Starting Chemo Feb 2010?

Donna - I am part of a clinical trial for my chemo. I was assured that no placebos would be used. There were three randomized arms.

1. Taxotere, Adriamycin & Cytoxan

2. Taxotere & Cytoxan (this is the one I got)

3. Taxotere, Cytoxan & Activan (new drug)

I have the option to back out at any time, but have been sticking with it. I didn't know until maybe a week before which arm I drew. My onc was very confident about each arm so I didn't have a problem any of them.

I'm kind a glad I didn't get the Adriamycin because I'd heard the stories about the possible heart problems. Hope this is information that will help.

Good weekend and no SE's to everyone! 

Crystal 

Hi all. I've been so busy catching up on work during my "good" week and a half that I haven't checked in. A few thoughts/responses:

Roso, Hang in there, wedding season is tough, but take heart about your treatment-- I have the exact same diagnosis and treatment as you, and our odds are very good. You WILL get your life back.

Burley, YES, please, talk to your doc about depression and meds. You can get help with that. And don't worry about it "driving everybody crazy"-- take care of yourself and don't worry about them. 

lbreedl, I opted for lumpectomy because: A) Mastectomy scared the daylights out of me, both because of photos I'd seen and the surgery recovery; There's no breast cancer (or any internal cancer) in my family); C) I had great confidence in my surgeon, who leans toward breast conservation and is involved in that movement at UCLA; and D) even though she had to take out a lot of tissue, I had it to spare, and was fine with getting a reduction on both sides (the right side was just to balance me out). I'm happy with my decision so far. 

Vmarie, aren't you doing the Avastin trial like me? That causes bleeding. I have a permanent but minor nosebleed for about two weeks, and have had some more alarming bleeding elsewhere, but it's better now.

I'm headed in for #5 of TCH plus Avastin on Tuesday. Only two left! Round 4 was harder in terms of fatigue and intestinal discomfort, but other things were better-- I took Prevacid for about a week or so, and it stopped the heartburn that nailed me after #3. The second half of my 3-week cycle has been good-- great energy, getting lots of work done, exercising almost every day.

Love to keep up while we go through rads, but I don't start that until the beginning of July. Chemo through May, then June is recovery month. Plus I stay on Herceptin/Avastin for a long time.

My head looks freakish now-- weird baby hair growing in and other parts balder. I look like Chuckie in the horror movie! But brows and lashes are still there, although brows are much thinner-- I'm guessing they'll be pretty much gone by the end, but at least I've kept them much longer than expected.

I'm really worried about the Tamoxifen weight gain, although I really worried about the chemo weight gain so many women complained about, and I'm down 10 pounds, so maybe it won't be so bad. I'm hoping exercise can keep it off. Overweight is an issue for BC risk, and I was overweight but am down 30 pounds to a much healthier weight and want to keep it that way! What's riskier: No Tamoxifen and a lower body weight, or Tamoxifen and a higher weight? To discuss with my onc after chemo is done..... 

February Sisters,

Our bodies have been or are still being filled with strong chemo chemicals along with the strong medicines we take to ward off side effects from the chemo chemicals.  Is it any wonder our poor bodies and minds are being stretched to the limit????   I keep thinking, we can do it!!!   But, it is not fun.   I am tired of feeling yucky!!!    People who comment negatively about our appearance are very rude and deserved to be ignored!!!!   

When I look in my mirror now I look like one of my most terrible nightmares!!   I think that is what freaks out people.   We have the dreaded cancer and they can't deal with it maybe happening to them too.

But hey, with my double foobs, cute clothes, a ton of well placed make up, and stylish wigs, people say "You look good!"   Direct quotes!!!   "You must not be too sick!!!"  Oy!  I am!!!! 

Thank you for being here to support me and others as we try to get though this chemo journey and beyond.

Morning, everyone - is anyone having really annoying neuropathy in their feet?  I could barely walk last night and I'm concerned because I have two more treatments to go - not sure how my feet will make out with additional chemo.  Just curious to see how others are dealing with this.  Mo

First of all, I would like to apologize for my lumpectomy vs mastectomy rant. I was feeling sorry for myself and my misshapen body, but realize that I must've sounded like a complete insensitive bitch...by no means did I mean to make less of all you women undergoing TE's and recon and and the uncertainties of uni vs bilat,etc.   It was my decision to go with the lumpectomy vs the mastectomy, and seriously I really didn't consider any other option. I do consider myself lucky that I won't need further surgery (I hope) unless it is elective. I still do have both my breasts, although not in the way they formally were, but at least I do have them. Anyway, sorry I was such a whiner about it all.

Mo--YES the neuropathy in my feet is awful!! I've actually lost my balance a few times and kind of fallen. My fingers are numb too but not as bad. And I think I have another cold so now my ears are clogged and I can't hear either.So I can't feel anything (except the achy bone pain of course), hear anything, taste anything, or see anything since I'm not wearing my contacts.

