Starting Chemo September 2015; join us!
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on a lighter note: OMG Lindy: Craziest, wildest game ever! Congratulations to the Jays! Were you able to be at the game?
Octogirl
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Southern - I like that! 👍🏻
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Annie, your symptoms sound like mine when I had my reaction the first time. I got beat red, and inside felt like I was on fire. Scared to go for my 2nd tx.
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Octogirl..yes, I was at the game and it was indeed crazy. The homerun by Bautista came in about 10 ft away from me!!
I'll be at the home games for the next series against KC. That should be a crazy series as well given the history between the teams during the regular season. No love lost there.
I pulled up the playoff game schedule to see where in my treatment plan the game days fall. I think I will be able to make the home games..yay..but then again, sadly, this is my life. Everything revolves around the infusion days and possible worst SE days..ugh
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Aga did you stop breathing or nearly?
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My kids and my husband are my job. It's been since September 8th that chemo started. Basically since then I deal with SE or just sit around bored. My mom and Jim have pretty much taken over and I just point and give directions. It's getting depressing. I feel defunct.
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(((CarolinaAmy)). I'm thinking about you. I really hope they can get this figured out for you. Have you gotten a second opinion?
Annie - We need to find something to buoy you up, get your spirits up. Can you plan something fun to do with your family this weekend. Even if it's just walking around a Fall Festival for an hour or something? Or picking out pumpkins for your stoop? I'm trying to plan little distractions like lunch with my girlfriend (I really need a good laugh) and taking my son to walk around the zoo for a while.
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Annie....seems like only a few of us are able to keep working, and even in my case, working full time, I am really only at part time capacity, but blessed to have a lot of flexibility in my job, a boss who is a genuinely caring person, lots of sick leave, and a wonderful staff who cover for me all the time. But I don't have kids at home, and hubby is (more or less) able to care for himself without my help. Even on my very best days, in the third week between rounds, I come home at five and collapse on the couch and can't move. You are in an entirely different position, and you don't have a staff (other than what Jim and your mom can do). I think your job is much, much, much harder than mine, so I vote you give yourself a break and just take the sick leave without feeling defunct. Much easier to say than to do, I know, but you do need time to heal.....take care of yourself first!
Lindy, I think you should go to as many games as your energy will allow. and hopefully the Jays can keep up this run. Until they lose to the Cubs in the Series, of course! :-)
Octogirl
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Amy - I really hope they someone good on your case and get your fever down. Keep your spirits up, we're all thinking about you!
Annie - I agree you need a good distraction this weekend! Maybe even costume shopping with the boys? That will provide you with hours of endless entertainment at home afterwards.
Starting tonight DD has her big choir production. She is as nervous as a cat in a roomful of rockers but she will do just fine. DH and I are going tonight and the whole family ( my Mom and brother and SIL ) are going on Sunday afternoon.
Today I get my house cleaned through Cleaning for a Reason! I'm so excited. I've worked so hard to get things out away for the past few days I really hit a wall last night but it's worth it. I have not been able to have more than 1 room in my house clean at a time for months.
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So sorry to hear CarolinaAmy. You are in my prayers. xo
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Ocotgirl,
I forgot to write back to your response about my working concerns. Thanks very much for the support.
I am working full time, but I'm fortunate that I can work from home during the bad cycle days. So far I've had treatment on Thursday, gone into the office on Friday for a full day, then worked from home Monday/Tuesday/Wednesday. Back in the office Thursday, Friday and the following 2 weeks until the cycle begins again.
This time I was able to go in for a half day yesterday (Wednesday after treatment) so that's a new development.
Like you, my team at work has been super supportive and have jumped in to help when I need it. I'm so grateful. I'm basically trying to save up any real time out of the office for when I'll have my surgery. I'll definitely want to take some weeks totally off and it will be more doable for me if I am accessible now.
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Speaking of thinking ahead. I need to ask some questions about radiation. My doctor said it would take 5 weeks, but do you guys know how frequent it is during the 5 week period?
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I've heard too a nice daily helps? That's what chemo nurse said in that class. While I'm not doing chemo yet, I get fatigued from the infection I've been battling and a nice shower with the soap that keeps my skin so soft and moisturized makes me feel a little better.
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Radiation is M-F for 5=6 weeks for me. Say is about 20 min sessions.
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Good east coast crisp fall morning ladies. I'm done with AC chemo! Last red crap yesterday. Had my usual nausea 5 hrs post infusion but zofran helped. Today is steroid buzz. Woke up 4 times last nite to pee and take Tylenol for my headache. Woke last at 530am then finally went back to sleep at 830 and woke at 10. Crap where did my morning go. Now I have a massive headache thanks AC.
