June 2011 A/C & T Groupies Unite!

ssmith37

Just want to say hi and to let you all know I'm here with you too.  I've been reading your posts and taking notes.  Just not commenting much since I don't have anything to add.  I have my first AC tomorrow morning.  I'm scared!

justme1

FGCUfan  i called them and emailed them wish they would pick up the phone...

3bells

Hi Stephanie. I'm just checking though still I didn't have time to read all the posts, just the latest. Glad you found this topic because it seems like this is a very encouraging group and there aren't so many posts yet that it's overwhelming. You are going in the day before me. I'm sending you all my best thoughts and prayers and all the cyber {{{{hugs}}}} I can.

Let us know how it went for you when you are able. I'll be thinking of you.

Peggy

3bells

Bobbie Jo, thank you for the welcome. Went shopping today with my dh and filled up a big cart at Walmart. Still have too many things on the list to get. Think I'll send hubby off to get them tomorrow. I have my Claritin ready. So many have mentioned it. I asked the "educator" at my chemo learning session and he hadn't heard of it, but asked me to let him know how it went. They are happy to learn of anything that might help.

 Right now the most miserable thing I'm dealing with is a super sized allergy around my port site. Covers the whole right side of my chest and is creeping up my neck. It started with a tape allergy - I had it listed but changed dressings and used tape like a good little sheep. Called the center and the doc told me to use a steroid cream and benydril. Next day they called to tell me what time to be there friday and the nurse told me to stop the steroid and use neosporin. When we got home today and I saw how much it has spread, I called our pharmacist. His wife is allergic to benedryl. Many are allergic to something in Neosporin. I washed the whole area with a gentle cleanser and just put aloe vera gel on. I'm hoping the mess won't stop me from getting the first treatment over with!

 I hope you are rested up from your super woman experience and I will be continuing to pray for you. Thank you so much for letting me know you will pray for me on Friday!

Peggy

3bells

Suzanne, thanks for the response. I'm hoping my son-in-law finds his mp3 player and that an old pair of headphones I have will work. I think I'd like to listen to music; nice soothing music. My daughter plans on coming with me so I won't be listening while she is there. I am tucking some earplugs into my pack though!

I wonder if our Wal-Mart has those caps. Maybe I can get someone to pick me up a couple. The soft flannnel feeling sounds comfy.

Thanks for the encouragment about the new anti-nausea meds. My Onc said they worked differently than what I had for surgery, but they minimize everything so I'm never sure if it's for real. I will think positively and look for it to work.

I'm glad you mentioned the Claritin. I couldn't remember for sure whether to start it the night before. This time I will make a note of it. Tomorrow I need to start setting up some kind of calendar, listing when to take extra water, how much, when to eat -- if I can get it into a schedule it won't be so hard to remember everything.

 Wow! #2 already tomorrow! I will be sending prayers your way.

Peggy

Southamptonmom

We had a wonderful Walmart, and then they renovated it. I can't stand it now! The shelves are empty and they don't carry anything I need! What Walmart doesn't have a twin mattress cover or a coffee pot replacement?? Anyway, My girlfriend picked up a couple head scarfs at the local fair. My sister picked up regular scarfs and a head scarf at the local flee market, I bought 2 bandana type at the local-take advantage of cancer patients- salon, and spent an arm and a leg, and my girlfriend made me a couple, that are my favorite, from a McCall pattern. The one's my GF made are the best. They're cotton and cool. I do, however, like to go O'Naturale, as it is the least sweaty. I only have a few hairs left. Man, that was quick. I've taken everything in my cabinet for constipation this week, and can't go. I'm going to explode...LOL. Has anyone heard from singlemom???

LuvRVing

Peggy - if you've had problems with nausea in the past, ask your onc to apply a Scopolamine patch as part of your pre-meds.  It will help with the nausea and it makes you thirsty, which will make you drink more, which will help move the chemo out of your system as quickly as possible and help minimize the other side effects. 

I now drink a minimum of 96 ounces of something every single day.  It helps with dry mouth, minimizes mouth sores, and generally has kept me feeling pretty good most of the time.  Drink whatever tastes good to you, but drink!

