Anyone on just Taxotere and Cytoxan?
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Magob - As much as I wish you didn't have the bone pain, like you I'm at least glad to know that I'm not just going crazy. I think my husband gets a little tired of me mentioning this or that giving me problems, like I'm just whining or inventing symptoms or something. I just don't think he comprehends to what extent this chemo messes with your entire system. I am so grateful for this forum and for everyone on here who understands. The other day I had mentioned how fatigued I felt to my husband and he actually said, "What are you tired for now?" I'm glad we were talking by phone, because after I hung up I cried like a baby. My husband's a wonderful man, but he's not good at taking care of anyone sick. I'm the nurturer in the family so that's always been my job. Luckily for him I'm a pretty strong woman and I've been able to pretty much get myself through this. I have church family and friends who've been supportive, and all of you too. Most days I'm pretty upbeat, but there are those days that I just feel down, and sometimes I just need someone to understand how I'm feeling. I think it's just because dealing with the issues every day is draining. But the good thing is that after I acknowledge and deal with my gloomy feelings I'm able to pick myself back up and become optimistic once again.
So to anyone out there who's feeling a little woebegone today, take heart. We're all with you and we've all been there. And here's praying that your tomorrow will be better than your today.
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Thanks Valerie! I'm going every 3 weeks. I feel better after napping for a few hours. I really want to finish this regimen. I'm hoping I perk up in the next few days and am good to go by next Wednesday. I think I overdid it by going into the office yesterday -- the fatigue is definitely cummulative. You're lucky you don't have these skin problems. I guess my skin is my weak point, lots of sun exposure when I was a kid and a handful of skin cancers over the last 2 decades. I don't think it'll ever be the same after this. My face is pretty much fine, but my hands, arms and chest are a mess. I'd say that for the first time in this whole course, I feel depressed and discouraged but deep down I know it's only temporary. And, you being in Mass. also know that it's freezing today! Makes me want to curl up under the quilt until April!
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lottie, im so sorry you are having a rough time. maybe they can have more time between treatments? when i waited a month versus 3 weeks it made a huge difference and my onc said it was fine. also maybe getting another opinion? are there any other allergy meds or cremes you can try?
vegas, as far as the caps go, i heard the only ones that have a chance for working are the penguin cold caps, you rent them. I bought a different brand of ice caps and unfortunately i didnt read the full directions that your hair needs to be wet while using and best to use dry ice. so i sat in the chemo room with what looked like horse riding helmets on my head and they didnt stay cold enough. my onc said she preferred i didnt use but i did anyways. so since i didnt use them right the hair did come out. i wish i would have just got a short buzz cut. i did the full buzz off and had a hard time adjusting. i should have gone slower. anyways i am month and a half out from chemo and i feel good and hair is coming back. you all can do it, just be sure to have your docs manage the side effects and sleep when you can and dont push yourselves
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Ladies, I will start taxotere and cytoxan , monday, Jan 4th. My biggest question, right now , is , I am a widow, can I do this alone, or do I need to stay with someone , or have someone come in and stay with me.
I am sorry to say, I learned how much these groups help. My hubby was dx with a GBMiv, in 07 and he passed in nov, 08. I would have never made it thru without a group like you all. Now I am in need of the samething. So , I thank you, in advance, because , I can already see I have found the right place for me.
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Mlsledford - I can only speak to the full experience of one treatment (I had my second one today and it's too soon to tell). During days one and two I was fine...it wasn't until the steroids were done and the aches and tiresness set in. That was only for a couple of days. My sister came to stay with me and it was a big help with my 10-year-old daughter as I didn't have the energy to do much with her those days. My sister baked Christmas cookies and they did crafts...stuff like that. She also helped get my daughter off to school those few days. I probably could have done it myself but having her here really helped. I sure wouldn't have had the energy on those down days to do crafts, etc. While it was wonderful to have her here, I could have done it by myself but it wouldn't have been as much fun for my daughter.
I hope this helps!
Sherri
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Hi ladies - for anyone concerned about joint pain, I stumbled upon this a few months ago under managing menopause symptoms. One possible cause of joint pain could be temporary post-chemotherapy rheumatism:
(sorry this is in big, bold type - I can't figure out how to change it - it doesn't look like this when I try to edit it...)