Lindy good luck with your last. Soon you will be done. I start DD taxol in 2 weeks for 4 sessions. MO went with that because AC/T is strong chemo & the gold standard for TN. I almost backed out of AC right before and went with TC or another regimen but my MO was great & really listened to me and calmed my fears. The important thing is that I don't want the cancer to come back and my reoccurrence risk is 30%.
The nurse practitioner I saw yesterday (my MO was on vac) said DD taxol is a 3 hr infusion with 1 hr premeds. So looks like I will be snoozing for a bit during the infusion with the Benadryl they give. The nurse practitioner said I can take B vitamins with taxol and after 1st infusion if I have problems with neuropathy I can take glucosamine. She also said here is no proven info on icing finger & toes which is same as MO said.
Someone posted about black marks on their finger (sorry don't remember who). I have that and some tingling on my left hand and palm. My nurse yesterday said its a SE from adriamycin. I didn't have my fingernails polished last week and I know I read somewhere to keep your fingernails/toes covered with dark polish helps. So I did have mine done on Tuesday. It was a nice relaxing treat before chemo.
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Annie, I didn't stop breathing. I told the nurse to stop it right away. My arms also went numb. She said I only got a few drops. They gave me more steroids and then restarted it, and I was fine. What did they do for you? Epi pen? That must have been so scary! How are you doing on the new med?
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moo to boo I had cleaning for a reason last month and they were great. Gotta really appreciate all the donated services.
I forgot to add in my last post that I went early before my appt to pick up my wig I ordered from patient services at the hospital. Well it was horrible. Looked nothing like in the catelog. It was a Paula young wig. Why do all wigs look like bad 80's rocker on me? The patient service rep felt so bad that she is reordering my another shorter wig with a monofilament top. Plus she gave me a Pantene beautiful lengths human hair wig that the company donated to the hospital. She said I could prob get it dyed to match my old color after I had it cut. It is really light blonde. My pre buzz color was hi lighted darker blonde with brown low lites. I was shocked that she gave it to me. It was still in the original box wrapped up in netting and with its tag on it. I do have another wig that is a hand tied monofilament top that is from Racquel Welch that I had cut 2 weeks ago but have not worn it a lot
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What's the reasoning for using nail polish? I never wear it. Does it help with something that I should get my first bottle in a zillion years?
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Ugh - radiation is M-F. I didn't realize.
It's going to really suck dragging into the city every day for 5 weeks when I also have to be at work. Maybe I can get early morning appointments before work? Probably should start asking about this soon.
Thanks for the info, Arista!
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Aga they turned it off and gave me oxygen, steroids, benedryl. It subsided almost immediately. It happened so fast so they decided to switch meds. The Adriamycin is harder SE wise.
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BTW - I'm getting super frustrated with the mouth stuff. My lips are pretty numb. I can't taste anything.
Today I was craving something salty. I ate something salty. Nothing. Seriously...everything is like sawdust.
And I've started using the magic mouthwash again, waiting for it to start working....
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Ariista I'm not sure. I read it on another thread. I didn't ask doc about it; only if I could still go to nail salon for regular manicure. I think it had something to do with how the light affects nails and can help with the ridges and spots chemo causes to nail beds.
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Annie for constipation this round I took a stroll softener nite before chemo and a senacot the nite of chemo at the nurse practitioners suggestion. This morning ate some oatmeal and some warmed prunes. Success first time going the day after chemo. Less abdomen cramping so far. Now gotta keep trying to get alternatives to water in for liquids. Water even with added flavor I can't get down since last infusion. So iced tea and iced grape juice it is.
Can you all tell I'm on a steroid high? Dreading my nasty neulesta blast this evening.
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edwsmom, ask about the canadian protocol for rads. It is a three week program but not appropriate for everyone apparently.
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I'm on the fourth day of full on metal mouth and no taste. This is getting old!
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i was told that the rads with less days can work if your boobs are smaller and don't lap over your skin when you're laying down. That's how it was explained to me.
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Hi all,
I've been trying to keep up but this is an active forum! Love all the photos of you brave people with your buzz cuts. I don't have the nerve to post a photo!
Had my final dose of AC on Monday (yay!) and glad to have that behind me. Slowing down now and figure I'll be on the couch this weekend for sure. It seemed to take longer to bounce back from the 3rd dose, so I sure hope to feel better by Tuesday or so. And no more Neulasta either! Or steroids!