Hugs and healing,

Michelle

3bells

Sotuhamptonmom, I wish I could pick up the art of scarf tying. Even with a book showing each step, I mess it up.

Best call and tell the treatment center about the constipation. They emphasized that I do that during my chemoeducation. I use miralax -- sometimes a double dose. Once a triple. And that was BEFORE chemo! I'm not sure what I'll need after I start this Friday. I've sometimes been tempted to use dynamite.  Also I use fleet enemas if necessary but if I let it go more than a day or two even those don't help much. Sure hope they can help you with it!

Peggy

3bells

Michelle, thanks for the suggestion. I think I'm going to call and see if someone can look at this messy allergic reaction around my port today. Maybe I can ask then. I started filling a gallon jug with water so I know how much I've had. With herbal teas added, it will hopefully be enough. Will refill when the jug is empty. This fibrofog stuff makes it hard to remember to do things, but hopefully with the jug on the kitchen counter, I'll make it a habit. Had half a jug already and it's 11 a.m. here.

Sending cyberhugs!

Pegg

juviben

Hi, all.  I had my first AC on June 29th.  I was okay for the first few days and then started feeling poorly on the 4th day.  I haven't felt terrible, just kind of like I have a bug.  My next treatment is on the 13th.  I'm so scared that I'll feel worse after this treatment.  Is that how it works?  Do you start feeling worse after every treatment?  I sure hope not.  How are all YOU doing on the AC???  Oh, and so far I still have my hair.  When does that start falling out, again?

Liz

3bells

Hi Liz. I'm not the best one to answer since I haven't started chemo yet. From what I've read it could be worse, but maybe not. Everyone is different. When I have a bad virus I lay there promising myself this will soon pass. You'll get through it. I'm sending you my prayers for few side effects.

 I've read different versions of when the hair falls out. One I remember is between 10 - 15 days.Seems it happened sooner for others.

 Wish I could remember things better and be more help. Hopefully someone will pop in who has more answers.

Peggy

Beaglesgirl

Liz I am only one example so it may be different for you. I felt worse and for a longer period pf time with each passing treatment. I just completed my 4th DD AC last week and I was down for 6 days. I hope your have it easier than that.

cider8

My favorite headcovering is from chemobeanies.com.  They slip on, no tying, lay really nice, good fabrics, feel cool (temp wise).  A few ladies were ooing and ahhing in the infusion room yesterday.  One of the nurses made me show another patient.  I'll be ordering a few more soon.  My aunt sent me a few scarves and lets just say I will lovingly pass them along.  

3rd round AC yesterday!  Went fine.  I was tired when I got home. Slept OK w/Ativan.  Woke up well rested and took my girls to a movie.  After lunch I hit the wall.  I had to go for my Neulasta shot and ran an errand while I was out.  Then I got to nap.  Someone from church brought me dinner and all is well.   

LuvRVing

Liz - I must say that my second AC was no worse than my first, maybe even slightly better because I knew what to expect so the "fear factor" was not part of the equation.  My hair started to go about day 15, hubby buzzed me on day 17 and on day 25 I still have some stubble on the top of my head. 

I wish I were into wearing hats, but nope, never liked them even in the dead of winter.  And I tried a couple scarves and both DH and I shook our heads no.  So a wig it is, or bareheaded around the house in the evening.  Today I wore my "good" wig and now I remember why we paid so much money for it...it's just so much more comfy than the other 2 that I have.  And it feels like real hair, even though it's cyber-hair.  I think the cap is a much better fit so it doesn't make marks on my scalp and give me pains behind my ears.  Comfort is everything these days!

Went to a lymphedema specialist today, got an evaluation and was fitted for a sleeve and gauntlet.  It's really important for those of you who had axillary dissections.  I'll have several weeks of therapy, mostly lymphatic massage, as my range of motion is really pretty good. 

Paula - glad that round 3 has gone well.  I have mine next Wednesday. 

Laura - hope things get easier for you.  I just moved here from Blue Springs, do you get treatment at one of the KC Cancer Center locations? 

