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What is chemotherapy like?

Right now I'm being kept alive with lots of Prednisone, furosemide and lovenox but it's not enough because my lung rejection is steroid-resistant. Soon I'm going to start a round of methotrexate to try putting my disease in remission. Has anyone here been on this chemo before? What was it like? How bad are the side effects? Is my hair going to fall out? Any advice appreciated, thanks

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dancingtongue · 80-89, M

Your health care providers should have told you as part of your informed consent. Although, truthfully, I cannot tell you precisely which chemicals were used in either cycles of chemotherapy my wife went through -- first, prophylactically following a mastectomy for breast cancer, and second for lung cancer -- but the side effects were very similar. Lost her hair both times; lethargy and weakness for a spell following each treatment. Not pleasant. Successful the first time, as she remained free of the breast cancer for a couple of decades. Not so successful the second time for the unrelated lung cancer to the point that she opted out after three cycles to go into hospice care.

When I was offered prophylactic chemotherapy following my colon surgery, I recalled her experiences and declined. The chemo would have given me a 23% chance of adding 2 years to my life expectancy. Having been through that with my wife, I knew that nearly half of that additional 2 years would have little quality, and at my age, it did not seem worth it. At your age, definitely worth it, imho. But not a nice experience. If they haven't advised you of the side effects, demand that they do. It is your right, and their information should be more accurate than anything you will get on social media. And I wish you well in your treatment.

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sree251 · 41-45, M

@dancingtongue You have recovered better without chemotherapy which you rejected. Her lung situation is a lot more complicated and cannot be dealt with by cutting it out.

She is right. It just isn't fair. You are a positive thinker. What would you do in her situation?

angoranimi · 22-25, F

@sree251 he was just sharing his experience which is different from mine. In my case, chemotherapy is obviously the right choice and I'm hopefully going to be starting soon. I do also practice alternative health treatments in addition to my standard medical treatments, they complement each other very well, doing both can lead to much better outcomes

sree251 · 41-45, M

@angoranimi You said: "I do also practice alternative health treatments in addition to my standard medical treatments, they complement each other very well, doing both can lead to much better outcomes"

I am proud of you, my friend. You have courage, and determined to succeed. You remind me of my mom. She just won't allow me to give up on anything. She is into homeopathy and prefers it to modern medicine.

Your body is acting up but you despite the pain you have to endure, you won't let it give in to the disease. So, I guess you have to stay positive and hang in there. You are not your body. Don't let your bodily pain transform into mental despair. Watch your physical pain. Don't fight it. You are not sick. You are not in pain. It's only your body that is ailing.

We will stay with you in this battle.

WillaKissing · 56-60

I have no idea sweetheart.
But I did just now stop and said a personal prayer for you.

sree251 · 41-45, M

@WillaKissing Thank you for your kindness.

angoranimi · 22-25, F

@WillaKissing thank you!

WillaKissing · 56-60

@angoranimi Absolutely you are welcomed and prayed for, again today.

SooperSarah

I went through abvd chemo but I don't think that cocktail included any of yours. In my experience the side effects vary greatly by person. They gave me a 50 page book of side effects and said my hair would fall out. I ended up with a side effect that wasn't even in the book and only started noticing some hair loss at the end.

angoranimi · 22-25, F

@SooperSarah no it doesn't, none of the meds I'm on already are chemo so far, I haven't started yet. And yeah that sounds about right with medicine, so unpredictable

Flenflyys · 31-35, F

Wow so are you carrying fluid in your lungs then? Why are you anticoagulated?

I know that chemotherapy treatment often isn’t pleasant, but if you’re in fluid overload and can’t even breathe I can’t imagine that’s very comfortable either.

Elisbch · M

I do not know anything about these kinds of drugs or side effects
I just hope whatever you have to go through, you get better and well again. 🙏🏻🤗

angoranimi · 22-25, F

@Elisbch thank you!

sree251 · 41-45, M

What disease are you suffering from?

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sree251 · 41-45, M

@angoranimi Keep us informed. Let us share what you are going thru now. Being together in tough times is necessary.

angoranimi · 22-25, F

@sree251 my whole body is always pouring sweat, I always feel like I'm suffocating, and get burning and stabbing pains in my lungs. My oxygen level drops really low and my nails look blue and my skin is really pale. A lot of times I start to faint from trying to move around and can't do much physically. When I breathe it sounds diseased. I am already on strong immune suppressant therapy called Prednisone, I'm on a really high dose of it, but sometimes organ rejection is steroid-resistant and then patients have to try things like chemo. I'm only 25 and I have a husband, a one year old baby, and a scientist career lined up to start if I get better so I am going to definitely start chemo soon even though it will be rough because I want to try surviving and I know I have no chance without doing chemo. When my disease was untreated and I wasn't on Prednisone yet, the symptoms were absolutely horrific to the point where I wanted to commit suicide and hoped to die in my sleep every night just to escape how miserable every second of existing had been for the past year and knowing there was no escape from it. The Prednisone is helping the symptoms and giving back a little bit of my life. But only a little, I'm still not okay and I want my life back. My situation isn't fair, my case is a unique thing that doesn't happen to other people after they get pulmonary embolisms, I might actually be the first one and I hate that so much. I would rather be the first for something good, not something horrible like this. I'm so mad I'm going to fight it until the very end. And I'll keep you guys on here updated

sree251 · 41-45, M

@angoranimi You said: "my whole body is always pouring sweat, I always feel like I'm suffocating, and get burning and stabbing pains in my lungs."

Wow, you are going thru a lot, my friend. Thanks for sharing. I want to read thru your post carefully, before I come back with a response.

Colonelmustardseed · 36-40

Did your doctors and nurses explain what to expect? I hope you recover well. 😔🧡

angoranimi · 22-25, F

@Colonelmustardseed nope and thank you!

Colonelmustardseed · 36-40

@angoranimi Wow. They should have. Mine gave me a booklet of info on what they gave me, explaining what to expect. Unfortunately, I don’t think it was methotrexate. So I can’t give insight to what might happen.
I really hope you get well as soon as possible. 😔

TexChik · F

All chemo has side effects , andvtgr treat those as needed

Patriot96 · 56-60, C

Did they mention depression

angoranimi · 22-25, F

@Patriot96 no but I'm sure that will get worse

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