Immunotherapy

[Natural Citizen]

This is something I started last month.

So I 've only had one session of the infusions

The first session went fine.

But today, during my second infusion session, I almost checked out.

It was a bad scene. Really bad. And fast and sudden.

The side effects of that stuff can be deadly and absolutely will be if you don't get attention to a negative reaction to it ASAP.

It's weird that I didn't have the reaction to the infusions the first time around, though.

It's rare enough that it actually happens, but one would logically think that if it were going to happen that it would have happened during the first session last month.

Only thing I can think of is, since they actually make the medicine right there tailored specifically for the Individual, that they may have messed it up some way.

It was crazy. No nurse call button or anything and I struggled for a good minute while I'm experiencing this trying to get someone 's attention as it got extremely worse and worse by the second.

 

[Eman623]

Sounds like your immune system may have "learned" to fight the immunotherapy from the first dose.

And this time it didn't much care about collateral damage.

 

[Natural Citizen]

Sounds like your immune system may have "learned" to fight the immunotherapy from the first dose.

And this time it didn't much care about collateral damage.

Could be that. Probably what it will end up being.

But..something to be mindful of if anyone ever has to have it.

They say it's extremely rare that it happens, but...keep in mind that it happens.

 

[sparky]

I would be holding some 'medical authorities' feet to the fire Natty.......~S~

 

[The Irish Ram]

Don't get any more...

 

[Natural Citizen]

I would be holding some 'medical authorities' feet to the fire Natty.......~S~

It's probably what Eman said in post #2 about the immune system learning to fight the immunotherapy from the first dose.

Before they even start you on immunotherapy they make you aware of this specific, yet very rare, reaction to the therapy.

And, of course, like most enything else like that, you acknowledge that you were made aware with your John Hancock.

But I am going to ask if anyone verified correct the mixture after the incident just because It'd be naive not to ask. That was actually the first thing I wondered about after it happened. Which, I suppose, is probably just human nature when one doesn' really possess any relevant medical expertise.

Don't get any more...

I dunno what they're gonna do now. My doctor will reach out to me with regard to alternative treatments, I suppose.

The ironic thing about it all is that I see the commercials for the specific immunotherapy drug an my idiot box all of the time and it always has that million miles an hour recital of the very long list of serious possible side effects, including death there at the end.

 

[SaxonJackson]

I'm no expert and I don't know much about immunotherapy. I suppose there is a time and a place for everything. I believe that the human body already contains what it needs to fight off viruses, diseases, infections, etc. if, that is, we feed the body the nutrients it requires. Most Americans (and humans, in general) don't feed their cells enough Magnesium, Potassium, Zinc, Vitamins D3/K2, Omega 3 Fatty Acids, Selenium, and a variety of micronutrients.

Conversely, most Americans are addicted to sugar, carbs, seed oils, monosodium glutamate, preservatives, food dyes, maltodextrin, genetically modified fruits and vegetables, hormones, antibiotics, and a plethora of fillers and additives.

I'm not saying that you fall into any particular category. I'm just saying that Americans, in general, are setting themselves up for diabetes, cancer, heart disease, and any number of maladies. Most of those maladies can be cured with a proper diet. The medical industry, in general, wants to keep all of us sick but alive. That's why it's a multi-trillion dollar industry.

Just my two cents and a little "food" for thought.

 

[SweetSue92]

It's probably what Eman said in post #2 about the immune system learning to fight the immunotherapy from the first dose.

Before they even start you on immunotherapy they make you aware of this specific, yet very rare, reaction to the therapy.

And, of course, like most enything else like that, you acknowledge that you were made aware with your John Hancock.

But I am going to ask if anyone verified correct the mixture after the incident just because It'd be naive not to ask. That was actually the first thing I wondered about after it happened. Which, I suppose, is probably just human nature when one doesn' really possess any relevant medical expertise.




I dunno what they're gonna do now. My doctor will reach out to me with regard to alternative treatments, I suppose.

The ironic thing about it all is that I see the commercials for the specific immunotherapy drug an my idiot box all of the time and it always has that million miles an hour recital of the very long list of serious possible side effects, including death there at the end.

Oh no. I'm so sorry to hear that. Scary. Was it an allergic reaction then? If you don't mind me asking.

I have been on infusions for Crohn's Disease since May. Not a single problem, thank God. Honestly changed by life. But the one I'm on is like a "starter" medication....you can easily switch off it to others if it's not working.

Hope you get this sorted....

 

[Care4all]

It's probably what Eman said in post #2 about the immune system learning to fight the immunotherapy from the first dose.

Before they even start you on immunotherapy they make you aware of this specific, yet very rare, reaction to the therapy.

And, of course, like most enything else like that, you acknowledge that you were made aware with your John Hancock.

But I am going to ask if anyone verified correct the mixture after the incident just because It'd be naive not to ask. That was actually the first thing I wondered about after it happened. Which, I suppose, is probably just human nature when one doesn' really possess any relevant medical expertise.




I dunno what they're gonna do now. My doctor will reach out to me with regard to alternative treatments, I suppose.

The ironic thing about it all is that I see the commercials for the specific immunotherapy drug an my idiot box all of the time and it always has that million miles an hour recital of the very long list of serious possible side effects, including death there at the end.

Oh my! Sigh.... What did they do to reverse the bad reaction? How did they finally notice you? Are you still in the hospital or home?

