u/ChuckaChuckaLooLoo3

Edit to add: I'm a 67 yr old male in the United States with lambda chain MM on the Dar-V treatment plan.

So far, I'm past $800k since starting in April. More than half of that is "under review" by Humana. My running bill never goes down because they add a $65k Darzalex™ shot every week. And then there's the cancer center's administration bills, which I pay $200 every two weeks, but the total keeps getting higher no matter what. Those costs are not covered.

So, by the end of the year, I'll easily be past one million. According to my bank records, I do not have that much, not even in IRA, Money Market, savings/checking or stocks.

How is everyone doing out there with costs not covered? Do you know what your totals are? Are they insane? Will you ever be able to pay the medical bills? I know I won't.

ETA: Had a very long conversation with a rep at my insurance, it seems that some of these bills were not serviced correctly and they are re-submitting everything after June 1st. That's a big weight off! So basically I have paid around 9k so far, met all hosp and pharma deductibles which means I don't pay for anything until Jan 1. And the rep assured me that these errant bills will be resubmitted the same way as the ones they covered in full.

Found out in April that I have cancer. Been on chemo since April 29th. Chemo ends up making me so nauseous that I want to die. I can't sleep, can't eat, feel like crap all the time.

Enter gummies on May 2nd.

Now I micro-dose THC gummy 5mg every 3 hours. It totally gets rid of nausea. I am not really even party-level high, just slightly buzzed. I've been slightly buzzed for months now. All day, all night. I live in a world divided by 3 hour segments. And believe me, my body knows when that three hours is up because if I go to 4 hours, the nausea comes right back into play.

One day I decided to skip the gummy, just to see if I would be OK on my own. Huge mistake! The nausea was so strong my jaw was shaking. And on top of that, I got so hungry that I couldn't eat. Halfway through the day, I finally gave in and did another 5mg dose. Within 5 minutes the nausea was totally gone again.

Being a little high all day and all night can be rather odd. At first, I didn't remember any of my dreams. But I think as my brain got used to THC being in my bloodstream all the time, it settled down and now I have normal dreams and remember them. I also have a great appetite which most chemo patients do not. I also sleep really well, which most chemo patients do not.

My oncologist wasn't happy about my THC usage. He wanted to immediately prescribe Marinol, a synthetic THC drug. I said "No way". What I have works well, I don't need to try something else. I finally convinced him to chill on this subject and he ended up saying if it works, keep it up.

All in all, my THC gummies are a miracle. With Texas adopting the "no THC" law, I got sort of scared and stocked up. I now have a 2-year supply, just in case that kind of backward thinking spreads to other states.

The cancer center I go to has a system of setting up your appointments and giving you a calendar of chemo days, consults, etc. What I'm having a hard time with is that this is done without any discussion with the patient.

While realizing that timing is important in the chemo cycles, it still seems like such a different approach to what I'm used to where you can work out the appointments with the administrative person at the Dr.s office. Is this cancer center's system normal / is this the same pretty much everywhere for MM treatment?

ETA: Thanks for all the responses. I talked to the person who gets the scheduling today from the main unit. We were able to work out the next month fairly well and I think she got the point. And I learned that the person who actually sets it up is the staff pharmacist. She is the one that has to ship the drugs in the day of, so it has to be regulated and I get that. Just wanted to get the time of day out a bit later because we live so far away from the treatment center. So it is all figured out at this point and both sides are OK.

Been very hard for me to figure out diet, even with the help of a (almost useless) dietician. I have had a weight loss of about 7 pounds so far and I don't want to keep going on the chemo diet, thanks. I am trying to gain so I can be ready for SCT sometime next year.

I need some ideas for food and since pretty much everyone here is familiar with this issue, hoping I get some input.

Lately for me it's just been starches (crackers, tortillas, toast) and if I'm not too nauseated, eggs in the morning. Oddly enough, turkey hotdogs seem to sit well. Protein shakes are OK, but sometimes I can't even look at one.

Do you have a "go-to" food that works really well for you?

Currently, am in the 3rd week of chemo.

Seem to be trapped on some days in this cycle of hunger/nausea/hunger/nausea. It is horrible. I have blood sugar issues anyway (I'm hypoglycemic) and I have to keep a minimum of SOMETHING in my system or I get other symptoms that are just as bad. I wake up, I'm starving, I eat something and immediately I'm nauseous and when that passes, I'm starving again but can't hardly eat because of the nausea.

Has anyone else gone through this and what did you do to treat it?

ETA: Finally yesterday was able to get a script for anti-nausea med, Zofran. Wow, such a difference! Apparently, according to what I've been reading, Velcade/bortezomib can cause a "false" hungry signal to the brain, even if you just ate! So, unfortunately, that's still there but I'm trying to ignore it and just eat a saltine in tiny bites when it happens. However, that is much, much easier to do than put up with that constant nausea/hungry/nausea cycle. That seems to be something I have a terrible time handling, worse than a wound, the stomach injections or even my spinal compressions! It's incredibly mentally debilitating for me.

Let's face it, we're all having some kind of side effects from what we're putting in our bodies. Most of them are the normal stuff we've all gone through, but some of us get really odd ones!

I'll go first: Hot Hands! The palms of my hands get super hot! I am using ice packs wrapped in towels to feel normal.

It's never happened before. I am on the standard protocol (D-VRd) but I think I've narrowed it down to the Velcade being the culprit but who really knows for sure?

Talking to my oncologist once I was done with my first round of chemo. I was asking if there was some sort of picture we could get of whether or not there was any change or shrinking of lesions, etc. and if another scan would be done perhaps after the next round.

She said "No, we don't do any scans or MRIs until the very end of the 5th round of chemo. We do blood draws only to check the progress. That's it."

Is that normal? It seems like I remember reading somewhere that in the more high-end places (Sloan-Kettering, Mayo, etc) that they get an MRI halfway through chemo treatments. I'm wondering if those patients paid out of pocket for them.

What has your experience been with this? Did you get any mid-chemo MRIs or PETscans to check progress?

In the last week of a 5-week course of chemo here. Along with various other symptoms, I've noticed that my skin seems to hurt, especially my torso areas. It feels like it's burning up and when it gets into contact with anything, it hurts like I'm being rubbed raw, but I'm not.

Is this a normal side effect?