Anyone on just Taxotere and Cytoxan?
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We can do this! Thank you ladies who are out from tx. These SE's are a bunch of crap, but we are women, we've dealt with loads of crap our entire lives.
I'm feeling better today. Not meself, but not like I wanna be someone else either LOL My guts ache. My ribs are pretty much screaming at me too, but this will pass, I know it. "chemical peel from the inside out" I love that! It's so true. I'm 38 on the outside, but now since chemo, I'm like a 2 yr old on the inside.........maybe? Not likely LOL, but ok, the inner wrinkles just melt away. Maybe that's why everything is sliding right out my colon, it's silky smooth!
The onc is going to lower my dosage next time. She knows I'm a trooper and I've dealt with worse SE's before, but I'm also hypersensitive to medication......hence why all the stuff that normally happens on tx 5 or 6 is happening to me now at tx 2.
I'm pretty sure I've swallowed a grapefruit of pillow in my sleep and it's lodged right about my sternum.
blah, I'm better dammit! Quit complaining Pamela and just hike up your big girl pants!
Ok, Pam out......gonna go make cookies.
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jko~ yes Uncle Fester! LOL, I look at pics pre chemo and think omg look at me now. The eyebrow fairy came to take mine away the night of my last chemo 6 in all, but so far I still have eyelashes, I hear they will go to, but here is to hoping. I too am doing the wait and see game with neuropathy. I sure hope it goes away, but I think how severe it was I will be stuck with it to a point forever. UGG
echosalvage~ OMG scummy aquarium! That is the best description yet! I have/had everything you mentioned, except the nails lifting. I never did have to get the shot though. I guess I am lucky with that. I drop everything! I pick up something and bam it hits the floor. I am a danger in the kitchen. I am right handed and I have lymphedema in my right hand along with the neuropathy. So cooking is a real challenge.
Pam~ Yep we are stronger than we know. We have to be! Complain all you want! That is what we are here for, to support each other.
As far as our dosage go. I am sorry to say I dont buy it. I think they lie to us also. I know that a lot of our TXs are kept kinda secret. Like when I was told they give us meds to cause amnesia by my nurse practitioner, then I asked a nurse what it was called and she told me they dont give us anything like that. Also I believe they give us double dose in the middle of TX, and dont tell us. You can think I am being paranoid, but it makes sense to me. If you notice most of us just about lose it in the middle of TX our SEs get so bad, then seem to leval out some. IDK if they do it for everyone but most of us I think so. During one of my TXs I asked the nurse as she was hooking up yet another bag, what am I getting now? She responded "do you really want to know?", I told her nope. Dont get me wrong, I think it is mostly based on height and weight, but not entirely. JMHO
Hugs to all! You can do it!
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Now I am really afraid. I had ACx4 four years ago. I will start TCx6 at the end of October. Had BMx with tissue expanders first week of September. So I am not looking forward to the SE's AND expander fills!
But I should feel lucky because at least there is something that can still be done for my cancer. So I will try to bear it and put off going to Bora Bora.
Is anyone else going through expander fills and TC at the same time?
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Adnerb - I went through T/C x 4 and fills at the same time (Finished T/C on Sept 30th). I schedule the fills for every three weeks, the week before T/C so that If I had SE's from chemo, I would be over the hump by the time I had my fill. I was blessed with mild SE's that only lasted for 3-5 days after tx. My onc was surprised that I choose to have fills during chemo but, for me, it worked. I always took a Tylenol or alleve immediately after each fill and for the first few days after and rarely had any issues. I didn't not experience alot of discomfort until the last fill, I think my body is just DONE with everything...make sure you tell your PS if it is too much.
I will be having my exchange surgery on Nov 12th...I see my PS on the 19th for pre-op appointment and overfill. I am probably not going to have an overfill at my pre op since I cannot get relief from the constant ache in my foobs and muscle pain.
If you have any more questions, just let me know...I'd be happy to answer if I can.
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Pamela - It pains me to hear about your GI problems. Before chemo I thought for sure I would have GI trouble as a SE since I have had a very sensitive system my whole life. A nutritionist recommended L-Glutamine. Have you tried this?? It is a powder that I mix, 10 grams with 8 oz water, twice a day and then gargle, swish and swallow the whole glass of water. I do this first thing in the morn and last at night starting 2 days before chemo thru day 7 after TX. It helps prevent mouth sores and protects your GI tract from the chemo damage. I have had two TX so far and no mouth sores/irritations and no GI trouble. Thank god my system is functionally really well. I hope this helps. Btw you can get L-glut at whole foods or any health food/vitamin store.
