Chemo starting June 2018
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rachelcarter35- I got chemo for the first time three weeks ago and when I got up yesterday there was a ton of hair on the pillow and when I washed it there was a ton on my hands. I decided to shave it yesterday because I knew I was going to have to shave it sooner or later so I might as well get it over with. My dad did the shaving, using one up from 0 too. I cried when he did it and it took me a few hours before I'd look in the mirror to see what I looked like. When I saw myself I actually started laughing! I don't think it really hit me though until I got in bed and felt stubble on the pillow instead of hair and started crying like crazy. When I got up this morning I felt a lot better about it, even been rubbing my hands though the stubble! I had to go out really quick this morning and just threw on a baseball hat. Since I had short hair to begin with you couldn't tell I didn't have any hair!
The only real side effect I've noticed so far is constipation. I started taking some laxitave and things have been coming out (lol) normal now.
I go in for chemo the second time tomorrow and I home things stay the same!
Good luck everyone!
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Now that several are having to shave your heads, would you mind sharing your favorite head coverings?
I'm looking for a wig that has easy care, and is rarely inexpensive as I am having trouble with my insurance company.
***What brands of wigs, scarves, or hats do you like?***
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good luck today Eskimo.
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I like Headscarves.com stuff. Bought them through Amazon. Very nicely done. I have a few Chemo scarves, beanies and one abbey cap. The tube-looking chemo scarves are great a treat in the 95 degree weather we are having here in NJ. I didn’t realize I have to have a color assortment at first, but now I am well stocked. I refuse to wear a wig on my long walks, so these things were godsent.0
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As for the wig, go a specialized wig place, they have to find a matching one for you. I spent 3 hours there until the owner found one wig that fit my head perfectly. It was not terribly expensive at $325. My insurance didn’t want to pay for it either. I heard that American Cancer Society gives out one wig for free, so you might want to call them.
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Eskimo - Best luck to you.. please keep us posted.. virtual hugs!
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lulabella, you hit the nail on the head with”trapped inside a really bad hangover”... day 6 was the worst! Now on day 8 and feeling good. Have been keeping a tall coffee mug of water with a straw next to sink in bathroom, when I need to get up at night to go, I replace the water right away! This has really helped so I wake up hydrated. What a positive difference in the morning! Stay strong Chemo Warriors! Thank you all fir sharing your experiences, ideas, and art
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So as I posted before I am on DDAC, going in for second treatment this Thursday. When I had my first treatment I was told I would get an hour of teaching but due to staffing I received the minimal "come to the ER for these" teaching. I'm hearing from people that there are dietary restrictions that I should be following? I have no clue what these are. Did any of you receive an restrictions, or absolute no-nos? I will be asking when I go Thursday, but wondered what anyone else was told? I know the stay away from large crowds, sick people, etc. Thanks in advance
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Staylynn, my onc says that everything that starts with the food is ok. That was a response to my question about veg and fruit juices. Was told to watch my bowel movements and adjust the diet as needed for diarrhea or constipation. Oh, and she also said not to reward myself with sweets just because I am doing chemo. Weight gain is typical for us DD gals
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InnaB2018 thank you for your response. I'm just trying to eat healthy and find what tastes good. The weight gain! YAY! I can't wait
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Hi Lulabella, I'm using Penguin as well. My second infusion of 4 TC is on Thursday, June 28th, so I'm bracing myself for that. I wash my hair very gently with diluted sulfate-free and paraben-free shampoos. I'm hoping the shedding slows down soon.
Eskimo, I hope your first infusion is off to a smooth start!
Staylynn, I'm on a different regimen than you since I'm on TC but I definitely got the "lesson" and a bunch of booklets. There was a lot of info but one thing stuck out to me about foods--avoid anything spicy or too acidic as it can cause or exacerbate mouth sores. I think I remembered this because I love spicy foods, haha. If you can, drink as much water as possible, I drink at least 3 Liters a day. It really helps with minimizing the SEs. I had really manageable side effects and I attribute a lot of it to the amount of water I was drinking to help flush out that poison out of my system. Also not sure if your regimen causes nausea, but if it does, or your prone to it, they also told me that it might be a good idea to avoid my favorite foods. If you vomit after eating your favorite food, you might develop an aversion to it. Also, no sushi, no soft cheeses, eggs must be fully cooked, pasteurized milk, etc. Basically, blast all the bacteria out of whatever you're eating. Hope that helps!
