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So today we confirmed with the doctor that I would have to go on a 3 week schedule now. I had chemo today, and I'll take two weeks off before I come back.
Right now they say my red cells are doing all right, if they continue this way I won't need to start taking the Aranesp red-cell booster shots at home which is a good thing. Unfortunately, my white count was low, so they may be adding a shot of Leupigen (sp?) which everyone who has had it tells me is a very painful shot. Not when it goes in, but later - it stimulates the bone marrow and causes bone and joint pain.
Good news is that my doctor was finally back - she had been out for three weeks due to surgery. I told her about my university flunking me on my classes because I hadn't "proven" that I was unable to attend classes last term. She got livid. A doctor on a rampage is a sight to see. She wrote a very succinct, pointed letter telling the academic appeals office in no uncertain terms that I was too physically ill to attend classes and I should be granted an emergency medical withdrawal from my classes. She told me that it would be faxed to the appeals office before I left that day, and it was. I also have the original which I'll mail in after making a copy for my files.
She got both her undergraduate and medical degree from UAB, and she told me "They are giving you trouble because they don't want to refund your tuition. But I'm not going to let them treat one of MY patients like that. If they give you any more trouble, I'll call them personally and I still know people there, I can make phone calls up the chain if need be."
I feel confident my appeal will be upheld, and the F's will be changed to W's on my transcript. She didn't seem like she was going to accept anything less. It was if what they did to me was a personal insult to her or something, it was almost funny how angry she was at them. But I'm glad she's on my side. Posts: 14428 | Registered: Aug 2001
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Whew! I'm glad that you'll be able to check that part off your brain. One less thing to worry about is always a good thing.
I was just thinking about you and hoping all is going well. You sound like you're hanging in there today and I'm glad.
Posts: 697 | Registered: Nov 2005
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No white cell shot. She wants to see how I do on the 3 week schedule. Plus, she said my white count may have been rather wonky due to the strep infection anyway, so this might not be a true indicator.
Only bad thing about this session was I had some bleeding at the needle site, no one knows why. Probably just the needle getting bumped around. they were able to clean it up, flush the port and make sure the port was functioning normally, and it was, so the bleeding was no cause for concern.
My nurse found a stitch by my collar bone where my surgeon had put in the scope for my 2nd port operation. The stitch never got removed because I never made a follow up appt. with the surgeon. She told me to see if Wes could take it out for me at home, and if he couldn't she would do it. So last night Wes took it out for me, even though it had been in over a month, he was able to remove it without any pain. I went back today and the nurse checked to make sure it was all out and asked me if it hurt, I said no. She said "Whew. That's the reason I suggested your husband do it, I didn't want to hurt you. I feel like I never do anything but jab you guys with needles and cause pain!"
No word yet from UAB. I'm hoping to hear something next week.
Posts: 14428 | Registered: Aug 2001
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That's good news, hon. I'm glad the doctor is going to bat for you with the school. I was ... I mean, my jaw was hanging open that cancer with all the chemo and stuff wasn't enough to prevent you from attending classes. So ridiculous.
Posts: 9293 | Registered: Aug 2000
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So everything is straightened out with school. Today was my 7th treatment, so I'm past the halfway mark.
They came out with a new protocol for administering oxaliplatin, they infuse it in 500 ml of D50 instead of 250. Same amount of medicine, just diffused through a larger amount of liquid. They said it was supposed to help with the cold sensitivity. I think they were right, because I could drink cold drinks out of the fridge. If that is the case, if the new way of administering does take that side effect away, I'll be so grateful because I'm sick of drinking things at room temperature.
Tomorrow I see my doctor again, I don't know that I'll have much to talk to her about, except the neuropathy that continues to steadily grow worse, and I'm also starting to have some skin peel off my hands and feet. That's a side effect of the chemo, and if it gets too bad we may have to stop treatment early. Apparently in some people the neuropathy become permanent, so they don't want it to get to the point where it's crippling you on the chance it won't go away after treatment is stopped. The nurse told me most people stopped this chemo early for either neuropathy, or the hand/foot problem with the pain and peeling skin. She said in fact, few people make it to the 12th treatment because of that. So we'll have to see what the doctor says. Right now the neuropathy and peeling is under control, I can deal with it.