Then I start 12 weeks of Taxol, once a week. I see some of you have that regimen and others have the 3-week regimen? I sure hope it's easier than this AC stuff. The doc told me that the 12-week regimen would make it easier to keep an eye on neuropathy symptoms and that she could stop it after 10 or 11 rounds if necessary. I really don't want that at all since she said it could be a permanent condition. Getting old is bad enough without something like that lingering around for the rest of my life.
Glad to see that Grey is back with us.
Annie, please be careful. Sounds like you're getting stuck with too many "pain in the ass" issues!
Edwsmom, yes rads are 5 days a week. I'm 35 miles away from the hospital and dreading that daily drive! I work at home only went to "town" once or twice a month before all this started. I guess I will start that around February or so. Not sure what happens if there's a snowstorm. I live in the woods close to the Blue Ridge Mountains.
OK. I've overdone it for today. Potential frost this weekend so had to clean up and bring all the plants inside.
Take care, everyone. This sucks but we'll get through it!
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Thanks to those who posted info about radiation - I knew it would be daily, but wondered about duration. I'll ask my PA says next week.
I'm dreading starting Taxol in 4+ weeks, but have read that weekly = lower dose (lower intensity?) than every two or three weeks. So I'll hold a good thought on that.
Hang in there, everyone. We'll make it through this. Here's a hair loss photo to make you laugh!
(Makes my big nose look even more enormous.)
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Hi all.
We've been away for awhile, but trying to catch back up. My wife just received her 2nd dose of AC last Friday. We were able to go the Oregon game again the next day. And again, they lost. My wife is doing pretty well. No nausea, no mouth sores, etc. She does have the steroid buzz during the weekend after the infusions. Gets a headache and has some skin pain on her face and neck for a day or two after. Does anyone else get that? She's been doing better than we both expected though. Even our oncologist called her the "rock star" because she couldn't even tell she was on chemo. Of course that was right before her hair started going, she finally had it shaved on Tuesday. (I'll include her bald pic.) It went well. Her Mom was there with us and my wife's regular hairdresser shaved it. They were all laughing and having a good time. Her hairdresser wouldn't take any money and gave my wife a big hug as we left. We have a wig, but my wife just wears a hat over her bald head half the time.
Our main concerns are keeping her red blood count, up. It was down for some reason when she started chemo. It was normal the day of surgery, so they don't know why she hasn't bounced back yet. We went to a naturopath who was referred by our oncologist. We wanted a connection so we could be careful about not interfering with chemo. She put her on Antler 8 and CoQ10 for her heart and told her to eat more red meat and protein. The problem was the deer antler stuff looks like a bad idea after looking it up on the internet. My wife contacted the naturopath who said she would look into her concerns, but has yet to answer the question. We had the supplements approved by our oncologists office, but only got a response from the nurse who OK'd them. We are still awaiting a response from our oncologist personally. The lack of communication has been frustrating. She's also stopped taking the CoQ10 until we get further confirmation. The good news was at the 2nd infusion her red blood count was higher than the first, so at least we're going in the right direction for now just using diet.
We met with our new radiation oncologist yesterday. We had been told that everything is pretty standard as far as that goes, so we really didn't need a 2nd opinion, but that wasn't the case. They have a different technique to protect the heart using a new machine and holding the breath. They said the machine will be up and running by December, so it should be all system go when my wife starts radiation late Jan/ early Feb. The other thing that was different that I asked the oncologist about was the fact she wasn't planning to radiate the internal mammary nodes. She said it would put more risk to the heart and was controversial. The first guy we had said he was going to radiate that area. It makes it tough to know what the right choice is. My wife had 4 positive nodes on the other side. I don't want to leave nodes alone that could also be involved. I know, I know, I'm jumping ahead, we have time to get that figured out. This thread is about chemo.
My wife has been working pretty much full time, with the exception of the the appointments she has. She does work from home on Mondays after the Friday infusions, but that's it. She did say that the 2nd infusion hit her harder than the 1st, so we'll she how she does next week when we go in for the 3rd. She has the option of working from home any time she wants. My wife's story was in the local Sunday paper this week and she was the centerfold (haha) of the special breast cancer publication. That was an interesting experience.
Oh, any Dodgers fans in the house? Go Dodgers!!
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FWIW, my MO advised against nail shops until done with chemo: risk of infection if cleanliness is an issue,which apparently it is at some shops. So, recommended to proceed with extreme caution. I don't think polish itself is an issue (I have no idea if it helps and how it helps, don't think it can hurt in and of itself). I haven't had nail issues yet although they do feel a bit strange. I am rubbing them with coconut oil daily...
Octogirl
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