Has anyone started a Dec 2011 group?

stephanie33

Mardibra

I couldn't drink coffee this morning either which bummed me out big time cuz i LOVE my coffee in the morning. I have found that peppermint candy canes are really helping along with the 2 meds i am alternating.

Mardibra

Got my shot and met with the nutritionist. Nutritionist gave me a bunch of food tips which will be helpful. As a caution, I asked the nurse for an extra pack of Emend. No go! $800 bucks! I have come to realize that insurance companies rule the world.



Have felt pretty good. Gator - sorry your tummy is bothering you. I have zofran but I also have compazine. Maybe you can ask your doc if if the compazine is an option ? I took the Claritan earlier today and had the shot at 2:00. No pain (yet). They prescribed Vicodin if I need it. However I hate pain meds.



Stephanie - I'm going to miss my coffee big time. It comes in a close second to my hair.

darlam

Wow...2 pages and I am way behind! Welcome to all our new ladies. Sorry that you have to be here, but we are glad of your company and sharing. Keny, I am also a "control freak" who ticked off my surgeon just a bit by reading my own chart before she got to the room. She got over it, and figured out it's how I roll. I just couldn't wait one more minute to know what my test results said. Hey, they're yours, right??? Hoping for positive results on pending tests for for Kelloggs and Rachel. Gina, my vote is leave it uncovered. Any open area heals better with air. 

Tammie, hoping you are starting to feel better, and hoping for Rachel, Susan, and Markat, that the ports are becoming less bothersome. Rachel; hoping too that you'll be able to make beautiful music soon. Keeping the recreational things that bring us beauty and joy are very important. I have a midwife colleague who had chemo last year. She is a harp player who was worried also, but was able to play after a short time. 

Evy, I read from one of the other threads (forgot which one) about nutritional supplements to prevent neuropathy. I am taking 100 mg of Vit B6 , 30 mg of L-Glutamine, and 500 mg of L-Acetyl Carnatine daily. Got them all at the natural foods store. Don't know yet obviously if it works, but doing everything and anything I know how to head off any problems I can even try to control. 

Ladies who are wig shopping...Check with your local Americian Cancer Society branch. They donate wigs made of human hair from Locks of Love to local hair salons who will volunteer to distribute, fit, cut, and color them for free. They can tell you who in your area participates. I found out because my daughter is a cosmetologist. Using cold caps hoping not to lose hair, but wig is ready if I need it. Also check out the Look Good, Feel Better sessions on makeup application, drawing on eyebrows, handling skin and nail changes, scarf tying, etc. Find out through ACS or your onc center. Free session, nice makeup freebies, and good tips, or so I hear. Going on Monday. There are also free websites that donate hats and turbans, and a program where a "chemo angel" will send little notes and gifts of encouragement as you go through chemo. I will look this stuff up again and post later if anyone is interested.Got my breast prosthesis (foobie) today and bought a bathing suit half price while I was at it. Merry Christmas to me! Reconstruction has been delayed till after chemo per PS recommendation. 

Sunflower, thanks for the encouragement. Can't wait to be on the other side of this.Tammie, like you, I can't keep up with who is doing what without reading back and taking notes. I think Mardibra, Gator, and myself started yesterday, with several more due to start next week.

My chemo day was very long. Checked in at 8:15. Wait. Called back for BP and weight check. Wait. Called back to see MO. Wait. Saw MO. Wait. Called back for infusion at 10:30. Admission checklist. Started pre-meds at 11:00. Got Benadryl, Aloxi, Emend, and Decadron, followed by Taxotere, Carboplatin, and Herceptin. Didn't finish till 4 pm. This is on a 3 wk schedule. Accessing the port stung a bit, but I was glad to have it. Much better than the recent digging for gold of veins during the two previous surgeries. All in all, it was pretty much what I expected EXCEPT for some weird reaction to what we think was the Decadron. Got sudden, intense, crushing, OMG, don't touch me, don't make me move, horrifying back pain. Now I had natural childbirth, so I am no wimp, but this was like the worst contraction ever that stayed at its' peak without stopping for like 10-15 minutes without stopping. The nursing staff acted like they had never seen anything like it, and wanted to give me Ativan for my "anxiety." Um. Fail. The MO did stroll back a bit later and said that this is rare, but possible. Question is, was it an initial reaction thing, or something that's going to happen every time. Not looking forward to finding out next time, let me tell you. Was NOT prepared for that one. 

