Anyone on just Taxotere and Cytoxan?
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Hello dear gals ~
Txtina, let us know how you are doing. I am checking in every day almost just to say I'm feeling okay! Today is Round 1 Day 8 and I've had two good days! Woo hoo! I think I need to drink more water than they say, much more than 48 oz. a day.
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Hi Txtina,
Welcome aboard. Wish you didn't have to be here, but hopefully things will go well for you. I keep track of people's schedules, so if you wouldn't mind, could you tell me when your next treatment is going to be? I like to post the list for that week each Monday.
Good luck!
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I am so glad to hear this news because I have tx2 next friday and I, too, was in the hospital for 7d ays after tx 1......Hope being proactive with neupegen will help....just anticipating and dreading at the same time... 1/2 way thru.......Hugs, nannie
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Hello ladies,
I have been feeling soooo bad Wed, Th and today! Had to miss my class on Wed and Today because I felt like I had the flu. Wednesday evening I began to feel the achy, all over pain in my joints, just like when you first get the flu. What misery!! I ended up taking the vicodin the dr. had prescribed and that helped a bit. Wow! it was horrible! I feel like I am getting back to "normal" this afternoon, whew! I believe it is from the Nuelasta shot. I go on 10/7 for bloodwork and to see dr.
I was taking Claritin, but it didn't seem to help with the pain.
Eileen
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Eileen - that is exactly my day 4-6 with 7 getting better. I'm not sure if it was the chemo or the neulasta - but plan to do a better job of getting pain meds for the next go round. I'm on day 9 and only have occasional aches - finally feel human again....it does make you appreciate the good days. I don't know how people live in chronic pain like that. By the end you are so exhausted - hang in there and hopefully today will be a bit better.
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Hi Sherrie:
I haven't experienced anything like that. I hope that it is resolving and that your doctor got back to you on that.
It is day #16 after my first TC treatment. Within the first 5-6 days my WBC's dropped to a low of 1.4. With the Neupogen it had climbed back up to 9.1... HOWEVER when I went to the doctor's today it was 3.2. I'm beginning to feel crappy again and looks like thrush may be returning. Has anyone had that happen. Did they hold off on treatment? I questioned whether I should get more Neupogen prior to my 2nd treatment next week but he said he will do the Neulasta shot the day after. Does this sound like a plan or would you be concerned going into treatment with a low WBC to begin with.
Thanks for your help.
Katie
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Eileen and Ruth,
That was exactly how I was feeling on days 3-4 after first treatment, just SOOOO uncomfortable, just like the flu. But without the fever. Felt like I had a fever though. Then I had a good day, then I guess the Neulasta kicked in with throbbing aching. I too will get better pain medicine for Round 2. Today is Day 8 and I feel NORMAL. Wow. I have no idea what my WBCs look like because I'm not getting tested until the day before my next treatment.
When do you all get your WBC's done? Is it better to get them done in the middle, that way if they are down you can get them up before the treatment and not go off schedule?
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Katie & all -
I did get in touch with both my Onc & OB/GYN. My Onc thinks its the chemo messing with my hormones and since I'm 44, it's likely I'll go into "chemopause". Some women can have more bleeding in this situation. My onc wanted me to call my Gyn though because there is a possible concern with losing too much blood and becoming anemic.
My Gyn is having me go in Monday for an ultrasound and check-up just to rule anything else out. There's a possibility they may have to do a procedure called a Uterine Ablation to help control the bleeding......Ughhh - I'm so stressed about this!! Other than this, today is day 10 of TX #2 and I'm feeling more fatigued this time. It's more of an on and off fatigue, but when it hits, you know it! I still can't seem to sleep more than five hours at a time at night either, maybe it has something to with the chemopause thing.Katie - I have gotten the neulasta with both treatments and I'm not sure about the neupogen, but my understanding is that it they both accomplish the same goal except the neupogen is shorter acting and typically causes less of the bone pain side effect of the neulasta. I don't think either of them keep your WBC's from dropping, they just keep them from dropping too low. I got my blood levels checked on day 10 after my first treatment, and won't get checks until the day of subsequent treatments. They look at that first treatment as a model for how you will react to future treatments. Then if my blood work is not what it should be right before the next treatment, I assume it would have to be postponed. Did you find out what your normal (before you started any chemo) wbc levels were? The 3.2 might be what is closer to a normal level for you.
