Anyone on just Taxotere and Cytoxan?
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The lesions on my bones do not appear to be cancer!!!! I had a bone scan in June of '09, it was clear. Today's scan is clear. All of this is good news - we will watch, I'm sure. But this is very, very good news. These things do not seem to be metastasis. Thanks to all of you who helped carry this heavy load while I waited. You have made a difference in my life, even from afar. Now on to pain management, and it will not involve oncology, I hope!
Lottie - oh dear. Just hang in there. This is going to pass. About a month, maybe two max after chemo the roid weight just started to go away for me. And it kept going away. And it is gone now. Today, when I walked through the cancer center, I took a pause at the top of the stairs. After chemo, I couldn't make it to the top without stopping at least twice. Those days are over. I can do it in one clip, and I can do it with the same old strength that used to be there. Just hang out in a cozy cocoon for a while, be patient and kind to yourself, and wait. When the spring comes, you're going to come out like a perfect beauty.
MJ - the first chemo is a doozy. If you go back to August '09 in this thread, you'll read all about it. I could not put two and two together. Tell your onc for sure. It is so scary. But old chemo brain here can do the New York Times crossword puzzle again. I can remember the names of bands and the names of actors and all of the stuff that was so hard to get my arms around during chemo. Keep your chin up - you're going to get through this.
Gosh, girls - thanks again. WHEW!!! XO, Mary
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CONGRATULATIONS MARY!!!!!!!!!!!!!!!!!
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Mary, so glad to hear your good news. And, thanks for sharing your encouraging words about your rebound from chemo brain, etc. It helps us going through it right now.
I had my third tx yesterday and had a different nurse this time. After two failed attempts to get the IV line in and a lot of immediate bruising, she then got a co-worker to do the job. The other nurse did a beautiful job in only one attempt. Brutal!!
Now just to see how the se's treat me this round. I've worked out a plan with my Onc to taper the steroids today and tomorrow. Instead of taking two this morning and two tonight and being done...we're cutting back on today's doses by half and then I'll take the other half tomorrow. Not sure if it'll work but it's worth a try. I had such a terrible crash from the steroids last round and am trying to avoid that at all costs.
Have a great day ladies!
Sherri
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Lottie - It's not too much to expect kindness from caregivers. When they look at you as just a job, it's time for them to quit! My doctor and nurses have been great about acknowledging any side effects I've had. You can tell they hate to see their patients in distress. If I mention a side effect, they'll tell me anything they know of that will help alleviate it.
Patsy - 2 weeks on the hair seems to be pretty typical. There are a few women, I've noticed, that held on longer, but for most it was right around 2 weeks. But you've got the right attitude -- laugh about it! That pulling your hair out thing was hysterical! We've got a lot of running jokes here. My brother stops to visit and then as he's leaving says, "Well, I'll get out of your hair...." If I say I need to go do my "hair" (put on scarves) my hubby says, "Well, at least that won't take long!" I've been the butt of many jokes, but many of them I've said myself. May as well find the humor in all of this!
Juannelle - Rads for me have not been bad at all. I didn't even get pink for quite a while. I've been putting on pure aloe gel that I found at a health food store. The creams they give you are so greasy, and you can't even put them on in the morning before radiation. But my aloe gel soaks completely in and my rad nurse told me I can put it on in the morning too because it'll be completely soaked in before my treatment. I've had 17 treatments and I'm only pink. Under my arm is a little darker but I think the constant rubbing of my arm against my side has irritated that. Remember to lose the bra. The bra will rub the under side of your breast and cause irritation. I am more tired in the evening now than I had been before rads began. Sometimes my legs feel a little heavy or jelly like, but it has definitely not kept me from working or anything yet. But I will say that I have a desk job. Walking around fatigues me more quickly. Is your job physical? If not, hopefully you'll be okay. You had 6 TC's didn't you?? I only had 4, so I don't know if that will make a difference. At any rate, rads - at least for me - have been a walk in the park compared to TC! Let me know how you're doing!
Paddle Girl - Good luck with TC. May your side effects be minimal. Just remember, drink drink drink. Plenty of fluids. Keep your system flushed of those toxins. It's good to drink before treatments too.
Mary - PRAISE GOD!!!!!!!!!!!!!! I was so happy when I read your post. I pray that from here you'll just get healthier and healthier!!
