Starting Chemo October 2012
Comments
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Wow! We must have it really nice at our MO's office. They do the chemo right there in the back of their office. There are several areas to choose from. One is a big area with about 8 oversized comfy recliners. They also have about four smaller areas on either side of the biggest one, each of those has two or three recliners. There are also 4 small private rooms each has a bed, recliner, regular chair, TV (with DVD) and CD player. I assume we're allowed to bring someone with us (all the gals in the local BC Support Group said they'd bring a girlfriend along to chemo and go to lunch or do something else fun afterwards).
I have no idea why I'm not scared of chemo. Honestly, I haven't been scared more than a few hours this whole journey so far (and that was after looking at botched reconstruction photos on the internet late one night!). I was more scared when I had the phyllodes tumor in 2009 and that was taken care of with a couple of lumpectomies.
Hoping all you gals have a great week with minimal side effects! I'm just ready to get on with it!
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My center does not allow visitors back with chemo patients...and I'm glad. It's one big room but we do have curtains around our recliners and we each have our own flat screen and remote with head phones. If someone was to bring a visitor that was annoying, I'd probably commit murder. I do not tolerate open mouth chewers, him smackers, pen clickers, etc. very well. Would I have liked my husband to have come with me the first time? Sure, but I weighed the pros and cons and I'd much rather do it alone then be annoyed for 3-4 hours. Now that I've gotten the first one under my belt, second treatment is Friday...I would not want anyone there with me because its bad enough I have to sit there that long. I certainly don't want to make him be bored.
Poke, thinking about you! -
Anyone using Cold Caps? I've started a new thread and would love to hear from anyone else using them. Thanks!
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I've pretty much decided not to do the Cold Caps although, from what I've read, they do work! Good luck with them and let us know how you do!
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Penguin cold caps- I've heard they work. I decided not to. I'm already icing my nails And chewing ice through taxotere. So really don't have the energy for cold caps.
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Marian - Good luck today with round one. I will be thinking of you and anyone else starting chemo this week. I didn't have the EMLA cream for my first infusion but I have it for next time. So far I am still waiting for approval for Neupogen from extended insurance but have been approved through Pharmacare at least. So will get it no matter what for the last 3 infusions that are Taxatere at least.
I bit the bullet and buzzed my hair. It wasn't near as bad as I was anticipating and actually feels better. The length was making my scalp feel like it was burning for some reason. Not sure when it will fall out but I am psycologically ready as I will be. Today is day 12 and I'm feeling pretty good now. Sucks to think in just over a week I will be back in the BGC for round 2. Not missing the nausea at all. I was lucky through this though...I ate good and only had a few issues with metallic taste. Ginger ale and apple juice taste like crap. I did nibble my way through the nausea as it made me feel better...sick of crackers now. lol
I hope you all have a good day today! Hugs
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Thinking about all starting chemo today and this week. Sending big soft hugs to all, here's to little SE's, at least bearable. I've been in a little fog the last week, but I've been trying to catch up on the posts.
Someone mentioned that they saved their hair after cutting or buzzing it; thanks for that suggestion. I have hair saved from each of my children after their first cutting, but i didn't think about it in this instance. I initially thought I would be buzzing after my first treatment but now that it has come and gone, I think I'm going to just cut it much shorter than it is currently. I'm going to do that tomorrow morning if all goes well. The top of my head is beginning to hurt on the surface, not a lot, but enough to notice.
Sorry, I can't remember who all posted what, I'll try to get better about that when I post, but someone posted about work. Before diagnosis, I was working 40+ hrs. I went back to work 9/15 full time but I was thinking about going into 20 hr work week. However, after my first treatment, I am now thinking about taking off the 1st week after treatment and working full-time the rest of the month. This first treatment, after my Herceptin shot, (edited: I didn't mean Herceptin shot, I meant Neulasta_I have the hardest time keeping those two separate in my mind...)has been very difficult for me. I'll be looking to the Triple + boards for help as someone suggested. I know this may change and I would rather continue working as much as I can. I don't want to sit home and think think think.......That is not always good for me. But I do want to make sure I am taking care of myself the best I can which I have not always done, and that means more time.
