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The Something Awful Forums > Archives > Comedy Goldmine > The Goodmine > Rest in peace, wren...
Name Change
Oct 9, 2005


 Thought I would come in here and link to my personal Hodgkin's Lymphoma thread in Ask/Tell, which I made before I realized this megathread existed. Hang in there, everyone.

http://forums.somethingawful.com/showthread.php?threadid=3517529&pagenumber=1&perpage=40#post409606894

* # ¿ Nov 15, 2012 19:08
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# ¿ Apr 26, 2024 01:42
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Name Change
Oct 9, 2005

Nannypea posted:

gently caress gently caress gently caress CANCER!!!!!

I went with my husband to his appointment at Duke yesterday. Basically everything we knew about is situation was wrong. I'll try to make this as short as possible.

He has prostate cancer; radical prostate surgery (complete removal) on Oct 14, 2004; all margins clear, not in lymph nodes.

He went to his urologist for a while, then started getting PSA test done at his PCP. Last year his PSA rose to 0.33, his PCP told him to "let's just see what happens." He's now at 1.68

Per the wonderful Dr at Duke, we have a case for medical malpractice. He actually walked in and said that. That's pretty strong language. When his PSA reached .20 it is considered to be a recurrence. Radiation should be done at this point and before it reaches .50, over .50 it’s not really effective at all.

We chatted for a while, he ordered a bone scan, another PSA test, and another test I’ve never heard of. After the testing has been completed we’ll see the oncologist. He then asked if he’d had a internal test recently and he hadn’t. When he did it, there was a mass where his prostate was.

This is a very good thing! Hopefully, it’s just there and can be treated. Now this is where it’s get really screwy. I said that it was odd because we had been told that all margins clear, not in lymph nodes. He gave that look – the are you crazy look and showed me the FIRST report showing he did NOT have clear margins!

This is beyond appalling, I'm terribly sorry. Both I (Hodgkin's Lymphoma) and more so my mother (breast cancer) had problems with doctors who were simply not diligent early on, but nothing like this. Effectively, if my mother had listened to her first doctor, who didn't act on any of her health complaints (which turned out to be cancer symptoms), she eventually would have died.

* # ¿ Jan 5, 2013 20:44
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Name Change
Oct 9, 2005

Grayly Squirrel posted:





On an unreleated note, I need everyone's help. My onc wants me to decided whether or not to get a "portacath" for my chemo, or just use periphial viens in my arm. He said I have "good veins" so I should tolerate it well, and its up to me. I just have no idea. No one I know has ever been through something like this, I don't have anyone to ask. Are there pros and cons beyond the simple medical benefits I should be aware of?

Get a port. No two ways about it. Your "good veins" will be ruined by even relatively mild chemotherapy. I had to have an IV put in for a PET scan the other day, and it took them four tries to get a vein because chemo scarred them all up two years ago. I am a person who tolerates needles really well, too, and at best it's just an irritation that makes things take longer.

* # ¿ Jan 6, 2013 21:26
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Oct 9, 2005

Chickalicious posted:

Granny has small cell lung cancer. Because I'm an idiot, I googled it and the internet does not seem as optimistic about her chances as her doctor and of course I'm fixating on that.

Remove the Internet from your mind on this issue and consult doctors if you don't understand something. The Internet will drive you crazy, because every cancer patient is different, and useful information on various cancers and treatments rarely exists within the confines of a simple Google search. Doctors know more about this stuff by far and have better information than whatever finds its way into the public domain. If you are confused by the doctors, ask them to clarify until you are not. And, the more you know, the better you can help the actual cancer patient.

quote:

Any advice on how to handle bringing my son around after she starts seeing the immune compromising effects of chemo? He's two and of course toddlers are gross little Petri dishes of sickness. He doesn't attend childcare of any sort right now, but will be starting preschool in the fall. He's generally a healthy kid (I can count his illnesses in the last 27 months on less than 2 hands), but occasionaly has a cold like anyone else. Should I keep him away for a couple weeks after she's had chemo? Obviously if he's showing signs of sickness, we'll definitely keep them apart, but if he's not obviously sick, are there any extra precautions we should take?

It's not really whether or not he's sick, the issue is that she has no immune system. Even if he were the most cleanly two-year old ever, he could give her infections that he himself is immune to. As far as precautions, there are many and you should consult a doctor on what they recommend. I'm going to have likely even more immunosuppression than your grandmother, so the guidelines I have to follow may be significantly different, but in general:

-Always wash your hands, in the fifteen-second long way that doctors do before they go in for surgery (thoroughly). This is the biggest thing.

-Avoid exposing her to animals or live houseplants. Don't let her garden. Someone else needs to feed the cat and take out the litterbox.

-Avoid exposing her to people who have been recently vaccinated.

-Have her brush and floss twice a day to reduce infection risk from ordinarily harmless bacteria in her mouth.

Basically, I wouldn't trust a two-year old to visit grandma when her white blood counts are low.

* # ¿ Jan 14, 2013 10:57
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Oct 9, 2005

Grayly Squirrel posted:

Figured I'd post an update. It makes me feel better to write this down.

Chemo day three:

So apparently I'm really really allergic to etoposide, one of the main components of my BEP regime. It causes hives and swelling in fantastic fashion. Onc suspects its related to my psoriasis. The hives start at my psoriasis hot spots, and then spread. He said, with auto-immune issues, its anyone's guess. We found a solution that worked yesterday. If we spread the etoposide over four hours instead of two, with constant re-dosing of bennadryl and steroids, all I get is all over rash and itching. No hives, no dangerous swelling. It sucks, but I can live with it.

I've also found out that I suck at chess right now. I My roommate comes with me to my treatments. I usually beat him at chess. He's been wiping the floor with me.

Since being re-diagnosed I have become terrible at Words with Friends. There have been several occasions where they have had to slow down my injection rates for chemo, since dumping into my body at normal speed causes uncomfortable side effects.

* # ¿ Jan 16, 2013 18:20
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The Something Awful Forums > Archives > Comedy Goldmine > The Goodmine > Rest in peace, wren...