August 2010...anyone starting chemo besides me?!
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Happy Birthday Zachsmom!
I had shaved my hair a couple of weeks ago and didn't see hair loss and thought--"now that may have been a silly decision". However, this past week, my hair seriously just fell out and now I am patchy and bald in places and some hair in others--NOT A NICE LOOK
I am on 3rd day of Emend -- last day of Dexamethason and finished Zofran yesterday. I feel good---have a slight nausea feeling. This was the first day that I actually ate a breakfast rather than a smoothie because I was scared from First chemo--hoping that actual food will help settle my stomach.
I second the nomination for Lizzie for cape---well deserved.
Wherria--I am still having a slight left back twinge that had me all freaked out for my bone scan. Tomorrow, I am starting massage (as agreed to by Oncologist) and perhaps some Yoga to help me stretch as I think the stress has caused havoc for sure. I am in a Run for the Cure Oct 3rd and hoped to run the 5km--something easily done back earlier this year---not sure if I will be running--but will be there walking!
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Happy Birthday Zachmsmom!!! Here's a toast to many more!! : )
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Happy Birthday ZACHSMOM!
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I will be starting September 9th. 6 X Taxotere and Cytoxan 3 weeks apart. The 7 weeks of daily radiation M-F and then back on Femara. They removed my ovaries in January and I have been on Femara until this week. Had lumpectomy and now on to chemotherapy.
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I spent 5 hours in the ER last night since my WBC was low on Friday and I had a fever last night. They couldn't find the source of infection but sent me home with cipro. Does anyone have an opionion about if my onc will cancel Thursday's infusion because of this? I am fine now. Fever down but finding it hard to take cipro 2 hours befor or 6 hours after dairy products! happy birthday zacksmom!
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you girls are awesome. Thx for the supportive words regarding my decision. I do believe that my previous chemo and surgery most likely took care of the cancer and I did go for a 2nd opinion when my onc recommended additional chemo and the 2nd opinion told me that more chemo was not recommended and that there weren't any studies done to show that more chemo would decrease my risk of reoccurrance but I did agree to do the additional chemo because I was afraid that if I didn't and the cancer came back it would be my fault and I was afraid to take that risk. I also know that if I had done surgery first and then chemo I never would have known that the original chemo didn't kill all of the cancer cells so while this info was helpful in some ways, in other ways it took away some of the peace of mind that people may get after doing surgery and chemo. It all just sucks but then again so does cancer! I will still do Herceptin for the year and will do rads all of which seem to be the protocol for my type and grade of cancer. JSW I too am curious to see what onc has to say; I think it better be an apology for putting me through hell for the past week but I highly doubt it. I like him alot and think overall he is a very good onc but he also has a God complex. I am so happy because I have been feeling soooo much better the past two days other than pain from my surgery but even that appears to be doing slightly better. I just can't wait to feel like myself again...someday:)
Happy Birthday Zacksmom. I know this isn't how you planned on spending your birthday but just think how awesome you will be when you celebrate your next one,10,30 birthdays.
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GOOD DAY, CHEMO-SABIS!!!!!
I hope you all are having good weather as we definitely are, me and all the NJ housewives/shore girls/jerseyliscious babes (!), on this thread are!
Zachsmom: HAPPY BIRTHDAY to another Lizzy!
Zenith: almost guaranteed you will NOT be having chemo Thursday. With a pending infection, it would terribly injurious for further incapacitation of your WBC with our WBC-ruining pal chemo! Take it easy and get as much protein as you can. Write down your temperatures and the times taken also. I am only pretty sure that might help your docs.
Another new member!!! WELCOME drbeall and, as I tell everyone, I am so sorry you meet the criteria to be with us but I am sure happy to have you! Consequently you and I will probably be starting chemo about the same time so I will share with you lyrics from the one and only Michael Jackson, as follows: YOU ARE NOT ALONE, I AM HERE WITH YOU etc...!
Calamtykel and Wherria: out going for a run!!!!!! Nice job, girls!
JSW and Ladyinbama: Good point on the ACS campaign on more birthdays. That is why we are all doing this, right?!
