Starting chemo April 2019
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First Taxol, dose dense, was yesterday at 9am. It went okay. Left the hospital at 230. The benedryl knocked me out for about 30mins and made me very groggy/messed up. We went and picked up the grastafil (or whatever it's called) and went for dinner out afterwards. I fell asleep okay last night, but woke up early this morning
. Laying in bed next to my sleeping husband. Our kids (5 and 7) are at a sleep over. I feel okay overall. I'm hoping I feel okay for going to town again and watching my kids play soccer today, but I guess we'll see. I follow the Taxol biweekly with AC biweekly. Then surgery then radiation. Should be a fun summer. Lol.
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Hi Ladies,
Can someone tell me whether you have shoulder blade pain after neulasta? What should I ask my doctor ?It went from my shoulder to my neck. It hurts even when I do not move.
I have my first chemo on Tuesday, it was uneventful. On Wednesday, I had the onbody neulasta. Shortly after that the back of my shoulder blade started to hurt, it was like the ligament torn apart.
Thursday morning I told the claritin, met with my doctor's PA, he told me it was spasm and my muscle was tense. (he was surprised no one told me about claritin). He gave me a muscle relaxer. It didn't help.
Friday morning I called the doc, she gave me tarmadol, I have been taking it for over 24 hours and it didn't help a bit. I began to think that it is not related to Neulasta. Where did it hurt when you have the Neulasta?
Both the PA and the doctor asked me to wait. But when will it even goes away?
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Just caught up with everyone..
Ilovevermont - that halo wig is awesome. I ordered one online to have an option of wearing it under baseball cap instead of wearing my wig all the time....failure but only wasted $25.
creaturekeeper - hope you are feeling better at this point.
Ellientta - sorry about your port placement - scary!
runnergirl1 - welcome. I was so foggy my first round from the olanzapine so second round I was able to take a little less and felt better
farfalla6 and msmarie - congrats on being done with #3. Side effects the same as last two?
Nikkithenurse - I will be curious to see how your side effects are as a lot of us are headed for taxol after a/c! I agree about this summer. Chemo will be done for me on July 9th and then about three weeks off and then 5 weeks of radiation. Then three months after that surgery on my other breast to match my reconstruction...ugh. What a marathon!
I am headed back to work tomorrow after being off for 2 months from my surgery. I am looking forward to having something else to focus on but worried about being more tired, etc. I have #3 on Tuesday. I feel like after #2 it took me a little longer to get back to feeling normal than after #1. I also have noticed my mouth being more sensitive and brushing my teeth stings because of the toothpaste. May try just brushing with baking powder.
Have a great week everyone and positive thoughts for minimal SE's for everyone and enjoy your good days!!
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Bam320 good luck on your return to work tomorrow.!
Have you tried or are you using the biotene toothpaste? I found both the mouthwash and toothpaste on amazon. Both re very gentle and help with the sensitive/ dry mouth issues. Hope that gets better for you
Fac03, I had a lot of general ache on day 4 so two days after nuelesta so I am not sure if it was from the injection or just coming off the steroids etc. My neck was probably bothering me most but it went away after a day. I did get on the Claritin a solid 3 days before the nuelesta though.
Laura
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Hi Ladies, or sisters.
As someone who completed 8 dose dense chemos on schedule(last one even came one day earlier than it should), if I may.
Neulasta pain- it literally felt like someone or something literally pushing/forcing every half an inch of my body. You are likely to ache all over. Try almost anything which you think can help you. Claritin, Tylenol with little bit of painkillers, Epsom salt bath twice a day, icy hot, asper cream are all things helped me to get thru. There was no single solution for chemo pain.
Please be gentle yourself. Including sleeping as much as possible.
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Thanks Castigame for the insight and advice. I was just sitting her debating if I should take the Claritin - my first treatment is Tuesday and I definitely want to be proactive on the SE if I can. You made the decision easier. No harm in taking it and if it helps with the bone pain then two thumbs up. I'm stocked with the other items as well. Will take your advice to be gentle with myself.
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I would definitely recommend the Claritin. There is no down side at all. I am done with 3/4 Acs with Neulasta and have not experienced any bone pain yet, and I've been taking Claritin every day: for the first cycle I did it two days before and 4 days after but I was having postnasal drip the other days and just started taking it daily.
Bam320: I had a blip with my second AC because of UTI/period/mouth sores because I was dumb (literally had too-hot pizza and chips the night my mouth first started feeling fragile, just wasn't thinking) so I did have a tough cycle, only felt normal by the three days before the next AC, but with # 3 (I'm now on day 5,) feeling fine, just some fatigue.
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Hi all,
Hope all are having a good weekend. As far as Claritin, I’ve been taking it all year for grass seasonal allergies, so it’s been in my system. I think it’s helped, I hardly have any pain from the Zario WBC shots.