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I do NOT need a weight gain. So far, I am rarely hungry and toast is about all the non-fruits I want to eat. Have been consuming lots of cherries as this is cherry picking season in the orchards. Apples, peaches, and pears next. Eating chicken or fish at least once a day and cooked veggies. Food is not of interest right now, really, and sweets seem to make me feel worse. Did not know that “ doing the DD” was a weight gainer... had some constipation, but Miralax did the trick. Feel like I am just rambling! Water and walking are what make me feel best! Already logged 3 miles this morning
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anyone else “go flat” but need to see plastic surgeon to “fix” things? Lumps, bumps, fatty shelves.... this is not flat! Next Oncology team meeting, I am asking for plastic surgeon referral!
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Staylynn, sorry, forgot 2 things I was explicitly told not to eat: raw fish (sushi) and rare steak.
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I got all my beanies and already tied scarves from head covers.com. Here’s a pic of what I really like. It’s a halo you could wear under your scarves or your favorite hat/caps.
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I have a $14.00 hallo coming from Amazon to wear under my straw cowboy hat. I'll probable pull it back into a pony tail. I bought a $12.00 fedora from Target today and my $50 wig is by Escara bobbi boss style Delia. It's very lightweight. It's supposed to be for chemo patients because of it's lightness and coolness. I'm sure you get what you pay for with wigs but I hear many people end up not using their wigs so I just want to to see if I'll use it before I spend too much money.
I'm craving beef. I had 2 oz. of steak for lunch AND a lettuce wrapped hamburger for dinner. I made bone broth this weekend and drank a cup of it too. I'm not second guessing my cravings right now. I personally haven't had any refined sugar since my diagnosis so am not going to listen to that craving. I'm also eating large helpings of vegetables. I had asparagus with my steak.
Staylynn: stay away from raw anything. I break the rules with lettuce but wash it thoroughly. Medium steak and no sushi - yuck!
Washington48: That's such a good idea leaving the water in the bathroom All of my trips to the loo are disrupting sweethearts sleep and picking up the water when I return adds to it. I'm implimenting that tonight.
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Did anyone had surgery first and have tissue expanders right Now? I went for my second fill today. He was going to fill 200cc of saline but I said it was pretty tight after 150cc so he stopped. My first fill was 150cc as well. I was reading that most women get 100cc and have lot of pains because it’s too much. That’s why I think I could’ve gotten 200cc but I complained cuz I got scared. I wonder why I can tolerate more than most???? Also, I am getting radiation on my left breast so he is only filling my left not my right. He doesn’t want my right breast to be in the way of radiation...so I am lop sided. 😝0
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Did anyone had surgery first and have tissue expanders right Now? I went for my second fill today. He was going to fill 200cc of saline but I said it was pretty tight after 150cc so he stopped. My first fill was 150cc as well. I was reading that most women get 100cc and have lot of pains because it’s too much. That’s why I think I could’ve gotten 200cc but I complained cuz I got scared. I wonder why I can tolerate more than most???? Also, I am getting radiation on my left breast so he is only filling my left not my right. He doesn’t want my right breast to be in the way of radiation...so I am lop sided. 😝0
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Just re: the food, I was told at my patient education session that some women purposely avoid their favorite foods during tx. They'll likely taste a little funny and you might not want them for a long time afterwards. (I've finished 6 of 12 Taxols and have only recently noticed things tasting different. I'm still eating plenty, though, and know this will be temporary. For some reason the sweets still taste really good and I've given myself permission to eat pretty much what I want through the rest of tx.)