Rachel: I hope you get rid of that nervous twinge/twitch that developed while waiting for the bone scan results. Massage, I am only pretty sure, will take care of that.
Everyone.... Wherria brings up a good point about my moniker. Part of it is that this has become my mantra and part of it is just plain silliness! More importantly, however, is I am a bit of a type A and my **BIGGGEST** fear was getting cancer. I am not joking when I tell you this was it...the worst thing that could happen because I just could not bear the thought something would be in my body, that which I could not control, threatening my life and potentially duplicating more rapidly than it could be controlled. All I ever thought was I could NEVER live with this kind of a dx. Guess what?! What you fear MOST can meet you ½ way! So here it is, the scariest moment of my life, the thing I feared most I no longer fear. It is no longer scary and no longer do I feel I could not live in my own skin with it. Sure I am vulnerable and I have my pissed-off-at-the-world days like Friday but overall, when the thing you feared most in this world hits you right between the eyes, your fear has been assassinated. For these reasons I chose "fearless leader" because my biggest fear has been completely eradicated. I have always been a little on the strong side, too, so that is another reason for my name. Also, never once am I supporting you all and secretly suffering; when I am down, I share it and when I know you all need a little boost or some happy news, I try to be there. It is always from support and caring that I greet you all and never for any other reason. I do get upset and when I do, I will gladly share it and I do. Going forward, I will probably not have too many meltdowns and when I do I will let you know but, as always, I will remain......Your FEARLESS Leader!
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hello all sorry i disappeared for a while... i am gonna try to catch up on what i missed...
So tuesday i got my nuelasta shot and had some pain and achyness, but wasnt worried. Wed i had much more and just didnt feel good so i slept for a few hrs. About 10 pm i woke burning up, had a fever of 102! My onc said that if i ever went above 100.4 to go into the ER so i did, i was admitted. All the labs came back negative, so they cant figure out why it got so high. my white blood count was highm thur as well running a fever... it did break on thur afternoon, friday and sat i was fine, but they wanted to keep me in til sunday. when the dr came in on sat he once again repeated that i was fine but htey needed to keep me for observation. the whole better safe than sorry adage! but i convinced him to let me go- i felt like a rat in a cage! So basically on house arrest lol, have to stay home til i go to my onc on tuesday for a follow up... MY ONLY WEIRD SYMPTOM IS MY EAR HURTS AND WHEN I BURP OR COUGH IT KEEP POPPING (no pain)
the upside, hubby and kids cleaned the house top to bottom! it hasnt looked this good since before my DX!!!!
I am doing much better, still some hip pain, but def no fever!!!
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TEXAS: holy smokes! 102...that is wildly dangerous. It is short skip and a jump from 102 to a very dangerous zone. I am so glad you woke up. House arrest- LOL!!!! I am so glad you are ok and came home to a spotless house! Good to hear from you also. I was wondering where you went!
Last night...liquor-induced ruminations!!!!!
- I am so glad I got a bmx because NO MORE BRAS and NO MORE MAMMOS!
- I am really starting to like my wig!!!!!!!
- I have always worn my hair, not 1/2 way down my back, but perhaps to about mid-shoulder blades and although our hair comes back, it is going to take probably 2 years from the end of chemo to get it to that length again. I had the most amazing epiphany last night!!!!! I realized that I could shave it now, keeping it in one piece and then, when my hair grows back enough I can get a WEAVE using my own HUMAN HAIR!!!!!! It was ingenious! This is why I drink!!
Speaking of drinking, I lived on the beach for a while and on my way back from Manhattan, I would make stops along the way starting in Manhattan and then in Westport, sometimes Fairfield and finally home. Well, by the time I got home, suffice it to say, I was in good shape!! My neighbor used to wait up for me and we would drink and have such a blast...I loved her. She was so funny. She used to look forward to me getting home as she knew I was going to be ready to party...still! In any case, my speech is naturally quite rapid and I really sound like a condescending ahole when I slow down...I had a Yeshiva professor as a client once and he said it best: we are all computers and you were just built faster than the rest of us! In any case, my neighbor used to say liquor would make me speech faster, more eloquent and succinct than when sober!!! She was not the only one to say that! I have been told since kindergarten I speak too fast. I guess when I am imbibing I do whatever I want which includes speaking and talking quite quick!