Best -
Sherrie
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Hello to everyone,
I'm on day 3 after my first tx, which took 5-1/2 hours in the chair! Premeds, taxotere, cytoxan, benadryl and herceptin, one after the other. All was great until the benadryl which wiped me out and made me feel drained, limp and tired. It improved before the herceptin was finished, and I was able to drive home, so that was good. I took 8 mg decadron the day before, 8 mg the day of, and 8 mg the day after (yesterday). I had my neulasta shot yesterday, too, and took a claritin and aleve in the morning before I went. In addition to the IV anti-nausea meds, I've taken Emend yesterday, and today, but none of the other two nausea meds they've prescribed. I have been taking Miralax since the evening before the first tx (a capful in a glass of crystal light) and no bowel problems with everything running smoothly - maybe just a slight touch of gas but nothing major at all. The most annoying side effects I've had are: an almost constant headache since I started taking the decadron, and yesterday morning (the morning after my first tx) my face and chest were very red but it faded by the afternoon. This morning, it's slightly red again but not like yesterday. So that's been my experience so far, and not bad at all considering...knock on wood.
Oh, yeah, something else weird - my urine smells funny - does anyone else have that? If so, when does it go away?
Good wishes for all,
Teena
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Hi Teena -
You and I are on the same schedule. I had my first TC treatment on Thursday so today is Day 3 for me. I've actually done pretty well but yes, my urine smells really funky. Must be a side effect. I'm HER negative so you had more meds than I did. I'm feeling tired but overall not too bad ... definitely not as bad as I expected.
I see you have long hair too ... I don't know why but I'm having an emotionally hard time dealing with the impending hair loss. I've already got a wig but am struggling with just shaving it off now versus waiting for it to fall out versus cutting and donating to Locks of Love. I don't know. I understand it takes 10 - 14 days to fall out. I think I'm holding out hope that everyone's wrong and it won't fall out ... I don't know.
Anyway, nice to meet you and I hope your future treatments go well.
Page from San Diego
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Hi all,
I'm posting for the first time. I've been reading all of your postings and finding them so helpful I decided to chime in. My first TC tx was on 9/18, next one will be on 10/9. Had a pretty rough time with first treatment and my oncs are reducing my dose for next one. 1st time had terrible bone pain, headaches, constipation. By day 5 I was very weak and ached everywhere. Thanks to all of you I remembered reading a few posts about dehydration. I was drinking almost as much as I was supposed to, and urinating. But by Day 7 I told my husband we needed to go to the hospital. I was severely dehydrated, very low blood pressure and had the worst headache I've ever had. They gave me IV fluids for the day, took blood and told me my WBC were close to zero. I went home and had terrible flu like symptoms all night, and found I had a 102.5 fever in the morning. I was hospitalized for two days on antibiotics, but luckily my WBCs increased quickly. Since then I've felt pretty well, decent appetite, moderate headaches. Lost my hair on Day 14 (so helpful that everyone's information prepared me for that). Crossing my fingers that tx #2 is easier all the way around.
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Hi Pageroo,
I'm new to this, but just read your posting and thought I'd share my experience this week. I was also having a hard time with the hair loss. My 12 year old daughter even commented that maybe I'd be the 1% who don't lose their hair (although my onc told me it was a definite). After reading lots of postings, I decided to cut it short on Day 12. It was a cute pixie cut and I liked it more than I thought I would. This was really helpful to picture how it will be when it comes back in. On Day 13 it started falling out, and by Day 14 it was all over my pillow when I woke up and coming out in clumps. Just like everyone says, that made it clear to me that I didn't want that experience to drag on, so I shaved it on Day 15. The shaving was not as bad as I thought it would be. The last couple of days of wearing my wig out in public have been a bit weird, but I'm sure this will get easier and already it is not as horrible as I thought it would be weeks ago. Good luck getting through this.
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Teena, the urine smell is the taxotere. Goes away around day 3 or 4. Glad you're having mild SEs so far.