One of my co-workers has taken it upon herself to be my "breast cancer spokesperson at work." It angered me beyond belief though I know she doesn't mean any harm. I have only told those I thought needed to know, she didn't even hear it from me but has now shared my diagnosis in an open forum. I have been receiving calls, texts, emails, I've been pulled aside at work. Nothing negative, mind you and I do appreciate the kindness. It's just that it has made my working environment, well, more than a little uncomfortable. And then I feel bad for being angry at her. I just feel that it was my information to share, if I wanted to, with those I wanted to. And not at work, never at work. That's my vent for the day and I feel better already.
Oh-Infusion rooms- my MO's office has a large room with two pods. Each pod has about 5-6 very comfortable recliners and most have a curtain you can pull for privacy. My husband went with me for the first infusion. You can have one person so long as there is room. I first started going to this office to get iron infusions so I was familiar with the setup. I think if my MO's office offered it, I would opt for a private room though. I slept off and on through treatment but it seemed every time i opened my eyes, young lady across from me was looking at me and would start to talk. I didn't mind. I figured she just needed to talk and maybe no one else would. Don't know if I will feel the same next time though.
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Elocin- def check out triple+ boards. Ladies are great there. So much knowledge on a range of topics. I'm triple + too. Just had my first tx on 12th.
Sorry to hear coworker spilled the beans. I know I wanted to keep mine private too, but it got around. Hope all goes well for you. -
I am just updating from chemo room. This room has four chairs but I am the only patient (yay, window seat!) I had my anti-nausea meds through IV first which took about 20 minutes. Then the nurse showed me the two big red vials full of doxorubicin she would be manually pushing into my IV. That only took about 15 minutes. Now, I'm on a 45-minute drip of a big bag of cyclophosphamide. The IV hasn't caused me any discomfort at all. I am continuing to drink water and eat my crushed ice throughout. Almost done and physically, the only difference is a slight headache.
I was SO nervous coming here but I guess the injection part is a little anti-climatic.
Marian and other newbies, just breathe today. It's do-able. -
The whole info sharing thing has been interesting. From the moment I was diagnosed, I figured I'd let people at work know on a 'need to know' basis. Strangely, the very next day I needed to let someone know because there was an important meeting that conflicted with one of my consult appts. I decided to be very up front about it. Let me say here that this approach might not work for all but that it did for me. It was also pretty uncharacteristic of me in that I'm an extremely private person. I did not broadcast the info but shared it judiciously and let those I told know that it wasn't a secret. When I started preparing for surgery, a friend suggested I start a CaringBridge page. This has worked beautifully as a way of my putting out whatever info I want and letting friends/colleagues read as much or as little as they want. I have found it much easier than managing multiple e-mail lists (those who wanted all the details, some details, no details, etc).
I have been overwhelmed by the kindness of many. My work people have been amazingly supportive and I know I can count on them. Now that I'm back at work half days, they're glad to see me and amazingly tolerant of how I feel, what I can/can't do, etc.
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Thank you, Ms.Tori, and I am wishing the same for you!
301724- I consider myself a private person also which is why I took the route I did. In hindsight, I see how your way of handling your ordeal may have left me some control and saved me from being blindsided at work. My husband says I should have expected it; maybe he is right. But there is so much to think about and do during all of this, work was my place to go and simply work. I couldn't wait to get back after my surgeries. I felt I was still completely whole there, if that makes sense. One of my sweet co-workers, who mostly says hello and good-bye in passing, approached me last week and was almost inconsolable herself. It took me about 20 minutes to calm her down and tell her that I was going to be okay. But you never know whom or how you've touched or impacted someone's life and I will try to remember that (as I was reminded today). I do appreciate the kindnesses, I really do, but I am really glad my spokesperson was talked out of the surprise pink balloon party luncheon.
I'm off to look at wigs now! Yay!
