Chemo starting November 2018
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My husband said my shedding was becoming noticeable so I let him buzz my head over the weekend. I has a slightly tearful moment as I looked in the mirror but rallied. At the risk of sounding too self absorbed - I look fantastic without hair. If it weren't so cold I would abandon the scarf altogether. The difficulties of regulating my body temperature without hair has provided me with a learning curve. I've discovered that if my head is cold it does not matter how many blankets I place on myself, the rest of me will never warm up. The no hair situation works a treat for calming down the hot flashes though!
I'm staring down the barrel of my next AC on Wednesday. I had a hard time falling asleep last night worrying about all the awful that's about to come my way again. I don't know why I let this stuff keep me up at night except worry is something my brain loves even more than caffeine and it will latch on any attempt to sit and really stew over something so stew I did until the wee hours. The mass in my breast feels so much smaller after just one infusion though, I can hardly believe it. It's such an odd, overwhelming experience to feel the chemo really working day by day. It's a scarily hopeful feeling. I hope all of you are starting this week out well. I'm thinking of you all and hoping for peace and good outcomes.
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JeannieK- I like the sound of your NP, that sounds like it was a really reassuring appointment. I didn't get to meet with my onc prior to my first chemo, just the initial visit to set up our chemo plan and it was such a fast and furious thing after that I wish I had just called and asked for a visit to reassure myself. Of course, this is hindsight. It never occured to me prior to the infusion that I would want that visit as a security blanket.
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Hazelnut. I do my second treatment tomorrow and although I’m not dreading it as much as the first time, it’s pretty close. I’m waking up from anxiety dreams and having to wake up enough to reassure myself and then try to go back to sleep. However I keep reminding myself that the first round wasn’t nearly as bad as I feared. Bad but not as bad. So there’s that. My scalp is really really sore. I had my husband shave it to help last night. Alas I do NOT have a good head shape. Who knew I was so vein. On a positive note, the more active I am, the less achey I feel. The weather has been crappy but it still feels good to get out. Good luck to everyone week
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good morning ladies, thanks to all for sharing your experiences. I start 1/6 TCHP tomorrow. Haven't packed yet, but suspect it's going to be an overnight bag. They said first infusion 7-8 hrs. Bring snacks, iPad , coloring book, and book, plus a blanket. Went to the dollar store today to pick up the stuff that I'm not worried about being inexpensive - bleach, plastic ware, plates etc. dirt cheap. Only my hats (oh I hope 
they're soft enough) were more than .99, 1.99 each. I promise I'll get some other mature ones 😂0 -
Asaka:
Yes, my hair started coming back in before I finished the chemotherapy. I finished 7 weeks ago and my new hairs are about half a centimeter long.
My nails, however, were fine until after I finished and then started breaking about 3cm down the nail bed. I have had to glue the breaks witu KISS nail glue. I probably should have put a few layers of nail polish or clear coat on them after I finished or a little before but I thought they were going to be ok.
I'm glad to hear that your husband's cousin is doing well.
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Hazel-Nut:
The original anti nausea medication I was given during infusions caused things to taste sweet in a bad way, for most of my chemo cycle, and I found it so unpleasant that I would find myself thinking about how much I hated it and dreading the next infusion because of it. When I discovered it was the anti nausea meds and not the chemotherapy drugs themselves, I asked if there were other anti nausea meducations they could give me. There were. They didn't suppress the nausea as well in me but a day of feeling a little queasy was worth not having to endure the bad taste again. I think I would have had a much more difficult time if I had stayed on the original anti nausea medication.
So I understand the anticipation!
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November 27 ladies - here we go!
I'm a little (OK, a lot) anxious, but hopefully my xanax and CBD oil will help.
I am probably most concerned about possible neuropathy, followed by how my side effects are going to be. Only slightly concerned about permanent hair loss. First, if it happens, it does. I would still choose this regime to give me best shot at living a long life. And then, I'll just get lots of wigs and reinvent myself every day :-)
I did order a purple wig last night - purple is my absolute fav color and I'm ready to rock a fun wig when my hair first comes out.
Every step is one step closer to being done........
Good luck today ladies! We got this!
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RunningCats - I love those hats, adorable!!! Good luck today, you sound like you are ready and will sail through with flying colors. Wishing everyone the best of luck today with little side effects.