I know 3 young women who have just recently begun this fight. I cannot believe how many women are affected by breast cancer. Take care everyone. Hope you all have comfortable days.
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Mary - I'm so happy for you! Congratulations and I am so sorry you had to experience such an agonizing wait for the scan results.
And, thank you, and everyone else for your encouragement while these post-chemo side effects keep popping up. Steroids are making me feel better today and the swelling is going away slowly.
Love to all
Lottie
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Lottie - glad to hear the swelling is going down. I recall you saying last week that you were going to be starting to go back to the office in Boston. How is that going?
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Hi Sugar77. I'd been going to my office 1 or 2 days at the end of every chemo cycle until 12/28. I went in that day and was so exhausted afterward that I haven't been back. I am so grateful that I have been able to work from home since early September before chemo started. Before that I was on sick time recovering from mastectomy. Anyway, I hope to get back to Boston on Thursday and Friday of this week and then build up to 3 days per week by early February. I had six chemo treatments and everyone keeps telling me that I'll be tired for awhile, but I keep pushing it, and then regretting it. Still, commuting to work and seeing my co-workers and friends always makes me feel better, and makes me stronger. I have to work to strike a balance and I expect that will come in time.
My legs are still really swollen but there's some improvement over yesterday. Honestly, I never expected to have so much trouble w/ side effects. I guess I'm unlucky and atypical.
I worry that ladies who are just starting out will read my posts and be frightened. I hope they understand that not everyone has these problems and that this regimen is doable ... that they'll be fine, are strong and can get through it.
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Jayne, good luck on your first tx. Be sure to drink lots of water and be prepared to be constipated. So take steps before chemo, the day of chemo and several days after to eliminate that SE. Everyone on this thread can tell you how bad it is. I had TC x 4 and it is doable, but it does take some work.
Mary, I am so relieved for you. That is just one more thing that you don't have to worry about now. I am glad you are getting over all the chemo feelings. I am still suffering from some, but feel better every day. Stard radiation tomorrow, so I am sure I will have SEs from that also.
Sherri, hope all is going well after your tx today. I know the roids crash was nothing to look forward to. Let us know how you are doing.
chynadollsmom, thanks for letting me know how you are doing on rads. I hope I do as well. I will start tomorrow, so we will see how I do. I only did TC x 4. I am so glad that I didn't have to do anymore, I was really ready to get it over with. They told me they would give me creams and lotions to put on and if I was going to use anything else, to let them know. I have already ditched the bra, I did that after surgery. I wear camisoles now and really like them better. I also have an office job and just sit at a desk all day and work on the computer. It is a good thing that I don't have a job where I have to stand for long periods, I couldn't do it.
lottie, glad you are feeling better. I doubt if you are scaring any women away. They will just know what to expect.
Hope everyone has a great evening and Hugs to everyone who is having a tx this week.
Juannelle
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Yea Mary!!!!
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Well, PrssnPrss must of followed me around during chemo
she sounds like the exact same timing of symptoms as I did. Last TX of 4 is on Feb 3rd, can't wait!!!!! 0 -
Mary, that's the best news! Pain management without oncologist: Only on this thread would you hear that and feel good.
Sherri: You and I had our infusion on the same day, and we both asked our doctors about steroids. What a coincidence! In my case, my ONC said that I need the steroids in the recommended dosage at the recommended time because he thinks the major side effects from T/C are just mistaken from coming down from steroids. He insisted that I should have the steroids a day before, the day during, and the day after chemo. Well you know what, I skipped my two steroid tabs yesterday afternoon and woke up with a swollen face. I should have followed doctor's orders. I wanted to, but when I remembered to take them it was already 6 PM and that was too late. I wanted to get some sleep.
I love reading all the posts. I find them very helpful and nurturing. Thanks, ladies.
Now I'm back into my chemo fog...
Brenda
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Brenda - re steroids: I took 1 1/2 yesterday morning instead of two...then one last night instead of two. So today I took one this morning and will take the final 1/2 pill at dinner tonight. So far, it seems to be working okay. Last night I started feeling a little bit of the fog a day earlier but today hasn't been as bad for day three as it's been before. Tomorrow will be the true test but so far the tapering seems to be working. I also went and had a Reiki treatment today so we'll see if that helps, too. I am tired and my sister is here to help out this week. She'll help with dinner and will entertain my 10-year-old tonight. They play crazy eights non stop and my daughter has a lot of fun and I feel less guilty about being a couch potato!!