Your FEARLESS Leader!
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Too funny, Lizzy!
I wish there was something fun in my glass to toast all the beginings, endings, and birthdays that this week end has brought!
Hopefully eveyone is feeling well--the ER on the holiday weekend can't be a good place to be!
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Okay I have officially installed a paper and pen notebook beside my computer chair so that I can keep track of what I want to say. Liz may talk too fast- BUT WE ALL TALK TOO MUCH.:) Can you imagine us in a room together??!!!?
Soooo..from my scattered notes...
Gingerbrew- I'm so glad you have your grandaughter with you. Kids are so much fun and demand that you take your mind away from your cancer.
Rachel- I've been thinking of you all week, maybe b/c you're my Canadian sis on here, but I am so so so glad to hear you've been given clean scans. Truly amazing news and I'm so very happy for you and the fam.
Lizzy- I was thrilled to see you rant. You rant like a pro. Your rants are infectious and funny and so you. Rant away girl, whenever you need it. We're all here behind you.
KatherineNaomi- thanks for the ChemoAngels tip, I LOVE getting things in the mail. I'm going to research it tonight.
Omaz- You Know You're a Cancer Patient When...is the funniest thing on this entire board. Good on your for sharing.
Wherria- is right. Cape to Lizzy. And Wherria, your comments were all too true and I second them. Lizzy- we all have a special place in our hearts for you. So rant away.
ZachsMom- happy bodacious b-day!:)
TexasRose- TAKE CARE OF YOURSELF. Lots of sleep, lots of rest. Protect that body and it's immune system. 102 is scary. And stop burping if it's hurting, sister!
That's it. Rob is making steaks on the bbq with a lemon meringue pie to follow and I think I'll have a bit of red wine to wash it all down with. Check in again later all. Hope you're having amazing weekend all.
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Sweeney is right; we are a talkative bunch. I haven't checked in all day and lots to catch up on!
Rachel: I can't remember if I congratulated you on your scans, so congrats (again?). When did your hair come out? I had my first FEC Tuesday and the onc said "15 days" on the nose when I asked when my hair would come out.
All: I'm going to try and do something fun tomorrow for Labor Day. Everybody have a good one.
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I know, right--I keep having to tell myself to stop typing! Who could ever keep up with all of us!
I am on day 17 I think after 1st chemo, and still have my hair. I think some people said between 2nd and third week. I am waiting......cause I as I wait for it to fall out, I am geting pretty scrungy from missing my usual hair removals.......but I would hate to pay for removal the day before it fell out. Silly, huh!
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Regarding the hair Lisa, I am approximately Day 35 with two TC treatments under my belt, third on Friday. I still have about 30% of the hair on my head. Yes, it is very thin, but if I were a man, I would just look like a balding old man, nothing strange. Strangely, it was "the hair down there" that fell out first, completely (at about day 12-14 after first treatment). Unfortunately, I still have hair under my arms, on my arms, and on my legs (why couldn't I have lost that first so I wouldn't have to shave!) . Anyway they say everyone is different.
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Yup, just one more 'wait and see'! I noticed people had very mixed results on this.
Really, just another bit of disorganization..... (this is a joke) Clearly it should be arranged so that we don't need to shave. I can skip waxing for a while too, just need to know when to start skipping!
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katherinenaomi
I signed up for chemo angels too. I came home on Friday from chemo to a people magazine and a lovely card from a lady in Alabama saying she hoped I didn't mind if her two boys drew me pictures
It was marked 'angel mail'. What a wonderful concept. I will definitely reciprocate for someone else when I graduate!Carolyn
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LadyinBama--My hair is really falling out now--I am 2 days post FEC #2. I thought it would be gone by the end of this weekend--cause truly nothing could look worse right now than my head. However, it is still in place in some areas--it is looking absolutely lovely! I am wearing my wig out to go shopping etc and with my kids--but otherwise scarves. My kids play ice hockey so the wig will keep me warm in the arenas!