Had Neulasta this morning. Took Claritin. Very tired and not much appetite today, but no other problems thus far. Hoping there won't be, but I understand it's a little too soon to call at this point. Well, that's my story and I'm sticking to it. Will post some of those freebie links in a bit. Mardibra and Gator, keep me posted on your weekend, and deep breaths for those of you still waiting. It isn't as scary as you anticipate for the most part, and apparently my scary event was a fluke thing. Of course I'D do it, if it's remotely possible! One down, anyway!

darlam

Here's a short list of freebie services for those in chemo.

I'm sure there are others, and of course, local resources are in addition. These are a few I found. Maybe others can add to the list.

Chemo angels. Encouragement by mail. chemoangels.net

The Lydia Project. Also mail encouragement and gift bag for shipping of $10.00. thelydiaproject.org

Crickett's answer for cancer-matches you with providers in your community willing to give free or discounted pampering such as massages, facials, wigs, and mastectomy supplies. crickettsanswer.startlogic.com

Cleaning for a reason-professional maid service housecleaning free once a month. Maximun 4 months. Again, matches with local volunteers so not available everywhere but exists in all 50 states and Canada. cleaningforareason.org

Free scarves/hats/wraps-heavenlyhats.com

Gator65

Mardibra - I have compazine as well. I hear what you are saying about the Emend. What happened to me is that when I turned in my script for Zolfran on Wednesday night, I was unaware that my insurance company requires my MO to fill out a 2 part authorization form for a) use and b) quantity. The pharmacist gave me 4 pills to get through yesterday and today of which I am very grateful. 

Here is the kicker, I get my neulasta shot at 4:15pm and they tell me everything has been straightened out about the Zolfran. I call my pharmacy, no it hasn't.  The really nice pharmacist advances 12 pills to get through the weekend.  What a blessing!

Thought that getting the neulasta shot in the stomach was interesting. They also told me today to check and see if my insurance company will let me give it to myself at home since I drive almost an hour each way and I was there for like 10 minutes.

I still feel like crap, but I can manage. gatorade and crackers, dinner of champions.......

Honestly,  I was scared out of mind yesterday. My BP was like 160/90 because I was so scared. I kinda feel ridiculous now. It was nowhere as bad as I thought is was going to be. I had visions of it burning like lye when it goes in. It was really not the big deal that my mind made it out to be. Like darlam says, 1 down and 11 to go!

Talk to you soon ladies! 

rachelvk

Quick question on ports - the paper they sent home with me said "No strenuous exercise of physical activity involving the arm in which the port was placed. No driving for 24 hours."

So....mine is in my chest, not my arm. I've tried not to lift really heavy things, but have a few bags (like today's groceries) that were a bit heavy. How careful do I have to be, and for how long? I'll be taking the bandages off a little later to check for any problems. I still get a few twinges and just keep worrying that if I squirm the wrong way, like trying to get a coat on, it might bother it. I'm usually not like this, but it's pretty daunting.

Any help?

Darlam - Thanks for all that great info. Haircut tomorrow; wig appointment at the local breast cancer resource center (through the YWCA) on Thursday. Has anyone every tried the 'hair halos'? I was thinking of trying to make something like that myself - just attaching locks of my hair onto hats or scarves. My bangs are pretty distinct.

Mardibra - Sorry about the Emend. I hope there are some other things that can help. Yeah, insurance companies are a pain.

Stephanie - No coffee! Ouch. But candy canes sound like an interesting remedy - is that to help with the bad taste?

Gator - That sounds so stressful. Don't be embarrassed - this is scary stuff. As you said, you've got one down, and you'll be a pro next time.