And EEEEK....I am losing my eyelashes....and with only one more treatment to go dammit, I  guess the Taxol did them in. I have a few sparse ones on the bottom, and now a very thin amount on top which I am sure will fall out soon enough. Damn I was really hoping I could hang onto them. Oh well, still have my fake nails though. Hope they don't suddenly take a hike.

Burley--some people are just stupid I guess. I don't know why they feel the need to point out what we already know. My soon-to-be-ex husband is real good at pointing out how awful I look, although he does it with sad and compassionate air. Thank you, but you really don't have to point out the obvious to me. Guess thats why he's soon to be my ex.  

I started out with thick eyebrows, so the thin ones I have now still look o.k.  But the eyelashes!  It's a joke trying to put mascara on.  Each time I take my make up off I lose some more...so I try to only wear makeup on the days I have to work (which are very few right now.)  With 4 treatments to go, I'm guessing they're all going to fall out.  I had a friend get me some Latisse (the eyelash growing stuff on the Brooke Shield's commercial)--I really can't tell if it's working or not.  I was just desperate to keep some of them.

I am lucky that my husband doesnt care what I look like-he prefers me bald to wearing my wig for some reason. ???  I have these 1/4 inch fine white hairs all over my head-not attractive.  I have a feeling my hair is going to grow back in all gray like my mother's did-ugh.  I met a woman at my last PS appointment, and her hair grew back in all gray too-and she was just a couple years older than me.  She dyed it as soon as it was long enough-which will be the same for me.

So I start Taxotere in 2 weeks, and I have to deal with neuropathy too?  I'm dizzy enough as it is!  I stumble around and catch myself with the walls all the time.  This should be interesting.

Kim:  There was an interesting article in today's NY Times about people using latisse without getting it from a doc--changes to eye color, discoloration above and below the eye, etc.  Talk to your doc, ok? 

I've got the wispy white hairs growing on my head, too.  And my DH says he prefers how I look without the wig.  He is going to have to get used to bald plus shirtless once I get going on rads!

I was worried about possible neuropathy, since I already have balance issues, but it never happened.  I guess it has to do with the number of tx.  I had 4.  I feel for folks going through that, and am hoping that SE will be minimal.

Even tho I've finished chemo, those of you plugging away have not been left behind in my thoughts.  Your support and willingness to share your experiences helped me immensely, and I know there are others who feel the same.  Bless you all.

I get to keep mine for the rest of my life..   and it has never stopped hurting!! One Onc suggested I get it re-done.. yeah right.. go through another surgery...  I can't even sleep on my port side.. or hold the baby.. still.. I'd say the port is one of the worst things for me!!

Hi all!  I'm on my way to my 5th tx in a few minutes. It took me a week to bounce back last time (was 3-4 days before). 

Hope all that are having tx today have little or no SEs. I do hope that this thread continues. I may not post much be I do enjoy reading what others post. My questions are usually answered without having to ask. For that I thank all of you for being here.

Hi ladies:

One more round of Taxol and I will be done with chemo.  I thought I would share with you some of my experience.

Chemotherapy began 2/2, 4 rounds of dose dense AC and 4 rounds of Taxol every two weeks.  Last treatment is on 5/11.

Recap of experience:

AC:

Major side effects:  nauseated, chills, vomit, lost of appetite, stuffiness in chest, dizziness (most likely from all the medications), and flushing kicked in the third day after chemo and lasted about 5 days.  The first round was the toughest. 

Hair loss:  scalp started to hurt the 10^th day after the 1^st dose of AC.  Clumps of hair started to fall out on day 12^th. 

 What works?

Antiemetics:  Ativan and Comprezine didn't work, Zofran worked somewhat to stop the vomiting but caused extreme dizziness.  The dr. finally got the insurance to approve Emend which controlled the vomiting but didn't take away the nausea.  She then had me combine Emend with Zofran and steroid (in addition to what they put in with the chemo drug) and sure enough that took care of it. 

Prilosec 20 mg: at bed time to alleviate heart burn and help lighten the stuffiness in the chest.

Water:  Drink, drink, drink tons of water.  It really helped alleviate the side effects.

Food:  I ate whatever I could tolerate...mostly refined carbs, cooked-to-death veggies, oranges and apple juice.  I had to drink Ensure after the 1^st round of AC because I couldn't hold anything solid down.  The strangest thing was that while I never felt hungry throughout the AC treatments, I was constantly craving for food...go figure.