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I still eat my favorite foods with one notable sad exception: chocolate doesn’t taste great anymore. It developed an unpleasant aftertaste for me and i am extremely upset about it. Hopefully it will come back to me eventually. I am a slave of the dark master 🤪. For some reason only salty foods are appealing to me right now. And meat has lost its flavor a bit. I am craving the strangest things: quinoa, buckwheat and brown rice. Lucky for me, they are deemedto be healthy by the powers that be, so I gave myself a free rein on these three.
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Timetibebrave, I have tissue expanders now. I am already down with my fills at full C cup. No idea how many CC’s that is. The doctor told me, of course, but I have a funny relationships with numbers: I just don’t remember them. Both sides are filled, though, and I will get rads as well.
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Timetobebrave I also have TEs right now. I'm filled to 390 CCs and they feel huge to me but I am petite. Like InnaB2018, I will also be getting rads on my left side so holding my breath for the extracapsular contraction to not be so bad.
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I have TEs in and filled to 550 each. I'm done with fills and will do my exchange after chemo asap. My right expander has shifted right under my armpit so I've been wearing sports bra and ace bandage to keep it in place so that the pocket revision might not be as painful. My TEs are on top of my pectoral muscle so less painful and softer. I was able to fill 100 ccs each time. There was 150 ccs put in during the mastectomies. I was very large breasted before all of this so there was enough tissue for the prepectoral TEs. No radiation for me.
I'm actually getting a second opinion from another plastic surgeon soon because I don't have complete faith in my PS. I've found out that the expanders he used are way too big for my frame. 16cm wide and 700 ccs! I told him I wanted to be a large B /small C and I'm only 5 ft tall with 34" rib cage. Anyway this whole other aspect of my treatment has been really frustrating. The second opinion is so I can be more informed about the implant exchange and pocket revision part. I wish I'd known more about the TEs going into surgery but everything is so fast at the beginning. Now with this chemo (12 weeks) I have the time to be less passive and more proactive in this part.
The leader of my support group thinks women are filled way too fast and should demand to go 'low and slow' with cc's. Even with my prepectoral TE's I always gave myself time to recover where it was okay to get back on the pain meds for a day or two if I needed them. I personally think the TEs along with healing from double mastectomies is close to barbaric and the ideal would be to wait a year or two for reconstruction.
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I am 2 weeks out of round one tomorrow and I am feeling pretty good for a few days now. Woke up a little stuffy today, maybe a slight cold or allergies, but no big deal. I scratched my head today and noticed one long piece of hair come out and got a little nervous. Not sure if it was "the first one" or just a hair. The other day I was given free samples of Paul Mitchell Anti-thinning shampoo and conditioner, so I thought, what the heck? Maybe this will buy me a few days. My husband and I close on our first house on Friday, and I would really love to have a photo in front of it looking like myself. Of course, then I am rushing to get this thing painted before the movers come early next week. It will be such a busy weekend that I don't know when I'll get back to the wig shop to get shaved. The ladies there told me they will close down the shop to shave me in private and then adjust my wig for me, so that is nice. I attended my Look Good Feel Better yesterday, and one of the girls who had just shaved took off her wig and showed us. She looked good with peach fuzz, but it didn't make me feel any better, because I don't think I will. I chickened out of asking her how it felt when she did it.
Staylynn: Regarding food, it is anything that could potentially cause food-borne illness. I was told to stay away from blue cheeses (gongonzola, etc), undercooked meat, raw seafood. Fruits and veggies have to be washed thoroughly. She said, for example, no raspberries, because you can't wash in all the nooks and crannies. A few things I realized afterwards that I should stay away from and am hoping for the best: pre-cut fruits in drinks at restaurants (like lemon slices); any sort of buffet type foods (salad bars, salsa or sauce that are set out and you scoop your own portion); if there is a bread basket that is set on the table, I am trying to be the first one to grab bread before other hands get in there. These are hard for me cause I feel fine now, and I have to remind myself to be vigilant. I also have a little hand sanitizer in my purse and need to be using that more.
