I start chemotherapy monday and I don't have cancer

[WelfareBuysMyWeed 5391]

I'm feeling really down about this and just want to vent to some strangers. I've been in really poor health since going back before covid lockdown, unfortunately. I was diagnosed with an autoimmune disease in 2020, but unfortunately the medicine I need is prohibitively expensive even with insurance, and the payment assistance programs they offer are no help. I've been fighting to try and get my medicine down to an actual affordable level -- they told me even with insurance it'd be like $900 a dose, and I'd need like 6 doses in the first two weeks followed by a single dose every two weeks for the rest of my life. This has been going on since last october, everything is still being fought. However, in the meantime, the disease is started to affect my liver, so my doctor said I need to begin treatment for it immediately, and the old school low cost solution is chemotherapy. Apparently this is what they used to do with autoimmune diseases in the 70's?

Due to the nature of my illness, I'll be on chemo indefinitely, until the payment dispute over the medicine I need is resolved. Could take months, could take years, might never be resolved. Unfortunately despite not being cancer, chemo will still fuck me up according to my doctor. I'll lose all my hair and I should experience the nausea cancer patients experience.

All my life I've tried to avoid these kinds of problems, I've always been deathly afraid of needles and things of that sort. For example, I gave up sugar and sodas in my 20's because I thought I'd have to be stupid to willingly contract diabetes when it could be prevented, all so I could avoid injections. Don't smoke, don't drink, I'm basically a teetotaler. I've always been afraid of cancer and chemo, I've lost several friends to cancer and saw the chemo eat up their bodies and watched them wither away. I'm so worried this is going to happen to me now.

My doses are starting low, then after a month they're going to start increasing the dosage. I'm going to have to go in for blood work like every 3 weeks to check my vitals while on chemo for this stuff. I'm still a little in shock that my doctor is putting me on a chemotherapy treatment. This fucking sucks.

[HOOKEM4 5017]

Fuck man. Pulling for you. Hopefully someday we can actually have Healthcare in the richest country in the world. Rage.

[Zepol87 9171]

Damn dude I’m sorry. I wish for the best for you. PM me a Zelle cashapp or Venmo I can’t send a dose worth of money but a few dinners or lunches maybe. Sorry man 

[WelfareBuysMyWeed 5391]

4 minutes ago, Zepol87 said:

Damn dude I’m sorry. I wish for the best for you. PM me a Zelle cashapp or Venmo I can’t send a dose worth of money but a few dinners or lunches maybe. Sorry man 

I appreciate the offer but honestly that makes me feel worse, I don't want to beg for money. I know that's not what you meant, it's just how I've felt growing up. I have insurance, I own my own business, it shouldn't have to come to me feeling like a charity case, you know? It makes me feel like I'm a failure somehow, like somehow this is my fault if I'm resorting to taking strangers money. I just needed a place to say shit outloud, because I've been bottling it up since talking to my doctor last week.

It's been starting to hit me that I'm going to be a chemo patient. Like I guess I was shrugging it off before, like "it's not cancer so it's nothing to be concerned about" but as it's getting closer I'm getting more and more nervous and anxious. I had a friend who died of brutal brain cancer when I was 20 at UT. I remember going and seeing him with some friends in Houston, and we saw him immediately following one of his last chemotherapy sessions before he passed away. He was so incredibly weak and frail, nothing at all like I had remembered him before when he was well. I know it's not just the chemo that did that to him, but I can't get it out of my mind. It really has me wound up and nervous, like I can't calm down.

Edited September 21 by WelfareBuysMyWeed

[WelfareBuysMyWeed 5391]

Some dark humor in all of this: before my doctor told me that we needed to go on chemo, I was worried about the biologic shots I'd be taking. Like, stupid me, I was worried about the needle above all else, like "how on earth will I be able to give myself shots in the belly on my own?" Always been afraid of needles, even as an adult I have to look away when they give me shots. Like that was the worst thing I thought I could possibly deal with. Staring down chemotherapy, I feel so dumb for worrying about the shots now, like this is ten times worse in my head. I fucking wish I was just taking shots now instead. Funny how perspective changes like that quickly when you're sick.

[msbesq 385]

I suggest you finally start drinking heavily.

[WelfareBuysMyWeed 5391]

2 minutes ago, msbesq said:

I suggest you finally start drinking heavily.

im a recovering alcoholic, i havent drank in 20 years

Also, alcohol and chemo is a big no-no, especially when the concern is my liver

Edited September 21 by WelfareBuysMyWeed

[Dbeasy 14963]

Have you looked into whether you can get those shots overseas for far less money? Perhaps you could relocate offshore for a few years and run your business that way? Maybe doesn’t make sense but thought id throw that out there. 

