Starting Chemo May 2008
Comments
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Why is it that veterinarians can notify pet owners the Fluffy or Spot needs a worm shot but doctors cannot manage to call with results?
Noelle -- SUPREMELY annoying. And rage cannot be a good thing for one's heart, no matter how healthy it is. Am hoping that the problem is just that you have such an enormous heart, and you've been doing all these races, etc. that that.... hell, I don't know what I'm saying other than I hope that it turns out to be aggravating, but nothing worse.
(Apparently I left my powers of speech in the lobby when I came into the building just now. Sorry to be incoherent.)
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Noelle,
Take a deep breath. Here's what I know. They started my herceptin during taxol. I had a muga prior to starting. I also had one a few weeks after starting it. My numbers dropped but the onc assumed it was from the chemo still being in my body. I was still in the range to receive it. This was three weeks ago, my fourth treatment and only second solo. I think the safe range is above 18 and mine was 22. Pre herceptin it was 27 so it dropped dramatically. He indicated that many times the number will stabilize and then go back up once your body gets accustomed to the drug. I won't know until tomorrow when I'm scheduled for treatment if I can continue receiving it or not. Remember, only 5% of women develop heart problems. When is your next scheduled treatment for? They really need to watch us gals because of the heart damage it can cause. I also had a crazy tech that screwed one up and I had to have it re-done. Nothing like sitting there all afternoon. I'll pray everything is okay and you'll be able to jump right back in.
I still can't believe they didn't call. How rude. Thinking of you....
Rock, I love your hair!
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Facial Hair
I hate to be the bearer of bad news but I think this might be. If my understanding is correct, doesn't chemo and or Tamoxifen throw your body into early menopause? The peach fuzz facial hair is acquired during menopause. I already had it before chemo. It was the last of my hair to leave and the first to reappear with a vengeance. I hope for your sake I'm wrong but if I'm right don't plan on it leaving. Oh and Rock don't shave again. It will return thicker.
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Well shit.............
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Well SHIT!!!
Chemo put me into early menopause as my Onc and his Gyno experts have determined. I have this horrible facial baby butt fuzz on my face and neck. I didn't shave it and I'm on Arimidex .... DAMN! FECK this crappola! When Rock said she shaved hers I had horrible doubt....does it grow back thicker like the legs? (sorry Rock but the worry just gets to me) Does this crap ever ever end? Why Oh Why! Please say this shit goes away! I don't want baby butt hair on my face for the rest of my life. I have so much more of my life to live. Damn this just pisses me off to no end.
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Um, no, I don't think it will grow back thicker. Rock and others...go ahead and shave that fuzz.
Yes, it's true that many of us get facial fuzz from the hormonal changes of menopause. I think this post-chemo fuzz is different, though. Maybe it's an extreme case of the menopause fuzz. For one thing, there is more of it post-chemo. The hairs themselves aren't thick, though--mine seemed to be fine, like the rest of the immediate post-chemo growth.
I could see the fuzz on my cheeks and jaw in the mirror, and I thought it was gross. So, one day I took a new razor and shaved it off. There was a lot of it. A few weeks later, it was back, so I shaved it off again.
Now, 22+ wks post-chemo, all that extra facial hair is gone. It never grew back after the 2nd shave. My cheeks and jawline are smooth.
Yes, the ends of the hair shafts were bristly instead of soft when it grew back after the first shave, so maybe it felt thicker. But, there is nothing about shaving that changes the hair bulb and root, so there is no reason why the hair shaft should get thicker. Or, did I sleep through that part of the lecture on hair physiology?
otter
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Noelle - I've struggled with a response all day. Your nurse is an idiot....yeah, I worked all day on that one. I try to understand where they come from and how hard it is to face "us" each each day. Why can't they give us the same courtesy? Seriously..if they have become THAT unconnected to "us" then they need to find a different line of work. Plain and simple. Nuf said.
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yes, my nurse is an idiot... but she is the one that said " You're over 40... oh ya, you're probably in menopause permanantly" and left the room when I asked about my menopausal sympoms and how they related to my age. A situation that upset me a lot.
Stupid cow! I have refrained from making a nasty call to the office voice mail- although I want to....If I am mad about her leaving important info on a voice mail, I will not do it back. I will call in the morning at 9:01 and wait on the line until my doctor comes.
My massive amount of facial hair left just like Otter's did( for some reason I want to always call you Otty.. and now I know your real name I still want to call you Otty!)
I am off to bed. This is a looong week at the store. Day 16 with no day off, and none in sight.