Just finishing my herbal tea then I'm off for a little nap!
Sherri
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Brenda & Sherri
I was wondering if I could talk to the onc about reducing steroids, but my first treatment was relatively mild in comparison to others. I think that the heartburn and terrible taste wouldn't be eliminated by not taking the steroids.II would be fearful that tx 2 would be more problematic without steroids. Why did you want to reduce the steroids?
Barbara
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Just had my first TC round today!! Must say I feel rather 'normal'! I chewed gum most of the time I was getting the tx, but also had some food to, so I haven't yet noticed a weird taste in my mouth. I think gum will be a regular thing for me. I took steroids last night, they gave it to me during tx and I will take them again tomorrow. I think they are giving me a huge energy drive! I feel like the energizer bunny, so I like them for that, but I am not looking forward to what may be on the other side of this 'up' feeling as others have mentioned:) One day at a time.
MARY - great news!!
Thanks ladies for all the great info and for sharing your stories!
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Wow, this thread is great, it's just where I need to be. Tomorrow 1/22, I see the Onc to get my oncotype and treatment plan, although he's already said it's T/C 4x. We haven't discussed port yet, and you all have given me lots of questions to ask about the SE's.
Mary: Hallelujah!!!
On Chemopause (what a great word!) I had AC ten years ago, and the first day of the chemo was also the first day of my LAST ever period, age 48.
Ten years ago, I had lumpectomy, ACx4 , and 37 rads. This wasn't supposed to happen again!!! Last time, I had contract work, no disability insurance, and 2 preschoolers. I was so scared I worked straight through the treatment, only taking off a week for surgery and one day each chemo. I reduced my hours to 60%, but still plowed through. I'm not doing it that way again.
This time I am working already with a therapist, a Reiki healer, an acupuncturist, a chiropractor, a physical therapist, and maybe some support groups. Even went to a sleep clinic and got a brand-spanking new CPAP machine to support my healing. And I am taking time off work.. I'm ten years older, had a more extensive surgery (BMX), and have steady, insured employment. Don't know yet how much time I'll take off, but if I have 50% of my normal energy, I can support either my work duties or my family duties, and I will choose family.
I'm still thinking I will forego the wig this time, but ... I'll know when the time comes. Last time I lost my hair while we were at a cabin on a river, and swimming with the kids, I pulled out my hairs and let it float away, kind of a ritual. It's too cold for that kind of nonsense now.. spreading it on the snow just isn't the same...
Blessings to all, talk to you soon. Kit
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Leta17 - Hope your down days are not too bad. The 3rd day after chemo always seemed the very worst for me. Take care and drink plenty of fluids! Keep your system flushed!
pastapesto - Sorry you're having another go-around with breast cancer. But I am glad you're at a better place to take more care of yourself this time. I haven't worn a wig myself. I've got lots of pretty scarves and have learned to tie them in a variety of fashions. I also have a couple pretty nice hats -- especially with it being winter and all. Having my hair gone has really not been that bad.
Take care everyone. Hope you all are able to enjoy your weekends!
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It has been 6 weeks since I completed chemo. My fingernails are thin, spilting and have 4 grooves from each of the 4 chemo treatments. I am still waiting any hair growth. My energy is starting to return. I just wish I looked 'normal' again........sorry having a bad time today.......
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It's been 5 days since TC #5, and I am in chemo fog. My last one is on Feb. 8th! Yeah!!!
Just wanted to say hello to pastapesto. This is also my second bout with bc, you are not alone. Let me know how I can help you, and take care....
Brenda
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Brenda - I'm in the same fog. My TC treatment was on Monday, too. I'm achy and feeling tired with a little stomach gurgling. I do think the steroid tapering helped some as I didn't have as much of a crash when they wore off. And I think the Reiki treatment on Wednesday helped as well but I'm not wonderful. I've been trying to nap because my daughter signed us up to go to her school tonight to watch a movie and I don't want to disappoint her. My last one is on Feb 8th as well.
Barbara - the steroid tapering was to try to either avoid or at least alleviate some of the emotional crash when the steroids wear off. I think it worked to a degree. If you have any more questions just let me know.