[WelfareBuysMyWeed 5391]

20 minutes ago, Dbeasy said:

Have you looked into whether you can get those shots overseas for far less money? Perhaps you could relocate offshore for a few years and run your business that way? Maybe doesn’t make sense but thought id throw that out there. 

I dont think i could do that, at least not yet. I take care of my elderly parents in my free time, part of owning my own business means working from home which grants me a ton of flexibility. They live just 15 minutes away, both are in their 70s and are slowing down. I like to be around to help them if they need it, which they increasingly frequently do.

[Gil Bang 25897]

serious: have you checked the price at Mark Cuban Pharmacy?

[WelfareBuysMyWeed 5391]

2 minutes ago, Gil Bang said:

serious: have you checked the price at Mark Cuban Pharmacy?

yes, I asked my doctor about this because I had heard about it recently, and unfortunately it's not an option for me. They don't offer the precise biologic I need.

Edited September 22 by WelfareBuysMyWeed
hit post too soon

[High Plains Drifter 10970]

21 hours ago, WelfareBuysMyWeed said:

 Don't smoke,

 

avatar does not check out. 

 

Seriously, a little herb could help with the chemo side effects. 

 

[Orale 1087]

On 9/21/2024 at 5:12 PM, WelfareBuysMyWeed said:

I dont think i could do that, at least not yet. I take care of my elderly parents in my free time, part of owning my own business means working from home which grants me a ton of flexibility. They live just 15 minutes away, both are in their 70s and are slowing down. I like to be around to help them if they need it, which they increasingly frequently do.

The economics may not pencil, but it might be worth checking if you could get the biologic shot in Mexico and make the border drive or take a cheap Monterrey/CDMX flight to get it every two weeks (assuming you're in TX). Perhaps that would result in less downtime for the care you provide your folks than the after-effects of chemo. Just a thought. In any case, best of luck and I'm truly sorry you're having to deal with this. Fuck that disease. 

[Bevo&Pevo 5026]

So, the wife has a friend whose dad has some tumors on his colon.  He has tried it all, according to the friend.  After some research they decided to try this Lifewave X39 and here's the link.  Homepage - LifeWave (lw-content-staging.azurewebsites.net)        All Products (thisisitinfo.com)         According to the friend the spots have begun to shrink, so...  I'm not sure but do your research. ask some questions and if you want maybe I can break the ice for ya' and get an email address if you have questions.  Best of luck and hang in there.

[Bevo 13525]

On 9/21/2024 at 3:11 PM, WelfareBuysMyWeed said:

I'm feeling really down about this and just want to vent to some strangers. I've been in really poor health since going back before covid lockdown, unfortunately. I was diagnosed with an autoimmune disease in 2020, but unfortunately the medicine I need is prohibitively expensive even with insurance, and the payment assistance programs they offer are no help. I've been fighting to try and get my medicine down to an actual affordable level -- they told me even with insurance it'd be like $900 a dose, and I'd need like 6 doses in the first two weeks followed by a single dose every two weeks for the rest of my life. This has been going on since last october, everything is still being fought. However, in the meantime, the disease is started to affect my liver, so my doctor said I need to begin treatment for it immediately, and the old school low cost solution is chemotherapy. Apparently this is what they used to do with autoimmune diseases in the 70's?

Due to the nature of my illness, I'll be on chemo indefinitely, until the payment dispute over the medicine I need is resolved. Could take months, could take years, might never be resolved. Unfortunately despite not being cancer, chemo will still fuck me up according to my doctor. I'll lose all my hair and I should experience the nausea cancer patients experience.

All my life I've tried to avoid these kinds of problems, I've always been deathly afraid of needles and things of that sort. For example, I gave up sugar and sodas in my 20's because I thought I'd have to be stupid to willingly contract diabetes when it could be prevented, all so I could avoid injections. Don't smoke, don't drink, I'm basically a teetotaler. I've always been afraid of cancer and chemo, I've lost several friends to cancer and saw the chemo eat up their bodies and watched them wither away. I'm so worried this is going to happen to me now.

My doses are starting low, then after a month they're going to start increasing the dosage. I'm going to have to go in for blood work like every 3 weeks to check my vitals while on chemo for this stuff. I'm still a little in shock that my doctor is putting me on a chemotherapy treatment. This fucking sucks.

 

Are we talking about methotrexate? At what dose? As for the payment dispute, I might be able to help out if I know specifics.

 

Edited September 23 by Bevo

[Nice Guy Eddie 13410]

There’s a wealth of knowledge on this board. The more details that you feel comfortable sharing, someone might have advice how to get your medicine for less. Some doctors and even benefit managers don’t have knowledge about every possible avenue.

