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Those fears about starting treatment and side effects


KatieB

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Remember when you (or your loved one) first started treatments?

What were some of those fears?

How did you get thru those fears?

Looking back, what was a big misconception and what did you wish someone had told you before starting treatment?

ANy advice you'd give someone who was just about to embark on treatment?

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A lot of people remember chemotherapy and radiation from way back in the day- and it's scary thinking you may not survive the treatments themselves--

BUT A LOT of people do very well with their treatments and there are a large number of medications now that combat side effects.

I remember being so scared those first 8 hours of the first chemo session.....thinking a reaction would be immediate- vomiting, burning, etc...

My dad did great...the worst part of it was the waiting, the logistics, getting signed in, getting hooked up, and waiting for the chemo to drip into his system....

What we should have been scared of was 3 days later when the nausea started.

If I did it all over again I would have asked more questions about side effects and made sure he took his anti-nausea meds BEFORE he got sick to stay on top of those symptoms!

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Katie, I was terrified of treatments. But keep in mnd that all of my family died from cancer and treatments, so my first reaction was to not have follow up treatment.

Now that I had it, I'm so glad. I don't think I'd be alive today if I didn't have the follow up chemo therapy treatment.

Judy in MI

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We had every fear possible. I can laugh now at one.....I had visions of chemo making my mom so frail & weak.....I actually called an ambulance company to see if I could hire them on call to take my mom to her hospital of choice instead of a local one. Ha!

Turned out for my mom at least, chemo was NOT as bad as expected!

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Andrea-

Your ambulance story was hilarious, but hit very close to home with me. The local hospital near where my dad lives (he has NSCLC) is complete garbage. The one his doctors belong to, and the one he prefers, is about 15 miles away. About a month ago he was having chest pains and trouble breathing, so he called me at work to ask if I could come home and take him to his fave hospita. Okay, I work a few miles from the hospital, and I'd have to drive back home (20 miles) and then drive back to the hospital (15 miles). I asked him later, "Why didn't you just call an ambulance? What if I didn't get there in time?" He said, "Because they would've taken me to the other one, which is only about 2 miles away, and I hate it!" :lol:

Is it actually possible to get a private ambulance, or to have an ambulance take you to another hospital? Maybe one can go to the ER, and then asked to be transferred?

This is asked in all seriousness... :D

-Cathy

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Cathy,

If the preferred hospital is not too far away, they may take him to the one he requests. However, they may make him sign a waiver that they are not responsible if something happens to him while enroute to the further away hospital.

I'd call your local ambulance service and ask them this question, but pretty sure that is what they'd say.

Obviously if he were unconscious, they will take him where they think is best.

Good question.

MI Judy

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Thanks, Judy! I think I just may look into that. And maybe I can make him sign a note, laminate it, and hang it from his Life Alert necklace. (I laughed when I first wrote that, but it really doesn't sound like a bad idea...) I will discuss it with him this weekend.

Cathy

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I was practically petrified about the surgery--and it turns out it was pretty rough. I woke up in a lot of pain and it took some adjusting with the pain control people for a couple of days before it was managed correctly.

I did recover pretty quickly--was cleared for work after about two weeks, but I was not back to acceptable energy levels for about 6-8 months.

Chemo was not easy, but it wasn't horrible either--I worked thru the whole time, which was my choice. I just wanted to live a normal life and not be thought of as a 'cancer patient.'

I think my doctors did a great job of informing me about what to expect, but they never said surgery would not be serious, and could have some terrible consequences, which I guess was the terrifying thing.

Prior to all of my treatment, I had found the LCSC message board, and after reading about everyone else and their stories, I was pretty well prepared for surgery, and knowing that other people survived was a big help to me.

I would certainly go thru this all again to have the same outcome, but it's scary business, no two ways about it!

Cindy

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It's interesting how different the experience can be for everyone. My surgeon warned me that the surgery was very rough - and while certainly not a piece of cake, I didn't find it to be as bad as he'd made it out to be. But the second time when I had chemo and radiation - I just remembered everyone telling me how tired you were during chemo - so I figured OK, I'll sleep a lot. No one warned me that being tired was an understatement and that did not always mean you could sleep. That was the hardest part for me. I would not have been able to work through chemo. But the nausea wasn't as bad as I'd expected.

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At my fitness level, I expected to tolerate the treatments well, and recover well. And I did very well after surgery. I was back on the bike 16 days after surgery, and used lots of easy pace riding to regain my strength.

Chemo, on the other hand, was tougher for me than I expected. 15 minutes of Taxotere was about to send me into cardiac arrest, and I got to spend the rest of the day in an emergency room.

I then managed three rounds of cisplatin and gemcitabine, but had severe pain in my toes, and a number of days where I was pretty much a zombie.

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My first couple of triplets seemed so much easier than I expected. But then it began to get worse as the treatments progressed. The worst for me was being hit from time to time with intense splitting headaches. I reported it once and had an unscheduled MRI. It was such a nightmare. My husband had to go get me stuff to drink and then they had to interrupt my treatment. He took me to a nearby dx center and there they demanded thousands of dollars up front. It was such a bad experience that I didn't "report" the headaches again. I finally went to my PCP who announced I had a bp at near stroke-out level. Seems I was one of the few people for whom Avastin causes raging high bps. I have handled all other treatments reasonably well but still have an intense fear of needing to have radiation.

Each treatment for me has required an adjustment or way to approach the new side effects like functioning on huge amounts of bp meds (Avastin), extreme constipation (Alimta), and rash and diarrhea (Tarceva). I agree the early triplets included nausea setting in about the 4th day and if I had it to do over, I would insist on a script for Zofran instead of Phenergen which I think is next to useless except to help you sleep thru the insomnia brought on by the dex that is given with most if not all IV chemo treatments.

Now this all sounds awful when you write if down but I didn't live it as all that awful. Still, changing treatments is something I dread. First it means progression and the failure of another treatment to stop the cancer. And then the dealing with new side effects requires a new focus on "I've got cancer" that can fade as you get into the groove of a new treatment. Enough said.

Judy in KW

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God blessed me with total ignorance! Surgery was a breeze, it sunk in later how "major" the surgery was. Wasn't afraid of chemo, didn't care about the side effects, just wanted to be alive. Hind sight being what it is, I wish I had asked a lot more questions about side effects, maybe I could have done something to help with my hearing. But the cancer didn't kill me and neither did my doctors!

Dana

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