Leta17 - glad to hear your first treatment went well yesterday. Here's hoping your side effects are minimal or non existent!!
Pastapesto (great user name!) - welcome to the "TC Club."
Back to my napping!
Sherri
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What a difference 24 hours can make! Last night I cried for hours I was so afraid of my first treatment. But it went so well. Had a reaction to the taxotere which they stopped, gave me bendaryl IV and restarted it slowly and I could tolerate it. I am full of energy and my mind is racing (?steroids), went to dinner with my parents afterwards. I am sure each day will bring something new but now the first treatment is over, I 'm not afraid anymore. I feel strong emotionally now (guess a good cry is therapeutic). Even my 17 year old daughter admitted to being scared last night, we talked, she took me today and stayed several hours and feels stronger.
Will check blood counts and see radiation oncologist 1/28. Keeping my fingers crossed for no neulasta injections!. I will take each day as it comes and whatever it brings.
Stay strong all!
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Hey Dianne, I just went through my first chemo with the CT regemin. I don't mean to be discouraging, but I have been so sick. I have never had chemo and I simply do not thiink anyone can be so ill. And I mean I have had some of the worst diseases in the world because I travelled Asia so much. Docs are now checking to see if I had an allergic reaction. Someone wrote that 50% are allergic to Tax but it is the apparent "gold standard." I seem to be one of the few who is so deathly ill and have been in hospital twice this week to get IV fluids, etc. I really do not know if I can take a second treatment because I have so many underlying illnesses. I am also set to do RADS 35 times after chemo. Have an ONcoSCore of 11%. I feel so islated because I see other women going through this with ease and I am flat on my back. Know that we love you and can take anything you can throw out. I know that because I had to hit the Board hard after my first Chemo-I simply could not function (still cannot) and needed reinforcements. And to all of the women on this thread, thank you again for all of the knowlege and support. My docs are now working overtime to try and figure out why I am so ill and why the "communication black out" with my onc seemed to have hit me alone. Maybe I was supposed to be talking to God. Praying for better days.SV 0
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Thanks, paddlegirl, the crying for 2 hours before chemo is what I need to hear.. I haven't been able to do the crying yet.
Today the onco called and said that my OncoType DX sample got lost in the mail, so we have to send it again. That would delay another week or two starting chemo. We were planning for chemo starting next week. I'm already 6 weeks post-surgery, so this was a major upset. We went in to visit him anyway, and asked if the treatment plan would change in any way from the OncoType results. Turns about, apparently not. He says if I do nothing now, I have a 75% chance of surviving 10 years, and if I do TC, then I'll have a 90-95% chance of surviving.Since I'm a recurrence, the new tumor is grade 3 and poorly differentiated, the score would surely come back either middle or high risk of recurrence. I knew there was very little chance of getting a low score, so we asked to go ahead with chemo without OncoType and he agreed. So I am starting chemo next week after all.
Also since I'm a recurrence, and had chemo before, we will definitely do Neulasta, since my marrow may be less robust in its response to the chemo.
So now it's REAL. I am really having chemo next week. My hair will certainly fall out. And all the rest. I have a lot to get done before that, mostly feel the feelings. I hate this! Hate it!
It will probably look better in the morning. Be well, Kit
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pastapesto - sorry to hear your battling the beast again. it may be possible to call the california company that does the oncotype dx and get your score expedited, but it sounds like you're moving along w/ chemo anyway. i just finished 6 TC treatments and I'm bone tired, but, I know I will slowly start to bounce back. Your remark about feeling the feelings really hits home. I don't think I really felt them until perhaps last weekend ... not fun. I went into treatment bull-headed and steroid-fueled and I think if I'd been more mindful and perhaps patient, I wouldn't feel so blown out now.
Take care of yourself.
Lottie
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Ok ladies,I have spent two days "goofing around" (not that we ever really do that) on the Board. As I am gaining a foothold on my humanity and sanity again. BUT, I am back to a serious question. I had my first TC Chemo week and a half ago. Today is the first day I feel human and took a walk to the ocean. BRRR, damn its cold outside. Came home ready to scarf down a batch of fresh waffles, butter and syrup only to find out that my taste buds are gone! nothing tastes like it should-even coffee. Everything seems to taste terrible. This has happened overnight. Is this normal and will it go away. I am so tired of surprises! This complaint seems so puny after a terrible week of recovery-but geesus!