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echosalvaje - you had brick in the throat acid reflux? So that's what I have? I've been having that lately and didn't know what it was - it's acid reflux? After you wrote about it, I googled it and found - Laryngopharyngeal reflux. Not that I want to have that, but it's nice to know what it might be. Thank you so much for mentioning it. I had a weird reaction between my 3rd and 4th treatments where I had random itching and rashing and I also had that brick in the throat sensation and pain farther down, but no heartburn. I thought it was part of an allergic reaction where my esophagus was swelling or something. But now that I don't have the random itching, but I've started having that brick in the throat thing again, I had no idea what it could be. Acid reflux without heartburn. I had my last tx on 9/14, so I don't know if I can blame chemo unless it is a lingering side effect. I hope it doesn't last.
This is why it's so great that we can come here and tell our stories and read about others' - you never know who you might help or what help you might receive!
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I have finished with my TC tx and had absolutely no GI problems.....due to the L-Glutamine I was taking. I mixed 8 gms of powder with a nectar and had no problem ingesting it. I used V-8 in the morning and a pear nectar in the afternoon. When the powder ran out I bought some capsules and continued taking them. I did all of it throughout the whole treatment. The only days I missed were a few after infusion when I just couldn't even think about drinking any of the juices. Give it a try to alleviate the upper GI problems.....worked for me!
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I'm going to pick some up today....Thanks so much girls
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I read that Alpha Lipolic Acid is also good, especially for neuropathy. I have rheumatoid arthritis so my feet are already a problem so I've been taking that and plan to pick up L Glutamine as well. I did read that some oncologists advise not taking these 2 supplements the day before, day of and 2 days after tx.
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Hello Ladies-
I've been lurking around this site for awhile & have received a tremendous amount of info. from everyone! I'm due for my 2nd T & C on Oct. 16th. I've had many of the s/e listed & am not liking it at all. It seems everything will become worse as we go on?? For those of you on 2 & beyond & working...did you find yourself needing to take more time off work? So far, I've needed to take one day of week one (fatigue) & one day of week 2 (low WBC's-feeling sick), got on some ABT's & thought I'd be feeling a little better but today feel nauseated (again). Yesterday I went food shopping & realized I forgot my wallet just as I was getting ready to check out - OMG what is happening to the memory-this seems to be really bad for me. I'm having trouble remembering things & concentrating extremely bad! Today hubby is shaving the head & I plan to wear a wig to work tomorrow for the 1st time (I work at an Elementary school), some know...many don't...feeling very anxious about it now that its come down to the wire & wondering why I just didn't tell everyone so I won't have to explain it so much tomorrow. Thanks for reading! I hope everyone wakes up feeling good today.
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Brenda, I got fills every week during treatment, except week of chemo. I slowed down to 50 cc's each fill, from 100, since the chemo meant I had to postpone surgery. I never needed any Neulasta shots, and had very minimal side effects - just fatigue and funny taste buds, plus the muscle aches. I managed with just tylenol and occassionally benadryl to help me sleep. The insomnia was thanks to the steroids, so I only needed the benadryl for 2 days each cycle. I am 8 weeks out from last treatment and still have chemopause symptoms, but I never lost my eyelashes or eyebrows. A little of my hair hung on, but it's coming back fast already. I have been scarfless for about a week - I never wore a wig. I had my exchange surgery 2 weeks ago, and all seems well. Good luck - if you choose to do fills during treatment just pay attention to how you feel.
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Pamelajo - also a probiotic. I take Jarrow brand acidopholis. It helps tremendously with acid reflux and any other tummy issues.
I hope everyone has a good week with no complications, few SEs and lots of rest & fluids.
Those of you going to a job everyday or home with your children are my heroes! I'm without kids and working from home through treatment.
best,
Lottie
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Lottie -- thanks for the picture of Emmy Lou. Wow, is she gorgeous or what? She's been gray for a long time, I admire her for just rockin' the gray and not coloring it otherwise. Thanks for sharing! I'm glad you had a good time.
Marie 111 -- my onc told me most of her patients gain weight with chemo. So I wouldn't worry. Do what you can to exercise and get your rest. You can deal with that later and you will lose the weight. Right now just take care of yourself and eat healthfully. I couldn't wear a whole lot of clothes during chemo b/c nothing really fit w/ the weight gain. But it's getting better. Just take care of yourself.
