August 2010...anyone starting chemo besides me?!
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Hi all! Hope everyone is having a good day.
First Tx went well. I think going for a run first helped a lot, physically and emotionally. So far nothing too bad. This morning I've been having some diarrhea and lower back pain, but otherwise feel fine. Going in for Neulasta shot this afternoon. A little nervous about whether I will get the achiness and bone pain, but basically not too worried.
Zachsmom: I hope you are able to get bak to exercising soon. And I totally get your image of being, "strong, muscular, and well, bald." It resonates with me too.
Rachel: Thanks for letting us know that you're going to shave around the day of your first Tx. I have to say, I'm leaning more and more toward getting my hair shaved this week. It felt so good to get my first Tx out of the way (My Terms and all) and not have it hanging over my head, I think embracing my baldness now instead of having it hanging over my head, pardon the pun, would be a good thing.
Calamtykel: Good for you for not giving up your running. Especially since you're fairly new to it and in that "this is great; I love it; it's making my life better" stage of the running experience. It's an important time for you to keep it in your life. Thanks also for the M.J. Fox quote. It's a great one. As for the baldness/hat thing, I highly recommend taking a few fun-day hat/scarf shopping sprees with your dh and/or close friend. It helped me to frame it as a fun thing to do to get ready to have fun with all the hat/scarf possibilities there are. Pretty, fun, simple, flashy, grungy, young, sophisticated, silly, elegant -- you can find whatever you're looking for. BTW, I have found that dept. stores don't have the best selection, but a lot of the other smaller stores in any given mall will have more selections than you might think, and often, especially in store for younger people, less expensive. I know there are good websites for this shopping, but I found, for me seeing them and trying them on, helped me think of it all in a more positive and creative way. Taking someone good along with you is key, though. Otherwise it could turn lonely and sad. Besides they're the ones who will look at you when you try them on, and smile like when they first met you and began to discover your beauty and cuteness, and say things like, "that looks precious on you!" or "that would look beautiful with your blue dress!"or "you HAVE to buy that hat!"
BTW all, I also recommend doing a google search for "cancer boutiques" or cancer store" or "cancer products" or similar searches in your area. I have found several little stores in my area (western suburbs of Chicago) that sell cancer products. My favorite one is called A Woman's Place Inc. located in Naperville, IL. It is run by a woman who has battled CA four times and decided this is what she wanted to do with her life. She sells everything from post-mx bras, to prosthetics, to wigs/hats/scarves of all kinds, to jewelry, to lymphedma compression sleeves (although beware of buying one of those without a professional fitting by a doc, or physical or occupational therapist) to CA skin/hair care products, etc. The last time I was in, I was post-mx and gearing up for chemo and buying hats. She told me, whenever you're ready to shave your head come back and I'll do it for free. She said she is trained to do it, has the right products to use, and it's just something she decided she could do to give back. So that's where I'll go. She, like most of these stores, does take insurance for things that are covered as long as you bring your info and do'c script or order.
Like you, calamtykel, I'm still kind of ambivalent about the wig thing. I think I would hardly wear one, but my husband do do things like symphony concerts and theatre, etc. And maybe I would want one for those kinds of things, but I just don't know if it's worth getting one.
Lisa: Glad Tx went well. Thanks for letting me know about getting your head shaved. I bet your dh will wind up thinking you're cute bald. You have such an attractive, pleasant face, I can see it looking totally adorable on you!
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Lizzymack: Can't help thanking you again! And for moving me into the "already getting better" category. As for your running question, I've always been very small chested so haven't had your issue with running pre-surgery, but I can tell you that as for post-op running, I haven't had any problems -- other than not being at the peak of fitness and kind of feeling in some ways like I'm starting from scratch. That's okay, though, I'm just grateful I can be out there doing it at all -- My Terms! The endorphins of it, not to mention feeling good about myself for it, really helped yesterday.
Mmahle: Thanks for the list. Unless it was there and I missed it, I would add the smallest size kitchen garbage bags for your car, bag, etc., for those possible vomiting episodes. Also be sure to have your insurance info and a list of all of your medications in an easy to spot in you wallet or purse or whatever, just in case.
I love your pink mohawk idea! I might do something similar.