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Marlene the chemo nurse last week said there was no wifi in the chemo rooms so maybe that has changed? I was there ealry for my PET scan and they needed to access my port for the radioactive injection so I went upstairs. Of course I did not have to time to use the EMLA cream but was pleasantly surprised that there was no pain at all! I leave soon to go back and do the chemo, same as you. Am hoping mine will go as well as yours. Thanks for the positive info and I will "breathe"!
We are going to pick up the Neupogen today so will see how much it will cost this time.
Marian -
Doh! A pink balloon party would have put me over the edge!
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Marian - I have a pretty good data plan I use for my ipad so that's how I was able to update.
Since I got home (chemo started about 7 hours ago now), I was feeling a little amped up so took my dogs for a 40-minute walk. I did notice the fatigue kicking in a bit, kind of as though I had recently completed a hard workout. I just took my time and felt good when I got home. I ate some chili but my taste buds are definitely off. Sweets afterward still tasted okay though.
I am drinking water like there's no tomorrow, but I find I'm not peeing as much as I'd expect. Anyone notice that slowing down from the anti-nausea meds or something? Now I'm just watching a movie, contemplating a nap soon. I hope everyone is feeling acceptably well today. :S
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Had my second treatment today as well as my pic line put in. On my way to the hospital in morning traffic I had a flat tire. I also forgot my cell phone - I didn't think chemo fog would kick in this quickly lol!
I couldn't remember anyone's phone number that I could call for a ride except for my boss who obligingly dropped me off at the hospital. Normally a flat tire that makes me late for an appointment would send me over the edge but not today. I left my car (and my 20 year old son) with my bank card and told him to "deal with it".
Unfortunately being late delayed my pic line and treatment for about 2 hours which made for a longer day but other than that I don't feel too bad.
It has been 14 days since starting treatment (dose dense) and I am just starting to notice a few hairs falling out. I also now notice the metallic taste of water (any suggestions on how to make it more palatable?).
Hope everyone else is relatively SE free.
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1st infusion today. Seen my MO first, she went over some SE with me and ok'd me for the claritin and gave me a script for some Vicodin for bone pain from my Neulasta. I have to go for my Herceptin infusion and shot tomorrow and finally get my first expander fill, yeah, been waiting for my fill for 2 months now!! During the infusions and still right now, I feel no SE at all. However I did take some sennekot and claritin just now and going to start my water guzzling and zofran in the AM. My infusion center is next door to my doctors, so it is really convienient. There are about 24 6x6 cubicles with their own TV/headphones, a comfy recliner and free snacks. I just sign in at the desk and picked a cubicle. One of the nurses came over and hooked me up. They were all very professional and helpful. I sucked on ice chips througout both my taxotere and carboplatin. I did not do icing. I keep my nails short anyway due to my job. The nurses ran my taxotere first, and titrated up. And my carboplatin was done in a half hour. I feel asleep the last 30 minutes before my taxotere was over. Got maybe 3 hours of interupted sleep last night due to the decadron. Went directly to the "feel better look better". Got some good make tips and a bagful a really nice makeup (clinique and elizabeth arden). Feeling great now, but I know it's the calm before the storm. I am ready to fight this!!!! My brother offered his wife's sevices to shave my head this weekend, so my brother and hubby both agreed to join in the fun. Well I hope everyone starting this week has a smooth and SE free infusion. We will and can do this!!
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jcolfor- I read in a pamplet today that zinc longenzes sometimes helps with the metallic taste. I'm sooo sorry your day wasn't pleasant. All of us these days needs some breaks in life these days.
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I havent tried this but i was told that adding lemon juice to your water may help.
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Interesting how all of have different protocol for the possible nausea. I got my big gun ones, Zofran and Emend prechemo along with Dexemethosone. No problem with the A/C during the infusions and so far so good tonight.
Marlene, I thought about a 5 PM Yoga class on my way home but thought that might be pushing my luck. It was too cold and wet to walk so am taking it easy. I was hungry and all that I ate seemed to have gone down weel. But then I guess the meds are still doing their thing so now am lying in bed taking it easy. I was impressed with the chemo center.
jcolford, congratulations on keeping it together with your flat tire. Thanks for the update on how you are feeling too on our 2nd cycle. I second what ridergirl said about lemon juice in water.
mumto5, sounds like a nice center and hope your evening has also gone well.
