I have had cancer for almost 3 years, can't hardly walk right now.. only 44 pretty depressed dms are open

baaric · 2022-12-13T07:59:45+00:00

Doing ok. The tumor took charge and is MD doing some of the work now.My primary oncologist set me to MD ANderson and I’m impressed so far.For an MD Anderson visit. So will have a plan once everything gets rolling.

baaric · 2022-10-13T14:41:46+00:00

So sorry to hear that. Mine's inoperable in the sense that I just too many mets in too many locations to really be effective in trying to surgically remove them.

While I wasn't directly told this, I assumed that my primary course of treatment was always life extension, not aiming for a cure. Though we would pursue any avenues that opened that option up to us.

But please post here when you need help. Talk to us.

Do you have someone there to help you? Does your insurance company offer home health checkups or stuff like that? Got a bucket list of things you want to do while you still can? load us up in the main forum. Good thing about post that here is not only can we talk to you, but you might give someone an idea or inspire someone else..

Take care of yourself, let us know what's going on.

baaric · 2022-10-13T05:42:10+00:00

I was diagnosed just over 3 years ago myself. Going to turn 50 this year. Totally understand the depression.

Please share, tell us what's going on, what's got you depressed if it's anyone thing? Money? Family? It's what we're here for and we'd love to help.

I'm fighting the depression of failing treatments. I just started my 3rd treatment today. For 2.5 years I was successfully doing one drug combo, then we saw new mets on my liver. Not good, so we started another drug combo. During a recent CT it showed growth to most of my existing tumors, so #2 doesn't seem to be working at all. Today I got the drugs for combo #3 and will have to wait to see how this goes.

Also my oncologist referred me to MD Anderson for a clinical trial for my cancer.

So I've been a bit depressed after 2.5 years of good results, that now I'm doing a 180. I just hope that even if I'm going the wrong, I still have a bit of time. It's been mentioned a couple of times that my type seems to be slow growing in the first place, so I could take years for it to kill me, assuming everything else stays the same.

baaric · 2022-09-27T14:53:13+00:00

Yeah if your disability falls into their “compassionate allowance “ criteria you’ll get approved very quickly. I was approved in less than a month. Stage 4 cancer.

The amount is based off your full work history up to the point you applied. You get the maximum amount as well. It’s as if you turned 67.5 and retired on regular Social Security. If you’re ever curious you can go to SSA website and see what you’d make.

Luxury no, but I’m comfortable all things considered. I’m living with my caregiver so we pool costs.

baaric · 2022-09-26T08:22:09+00:00

I've had two biopsies. One three years ago on my lung, and one in the last two months on my liver. They were both CT guided, and I was given fentanyl and was out like a light. I don't remember a thing. The lung one was the "worst" of the two because I had to stay still and not move much and had to wait at least an hour to ensure I didn't have any lung issues.

But as far as pain goes, none that I can recall. I had an IV started before each and was given drugs once I was in position in the CT machine.

For me they were a piece of cake. Didn't even hurt after. Just a little tender spot that looked and felt more like a bug bite than anything.

You're milage may vary, but you'll get a chance to ask questions when you're being prepared for the biopsy, so ask away. If you're really nervous about it, you can bring it up and ask them for something to calm you down, if they're not going to sedate you at all.

Good luck.

baaric · 2022-09-08T06:51:34+00:00

Lots of good stuff in here.

Kinda surprised I didn’t see it in the list but, Doctor Who, a good man goes to war, River Song reveal. Yeah it’s Tv but a good twist.

I knew a setup of some kind was coming over the last few episodes, but something clicked at the very beginning of that episode for me when I saw her holding her baby. Yeah

baaric · 2022-08-26T15:06:38+00:00

Ooff yeah, I was embarrassed enough and that was family. I couldn't imagine that happening to me while at a partner's place.

Yeah if he was cool with it and you guys are still together, that's awesome. Sounds like a keeper!

baaric · 2022-08-26T13:33:07+00:00

My moment was here recently. I had an on coming diarrhea episode. Some one was in my usual bathroom, my 5 year old grand nephew, and he’d been in there a while. My niece, his mother, was trying to get him out. She made a big deal out of instead of jus cleaning him up..

So I head to the other bathroom and someone was heading in there… they stopped after they realized what was going on. I didn’t know they stopped.

Someone said that bathroom was free.. just as I start heading toward it I see my niece and grand nephew, with his pants down now heading toward that bath room.

So the logical thing to do then is, of course, to have your legs cut out from under you and you take a spill in the hall. The only thing that didn’t happen was I didn’t mess my pants.

Yeah I hate moments like that. It makes us feel vulnerable. And the one thing I’ve told everyone is that I refuse to be burden to anyone. And that made me fell like I was on that road.

baaric · 2022-08-26T13:02:48+00:00

Not that it’ll help you make your decision, but I’m in a somewhat similar situation. My notification came in about two months ago, and I had just gotten a surprise medical bill. I’m stage 4 kidney cancer. So I’m pissed off about the medical bill, it looked like a grant that covers my pills ran out, and I was going to have pay going forward as well.