Have a good weekend everyone. 

bc50

rachelvk,

Mine is also in my chest.  It was put in at the time I had my BMX.  I didn't get any specific instructions for it when leaving the hospital.  Probably because I couldn't do anything from the BMX anyway. 

Mine was somewhat sore the first few days.  My throat would hurt sometimes when I swallowed and my chest would hurt when turning certains ways.  I still would lift with my left arm.  Not the right since that is where the lymph nodes were removed.  After about a week, it seemed just kind of weird feeling.  It's been four weeks and I don't really notice it at all now.

rachelvk

bc50 - Thanks. I feel like such a wimp this time around! I sailed through my bmx - but I guess I expected the aches and restrictions with that.

deniseday

I finished AC/T in September and am now recovering from BMX with immediate one step reconstruction.  My Oncologist has recommended Carbo and Gemzar as a precautionary chemo therapy because although they got all the cancer with clean margins, the cancer was still active.  Can anyone tell me anything about the C & G regimen? 

Thank you, Denise

Kelloggs

Rachel - I must be a wimp too.  The lumpectomy, node removal and re-excision were nothing compared to the pain I had with the port!  I think they had some trouble locating a vein and had to dig around.  Anyway, they sew it to the muscle and that is where the pain came from.  Mine was put in 11/11 and it doesn't bother me anymore, but it hurt for a while.  I start chemo on 12/8...still scared.  Christmas is not the time for this.  I have 2 daughters, one is 24 and the other is 18.  The youngest is at college but will be home for a month soon.  I don't want to feel crappy...want to enjoy her while she is here.  Oh well......I guess it's a small price to pay. 

kenyohunt1

Got my pet/CT scan today. Negative for any Mets. Did show a kidney stone and a hiatal hernia. Ironic how happy I was to have StageII grade 3 cancer. After reading the report I felt completely drained. I start chemo next week and am still a little scared about how everything is going to go. I am consumed by this cancer and everything that comes with it. I took a Xanax to try and relax and possible get some sleep, something I have not been getting. Just when I got into that good sleep, my 11yr old wakes me up to tell me she started her period and had a Charlie horse in her leg. It was then that I now realize that I can't just be consumed with this cancer recuurence, I still have 3 little girls that need me to be mom.



Even though I am happy about the pet/CT scan not showing Mets My emotions are all over the place. I still feel this ticking time bomb in me and I just want it out. I am telling myself the pet/CT scan was a few days ago how do I know everything is still the same. Anyone else feel like thinking about cancer is driving them batty. How do I get past the fear? Too many thoughts and emotions at one time.

seacretgardn

I have to say I too was surprised at the discomfort of the port placement (Nov 23). Mostly fearful too I think of dislodging something. I've since come to know extremely active women who have had theirs quite a while, no problems so it's a matter of getting used to. I'm slowly increasing my range of motion, still nervous about my incision reopening too. Re-scheduled to begin AC on Dec. 8.



Kelly I have 2 daughters also, the youngest coming home for break and feel like I'm Ruining everyone's holiday but they are grown and I am hoping will accept that this year is going to be a bit different. My youngest is also afraid to admit she's afraid.



Breaks my heart when I hear about women with young children.



Kenyon I am very new here but these amazing ladies with their willingness to share experiences knowledge and emotions has been helping tremendously with just getting through each day. Since my bmx on Nov. 1st my anxiety and racing thoughts had left me sleeping so little that I couldn't imagine having the strength to begin chemo. So many decisions dr appointments range of emotion.



Reading of others experiences, of the ladies who shared their first chemo experience this week when I go next Thursday will arm me with strength that mine will be doable as well.



Sending hugs and prayer to all.



