.  It was one of those nightmare-ish days for me.  I would rather the Xeloda than the oxaliplatin.  And it gets discouraging when you have to think that in another three weeks time, you'll get through it again.  I only managed 5 out of 8 capox.

Stopped off at Whole Foods and picked up a bottle of Magnesium and a bottle of Vitamin K. One is 50% RDA (I'll take two of them) and the other 95% so one of them. I suspect that I probably need 200% or 300% around infusion times. These pills are huge.

I can understand why Jim was losing weight. I'm in a cycle where I don't feel like eating because of nausea and I need to change the bag. I can't drink things unless they are warm or hot. And I need to change the bag but I'm weak from not eating and drinking. I don't want to eat or drink because it makes the bag harder to change and I have to use the old bags because McKesson screwed up on the new bag order. So I just have to get the bag changed, eat, drink and I hope I'm better. The cold sensitivity doesn't help for sure.

airborne72 said:

Ileostomy and Chemo

You are spot on Mike.  It turned into a catch 22 with a continuous deterioration of my health.  I began to question my logic and sanity.  The logic prevailed after I read numerous scholarly journals that questioned the necessity of adjuvant chemo for someone with my rectal cancer staging and conditions.

It has been almost 30 days since my last infusion.  The cold sensitivity has disappeared but my fatigue remains.  I have managed to put on a few pounds thanks to pizza, cookies, and Hostess Twinkies.  Right now the primary debilitating factor for my restoration of energy, stamina and weight gain is this ileostomy.  It limits the amount/type of food (energy and nutrients) that I need to bounce back.  It also disrupts my sleep cycle.  This cold and dreary winter weather is not helping either.

One day at a time for all of us.  Hang tough.  This too shall pass.

Jim

I spent a lot of time in bed yesterday thinking about my sanity. This morning was better and we went grocery shopping. It was 16 degrees out, which, given recent temperatures, was not bad. My face did freeze outside though, as did my eyes. I spent time at the BBQ chicken heat lamps trying to thaw them out. I feel nauseous most of the time too. I should probably ask for drugs for that. I am more functional today and need to go to the office to get my VPN password and do some work. I also need to do laundry but I'll get some help with that. I'm really hoping that most of the symptoms are gone by tomorrow but it's more likely that it will take a few more days.

I need to bone up on research to make a case for dropping the Oxaliplatin levels and doing fewer cycles.

I'm not sure where you live but I thought that it was quite a bit south of where I am but maybe I'm wrong. The bitter cold this winter has been rough and it would be even without the treatments. Only fortunate thing is that we haven't had a huge amount of snow. I was considering going to FL or TX for a couple of months but that wouldn't be practical if I had to commute for the infusions.

I feel like I've lose a pound or two this weekend. I have ten to lose before I start to worry about it. Hopefully this stuff wanes over the next week.

I brought the electric tea kettle home from the office and am putting it to good use. I can't eat or drink anything cold and I don't like asking my wife to heat water for me when I'm thirsty. Right now I'm drinking hot water with pieces of ginger in it. That does help with the nausea.

Bunny822 said:

Nausea/Fatigue

Hi Mike...glad to hear you were able to get out...you are in New England? I am in Virginia and it has been unusualy cold here too...I am going to receive chemo # 8 tomorrow which is Folfox 5 FU, Oxi, and Leucovorin...I come home with pump x 48 hrs. I am nauseated 24/7 after chemo for several days but have learned to manage my symptoms. Zofran has helped on pump removal day...I eat ginger candy cubes from health food store, keep bottled water handy (at room temp) and kiddy juice boxes also room temp. Gingerale ale handy too as well as ginger, peppermint teas. Have avoided use of phenergan which just makes you sleep, unable to function with that...was advised to cut 25 mg tabs in half...still have not used this med as Zofran helpful. My MD eliminated bolus I was receiving prior to pump which helped reduce nausea significantly...perhaps your current dose just needs some tweeking...I am RN also working from home which I have done past 5 yrs and also use VPN...fortunately mental faculties still sharp no real chemo brain just fatigue esp 1st 2 days after chemo but med seems to wash out by 2 wks...I have not had surgery so I know your situation different from mine...but just wanted to you to consider possible antiemetic and possibility of your meds being titrated...Boost has helped maintain wt...first wk after chemo have to force myself to get proper intake...2nd wk I call my binge wk... LOL...take advantage of days when you do have an appetite...maybe multiple small meals...grazing throughout the day may help...certainly I would ask your Dr/nurse for guidance ...hope you feel better...read all your posts...are you an engineer perhaps? One day at a time...spring will be here before we know it...take care...Bunny

I'm in NH and the temps today are 10-25. So it's rough outside. We went out again for more shopping. I may go into the office as there's something that I need to do there that I can't do at home.

Sounds like ginger helps. I've been drinking it warm at the office and my daughter suggested buying the candied version from Trader Joes (used to eat them a long time ago). We were just there too - should have picked some up. I will talk to the oncology team about anti-nausea but I think that I really need to cut the Oxaliplatin dosage. This is too tough after #2.

Mike:

By all means, get some anti-nausea medication.  I had three different types prescribed, but only took Zofran.  It just turned out to be the closest to my bed and the easiest one to swallow so that's what I used.  It worked!

Just like you, I also experienced the increase in symptoms beginning with infusion #2.  Based upon some statements by others I was hoping that the subsequent infusions would be similar and that I would develop some sense of tolerance for the oxy.  Did not happen.  Infusion #3 was even more symptomatic and turned out to be my limit.

Each of us are different and unique.  Make sure your oncologist is aware of your reaction.

Jim