LizzieBo and Hazel-Nut - I woke up at midnight last night with those anxiety dreams and had trouble getting back to sleep. I hope your treatment goes well today. I'll probably have trouble sleeping tonight too, my 2nd treatment is tomorrow. Good luck today!
WC3 - my oncologist told me to use tea tree oil on my nails. So far, so good, but if he voluntarily told me this, I have a feeling the worst is coming.
JennieKeaton - if you don't mind my asking, where did you get your purple wig? That sounds fun, I've been looking around online. I like your Every step is one step closer, thank you for the positive thinking. Good luck today!
Bookworm14 and Asaka - sending prayers your way today and good luck with your treatments!
I found this on another page and thought I'd share, in case you ladies would like a scarf (thank you to the original sharing lady, lcietia):
These nice folks will send you a free headcover scarf of your choosing in a pretty gift package with a personalized card.
http://www.goodwishesscarves.org/
Silk scarves readily wick away perspiration, and they dry readily. In case you should need to know, there are some simple ways to help keep even fairly slick/slippery weave scarves (such as smoothly woven silk ones) in place on one's head. A typical cotton bandana, folded into a triangle and put on (tied closely) under and its front (folded) edge folded back over the front (folded) edge of an additional (closely tied) scarf woven of smoother material, will help keep in place the smoother weave scarf worn over it. Goody hair accessories brand produces some slip-resistant elastic hairbands with silicone nubs on both the inner and outer sides -- wearing one of those under a a closely-tied-on scarf can help keep one's scarf in place.I've been having a lot of thoughts (and dreams) about my mom, who died of colon cancer in 1983. Our treatments are so much better than they were for her. Best of luck today, everyone. We are on the road to better days.
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Thank you for this community!
Flower216, I've been wearing lounge pants and a tank top with a zip front sweatshirt over it. My port is on the side of my breast/arm pit area so I need to wear something that I can pull down a bit for them to attach the line and then I can put the sweatshirt back on. The port placement seems to annoy the nurses, but it's been working fine so far. It was put in by the breast surgeon when she did my lumpectomy and she was trying to minimize scaring as well as irritation.
I'm getting weekly taxol and have had 2 infusions and my routine so far is to read or chat with my husband during the premeds, then I listen to podcasts during the actual taxol infusion since I am icing my hands (and feet) in the hope of preventing neuropathy. The nurses have helped with the cold packs - they get put on about 15 minutes before the taxol infusion starts and then I take them off when I'm done. They wrapped cold packs around my feet with medical tape but I just got some natracure socks to try for next time. They have me put my hands on a pillow and basically build a little pyramid of ice packs around them. I have a ridiculous fuzzy blanket that a friend gave me that is great for this part. I don't know if it's the stress or an actual SE, but my eyes have been pretty sensitive to light during the chemo (and the infusion center is super bright!) so I may bring an eye mask next time. I'm seconding MDoc's recommendation to have some kind of candy or mint for when they flush the port. It gives me a terrible skunk taste.
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At my treatment right now. The nurses here are great. They explained everything as they go step by step.The nurse did say it might be a good idea to get my hair cut short since it will definitely fall out...in clumps. Don’t really mind short hair, but don’t want to rush it. Currently my hair is a few inches below my shoulders. What did you all do?
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I cut mine short. Then I cut it very short the day before it fell, I could see some of it was coming out. The next day, it did fall out in clumps in the shower. I'm glad you have good nurses, Bookworm, they are very helpful. My nurse told me I had 2 weeks left of hair and she was just about exactly right.
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MissouriCatLady,
Yep my nurse said I would probably be close to bald or bald by next treatment. Everyone at this Cancer Center has been just awesome! Very glad about that!
Hope everyone is doing well and that SE’s are minimal and controlled!
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this looks like a good PDF file by NIH - Chemotherapy and You
https://www.cancer.gov/publications/patient-education/chemotherapy-and-you.pdf
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WC3 - I had that same artificially sweet, almost medicinal taste in my mouth almost as soon as they started the emend, not to mention a roaring headache, that continued right through the rest of the premeds. That taste/smell is just about the only thing that stuck with me from that day and it's nauseating to think about. I'm really hoping to try some different nausea meds cuz the ones I've been using so far are horrendous.