Assuming the costs cannot be lowered you are looking at a beginning $5400 in the first six weeks and then $1800 per month afterwards. Setting aside the upfront, is there anything you can do to increase your income by 2k/month take home? New job, overtime, etc.  or can you reduce expenses by $2k? Some combo of more income and lowered expenses?

The only thing that surpasses the importance of your health is the health of loved ones. Do what you can to get the right treatment  

 

[Bevo 13525]

2 hours ago, Nice Guy Eddie said:

There’s a wealth of knowledge on this board. The more details that you feel comfortable sharing, someone might have advice how to get your medicine for less. Some doctors and even benefit managers don’t have knowledge about every possible avenue.

Assuming the costs cannot be lowered you are looking at a beginning $5400 in the first six weeks and then $1800 per month afterwards. Setting aside the upfront, is there anything you can do to increase your income by 2k/month take home? New job, overtime, etc.  or can you reduce expenses by $2k? Some combo of more income and lowered expenses?

The only thing that surpasses the importance of your health is the health of loved ones. Do what you can to get the right treatment  

 

E

xactly. I have a close friend who helps docs get insurance to pay for Dupixent. And even though he isn't in Texas, he has given me advise and help on getting patients covered.

[irishtexan 11445]

Recently diagnosed type 2 diabetic and insulin injector chiming in. The needles used to inject insulin are tiny because you inject subcutaneously rather than intravenously. Probably about 1/4 of an inch long and like a millimeter in width. I barely feel anything when injecting each morning. 

I'm not saying your fear of needles is irrational; only that not all medicinal needle injections are the same. 

[Shoxthemonkey 1976]

I haven't read the thread in a bit but there is an autoimmune thread in this forum.

There might be some helpful info in there. Good luck.

[Basil 742]

Well, you're probably not going to like this one bit but chemo should get you past needle-phobia.  It did me.  After they stick you a few dozen times you brain stops freaking out.

[tx 3 putt 76315]

On 9/21/2024 at 3:11 PM, WelfareBuysMyWeed said:

I'm feeling really down about this and just want to vent to some strangers. I've been in really poor health since going back before covid lockdown, unfortunately. I was diagnosed with an autoimmune disease in 2020, but unfortunately the medicine I need is prohibitively expensive even with insurance, and the payment assistance programs they offer are no help. I've been fighting to try and get my medicine down to an actual affordable level -- they told me even with insurance it'd be like $900 a dose, and I'd need like 6 doses in the first two weeks followed by a single dose every two weeks for the rest of my life. This has been going on since last october, everything is still being fought. However, in the meantime, the disease is started to affect my liver, so my doctor said I need to begin treatment for it immediately, and the old school low cost solution is chemotherapy. Apparently this is what they used to do with autoimmune diseases in the 70's?

Due to the nature of my illness, I'll be on chemo indefinitely, until the payment dispute over the medicine I need is resolved. Could take months, could take years, might never be resolved. Unfortunately despite not being cancer, chemo will still fuck me up according to my doctor. I'll lose all my hair and I should experience the nausea cancer patients experience.

All my life I've tried to avoid these kinds of problems, I've always been deathly afraid of needles and things of that sort. For example, I gave up sugar and sodas in my 20's because I thought I'd have to be stupid to willingly contract diabetes when it could be prevented, all so I could avoid injections. Don't smoke, don't drink, I'm basically a teetotaler. I've always been afraid of cancer and chemo, I've lost several friends to cancer and saw the chemo eat up their bodies and watched them wither away. I'm so worried this is going to happen to me now.

My doses are starting low, then after a month they're going to start increasing the dosage. I'm going to have to go in for blood work like every 3 weeks to check my vitals while on chemo for this stuff. I'm still a little in shock that my doctor is putting me on a chemotherapy treatment. This fucking sucks.

 

goto reddit and see how other people have handled this …

[Irish Wrist Watch 1349]

Both Jordan Peterson and his daughter had some form of auto-immune problem which caused some severe problems and IIRC his daughter lost a wrist or an ankle from it. Try to find some of his early talks (a few years ago), because he gets into some detail. IIRC, again, his daughter changed her college routine/diet and discovered that wheat or gluten "allergy" or something like that seemed to be fucking her (and him) up big time and could have had genetic roots. (Allergies, or your body's reaction to chemicals, pollutants, etc., can manifest themselves in a lot more ways than a cough or skin rash, and you can be allergic to more than dust or pollen. You may not even realize what is causing your problems.) There's still alot we don't know. /In any case, their turnaround was remarkable. He lost a ton of weight and returned to excellent health. And apparently she's fine as well

Changing your diet is a great start. Read up on clearing your body of potential antigens. The theory is that you start a liquid or modified liquid diet, and for a day or two only eat/drink shit almost nobody is allergic to such. Usually restricted juices (pineapple) or just water. A fast, actually. After a day or so the hunger pangs disappear. You get weak fast, but you feel alert. Then when your system is clear, you add one food at a time - say potato. Next day pasta. etc. If you suddenly feel tired, you've hit something your system has a bad reaction to, because food shouldn't make you tired, or so the theory goes.