Laura

Gator65

For the ones that young children my heart truly breaks for you.  I cannot imagine doing this and having young children. My girls are about the same age as Kelloggs, they are 23 and 18. The 18 yr old is in college on a full athletic scholarship playing softball. Thank god she has zero time to sit and worry. LOL Her sister does it for her,

Well, this is day 3 and I feel blech. I still have nausea, but it is not too bad. Other than that, I am okay. The thought of food makes me want to hurl, though. I think that my chemo weight loss plan may have some merit, hahahahaha 

Mardibra

Keny - I've had all the same thoughts...I want it gone! All my pre lumpectomy and axillary node dissection tests showed one thing and the surgery turned up a different story. So, I've come to realize that this is not an exact science. If I get even the slightest ache or pain anywhere I'm thinking it's more cancer. I now play a game with one of my brothers. Calledhim yesterday and said I have an ache in my right calf so I must have calf cancer! Turning into a silly game seems to take the pressure off.



As far as my port, I really didn't have any problems. It was uncomfortable for a few days but by the time a week went by I barely noticed it was there. Sleeping on my stomach and everything!



For all you ladies facing your first chemo this week, try not to stress too much. The anticipation was far worse than the actual chemo. Had my first chemo on Thursday and I feel great. Day one I had a weird feeling. Day two I had no appetite and horrible mouth taste. Now that I'm beginning day three I think it's going to be a good one. I'm drinking coffee and enjoying it!



Happy healthy thoughts to all of you!



Christine

Mardibra

Anyone else planning on how/when to buzz your hair? I'm love my hair and don't want to see it go but it will so i have decided to make it a party. My Hair Be Gone party is tentatively scheduled for 12/16. I hope the hair lasts that long. I plan on drinking lots of wine so it better taste good!

deniseday

Mardibra, I too had chemo before my BMX. My hair started falling out about day 17 and it really hurt at the scalp.  My husband shaved it for me.  It was definitely a bad day.  I finished my chemo Sept 16 and I have a pretty good coverage of hair.  I still won't go topless, but I'm wearing "cute" little hats.

Denise

rachelvk

Mardibra - I'm still debating that, too. In 2 hours, I go to have my hair cut pixie-short (or thereabouts. My Dad's stupid comment of the month: 'Oh, don't get it cut too short. You still want to look feminine...' Yeah, and bald is????) I figure as soon as it starts definitively falling out, I'll get it shaved. That way I can hold out for hope. I do know a few women whose hair only thinned. Mine is really, really thick, so who knows?

I actually broke down last night over my hair. My boyfriend a few days ago had said he should get a picture of me, so I went into the bathroom to fix my hair (I had it pulled back into a single barette, one of the only 'styles' I ever bother with), and I just sobbed. He passed by and saw me and gave me a good pep talk. By then my eyes were too red, so I figured I have enough pictures of my hair pre-BC.

Kenyohunt - A sigh of relief on the PET scan. And no, the doubts don't go away. That's one of the ugly things about BC. But things seem to be moving quickly for you. I had surgery first, and spent 3 months knowing it was inside me, without the benefit of whacking it with chemo. NOT fun. But we just finding the reasons to get up each morning and say we're not going to let it get us down. And you've got three wonderful reasons to tuck those fears away in the back of your mind and enjoy your girls. You've got a young woman there, now!

Laura - Thanks for the reassurance about the port. As for your holiday, I hope you and your family can find a way to enjoy it that makes it festive for everyone but leaves room for you to be open about your situation and not feel like you have to ignore it or hide it. Families and friends can be unkind and unthoughtful, whether they mean to or not. But this is one of those times that everyone hopefully learns that sometimes you give, and sometimes you take, and right now, you may need to do a litte more taking. I'm sure you've done your share of giving in the past.

Gator - Keep wishing those pounds away! Though I wish you a healthy appetite in the very near future. 

Mardibra

Denise - I too expect it to be a bad day. So I'm throwing a party! I'll do anything to have fun on that day. I don't want to be crying over my blonde hair all over the floor. I'm sure a few tears will drop but we shall see.

seacretgardn

Thank you Rachel. Yes this Christmas will definitely take on new meaning. We will scale down, and be grateful for what is.



It is difficult to have new limitations, I am single, older daughter lives upstairs and she's been wonderful, younger daughter away at college. It's hard to let go of the things I would normally have kept up with. The leaves? They'll be waiting for me in the spring, along with the million other projects that loom.