Posts: 14428 | Registered: Aug 2001
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I went to get treatment today and got sent home. I have sores in my mouth. The moment I told the nurse about it she said she'd page the doctor but more than likely she'd send me home.
By the time the doctor returned the page they had my counts as well, and my white counts were low. So I get another week off without treatment and have two prescription mouth rinses called in to help the sores heal. I didn't know mouth sores were such a big deal. The nurse said if they don't get better I may need to be treated with either antibiotics or anti-virals depending on what type of sores they are.
I cried on the way home. I thought this schedule was going to work out well, it meant that Wes would always be off on the Tuesdays when I had chemo (Tuesday is the day I have two dance classes and gymnastics, which requires me to be gone from home running around from 2:30 to 7:45 - not a good thing on treatment days), and I'd be in a good week when we went to Washington DC but now this messes it up terribly. In fact, if I stay on the current schedule and there are no more delays, Wes will work EVERY Tuesday that I have treatment.
And, if there are many more delays it will affect me returning to school in the fall - school starts in August. I'm already well into July before finishing treatment now, it won't take many more delays to push me into the time when school is supposed to start.
So yeah, I'm upset. I know it's common, and there will always be setbacks, but we were doing so well with the three week schedule, that I was hoping it would keep going that way.
Posts: 14428 | Registered: Aug 2001
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Yeah, they are like your normal type sores inside the mouth, what I would have commonly called mouth ulcers.
They hurt, especially when you eat anything salty or brush your teeth. Apparently there is a risk of the sores spreading and affecting my throat as well, because one of the prescriptions she called in I'm supposed to swallow, so it can coat my throat as well. The other one is a typical swish and spit out type mouthwash.
The only mouthwash I have at home currently is Listerine, but she told me not to use it because of the alcohol content.
On a good note, I registered for summer classes. I'm going to take two American literature courses online, so I don't have to worry about their being any classes on chemo days. And, one of the instructors is the same one I had when I took British lit online last summer, and she likes me. This will finish all my lower level lit courses, and there's one more pre-req I have to take (a research methods class) before I can take the higher level lit courses for the English major. I plan on taking that one in the fall.
Posts: 14428 | Registered: Aug 2001
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(((Belle))) I'm sorry your plans got messed up. Perhaps things will still somehow end up righting themselves to a way that works out better. And I hope your sores heal soon! Ouchies!
Posts: 952 | Registered: Jun 2005
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Oh, Belle. I am so sorry. Setbacks are particularly nasty because you never really expect them and the longer you go without one, the harder it is to deal. I'm going to keep on praying and sending my love.
Posts: 3037 | Registered: Jan 2002
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Yeah, the alcohol can definitely dry out your mouth. I keep an extra mouthwash because of that, a peroxide one. It's tasty, actually. But if they're just regular mouth sores, they should heal up really quickly. And it's great that you can take online classes!
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(((Belle))) Such a frustrating journey. I hope and pray it all works out somehow for you.
Posts: 1132 | Registered: A Long Time Ago!
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Today I had an allergic reaction to one of the drugs I've taken, oxaliplatin. I went into anaphylactic shock and I can honestly say I've never been more scared in my life. I knew that if the nurses couldn't reverse the reaction I was going to die.
It got dicey for a while. The first round of drugs didn't work - I started to feel better, the tightness in my chest relaxed and I could breathe again, but then the reaction kicked back into gear, my heart raced and my chest closed up again. So they had to treat me with another round of drugs and one nurse looked at the other one and said "Go get Ruth, NOW." (Ruth is the first name of my physician.) I knew she was rattled because she never calls her by her first name around the patients.
Something they gave me, a steriod I think, made me throw up, so I was trying to catch my breath and vomit at the same time. Finally, a third round of benadryl and some other stuff that my doc ordered (I was too out of it to hear and process all the names of the drugs) did the trick.
