Ohio Chemo Sisters
Comments
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Agree on the weather & gardening! Tomorrow we are cutting all my ornamental grasses back. What a job. Gotta start somewhere, and I say when they start to be a nuisance it's time to whack 'em.
Kelly, I am so happy to hear you are feeling great! I was wondering where you had been and hoping everything was OK.
Everybody enjoy the sunshine & warmer temps.
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Ok ladies, I got my chemo date. I will start April 18. I will be spending the time between now & then getting my scans done (never had any before surgery) and getting my port put in. My question to you is...what, other than items to entertain me should I take to my chemo appointments. What are some of you must have/comfort items that made it a little more bearable for you? I'd love any chemo advice as once again, I'm going into unchartered territory:)
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jojo, I used Biotene toothpaste & mouthwash thru chemo. It's expensive but lasted the entire time. Tastes nasty but so worth not having mouth sores. I didnt use it the first treatment, big mistake. Also, dry mouth will lead to cavities and that's the last thing you want to deal with. I also used wetwipes when the D hit. Kleenex for when your nose starts to run after all the little nose hairs are gone
What chemo will you be on?
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I had my husband taking notes while I talked to my oncologist, so I'm pretty sure he wrote the correct stuff down:) 6 rounds of taxotere, carboplatin and herceptin followed by 11 more rounds of herceptin alone, all given 21 days apart. My oncologist said that most women my age (43) seem to "breeze through it", lol. I think she's pretty optimistic, but I hope she's right.
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Some women have better response to the Herceptin when it's slowed down. Mine were 30 minute drips. I was so achy. It was much better when they ran the H over an hour. I had Aloxi & Emend iv drip both pre chemo. I also had steroids day before, of and after chemo. Didn't have nausea just really bad indigestion. Took Prilosec for that. The chemo was easier than I thought it would be. I buzzed my head around day 17 after 1st chemo. I couldn't stand the mess.
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I'm not sure how long each of the treatments will be, but I know they told me my first treatment time would be 5 hours(not sure if that includes the class time?) and then it would be 3 hours after that & then shorter once I'm just doing the herceptin. I too have to take steroids (dexamethasone) the day before, of and after. I know she prescribed an anti nausea in pill form too. Not sure if any anti nausea will be given in iv drip before or not. Glad to hear it wasn't awful for you. That's encouraging:)
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jojo - I took the anti-nausea drugs as directed for 3-4 days post chemo. I didn't want to be sick and my sisters (both nurses) recommended taking before symptoms so I did. It worked well for me. For chemo day, I wore comfy clothese, took an extra sweater, and my laptop. I had a 6-8 hour day over lunch so packed my own lunch with foods that worked me. I used Aveeno night cream during chemo since it caused my skin to dry.
I also had a prescription for Ativan to get me through the rought times - it worked for me.
Best of everything to you as you start chemo. My regime was different but just take it one day at a time.
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jojo - I did TCH too and still get Herceptin every three weeks. Chemo day will mostly be boring. Sometimes the Benadryl they give pre-chemo makes you sleepy so dress comfortably. It will be a long day so take some entertainment! I got infused on Thursdays and usually felt pretty good until Saturday evening. I think alot of my aches and pains then were caused by the Neulast shot I got the day after chemo and not the chemo itself. Everyone told me to take Claritin the day of and for several days after if I got the shot. It didn't seem to work for me but some swear by it. The most unpleasant part of chemo for me was the loss of taste buds. Mine were screwed up for a week to ten days after each infusion.
I agree about the Biotene, it helps with dry mouth. I also used a vaporizer at night and put a small amount of Aquaphor on a q-tip and lightly swabbed the inside of my nose. This chemo regimine is notorious for giving a dry nose too!
You got this girl! And remember you can come here any time you need advice or just to whine, we've all been there!
Thanks Debbie....I do feel great! We should plan a get together soon and add jojo and some of the other new sisters! We are long overdue!
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JoJo - you must be relieved to have a start date. Nothing to look forward to, other than getting it under your belt.
I had a "chemo bag" I always carried. In it I kept chapstick. Hard candy to suck on. A fleece blanket. Ipod & earbuds. Something to read - a novel passes time better than magazines. On a good day I could work on my laptop and my MO had wi-fi. I never liked what was on the TV in the treatment room.