Michelle

Beaglesgirl

Michelle, I get treated at st lukes cancer institute. They have been very good so far.

LuvRVing

Laura, my friend went to St. Luke's and loved them. 

LuvRVing

The one side effect that has been most troubling for me is cold sores - inside my mouth and on my lips.  My oncologist gave me a Rx for Valtrex, but they continued to come and go daily...until today.  Woohoo, yesterday's crop is pretty much gone and I don't feel any new ones trying to develop.  I'm sure the med needed to build up in my system, and I think it's finally there. 

I am feeling pretty good, other than a bit of fatigue when doing too much.  We are going to Hanover, NH tonight and will participate in The Prouty, a fund raiser for the Norris Cotton Cancer Center associated with Dartmouth/Hitchcock Hospital.  My adult kids are riding bikes 25-50 miles.  DH, my grandson and I will walk a 3k, which I think I can do...I guess we'll find out tomorrow!  Then we'll all meet for lunch.  It should be a fun event and is my alternative this year to the Komen Race for the Cure. 

Michelle

716bobbiejo

Michelle - Have a GREAT time with your family at The Prouty!  I am confident you can walk a 3K.  Enjoy!

Southamptonmom

Have any of you joined a support group? I went to a local BreastFriends group last night. What an amazing group of women! I found it really difficult because It's from 6:30 pm until 10pm; The herniated disc in my neck is killing me from laying down day 3-5 or 6 and it gives me a "cap" headache; I was so emotional sad for some of the women and I even woke up crying about it. There are advatages. The members who have completed their treatment can show you their new boobs. You can find out what options are out there and who the best in your area for plastics. The also integrate eastern modern medicine with western complementary alternatives. For instance, using accupuncture to relieve the SEs of chemo, yoga, massage... I'm not sure if it's for me. What would you ladies do?

LuvRVing

I don't go to an external support group.  I am fortunate to have a great family and friends group, plus an online group of diabetics who are extremely supportive, and then this forum.  That's quite enough for me.  My oncology center offers some services that I may take advantage of soon but I've got so much going on right now that I am maxed out.

Sorry about the headache, Southhamptonmom.  Sounds horrible, and I hope you get some relief quickly.

Michelle

julee_stayin_strong

Hi everyone!!!

I had a mastectomy on June 17th, so i am 3wks past and feel i am doing pretty good. my arm still hurts a little, my pit gets swollen when i walk around to much. have to stop to put my arm up.(my arm is probably 70% normal) i have been taking naps almost daily already!!! concerned about when i start chemo, if i am this tired already??? Start Chemo on Monday, July 11th i am getting scared now. Having AC+T every other wk. for 2 months, then T every wk. for 3 months, then Radiation!!! doesn't that seem like a lot??? it freaks me out because i had 9/17 lymphnodes positive. does this treatment seem REALLY aggresive to anyone??? so i am really happy that i can read what you guys are going thru, so i know what could be coming my way. I have been really strong thru this whole stupid thing, but now just the thought of having POISON running thru my vains is kinda messing with my mind. 

julee_stayin_strong

how soon after the chemo did your hair fall out?? i start chemo on monday, AC+T, everyother wk for 2 months.

julee_stayin_strong

i start chemo on monday, AC+T so i am getting more anxiety about it. only 3 days till D day!!!

kyroheal

Hey Julee

It's really not as bad as you think it will be. Day 1 especially, it's like nothing is happening. Don't worry - For me it was day 3-5 that were lousy. I fely nauseus a bit and constipation was an issue but I didnt take my stool softeners as I should. If I can give you any advice its:

1. Get on top of the side effects before they hit you - hydrate yourself, eat small frequent meal, take the stool softeners/laxatives that are prescribed, and the heartburn / antinauseas as well

2. Just know that after you do feel fuzzy for about 2-3 days (that's if you do, some people may not at all), you will get over it in the following days. I felt like I was climbing a mountain after I passed those 2-3 days and every day was getting better and better and I can honestly say I feel 100% right now and ready for my next infusion.

3. There is going to be an end to this - for me the mental aspect really got me. WHen I felt the side effects coming on, I got a bit down because I thought it was going to last for 4 whole months but it wont. You will feel good for most of it, just a few days after each cycle will be lousy and I think you can control most of the side effects

Goodluck!