By that I mean the chest tightness began to loosen and I began to be able to breathe. They were bringing oxygen, but once the drugs kicked it they said I didn't need it because my oxygen saturation had returned to 95%, I don't know how far down it got. After a few minutes it was back up to 98%.
The nurses saved my life today. If they hadn't been quick on the uptake, and gotten the first round of drugs into me so fast, I don't know what would have happened. I've been taking this drug ever since my first chemo session and had no trouble like this before. There was no warning, I just felt my heart pound and my chest begin to tighten so I just called out "Sharon, could you check my pulse, it seems fast."
She immediately turned off the infusion, before doing anything else, to prevent any more of the drug going into my system and felt my pulse. She looked at me and said "It's racing 90 miles an hour and you're flushed." She then dropped my hand and called for another nurse to bring benadryl.
There were three nurses, all of them were immediately there with me, and didn't leave. While Carla ran back and forth for drugs, Jennie and Sharon stayed at my side. Sharon held my hand and talked to to me, reminding me it was important I stay calm. At one point I looked at her and said "If you can't stop this I'm going to die." She just squeezed my hand and said "We can reverse this, just hold on, it will get better soon." It took about an hour and a half for all the pain and tightness in my chest to ease. They made me stay there for a while, until I felt better, then they continued infusing me with the other drug - not the one I reacted to. They sent me home on the pump like always and told me that I would have to do a regimen with 5-FU and leucovorin only from here on out. No more oxaliplatin.
That's good, because the oxaliplatin is the one that gives me the worst side effects. That, and taking it again would probably kill me. The doctor said that this type of thing is rare, but that if patients do react to oxaliplatin it's usually not until they have a lot of it in their system, normally around the 7th or 8th infusion. Today was my 8th.
I'm doing okay now, I'm still a little shaky. Wes and my Mom are going to go back and get my van, I drove myself to treatment but couldn't drive myself home. Let me tell you, three big doses of benadryl followed by a chaser of phernergan will mess with your head. Once everything was calm and we could laugh again, I told the nurses I should enjoy it, people pay good money on the street for the kind of high I had going. Posts: 14428 | Registered: Aug 2001
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Oh, Belle! I'm so glad you're alright. I went into anaphylactic shock once, and it was the worst physical experience of my life, and absolutely terrifying. I'm so glad you had such good care. It seems you're getting all the "rare" side efefcts. . . I hope now that you're off the oxaliplatin that will stop.
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Ohh Belle, I'm so sorry this is happening to you. It seems like everything possible is going wrong with your Chemo.
Let's hope that your string of bad luck with side effects will be balance with some really good luck and a full recovery.
Posts: 12591 | Registered: Jan 2000
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Allergic reactions (especially to drugs - since they can just suddenly manifest) are definitely scary things. I'm glad you had such good nurses there to help get you through it. Posts: 5879 | Registered: Apr 2001
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Nurses are really amazing. I wonder how many people who have not beeen hospitalized realize just how much they do.
Posts: 10890 | Registered: May 2003
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Wow that was scary to just read about. I am so glad that you are ok. I hope things go smoother for the next bit of treatment.
Posts: 416 | Registered: May 2005
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quote:There was no warning, I just felt my heart pound and my chest begin to tighten so I just called out "Sharon, could you check my pulse, it seems fast."
Thank goodness you were quick on the uptake yourself. And yay for your nurses, indeed!
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I'm impressed you had the presence of mind to even *ask* the nurses to check your pulse -- i know when i'm in a hospital setting my nerves are always completely shot, i dont know if i would have picked up on my heart racing, or been able to process it as a negative thing, since i'm usually so pre-occupied.
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Man. Add me to the list too. I'm glad you've got such skilled people taking care of you, Belle.
Posts: 16059 | Registered: Aug 2000
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The doctor said that this type of thing is rare, but that if patients do react to oxaliplatin it's usually not until they have a lot of it in their system, normally around the 7th or 8th infusion. Today was my 8th. ![[Big Grin]](biggrin.gif)
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