Rest well everyone; seems most of are now on our way with chemo. A nurse friend is coming over tomorrow night to do my first Neupogen shot. Turns out that we are only paying about $100 a cycle which surprised us but don't plan on calling the Victory Program to complain!
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My husband and I went to "chemo class" today -- didn't hear much that was new (thanks to this great group of ladies, I'd already heard it all!). The nurse didn't say anything about Neulasta so I asked. She said the doctor didn't prescribe it so he must not feel it's needed with my treatment (Cytoxan/Taxotere at 3-week intervals). That may be because the nadir is in the middle of the treatments and my counts should be recovered at the 21-day interval. She said they will check the blood counts before each treatment and will have to adjust the timing or add the Neulasta if I'm not recovering quickly enough.
The "Look Better, Feel Better" gang will be at the chemo clinic on Thursday night (how convenient!). The said they have lots of helpful tips and they even provide wigs free of charge! Count me in! I need to call and make my reservation!
I did ask about visitors. She said it's fine, bring as many as you like! She said one woman brought her entire family of six (sounded like all her kids were teens or older) and they stuffed them into the largest private room they had. They had a major "chemo party" going down in that room! But she said some people bring a friend or a spouse, some come alone and chat with others in the main area, some want to be in a private room alone and they sleep or read quiety or watch TV. The clinic has free WiFi and DVD players available. They also have several types of crackers, peanut butter, cheese packets, juice and water. And they encourage you to bring along your lunch or dinner, snacks, etc.
The best thing is that I'll be able to go in to work on Thursday morning if I want to. I meet with the doctor at 11:45 and then report to the chemo room down the hall at 12:15. She said I should be finished before 4:00. I'm ready to get this thing started!
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Hi ladies
Im starting chemo oct 24th. Taxatore first every 3 weeks 3cycles then 5-fu.
Im seeing lots re nails. So icings good? Oh and ice in the mouth whats that for??
Curious and open to any info pls that will help
!
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Glad you all seem to be doing so well. Just dropping by before I sleep. Long day - port surgery went fine as I was totally asleep.
My best friend and I had a terrible encounter at the wig shop. My first time, and I was so proud for not crying and the only woman working and "helping" me was SO RUDE. I was feeling so angry and hurt when I left. It's a long, negative story so I'll spare everyone. Needless to say, although the first one she handed me was perfect - I left empty-handed.
Sleepy ... Haircut tomorrow. Good night ya'll. Time for prayers. Takes a lot longer these days. Prayers for you ladies! xoxo -
Good luck for tomorrow Poke xx
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Thanks for the info about icing nails, but I am too paranoid for that. Same with cold caps. I want the chemo to go wherever it darn well pleases or else I'll wonder if I did it all for nothing.
MrsCich are you having surgery tomorrow? Good luck.
Still so angry about the wig lady!
I wondered if I would wake up morning after port and feel worse since the meds are all worn off, and I haven't left bed yet, but I think I feel ok. They left it accessed so I won't be poked tomorrow - just no shower today.
Haircuts!!! Ahh!
I may enjoy a mimosa since it is officially 24 hours after surgery and not yet 24 hours before chemo - it's a small window, but I'll take it
Love to all xoxo -
Poke, so glad you're not in pain due to your port. I didn't get a port. I get my TC treatment every 3 weeks through IV. Next infusion is Friday. Yes, I'm supposed to have another surgery tomorrow morning. I will know for sure this morning. My MO has to see me and my labs before she will allow any surgeries from my PS. This surgery isn't as major as the BMX thank God. 😊 This is an excision to cut out parts of my nipple (I had nipple sparing BMX) that are open and raw, then stitch them closed. Thankfully I have no feeling in either breast. Lol
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Here we go.. 2 days out from first chemo .. Spending WAY too much time reading and prepping for all potential SE. Love that we get little info from our docs on all of this but every patient is desperate for info and willing to share.