Is joint pain normal? Question from Victoria: Is joint pain normal? Answers -Charles Loprinzi, M.D.: Joint pain is a common complaint in many women and men as we reach middle age. Joint pain itself is rarely caused by recurrent breast cancer. There is a particular syndrome or phenomenon where patients, a month or two following completion of chemotherapy, can get quite a bit of trouble with pain in their hips and knees and morning stiffness-type troubles. This has been termed "post-chemotherapy rheumatism" and is something that generally goes away in a matter of months. Jennifer Griggs, M.D., M.P.H.: If you're uncertain about any pain you're having, of course, you should contact your cancer care provider(s).
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msledford - Sorry you have to go through this. Are you having 4 treatments or more? I had 4 treatments and my husband was out of town for basically all of them. I pretty much took care of myself. During the week right after chemo someone would come in and take my dogs out for me part of the time, but I still had to take them out sometimes myself. My family and friends would also pop in to make sure I was okay. Sometimes I had meals that people prepared for me too, and that was helpful. Now, I did okay. But some of the women on here had very bad reactions and probably would not have faired well being on their own. I'd say that at least until you know how you're going to react to the chemo, for at least the first treatment you might want someone to come and stay with you for a few days. Personally, I'd rather have someone come to my home because when I don't feel well, I'm more comfortable in my own home. If you do okay after your first treatment and feel you can be on your own, maybe you could at least have someone "on call" that you can call if you need help and that would check in with you every day to make sure you're doing okay. Your body is going to be put through a pretty traumatic experience. I don't think you want to be entirely on your own. I did have episodes where I nearly passed out. That's why I'm thinking you at least want someone to make sure you're doing okay every day. One thing imporant to remember is to drink, drink, drink. You want to send a lot of fluid into your system to flush the harmful toxins. It also helps prevent you from becoming too light headed. I pray you will tolerate the treatments well, but your freinds and family will want to help you. Let them. You're going to need the support. Keep us posted!
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Chrisct - Thanks for the info!
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msledford, you may want someone to go with you the first time to see how you react to the drugs. I did just fine, even though I only had to go to one chemo by myself, I could have made it every time. I had absolutely no reaction to the drug going in. They will probably give you Benadryl and that makes lots of people sleepy, but it doesn't have much affect on me. If you don't have anyone to go with you, you can contact the American Cancer Society and they will try to arrange someone to escort you. It would be a big help for you I am sure. Sorry to hear about your husband. Life can just keep throwing us curves sometimes. After my first tx, I felt like I had the flu for several days, but managed to take care of myself. I am usually down for about 3 days starting the 3rd day after tx. Then I start to feel better. I am still suffering from fatigue, but everything else seems to be gone. You may want to fix a few quick meals for yourself, so you don't have to stand for long periods. Be careful eating salads and fruit, if your WBC count falls. They didn't even want me to touch fresh fruit and vegetables. Good luck.
Juannelle
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msledford - Sorry you have to go through this. Are you having 4 treatments or more? I had 4 treatments and my husband was out of town for basically all of them. I pretty much took care of myself. During the week right after chemo someone would come in and take my dogs out for me part of the time, but I still had to take them out sometimes myself. My family and friends would also pop in to make sure I was okay. Sometimes I had meals that people prepared for me too, and that was helpful. Now, I did okay. But some of the women on here had very bad reactions and probably would not have faired well being on their own. I'd say that at least until you know how you're going to react to the chemo, for at least the first treatment you might want someone to come and stay with you for a few days. Personally, I'd rather have someone come to my home because when I don't feel well, I'm more comfortable in my own home. If you do okay after your first treatment and feel you can be on your own, maybe you could at least have someone "on call" that you can call if you need help and that would check in with you every day to make sure you're doing okay. Your body is going to be put through a pretty traumatic experience. I don't think you want to be entirely on your own. I did have episodes where I nearly passed out. That's why I'm thinking you at least want someone to make sure you're doing okay every day. One thing imporant to remember is to drink, drink, drink. You want to send a lot of fluid into your system to flush the harmful toxins. It also helps prevent you from becoming too light headed. I pray you will tolerate the treatments well, but your freinds and family will want to help you. Let them. You're going to need the support. Keep us posted!