Welcome Youngmom! This is a great group to get support for yourself, and to help each other. I know we will also be grateful for your offer to share your previous experiences.
Also, for what it's worth, since I am no doc, if I were in your position, I would definitely be leaning torward doing more chemo too.
Best wishes for a good day to all!
Wherria
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Wow, I can't believe it is August already and some of our group have already braved their first treatments. Congrats to those already on the road and I am oddly looking forward to getting mine started next Friday.
One thing that I am anxious about is nausea/vomiting. I saw my onc last weeks and asked about prescriptions for anti-nausea meds but he said they would give me some in the pre-meds and that might be all I need. He said if I end up needing some at home they could call in a prescription but he didn't want to give me a prescription ahead of time. Has anyone else's doc said that? I thought it was pretty much a given that I would need anti-nausea meds to take for the first few days after treatment. I really don't want to end up getting really sick! My regimen is TCH if that makes a difference...
Also I am really enjoying hearing what others are doing with their hair. So far I have decided not to get a wig, everyone seems to say that they are hot and uncomfortable and since I live in Florida I really don't want to be wearing something hot on my head. Of course, the downside of not having a wig is that any kind of scarf or hat look seems to announce "I have cancer". I am a knitter so I decided to knit myself a bunch of hats. I have made several different colors and patterns and I used a nice soft cotton yarn so they hopefully won't be too hot and I can machine wash them. With regard to shaving, I am reluctant to actually shave my head, I kind of want to wait and see what happens with my hair. Once it actually starts falling out I might change my mind but for now I think I'm just going to get it cut to chin length (it is shoulder length now) so that when it does start falling out at least the pieces will be shorter!
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Wherria, I will definitely check out the Naperville store. Thanks for the info. I have a funny feeling about wigs, don't know why, but need some scarves and hats.
All, anyone have to choose between TAC & TC?
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Hi all! Most likely starting chemo August 12, so going along for the ride with y'all
. Oh, boy, that hair thing--in June I got my firsrt haircut in 5 years. I am thinking a scalp tatoo is the way to go 
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A scalp tattoo? Hmmm, I was thinking of something that looks like pasties for the boobs instead of fake nipples, maybe daisies. What kind of tattoo are you thinking of?
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I thought of a scalp tattoo also, but decided I could just good ole' Sharpies when I want to, like one that says, "Place Hair Here" with arrows pointing out.
Definitely the tattoo, for me instead of fake nipple and areola. I told my surgeon, and I mean it that when I do recon. I want a yellow and black smiley face just like this
.Adey: I had to choose between ACT and TC. I wrote about it in a few lengthy posts a week or two ago. Let me know if they help or if you'd like to know more.
wherria
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few things from my experince with chemo:
1) for those of you planning on shaving your head, I would recommend only shaving down to 1/4 inch(1 blade on electric clipper I think) instead of shaving it completely bald. I had read this info before my first rounds of chemo in jan and people said to not shave all the way down b/c your scalp was more sensitive and it could hurt. I did only go down to 1/4 inch and although I did lose more hair I never went completely bald which I now consider to be a head start on getting my hair back(although I will lose it again with more chemo). Also once you have shaved down to a stubble if your scalp starts to get sore or itchy(ingrown hairs) take duct tape(you read that right) and roll pieces of it over your scalp. This removes the small hairs that are hurting and i swear this totally worked for me.
2)If anyone is getting the Neulasta shot after chemo you may want to take regular Clariton. Again another thing that was recommended on these boards. You are supposed to take 1 pill a day starting a few days before chemo and then for a few days afterwards to help ward off aches and pains that may be caused by the shot. I never had any issues with the shot and have no idea if it was because I took the Claritan or not but I took it just to be sure.
3)wig: I did get a wig and wore it all of the time in the beginning but as I became more comfortable I wore scarves a little more often. Now in the summer I could totally see not wanting to wear a wig but if you aren't sure and especially if your insurance company reimburses you, why not try on some wigs just in case. I was suprised by the huge selection of wigs and although it was very weird to wear fake hair it was helpful in making the transition from having hair to not having it anymore. Just my own personal experience. Also I swear I got more compliments on my "hair" from complete strangers almost on a daily basis than I have ever gotten on my real hair. Guess my real hair wasn't as fabulous as I thought it was.