We'll be headed five hours away for the first treatment - port install and then chemo all in one day. Staying overnight in our home away from home STL
Shaved my hair into a Mohawk 2 nights ago - my stepson (13) can't look at me without laughing.
At 47 this is the most grown up I've ever felt-- dealing with life and death decisions. So far my spirit is good and my body amazes me at its toughness. I know I'm lucky in this fight to keep coming out with the best of the worse results.
People keep saying I'm happier and prettier than before diagnosis-- I guess sometimes it takes hard experiences to change us. My family is at the ready for getting through the next four months and kicking this cancer right in the ***.
I'm blessed with amazing family and friend support; an employer who has got my back entirely through this; a job I can work from home; great insurance; early diagnosis; and the means to access the best care in the Midwest.
I count these blessings everyday and hope all cancer patients find a way to count theirs.
And don't think I'm a Pollyanna ... I'm one tough tattooed pierced hell on wheels cynical woman who just started realizing life is too short to be anything but amazed! -
Caitgrace - I'm with you on Thursday! I had port installed at the same time as my BMX so it's been hanging out in my chest (pulling and pinching) for over a month. I'm ready for it to get put to good use! Actually it was great to have when I had my CT and Bone Scans last week. The nurse was trying to figure out how to get an IV in my right arm and sighed, "I suppose they didn't install a port did they?" As a matter of fact, they did! Yay!
By the way, I love your name. My daughter (13 yrs) is Catherine Grace but we call her "Kate".
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Welcome Caitgrace, you sound like you're in a good head space to start the chemo marathon. It's true that this diagnosis really re-focuses you and forces you back to remembering what's important.
I'm just checking in after night one. Out of fear of SEs, I must've drank 3-4 litres yesterday and so it definitely caught up with me, as I was up at least every hour last night to pee. I barely even have the red pee from the doxorubicin since it is so diluted! I think I'll keep it up since, despite the interrupted sleep, I feel good this morning. Luckily, I am off work at home for the week so I can focus on just taking care of myself. After the injection yesterday, my skin took on a really sallow look and my eyes seemed dull but this morning I've got some colour back.
My anti-nausea pill is dexamethasone which is a corticosteroid (yes, I'm reading alot too!) so that is keeping my energy up. To air myself out yesterday, I walked my dogs and then did my usual weight routine before dinner. As I mentioned before, my twin sister went through this experience 4.5 years ago and participated in a fitness study and she keeps emphasizing staying with whatever exercise regime you do, especially on the days when getting off the couch seems like exercise enough...!
Hope you had a decent night.
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Hi all - Poke - I had my port installed this past Friday. Was definitely not prepared for the pain and immobility that followed that since, after my 9/25/12 lumpectomy, I was able to sweep my front walkway the next day! Never even took a pain killer (discharged with Vicodin). I DO NOT baby myself in any way and have a high tolerance for pain, but I was blown away that I got discharged from the port surgery without any pain killers and told to resume normal activity in 24 hours. After the anesthesia wore off, wow! Also still feel it pulling and my shoulders are now feeling the brunt of soreness with still hunching over a little bit. But today, I am enjoying my last day of left side mobility - as port is in right side and left side will be lumpectomized again tomorrow! Good luck and take it easy today - each day brings less pain and more range of motion - I am sure we will both be happy when they don't have to start IV's with each infusion
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Hi all. Just got back from getting labs and visiting my MO. I got the ok to have my surgery tomorrow. Yay! Who knew I would be excited to have parts of my nipple cut out? Lol
My WBC was much better and fell in the normal range. She did however, recommend I get a pic line put in due to some necrosis of the skin where my IV was. So...tomorrow morning I have surgery and afterward I'm hoping to have the pic line put in that way Im already groggy and calm. The surgery is at a surgery center and the pic line placement is at the hospital in radiology so they aren't in the same location. Bummer. I was ok getting the IV for infusions because I didn't want a port and a pic line I imagine is uncomfortable. Anyone else have one and can share experiences??
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