YOu have lots of support here

Sandy

LuvRVing

Julee - Sandy gave you some great advice.  And no, I don't think your chemo plan is too aggressive.  It's pretty much the same as most of us, except some get the T weekly, some get it bi-weekly. 

Be sure to drink a ton of liquids the day before and the day of chemo (at least 96 ounces of whatever you can tolerate).  And then keep on drinking in the following days...it will help minimize the side effects and ensure you are well hydrated.  You want to flush the chemo out as quickly as possible.  And if you are getting the Neulasta shot, take Claritin the day of chemo treatment, and for at least two days afterwards.  It will minimize or eliminate any bone pain from the effects of the Neulasta. 

We'll all be here for you!

Hugs,

Michelle

cider8

Round 3 AC, day 3:  down for the count!  I slept almost all day.  Here's hoping I can sleep all night, too.

kks_rd

Hi all, hope you are doing OK today with minimal SEs.

Just wanted to report a minor setback having to do with my neupogen shots.  I has my last chemo on Wednesday and should have started them today... but the Rx company cannot deliver them until Tuesday!  Jeez!  I bit the bullet and called the on-call doc to see what I should do next.  not sure how critical the timing is on stuff like that you know?  He said that if my blood counts hadn't been OK last time, I would have had to go to the ED this weekend to get at least one shot, maybe two (yikes)!  But since I was in decent shape last time, he suggested I come to the Cancer Center first thing Monday morning to get one.

Lesson learned? Lots of advance time is needed on stuff like Rx refills, especially during a holiday week!

I worked 13 hours yesterday and didn't get a nap the day before (thank you decadron).  I am prepared to do as much resting this weekend as I am able to.. of course the lawn still needs to be mowed, groceries need to purchased, laundry done, etc.  Stuff like that doesn't stop needing to be done just because I happen to have cancer!  To say nothing of the stuff I might actually WANT to do on a nice weekend like this.  (Thanks for letting me whine a bit.)

Other than being tired, my biggest complaint is the slick mouth feeling and some minor head-achiness.

Sending big hugs to all y'all out there.

3bells

Hi Kat. I'm glad your blood counts were OK last time so it wasn't as bad as it could have been with the Rx delay. Holiday weekends are the worst when you need medical attention.

I sure hope you can ignore some things, like the lawn, and get some rest. Most of what you need to do is necessary. Is there anyone who can help with running errands maybe?

Cyber Hugs from Peggy

3bells

Stephanie, I hope your first AC was a lot better than you feared.

Suzanne, you were on treatment 2 yesterday, I think. 

Thinking of you both and everyone else having the infusions. Let us know how you are doing when you have a chance.

Thanks to a tape allergy around the port area, spreading all over the left side of my chest and getting infected, I'm on an antibiotic. Went in for treatment one, though I really didn't think they would do it with the mess, and they postponed it until next Monday.

Got to try a "dry run" anyhow, and see the setup for infusions. No one looked like they were in acute agony. After we went to the shop in the center and bought a hat to be ready for hair loss. I'm not even going to try the wig for sure. Also got a couple of free hats sewed by people out there who care and donate them.

I need to send out a couple of update emails to friends and then chill out for awhile.

Peggy

ssmith37

Hi all.  I was so worried about nothing.  I really enjoyed my little "margarita" though.  Maybe they'll give me another one next time if I play it up, lol!  But seriously, I was so relieved that nothing bad happened.  I was very anxious!  I am having nausea and bad, bad heartburn!  Had some bone pain this morning from the Neulasta shot, but that didn't last long and wasn't too bad - at least so far.  It sounds like you all are doing pretty well, and I'm thankful for that.  Kat, I'm glad your blood counts were good, but I'm so sorry for all of the work you have to do!  I sincerely hope you do have someone helping you!  Sandy, I absolutely love your positivity!  I'm so glad you are having minimal side effects.  To all of you, I'm reading your posts, just not much of a talker.  Just know I'm here for you and I appreciate this group so, so much!