But I do have another question. My tongue is white. Anyone else have a white tongue? My taste is off, just strange seeing it so white.
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The white tongue is mostly from dehydration. A good mouth rinse to help the tongue coating and mouth soreness is a teaspoon of baking soda and teaspoon of salt mixed with warm water. Rinse several times a day, when you get up, go to bed, after eating and during the night. It also helped the weird taste. I thought I was drinking enough, but my MO said a white tongue was dehydration and drink more. The lemonade helped a lot.
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Thanks Annie60,
I’ve been trying to drink a lot, but it’s just tastes so blah 😖 guess not enough.
Been rinsing with the biotene rinse. Will start the salt and baking soda rinse again.
On to more water 🥴
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fac03 I also have pain in my shoulders and neck the day after my Neulasta injects. It is more like a muscle pain then bone pain. I only took Clairitin the first round but didn’t like how it made me feel so haven’t taken it the last two times and the pain has been the same. But just taking Aleve has worked on my pain. If I were you I would try the Clairitin next time. It won’t make anything worse And hopefully will help! Wishing you the best
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I started taking the Claritin two days before my shot and sometimes take it five days later. The doc says it's okay to take continually if I want. I've had Fulphila three times with no major bone or muscle pain.
I have had a tough "out week" from my 3rd AC treatment. I never recuperated. I think the effects were cumulative. I had lots of fatigue and then on Thursday started with the sore mouth. I've developed sores and he white patches but I don't think it's thrush. The sores are near the pockets and the throat so it's hard to eat or drink. I don't want to get dehydrated as my intake has dropped by half. It's so painful to swallow. Even before this, I was doing baking soda rinses several times a day. Now, I'm rinsing almost every hour. I even did the ice when receiving "A". I guess it didn't work this time. My fourth treatment is scheduled for Wednesday. I hope it doesn't get postponed but I'm not looking forward to starting the process all over again. I am still deciding if I do Taxol or Taxotere next. Neither sound any better than AC. In fact, with the added side effects from neuropathy and nail changes, it could be worse.
After getting the mouth sores, I reached out to the medical team on the hotline number they gave me. The answering service took my complain on Saturday morning and said someone would call. It's Sunday night and I've not gotten a call. I wanted to see if they could order the viscous lidocaine or something else to help. This is not encouraging that no one called back. I'll discuss with the doc on Wednesday.
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Hi All,
On day 7 of 2nd round taxotere/cytotan. Usual tiredness, with rest indicated. The biggest difference is that surprisingly I've not had as many issues with pain or headache as I did with the first round (both were incapacitating first round). Partly I think because I have the Claritin in my system (taking continuously) but mostly because I asked that my steroid dose be tapered off instead of abruptly stopped. Apparently since on the steroid for such a short time, tapering is not typically indicated. Well.... being someone who is hypersensitive to medications in the first place, my MO decided to give it a go. It's like night and day. I think I must have been having rebound headaches, pain and fever (ended up last time with intermittent temperatures above 100.4 too) from stopping the steroid abruptly. Have not needed Tylenol once (thus far). First couple days out of round 2, I had acid indigestion, but Pepcid helped with that. Now I'm focused on my mouth (tenderness/tingling) and taste buds (nothing tastes right). Hope it doesn't get worse.
DebraC - I've found that while plain water isn't great, if I refrigerate some cucumber water in a pitcher, the cold cucumber water not only is a refreshing chilly switch, but I can see how much I'm drinking in a day. I added some mint leaves Saturday too, which was a nice change.
Bam320 - hope you have a great first day back to work!
Happy Monday - hope those of you up north (Madison/Chicago area) stay warm and that the snow doesn't stick around.
Rock on!
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fac03, I too had shoulder pain (spasms) that progressed to my mid-back. It was horrible. I tried muscle relaxants too and didn't help. I called the doc's office and was told a nurse would call me back. Waited all day and no call so I called again. I was miserable. MO said didn't think it was from chemo as I was almost at #2 and told me to take 800mg of Ibuprophen every 8 hours and it went away YAY!
BUT my acupuncturist said that is where your liver is located and it is working overtime and can cause spasms clearing the drugs. East vs West!
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Hello everyone!
Its been raining on and off here .My internet lines are underground so the conduits are filled with water. No internet when I want it.
I am at work abusing time right now.. hehe
Yes Farfalla6 My daughter just turned 16. I was in my 40's when I had her. I think its not easy no matter what but, I do know It seems scarier when your younger?
It's raining...again.
Tidbits... Have not worn wig.. first thing I bought, last thing on head. Itchy and not cheap. too much hair! She picked a LOAD out but still.. hehe too much. Yea, I'm not a good bald person.. Got some slouchy hats. much better.