Good luck!

Edited October 6 by Irish Wrist Watch

[WelfareBuysMyWeed 5391]

On 10/6/2024 at 3:39 PM, Irish Wrist Watch said:

Both Jordan Peterson and his daughter had some form of auto-immune problem which caused some severe problems and IIRC his daughter lost a wrist or an ankle from it. Try to find some of his early talks (a few years ago), because he gets into some detail. IIRC, again, his daughter changed her college routine/diet and discovered that wheat or gluten "allergy" or something like that seemed to be fucking her (and him) up big time and could have had genetic roots. (Allergies, or your body's reaction to chemicals, pollutants, etc., can manifest themselves in a lot more ways than a cough or skin rash, and you can be allergic to more than dust or pollen. You may not even realize what is causing your problems.) There's still alot we don't know. /In any case, their turnaround was remarkable. He lost a ton of weight and returned to excellent health. And apparently she's fine as well

Changing your diet is a great start. Read up on clearing your body of potential antigens. The theory is that you start a liquid or modified liquid diet, and for a day or two only eat/drink shit almost nobody is allergic to such. Usually restricted juices (pineapple) or just water. A fast, actually. After a day or so the hunger pangs disappear. You get weak fast, but you feel alert. Then when your system is clear, you add one food at a time - say potato. Next day pasta. etc. If you suddenly feel tired, you've hit something your system has a bad reaction to, because food shouldn't make you tired, or so the theory goes.

Good luck!

Firstly, I'm sorry if this post comes off as harsh, I'm in a cranky mood because I'm feeling awful right now from this mornings chemo session, but your post provided a spring board to vent about something that's been bothering me. And to clarify, my next tangent isn't strictly related to your post entirely, since it came in a topic I started directly talking about this subject, it's that I didn't ask for medical advice in the OP but received it that made me think about this:

My sickness creates large, bloody sores on my body that are visible, and good god the number of strangers who will come up to me in public and offer unsolicited medical advice is one of the most annoying things about all of this. Again, not singling you out because it was done in a topic where I was specifically talking about my illness, but when it's done in public it just reinforces to me that my sickness is visible and that I look terrible and it's noticeable. I'm already really self conscious -- doubly so now that my hair has started noticeably falling out -- so those kinds of comments just tell me inside that yup I look pathetic. But even more so, what is frustrating is that I live this 24/7, and I have multiple doctors that I talk to about this. There is simply no way that a stranger who isn't a medical professional is as informed about what I'm going through without experiencing it themselves. Because for every glancing video they look at on youtube that catches their eye, I've sat and read countless more articles and such on the subject. It's not something that is interesting to me, it's something i'm dealing with and thus have a vested interest in that fuels my research. The vast, vast majority of the "advice" people give me are the most basic things you could hear about such sicknesses -- because that's exactly what they are, surface, easy to find information that has bubbled up to the top of public discourse. Like, "change your diet" is the absolute very first bit of advice I heard from my doctors *4 years ago,* if I'm already resorting to chemotherapy I promise you someone has already told me that perhaps things in my gut can be affecting my body.

Again, just using your post as a jumping board because this happened to me sunday while I was grabbing dinner and it put me in a sour mood. I hate how often I'm reminded in public now that I'm sick and can't blend in. I hate the countless times I have to fake a smile while some stranger tells me "advice" that I'd already heard years ago. I hate that if I cut them off and tell them I'm not interested or that I've heard it before, they snap at me like *I'm* the asshole. That's actually how the situation resolved sunday, I had to tell the dude at pizza hut that I didn't want to hear his homeopathic bullshit spiel while my food was getting cold because I straight up didn't ask, and the guy started cussing me out for not wanting his "help." And that's actually happened multiple times. Really, really frustrating.

[WelfareBuysMyWeed 5391]

I *FINALLY* got everything sorted out. My medicine comes next Thursday. I am legitimately in tears over this, I am so fucking happy right now. I can't believe it.

[WelfareBuysMyWeed 5391]

BEAT GEORGIA!!