Diana, good to hear you're doing better. There is no 1% that don't lose their hair with taxotere. Everyone loses quite a bit, and some lose all. I haven't lost all of it (done with tx), maybe 80%, and not body hair. --Lani
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Hi Page, glad to hear you're feeling reasonably okay; me too so far. The hair thing is hard to deal with. I'm completely with you on that one. And my husband loves my hair and he is having a hard time with me cutting it - he also wants me to see if it doesn't fall out. I think,for me, I'd like to cut it short before it falls out because it seems less traumatic, and donate it, so we'll see. I have a couple of stylists who've volunteered to fix it up for me if I choose, so I guess I've got a week or two to decide. Let's keep in touch and compare notes as we go through this.
Lani, thanks for the info about the urine smell. I'll be looking forward to that going away! Has your hair started to grow back? I'm already thinking about that, and how long it will take to grow. And I'm hoping it's as nice as it is now...
Teena
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Pageroo & Diane ~
Am on Rd 1, Day 8, hair still here. My problem is I see it gone and it's still here. I have all these great hats and am all ready. Well I guess it will go very soon. I can't see shaving it but I suppose it gets all tufty. I am actually afraid to go out without a hat because I'm afraid some of it will just fall out in front of people. But I have.
I have felt great the past 3 days. Absolutely normal which is quite wonderful in contrast.
It is so good to compare notes with you gals.
Anybody stop taking their Vitamin C? I take a multivitamin plus some things and my onco said a multi was fine. But I heard elsewhere that C is too good for the tumor cells. What do you all think?
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Unique, you have a few more days before you see any hair, and it comes out a little every day, not real fast.
Teena, mine hasn't started to grow back because I'm only two weeks out from my last infusion. I don't expect to see more peach fuzz for a few more weeks at least. Apparently that varies quite a bit, too. My head sure gets cold at night, now, and a scarf isn't enough to keep it warm on cold mornings when I go out.
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Hello Page, It's 6 months since I lost my hair but I doubt I'll ever forget. It was Tues., day 14 of tx #1. I hadn't noticed any hair on my pillow - not that I checked but in the shower, was shocked to see a handful in my hands and feel some hair sliding down my back. Each of the next 3 days was the same. By Friday, there was noticeable shedding on my clothes. It was actually a relief to have my head buzzed (left 1/2 inch) on Sat. I just couldn't face the inevitable until that Sat but dealing with the mess was over. It's just such an obvious sign of what we're going through. Now, I'm the other side and trying to decide when to go wigless. It's getting thicker but not longer - yet. It still seems like this will never end but I'm obviously getting closer and so will you.
I still don't enjoy wearing the wig but now that it's so chilly in the northeast, it feels good to put it on. I'll be waiting to hear how you're doing.
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Teena,
My hair hasn't started to grow back yet either and I'm 38 days past my last treatment (YEAH!). What is growing is the 20% or so hairs that never fell out, and they're about a 1/2" long and making me look like a plucked chicken again. I may have to shave just to even things up a bit when the new hair starts. My hair grows slowly so I suspect it's going to be quite a while. In the meantime I mostly wear the very short pixie wig depicted in my picture. I used to have long hair (long and fine, with lots of split ends and bleach damage--nothing beautiful like yours, Teena, and yet it still hurt to lose it, skanky though it was)
It bothers me a little bit that I am getting so many compliments on the short hair wig. I've had perfect strangers stop me and ask me where I get my hair cut!! Having long hair was sort of an important part of my identity, but now even my kids are telling me I look better (and younger) with it short. We'll see. I've always associated short hair with being ancient-beyond-belief, and I'm not quite ready to go there. That aging hippy thing isn't about to give it up I guess.
Here, once again, is the photographic study of hair growth done by one of our bc survivors. It's my understanding she took one picture each week, and so it's about one year from the beginning to the end of the study. I would say that I'm about at square 2 or 3:
http://www.karinstack.com/images/hair/HS_grid.jpg
Now my big news is that on Thursday my Onco officially pronounced me "graduated" from chemo. My blood counts were all almost back to normal and require no intervention. I was given a Rx for Femara--which I have sent away to the mail order place (to save a few bucks, and also to delay the inevitable). We're leaving on Weds for another little getaway--this time to Sedona, and I think I would just as soon put off struggles with new medications and side effects until we get back. Hopefully, it won't be a big hoo haw, though the Femara thread is a little concerning.