Don't forget lidocaine if you have a port. I have not remembered. ouch... Not real bad but still.
Weight lifting light weights In morning and when I can later after work, Into 3rd week.. guys, its really s starting to help. I cant wait to try to walk more.. "weather" I want to or not.
I fell into a bag of jelly beans and potato chips on Easter. I did not come out very fast. until they were gone. Took me all day. :]
I think your all right about the allergy thing. Even if you don't have them, I noticed at chemo ALL the coughing and tissues and the onc. nurses said, even if you don't have allergies, it very irritating to a lot of people. My eyes and throat are shot so the said Claritin no (D) then yesterday at chemo they said try Zyrtec no decongestant. Claritin was supposed to help with the WBC shot. I shall try Zyrtec.
If I see one more add in a magazine about breast cancer drugs, Im going to need bail money...: ] yup.
Picture are great everyone! Keep on trucking.
I probably showed you this picture already. I just can't believe it landed right here in front of my bedroom window!!
Barred Owl.
Lots of good vibes,
Dorene
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Wow, Twelvestring, the barred owl is beautiful. They often hang around my house, too, and now and then we are blessed to be able to see one.
Thanks to all of you in this group for helping those of us following. I'll start my chemo this month, 5/10. It will be 4 rounds TC, so will be done with chemo (fingers crossed) by end of July. Then comes radiation.
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Wow that shot of the owl is stunning!
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For a light weigh head covering, google, youtube or use Pinterest to find out how to use a T-Shirt head covering. Very simple, cheap and comfortable. I bought a variety of colors for under $3 at Wal Mart and wear them everywhere. They are easy to dress up with a band or bandanna. Super easy to use and not hot. I watched the Youtube video Mylema Crowd TV. There are several videos out there that will show you how.
Annie
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Twelvestring60, LOVE the owl! Thanks for that!
Annie60, thanks for the tip on the tshirt headcoverings. Going to try that!
My tip is to use Caring Bridge to keep everyone you want up to date on you. I am finding the journaling to be very cathartic. Haven't asked for help yet but I'm only halfway through chemo so there is still time and its an easy way to get the word out. Go to Caringbridge.org.
Hope everyone is doing ok. Happy May Day!
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Hi Everyone,
I need a small vent, hope that is okay
Rough week. I thought that the third week after my treatment I would be feeling good. Well I clearly thought I am more invincible than I am. From a health perspective I am feeling better today but still feel like I need to vent. Here goes...
Today is my 50th birthday. My hair started falling out on Monday and most of what was left (a lot) fell out in the shower this morning. I thought, well isn't that just great (maybe with a swear word or two) So today is also my first hat day. Happy Birthday to me..
I contracted a bad cold/chest cough last week which carried on into this week ( no fever though) and also started the week with both a UTI and a yeast infection. Good times. Oh and I had a bloody nose last night. I was like really? What else? Bring it!
I am not celebrating my birthday as I do not feel very celebratory and I think friends/family don't understand but this is about me. I have been super positive throughout this whole thing but today I did shed a few tears today. It has been a crap week, and next week we do it all again.
That's it. I'm done.
Hope everyone is doing well and having a great day (better than mine
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Just a head's up that a storm took down a bunch of trees around my house Saturday. They restored power after around 12 hours, but didn't get phone or internet back until today and my house gets not cell service either so...Anyway, I'm fine. Spa Day #2 in progress, actually I don't usually take my laptop to spa day, but man, not having internet since Saturday is freaking harsh.
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12strings, what a gift, to see that picture of the Owl! I can't believe seeing such a beautiful sight from my window, but I'm a city gal, I see buildings and garbage trucks from my window.
Stayingpositive, I had a UTI after AC#2 and that was such a bad bad week, also had my period, felt miserable, but this cycle has been much better, but i so understand how you feel. I had a total crap week and felt like UTI and period was adding insult to injury and ruined what was supposed to be my "good days". But again, feel much better this cycle. This too shall pass.
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stayingpositive2019 - take the crap day and shed those tears! We have to sometimes - to give us the strength to keep going. Then in a day or so start thinking of something fabulous you can do for yourself after all this junk is over! Hang in there. Hugs to you.
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Hello from tornado alley!
Love the Owl 12string!
Stayingpositive2019 - I hear ya. Have your day. We all either will, or have needed to just cry... Then get back up, dust off, and go again. You can do this, and we are going through it with you. HUGS!!!
I'm in my second week of second TC round. Hesitant to claim "half way done" yet. I don't anticipate feeling close to 'normal' until just before going back for poison round 3. I think things are accumulative as I'm much more shaky and tired than I remember last round. Not as much stamina and oh, the mouth.... Biotene does help, but not much fun to eat when you cannot taste and whole mouth feels sore. Feeling fat, tired, and bleh...