I'm sure this is quite the dismay....I'm sorry you had to go through that Nat Cit....and thankful you survived the reaction and are here to tell us about it!!!!!!

When do you speak with the Doc on alternative treatments? Don't give up, it's mind over matter!

You're in my heart and prayers...lots and lots of LOVE NatCit....coming your way!

Care

 

[Natural Citizen]

Oh no. I'm so sorry to hear that. Scary. Was it an allergic reaction then? If you don't mind me asking.

I have been on infusions for Crohn's Disease since May. Not a single problem, thank God. Honestly changed by life. But the one I'm on is like a "starter" medication....you can easily switch off it to others if it's not working.

Hope you get this sorted....

I don't exactly know yet whether it was an allergic reaction. As i'd mentioned, it didnlt happen during my first session a few weeks ago. Seems I would have had it then if it were trully an allergic reaction.

Immunotherapy can attack your other healthy organs as a reaction.

Mine's for stage 4 kidney cancer, so I don't know if they can just change drugs. Haven't talked to anyone yet. Thanks! And glad yours is working out well for you.

 

[Natural Citizen]

Oh my! Sigh.... What did they do to reverse the bad reaction? How did they finally notice you? Are you still in the hospital or home?

I'm sure this is quite the dismay....I'm sorry you had to go through that Nat Cit....and thankful you survived the reaction and are here to tell us about it!!!!!!

When do you speak with the Doc on alternative treatments? Don't give up, it's mind over matter!

You're in my heart and prayers...lots and lots of LOVE NatCit....coming your way!

Care

Apparently a whole team and a main doctor surrounded me and removed the immuno meds. Then they gave me a massive dose of some kind of steroids to counteract the immuno meds. I left and went home after about a half hour of monitoring. I donlt know what else they did because I was knocked.

As far as how they noticed, they didn't. I had to get up and go flag em down with the IV still hooked up while all of it was going on, and it was getting worse by the second. Took me about a minute or so to get up and try and then when I finally got someone's attention I basically just fell down in the recliner.

As I said, it was a bad scene.

When I come to, and saw the doctor in front of me with a flashlight in my face, the first thng I said was that you donlt have a nurse call button. lol.

But yeah. That's how that went down so far as I remember. It will be what i will be.

Thanks, C4all!

 

[Natural Citizen]

I guess the point is to just be aware if immunotherapy is something that anyone ever has to do.

Yeah, they say these instances are extremely rare. But it's only rare until it happens to you.

And it's such a new treatment therapy that it isn't really thoroughly understood why these reactions occur. And that's why, to the doctor's credit, the doctor couldn't answer/refrained from answering that question when my son asked her about it. All they can really do is speculate.

He was out in the waiting room and didn't even know about it until the elderly couple who were sitting across from me at the other station came out and were talking about it among themselves and he overheard and asked what they were talking about. Then I guess he came back and was talking to the doctor when I came to.

 

[braalian]

I would be holding some 'medical authorities' feet to the fire Natty.......~S~

Why?

It’s unfortunate that it happened, but he says himself he was warned it was a possibility before he started the therapy

 

[sparky]

But I am going to ask if anyone verified correct the mixture after the incident just because It'd be naive not to ask. That was actually the first thing I wondered about after it happened.

Perhaps then, not properly titrated Natty??

Why?

because it;s their job Braal

~S~

 

[braalian]

Perhaps then, not properly titrated Natty??

because it;s their job Braal

~S~

well, he said he's fine so the staff presumably responded appropriately to whatever reaction he had.

you're holding the staff responsible for the fact that he had a negative rection to an infusion?

 

[sparky]

you're holding the staff responsible for the fact that he had a negative rection to an infusion?

more that they did not immediately recognize it Braal ,,,,,,~S~

 

[braalian]

more that they did not immediately recognize it Braal ,,,,,,~S~

well, I wasn't there, but from the way he described it someone responded a little over 60 seconds after he started feeling the reaction. And clearly provided the appropriate treatment as he said he is fine.

Do you think they have enough staff to have one for each patient and does nothing but sit directly in front of one patient staring directly at them at all times?

I think you're being unreasonable here

 

[sparky]

I think you're being unreasonable here

monitoring vitals during any incident or procedure is SOP Braal

~S~

 

[braalian]

monitoring vitals during any incident or procedure is SOP Braal

~S~

I'm sure they were

but probably by a nurse or tech with a vitals cart on wheels at predetermined intervals

My limited experience in monitoring transfusions was that vitals are checked (going of hazy memory here) every five minutes for 30 min, then every 15min x 2, then every 30 min etc.

you seem to be having a hard time grasping that Natural Citizen's reaction most likely did not occur at the exact moment staff was checking his vitals.

He said (if I read his post correctly) that staff noticed and responded in about 60 seconds after his reaction started.

Its not like he collapsed or fainted or stopped breathing and it took 60 seconds for anyone to notice.

He had a reaction and staff responded promptly and appropriately and he is now fine

I'm just not seeing where this "sue them" reaction from you is coming from. Sue them for what? He's fine.

 

[sparky]

I'm just not seeing where this "sue them" reaction from you is coming from. Sue them for what? He's fine.

Apologies if my post was misinterpreted Braal......not my intent.

Let me pose it this way for you, it's the 'educated patient' that makes out best in our system

trust in i've decades of field time to back that up.......

~S~