Bookworm - I cut my hair short prior to starting chemo and loved having the easy peasy get ready process in the morning while everything else in my life seemed so high maintenance. I let my husband buzz my hair down over the weekend. I was starting to shed quite a bit but mostly it was because of the scalp pain. I have crazy thick hair and a ton of it, I did not want to start loosing it when it was longer because the mess would have been unreal.
I got a call from my oncologist today saying we're pushing chemo this week until Friday because they want to start me on some pre meds that will hopefully keep me from having another reaction. It's like getting a sentencing reprieve, if only for two days! I'll have to do two days of heavy steroids leading up to my infusion on Friday and I'm not looking forward to it. They make me feel so gross :-/
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just came across this: https://www.breastcancer.org/tips/hair_skin_nails/...
Hair loss and your children
From the time they can reach and grab, babies like to feel their mother's hair. It's a part of the warmth and nurturing process, especially during feeding time. As they grow up, little girls often like to play hairdresser with their mother, and boys often get a kick out of pulling their mom's ponytail. So it's natural that hair loss could be an issue for some kids. One patient's children, too young to understand what breast cancer was all about, thought she had a "hair disease." All they could see was that she'd lost her hair.
Try to prepare your children for your hair loss before it occurs, reassuring them that it will grow back. Let them help you pick out a wig or scarves.
Some children may be frightened by your bald head. The more positive you and your partner can be about it, the better. But if they are still uncomfortable with your lack of hair, you may choose to keep it covered when they are around.
As a side note, I was outside and spotted our little stray cat. I had my hat on and he ran from me. I guess a hat can scare a cat. Once I called to him, he was a bit calmer, but still hesitant.
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To combat the weird taste in the mouth during chemo - use sour not sweet....
I tried peppermint, Werther's toffee and or ginger chews the last 2 times (along w holding my nose). It was awful both times.
Someone on one of the earlier boards recommended trying Lemonheads or Sour Patch Kids instead.
I haven't shaved my head yet. Maybe tonight w the 1/4 inch guard. Day 14 was when mine started coming out, but I had hair root prickles from about day 7 onward. Now it all just feels like it's dead broomstick straw. I have been wearing my soft knit hats almost non stop since maybe 11/15. I have some scarves and wraps and 2 "fancy" hats.
I don't bring much w me to chemo, my A/C infusions are about 2-3 hrs and I dozed. I tried to read last week and my eyes were sticky and dry feeling. My infusion center has some light snacks (water, ice chips, ginger ale, apple juice, pretzels, cheese nips and nilla wafers) for patients and chemo buddies. Not sure how long the paclitaxel infusions would be.
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Anyone have heartburn that started a couple hours after treatment? I don't know if this is from not eating lunch or worse, but almost as bad as pregnancy heartburn.
And oh my goodness steroids. I think I could have turned Superman and could leap y’all buildings in a single bound
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I start chemo on Nov 29th. I'm a little nervous not knowing how my body and skin will react. I have dermatitis and exzema. I am hoping I can handle it and still be able to drive myself and work since I sit at a desk.
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Omg I just got the new script for the steroids the oncologist wants me to take and she’s ordered for 40mg of dexamethasone to be taken over 12 hours. I’m going to be climbing the walls and going insane. And I have to take them at night since my chemo is first thing in the morning. Lord, I’m going to be a hot mess come Friday night. Pray for my family y’all, I’m gonna tear this house down
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Hopebry,
Best wishes in your upcoming treatment. I had my first one today. I know at the center I go to they do not allow you to drive yourself the first visit. If everything goes well the. You are allowed to drive yourself the rest of the visits. My nurse told me that everyone reacts differently, but they watch you pretty closely on first trip.
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ok thanks
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hazelnut - For my ulcerative colitis I was put on 40 mg. Ask for a sleep aid and perhaps something to calm your nerves. I didn’t know to ask at first but they were fine when I asked. Those things helped me handle the situation better. Good luck.
Bookworm - I’ve had heartburn too. Just over the counter stuff has helped.
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Well, that was 7 hours of boredom! Thankful for my IPad and WIFi. I feel ok so far, just a bit of a stomach ache, maybe it’s heartburn, Bookworm. My insurance must have not approved neurasthenic, I have 3 shots of Granix.