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Sherri, I hope you are doing well from your chemo today. Probably will feel fine for a couple of days then the downward spiral. Good luck to you.
Juannelle
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msledford -
I am sorry you have to go through this. Definitely have someone come with you to your first treatment -- most people do fine but if you have a bad reaction, it's best to have someone there. In retrospect, after 5 treatments, I'd say the hardest thing to deal with is the fatigue and sort of brain-fog that is sometimes hard to shake. I have been very lucky and not had any seriously low blood counts, so I haven't had to have any medication like Neulasta, that can cause bone pain. Things that have been helpful to me have been lots of fluids, a good multivitamin (ask your doc 1st), exercise (even if you can't fathom it, a little movement makes a big difference), this forum of wise and wonderful women, and, a sense of humor. Juanelle's advice above calling the American Cancer Society is great -- they can match you up w/ someone to go to your treatments with you if necessary. Once you've had say 2 treatments you begin to get the hang of how your body will react and you can plan a little better how you're going to feel. And, as others have said, the women in this forum are great sources of information and support.
Lottie
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Msledford - I live alone, and went through chemo with the help of friends and family. Like others have said - be sure to have someone go with you for your first round of chemo. If you can find volunteers, try to have someone with you every time. It helps to have support. I found a great cancer support group at church, and they helped so much. It was helpful to have people go to the grocery store and do small errands. I am lucky to know a nice man who often came to my home to take out garbage and do any heavy work that was needed. It is hard to ask for help, but I would encourage you to do it. There is a time and a place in life for everything, and this is the time to allow yourself to be cared for. The advice on this board is sound - the steriods will keep you active until around day two or three post chemo. After that, be ready to move from bed to the couch and back to bed for a while. One of my friends really helped by taking notes when I talked to my doctor and writing a list of the medications I was supposed to take and when. And she also called to remind me to take them - the brain fog is really something! Ask your friends and helpers not to rely on any verbal agreements for lunch or appointments and things like that - encourage them to call and remind you about things like this. And write EVERYTHING down. After treatment number one, you'll get the hang of things.
You might also think about going to the drug store before your first treatment to load up on lovely things like laxatives, claritin, eye drops, and so on. It's very nice to have these things on hand before you start to feel crummy. There is a good list on this site - check it out.
Do not be afraid - you are going to get through this just fine. The rest of us have made it through, and so will you. Have faith - looking back on things, it is amazing that when I really needed something, it showed up right on time. Never too early, never too late, and just enough. And I had no control over any of it. I will say my prayers for you - that there will be people in your life who will appear to help.
chrisct - thanks so much for the info on post-chemo rheumatism. Hooray! This really helps - and it sounds like it will go away!
Sherri - hope you are doing well after chemo. Hang in there.
Vegas - hope things go well tomorrow. Are you drinking lots of water today? I always started loading up the day before. You're going to do well - let us know how you are, will you?
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Is anyone else having trouble with hip pain after standing for a while? I find I can't stand still for more than 5 minutes before my hips begin to ache. It started with my first T/C tx in October and has gotten progressively worse with each treatment. I read today that a possible late lasting side effect from chemo is rheumatism. Now that I've finished chemo I'm hoping it will go away, but it is really painful.
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Sido - There seems to be quite a few of us that are dealing with aches and pains in our bones and joints. Look up several entries at Chrisct's entry. She quoted something she found about post-chemo rheumatism. That may give you a little hope that it will go away. I also saw somewhere that exercise like walking and such is supposed to help. I'm sorry you're in such misery. I hope it diminishes soon for you.
I pray all of you will have an enjoyable New Year's Eve and that 2010 will bring you all blessings and health!
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Hi ladies hope new year started out good for you. I was fEeling really but then woke up to no eyelashes and some knee pain! Ugh! I pray my brows stay and hope these lashes will grow back soon!