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StillVerticle - short answer, it's normal, it'll go away. things may not taste right at this point until you're done with treatment. I found food just tasted different, not bad, but not as I'd remembered. I found that during the 2nd week or so of each cycle, my mouth was pretty raw, ... my bowl of raisin bran felt like a bowl of broken glass. this would only last 3 or 4 days. You may want to buy some biotene toothpaste and mouthwash too. The alcohol in regular brand toothpaste and mouthwash is way too harsh to use during chemo. And, don't feel feel like this is a puny complaint! All these things are cummulative and add up to a big sack of cr*p, as far as I'm concerned.
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I am off to get my wig styled and my hair cut. Day 3 and feeling good, taste buds are dulled and the only thing so far that tasted aweful, was wine, which I shouldn't have anyway! I exercised yesterday, at a slower pace, but it felt good. Routine has been normal, although I am without my kids at the moment so I can get my hair done, thought I'd like the quiet, but I miss the craziness when they are around! Funny I usually can't wait for a bit of peace and quiet.
Stay strong and enjoy the weekend!
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PastaPesto and Paddlegirl - I remember when I first began chemo as I watched it go through the IV and hit my arm, I choked back crying myself. I was scared silly, but just didn't want to sit there and cry around all the other patients -- although they probably would have understood. Then, all in all, things went better than I'd expected.
SillVerticle - I couldn't taste much food during my chemo. When I did eat, I tried to eat something fairly spicy so I'd get some flavor out of it. Oddly enough, one thing that was always easy for me to eat and managed to taste well was toast and poached eggs. I ate a LOT of them during chemo. I have a microwave poacher, so even when I was knocked on my butt I could still manage to waddle out and break one into the poacher and pop a slice of toast in the toaster.
Lottie's correct about regular mouth wash. They told me not to use it. My mouth also had a big reaction for about a week to 10 days after chemo. If I ate anything rough or sharp at all it hurt my mouth. My dentist also told me that I would be more prone to cavities from the chemo so he told me to use a fluoride rinse. I got an ACT rinse that had no alcohol and acted as mouth wash and fluoride. I am still using it every day.
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Leta17: Maybe you will be one of those lucky ones who will not have side effects. That would be really good.
LaceyK: Congrats on completing chemo!! Hair should be sprouting very soon!
Sherri: My youngest is 14. He does not want me around school that much! I admire you for scheduling your rest times around your child's needs. That's a good mom....
Jayne: I hope they remember to put in the benadryl first NEXT time.
SV, I did not think I would do a second round either. Months later I'm looking forward to my 6th and last one. I wish you the best. I think most of us can handle it, but there are some people who stopped the taxanes because they were too toxic. You and your doctor will talk about it and make a decision.
Speaking of taste buds, I have been having the strangest cravings at the strangest moments! For the past 3 days it has been pancakes at 10 P.M.!!! I've developed an aversion for coffee, but a love for all kinds of nuts, the saltier the better. 2 rounds ago my main craving was for beef, and I've never been a big meat eater!
I have a prescription for Nystatin which is a mouth rinse that you swish, gargle and swallow. I do everything but the last step. Can't swallow. But I think it helps with the "white tongue" and fungal infections of the tongue.
Take care...
Brenda
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Brenda I went through those cravings also. Thought I was nuts until I mentioned them on here and found out others were having them too! I told my friends it was like being pregnant.... only without the cute little bundle at the end. Wish I could have had that Nystatin. I hated the swamp mouth.
Well, need to get to bed. Night all.
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Hello all! Well it's 2 days since my first treatment and I feel so fortunate (almost guilty) that I haven't had any bad side effects yet (I'm waiting). No appetite but am eating a fair amount of healthy foods, drinking tons of water (thanks for the advice, it is the only thing that tastes good to drink- my tea addiction is officially kicked at present). I am thankful for NO constipation which I have suffered from for years, they are actually a little loose.
Stillverticle- glad to hear you are feeling better the second week out, how horrible to be so ill, hope they figure out why it was so bad for you
I hope everyone's Sunday is manageable, I'm hoping to feel well this afternoon still to go to the movies with my daughter and I really hope popcorn tastes the same!
Stay strong!
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