January 2016 Chemo!

buttaflydiva

had 1st ac treatment Friday, felt kinda descent Saturday but yesterday was the worse day of my life lol. thank goodness today is getting better. I hate nausea, I took all my meds, ate small bland meals, but still had a rough day. I guess each day after treatment gets better each day. I hope and pray we all are blessed with more good days than bad through this process.

LovesToFly

haha!!!

Myraknits

ok! I got my schedule so technically I'm a starting in February person. Port gets placed next Wednesday and then CTHP begins on Feb 9th. I'm starting to get my survival kit together. There's so much valuable info from you all on what I might expect so Claritan and Imodium are at the ready. I have a zillion questions for the dr. But I'm wondering if I'll need to avoid fresh fruits and vegetables as I've heard some recommend. Also I'll be on Neulasta so I'm assuming that will help prevent infections...do I needed wear a face mask when I'm in public? Is plane travel out till this is all over? Thanks in advance. And sending good healing vibes out to all

zinny

myraknits - There seems to be a lot of variability in what people are told!! My centre has specifically said that I do not need to avoid crowds, and has given me no food no-no's ( though sushi, raw egg, and unpasteurized cheese are givens, I guess.) The neulasta does keep your counts up, so you are not as immunocompromised. AS my MO says, you are far more likely to get sick from the bugs already in your body that those you "catch." That being said, no one wants to be doing all of this with a cold or flu, so stay away from sick people and wash your hands a lot.

However, you are on a different regime than I am, so it may be different.

it is important to have an accurate thermometer in case of fever, because a fever means action.

Off to nap:)

Cathytoo

zinny...my MO said to pay attention to my body, use common sense and good hand hygiene. I have gone to the movies at a time when the theatre was almost empty at 11am. Who goes then??? Me‼️ I do have to fly the last day of my second infusion. I'm hesitant, but if my WBC is OK, I will fly with a mask. Good luck to you

MissBee123

Myraknits, my oncologist has given me the go-ahead for everything, but I think it's really important to listen to your own doctor. You never know if based on your stats, labwork, diagnostics, and personal history if there is reason that is specifically recommended for you.

I have not needed to wear a mask per my doctor's orders, but this first round due to insurance I couldn't get the Neulasta shot, so I wore it whenever I was in an enclosed crowded space (gym, subway, etc). I am set to fly a week from Wednesday and I will be wearing a mask on the flight, but only as a precaution, not a mandate. My doctor knows about my trip and has cleared me to go. We are going to Colorado to set up our new house! Move date is set for March 1st, so excited!

Paulinek

Congrats on the house MissBee! I love reading how so many of you are doing things like skiing, skating, house buying! We have to find our happy moments on this crazy ride

Good luck to everyone with infusions this week. I am back at it on Friday for round 2.

I was wondering if anyone has any tips/advice for scalp care? My hair is buzzed all the way down, but I have bare patches all over. Do you use shampoo or soap? Lotion in this cold weather or coconut oil? Thanks in advance!

jensgotthis

myraknits, other than sushi, undercooked eggs and meets, and raw cheeses, I'm clear to eat everything too. They prefer that I don't eat salads out or from salad bars, because these items might not be washed well enough. I've seen suggestions to peel all fruits and veggies that I'm going to eat, but I just wash them really well as the peel often has so much vitamin and fiber. I have been encouraged to eat lots of cabbage and garlic, and I feel better eating lots of veggie soup with chicken or sausage.

jensgotthis

A couple of tips I've picked up from opera singers to help keep from getting sick while flying include bringing antibacterial wipes and wiping down your seat belt, arm rests and both sides of the tray at your seat; coat the inside of your nose with vaseline (and wipe it out when you get off the plane); and bring all your own beverages and food. I've read a couple of other chemo boards for people a couple of months ahead of us and I see lots of travel happening! Go for it ladies.

LovesToFly

Paulinek i'm using conditioner to wash my hair, no shampoo because I figure shampoo was harsh, and conditioner washes hair while being gentle on the scalp. Have no idea what I'm supposed to do once my hair is all gone, but I've got a lot of touches on the side! I got a new wig with my coworker at lunch today! Wigs are kind of addictive

LovesToFly

by the way yesterday I dried my hair with a towel, then my body. Bad idea. I lookedlike Chewbacca and had to get back in the shower to wash all the hair off my body!!

jensgotthis

Jill - I love this one! All of yours have looked good but this one is super cool. I picked mine up today. I'll try to get a photo tomorrow. The color is a little more ginger brown than I usually do but I like it overall. And it's very comfortable, which I was surprised about.