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I shaved my head and of course am growing a crew cut since, but the texture/color really dulled so I knew it's was on it's way out .I have a ton of hair to begin with and even the minimal shedding was a mess. Anyway the first week I was in the shower and the hair down below came out like mad. For some reason that made me cry. My mom is a survivor and said don't worry you'll still have to shave under your arms- and she's right underarms and legs daily- not fair!!
Carolyn
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Sweeney, thanks for the positive mojo on my SE's. TX on Thursday and other than tiredness doing good.
Crafty Members: Any of you crafty? I picked up the McCalls hat pattern today and whipped out a red and a black turban .They only take 1/4 yd. Very cute and I can dress them up something twisted around them. My head is BIG and the tight ones make me look very peanut headed. These have a little play on top, so it helps balance out my hips.
Figure I'll want a break from wiggy occasionally.Libray lil0 -
Hi all,
Does anyone have mouth sores? It just started this evening on the roof of my mouth and along the side of my tongue - hurts when I swallow. I've been doing the biotene, and the onc said gargling w./ baking soda salt and water works best but it stings now that they've started. I asked for a script for magic mouthwash (anesthetic gargle) on Friday ( was # 2 A/C) b/c the skin felt scaly but wondering if there's anything for getting rid of them. Hate to deal with calling on a holiday wkend. Hope I get through this w/o hitting every side effect - weird, my counts are ok except platelets keep dropping - they did that during pregnancy too.
Thanks,
Carolyn
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I couldn't take it anymore and vacuumed my hair today. Yes, the vacuum cleaner - ON my head. UGH! The little drifty things were driving me nuts! I think about half of it's fallen out - I had really thick hair so I'm surprised so much is left with so much falling, but at least it's super super short - about 1/2" all around.
My friend who shaved her head except for the top came over tonight - she dyed the top HOT pink and has my name shaved in the back of it. HOW cool is that? Friends are awesome..........
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So why aren't the wild hairs on my chin falling out! I even tried the pet hair tape thingy and it didn't do a thing for them! I think the hair on my arms is all gone now. I look less like Benjamin Button now that most of my head hair is gone. Not shiny bald yet but not very scraggly anymore either.
I am almost three weeks out from chemo duew to the one week delay from Granddaughters visit. I feel so good, reallly good. Had a fun day which ended with Son and Granddaughter going outside Slug hunting armed with two flashlights and a salt shaker . Granddaughter is 7 and thought this was the best thing ever! Daughter SIL and new baby were here too. We played family Cranium and had a blast.
Kids over from noon to ten pm and just a fun day. Son and Granddaughter return to Arizona tomorrow. I will miss them alot but have such nice memories from these past five days. A real blessing.
For those of you who have been down with temps, I will pray for your good health. Seriously, I know we all have cancer but good general health is a good thing too, yes?
Ginger
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ckptry-I am sorry about the mouth sores, so far I have avoided them using the baking soda and water gargle. I would call the onco office, I have heard that magic mouthwash works great. Don't feel bad about calling on a holiday weekend, they get paid the big bucks to be on call and you have been through enough, no need to suffer any more discomfort than necessary!
calamtykel-That is soo cool, the pink hair!! Your friend must be a lot of fun, just judging by the pink hair, she must have a great personality and what a tribute, having your name in the back!
ginger- so nice to hear you had a great time with your children and grandchildren. I think that is the biggest lesson I have learned through this whole thing, just cherish the little things. Like that family game of cranium. I bet you had a blast. Those are the times I cherish the most, just being together doing simple things!
Going school shopping today, clothes and supplies! Kids go back tomorrow and I think my youngest still has a book report to write. Oh well, I told him mom can't stay up late, too tired these days, so he better get working on it first thing this morning. Hope everyone has a great day today. The weather up here is fantastic..what a great weekend this has been!
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Happy Birthday (yesterday) Zachsmom! I hope you had a great day!
Zenith Sorry to hear you ended up in the hospital. Whether or not you will get your planned treatment Thursday probably depends on how your body reacts between now and then. My onc's office checks blood counts before treatment and if you are below some cutoff (I don't actually know what it is) then they won't do the treatment. Hopefully your body will pep back up and you'll be well enough to continue as scheduled.