My other news is that I joined a gym and got signed on for four sessions with a personal trainer, starting next week. This is huge for me since I am the ultimate couch potato and have never done any kind of exercise program ever. I considered various options, but decided it would work best for me to get away from the house to do this. I actually went to the gym yesterday (I understand you have to go for it to do any good) and spent 30 minutes there on an actual treadmill (walking a total of 1.75 miles). It's not one of those gyms where everyone is 22 and gorgeous and all dolled up. I noticed a lot of older people and people--like me--who aren't exactly fit looking. It's a huge place and there doesn't seem to be much competition for the machines during the day, so I'm getting acclimatized to it and telling myself that--nerd that I am--I can do this.
Now, if I could just get disciplined and back into practicing my fiddle on a daily basis!
Cheers!
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Gals ~
Bought two more scarves and one fiberfill boobie tonight.
Feel fine. Kind of in a waiting pattern for the next round I guess.
Tomorrow guess I will sew in some prosthetic pockets.
Saw the karinstack hair growth study - WOW - I guess I didn't realize it would take this long for the hair to return.
Huh. Guess I am not in a hurry to get a wig yet. I have some hats and scarves.
What did you gals end up with in terms of hat/scarf/wig wear?
What did you buy and what did you end up wearing the most?
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I started losing my hair on day 10 of my first chemo and had to shave it by day 12 because it was coming out in hanks on my shoulders. Could it have happened earlier for me because I had such a horrible reaction to my first chemo? White counts and neutrophils were zero by day 5 in spite of neulasta. I bought two wigs and a lot of those beanie type hats and I dress them up by tying long rectangular scarves around my head. I bought one scarf big enough to wear alone. At first I wore wigs all the time but they are so hot and scratchy and give me a headache by the end of a long day so I've been wearing the others more.
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Annie,
I sent you a PM re hats etc.
In reading your posts, I noticed you opted for mastectomy w/o recon. I did too and I'm really quite happy with that decision. It's been six months+ since my surgery. I don't know how long for you. It was a big relief to get fitted for the prosthesis. Mine (an Amoena number 4) is so comfortable, as is the bra, that I have no perception at all of anything being different. When I take the bra off at night, it feels kind of weird at first, but during the day I look and feel perfectly normal. I suspect it's easier being a person with fairly small boobs to begin with (your typical 36B trying to pretend she's a 36C). The bigger ladies have more issues.
Cheers!
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HI Sherrie 1964
My WBC before I started treatment was around 5.4. I'm taking treatment #2 this coming Wednesday, October 8th.
TNT and Lannie: I had the same urine smell. It went away by the end of the first week.
UNIQUE: Here is a web site offering information about taking antioxidant supplements while doing chemo. I have been taking them but I am going to stop now and wait until after treatment.
http://caonline.amcancersoc.org/cgi/content/full/55/5/319
Katie
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Sandra, thanks for the pictures of the hair regrowth...takes a long time, doesn't it? My hair now grows so fast, but who knows what will happen after this. Aging hippie thing I can really relate to, slightly (only slightly) embarassed to say. And good for you on the gym - I keep telling my husband we have to move around more for better health. Enjoy Sedona! I'm in Phoenix, but have never been there...we just moved here from Chicago a year ago, and haven't gotten around much yet. When we first got here, busy finding work, then my oldest son got sick and we brought him to Phoenix from Chicago so we could take care of him. Then I was diagnosed and dealing with that and my son, so no time for anything. My son passed away at the end of July from brain cancer, and that's been hard...at this rate, I figure we'll make it to the Grand Canyon near the end of 2009!
It's so helpful to know that my hair only has from 10 to 14 days before it goes...I guess it's really pretty standard, huh. Annie, let us know when....Lani, keep your head warm!
Best to all,
Teena
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HI All...
I am day 6, round 2 and have had a totally different experience this time around. I didn't get the Neulasta shot last round and ended up with virtually no WBCs, had diarrhea, mouth sores and thrush. My WBCs rebounded by my treatment on Monday. This time around I got the Nuelasta shot. So far no diarrhea, mouth sores, or thrush...just had some overwhelming fatigue on day 3 and 4. Felt good enough to go to a dinner party last night and actually had my appetite and taste buds back. I'm not sure if the Neulasta was the reason for this but I am grateful for it none the less.