LovesToFly

thanks!! I love it. My other wigs were from a Jewish wig store...this time I went to one that seems to cater mostly to black women. Much funkier styles!!

My friend gave me her mother's Racquel Welch wig. I can't wear it, it makes me look like my mother! But I have to say, it is so comfortable, I may want to look for one of those.

Shiningstars

hi all,

I'm on cycle 1 day 4. Day of infusion was uneventful. Day 2 and day 3 was fine too except I couldn't sleep last night. I also have pretty bad constipation. I haven't tried any meds. Just drinking lots of water, fiber and prunes. I no longer need to take medication so I hope I get some sleep tonight

LovesToFly

good luck shiningstars. I definitely started sleeping better once I was done with the steroids ( when I was on them I took one Tylenol p.m. every night with the pharmacists approval, I really can't cope with not sleeping it triggers anxiety), however I was also a bit sleepy during the day. Hydrating and getting outside for walks definitely helped. Please don't be afraid to take a stool softener if you need to, constipation can get really bad. Hopefully you will loosen up soon!

Ready for tomorrow. Cycle 2 here I come!!

Delight55

Hello everyone, I didn't realize how long I had checked out until I noticed I had 3 pages of posts to read to catch up! I'm happy to say in spite of more SE's joining the party I am feeling more like my old self. I do have a lovely case of thrush and I am breaking out on my face, head and lower back. I had my head shaved on Saturday and I must say the anticipation was much worse than actually having it done. It's a relief not worrying and wondering if my hair was going to start coming out in clumps. The SE's I have now are more annoying than debilitating and I'm grateful for that. To the newbies who have joined recently, sorry you have to be here but you won't find a nicer group of people for support and advice

Cathytoo

LovesToFly..love love the new wig. You look fabulous. Wigs are definitely addictive. I've bought four already plus bangs and a halo

zinny

Great Wig, LovestoFly, and good luck with your next cycle!

The LGFB class talked a lot about moisturizing your scalp - washing it with something gentle, and then using a body lotion like Aveeno…

MB12

Cathytoo - I am flying for work over the next week and bring antibacterial wipes w me. I have for years. I wiped the window, window shade, around the window, in the tray, outside of tray, both armrests, the air nozzle and sometimes the person next to me. Haha! Needless, to say I don't get sick on planes. Bring a hand sanitizer, also.

This time I'm bringing masks in case someone is coughing in front of me like my last flight. I seriously was having a freak out bc he would cough in his hand and touch things. Disgusting. I will wear masks on every flight after chemo starts. 😷

Hope y'all push through chemo fast and furious! Keeping you in my thoughts!

Also, everybody looks great w their wigs!! In the words of Lil Wayne:#longhairdontcare #shorthairdontcare #nohairdontcare

LoveMyVizsla

I've always used wet wipes on the plane too. Frankly, I'm more concerned about people behind me coughing and sneezing than those in front of me.

MissBee123

Ugh. Round 2 was this morning and I am already nauseous. Last time I began feeling nauseous only 3 hours after the infusion ended. I told my MO and he said I was maxed out on dosage for aprepitant and palonosentron, but that he could up the decadron to its max at 20mgs. That bought me a whole extra 4 hours of no nausea and now I'm up at 12:15 a.m. thinking disembowelment might be preferable.

I can't take any of my prescription nausea meds since I had so many infused today, so here I sit in the middle of the night hoping some plain toast and ginger tea will help.

Has any of us mentioned yet that chemo sucks? I just want to make sure that info is out there. Very valuable.

Mena4911

O Missbee so sorry you feel so lowsy! Do you have the phenergan gel ? It really helps and can be used between the the pills you are taking for nausea. Need to be ordered thru a compounding pharmacy.

I had first chemo last tuesday and had no problems with nausea, Had Aloxi in premed. Zofran and compazine pills and the phenergan gel. But, I have had horrible severe constipation, no bm since general anesthesia surgery for port on friday 16th.

Woke sunday morning to red raised hives to neck and upper chest also to every spot on my stomach and back that had an electrode placed during all over my testing this past week before and after chemo on tuesday. you can see the perfect outlines of circles and squares. Called on call doc as per the instruction list of reasons to call; told was most likely from taxotere, take benedryl and hydrocortisone cream. Done. no worse no better.