Texasrose I'm sorry that you ended up in the hospital too but I'm glad to hear you are back and feeling better! That is amazing your temp was up to 102 and I'm glad you got all checked out at the hospital. Also so great that your husband and kids cleaned the house!
ckptry I noticed a little sore spot on my gums last night and it is still there this morning. Not too bothersome yet but I'd probably better try the baking soda and water rinse. Definitely call your on call onc if yours are bothering you, that is why they have someone on call!
calamtykel The vacuuming your head cracks me up! And I love what your friend did with her hair! So awesome!
I am jealous of those of you starting to get fall weather. Here it is still pretty hot, not as hot as it has been but still it was over 80 degrees at 6:30 last night when I went for my evening walk. I can't wait for fall to start! I hope everyone has an enjoyable and side-effect free holiday Monday!
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Ginger - isnt it amazing how when the chemo sort of wears off, you feel totally normal?? You feel like you';ll never feel well again those first few days and then your body sort of overcomes it. I feel great too! I have more chemo next week.
My only complaint is a little cold -it's in my nose but isn't running me down body wise. I've upped my immune supplements (yeah, I know, contraversal, but I need to be WELL for my port placement Thursday and next chemo!) I have some ribs thawing and mariating and three loaves of spelt/oatmeal yeast bread raising in the oven. I love "catching up" on the fun stuff after I start feeling better each week.
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Calamtykel - can I come for dinner?0
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Not too make anyone jealous (!) but I don't have any leg hair or armpit hair either--strange---others do but I think that my days of shaving are done for a while--that is one thing that I won't complain about!
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re: hair. I'm still shaving my legs and armpits, but much less often. Like once a week rather than every day. I shaved my head with a razor to get rid of the mangey dog look, but there are a few spots I have to keep shaving once a week because hair re-grows there. I will be totally bald onstage for part of Jerry Springer, the Opera, so I keep shaving it.
I also have an idea that may be crazy. I want to get some photographs taken of me - bald - to commemorate this time in my life. It seems like a time of growth and realizing how strong I am, so I want to remember it - as strength. I talked to a photographer last night and he loved the idea. Bald and strong, baby! Bald and strong!
I have tech rehearsals all week this week. Yesterday I was in rehearsal for 10 hours (with 1 hour break). Today I will be there for 9 hours. Tuesday & Wednesday will be 5, and Thursday we have our first audience. I totally agree with Gingerbrew and Calamtykel about feeling back to normal. I scheduled my chemo so that tech week would be on the 3rd week of the cycle, and I am amazed by how well I got through rehearsal yesterday. I still have little things like my taste being off and stress is hitting me differently than normal (more like anxiety than normal stress), but otherwise I feel pretty much like myself this week. Yay!
Sending my best wishes out to Zenith and Texasrose. I hope you both are able to relax and feel better, and that your chemo regimens aren't put off too far by your trips to the hospital!
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Hi everyone, I haven't been on for awhile so I need to catch up on the reading. You gals are great! I have caught a cold and am acehy and congested. I am not running a fever but wonder if I can take a decongestant. Does anyone know? I have fibroymyagia which I took herbs for that worked great, but my Onc won't let me take those during chemo. Also, my treatment center was 3 hours from home, so I saw a different Onc at a closer cancer center and will have my next chemo on 9/13 at the new place, so I am kind of inbetween right not and would rather not call them on the weekend. I know they get paid big bucks though! I am also leary of taking any vitamin c and echinacea which I would normally take. Thanks for any info. Is anyone doing the hands and feet iceing for the T treatments and how is that going? I will start taxol after the AC. Take care, Coleen
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Hi 57Coleen - I am doing the hands and feet icing for taxotere. I have had 1 treatment. I bought 2 large insulated lunch sacks at Target for my feet and two smaller ones for my hands. I then used frozen peas to keep them cold. I brought a cooler with me to treatment. I think my feet got too cold and my hands felt cold but not frozen. So we will see! I am planning to keep doing it for the next treatment. Were you going to try? You can purchase Elasto-gel mitts and booties at Amazon.com, they are kind of expensive though whcih is why I did the cooler/peas thing.0
