Starting chemo February 2020
Comments
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hray1993, good to know. I'll try that.
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Craftylife- I hope your port placement went well today.
Morrigon2575- I hope your first chemo goes well tomorrow. I’ll be praying for you.
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Thanks! I'll check in after it's over to let you know how it goes.
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My port revision seems to be okay. I really won't know until Thursday when I go to my first round of AC. I just know I'm finally able to move about without much pain. I have not been told to not wear nail polish or anything of the sort by my MO.
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How does everyone feel with their port? I feel out of breath, more tired than before and like if I had air on the side of my back where the port is. I don't know how to explain it. My MO and breast surgeon checked the port and they think everything is okay but I hate that feeling.
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what’s everyone doing for head coverage once you lose your hair? Wig? Turbans? Scarves? Hats? Rocking the bald? I’d love to see them. I have these turbans in my cart I’m going to buy soon but I’d love to see what others are doing. I may end up just rocking the bald, I’m not sure yet 0 -
Cute turbans! I have a big, square face. I’ve found that I need a hat with some kind of rim or bill to balance it. I’ve bought a couple newsboy caps that I like. I think I’ll have a hairdresser friend help me figure out how to tie scarves in a way that’s good for my face shape.
You’re young and cute and could totally rock the bald!
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dysonsphere- so glad your port revision has gone well and that you are out of pain.
ScatteredEnergy- so sorry you’re feeling bad with your port. That does sound like a strange sensation.
I actually have noticed that I’m feeling really good now that I’ve had seven weeks to recover from my bmx and reconstruction. We went for a hike the day after my port was placed. My energy is back and now it’s time to knock it back down with chemo. Sigh!
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Hray, I liked the turbans my first time and plan on using them again. I have a wig but didn’t like it. Those turbans in your cart are cute and reasonably priced. I would sometimes add a stretchy headband or a pin for a different look. I did not use a sleep cap. I liked the turbans because they were quick to put on. I would go without at home but if someone came to the house I could put it on quick.
Yesterday was a doozy! I used the hibaclense at 11:30 shower. I was supposed to go to the hospital at 2:00 but they called me in early. By the time I got there my chest had broken out with a rash. I was on hold for twenty minutes while the surgeon decided to do the procedure or have me wait till Thursday (seriously?). Finally got the go ahead and then it took the nurse three sticks to get the IV in! I looked at my husband and said “No more surgeries!”
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thanks for the compliments on the turbans everyone. I wore the diy turban I made in my profile pic out to town just now to run a quick errand and got so many stares... I haven’t lost my hair yet but I’m trying to get used to them and people’s reactions before I shave it.
I’ve just discovered those little fabric type headbands that kinda look like a bandana tied if anyone knows what I’m talking about. I thought about wearing some of those when I just go bald without a turban but idk how they will look. I’ll see if I can find one to show what I’m talking about
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hray1993, I "want" to rock the bold but I also live in Miami, Florida and I don't want to get sunburn lol. For now my plan is scarves, hats, and baseball caps. You saw the scarf I posted earlier and I also bought some of these. We will see how I feel once I'm actually bold lol
Also, I don't like the look of headbands on bold heads. I think we look like old ladies trying to be little girls/babies so I don't think I'll do that.
TexasMama, I'm so glad you are feeling back to normal. I hate not being normal so it will be hard.
Craftylife61, thank God that worked out.
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Craftylife- that does sound like a doozy! I hope you are recovering well.
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scattered, that’s kind of what I was thinking too. That it might look a little too babyish with the bald head. Is the one you just posted comfortable? I saw that and thought about adding it to my cart
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Just got back from my first treatment.
I put the Lidocaine Cream on (1 hour) before going and, then asked for their freezing spray. I didn't even feel a pinch, it was great, no pain!
I had to get an Iron drip because my iron was low, then the steroids and the anti-nausea medicine. I also asked for a sedative to help get over the dignicap hump.
The dignicap wasn't as bad as I expected, you get used to the cold pretty quickly and since I'm getting 2 Chemos first then 2 Immuno Therapy drugs I ended being completely done with the last infusion at the same time the cap has warmed up enough to remove.
My place doesn't do the Neulasta patches so I have to go back on Friday for the Nuelasta shot. I don't mind this, the place is 1.5 miles from my house. I asked and, they said for me to take Claritin and Aleeve in the morning and Aleeve at night for 3 days (day of shot and 2 days after shot). They said this will limit/eliminate any pain from the Nuelsata shot.
I also asked about the clear nail polish and they said I can use any clear nail polish/nail strengther to prevent discoloration or lifting/breaking.
I also bought Ice Mittens and Ice Socks for the Taxotere and, those were so cold. I had them in the freezer overnight, packed them in a cooler with ice cubes and, they stayed freezing cold for 4+ hours.
I didn't do ice chips, my place doesn't offer them, I did have the ice from the cooler but, between the Sedative and the Benadryl I slept almost the entire time. I'm going to try to fight it and get some chips or an ice pop next time but, in the meantime I'll be extra vigilant with the Sales/baking soda + water rinse.
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hray1993, it is comfortable and lightweight since I'm in South Florida. I don't want my head sweating lol. I plan on ordering more colors.
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morrigan_2575, we posted at the same time. I start tomorrow so I hope it goes as smooth as yours. I was just telling my fiance yesterday that if i fall asleep in the beginning he needs to wake me up before they start the red devil because I don't want mouth sores. I just spent two weeks uncomfortable after major dental work and i dont want to go through that again.
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Hello everyone - looks like there is a lot going on!
Just had my second treatment yesterday - so far so good. Had good energy today. Last treatment I had the Neulesta Shot - this time my insurance approved the patch. I started taking Claritin about a week before my first treatment and take it every day. I am expecting to be very tired tomorrow and Friday as that is what happened last treatment.