On the hair front...wore my wig for the first time last night. I felt I had to for this party. I was more self conscious in the wig then I am in my hats and scarves. Most of the people at the party thought it was my hair so that's a good thing. My family prefers the hats and scarves....particularly my NO HAIR DAY hat.
Slortiz...kudos to you for getting to the gym. It will do wonders for you mentally as well as physically. Not to mention it's a proactive measure to keep this damn BC away.
Teena...so sorry to hear your story. So sorry about your son. I can't imagine dealing with a sick child and BC at the same time. I'm sending some positive energy your way. Hang tough.
L
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HI Lili
I'm glad that treatment #2 went better with Neulasta. Mine is Wednesday and I will be getting Neulasta shot the day after this time. Last time I took Neupogen but not for long enough.
Slortiz: Good luck at the gym! I want to start shortly. I heard there is as much as a 30% benefit for those that work out regularly.
Teena: I am so sorry to hear about your son. This must be the worst kind of pain anyone could ever bear in life and you are so brave.
Sandra: I was in Sedona in 2004 for a few days and loved it!! It has to be one of the most beautiful places in the country. Enjoy yourself.
Katie
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Thanks for the good wishes. After watching my son fight with such dignity, courage and grace, there isn't anything I can't do following his example.
Lili, glad to hear your treatment went well, and wishing Katie the best on Wednesday.
I have a script for a wig but not keen on getting it fitted - does anyone know of any online merchants that accept the insurance?
Best to all,
Teena
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Teena,
I had no idea what you have been through the past year and cannot even imagine having to cope with moving (major in itself), the illness and death of a son, and then your own bout with cancer too all in one year?. No time to even grieve. A truck runs over you and then another truck. Our best friends lost their son to brain cancer when he was 26. Devastating--and yet they somehow picked themselves up and moved on from there. A new home, new friends. You just have to, I guess. They had other children to consider--and then--in time--grandchildren to love, but it is a loss that never goes away. They had every right to be bitter, but instead they just sort of opened their arms to life and to other people in need. I don't know how they do that but they do.
Hugs,
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Hello everyone, wow Teena I don't know what to say, I am very sorry also. You are a very strong and positive person. You will get through this! I am now about 16 days out since my last treatment. I am feeling pretty good, thank God! but I have to get ready for radiation, another challenge. I just have to go in with a positve attitude. I am a little scared, especially since it will be on my left side. I am going to take a vacation soon also, I want to go to a Bed and Breakfast near Monterey, CA called Seal Cove Inn. Its so beautiful and serene. Sandra have fun in Sedona, I 've never been there either. Oh on the wigs it's getting cooler now, so my wigs feel a lot better, they keep your head warm.
Audrey
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Teena,
It's difficult to put into words what I felt when I read your post. I'm so sorry for the loss of your son. Good for you for keeping on and doing what you have to do in spite of everything else. I just finished up my second treatment of TC and doing well except for the effects of chemopause. You have come to the right place for support!
Sandra - congrats again on finishing up and taking off to Sedona! Have a great time. I hear it's beautiful there.
Amann - I've been thinking about to upcoming rads too and am also nervous; left side for me too. I was reading something the other day about IMRT. It's supposed to be a more precise way of delivering the rad beams. I don't think it's offered everywhere. Have you heard anything about this?
Katie so it sounds like your WBC's were working there way back to your normal level?? That's good. Good thoughts going your way for treatment #2 on the 6th!
Best,
Sherrie
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Audrey, thanks. I will pray that your radiation goes well and that your mind is eased. Monterey sounds beautiful and a great idea...I remember the first time I drove over the Golden Gate north to Marin County, in a Mustang convertible...that seems like a LONG time ago...! But so impressive, and the ocean is so healing, isn't it?
I think of my son all the time and know that I will see him again one day. I picture him with my mom and dad, other relatives and friends, his dog and our pets that have passed, and somehow don't feel like he's really gone, only somewhere else for a while until we're all together again. Shane always looked forward and never backward...so I know that wherever his life force is, it's expanding to new places for him and the rest of us will just have to catch up.
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