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Lilin Texas -- I had 6 rounds of T/C and it didn't necessarily get worse for me. The first was the worst. Then you know what to expect and that gets easier. You learn what works in terms of food and Colace/Metamucil, etc. My se's were minimal compared to alot of people. But I honestly think for me it got easier. My 5th was a little harder for some reason, but the 6th went well. Just eat right, get sleep and take care. I took sleeping pills occasionally to help me sleep at night -- never have before -- but again, learn what works for you. If ever there was a time in your life to take extra good care, it is now.
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LilinTexas- I missed one day first round and two 2nd round. I had alot of prob lems with focusing and the bone pain made me sooo cranky! So I took the week after treatment off and mostly slept. It made such a difference in how I felt I wish I would've done it all along. Don't push - your body has enough to deal with and you need as much rest as you can get! I don't know know where you are located- I live in the McKinney area N of Dallas. Baylor Planao has lots of great support...if you are in this area let me know and I will get you the info. Sending Prayers your way!! Christi
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Fluteplayer -- if they give you steroids with the chemo that can keep you up (I know I felt like I was on speed when I was getting steroids for three days.., then I would crash on day 4)
Cheers,
Lilah
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I love my steroid glow, I really really do.
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I am on this regimen and I had my 2nd treatment Wed. It was traumatic to know my hair was going to fall out, so I had my daughter shave my head. Now, it doesn't bother me at all. I've totally moved on. I'm having issues with my eyes though, figure it's the Taxotere..will be talking to my Dr. about it.
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Hi all,
Just finished tx#2. Faired pretty well through the first one and hope this next one will be similiar. Main probelms were fatigue leading to crankiness, some lower gi upset, and some metalic mouth. I was surprised that I still have hair! I cut it to about 1 inch before tx#1. Its definately thining and I think it will be gone in the next day or two - one way or another.
I asked my doc today about how they figure out the dosage for the T/C. He said it it based on height and weight and stays the same over the coarse of the tx. The are aiming for a cure, so they do not want to decrease the doses. If you gain over 10% of your body weight they may increase the dose. If you are morbidly obease they may decrease the dose. The number of treatments is determined by the charicteristics of your tumor or severity of disease. My treatment consists of taxotere 135mg and cytoxan 1090, 4 treatments - I'm about 5'5" and weight 160#. Don't know if this info is helpful, but there it is.
Best of luck to everyone on this journey.
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Tenacious_P- Congrats on being half way done! And, thanks for the info on dosage.
I go for #3 in about an hour and DREADING it!!! #2 was harder than #1 for me, and I'm afraid of what this one will bring. Everyone keeps saying after this I will only have 1 more and how wonderful it is. I agree it's wonderful, however, getting through "just one more" seems like such a huge feat for me right now. I know they say it with good intentions, maybe I'm just grumpy!!!
Revricki- Good luck tomorrow!!!! I'll be thinking about you! By the way, is your period lasting FOREVER? Mine won't seem to go away- annoying!!!!
Everyone else-- Thank you all for posting so much- this website really gets me thru!!!
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Hello All
I haven't posted in awhile but promised in the beginning to share my journey. Tx # 2 was Thursday. During tx one there was no problem. This tx I had a allergic reation to the taxotere. I started getting abdominal cramping. Than I turned a reddish purple and difficulty breathing. They stopped the tx and gave me a breathing tx. Next came 20mg of decadron IV and benadryl IV. I started having really bad heart burn so pepsid IV. It all happened pretty fast and within 1 hr back to statring the taxotere again. I finished tx with no other problems. I will now have to take 20 mg of decadron 12 hrs before tx and another 20mg 6 hrs before tx. I will also get benadryl IV before. I spent the long weekend relaxin with my daughter and am back to work today. I just wanted to share my expierence with everyone so if it happens you know that they have something for anything coming our way.
THINK POSITIVE
Catherine
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Jenw- Yes my period is long and very heavy although no cramps which is pretty amazing considering every period I've ever had has been painful, 2-3 days of cramps around the clock. It's so strange to have one without any cramps, but I'll take it!! I'm going in tomorrow for #3 and in a weird way I'm anxious to get on with it. The fear of the unknown is gone and #2 was easier than #1 so maybe #3 will be even easier or just a repeat. I know what you mean about people saying you are halfway through. I know they mean well, but it kinda bugs since I dont feel close at all to halfway. Still have recovery and radiation AND hair growth!! Until I can pass a mirror and look at myself without thinking "UGH" I'm not halfway anywhere. I will be turning 40 in March and have booked a trip to Italy. Can't wait to get on that plane, healthy and with my own hair. I dream about it when getting my infusions. Good luck today AND to everyone! Be strong!!!
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Jenw- Curious...did you have lumpectomy or mastectomy?