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Well SHITE from me as well!! I'll be plaiting my facial fluff if it's gets any longer!! Does anyone know anything about that pulsed-light hair removal stuff, because I will SO be in there if it works. I go to painting class on Thursdays and there is a lady there with an impressive black goatee. Please tell me that the baby fluff doesn't grow into THAT! Ellenoire, that is just not acceptable. WHAT is SO hard?? Everybody in the world gets too busy sometimes, but this kind of attention-to-detail is absolutely everything to people in our position. Surely people IN the medical profession know this better than anyone. Grrrrrr on your behalf. After feeling grand for so long, today I am dog.ass.tired. again. I cannot believe how heavy my legs feel. What's with that? I'll still walk Fibber..I enjoy the breathing oxygen part! FamilyR, I'm with you! I guess the crappola ends sometime
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PS Rock! I LOVE your cancer-girl glamour-puss avatar. Where will this end? Project ourselves forward 2 years! What will we look like?? XX
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Noelle-I hope that you get some satisfaction from the doc. Either there system needs changed or the nirse needs reprimanded-that just wasn't very professional. When I worked in a doc office, no abnormal results of anything were given over the phone, we asked the patient to come in so options/treatments could be discussed. The nurse at my gyn office called me and gave me my mammo results last spring, I didn't like that at all, and ended up calling back with questions and finally talked to the doc. It sucked!
So I have facial hair to look forward to? My baby duck fuzz is just now becoming (slightly) noticeable on top of my head!
Bad nausea last night, but better today. go later for Neulasta shot--let the fun begin! I keep telling myself, only ONE more to go!
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ONE MORE GRACIE!!! WOO HOOO CHEMOOOOOOO!
I called the docs office and nicely but firmly compelled the receptionist to make the Doc call me back. The Head Onco was busy, but she did try... and I told her the other Doc knew me better... and not to bother having the nurse call...I think the intreviews for help at that hospital must have gone like this: "Got Medical Qualifications? yes!
Are you an idiot??? GOOD you are exactly what we are looking for!"
2 hours later... No call.
I will keep waiting!
N
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Noelle, I hope your next post is that they've called back with an apology. Words of reassurance would be nice, too.
On the facial peach fuzz . . . I don't mind the baby fine fuzz so much; it's the long, coarse chin and moustache hairs that flip me out.
A question out of curiosity: do any of you still have post-chemo food aversions? I drank carrot juice during my first chemo, and though I didn't have any immediate nausea (that didn't kick in for a few days), I now cannot stand even the thought of carrot juice. (In fact, just typing this makes me shudder. Ugh.) Fortunately, a life without carrot juice can still be a full, rich life. It's not like having to give up grapefruit juice or something.
(Oh, wait, I can't drink grapefruit juice anymore, either. Thank you, tamoxifen.)
The really weird aversion I've developed is to crushed ice. I sucked on ice chips - slightly stale-tasting ice chips, at that - during every treatment. And while I can still face a cup of crushed ice without gagging, I'm surprised at how strongly I react to the stuff, how it takes me back there. Regular ice cubes for me, please!
Linda
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Linda, I must be wired differently. I didn't develop a single food aversion during chemo. In fact, I tried a lot of different foods during those first few days of each cycle, and I discovered some new things I really like. Some of my favorite soft foods, like tapioca pudding and chocolate malts, I ate during chemo; and now I crave them.
Go figure. Maybe it's because I never had any nausea from my chemo regimen (Taxotere & Cytoxan).
otter
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Otter oh wise one, I knew you would know something about the facial hair. Maybe there is a bit of hope for me. As I said before I had the facial hair going on before chemo but it came back with a vengeance. Maybe some of it will leave and will just be the annoying fuzz I had before.
Linda I don't have any food aversions but do have smell aversions. During chemo I loved the smell of Dial kitchen hand sanitizer soap, Olay body butter ribbons with jojoba butter (body wash) and Lysol Spring Waterfall scent. As a matter of fact you might remember me telling you that the Lysol smell took me back to a happy time in my life. Now the smell of these will make me sick and start to gag.
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Just got home from picking up my LD sleeve..... They had ordered me a daytime sleeve (not a biggie) and a nite time sleeve. Somehow I was NOT expecting to walk in and see something laying there that would make me look like a blue michelin man. Unreal. Somehow I am supposed to find a way to wear this thing that takes 2 to put it on me and survive thru hot flashes. I had a meltdown in the office and one as soon as I got home.... When will this crap stop????? No hair, no lashes, no left boob (can't forget that one), no eyebrows, fingernails falling off, no drive for anything, swelling trunk, swelling arm, and now this........Woulda been easier if I had been born a man I think. Ok I'm done whining now.... anyone have any chocolate to throw me.. <whimper>
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(((((((Jen)))))))
Indulge
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Jen,
Would you like a chocolate wig? Would that help? Check this out.
http://www.smh.com.au/ftimages/2003/11/14/1068674353606.html
If it doesn't post as a link just copy and paste
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Gracie - Only 1 chemo treatment left - yeah!! We are on the other side cheering you on and will see you soon.
The fuzz is all over my face, my family has commented on it as well. I also thought it was a result of being pushed though menopause, glad to hear that may not be the case. I do not know if I am brave enough to shave my face with a razor. I am fearful that I will get whiskers to go with my bald head and flat chest - nice look.
Noelle - Let your nurse know that your friends on the boards know what she did and they are pissed! Truly not fair. I received a (prompt) message that my echo was abnormal, but my onc clearly stated facts so that I would not worry overnight. It is not that difficult.