If I can think of more things to share I certainly will. You all sound like you are already strong & fighting which is exactly what you need gto kick some cancer a**.
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OMG!!!! SHARPIES!!!!! I can't believe I didn't think of that! Then you can change it all the time! Hours of fun for the kids!
I just thought that I could get something totally inappropriate on my scalp and then when I got back to 'regular' life--it would be covered up by my new hair
Now fipples.....I really thought they should offer some tassle spinning classes or something along that line. I am nowhere near thinking about if I will get one or just leave a blank......I have YEARS to decide-right?
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Fipples! 0
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Hello ladies: I saw the oncologist today and although I don't have a start date yet, I do have the meds he recommends: 3 cycles of Fluorouracil, Epirabicin and Cytoxan every two weeks, the same cycle of Taxotere. And, yes, he said I'd lose my hair. I was hoping to get away with the chemo I've heard called "chemo light" that doesn't always result in hair loss. I have a friend who was diagnosed about 6 weeks before me and she is doing chemo first, surgery later whereas I did surgery first; anyway, she took me around town and showed me all the places she has bought hats and scarves and wigs. It was a fun day even if it was for such a shitty reason. I recommend going with a friend; it makes it a little less depressing!
I love the comments on the nipples. I had told my DH I was getting daisies or sunflowers, I couldn't decide which.
Regina
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I haven't heard about 'chemo light', what is it?
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zenith,
my neck was stiff for four or five days...the operation was worse than lumpectomy in my opinion..
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I'm also beginning chemo-Aug.6.This is my 4th time, is there anyone else out there who has done it this many times.?Last time ended April 2009.Just got my hair back enough to trim a few months ago.Started going to the gym in Jan.lost 14 #, so will probably gain that back,gain about ten lbs each time.I haven't heard of too many people who have gone thru it so often,so would really like to hear from anyone who has.
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Hi everyone! I just did my first treatment of CMF earlier today so at least I am finally moving in the totally healthy direction! (and I suspect CMF might be the "chemo light" mentioned above). I know the chemo I am getting is not as intense as most of you all but I was still scared and worried. But no fears -- all three of the drugs were given via an IV and I was there for about 2 hours. I was given a prescription for Compazine but I haven't used any yet as I don't feel sick at all. My onco also wants me to use Pepcid for the next week. Since the Biotene mouthwash I ordered doesn't come in until tomorrow, I am using a salt/ baking soda to be proactive in terms of any mouth sores.
So one down, five more to go during the next 18 weeks. After the second or third treatment, I will also be doing radiation at the same time. The nurse I worked with today said that in her 16 years working there, she has never seen anyone on CMF completely lose her hair -- but since my hair is super-fine to start with, I suspect any hair loss is going to be noticeable -- and my roots are going to be popping up any time now since I forgot to get my hair colored last week! So ... I already picked up some head scarves to be ready if any hair falls out.
One final note -- there were some wonderful women in infusion services (while I was there) getting their own treatments, and now I feel a bit guilty that I even feel bad about my situation. CMF seems so much easier -- I sort of feel like I don't have the right to feel bad about my own situation.
Thanks to everyone for your tips! I know that the SE's of any of the drugs impact people differently, but I appreciate knowing what to do when those experiences happen!
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Yes, CMF is the one I've heard called "chemo light" but I'm not downplaying anybody's chemo; it all sucks! But I think CMF has fewer bad side affects than some of the other chemo cocktails.
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Yes, don't underestimate whatever you're going through. Besides, there are great variances among every individual going through all kinds of chemo in terms of how many se's they get.
Well, nearing the end of Day 2. Did anyone else feel really tired on Day 2? (I'm on TC.) I had diarrhea and a stomach ache most of the day, and just really tired. How did others do?
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Wherria - I feel tired today. The only real problems I've had are wicked cotton-mouth and some indigestion. But, I don't feel tired like I want to nap (although I did nap today), it's more like a lack of energy. My husband noticed that I'm being very quiet at the moment, which is unusual for me.
Got my Neulasta shot today. We'll see how I feel tomorrow. I'm just amazed by the number of drugs going into my body - between the chemo, the Herceptin, the steroids and Benadryl, the Neulasta, the 3 anti-nausea drugs, the Prilosec, the Senna, in addition to my regular blood pressure, and cholesterol drugs - oh yeah, and the insulin, GOOD LORD I feel like a walking pharmacy.