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More info on preventing neuropathies:
I called the oncology nurse today because I had received conflicting messages between them and the gal who ran the chemo 101 class about L-glutamine. The Onc RN told me they recommend taking L-glutamine 15mg 2x day starting 24 hours post taxotere treatment and continue for 4 days. The thought is it baths the nerve endings during the most critical time. If you develope a neuropathy they will continue with L-gluatamine 10gm daily after chemo treatments are done.
I had to call and double check the info - I am suffering a bit from chemo brain. I poo pooed the idea of chemo brain before starting treatments, but now I am a believer!
Hope the info is helpful to someone.
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Tenacious~ thanks for the info supporting our dose is based on weight and height. Did your Dr. use the word cure with you? Just curious.
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I'm starting to think they shouldn't have taken my word on how tall I am. I fudged a lil LOL
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Yipee! I survived #3! Not as bad this time, I started with the dizziness and lots of pressure in my head, so they slowed it down and was fine from then on. I did ask about dosage, and they said it is determined by height and weight. My STARTING weight was 130 and am 5'4", (have gained 12, yes I said 12 pounds since the beginning of all of this, and I just want to cry!) Anyhow, my Cytoxan dose is 1000mg, my taxotere is 125 mg.
Pattiliz- Welcome! Good for you with the hair. I go back and forth, one day I am totally ok with it, then the next I HATE it and get mad, then I get over it. But it is definitely better that it's gone than when I was waiting for it to go. Also, what issues are you having with your eyes? Mine water all the time, and have been twitching since #2. My onc said watering is normal, doesn't know about the twitching tho. Good luck to you on this crazy journey!!!
Revricki- I agree, I agree, I agree!!! And the problem is I have no idea when I'll hit half way- the whole return of the hair and radiation is a huge mystery to me! And then there's the Tamoxifen for the next five years, and there's been talk of a hysterectomy, which will change things too. And I am typically a very healthy, don't go to the doctor kind of girl, so this is all new to me. (As it is for many of us, I know). Italy sounds WONDERFUL! And it is AWESOME to have something to look forward to, something that doesn't have anything to do with cancer! Our plans aren't as exciting as Italy, but we are planning a trip to Vegas in April. Nothing like Vegas to take away all worries, right!? To answer your question, I had a lumpectomy. My tumor was right under my nipple, so they had to take half of that, and my breast is shaped more like a football than a breast now, but you can't tell under a shirt,and I can still wear a normal swimsuit and everything, so i feel lucky. We went back and forth quite a bit in deciding between lumpectomy and mastectomy, but all doc's felt that a lumpectomy would bring the same results as a mastectomy, so we went with that. I felt very comfortable with it at the time, but now from time to time I get a little concerned that maybe I should have done more. I just have to pray for the best. How about you, lumpectomy or mastectomy? By the way - congrats on your 40th, with many many more birthdays ahead of you!!! Take care tomorrow- your over half way there!! hahaha!
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I wanted to add to what positiveme said about the allergic reaction. I had one after tx #2 - then got the premeds before the next 2 tx's. When the taxotere started during my 4th tx, I started having the allergic reaction again - despite the premeds - but my nurse stopped the infusion, my reaction stopped. She waited for about 10 min or so, then she started the infusion again at a slower rate for a while before speeding it up more. I was fine after that.
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Hi ladies,
I finished my last of 4 treatments on 25th September. Started rads yesterday. I had a fairly easy time with SE. The worst was terrible mouth sores after the first TX but that was my fault for eating spicy food. Anyway just wanted to encourage you all to be positive and keep pushing through. You will come out stronger at the other side.
In the last two weeks i've had a lot of eye twitching and other random areas of my body jumping. I'm not sure whether I had it before and just didn't notice it. In the scheme of things it's not that big a deal....it doesn't hurt but it is there.
Also my nails are very tender. My toenails were extremely tender last week and it was uncomfortable wearing shoes. Plus I just kept stumping my toes against everything i walked past...typical. tghat has worn off in the toes but is still lingering in the hands
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Ladies: The head is shaved, it wasn't as bad as I expected. I can't stand my wig. It looks good BUT feels awful - extremely itchy, I'm not sure how long I can wear it to work. I rip it off the minute I get home & wear my little caps. But everyone stares....why is this? How do you handle this? I feel like I just need to walk around with a sign posted to me that says "chemotherapy" or something.....ugghhh.
Christi In Texas: I'm just north of Austin. We're almost neighbors!
Jen W: I wish you better luck for TX # 3, the unknown is the worst feeling for me. Whats the deal with the periods lasting forever?? I'm having major PMS right now so I'm wondering what this will bring??
Sleep well ladies!
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