Roxi - The 5% stat regarding heart conditions - was that related to taxol or herceptin? My 2nd echo still shows fluid around the heart and I am just a bit concerned. My 3rd echo will be in January and they plan to fit me with a holster when my skin heals from radiation.
Jen -Thanks for organizing the list - that was awesome.
2 rad tx to go! Skin is red, red, red!
Jean
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I think that ruined chocolate for me....nope, cravings back.
Sorry Linda, no food aversions for me though I wish I did have some. Had my herceptin today and boy was I wrong with those numbers Noelle. They dropped my dosage because my range was still in the acceptable spectrum but on the lower side. Still able to get it though. I have three more scheduled and then another muga for January right before I see the onc again. Wow, can you believe it. No doctor appointments for 9 weeks. Holy crap!
Oh by the way, I figured out how to post pictures on facebook. Put some family shots out there for you all to see.
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Linda - Funny that you mention food aversions. I still cannot eat / drink a number of different items that I consumed in weeks 1 & 2 of chemo. Ironically, I could not eat them during any other week in chemo and still gag at the thought of eating them today. Things that top the list are apple juice, cranberry juice, yogurt (which I ate daily) and breakfast cereals.
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Jean, herceptin stats, not from taxol although they think the taxol may have added to the drop in my number if that makes any sense. It did go up at Monday's muga scan so that's a good thing.
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Eeeeeeeeeeeeeeeeeeeeeeeeewwwwwwwwwwwwwwwwww! wonder how long it took her to wash that out??
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I got a haircut today...okay...maybe just a trim..lol
Why do I feel the need to explain to them.."Yeah, I know its weird but I need a trim". Got the uneven hair on the back of the neck trimmed, the sideburns shaped, the scraggly survivors nipped and an little evening of everything else. I said to my 8 year old son at the dinner table.."Notice anything different? *big grin* (me that is). Long pause...."Your hair is growing?", he says. ROFL! Bless his heart he tried.
I love chocolate but that chocolate wig..not happening. Sooo not appealing. :P
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Doc called 3 times.. left messages at my house. I explicitely left my cell and my store numbers on the message this morning....NOT my house number.
Like I said.... hiring policies at that hospital.....
NIght y'all.
N
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Chocolate wig--no thanks and I love chocolate (when I can taste it.)
No real food aversions here. Nothing really has the flavor I envision it will have-I get pregnancy typr cravings, then when I get what I am craving, it just doesn't taste like I thilnk it will.
Bone pain setting in and I really need to get some laundry done today. (Maybe it will, maybe it won't) Pain meds should be kicking soon, then maybe I can get something done around here. It is chilly and rainy--doesn't help. Need to help DH bag up some angelfish to take to the local pet shop-although I doubt that I will go to town with him. (We have 12 aquariums set up npw!) I love watching the baby fish hatch and grow. They are like mini PacMen, chomping away at the food. (Doesn't take much to entertain me)
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I have to laugh at your "pac men" comment. My partner was thoroughly mocked by his niece and nephew for mentioning Pac Man recently. They kinda sorta hinted it was one of those "old fogey" references.
Which made me gulp, because I also have fond memories of Pac Man!! (And Ms. Pac Man.)
Linda
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Ladies, I need your advice.....a girlfriend of mine has been trying desparetly to find a good pair of running shoes. You all came to mind. She's looking at mizuno or puma but wants to make sure she's investing in a good shoe. She'll be using them for running and aerobics. Thoughts?
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In reality she should be using diff shoes for each sport, but a cross trainer would likely do. The best way to buy shoes is to go to a reputable sports/ running store and ask about the best shoes for what sport and get something that fits well. Everyones feet fit diff brands differently. For example I have high arches and run mostly trails, so my shoe choice is diff from many runners. Jean and Linda??
ok, so the stupid doc finally called with a pathetic excuse for an apology. The nurse was supposed to call me with test results B4 the heart scan department called with the second heart scan test info. My baseline heart function was 55-57 in August, now it has dropped to 50. All of these numbers are in the "normal" range but a drop is cause for "caution" so they are testing me again. The protocol for Herceptin stoppage is a drop of 15 or more, so I could do my next Herceptin on the 24th and the next heart test on Dec 5th and still likely be safe/ok (or perhaps drop to 49.... WTF?) So, since I was hoping to have my Herceptin on the 24th in the morning, so we could finally bury my mom's ashes on the 2 year anniversary of her death in the afternoon I decided to postpone the scan until after the next Herceptin. So, now I have 3 weeks with no Hospital visits. I thought it was idiotic to have more Herceptin until after the scan.
Worst case scenario? If the heart still keeps dropping then we can stop, let the heart recover(Herceptin damage to the heart is not neccesarily permanent) and then they can start again.
So, I get the 24th free to bury Mom's ashes and get that FINALLY taken care of. It is a long story why it did not happen b4, but it was all about Money and Timing, and since she requested a plot in a section of a cemetary that was not open yet we held off... and then I got cancer.
Wheee!
N
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Wait... Skype! I forgot. I think I signed up years ago. I do not have a webcam, but i'll get one!
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