Taxol: 

Major side effects:  Compared to AC, Taxol has been a walk in the park.  The only side effects were the joint and bone pain (mostly in the knees and hips and worse when lying down) which usually kicked in the 3^rd day after chemo and lasted about 4-5 days.  The bone pain seemed to be worse with the Neulasta shot.  After the first dosage of Taxol, my WBC shot up to 35.1 (normal is 4.1-10.9) so I didn't need the Neulasta shot and the pain level during those two weeks was very tolerable.  Sleeplessness the night after chemo because of the steroid.  I requested the dr. to cut the steroid dosage in half (from 40 ml to 20 ml) after the first round but it still didn't help.  So far I haven't experienced neuropathy although I still have one more to go next Tuesday. 

What works?

Stopped taking all the antiemetics after the 1^st round of Taxol and that helped with the light-headedness.  I only took Aleve for the joint/bone pain and Prilosec at bed time when I felt the elephant was creeping up in my chest again.  Walk even if you don't feel like it.  Mild exercise seemed to help ease the pain. 

While I'm not looking forward to 5 years of AI, I am excited about concluding this part of the journey.  The dr. says she will either put me on Arimadex or Femara and that the common side effects from the AI are similar to Taxol's.  If that's the case, I am okay with it.  I've learned to take one day at a time, not to worry prematurely and live life to the fullest.

My thoughts and prayers are with you sisters. 

Marie

hi ladies,

I'm on my 5th day from my 4th carboplatin/taxotere treatment. Little more nausea this time around but nothing too bad; my not wanting to take anti-nausea meds until I had to probably doesn' help, but ativan became my savior this time around.  I can't say things are worse, just a little different - tiny more nausea, less bone pain. If it ain't one thing...  Was able to go out and have a pre-cinqo de mayo mexican meal tonight so that's something!  SEs are ok. Am getting tired, mentally and physically, of being tired though. Trying not to let my head (attitude) be my worse side effect but it's sure hard - wanting to jump up and go golfing or have a nice lunch with friends or go somewhere without having to think about SEs in back of your mind all the time   It's getting borrringgg already, and I haven' even had surgery and radiation yet. Oyy this is going to be a long summer.

faithfulc--glad the tongue thing went away....good job. That Biotene has helped me thru this, thats for sure.

MW943--you have the same regiment (and start and end dates) as I.  Except our side effects have been different. The Taxol for me has been brutal, the bone pain is still present and I am over a week post chemo. The neuropathy has been even worse, sometimes I feel as though my entire body is numb. For me the A/C combo was not as bad. I had very little nausea, I guess the Emend worked well there. Now I have an awful head cold.  Well, I guess its a cold, I thought I was having one continueous hot flash the other day at work but when I got home and took my temp, I had a fever of 100.8. First time I have had a fever thru any of this. It was less than 101 so I didn't call the oncs office. But I feel like I am in some kind of bubble, very strange feeling. No real fever since then, maybe 99.3. But I just feel like total crap, my throat is so sore I can hardly swallow, and the hair ball feeling is worse if that is possible. This has to be the worst I have felt since I started all this. I hope I can get my final round of chemo on the 10th.  With the end so close, I would hate to have anything get in the way.  God I just want this over with and I want to feel better. The only good thing is I have no appetite, and so far have lost around 15 lbs (yay).  Little victories haha. 

Well Happy Cinqo de Mayo, girls, unfortunately no Margaritas for me this year. Hope you all have a great day with little or no SE's.

I will say, I am lucky that my brother insists on bringing dinner over every Wednesday.  He has done it since surgery.  I think it's his way of keeping on top of me.  We've always been close, but not the type to talk every week--so this has been a new experience.  He usually surprises us, so the kids look forward to eating something different (than mom makes) once a week.

There's one other friend who sends me cards about twice a month...just out of the blue, I'll get a card to tell me to stay positive/on track.  That's really nice.  Otherwise, the only time someone asks about me is usually on Facebook after I post my status.

I know life goes on for everyone, it just seems like mine isn't right now.  I'm in more of a negative phase than a positive-ugh!  Hopefully I'll snap out of it soon.

Burly, what a cool coincidence! My professor brings by a meal for me and my husband every Weds. She is incredible and told me that under no circumstances could I keep her away! She took care of her grandmother during the final stages of her cancer and knows what we are going through. (Her mom and dad died many years ago, so it was left up to her to care for her elderly grandmother.)

It's amazing, but she has been more dedicated and such than some of my own family! Oh well. Sometimes people who have never gone through this don't know what to do or how they are supposed to react or respond.

My youngest brother can't be around me at all, especially  now that I have no hair. His wife told me that he is scared to death that I am going to die, like tomorrow.

But this is something that goes back to our childhood. When my parents divorced, he was only about 4 or 5. I was in middle school. He went to school with me every day and clung to me -- going with me through all my classes and sitting next to me in class. 

I would also often find him asleep on the floor at the end of my bed. So I think he's sort of reverting and is terrified to lose me. He just always took for granted that I would be here for him. Yes, I know, he's in his 40s now, he should be dealing with it better.