I always carried my spiral notebook with me. It kept me busy to write down the infusion nurses names, when I sat down in the treatment room, when the infusion started, what order of drugs they gave me, when I was finished. (What a control freak, right? Ya can't control the cancer but you can at least take notes, LOL!)
I took steroid pills they day before, the day of and the day after - and it was in my infusion. If it had not been for the Neulasta shot the day after, I would have felt like wonder woman, that is compliments of the steroids. I always felt pretty great on chemo day as it was 3 weeks after the last one - then you get knocked on your ass again! I also had a prescription for Zofran, which tells your brain not to puke. Phenergan is another good nausea pill. It gives you immediate relief and makes you sleepy. The Zofran takes a while to kick in.
Taxotere ... if your eyes water, those are the "taxo-tears". (And unfortunately the taxotere was the culprit when my lower leg neuropathy presented about a month after I finished chemo - ugh.)
My favorite foods during chemo were the Bob Evans individual mashed potatoes and mac&cheese. Comfort food. Also I could not tolerate anything carbonated, or alcohol the entire time I was on chemo. (So the mashed potato carbs took the place of beer, LOL!) Greasy french fries turned my stomach. You eat whatever tastes good.
I hope this helps! Keep us posted.
Kelly - yes, let's get together, how about a Tuesday evening at Jerzees? Eric Brook runs an open mic there, sometimes we go.
Enjoy the warmer weather, all you Ohio gals!
Debbie
Agree on the Biotine toothpaste. Tastes funky but it really does work. My doc gave me pharmaceutical samples, I never had to buy it. There is a mouthwash too, which is nice to have if your mouth is so sore you do not want to brush. (Yeah it can happen.)
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Debbie - a Tuesday night sounds great! Let's see if Diane can come and if any other ladies from this thread who live in the Canton area are interested!
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I can make a Tuesday as long as I`m not traveling.
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Kelly, Your new avatar is adorable.
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Hi ladies! Novelty, OH........Brand new....dx with invasive ductal and lobular...HER2 +, ER+/PR+...would love to learn everything........
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Dana, welcome. You have come to right place to find information and support through these times. You must be overwhelmed.
My surgeon gave me a book that was a great resource for me. It is Breast Cancer Treatment Handbook by Judy Kneece, RN, OCN. You can find it on Amazon for about $25.00. I sat and read the book through (which was overwhelming) and then used it chapter by chapter as my treatment progressed. You will gain much good info on these boards but I found the book a great resource. There is also a list of reputable websites to access for information.
With surgery coming soon, you need to know how to care for yourself afterwards. My recommendation is to be cautious with exercise and range of motion exercises the first two weeks after surgery. I started range of motion exercises a bit soon and probably promoted my possibility of lymphedema. You may want to surf through this website for some pre-reading http://stepup-speakout.org/. No one wants lymphedema but if they do a sentinel node biopsy you will be at risk. You may want to Private Message Carol57 or Binney and ask for their post surgery recommendations. Not everyone gets lymphedema but the risk exists.
Best wishes. Keep us posted and always feel free to ask questions.
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sewingnut - thank you!
Dana - welcome to our little thread. We've all been there so if you need info, advice or just to let off some steam...we get it! Do you know your treatment plan yet? Once that is determined some of the shock will go away and you'll feel more in control.
This Tuesday would be great to get together...anyone else available this coming Tuesday to meet at Jerzee's? It's right off Rt 62 and I-77 in Canton.
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I can make Tuesday.
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Hi girls! Does 7:30 at Jerzees tomorrow 4/16 work for you?
Debbie
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Debbie - I'm in! I have to pick my daughter up at the Akron Canton airport at 6:00 but should be able to make it by 7:30. Looking forward to it!
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We will be outside at the patio bar.
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Diane - can you make it tonight? Anyone else interested?
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I would love to meet you ladies, but unfortunately, I am unable to come tonight:( I'll make it work one of these times, I promise! BTW, my chemo date was moved to next Thursday, the 25th. So anxious to get this thing going! Have fun tonight!
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Jojo69 ... We will catch up eventually! Keep us posted on how your treatments go ... I will be praying for good blood counts and minimal side effects!