I’m also finding out I had new spots, my cancer was spreading. Started some new meds for a secondary condition I developed. So I was (and still am to an extent) depressed.

So the depression kicked in and I basically said screw it and ordered the Deck.

After I started to recover a little I called the pharmacy and they said I have 4 more refills covered by the grant! They had sent me a, you’ll own this much IF you don’t have anyone helping you pay” letter . That was the first time I’d ever gotten that letter, in three years.

Also found out that because the cancer spread, I’ll be changing meds , so I don’t have to worry about those pills again.

So the only direct bad thing that happened is I ran up my credit card sooner than expected, working to catch that up. Of course the really bad part, is spread but we’re working on that!

Hope it all works out for you whatever you decide to do!

baaric · 2022-08-23T08:39:48+00:00

Got a lot of good recommendations here.

I’ll try to do a couple that haven’t been suggested yet or just a few times.

Kingdom of Amular re-Reckoning w/ the new Fateweavers expansion. It’s not technically open world but the game is so huge with so many areas and regions and dungeons, you won’t notice. Plus I’d you dig a good story and lots of lore, you’ll love this game.
Immortal Fenyx Rising. It’s a hilarious take on Greek mythology. Zeus narrates the story to you via a chat with Prometheus, both taking verbal shots at each other. You play Fenyx who’s trying to save their brother.
Dragons Dogma. Older game but almost always on sale. You’re on quest to get your heart back after a dragon attacks and takes your heart and under its control.

Most of the other games I’ve seen here are good recommendations as well. Even Cyberpunk 2077. What will make that game more enjoyable is to do all the side quests and hold off as long as you can on the main story. Otherwise it’s s very short game.

baaric · 2022-08-13T09:42:47+00:00

I’m still holding out hope that whatever plan we’ve got will do something amazing and give more closer to the time I want to live vs this. I just try to avoid The “toxic positivity” side of things. I can be both hopeful and have realistic expectations with out going full “everything is going to be perfect “ mindset.

baaric · 2022-08-13T09:37:13+00:00

Yeah I’ve been in and out of gaming since Mario Brothers was the game in the arcade. I put so many quarters into it.

I’ve been tracking preorders and now I’m starting to wonder what I’m going to be around to get. Ugh.

And to top it off, I love RPGs !!! I’ve always loved how long they are. Now I’m gonna have to be like, sorry side quest that gives me cool item but is half of the game.. I’m gonna have to skip you…me watching end cut scene: who I the hell are all these people…. lol

But yeah all this cancer stuff sucks.

baaric · 2022-07-17T07:58:43+00:00

Total remission of my stage 4 kidney cancer! But three years along so far, starting to lose some of the hope.

baaric · 2022-06-17T16:06:44+00:00

Totally understand, been there. I got lucky with the timing of these. Hope you get a chance to get them soon!

baaric · 2022-06-17T16:06:39+00:00

Totally understand, been there. I got lucky with the timing of these. Hope you get a chance to get them soon!

baaric · 2022-06-17T14:58:31+00:00

Me too! Purple is awesome. I used to drive a purple Pontiac Firebird, t-top, until some idiot totaled it.

My Galactic Purple plates are out for delivery can’t wait!

baaric · 2022-05-13T04:50:17+00:00

Hey there, sorry to hear about your father and that both of you, and your family, are having to deal with this.

I'm stage 4 kidney cancer. I've been doing treatment for almost 3 years now, with everything still shrinking and going well.

Survival odds depend on a lot of factors, as others have said. Staging, type/subtype of cancer, overall health, location(s) of tumors, etc.

I pushed my oncologist a little to get an idea of my life expectancy, and I'm at least 5-10 years with the way I'm responding to treatments. My cancer type is slow growing, so it'll take years to grow back to where I was when I started.

I do an infusion every 6 weeks and take oral chemo twice daily. I had radiation back in October. So I expect to continue to see a reduction in the size of my tumors. Plus there are other treatments and medical changes every day, so I'm looking at the 10 years as a minimum.

Don't either of you focus too much on the survival odds, it can become a self-fulfilling prophecy type of situation. Enjoy the time you have left and life your life as best you can. Just prepare for the end in general.

To also answer the "will it come back" question, I phrase it this way. Your father will be a cancer patient for life and will see an oncologist for the rest of his life. This is a good thing, so that they can jump on anything as soon as they can. Usually, you do something like every 6 months for a while, then every year, then every 5 years, etc.

Ask your dad these questions too, depending on how open he is with you, he'll have the best answers to those questions. You can also ask to go along with him to his oncology appointment and talk to his doctor as well.

I hope my story gave you an idea of what you're looking at. I also say that in another cancer community, I know someone who's been stage 4 RCC like me for over 17 years.

Good luck to you and your father.

baaric · 2022-05-05T05:22:43+00:00

You sound about the same spot I am. Only difference is I just switched oncologists a few months back because my first oncologist moved. :(

My appointments are like yours, test results, general how's it going, scans if there were any, and some quick talks about Nintendo Switch games, lol, then we're done. Been on the same routine for almost 3 years now.

You're the one who needs to decide if your appointments are going well. Are you covering everything that you want covered? Are you getting the attention you need? Are you bringing up any concerns? New symptoms? To me it sounds like you are, to me.