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hello and happy new year!
i have a question: i am stage iia or iib (surgeon wasn't sure due to not removing more nodes and not having a "tumor" per say), ild, with 2 of 3 nodes positive. i do not have clear margins and will have a double mastectomy after chemo and then more than likely rads. surgeon will take a few more nodes during surgery -- she said she doesn't think the cancer has gone up into more than hopefully the next few (or hopefully not!) the next few in that area (under my arm -- close to my left breast). i have completed 4 rounds of tc and i'm scheduled for 6 treatments -- i've noticed that many of you are only having 4 rounds. . . i would love to be in that boat? what was your onc's rationale for only 4 versus 6 rounds? i know it's easy to think "the more, the better" because it's killing, hopefully, the cancer cells (if any), but i sure would like to bow out now and get my strength up and keep it up for good.
thanks for listening and for any feedback!
take good care,
sammy
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Thank you Chynadollsmom. I found the post you mentioned and am heartened to know that the pain should subside the further out I my from my last tx.
I hope everyone has a healthy and peaceful 2010!
Be well, Sido
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Long weekend's over. Drat. That means back to radiation tomorrow. My husband's making plans for little trips around the end of my treatment time. I sure hope I feel well enough to go and that my breast isn't too sore to let me wear clothing, let alone go on a trip. I can't seem to make him understand that we can't make definite plans until very close to the time for the trip. He's never gone through anything like this, so he just truly does not understand this whole "if I'm able" concept. As badly as I wish he understood what it's like..... I sure hope he never finds out. Love him too much for that.
My brows are nearly gone now, but still have my eye lashes. I'm actually getting pretty good at brushing my eyebrows with a brow brush and eyebrow powder. However, I have to remember not to rub my face or I rub my brows right off. Course that typically only happens when I'm tired and I'm usually home by then. But, anyway, for anyone who's lost their brows, I highly recommend a brush and powder over a brow pencil. I found it impossible to draw realistic eyebrows on with a pencil.
Hope everyone is doing well. For anyone who has treatments this week, I pray they go well. And for everyone coping with previous treatments, I pray that each day finds you feeling stronger and more "human."
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Hello Ladies! I recently found this site and am very thankful for the support, advice and encouragement you give everyone who reads your words of wisdom. I have gone through one round of C/T with #2 coming up on Wednesday. My S/E weren't as bad as I had anticipated but from reading here everyone is different and from one round to the next the reactions also vary. I had a really tender scalp around day 12 so at the 2 week point I leaned over the sink and cut all my hair off, leaving only an inch! That helped me alot but now it is tender again and the rest of it is falling out. I didn't cry over any of this. It is just weird how easily it comes out. Regarding the TTO, how often should this be put on the nails? Mine are ok but I don't want to lose them. I have 4 Rounds of C/T to do. I had the mastectomy at the end of October with reconstruction started then and Round 1 on December 16. Thanks for all the helpful hints I have read so far. I haven't read everything here yet but will.
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Boxplayer - I too am doing TC. I had my second treatment on December 29th. The last one hit me differently with more stomach upset and fatigue. I think (I hope) I'm on the mend today. If you can, try to put your finger and toe nails on ice when you have the Taxotere. The nurses at my centre told me I should do this to help protect my nails. They simply put bags of ice over the nails for me. So far, so good. I do rub Tea tree oil in each night and I was given a very strong nail hardener in a kit supplied by Sanofi Adventis, the mfg. of Taxotere. This nail hardener is really good and I don't know where it can be purchased as it's some company in Germany that makes it. Maybe OPI has a strong nail hardener, too.
I had my hair buzzed to about 1/2 inch shortly before it started to fall out. Around three weeks after my first treatment...just as I was getting ready to go in for #2, my scalp started getting very tender and the hair started coming out. I still have hair but it's thinner and I have bald patches...not a pretty site! If you read through this thread, you'll find a lot of helpful tips. One is to take Claritin the day of your Neulasta shot and for the next few days after to help with bone pain. Another is to chomp on ice chips during the Taxotere infusion, which can help avoid mouth sores.
There is also a thread for women who started chemo in December. You might want to check it out, too, as all of the ladies who post are at the same point as you. I think it's called "Starting chemo December 2009 - Holiday Chemo".
Sherri
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Thank You Sugar77. I will look into that thread. I have also read about using dark/black nail polish. Does that really help? I haven't been told about receiving Neulasta so maybe I won't need it. My labs are drawn just prior to talking to my oncologist and then I get the chemo about 2 hours later. I am taking the results of my first lab with me to compare notes. Thanks again. I wish you well!