I was dreading the winter, not being able to shovel (BMX w TEs) having to get to appts, etc, but have to hope for the best about that too.



As for my hair....I was concerned and self-conscious that my fine blonde hair was getting thinner and finer as I approached menopause. Even went to see a specialist in NY.


< />Boy am I glad I didn't refinance my house to pay for hair transplants! And I've gotten the first grey hairs just since my surgery on Nov. 1.



Reading others posts I'm not sure I'm going to keep the darn wig on. The "cranial prosthesis" store had a ball cap with hair, but it's a little chilly here in NJ for that.



Anyone see other types of hats with hair or bangs?



I'm sorry for your emotional day Rachel.

but happy you have a supportive boyfriend.

Both my daughters offered to shave their heads. I was very touched.

Blessings to all today xoxo -Laura

markat

Well wig shopping didn't go exactly how I expected. They sat me down and started measuring my head then the lady went to the back room to talk to her boss. When she came back she told me that my head was larger than average so I would have to order a custom wig. I totally broke down. Not only do I have breast cancer...but also a huge head! Thank goodness my sister in laws were with me. I ordered one. Its cute.



Can you ladies explain the claratin for the neulasta for me? Or point me in the right direction to look it up?



If I lose my taste for coffee it will be horrible.



My heart breaks for all of us. At least with my little girls they don't know how scary cancer is yet. Those of you with teenagers and adult children have the burden of trying to ease their worries while going through this.

Mardibra

Markat - no one seems to know why Clartan helps with the bone pain associated with the Nulasta shot. My MO had never heard of it. The goal of the Nulasta shot is to increase your white cell count. White cells are produced in the bone marrow. So because your bone marrow is working overtime it can cause pain. Everyone seems to use it but only some find relief. I have taken one each day since my shot and I don't have any pain but I do have a little weakness in my knees when climbing stairs. No pain because of Claritan? Who knows but MO said it can't hurt.

tammie

Mar my ONC nurse said to take claritin the day before, the day of then the day after..I had my nuelasta shot on Thurs..Have had awful headache and lots of pain the last couple days but bein told thats common after nuelasta if you have bone mets..I'm not sure if its from nuelasta or just the chemo that im gettin all these aches but being hopeful it lets up soon... I have to say after a week and a half since AC my tummy finally feels a bit better ive had no nausea or heartburn today FINALLY!! OO the fun we endure together ladies LOL...Much love and ty all for being here through this with me..Tammie

rachelvk

Laura - tlcdirect.org has a number of 'hair halos' and fake bangs - including one set that's shoulder-length. You can wear it under a hat of your own. Look under "hair for hats."

Markat - You'd think they'd have a better variety! I might have the opposite problem - too small. but that might be easier to fix. Do you have another wig shop option? My onc gave me a list of places - apparently I'm eligible for a free one through them. Or check the above link. Here's their size chart and they say it can be adjusted an additional 1 inch:

Wig size1. Circumference2. Front to back3. Ear to earExtra Petite20 1/2"13 - 13 1/4"12 3/8 – 12 5/8"Petite21"13 3/8"12 7/8 - 13"Average21 1/2"14 1/2 - 14 3/4"13 3/8"Large23"14 7/8 - 15 1/4"13 7/8"

Does anyone know how to load a photo onto a post, other than the profile pic? I've seen a lot of women do it and haven't figured it out yet. "Insert image" up top asks for a URL. Maybe it's the fact that I have a Mac....

My hair looks good! I'll probably post it as my new profile pic. My boyfriend likes it, too - and I didn't realize until after that it's very close to one of the wigs I was looking at (except the wig was red). 

rachelvk

Well that cut and past did no good! Markat, the dimensions for large are:

circumference: 23"  front to back: 14 7/8 - 15 1/4    ear to ear:  13 7/8 

darlam

Well, waited all day for the horrible nausea and diarrhea to hit. That has been one of my biggest fears. Definitely feel queasy with little appetite, but no volcanos, thank God. Took Claritin before the Neulasta, only very mild achiness. Hoping everyone else is hanging in there, and feeling better soon.