Scattered Energy - really sorry that your port is causing you discomfort. Mine is hardly noticeable to me and it has been a blessing to have for my treatments/blood draws.
I got hats from headcovers.com - I wear simple light weight caps in evening when I am home, otherwise I go bald. I really like cloches for going out because they have a brim and some structure so I don't feel like I am sick. I have a wig because insurance covered it - but think I will wear my halo more often because it is really comfortable to wear with any hat when I am out and about.
Dysonsphere and Scattered - praying that your first treatments go well tomorrow!
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Maddy83f, thank you. How can I find out if my insurance covers wigs?
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i think you just have to call and ask.
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My first AC treatment is tomorrow morning at 730am. I spent the last 3 days doing "last time" things, like eating my favorite foods, etc. I am excited and scared at the same time. From reading the posts, it shouldn't be anything life changing but somehow I feel like it will be.
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morrigan_2575, okay, I'll do that tomorrow.
dysonsphere, I'm stressed out for tomorrow. So many scenarios going through my head.
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Morrigon2575- I’m glad your first infusion went well. Thanks for the information about the nail polish. I’ll give it a try. I hope your side effects are mild.
Maddy83f- I’m glad it’s going well so far. Did you have any effects last time other than fatigue? Do you have any tips for managing effects?
ScatteredEnergy and dysonsphere- Prayers and high fives for you. I hope you have a successful first infusion.
I’m still waiting for my insurance to approve the abraxane. My doctor wanted me to start it Friday. I really hope they approve it tomorrow. I’ll feel a lot better when I have a plan.
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TexasMama, ugh, some insurances are so hard. I hope it gets approved quickly.
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ScatteredEnergy and dysonsphere best of luck tomorrow. I hope your first treatment goes well
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Morrigon2575 & maddy83f, thanks for the updates~!
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Texasmama, I have been fine today. I went to dinner with friends.
ScatteredEnergy and Dysonsphere, good luck tomorrow.
I thought I was meeting with my MO Friday but...the center is having trouble getting their MO’s hired and vetted. So instead I will meet with my surgeon after chemo education on Monday and he will recommend my treatment plan. He did it last time, so I’m okay with that. I still don’t know when I’m starting and what I will have.
Morrigon and Maddi, thanks for sharing your experiences and tips.
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Scattered Energy: Re: insurance coverage for wigs: you need to ask if they will cover "cranial prosthesis". I got my wig at the boutique at my breast center and they processed the insurance claim for me.
I know how scary it is before the first treatment - it has actually been easier for me to not obsess about my cancer/chemo now that I have started chemo - the more unknowns I put behind me, the more relaxed I feel. That is why I shaved my head instead of seeing how long I could go... I just needed to put it behind me.
I tell my friends that I have two priorities every day - exercise and hydration. I walk every day except for the day of treatment and the only reason I don't is because I have my treatments first thing in the morning and am tired afterwards.
I brush with Biotene toothpaste and use the Biotene mouthwash - I have a set in the kitchen and our bathroom and try to remember to use after every time I eat.
I take Claritin every day - the nurse who gave me my chemo class just told me to take it everyday throughout my treatment. I start taking Advil when I get the Neulesta and take it every six hours for several days. The only side effect I have had from the Neulesta is the fatigue I feel for the next 2 days.
I haven't felt nauseous but my appetite is very 'selective' - I have primarily been eating yogurt and hard boiled eggs, and light salads. Not much else sounds good and I try to make sure that I get as much protein as I can. I drink water (preferably with lots of ice) and ginger ale. I have always been a good water drinker, but I found that water stopped tasting very good for several days - maybe Days 4 - 9. The advice given to me by friends who have been thru chemo is just to eat what tastes good.
I put the numbing cream on my port an hour before my treatment. I eat a yogurt before going to chemo and I bring a snack (usually a protein pack from Starbucks - the one with hard boiled eggs) to eat during chemo. I am on dose dense A/C T - eight treatments every other week. I chew on ice during the 'Red Devil'. My Red Devil takes about a half hour and my "C" is on an IV drip that takes about 45 minutes. I do not fall asleep during treatment - the nurses are very good at keeping me distracted so the time goes by fast.
One thing I have learned is that after a couple of days of feeling good it can get hard to remember that the reason you are feeling good is because of the preventative measures that you are taking. I did start to get a mouth sore about day 10 - and realized I hadn't been as diligent about using the Biotene.
I have noticed that my skin is much drier, sometimes I just want to lie down and rest, I don't sleep but just feel good lying down.
Please let me know if there are any more questions I can answer.
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Maddy83f, that was a lot of good info. Thank you.
My first treatment was today. Got there at 8 a.m., left at 12 p.m. The numbing cream worked. I didn't feel anything. I tried to keep the cold water in my mouth during the chemo meds but my teeth and gums are still too sensitive after the dental work I had done so I don't think I did a very good job lol. I'll see if sores make a visit.
Just went to CVS, bought Claritin, Motrin, and Biotin. I'm going home to eat and then take off make up and bed. My class for today was cancelled.
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First AC round. Checked in at 6:45 am. Yes, you read that right. Infusion appointment was from 7:30 to 11:00am. They did have to access the port twice to get just the right connection but thank you lord it worked!.
Okay, so I don't think I prepared much for this first day visit. I took Claritin the last couple of days and I've gotten everything on the preparation lists. I will report more as the days go on. Right now i just feel sleepy and like I'm going to be on the couch most of the day! Add me on ig under dysonsphere1 if you have an account. I love to follow.
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Great pictures, beautiful ladies! I’m glad it went well. Now it’s time for rest and lots of water.
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