Definitely a reminder that we can get knocked down. But we can, and do, get back up.
Rock On!
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Stayinpositive, hang in there girl! Better days are coming! Those tears are a release valve, let em flow.
We are all with you, have good days and bad days and sometimes just blah sit in the chair days.
My second round of TC was a little harder, mainly in exhaustion and flu like symptoms. Tongue getting better, I found the warm salt baking soda water rinse helped the most and taking in more fluids. Just bit the bullet and made myself drink. Gotta be better by Sunday, heading to the wine country with cousins for some R&R at their timeshare. Oh and my husbands band has a gig on Saturday, should go to that too.
12string, that owl is amazing! Mostly around my area we see and hear the geese migrating north.
Hope everyone is on the upswing for now.
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Stayingpositive, you get another birthday next year. Sorry this one sucked so much. Wishing you much better days very soon!!
robinredbreast, I have long said it doesn't matter how you get knocked down. It's how you get back up that matters. You're doing great.
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Hi Ladies,
thanks for sharing that some of you also experienced shoulder and neck pain. It helps to know that I am not alone, the neck pain is truly scary. But I am not sure whether my situation is normal. Today is day 9 after my first chemo. I am now taking muscle relaxers, oxycodone, tramadol and tylenol, but the medications do not lessen the pain, they just made me dizzy and wanted to go to sleep. I spoke with my oncologist on Monday, she suspected I may have blood clot (I had DVT operation in February), however, a CTscan of my neck did not find anything. therefore she just increased the painkiller dosage. The pain is unbearable. I am not sure whether I want to continue with the second cycle.
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Ladies, The Owl was amazing!
Funny story. We had a house fire on Christmas 6 years ago. All safe but, we had to move and rebuild. We were used to the woods and our friend had a beautiful place on a river close by. Th owls and eagles.. wow. At night, hooting. One night, I was hooting, 3 short hoots, 3 long, 3 short. They’re hooting back! I run inside tell my husband snd he's like, “awesome!” Next day were at the local hard ware store. Our friends house we were using live on same river. I’m outside talking to her husband about the owls. As we’re talking, we’re walking back in. They are looking at us like idiots. Ive seen the look. HE was running in his house that evening FREAKING about the owls calling back... Yup. We were the owls. Unfortunately for us, there was a crowd and the story is now told . People still laugh at me.. well done Dorene.
Staying positive, Bad timing on the birthday but bad days el stinko. But, you get it out and get back to positive the best you can!
I have one more A-C treatment the on to Taxol every week for twelve weeks. Funny , i have more trouble with the wbc shot and vitamins . Stuff gives me major chest pains . They said they see it alot in men. My eyes get dry and water heavily.. weird. Mouth sores. Biotin gel, rinse and toothpaste helped. And germ jail until shot kicks in.
Theres my wine. Dry, not fruity.
Hugs to you all!
Doren
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Well, today is a new day and feeling better! Thanks to all for your amazing support. I don't know but there is just something different sharing with a bunch of people who get it, so very much appreciated.
Fac03 - I am really sorry to hear you are having such a hard time and it doesn't seem right to me that they are just throwing more painkillers at it. I am not sure of your chemo regimen but I would have hoped that by Day 9 you are starting to feel better. I feel like you need to get in front of your oncologist to find a better solution and get to the bottom of it so that you are able to continue with your treatment.
Twelvestring60 - your owl story is hilarious and actually made me laugh out loud. I so needed that!!
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LOL and woot for the owls.
Day 1 after treatment 2 and omg, I pray you guys never have to do this recurrence business because it. is. ROUGH. Fatigue truck has been doing laps to flatten my butt on constant repeat. Went to the market, which is major production for me because I'm a stockpiler. Meaning when something goes on sale, I don't buy 5. I buy 50 (or a year's supply, whichever is more rational, LOL). Even with my husband driving the cart and doing all the lifting/carrying, it wiped me out. Came home and diamond painted rest of the day, hubs took care of dinner. I know I'll get some of my energy back soon, but I swear I wasn't this tired until I was maybe a month into weekly taxol last time? I don't even want to think about what my August is going to be like. Heart and Joan Jett are playing near Pittsburgh then, but have decided already that's not a hot idea. My brother was even like, Bear (family nickname), no, you'll eat those tickets, just chill.
Daughter is coming for the weekend and we're planning to hit a small local fair. If I rest tomorrow, should be all right for that walking and if I see red velvet funnel cakes at the food vendors, cheat day here I come. A colleague heard about my so bad very sad news and sent me 3 book freebies to cheer me up this morning, so that was nice. Classy lady. I also signed up for a Harry Potter themed paint night with 2 friends in June. So not a totally awful day. Rough doesn't mean you stop living. Rough means you pull on your big girl panties and keep right on chasing whatever adventures life throws your way.
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