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I was going to try and make it but it's been a busy day and I think I will stay home and vegetate. I will make it next time.
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jojo - Good luck with your first chemo..you got this!
Diane - we missed you last night so we'll have to plan another get together soon!
Debbie - great time last night...good food, great music and wonderful new friends. Thanks!
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Hi ladies! I thought I'd give everyone an update since I started chemo. I've had an interesting turn of events of late. My oncologist called me at home on a Sunday afternoon a few weeks ago. Nervous, cause that's never a good sign, I called her back. Turns out that as she was going over my info she discovered a discrepency in my original pathology & the final pathology from my surgery. The first pathology(which was done with IHC) deteremined that I was HER 2+, where the final pathology(which was done with FISH) showed me as HER 2-. She called the hospital where I had my original diagnosis & asked to look at their results again. The pathologist there said he was confident in his original diagnosis. So right up until the morning I started chemo my oncologist was sure what to do. If there was even a chance that I was HER 2+ she wanted to start my chemo with the herceptin. She decided to just start without the herceptin & change my chemo to taxotere & cytoxin, rather than the original taxotere, carboplatin, herceptin. She sent my cancer for oncotype & asked for the original pathology be sent for FISH testing. She finally got everything back this last week & all but that original diagnosis was HER 2-! She feels the first was just lab error & she feels confident that I am HER 2-. She said this NEVER happens & it's a miracle. My oncotype was only 14! She said my re-occurence rate with just tamoxifen is 9% and with chemo & tamoxifen is only 6%! She & I both feel that doing 4 rounds of TC (especially since I've already done 1 round) is worth the side effects to get that extra 3%. So my original diagnosis/treatment was 17 treatments total between the chemo and hercpetin followed by tamoxifen is now only 4 TC treatments followed by tamoxifen! And with a super low re-occurence rate! I just cannot believe how much that little error has changed everything. I am so thankful my oncologist caught it.
As far as the chemo, the first round wasn't bad at all. I did have to go to the ER one night. My WBC tanked & I spiked a fever. They just sent me home with a round of antibiotics & my numbers were up again 2 days later. I was really proactive about taking the zofran & had no nausea at all. I had a few aches & pains with the Neulasta shot but nothing I couldn't handle with some tylenol. I was really really tired most of the first week, but I'm at day 9 post chemo & I feel great. I have more energy & was able to get a lot of stuff done yesterday & today. Biggest complaint is that I can't really taste anything. Everything smells so good, but tastes like nothing. Not bad, just bland. I'm a foodie, so this is a hard one for me:(. Overall, I really can't complain at all. Nothing has been nearly as bad as I had imagined. Of course, I still have my hair. I may change my tune in a few weeks:)
Ok, sorry this is so long winded. I just wanted to let you all know how I'm doing & share my good news:) Hope you all are enjoying this beautiful sunshine. I know I am:)
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Hi my Ohio sisters.... surgery on 4/18/13 went well, long, but well...I was kicked out at 23 hours. (Cleveland Clinic). Healing well, but painful...having difficulty with many of the pain meds...I seem to be allergic to most of the good ones.
My grade went up to 3 due to my pathology..so they added a few more test prior to final treatment plan! I go back on May 15 to finalize my treatment.
More waiting! -
jojo - Awesome news!!!! It's so wonderful you got good news in the midst of all the bad that comes along with this diagnosis! I am doing my happy dance for you!
ChickaD - Glad to hear your surgery went well. Hope the pain is improving so you don't have to worry about those pesky pain meds any more! Keep us posted on your treatment plan.
I hope you all had as wonderful a weekend as I did! We had family over for a cookout and fire yesterday. I weeded and planted in my beds all weekend. Music on, shoes off, breeze in my hair (short still thanks to chemo, but hair!) and the sun on my back. What a glorious weekend God gave us.
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JoJo - great news, wow! I am really glad your onc trusted her gut and had the re-test done. What a difference. YAY!
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Hi ladies...doing ok...started my 1st chemo this week and came thru well with no real se's so far....thank God...flying this weekend to our house in Florida for R & R YAY
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ChickaD - glad your first chemo was uneventful! Enjoy the Florida sunshine (I hope they have it this weekend) cuz Ohio is not gonna be warm for the holiday.
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