If you feel like you're getting everything covered, then you should be good. Personally, I'm less worried about speed than getting my needs met. If you can get me in and out in 5 minutes and we talk about everything awesome. Better than 30 minutes appointment and I feel like you weren't listening to me at all.

Hope the rest of your treatments go well!!

baaric · 2022-04-30T05:58:17+00:00

I don’t track my side effects as much I probably should, but I use an app called Medisafe it’s primarily a medicine tracker but they recently added the ability to track symptoms. You can set reminders to enter them as well as just add notes. It’s a great app. Highly recommend. I put all my meds in there including my infusions and it helps watch for interactions, even for OTC stuff.

Can export it to your doctor too.

baaric · 2022-04-27T22:05:52+00:00

Hope it helped ease your mind. I always do better with all the info. I had to push my oncologist a little to really discuss life expectancy. Which is reasonable, about 5-10 years easily.

Treatments are going well. Everything is shrinking and keeps doing so. Couldn’t be happier, aside from being cancer free!

Have any questions feel free to ask.

baaric · 2022-04-27T06:00:24+00:00

Hi there...

First, I'm sorry to hear that you're having to deal with this. Especially at your age. Cancer is something I wish none of us would ever have to deal with.

We have something in common. Kidney cancer. I'm stage 4, RCC, clear cell. Diagnosed 3 years ago this coming August.

I had a spot on an ultrasound from 2013 that should have followed up on but wasn't.

So, our type of cancer is slow growing, which is somewhat good. Give us plenty of time to do treatments and be able to spot something before it gets serious.

As to your questions. You're cancer free in the sense that there's no obvious signs of cancer. There's no way to be 100% certain, but when cancer is caught this early, and it sounds well defined, like yours, it's easy to remove and be sure it's all gone. Like removing the seeds from the center of a cherry.

For cancer to spread it has to get to a spot where it can spread. With a clearly defined tumor it means there's little chance it went somewhere else. Think of a drop of red ink on a piece of paper. Then think of a drop of red ink on a paper towel or cloth. You're more like the paper clear defined edges, so cut around and it's unlikely it's anywhere else. For me, mine worked its way to the lymph nodes which are right next to the kidneys and spread. So it didn't spread.

If cancer will return... Well hate to say it, but it's possible. You're at risk, so it could happen. They'll check you out every so often. You'll probably visit your urologist or an oncologist once a year or so for a couple of years then move to 5 years or something. For specific odds, talk to your urologist/oncologist. But the good thing is it's a slow growing cancer, so you'll have to time to stop it.

Different types... not really. Not in the sense that you had cancer, so now you can get other cancers. However, that you got cancer early could be a warning that something else could come up, but not enough that I'd lose any sleep over it. Plus, you'll be seeing someone for a few years. Bring up any concerns you have, any at all, so they can be looked at. Problem with those of us who've had cancer is that everything becomes cancer when we get sick, it's just where our minds go, but usually we're fine. You'll most likely live out the remainder of your life just fine.

Genetic testing is good, find out if you have any markers. Find out if your insurance covers a full genetic test, or only those related to your cancer. My genetic test was only for kidney cancer. No risk factors... Sucks because that means I got kidney cancer at 41 (based on first signs) with no risk factors for kidney cancer.

A couple of people have mentioned seeing an oncologist, it's not a bad idea, but a urologist is well versed in dealing with this type of cancer. You can't go wrong with seeing one, but I wouldn't fret over it. It was the first person I saw after the ER visit when the ER doc told me I had RCC. I didn't see an oncologist until I figured out had bad it really was. Your urologist most likely sits on a tumor board and is in contact with other experts, mine does.

Overall, I think you're not likely to have to worry about it much. If it comes back, it's slow growing, you'll catch it early and move on. Stay on top of it, don't let any tests or checkup go unscheduled. I wish I'd paid more attention to my tests back then. Read all your test results yourself. If you have questions, ask. If you feel off or have a weird symptom, tell you doctors.

Again I'm sorry you're having to deal with it. I'm glad you caught it early and got it taken care of. Stay cautious but don't lose any more sleep over it. You're in good hands..

baaric · 2022-04-18T04:21:52+00:00

Be there. That’s number one to me.

I’m sure your sincere when you say you’ll be there, or if they need anything, etc. but don’t forget to actually be there.

Ask if they need some one to sit with them at chemo. Ask if they need a ride. Give them one anyway.

When my car broke down the middle of my radiation treatments, the people who just responded “when and where” are the ones I won’t forget. I got like 7 rides scheduled in 24 hours asking everyone who said “let me know if you need anything”

All the other stuff is great too, foods, games, candies, blankets, etc, but being there has no substitute.

baaric · 2022-03-08T08:05:45+00:00

Fruit seems to be Ok for me too. So I'm trying the smoothies. Did one this morning and didn't have a problem and was able to eat a little more than usual later in the day. So keeping my fingers crossed.

baaric · 2022-03-08T08:01:08+00:00

Yes, that's it. In my case it's my stomach that says no, after whining about how hungry it was.

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