Constipation horrible, tried mom, miralax, apple juice, hot tea,water water water, dulcolax suppository, walked tread mill, walked in yard, belly swelled beyond painful. only ate small 1/4 cup oatmeal sunday morning and that is it. Cant force any food down. vomited last night with streaks of blood, blowing blood from nose. finally just go to bed feeling awful. did not take any nausea meds all day sunday or sunday night. Refuse to take anything to slow down the little bit of movement i feel in abdomen. refuse to call on call doc on sunday night.

This morning called clinic during office hours ,triage nurse moved my appointment from tuesday to monday said i had done all i could do at home and need to come in. PA tells me #1 the rash is nothing. and to take two bottles of mag citrate of constipation. I can not get down more than a sip of water at a time, belly distended nothing will go down. well too bad you just have to do it. Fine whatever you say i dont care. My sweet sister spoke up and told her again she cant get anything down, she cannot eat or drink! finally orders a linzess. ok fine. what do you want for mouth? she says you can have this triple mix stuff or use salt and baking soda. By this time i am very upset, sick and crying from having to beg for help from somebody who is just pissed off that i am there on the wrong day and making her Monday more busy! So i take the triple mix , pay for the crap that has no directions other than "use as directed" ,,, hmmmm was NOT told how to use it AND has no ingredients listed anywhere. WTH is this stuff, it is just for sore mouth. I have white coated tongue and roof of mouth and I know it is thrush and i need nystatin quick . ;for the nothing hives all over neck, chest and back i got iv steriods which is only going to make the thrush worse. did get 500 cc bolus of fluids which i am sure i needed. Was also told the nausea meds would not be causing constipation! WTH! Constipation is side effect for every single one! Maybe had she actually looked IN my mouth ?

Whatever, so upset over this awful day. I am calling my pcp tomorrow and begging for an appointment!

linzess actually did cause a small bm then just water diarrhea, belly still full, sore and cant eat. how many days is ok to go with no food? "Cant eat " is on the list to call. But, i am NOT going there! WOW I just went on a rant! So sorry, this is all so scary and frustrating! Yea can't sleep AGAIN because of steriods!

Honesty2021

hi Emily I had my first A/c yesterday not to bad so far. I go to my neulasta shot this morning. How is it going so far?

LovesToFly

zinny thanks for the lgfb info, I need to go to one of those.

Missbee sorry you feel so rotten, I hope you start feeling better soon

Honesty ask about taking Claritin with the Neulasta. A side effect of Neulasta can be bone pain, taking Claritin with that seems to help. I did that last cycle and didn't have any serious bone pain. I will again.

Paulinek

thank you zinny! I tried a little lotion on my bare spots last night and it helped with the itching.

Jill- I love the new wig! You can pull off so many different styles, which I'm sure makes it all a little more fun. I will try conditioner on my fuzz today. I hope your infusion goes well today.

MissBee and Mena I hope things get better soon

Myraknits

oh no! I was away this weekend and picked up a bug. My throat is killing me! Normally I would wait it out but with chemo starting on Feb 9 im thinking I should head to urgent care for a swab. Any thoughts? TIA

Jinx27

Happy Tuesday ladies,

I hope everyone is okay. Best wishes to anyone having a port placed, as mentioned, the procedure itself is not simple and complications do exist. Also too anyone starting chemo this week, stay positive and listen to your body.

@MissBee- I hope you feel better soon enough for your trip. Best wishes with your house!

As for me, my hair shedding has maximized soo much that this morning I cut the rest of it down to peach fuzz. It feels soo much better. I was experiencing my scalp tingling and tightness like my head was on fire or something.

Its all gone now and I love it. I should have done it a while ago.

LovesToFly

yes, my head is looking pretty bad. The top still has a bit of buzz, but the sides are completely frozen. I just shaved my sideburns because they look so funny and stringy hanging out of my hats etc. I think I'm going to find somebody with clippers and get it shaved right down. It's driving me crazy. I am showering in a minute and I'm going to give it a good scrub with a washcloth

LifeAloft

Hi all,

I had my first infusion yesterday morning, so far, so good, but I have this constant thought of "ok, when is it all going to start". I have the Neulasta self injector thingy on my arm, it's set to go off later today, already taking my Claritin.  As I'm just starting this, all I can think is this such a strange strange ride. I've had more meds in my body in the past 24 hours than I have in the past year. 

Hope everyone is feeling better today, sending hugs. 

songbird72

Good morning all. I'm on my way to infusion #2. I'm praying SE'S are better this time and certainly not worse.

I'm sorry some of you are struggling with them today.

My hair is starting to shed more than usual in the shower and when I gel it. Ugh. I'm. Dreading that because I love my hair!