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Hi y'all! For the ones who started in the last couple days you sound pretty good! That is really helping ease my anxiety. I had a PET scan today which was really nice since when I got there they informed me I couldn't be around pregnant women or babies. I have a 20 year old pregnant daughter that lives at home. I thought, I wish I knew about that prior to coming in. I came home and stayed in my bedroom until she went to her friends house. Then the radioactive stuff ended up making me run back and forth to the bathroom. Did any of y'all have SE's from that stuff? It didn't last long at least. I am getting the port put in tomorrow. The fun just keeps coming. I am going to be glad to get chemo started on Friday I'm ready to get the show on the road.
I was cracking up about the Tats y'all are talking about that is AWESOME! I ended up with a lumpectomy but, told my husband I was getting a Tat over my scar.
Ladyinbama-sounds like we will be having the same chemo FEC I am having 6 cycles then because I am HER+ Taxotere and Herceptin together I believe that is the way it is. I will confirm on Thursday.
Youngmomof3--Thanks for bringing up the Claritin. I had that on my list and forgot to get it. I am hoping if I have to have the Neulasta that I can just give that shot to myself at home. I have heard of some doing that.
Sounds like we all have a plan and are on the road to recovery!
*hugs* to all
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Lisasingglem: See you are on TCH, same that I was back in Jan. Cotton mouth you mentioned - same thing I got. Should be gone in a few more days. It was the worst after the first one, and then not so bad for the next 5. Lack of energy - there is your Fatigue. For me after # 1, it hit on days 4 to 5. By day 10, felt pretty good. This combo never gave me nausea, it is on the milder side in that aspect, unless one has a very weak stomach.
As young mom mentioned, duck tape really does work for the loose hairs after the shave. My hairdresser did the 1/4 " buzz. Looked like the Demi Moore style from GI Jane. Then over the next few days, the majority of that stubble fell out, or came out via duck tape. My scalp was not 100% hair free. There was about 10% hair coverage, and what was left did actually grow all thru Chemo. Once the real hair started to grow after Chemo, then this remaining fuzz was cut off.
On the TCH regimen, day 18 was shave head day for me. It was falling out in clumps. Eyebrows and eyelashes hung on until #5. Good thing was no shaving of the legs or underarms for about 4 months! Always look for the positive.
I never heard if anyone wanted the headwrap that I have. Also be sure to check out the website if that style is something to your liking. www.franceluxe.com Click on the "Good Wishes" link.
Will continue to read and post to help all of you as much as possible. Have the most knowledge of TCH of which I was on. Still on the H till Jan 2011.
You guys will be fine! Onward and upward back to health!
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Me...Doxil starting aug. 13. EEWWW...........
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I am tired...heartburn...good night...
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Carol, I am so sorry you are going for a forth round. I hope they get it this time. I don't know anything myself, but since I saw no one answered you, I thought I would just say that I did see a thread about recurrences. They all sound very knowledgeablever there.....
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Good evening fellow Aug. gals, I'm not so sure if it is comforting or making me nervous to start chemo. I really wouldn't cut my hair off till I knew it was going to fall out. Not everyone loses their hair, do they? I ordered a wig, a few hats and scarfs, I'm not going to open them till it is falling out in chunks then I will probably just take the clippers and shave my head myself. I am just wondering if everyone else is using the medicine they prescribe like the steriods, sleep medicine, and nausea med.? Just wondering about these and if everyone takes these. Thanks ladies
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Very helpful to read the comments of those going through chemo NOW, tomorrow is my big day. I'm nervous but know I'll make it. I have a weak stomach and taste it when they even flush my port so I hope the anti nausea meds work. I got a short hair cut last week and had it dyed platinum blonde for fun! I went to a Merle Norman and tried on several wigs but I wasn't mature enough to buy one, I kept picturing David Spade or the movie The Wedding Singer. Temp in St. Louis was 104 today, too hot for a wig! I think I'll stick to scarves and hats. Worried about side effects but ready to get things going. My drains are finally out and my arms are getting stronger each day. Thanks for all the positive comments. Good luck ladies!
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Iowa,
i am using all the medicine.. i need it...