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My #1 TC was yesterday, and today I'm feeling quite chipper. I ran some errands, did some gardening and housework, and also made sure to drink 2 qts of water, although it now tastes quite a bit like drinking aluminum foil. I'm sure my good energy is because it's the 3rd (and final) day of my Dexamethazone!
Having read so much about constipation right after the infusion day, I over-medicated and had the opposite problem. Last night I had 10 prunes after dinner, and also 2 stool softeners and also 2 laxative pills. Oops. That made a night and morning of diarrhea, so then I had to take 2 Immodium. That has turned things around. What a dummy. Obviously, I totally overdid the meds for constipation out of fear of so many people mentioning that as an issue. So, I'm writing all this down--trying to journal for myself how I feel each day and what food and medication did what on which day. For Round #2, I'll be more careful!
During my infusion, I cold-capped with Paxman. I also put my hands in a bowl of ice w/ a washcloth on top, and same for feet--found a pan they fit in, put ice in the bottom and then a towel on top. I have been worried about small but real percentages of people who say that hand and feet neuropathy persisted long after chemo, and same with baldness. I'm doing the fingers and feet in ice to perhaps prevent that. Just hoping. I like to do outdoor things like hiking and skiing, and I play the piano. Losing feeling or having permanently mobility issues would be a horrible thing, so I'll suffer now, hoping that I prevent future problems. It was completely tolerable--my brain stopped complaining about cold head, fingers and toes in about 15 minutes. I wrapped myself up otherwise with warm clothes, and stayed entertained with reading and movies on my iPad.
I expect a bit of a crash as I come off the steroids, and off the long-acting anti-nausea drugs that they added into my I-V cocktail---maybe some tired days ahead, we'll see...
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@OutAndAbout, you should really get a picture with your new house. I think that would be great.
@HikingLady, I felt the most sluggish around day 3 or 4 after TC infusion last week. Keep drinking lots of water, and hopefully your appetite will come back around day 5 or 6.
I had diarrhea, but no more than 3 per day which I was told wasn't a real concern. I picked up immodium and that seemed to help a lot.
My WBC was 1.3; down from 6.0 before treatment. The doctor didn't seemed worried. She said they should start to go back up, so I'm trying to stay at home and avoid germs. Anyone else feel like you are in a cancer bubble?😉😉😉
I am so grateful for the helpful hints and encouraging words that I've found here. It makes the journey less scary!
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Hi all - TC #2 coming up on Monday. first week after #1 was a bit rocky but week #2 & #3 have been NORMAL and SE-free and no missed work - yay! If that pattern stays I'll be happy enough to have one "bad" week and two great weeks. Def will start the Sennekot S on treatment day to head off constipation. Took a Zofran in the am for 3 days after to prevent nausea - will try to reduce by a day this time. Nausea is my biggest fear at work but so far, so good. Hair is thinning but not too bad yet - I cut my long hair to a short pixie last week. It's still hard to watch it go down the sink! Love the scarves from headscarves.com on Amazon - so many options and some not-to-expensive options. Take care and stay strong!
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Lessons learned from round #1:
1) HYDRATE!! and then hydrate some more.
2) It's just hair. I did not like wearing a wig. Wore a ball cap today at work and was WAY more comfy. It's super thin, but it's still there enough to show under a cap. Good enough for me, I know everyone is different on this and my attitude about it has changed a lot.
3) Neutrophils at 200 is not fun. Neulasta and Claritin this time....here's hoping!
4) Hydrate!
5) Immodium is your friend (after the first few days)
6) There WILL be "i feel good" days after the first week or so. Probably quicker if you hydrate.
7) Fatigue sucks. Hoping hydration helps lol
Round 2 tomorrow...one step closer to round 6! We got this.
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Went in for chemo for the second time on Monday. They couldn't believe that the only real side effects I've had were hair loss and constipation. I didn't even pee red like they said could happen. I've been really tired the day after chemo, slept most of today just like I did last time I had chemo. Hopefully things stay this way!
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Thank you. It went very well. I had adverse side effects during the treatment and actually feel normal today.
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