I’m shutting the cats out tonight. I have awful night sweats and even though I peed more today than ever ( I swear I was getting up every 45 minutes!) with all the fluids,I still want to make sure it’s not seeping out of more pores also.
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Hugs, RunningCat, kitties will understand. HopeBry, welcome. I have been working, but I take TCHP. Lemonheads are supposed to help with the taste. I'm going today for #2. Be strong, ladies, and drink drink drink.
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Does neuropathy normally occur during AC chemo or Taxol?
Also when to start taking claritin for bone pain. The day before chemo or the same day before 1st infusion?
What did any of you eat before chemo or dod you fast?
I start tomorrow so I want to be prepared.
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Hi HopeBry,
Neuropathy is one of the most common potential side effects w the Taxol (paclitaxel) chemotherapy tx of the 2 you mentioned. I had less bone pain with my 2nd A/C infusion when I started the Claritin the night of chemo tx and then for 4-5 days after chemo. The Neulasta inj will be done 27 hrs after your chemo infusion. I didn't have a problem with it on the back of my arm knocking it off or bumping it into things. Other folks preferred it on their bellies. I think you mentioned you have excema and or dermatitis? The nurses will put the cartridge on you near to the end of your infusion, you can see if you have any rxn to the adhesive. My nurses put a tegaderm patch over it so I could shower. I also have excema but didn't have a rxn to the adhesive or tegaderm. I ate a light breakfast (banana and oatmeal or muffin) before my infusions and didn't have problems w nausea or vomitting. I wanted something in my belly before getting the pre-meds and chemo. Others have had some wildly different experiences with the nausea and vomitting or just feeling queasy. There is an Oct chemo starting (maybe Sept) forum member that started fasting, Santabarbarian, for hers and felt a lot better for it afterwards. MoongirlJess is another "faster" that had improvements in side effects by using fasting pre-infusion. Moongirljess has posted on this thread giving us ladies (and gents and support teams) some encouragement and had mentioned fasting here as well. Page back thru some of our old posts and you should be able to find it. I hope this helps.
MB1
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Thanks Maddie. I believe Im getting the shot the day after.
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Hazel-Nut:
Emend was the one they switched me to. I didn't have a bad taste with that but I had the bad taste with IV Aloxi, and to a lesser extent, Zofran. The Aloxi worked very well for nausea but I just could not tolerate the bad taste so I happily accepted the IV Emend and IV Zofran. I would take a Zofran tablet at the first sign of nausea after at home in the days after the infusion, get some delayed nausea about 5 days later, and tough that day out to avoid having to take another Zofran so I didn't have to deal with the bad taste again. The Zofran tablets would alter my taste perception for about three days. I would typically sip a soda that day of nausea, which helped.
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HopeBry:
The dexamethasone spiked my blood sugar so I fasted.
I had my infusions on Thursday every 3 to 4 weeks dependinf, and initially did calorie restriction Monday and I started fasting after dinner on Monday, and I would break the fast Saturday morning. It was not a strict fast. I would eat very low call things like hearts of palm, or some broth and have some egg whites with the dexamethasone, but the fast was too long for me so I changed it to the day before, of, and after chemotherapy and my goal had shifted to maintaining a safe but low blood sugar level to keeping my blood sugar from spiking, because it would get up to 120 from the dexamethasone alone.
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MissouriCatLady - I got my purple wig from ebay. Cost me $6.55. If it lasts to wearings, that's all I need. Here's a pic of what it is. This is the stock photo - not me. I'll post one of me when it arrives :-)
Bookworm14 - My hair is longer than shoulder length. I'm cutting it into a pixie cut next Friday, and then going to buzz it when it starts to fall out. I did receive great advice not to buzz before it falls out, because then it might grow back some and when it falls out, it will be like dog/cat hair everywhere.
So my first infusion went very well. No reactions, no bad tastes, no nothing. Today has been pretty good. I'm starting to feel a bit tired, but nothing bad. Also starting to get a little dry mouth. Now, for the TMI. With pain meds, I've been constipated and taking stool softener. Doc said to keep doing until we see how I'm going to react. Well, apparently, I'm going to have the urges like diarrhea, but I'm still constipated. So, I'm going urgently, with the cramping, but also straining. Fun times.
Oh well, let's see what tomorrow's crash brings. So far, so good today.
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