Really, the worst of this for me has been the steroid. Aside from the reaction during chemo, the oral steroid the day before and after makes me short of breath, racing heart, pulse doubled, and can feel heart "flopping" in my chest. Tireder than I've ever been, but too hopped up on the steriods to sleep much at all from Wed. till today....finally took 2 1/2 hr nap this afternoon and feel like a new woman. Think the MO and I are going to have to discuss alternatives to this particular medication. Yech!!!!

My port is a little tender after being used, but nothing major. I really don't think they are all that easy to dislodge. Use common sense with activity, if it hurts, don't do it, otherwise I think you're good to go after a day or two. 

I am hoping the cold cap therapy saves my hair, but got my wig today to be prepared in case. Planning a buzz party too, if I need it. I am actually very pleased with the wig; the cut and color is very similar to my own, and my husband says it's actually "sexier" than my real hair! Not too sure I wanted to dig into that comment too deeply! Markat, big head, big brain, smart woman; that's how I see it! Laura, Check out American Cancer Society TLC catalog, I got some attachable bangs there that look pretty good. You can return anything you don't like if unopened. Got my breast prosthesis yesterday too, and feel more "balanced" than the little pillow puff thing I've been stuffing in there.Want to reconstruct eventually, but one step at a time.

Keny, sooo glad to hear of reassuring test results. Yes, I think that is one of the hard things about all of this. Every ache or pain makes you wonder, and I think to some degree we will always be fearful of recurrence. Hopefully it is something we will learn to handle without being consumed by it as time goes on. 

I also feel for those of you with small children. The holidays have to be a particularly hard time to be dealing with all of this, and trying to make things as normal as possible for them. I also have two daughters, 25 and 20. The 20 yr old is also away at school, will be home for break next week. The 25 yr old is local, has two preschoolers, and helps as she can, but sometimes the peace and quiet outweighs the assistance, if you know what I mean. I love my grandsons, and feel guilty about needing only small doses of their love right now; but like everyone has said, we as moms and women are givers, and for once we are just going to have to learn to see to our own needs first for awhile. This Christmas will definitely be low key for us, and thankfully mine are old enough to be told that. 

markat

Darlam thanks, that's right!



Rachel- thanks for the info! Its probably around that size. I guess most people don't have a large head lol.



Thanks for the claritan info. I'll have to try it. I'll get the neulasta shot Tuesday.



Cancer is definitely making me batty. I feel

like I'm always forgeting things and in a fog. And I haven't even started yet.

rachelvk

Kelloggs

Wow...it's amazing how much I missed in one day!  You ladies are all wonderful and I feel better every time I read posts.  I bought my wig today..it's on order.  I went for a different look, longer. I figure the people who see me everyday know I'm doing chemo and that it's a wig....and the ones who don't know me will think it's mine!  It's a win, win.  But I have to admit I am not looking forward to losing my own  

Kenyo - I know what you mean about cancer consuming your life.  I find myself thinking I don't feel good even though there is nothing wrong.  I felt fine before I found that damn lump and now I freak out at every ache or pain, sneeze or cough.  I hope I'm not sabotaging how I will feel from chemo!

 Hang in there everyone....big hugs and many thanks!

Mardibra

Had my Nulasta shot on friday. Took a Claritan on Friday and today. No pain so I will skip it tomorrow. Also, my heartburn was killer Thursday and Friday. Nothing to speak of today. For me the worst has been then steroids too. No racing heart or anything but didn't sleep at all Thursday night. I crashed big time yesterday and slept from 6:00 pm to 11:00 pm and again from 3:00 am to 7:00 am. Ran some errands today and crashed again from 5:00 to 9:00. Tiredness is definitely kicking in and hanging around. Regarding the holidays, my brother volunteered me to host Christmas dinner! Whaaaatt?. He seems to be in a bit of denial. House full of people and a big dinner and all the clean up? I don't think that's going to work. Someone else can take over this year.

darlam

Mardibra===JUST SAY NOOOOOO!!!!!!