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carol, I just sent you a private message so check them when you get a chance.
Tammy
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HELLO ALL!!!!!! It is your fearless leader checking in!!!!!!!
I had a very busy day and I get back to this thread having exploded with the likes of nipple tats, skull tats, duct tape tricks for falling out fur, diarrhea (I am sure we will have a bit more of this one over the next number of weeks!!!!!!) and a plethora of new members joining us!!!!! Good talk, good stuff...you girls are making me proud!
Now if only bc was the judge in the Lindsay Lohan trial we could, quite innocuously, paint a message for bc on our finger nails but alas we have no such opportunity!!!! We shall, therefore, talk to bc in the very same vein of Lindsay's message to that judge with our attitudes, our workouts, our skull tatts(!), our proud-to-be-bald 'ness!' and a choice finger or a few words spat out into the empty air in front of our face in an effort to let it all out and tell bc where to go!!!!!!!
I will be doing a quite necessary midweek update and I wish you all the best who are starting tomorrow and for those who have already begun, in the great words of AC/DC: For those about to rock, WE SALUTE YOU!!!!!!!!!
Sweet dreams all and welcome to all our fabulous new members!
Liz0 -
I'm starting to get really really cold feet after meeting the 2nd oncologlist yesterday. It made it real somehow. Actually I'm feeling really terrified. I'm scared the chemo will kill me before the cancer does.
There are SO many side effects- how many are unknown? I have all these thoughts running through my head. I'm trying not to be afraid, but I am.......I will probably start late next week or early this week. Need to touch base with my onc today regarding the treatment regimin as it's slightly different than the first onc I saw (who recommended 12 weeks of T in stead of the 8 weeks she recommended.) Both recommended 8 weeks of AC. I'm just mixed up - I was told by BOTH OF them that this is all "standard protocol" --if it's standard, then why the difference?
I also found out I'm a IIa instead of a IIb when my onc. went through the path report with me............for whatever that's worth
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Calamtykel: I'm really sorry you're feeling so scared. Does it help you to read about the things you're scared of, or does that make it worse. One reason I ask is that the more I read about chemo, the less afraid I become, because everything I read is a reminder that a.) the worst side effects are rare b.) the most common side effects are very treatable (nausea being the best example -- anti-emetics work very well and there are lots to choose from to find the ones that work best for you) c.) most women these days have a pretty easy time with side effects (everybody seems to say chemo is "very doable." and d.) you may have some side effects, but by no means will you have all of them, and there are lots of tips out there (and here) that can help you deal with the ones you might have. Another reason I ask relates to your question about treatments that differ all being "standard protocol." If you are interested in learning about Practice Guidelines recommended by the NCCN (National Comprehensive Cancer Network) which most onc's follow, they can be found at www.nccn.org. Just look for Clinical Practice Guidelines in Oncology. If you read through it, you will be able to find your stage/grade/type of cancer and what preferred treatment regimens are recommended. It can be a lot to read through, but I was able to find mine pretty easily, and it gave me better understanding of why my onc's were recommending which regimens. The National Cancer Society mails them to people who request them, but when I got mine in the mail it was the printed Guideline version from 2008. At nccn.org, you will find the 2010 version.
Hope this helps. Let us know what your onc says today.
IowaSue: No, not everyone loses their hair. It all depends on which drugs you're getting. Your onc should be able to tell you if you will or not. As for the support meds, I'm taking most of them. Not sleep meds or anti-anxiety meds, though, because I'm already on them thanks to my psychiatrist. I'm not taking very many anti-emetics though, partly because I don't think I need them all (I'm on TC and that tends to cause less nausea than some other regimens), and in part because they are very constipating. I'm only on Day 3, so I figure I still have some figuring out to do about how to balance anti-nausea, anti-diarrhea, and anti-constipation meds. Funny thing is I tend to be susceptible to all three, so we'll see how this plays out. When I got my infusion Monday, I asked the nurse, which my particular cocktail tended to cause more, diarrhea or constipation, and she said diarrhea, so I've taken that into account. I recommend asking your nurse(s) those kinds of questions. Nurses have a wealth of knowledge about this stuff and see deal with it and hear about it more than the docs do, so sometimes they can give you more specific advice than the docs.
Best wishes to everyone for a good day!
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