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Hi Girls! I had my first round of TC treatment on the 18th and the next one is the 6th. I was wondering if any of you specifically asked your doctor to test your tumor to see if it amplified TOPO2 isomer. I am grade 3, 35 yrs old, a high KiP (whatever) but HER2-. So I would feel much more comfortable knowing that I do not express TOPO2 and my choice of TC vs TAC was the right one. Any help would be appreciated, Thanks I just need to get a lab that will do it outright without me being involved in a study.
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Boxplayer - I heard of women using the dark polish when their nails turn color. I have a dark one from when I used to get the gel nails done but haven't put it on yet. So far my nails are still pink and healthy looking...other than the tips where my fake nails used to be. I thought the dark polish on such short nails right now might draw more attention to them. If they do start looking wonky, I'll put it on. Black polish is really in style now so that's a good thing. Regarding the Neulasta shot, my onc just said right from the beginning that I'd be getting it the day after each infusion. He asked if I had benefits coverage through work that would pay for it and when I said yes, then he said I'd have it. Our Canadian government healthcare system pays for all costs of chemo, surgery, doctor visits, etc. but doesn't pay for this shot. I think if you have the benefits coverage, it's given as a preventative measure to ensure the counts never get too low.
Adams74 - welcome to the TC thread! I'm not familiar with testing for TOPO2 amplification. I think the Ki-67 is the proliferation rate (how the cells are turning over??). Your onc or his/her nurse can probably explain to you and provide you with the best options for testing. Good luck!
Sherri
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Thanks Sherri. Yeah The ki-67 was high. And I talked to the nurse last week when the doctor was out of town and they thought that "they" (researchers) were just conducting the topo2 test in conjunction with studies. I am sure there is a lab out there that does it regardless of whether you are enrolled in a study. Now whether the insurance company will pay for it is another thing but I really don't care at this point. Thanks Oh I also heard there was another test regarding chromosome 17 but I am working on 1 thing at a time. haha.
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Hi Ladies!
It's been a few weeks since I last posted here. Congratulations to those who are finished with T/C. I have 2 more to go. My last round was Dec. 28. The next one is on the 18th of January. I am also going through reconstruction and tissue expander fills.
I just wanted to share information about my diarrhea medicine. Diarrhea has been my worst side effect during T/C. Nothing seemed to work until I was prescribed "lomotil". It worked really well, and I don't even think it brought on any new s/e's.
I also wanted to share my anxiety about hair loss this time around. After my first Dx I got A/C, lost all my hair and it grew back with a vengeance. This time around I am not sure if I will get all my hair back. I had a case of follicle-itis after the second round. My scalp was covered with red bumps, and it was painful. My ONC suggested using Dove for the head, and it worked like magic! I woke up the next day with scabs. My worry stems from the fact that there were scabs. Aren't scabs the prelude to scars, and does hair grow from scars? I am probably just worrying myself needlessly (like my ONC says), but I can't help it.
So has anyone had follicle-itis and similar anxieties?
Take care, ladies.
Brenda
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Adnerb - Chelev can help you with info on folliculitis - she had a nasty case of it, it slowed her hair growth initially, but now her hair looks great. Hopefully the fact that your hair grew back so well the first time means you've got strong follicles and that you'll be fine this time around too.
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Hi Brenda - I had the same thing happen, and it was after round 2 just like you. I did not have it after round three - maybe just one or two bumps, that was all. I have hair growing back pretty much everywhere, just thin at the top. In time, I expect it will all fill in. No worries, OK?
I have tough news though. Long story short - there is a lesion on my spine. My back doctor said it showed up on my MRI in January 2009, but at the time it was not a concern. Now that he knows I have breast cancer, he wants to rule out bone metastasis. By the way, my breast surgeon did a bone scan, and there were no remarks about a lesion. My oncotype score is 20 - I sure am glad I went ahead and did chemo. Hope this helps some of you who also decided to go for it. Chemo is tough, but it can nip some nasty things in the bud.
MRI with and without contrast is scheduled for Thursday evening at 6:00 - or sooner if they get a cancellation. Results come back Monday. Say a good one for me, girls. XO, Mary
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Mary, let us know as soon as you can what your results are. We'll be praying for you.
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Mary-
Hoping someone cancels tomorrow. Waiting is so hard. Sending you positive thoughts and prayers.
Barbara
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